<script data-pm-proxy="intercept"></script><?xml version="1.0" encoding="UTF-8"?><rss xmlns:dc="http://purl.org/dc/elements/1.1/" xmlns:content="http://purl.org/rss/1.0/modules/content/" xmlns:atom="http://www.w3.org/2005/Atom" version="2.0" xmlns:itunes="http://www.itunes.com/dtds/podcast-1.0.dtd" xmlns:googleplay="http://www.google.com/schemas/play-podcasts/1.0"><channel><title><![CDATA[Postcards From Grief]]></title><description><![CDATA[Exploring my partner's sudden death, and life beyond, aged 47 and a bit.]]></description><link>https://erinbaker1001.substack.com</link><image><url>https://substackcdn.com/image/fetch/$s_!Uczp!,w_256,c_limit,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F994cee87-8402-4b8e-ab52-c2a795d62ae2_1280x1280.png</url><title>Postcards From Grief</title><link>https://erinbaker1001.substack.com</link></image><generator>Substack</generator><lastBuildDate>Thu, 03 Sep 2026 23:34:46 GMT</lastBuildDate><atom:link href="/__u/erinbaker1001.substack.com/feed" rel="self" type="application/rss+xml"/><copyright><![CDATA[Erin Baker]]></copyright><language><![CDATA[en-gb]]></language><webMaster><![CDATA[erinbaker1001@substack.com]]></webMaster><itunes:owner><itunes:email><![CDATA[erinbaker1001@substack.com]]></itunes:email><itunes:name><![CDATA[Postcards From Grief]]></itunes:name></itunes:owner><itunes:author><![CDATA[Postcards From Grief]]></itunes:author><googleplay:owner><![CDATA[erinbaker1001@substack.com]]></googleplay:owner><googleplay:email><![CDATA[erinbaker1001@substack.com]]></googleplay:email><googleplay:author><![CDATA[Postcards From Grief]]></googleplay:author><itunes:block><![CDATA[Yes]]></itunes:block><item><title><![CDATA[Emotional wobbles]]></title><description><![CDATA[Tears, BBQs and passports]]></description><link>https://erinbaker1001.substack.com/p/emotional-wobbles</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/emotional-wobbles</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Thu, 03 Sep 2026 14:21:10 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!CfWH!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F54c159fc-43f8-46b2-8fd3-2681066e0be2_2316x2895.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p>James and I trot off to the garden centre to buy a new BBQ. We browse the models on display, him with considerably more enthusiasm than me. The big question is charcoal or gas. I&#8217;d go charcoal because I&#8217;ve never dealt with a gas canister and it looks</p><div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!CfWH!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F54c159fc-43f8-46b2-8fd3-2681066e0be2_2316x2895.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!CfWH!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F54c159fc-43f8-46b2-8fd3-2681066e0be2_2316x2895.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!CfWH!, /__u/erinbaker1001.substack.com/w_848, 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/__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F54c159fc-43f8-46b2-8fd3-2681066e0be2_2316x2895.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!CfWH!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F54c159fc-43f8-46b2-8fd3-2681066e0be2_2316x2895.jpeg 1456w" sizes="100vw" fetchpriority="high"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p>like something that could go horribly wrong and be too unwieldy for me to handle; James says gas is way easier. We pause to examine one heavy-duty model and James says softly; &#8220;Well, its got to be your choice darling, because it will be you dealing with it; I&#8217;ll be dead.&#8221; Way to go on ruining the chilled Saturday vibes. He&#8217;s right, of course, but I can&#8217;t think about that, so I cut my losses and go gas, just because the entire shopping expedition now feels like too much and I&#8217;m suddenly tired and want to go home.</p><div><hr></div>
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   ]]></content:encoded></item><item><title><![CDATA[Renegotiating your relationship]]></title><description><![CDATA[When the person you love is dying, it&#8217;s up to you to move position]]></description><link>https://erinbaker1001.substack.com/p/renegotiating-your-relationship</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/renegotiating-your-relationship</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Wed, 02 Sep 2026 10:42:05 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!rpYy!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3484de77-5656-4bce-b71f-b036d5ea9ba2_640x640.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p>Caring for someone who&#8217;s slowly dying begins before you realise you are doing it. One morning I suddenly realise we have fallen into a pattern of me knowing his pill regime of eight different medicines with different timings off by heart, which hours of the day best suit him and what he is and isn&#8217;t capable of physically and mentally. The thought of going away on a 24-hour work trip and trying to explain that to someone else feels impossible, so I cancel the next one. </p><p>I also realise pretty quickly that caring includes knowing when not to care for them - when to stop fussing and instead leave them alone with what independence they have left. With this in mind, I&#8217;ve stopped trying to press him into sorting out his pensions, at least two of which don&#8217;t have any expression of wish on them about who will benefit on his death. But the more I remind him, the angrier he gets.  I give in and back off.</p><p>Instead, I take a deep breath and book us and our four boys a three-night holiday in Seville for the school Easter holidays, which requires choreographing a ballet of calendars around the kids&#8217; revision schedules (two lots of GCSEs and one lot of A-levels), my work and James&#8217;s chemo rounds. It is not a pretty dance.</p><p>I also spend ages trying to get the hotel right: we need one that is central to everything, and as lovely as possible given this may be James&#8217;s last holiday abroad, whilst not breaking the bank. It needs a room with an excellent view, in case he has to spend large parts of the day in bed. I realise I also need to book all our evening restaurants because he can&#8217;t walk far so we can&#8217;t just stroll around. Too late, I also realise that the global home of tapas, while a lovely thought, is a nightmare for someone with terminal cancer because the best tapas places are bars where you jostle among the crowds and stand with a beer, munching from small plates. James can do none of those things, so I have to find the best places with table service. Finally, I have to contact Gatwick airport about assistance through security and to the gates: I am sure James won&#8217;t be able to walk that far and, if he does, it will tire him out for the rest of the holiday. He insists he will be fine and doesn&#8217;t want assistance. We have&#8230;another row.</p><div><hr></div>
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   ]]></content:encoded></item><item><title><![CDATA["You have months, not years"]]></title><description><![CDATA[Why we said no to treatment]]></description><link>https://erinbaker1001.substack.com/p/you-have-months-not-years</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/you-have-months-not-years</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Sun, 30 Aug 2026 08:01:21 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!J7Oi!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F5e53caef-d02f-47b7-9978-9c846dbbf597_4032x3024.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p>&#8220;Things are as they are, whether you like it or not&#8221; writes Oliver Burkeman in his book, &#8220;Meditations for Mere Mortals&#8221;. Never a truer word written, I think.</p><p>Today, in all honesty, I just wished James would hurry up and die. He has been a total arse, yelling at me in the car on way back from Sainsbury&#8217;s because he was stressed about not going to his son&#8217;s rugby game, even though the reason he was missing it was because he had invited his uni friends down, and the reason we were at the supermarket was to get food for his mates and their families.</p><p>Why, I wonder, for the millionth time, are we hosting his friends (and their kids), and not the other way round, when we are the ones carrying the burden of terminal cancer? It is because he doesn&#8217;t recognise that having a terminal brain tumour means his friend should do more, and he has so much pride about always being the host and providing the good time for people. He is still living by his former expectations of what was required from him when he was well, and we didn&#8217;t have this huge burden to carry, so he has carried on inviting friends down for lunch with their kids. It makes no odds to him - he sits on his backside and does nothing either way, while I do the driving, shopping, cooking, clearing up and making small talk with children I&#8217;ve never met before, when I can barely cope with my own.  So I&#8217;m angry, and he&#8217;s angry, and we have guests arriving in an hour. Lovely.</p><div><hr></div><p>We talk lots about the balance between treating his symptoms and letting him die with some quality of life. Every medicine he is prescribed comes under this forensic microscope of discussion: chemo, steroids, radiotherapy, surgery. His hands are struggling to grip stuff and Miriam, our clinical nurse specialist, has advised physio. James says if the physio is an appt at Guys hospital once a week and there&#8217;s a month&#8217;s wait, he doesn&#8217;t want the referral. If it&#8217;s simply a sheet of exercises from the physio which he can do in his own time and home, he does want the referral. I agree.</p><p>We are given one optional major route to try if we want: Optune Gio. It targets the cancer cells directly with no side effects, and comprises a series of electrically wired pads that stick to your head, the wires extending down the back of your neck and into a battery pack. You must wear them for at least 18 hours a day, so if you go out, the battery pack fits in a rucksack. It can give you many more months of life. It also costs &#163;20,000 a month. Our medical insurer is one of the few to cover the cost, but says we may have to pay up front and then wait to be reimbursed. </p><p>The thought of this, plus the photo of the man on the front of the brochure modelling it with a cheery grin in what I assume is meant to look in some way enticing but in which he looks like a cling-on extra from Star Trek, makes us decide against. Or rather, James decides against. I am agnostic, which sounds like a very strange position to adopt when the stakes could not be higher, but this has to be 100 per cent his decision. </p><p>We are also told that although you have to wear it for at least 18 hours a day, the battery pack only lasts two hours, and it beeps when it&#8217;s running low. Our consultant tells us that another patient of hers wore his in his backpack on the packed commuter Tube to work one day, and the battery ran low and started beeping loudly on the packed Tube. Everyone turned round to see a man with a rucksack with lots of wires coming out of it&#8230;. </p><p>&#8220;Yeah, no thanks&#8221;, said James.</p><div><hr></div><p>James bought me a BBC1 Countryfile calendar at Christmas as we find the series so calming, and I turn it over to March as we hit the first day of the new month. It feels like a betrayal of him: like I am ushering time along, when he has so little of it. I am starting to get increasingly teary about this. I don&#8217;t want him to go, and I can&#8217;t handle the slow process of it all. Every morning, it&#8217;s harder to get out of bed.</p><div><hr></div><p>When did we start inhabiting different worlds? He&#8217;s fast asleep at 9am on a Monday morning when I arrive home from dropping the kids at school. I&#8217;ve also taken two work calls. He seems locked in his own world of sickness, and I am frightened that I didn&#8217;t see him move across the chasm and can&#8217;t follow him across; I can&#8217;t even see the bridge he took. It breaks my heart; he looks so lonely, asleep in the bed on his side, his hands tucked under his cheek. I can&#8217;t do anything about it, other than bear witness.</p><div><hr></div><p>The next morning, our neuro-oncologist says we have months, not years. James responds simply by saying that their management of his symptoms feels like a game of Whac-a-Mole and he&#8217;s getting annoyed. The main message seems to have totally passed him by, and I try not to blink in the consultant&#8217;s room, lest the tears filling my eyes tip over and run down my cheeks and he sees. </p><p>In what must be the ultimate example of insane optimism, James&#8217;s conclusion about being told he has only months left, is that this is good news because it means he isn&#8217;t going to suffer a slow degradation if he&#8217;s this well right now and he only has months left. He thinks it must mean just &#8220;a messy last month&#8221; of me wiping his bum. </p><p>At the end of the day, in the kitchen, he says to me: </p><p>&#8220;Tomorrow&#8217;s tomorrow, until it isn&#8217;t&#8221;. </p><p>God, this man. </p><div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!J7Oi!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F5e53caef-d02f-47b7-9978-9c846dbbf597_4032x3024.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!J7Oi!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, 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xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p>x</p>]]></content:encoded></item><item><title><![CDATA[Dance me to the end of life]]></title><description><![CDATA[Thank you, Marc Cohen]]></description><link>https://erinbaker1001.substack.com/p/dance-me-to-the-end-of-life</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/dance-me-to-the-end-of-life</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Thu, 27 Aug 2026 16:11:14 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!SwlI!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fdff072cd-1ad8-4841-aac7-a5b6e68613e0_714x1250.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!SwlI!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fdff072cd-1ad8-4841-aac7-a5b6e68613e0_714x1250.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!SwlI!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fdff072cd-1ad8-4841-aac7-a5b6e68613e0_714x1250.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!SwlI!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fdff072cd-1ad8-4841-aac7-a5b6e68613e0_714x1250.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!SwlI!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fdff072cd-1ad8-4841-aac7-a5b6e68613e0_714x1250.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!SwlI!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fdff072cd-1ad8-4841-aac7-a5b6e68613e0_714x1250.jpeg 1456w" sizes="100vw"><img src="/__u/substackcdn.com/image/fetch/$s_!SwlI!,w_1456,c_limit,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fdff072cd-1ad8-4841-aac7-a5b6e68613e0_714x1250.jpeg" width="714" height="1250" 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/__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fdff072cd-1ad8-4841-aac7-a5b6e68613e0_714x1250.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!SwlI!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fdff072cd-1ad8-4841-aac7-a5b6e68613e0_714x1250.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!SwlI!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fdff072cd-1ad8-4841-aac7-a5b6e68613e0_714x1250.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!SwlI!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fdff072cd-1ad8-4841-aac7-a5b6e68613e0_714x1250.jpeg 1456w" sizes="100vw" fetchpriority="high"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p>At 7.28pm on 20 December 2025, James Lancaster, a man who is three months into dying, and three months away from death, starts to sing as he waits for supper to cook in the oven. </p><p>It is his karaoke special playing on Alexa: Walking in Memphis, by Marc Cohen. His voice is incredible: a smooth, effortless tenor, despite the fact he is a 6ft 2in, 17 stone rugby player with cancer. He was once a choir boy and, despite having no formal musical training, has perfect pitch and stunning control of his vocal chords and breathwork.</p><p>I&#8217;m desperate to capture it for after he has died - for the rest of my life - but he refuses to be videoed, so I have to do it surreptitiously on my phone, pretending to email a colleague, while I follow him round the kitchen island, phone kept tilted to the kitchen surfaces, with an occasional sneaky lift up to him before he turns in my direction. The entire film lasts less than a minute.</p><p>&#8220;Put on my blue-suede shoes and I boarded the plane.. touched down in the land of the Delta Blues, in the middle of the pouring rain.&#8221; He puts something in the bin, walks round the other side of the island and swipes a cracker through a pot of dip. I can see, in the video now, the cardboard wrapper for whatever is in the oven: I wish I knew what it was, but I&#8217;m watching the video the following August, and can&#8217;t recall.</p><p>He&#8217;s wearing his tatty old blue quarter-zip jumper I bought him 10 years before and a pair of baggy jeans. His head is half bald from the radiotherapy that has two more weeks left to run in a six-week cycle, and the rest of his head I had shaved for him, to make the baldness less apparent. But he&#8217;s my man, no doubt about that, as sexy and handsome and blind-sidingly gorgeous as ever, and his voice? It&#8217;s what my particular brand of angel is going to sound like when the heavenly flight hymns me to sleep as I die: I just want to hear his voice, singing this to me as he holds me in his arms.</p><p>How does someone who knows they are dying have the energy or desire to sing like this? His voice swoops and dives like a swallow at dusk on the warm zephyr. It&#8217;s a mellow sound and I want to fall asleep on its rise and fall. He&#8217;s throwing himself into the high notes (&#8220;I&#8217;m as blue as a boy can be&#8221;), liltingly joining the refrain, softly caressing the quieter lyrics (&#8220;Won&#8217;t you look down over me?&#8221; hits me particularly in the chest), all without a care in the world. </p><p>It seems strange when I gaze at us in the kitchen from outside ourselves, but also I instinctively understand it. He knows he is dying - he acknowledges it, which is not the same as accepting it. And the knowledge of his imminent death is all he needs: he is content to proceed on that basis, because the acknowledgement allows him to be calm. And so life goes on, until it doesn&#8217;t. It&#8217;s that simple for James. Anything else seems silly to him, and futile. He is alive, and cooking supper in our kitchen, until such time as he&#8217;s not. </p><p>And that&#8217;s it, really.</p><p></p>]]></content:encoded></item><item><title><![CDATA[Which one of us is mad?]]></title><description><![CDATA[The one with the brain tumour or the one with brain fog?]]></description><link>https://erinbaker1001.substack.com/p/which-one-of-us-is-mad</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/which-one-of-us-is-mad</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Mon, 24 Aug 2026 15:55:08 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!yPIs!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3d71ae8b-24ca-47ee-913a-61751c03114f_4032x3024.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" 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/__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3d71ae8b-24ca-47ee-913a-61751c03114f_4032x3024.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!yPIs!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3d71ae8b-24ca-47ee-913a-61751c03114f_4032x3024.jpeg 1456w" sizes="100vw" fetchpriority="high"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p style="text-align: center;"><strong>(</strong><em><strong>Me and Blue-Badge finder, on holiday this summer.</strong></em><strong>)</strong></p><p>One of us is going through cancer and one of us is going through menopause, and we&#8217;re both mad as a result. </p><p>If proof of this was needed, we lose our Blue Badge somewhere in the house, and despite turning the house upside down, no one can find it for days. </p><p>Those of you have have one of these little miracle slips of plastic will know that it is a passport to Heaven, otherwise known as Park Where The Hell You Like. I literally cannot believe how it has transformed my life since James got sick and the hospice helped us apply for one. It means we can get a disabled spot in the train station carpark for the daily radiotherapy trip near the lift, we can park on the double yellows on the hill outside the pharmacy for more chemo and park near the restaurant door when going to see mates for lunch, knowing we have an easy getaway after an hour or so, as he starts to get exhausted or his head starts to thump. </p><p>I must also admit that I would rather stick pins in my eyes twice a day for a year than pay for parking. I see paid parking as one of life&#8217;s greatest iniquities. A moral injustice against which I must wage a one-woman crusade, cruising the streets relentlessly until one of the few free spots become available (we&#8217;ll ignore the fact that I probably pay out more in petrol costs for circling towns fruitlessly than I would have done in just paying to park in the first five minutes - it&#8217;s the principle). Also see: the stress of circling a full carpark like it&#8217;s the rim of doom and you&#8217;re a penny about to tip into its bowl, forever spiralling, never finding a place to park, going slowly mad with the hell of it. </p><p>See how much I love the glorious Blue Badge? See why I was so distressed when we lost it? It is precisely this sort of crisis that tips me over the edge. Not the &#8220;my-partner-is-dying&#8221; crisis - those are the big ones and I can gear myself up and gather inner strength I never knew I had to deal with it all. But the stress of losing the Blue Badge, or my phone, or keys, fries the innards of my head like an egg in a pan. Something splits in my brain and I fizz and burn with the heat of it.</p><p>So it was with more than a modicum of relief that I watched my 13 year old saunter casually into the lounge a few days later, where James and I sat watching TV, and ask innocently: &#8220;Isn&#8217;t this your Blue Badge?&#8221; as he waved the plastic card in the air. I wept silent, internal thanks. &#8220;Where&#8221;, I enquired as casually as I could, &#8220;did you find that?&#8221;</p><p>&#8220;Oh, the biscuit jar&#8221; he shrugged.</p><p>See? Brain tumour versus menopause - it could easily have been either of us. It might be the first time we&#8217;ve felt instinctively on the same page since the diagnosis.</p>]]></content:encoded></item><item><title><![CDATA[How to have a great mini break when you’re dying]]></title><description><![CDATA[A truly ace time making memories]]></description><link>https://erinbaker1001.substack.com/p/how-to-have-a-great-mini-break-when</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/how-to-have-a-great-mini-break-when</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Fri, 21 Aug 2026 17:55:20 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!MVKM!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe6c66b27-a0e8-476b-ab3b-297755111418_3088x2316.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p>We take all four of our teenage boys (17, 16, 15 and 13) to Bath for three nights in the February half term. This is ostensibly so that James&#8217;s oldest son can look round Bath Uni, which is on his long list of prospective places to study. Only, when we get there and James suggests seeing if he and his son can book a visit, his son remarks that we can just drive past the entrance and he can catch the vibe from the car. Don&#8217;t you just love teenagers?</p><div class="image-gallery-embed" data-attrs="{&quot;gallery&quot;:{&quot;images&quot;:[{&quot;type&quot;:&quot;image/jpeg&quot;,&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/e6c66b27-a0e8-476b-ab3b-297755111418_3088x2316.jpeg&quot;},{&quot;type&quot;:&quot;image/jpeg&quot;,&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/83fc8993-3ff4-4bcf-ab97-fa5bc6890829_3088x2316.jpeg&quot;},{&quot;type&quot;:&quot;image/jpeg&quot;,&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/e6d17ec1-510c-4b81-9fe1-e0098ce9ecab_4032x3024.jpeg&quot;},{&quot;type&quot;:&quot;image/jpeg&quot;,&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/146375c6-0b7d-4425-a008-4587d038918a_3088x2316.jpeg&quot;}],&quot;caption&quot;:&quot;&quot;,&quot;alt&quot;:&quot;&quot;,&quot;staticGalleryImage&quot;:{&quot;type&quot;:&quot;image/png&quot;,&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/90cc8483-39cb-494f-ace6-d570a16a2f35_1456x1456.png&quot;}},&quot;isEditorNode&quot;:true}"></div><p>Secretly, everyone is more than happy with that arrangement. James is absolutely knackered from the radiotherapy still and needs to spend chunks of each afternoon sleeping in our hotel bed. The boys just want to hit Zara and Urban Outfitters because, you know, when you&#8217;re in an ancient Roman city that is world famous and stuffed with history, what else is there to do?</p><p>Obviously, before James has to go back to bed and the boys have to spend more of my money, I make us all do the Roman Baths tour. In a complete family role reversal, it is James who gets bored and ducks out early to find somewhere to sit with a decent coffee while my 15 year old, who weirdly loves Latin GCSE, becomes absorbed in translating inscriptions on bits of stone. Well, that, and tailgating a 16 year old blonde girl he discovered behind a pillar half way round.</p><p>After that, we have a further two wonderful days of letting everyone do what they want to do around Bath. I find us great restaurants for dinner that don&#8217;t require James to walk more than 10 minutes from the hotel, and James and I stumble across the insanely brilliant book shop, Topping and Company Booksellers of Bath, one evening after a bowl of pasta by the river, which is open until 9pm every night. I buy a pocket book of philosophy for one son who wants to study it for A-level, and another boy buys The Secret Barrister, while the youngest strokes a Bernese Mountain Dog that has wandered in. A very chilled, very happy evening all round. In fact, the entire trip is one of those perfect family holidays when everyone is on form, no one argues, and you wonder why life can&#8217;t be like this more often. Importantly, I think it is a great memory banked for us all, for the future.</p><div><hr></div><p>When we get back, a friend of ours called Jeremy pops round for coffee. James is upstairs, taking ages to have a quick shower - everything takes ages now. On his way in, Jeremy comments teasingly on the dead flowers which I have flung out of the kitchen window, on their way to the garden recycling bin, and which lie scattered on the ground outside the kitchen door.</p><p>When James appears, and I tell him what Jeremy said about the wilted flowers on the ground, James comments: &#8220;You should have told him I died four days ago&#8221;. THIS is what I&#8217;m talking about, I say. You and I have to temper our humour - not everyone is finding us as hilarious as we do. No wonder we keep getting such odd looks.</p><div><hr></div><p></p>
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   ]]></content:encoded></item><item><title><![CDATA[Writing our last Valentine’s Day cards ever]]></title><description><![CDATA[A heartbreaking moment in the supermarket]]></description><link>https://erinbaker1001.substack.com/p/writing-our-last-valentines-day-cards</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/writing-our-last-valentines-day-cards</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Sat, 15 Aug 2026 21:45:06 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!Uczp!,w_256,c_limit,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F994cee87-8402-4b8e-ab52-c2a795d62ae2_1280x1280.png" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p></p><p>Browsing the supermarket shelves for a Valentine&#8217;s Day card is the most heartbreaking moment so far since James got his terminal diagnosis. It&#8217;s the realisation that it will probably be the last one I ever buy him and write a message in, and it&#8217;s the horrible juxtaposition of this truth with its utterly indifferent surroundings: the stationary aisle of a supermarket at 8.30am on a week day.</p><p>It&#8217;s so profoundly awful, I don&#8217;t know what to do with this thought so I just decide to put it down where I&#8217;m standing and move on.</p><p>I give the card to him later that day and he is typically underwhelmed, which is par for the course for us. Crushingly, weeks after he dies, I find his to me in his bedside drawer. On it is a National Trust photo of our favourite tarn in the Lake District. I open it, my heart hammering. Inside he has written:</p><p>&#8220;Dear Erin&#8221;</p><p>The rest is left blank for another day when he has more strength, which will never come. Still, as his best mate remarked, it&#8217;s a strong start.</p><div><hr></div><p>James wants to get things done. This means day trips to see towns, buildings and events that have twitched his curiosity. Margate and Hastings are high up the list. I&#8217;ve offered him mini breaks in the UK&#8217;s finest hotels but he finds the idea of luxury distasteful and irrelevant. Instead, top of his list is a new obsession, founded on the daily train journey to London for his radiotherapy. He&#8217;s become transfixed by a hill he passes that sits just outside Sevenoaks, next to the M25, and he wants to find a path there and walk up it. It has the distinct look of an overgrown motorway embankment to me, with a nasty tangled bit of wooded scrubland. I see no path, no possible view and no potential for beauty. But he wants to explore it, so one Monday we bloody do.</p><p>And blow me down if there isn&#8217;t a footpath right where he thinks there might be. We have to duck under branches and he&#8217;s not steady on his feet, tripping over roots and brambles. But we find our way to a clearing of sorts, with half a view through the trees to the Medway valley and the mellifluous soundtrack of cars at rush hour. On any other day, in any other life, this would be pretty much the most anticlimactic and mediocre walk I&#8217;ve ever been on, but it&#8217;s perfect in its simplicity and purity of intention, and we grin at each other and feel Pleased with ourselves. Who needs Estelle Manor when you can have a bit of wasteland next to Junction 5 of the M25?</p><p></p>]]></content:encoded></item><item><title><![CDATA[Lessons on dying]]></title><description><![CDATA[You have to learn to put down the burden]]></description><link>https://erinbaker1001.substack.com/p/lessons-on-dying</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/lessons-on-dying</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Tue, 11 Aug 2026 15:57:22 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!_rgo!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fccd062a2-8706-4ae4-8b8b-1913fb4ec8f4_4032x3024.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p></p><div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!_rgo!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fccd062a2-8706-4ae4-8b8b-1913fb4ec8f4_4032x3024.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!_rgo!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fccd062a2-8706-4ae4-8b8b-1913fb4ec8f4_4032x3024.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!_rgo!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, 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xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p><em>(James in Skiathos, 2024, looking handsome)</em></p><p>&#8220;Our suffering is believing there&#8217;s a way out&#8221; writes Mel Weitsman, a Zen teacher. </p><p>Isn&#8217;t it just. I&#8217;ve been constantly scanning either for an exit from, or a solution to, this nightmare of James&#8217;s terminal diagnosis since it began three months ago. And the problem with permanent scanning, is that it drains the battery. I am exhausted in a very new way: my blood and bones feel bleached, dried up. Everything aches or cramps: I&#8217;ve got a weird stitch under my right ribs when I drive, my chest is heavy, my lungs husky and my legs, when I try to move them one after the other - or walk, as it&#8217;s otherwise known - feel constricted in their range, as if I&#8217;ve got one of those rubber exercise bands wrapped round my thighs. Talk about &#8220;The body keeps the score&#8221;. I picture the guy in our village who sits at a trestle table and writes down the runs and wickets in our cricket matches when I hear that phrase. In the case of my body, he&#8217;d be constantly scribbling, as run after run piles on the ledger.</p><p>James, meanwhile, has a new source of frustration. He is fed up with people that hold onto anger. That includes me, regarding his ex-wife; his ex-wife herself for constantly moaning that life is unfair; his brother, regarding everything but especially battles with his own ex-wife; his son for something that&#8217;s happened at school&#8230;. James says he is disgusted at the futility of us all holding on to anger. He says it is essentially narcissistic self absorption, and talks about &#8220;the ego of anger&#8221; - that we all feel we fundamentally deserve better treatment, when perhaps none is due. I can see it, but half of me thinks no one without a terminal diagnosis is going to let go of anger, since we&#8217;ve all still got skin in the game and battles to fight. Also: before his brain tumour, he was probably the angriest person I&#8217;ve ever met, so I tell him it&#8217;s a slightly hypocritical observation. He can now let go because he needs to, if he wants to die a peaceful and calm death, which is his aim. I on the other hand, want to batter pretty much everyone senseless.</p><div><hr></div><p>I&#8217;ve been diving into what everyone else has to say on the matter of dying and grief. CS Lewis and Joan Didion both reference the exhaustion of remembering again and again, which happens when you live with the anticipatory grief of your loved one dying in front of you and which, I suppose, also happens after they&#8217;re gone: we wake up and remember afresh. We watch TV then remember; laugh then remember; meet a friend for dinner then remember; drive home then remember; sing a song then remember. The act of being called constantly back to James dying creates an almighty ache at the back of my head, as if that is where the line is attached, and some hand of God keeps jerking it back.</p><p>Robert McCrumb points out in his book that grief is about acceptance (of the death), which itself foreshadows death because when we die at the end of life, we are not transmitting or talking: we are passive, listening and accepting, not giving. This also rings true to me, for grief does indeed seem to be its own death: a bit of us does die inside, as we become bystanders in a catastrophe that has taken over our bodies. We stand to the side and watch it consume us, and have no words or energy to embody it and give it an active voice.</p><p>I turn, one evening, to the excellent, and so very helpful, &#8220;The Wild Edge of Sorrow&#8221; by Francis Weller, given to me by Helen, an NCT friend in Brighton. I think it is Weller who cites Houn Jiyu-Kennett, the British zen master. Her teaching style, Weller writes, &#8220;was not to lighten the burden of the student but to make it so heavy that she or he would put it down&#8221;.</p><p>Put this down, Baker, I think to myself. It is too much to hold. Put it down and rest. Let it become what it will become. Walk alongside it, for sure, but you can&#8217;t change it, divert it, nudge it off course or steer it in another direction. Just hold James&#8217;s hand and walk alongside it together, to its inevitable destination.</p><p></p>]]></content:encoded></item><item><title><![CDATA["What shall I wear in my coffin?"]]></title><description><![CDATA[Is there ever a good time to have this discussion....]]></description><link>https://erinbaker1001.substack.com/p/what-shall-i-wear-in-my-coffin</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/what-shall-i-wear-in-my-coffin</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Mon, 10 Aug 2026 21:02:46 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!HjC8!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe9622eee-a84d-4976-8d20-a720e0a6813c_4032x3024.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!HjC8!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe9622eee-a84d-4976-8d20-a720e0a6813c_4032x3024.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!HjC8!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe9622eee-a84d-4976-8d20-a720e0a6813c_4032x3024.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!HjC8!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, 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src="/__u/substackcdn.com/image/fetch/$s_!HjC8!,w_1456,c_limit,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe9622eee-a84d-4976-8d20-a720e0a6813c_4032x3024.jpeg" width="1456" height="1941" data-attrs="{&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/e9622eee-a84d-4976-8d20-a720e0a6813c_4032x3024.jpeg&quot;,&quot;srcNoWatermark&quot;:null,&quot;fullscreen&quot;:null,&quot;imageSize&quot;:null,&quot;height&quot;:1941,&quot;width&quot;:1456,&quot;resizeWidth&quot;:null,&quot;bytes&quot;:3529231,&quot;alt&quot;:null,&quot;title&quot;:null,&quot;type&quot;:&quot;image/jpeg&quot;,&quot;href&quot;:null,&quot;belowTheFold&quot;:false,&quot;topImage&quot;:true,&quot;internalRedirect&quot;:&quot;https://erinbaker1001.substack.com/i/210659785?img=https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe9622eee-a84d-4976-8d20-a720e0a6813c_4032x3024.jpeg&quot;,&quot;isProcessing&quot;:false,&quot;align&quot;:null,&quot;offset&quot;:false}" class="sizing-normal" alt="" srcset="/__u/substackcdn.com/image/fetch/$s_!HjC8!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe9622eee-a84d-4976-8d20-a720e0a6813c_4032x3024.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!HjC8!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe9622eee-a84d-4976-8d20-a720e0a6813c_4032x3024.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!HjC8!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe9622eee-a84d-4976-8d20-a720e0a6813c_4032x3024.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!HjC8!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe9622eee-a84d-4976-8d20-a720e0a6813c_4032x3024.jpeg 1456w" sizes="100vw" fetchpriority="high"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p></p><p>James has developed an uncanny knack of bringing up the subject of his death at the worst possible moments for me. Not that there&#8217;s a good time, let&#8217;s be clear, but 6.30pm on a Sunday evening, in the middle of BBC1&#8217;s Countryfile, while I&#8217;m dashing past him on the sofa with armfuls of school games kit for the boys&#8217; bags, is not, shall we say, OPTIMAL.</p><p>This time, it&#8217;s some meandering, off-the-cuff jokes, out of the blue, about him in his coffin - what he&#8217;s been thinking he&#8217;ll wear in the coffin, and his thought that I&#8217;ll rip his choice of outfit off him before they nail down the lid if it&#8217;s too expensive (one of his running jokes is about how tight I am when it comes to spending money). He has one of those fancy-dress jockey outfits where it looks like you&#8217;re riding the horse, which he bought to host a charity race night a few years ago (found the photo - happy days! - above).  He suggests going in that (like he&#8217;s &#8220;going&#8221; to a party), or, he quips, a sort of Rod Hull&#8217;s Emu outfit. </p><p>I smear some sort of rictus grin across my face even as hot tears are swamping my eyes, boys&#8217; school sports kit still in my arms. &#8220;Ha&#8221;, I mutter feebly, as I speed towards the kitchen so he doesn&#8217;t see the tears carve yet more dark streaks down my cheeks. I don&#8217;t want him to see his comments upset me because a) he might stop talking about it to me, and I don&#8217;t want to deny him the chance to air all his thoughts about death, to feel less alone; and b) something tells me it&#8217;s so, so important to try to be on the same page as him through this journey, otherwise he travels this road alone, and I can&#8217;t possibly bear that thought.</p>
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   ]]></content:encoded></item><item><title><![CDATA[Rows about the will, the funeral and the ex ]]></title><description><![CDATA[The truth about dying is that peace, the one thing that should surround us, can be hard to come by]]></description><link>https://erinbaker1001.substack.com/p/rows-about-the-will-the-funeral-and</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/rows-about-the-will-the-funeral-and</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Sat, 08 Aug 2026 20:38:22 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!JYPh!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F19641f39-0fed-4c9f-b57b-df5dbd4d0758_3088x2316.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p></p><p>It&#8217;s January 2026 and I&#8217;m away from home for work. It feels wrong: James and I are missing out on time together when we have so little time left (although the beauty of a terminal diagnosis is it&#8217;s anyone&#8217;s guess how long we do actually have: one month or one year? The mean is 18 months, and we&#8217;ve had three so far. Doctors and consultants no longer like to even take a stab at a ballpark figure, since that one random guy so kindly sued the NHS for getting his prognosis wrong, so that he spent all his money and then lived a bit longer and had nothing with which to finance his miraculous gift of more time - goddam it, don&#8217;t you just hate it when you end up living longer than the medics predicted?). </p><div class="image-gallery-embed" data-attrs="{&quot;gallery&quot;:{&quot;images&quot;:[{&quot;type&quot;:&quot;image/jpeg&quot;,&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/19641f39-0fed-4c9f-b57b-df5dbd4d0758_3088x2316.jpeg&quot;},{&quot;type&quot;:&quot;image/jpeg&quot;,&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/347ab115-4dad-41c4-b215-13e184885616_4032x3024.jpeg&quot;},{&quot;type&quot;:&quot;image/jpeg&quot;,&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/b078bf67-657a-4b7f-ba0b-375ac4b6411b_4032x3024.jpeg&quot;},{&quot;type&quot;:&quot;image/jpeg&quot;,&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/c6a42831-b60f-4274-80cb-289854b62f6f_4032x3024.jpeg&quot;},{&quot;type&quot;:&quot;image/jpeg&quot;,&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/94c51a98-9e9c-43f5-ab35-c3757edb3d51_3088x2316.jpeg&quot;}],&quot;caption&quot;:&quot;Yorkshire, January 2026&quot;,&quot;alt&quot;:&quot;Erin James and Aston Martin DBX S&quot;,&quot;staticGalleryImage&quot;:{&quot;type&quot;:&quot;image/png&quot;,&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/d97b8eb6-9ee6-445f-83dc-349eac00d4d6_1456x1210.png&quot;}},&quot;isEditorNode&quot;:true}"></div><p>But, I am the sole earner, so I have to go where the work is, especially since James has to keep shelling out money to his ex-wife, despite the fact he has no income and is dying on the little he has left (we&#8217;re literally talking hundreds of pounds in his bank account, not even thousands). The ex-wife has been seemingly allergic to full-time work since they divorced, 12 years ago.  So I keep working my arse off, for now, and James keeps living, for now.</p><p>Driving back from the work trip, I remember the nightmare I had with a flat tyre at midnight in the pouring rain a few weeks before, on a country lane, with no phone reception. I had flagged a car down (luckily with a woman driving) and she took me to where I could get reception and call James, who leapt out of bed and came out to save me. I wept when I saw him rounding the corner in his Peugeot with a cheery wave and flash of his headlights between swipes of the windscreen wipers. </p><p>Who will save me when I have a puncture, after he&#8217;s gone? This thought is appalling and stops me in my tracks, my mouth slightly agape. It seems, in its singular awfulness, to sum up the vulnerability, loneliness and sheer fear his death invokes in me. It&#8217;s a roar of fire that erupts from my stomach and guts everything from there to my hair, leaving me hollowed out, a shell filled with dry, grey ashes where my blood used to flow. I&#8217;m a whisper, a whimper; I crumble to dust where I stand. No one notices.</p>
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   ]]></content:encoded></item><item><title><![CDATA[Talking about dying is not a negative thing!]]></title><description><![CDATA[Terminally ill people, and their partners, need to be able to discuss it.]]></description><link>https://erinbaker1001.substack.com/p/talking-about-dying-is-not-a-negative</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/talking-about-dying-is-not-a-negative</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Mon, 03 Aug 2026 20:17:05 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!HBHB!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe68fee8c-17a1-4bbf-bffb-1f37b3be6fea_828x624.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!HBHB!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe68fee8c-17a1-4bbf-bffb-1f37b3be6fea_828x624.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!HBHB!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe68fee8c-17a1-4bbf-bffb-1f37b3be6fea_828x624.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!HBHB!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe68fee8c-17a1-4bbf-bffb-1f37b3be6fea_828x624.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!HBHB!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe68fee8c-17a1-4bbf-bffb-1f37b3be6fea_828x624.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!HBHB!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe68fee8c-17a1-4bbf-bffb-1f37b3be6fea_828x624.jpeg 1456w" sizes="100vw"><img src="/__u/substackcdn.com/image/fetch/$s_!HBHB!,w_1456,c_limit,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe68fee8c-17a1-4bbf-bffb-1f37b3be6fea_828x624.jpeg" width="828" height="624" data-attrs="{&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/e68fee8c-17a1-4bbf-bffb-1f37b3be6fea_828x624.jpeg&quot;,&quot;srcNoWatermark&quot;:null,&quot;fullscreen&quot;:null,&quot;imageSize&quot;:null,&quot;height&quot;:624,&quot;width&quot;:828,&quot;resizeWidth&quot;:null,&quot;bytes&quot;:192692,&quot;alt&quot;:null,&quot;title&quot;:null,&quot;type&quot;:&quot;image/jpeg&quot;,&quot;href&quot;:null,&quot;belowTheFold&quot;:false,&quot;topImage&quot;:true,&quot;internalRedirect&quot;:&quot;https://erinbaker1001.substack.com/i/209680251?img=https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe68fee8c-17a1-4bbf-bffb-1f37b3be6fea_828x624.jpeg&quot;,&quot;isProcessing&quot;:false,&quot;align&quot;:null,&quot;offset&quot;:false}" class="sizing-normal" alt="" srcset="/__u/substackcdn.com/image/fetch/$s_!HBHB!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe68fee8c-17a1-4bbf-bffb-1f37b3be6fea_828x624.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!HBHB!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe68fee8c-17a1-4bbf-bffb-1f37b3be6fea_828x624.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!HBHB!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe68fee8c-17a1-4bbf-bffb-1f37b3be6fea_828x624.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!HBHB!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fe68fee8c-17a1-4bbf-bffb-1f37b3be6fea_828x624.jpeg 1456w" sizes="100vw" fetchpriority="high"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p>(On a work trip with Lamborghini circa 2016&#8230;)</p><p>Late December 2025. My sons, mum and I go to London to watch Oliver! the musical at the theatre. There&#8217;s a couple sitting next to me and the man puts his hand on his wife&#8217;s thigh, like James has always done with me at the cinema, his hand resting comfortably on my thigh. I watch Fagan on stage, cheerily singing &#8220;You&#8217;ve got to pick a pocket or two&#8221;, with tears rolling silently down my cheeks, trying to block out the couple from my peripheral vision.</p><div><hr></div><p>It&#8217;s New Year&#8217;s Eve. Forget it. It&#8217;s worse than Christmas. I don&#8217;t want to look forwards and I don&#8217;t want to look back. I&#8217;m stuck in the most immediate present, my eyes cast rigidly to the ground, not daring to look beyond a metre in any direction. The restricted present resembles a yellow puddle of light cast by a street lamp at night, illuminating a patch of pavement at my feet, beyond which lies the terrifying darkness of the future. </p><p>On New Year&#8217;s Day, we sit watching TV in evening, and the pall cast by the night before has not lifted. I&#8217;m finding time so hard in its relentless journey on: tick, tick, tick goes my watch. I want to pause time so I can come to terms with this truth, and life as it now stands; come to peace with it, but there is nothing to solve, nothing to come to terms with. Time is just marching on, even as I sit rigidly, miserably on the sofa, regardless of my input. It neither slows down or speeds up, it just ticks and tocks, mockingly.</p><div><hr></div><p>On January 5 I am back in a deserted London NHS hospital corridor on a dark winter&#8217;s Tuesday afternoon at 4pm, but this time it&#8217;s with Josh, my 15-year-old, for an EEG to determine the cause of his seizure before Christmas. January should be my month away from hospitals, as James has no treatment until January 29. I utterly loathe being back in the echoing medical corridors, feeling tired and anxious, and a long way from home. I have to sit and watch him go through a brutal round of assessments with induced sleep, strobe lighting in his eyes and induced hyperventilation to see how his brain responds to the different stresses. We are both hungry, exhausted and feel sick with tension when we leave at 6pm for the long train journey back home in the rain.</p><p>Three days later, Josh is indeed diagnosed with epilepsy and I receive the news from the consultant in a brief phone call between his meetings. My son is in the middle of his mock GCSEs however, so I decide to wait until they&#8217;re over to tell him. It&#8217;s just another small load to carry - I now resemble the Bethlehem donkey after Christmas, when everyone else has buggered off with their new presents and celebrations, still carrying the rugs and straw across the desert, alone, a beast of burden.</p><div><hr></div><p>My dreams are haunted by a popular girl I knew at school, whose Instagram grid is a ridiculous digital patchwork quilt of happiness and perfection: the skiing photos of her, her handsome and wealthy husband and their three Boden-clad children are interspersed with the kids in their private school uniforms standing on the chequerboard pathway outside the Georgian front door to their south-west London mansion, and - I kid you not - a photo of the five of them, in height-descending, blonde-head-bobbing order, stepping off a private seaplane onto a boardwalk in Mauritius. &#8220;You never know what goes on behind closed doors&#8221; says one friend when I mention it. </p><p>It sure as shit isn&#8217;t as bad as what&#8217;s going on behind mine.</p>
      <p>
          <a href="/__u/erinbaker1001.substack.com/p/talking-about-dying-is-not-a-negative">
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   ]]></content:encoded></item><item><title><![CDATA[Christmas when you’re dying]]></title><description><![CDATA[I know it&#8217;s summer now, but this is how last Christmas panned out]]></description><link>https://erinbaker1001.substack.com/p/christmas-when-youre-dying</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/christmas-when-youre-dying</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Sun, 02 Aug 2026 08:18:30 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!lfwE!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F22a668a0-29f4-44ea-a635-afefbd250325_3088x2316.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p></p><div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!lfwE!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F22a668a0-29f4-44ea-a635-afefbd250325_3088x2316.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!lfwE!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F22a668a0-29f4-44ea-a635-afefbd250325_3088x2316.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!lfwE!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F22a668a0-29f4-44ea-a635-afefbd250325_3088x2316.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!lfwE!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F22a668a0-29f4-44ea-a635-afefbd250325_3088x2316.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!lfwE!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F22a668a0-29f4-44ea-a635-afefbd250325_3088x2316.jpeg 1456w" sizes="100vw"><img src="/__u/substackcdn.com/image/fetch/$s_!lfwE!,w_1456,c_limit,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F22a668a0-29f4-44ea-a635-afefbd250325_3088x2316.jpeg" width="2316" height="3088" data-attrs="{&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/22a668a0-29f4-44ea-a635-afefbd250325_3088x2316.jpeg&quot;,&quot;srcNoWatermark&quot;:null,&quot;fullscreen&quot;:null,&quot;imageSize&quot;:&quot;normal&quot;,&quot;height&quot;:3088,&quot;width&quot;:2316,&quot;resizeWidth&quot;:null,&quot;bytes&quot;:0,&quot;alt&quot;:null,&quot;title&quot;:null,&quot;type&quot;:&quot;&quot;,&quot;href&quot;:null,&quot;belowTheFold&quot;:false,&quot;topImage&quot;:true,&quot;internalRedirect&quot;:null,&quot;isProcessing&quot;:false,&quot;align&quot;:null,&quot;offset&quot;:false}" class="sizing-normal" alt="" srcset="/__u/substackcdn.com/image/fetch/$s_!lfwE!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F22a668a0-29f4-44ea-a635-afefbd250325_3088x2316.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!lfwE!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F22a668a0-29f4-44ea-a635-afefbd250325_3088x2316.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!lfwE!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F22a668a0-29f4-44ea-a635-afefbd250325_3088x2316.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!lfwE!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F22a668a0-29f4-44ea-a635-afefbd250325_3088x2316.jpeg 1456w" sizes="100vw" fetchpriority="high"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p></p><p>Some friends and family haven&#8217;t been with me on this journey for the past month so I&#8217;ve now left them behind. It&#8217;s not a bitter thing or an angry thing, but too much has happened for the question of &#8220;how are you?&#8221; to be anything other than deeply annoying. Where do you want me to start? Something horrible happens every single day and you&#8217;ve missed too many of those days. I can&#8217;t even answer just for today, because today is informed by all those other days that went before it. So I&#8217;ll just say &#8220;OK&#8221; and move past you, if that&#8217;s ok. By asking me &#8220;How are you?&#8221; you&#8217;re putting the burden back on me to fill you in on all the days you couldnt be bothered to make contact, or were too busy with more pressing things. I&#8217;m not going to absolve you of that responsibility by filling you in. And I don&#8217;t have the energy or time.</p><div><hr></div><p>James can&#8217;t remember some places and people&#8217;s names and is mildly concerned, but then neither can I. Menopause v brain tumour. It&#8217;s a tough one. Our oncologist says his might be his radiotherapy irritating the brain. As for mine&#8230; I think it&#8217;s just being 47 and coping with all this shit on my plate.</p><div><hr></div><p>Lighting a candle is such a powerful metaphor. It&#8217;s December 23 and I sit on a pew in our village church and watch one flicker in a draft. Such a tiny fragile thing but it really does vanquish the darkness that&#8217;s all around it.</p><div><hr></div><p>There&#8217;s an owl hooting somewhere in one of the trees that stand in the field behind my house. It&#8217;s been here for weeks now, and starts up half an hour or so after I go to bed. I love it.</p><div><hr></div><p>I can&#8217;t believe it&#8217;s Christmas. No cards written, no music played, and the bloody &#163;120 tree I bought because I was with the kids and I desperately wanted something magnificent in the house for us all to focus on, will soon come in a couple of weeks. At least there will be no massive comedown after the festivities are over - I&#8217;m already there.</p><div><hr></div><p>On Christmas Eve my lawyer texts at midnight mass (he&#8217;s a workaholic and also one of my angels) to get a deed of variation signed in case anything happened to James. In amongst the Christmas cards, the paperwork confirming I have both lasting powers of attorney for health and wealth turn up in the post. I open everything, numb to it all.</p><div><hr></div><p>In retrospect, Christmas was a break from everything: reality, calls from hospice, the daily trudge to Guys. Only the chemo pills remained. It went so fast - Christmas tree went up, Christmas tree came down. No Christmas Day with the kids because they were all with their other parents (we&#8217;re a blended family) but for first year I wasn&#8217;t sad about that; just grateful to have the day with James not too ill. Only on Boxing Day evening did I feel scared and upset again.</p>]]></content:encoded></item><item><title><![CDATA[Driving a Bentley with a brain tumour]]></title><description><![CDATA[Proof, if proof were needed, that money doesn't buy you happiness]]></description><link>https://erinbaker1001.substack.com/p/driving-a-bentley-with-a-brain-tumour</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/driving-a-bentley-with-a-brain-tumour</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Fri, 31 Jul 2026 11:50:37 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!izjs!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F58fb6988-2a39-457d-90f4-672e29067566_1177x1964.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p></p><div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!izjs!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F58fb6988-2a39-457d-90f4-672e29067566_1177x1964.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!izjs!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F58fb6988-2a39-457d-90f4-672e29067566_1177x1964.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!izjs!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, 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/__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F58fb6988-2a39-457d-90f4-672e29067566_1177x1964.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!izjs!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F58fb6988-2a39-457d-90f4-672e29067566_1177x1964.jpeg 1456w" sizes="100vw" fetchpriority="high"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p>(Sleeping off Christmas Day lunch 2024)</p><p><span>My youngest son, Max, aged 12, plays his first guitar gig at the open-mic night of a local pub. He plays Green Day&#8217;s Good Riddance (Time of Your Life) - &#8220;Another turning point, a fork stuck in the road&#8230;Time grabs you by the wrist, Directs you where to go. So make the best of this test and don&#8217;t ask why&#8230;It&#8217;s not a question but a lesson learned in time&#8230;&#8221; And the heart-breaking line that means I have to leave James and Max&#8217;s brothers in the pub and stand outside sobbing heavily: &#8220;For what it&#8217;s worth, it was worth all the while&#8221;.</span></p><p><span>God, my heart is going to break wide open: perhaps it already has. That line resonates so heavily, like a tolling bell in my heart foreshadowing James&#8217;s death, with a horrible rhythmical ringing thump. For what it&#8217;s worth, it was worth all the pain, all the arguments, the rows, the hurt&#8230; I would take it all again because what we have created has been utterly magical. I&#8217;ve never met anyone like James, never been so proud to call someone my partner, never been so in love or fancied someone so much. And now he is dying and we are nearing the end of this crazy, beautiful, fraught, precious journey.</span></p><p><span>Today I&#8217;m walking through the world carrying the pain of James dying in my chest, and the pain of bruised knees from kneeling on our hardwood lounge floor to keep my oldest son in the recovery position while he had his seizure. Also have a stitch-like pain in my side from carrying the anxiety and fear. All this pain that no one sees. &#8220;So make the best of this test and don&#8217;t ask why&#8221;, commands Green Day. I&#8217;m trying but it&#8217;s like being stuck in wild surf near the beach - every time you go to get up, you get knocked down by another wave and swept under.</span></p><div><hr></div><p><span>Today we scattered the dog&#8217;s ashes, down in the woods, over a little stream he loved to play in, and I thought for the first time about the importance of bearing witness. In the past eight weeks, I have borne witness to my dad&#8217;s death, my partner&#8217;s dying and my son&#8217;s seizure. Bearing witness is perhaps the most important human act we&#8217;re put on Earth to accomplish. It&#8217;s an embodiment of respect, care, acknowledgement, and it validates another&#8217;s existence. What more important role could a human play?</span></p><div><hr></div><p><span>James has only shaved part of his head, round the stitches and the operated part of the skull. It looks awful and we both agree he should wear a hat when out, but then I think: do either of us actually care? The answer is a liberating no. Let him look like shit if he prefers; same for me. How wonderful to have more important things to care about. I try to persuade him to go out without the hat and dance in the street. I&#8217;ll shave my head and join him. What do I care? He says he&#8217;s always wanted me to shave my head: thinks I&#8217;d look really sexy. I love this about him - he has the strength to love what he loves in strong women: he&#8217;s never been bothered by big boobs or thin legs or thick hair&#8230; he just loves a strong, calm woman who can be a true partner in life.</span></p><div><hr></div><p><span>James needs to go back to hospital for more radio so I take him to the station in the beautiful Bentley Bentayga, in Cumbrian Green, that I have in for work, with its silky cream leather and pale wood interior. Bentley and Volvo are his favourite car brands, and for five minutes I&#8217;m so happy that he can be driven around in a Bentley in his last few months. Then, the flip side of the same thought hits me like a brick: that it means nothing. And now I understand, more than ever, with a searing heat, that all the money in the world doesn&#8217;t buy you happiness. For many, this would be a freeing thought: for me it pulls the rug from underneath me, because it reiterates, once more, the immovable </span>e fact that I can throw all the money I have at this crisis and it won&#8217;t make a jot of difference. There is nothing I, or anyone else in the world, can do to make this nightmare stop.</p><p></p><p></p>]]></content:encoded></item><item><title><![CDATA[My son’s seizure]]></title><description><![CDATA[Between my dad&#8217;s death and his funeral, while my partner is dying, my son has a fit]]></description><link>https://erinbaker1001.substack.com/p/my-sons-seizure</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/my-sons-seizure</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Mon, 27 Jul 2026 20:51:18 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!Ywpl!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3291c7b6-8972-40b9-afd1-e48ec4ba1f2d_1600x1200.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p>Just when I thought things literally couldn&#8217;t get worse, Josh, my 16 year old, has a huge seizure out of the blue on a Sunday afternoon at 3pm. It is the very worst thing I have ever witnessed. His head twists up and to the side, his face contorts in what looks like some searing internal torture, he grimaces, groans and violently fits. This has never happened before.</p><div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!Ywpl!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3291c7b6-8972-40b9-afd1-e48ec4ba1f2d_1600x1200.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!Ywpl!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3291c7b6-8972-40b9-afd1-e48ec4ba1f2d_1600x1200.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!Ywpl!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3291c7b6-8972-40b9-afd1-e48ec4ba1f2d_1600x1200.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!Ywpl!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3291c7b6-8972-40b9-afd1-e48ec4ba1f2d_1600x1200.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!Ywpl!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3291c7b6-8972-40b9-afd1-e48ec4ba1f2d_1600x1200.jpeg 1456w" sizes="100vw"><img src="/__u/substackcdn.com/image/fetch/$s_!Ywpl!,w_1456,c_limit,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3291c7b6-8972-40b9-afd1-e48ec4ba1f2d_1600x1200.jpeg" width="1600" height="1200" 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/__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3291c7b6-8972-40b9-afd1-e48ec4ba1f2d_1600x1200.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!Ywpl!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3291c7b6-8972-40b9-afd1-e48ec4ba1f2d_1600x1200.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!Ywpl!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3291c7b6-8972-40b9-afd1-e48ec4ba1f2d_1600x1200.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!Ywpl!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3291c7b6-8972-40b9-afd1-e48ec4ba1f2d_1600x1200.jpeg 1456w" sizes="100vw" fetchpriority="high"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p>His long body goes rigid between the chair and desk at which he is working, and as he starts to slide down, his legs and feet getting tangled in all the charging cables under the desk. He takes the light and computer with him in one deluge of crashes. </p><p>I&#8217;m reading the newspaper, look up, and rush to catch him as he tumbles, stiff and jerking, to the ground where he continues to fit, blood pouring out of his mouth and sweat tumbling down his face. I scream for the other three boys and James for what feels like an eternity. James comes down the stairs, yelling at me to shut up because his brain tumour means he can&#8217;t stand noise. He sees Josh on the ground and calls an ambulance. </p><p>I turn Josh on his side into the recovery position and watch as the blood continues to pour from his mouth. He is struggling against me. My 13-year-old briefly appears in the doorway, murmurs &#8220;Oh&#8221; and beats a hasty retreat. My 18 year old step son untangles the cables as Josh continues to fit and I continue to keep him pinned on his side.</p><p>The ambulance crew appear out of nowhere, just as Josh is beginning to come round. We manage to get him sitting up and it becomes clear that the reason he was struggling against my arms on the ground is because he has badly dislocated his shoulder, which I have been pushing on. Sums up what feels like my inability to effectively care for anyone in our house, or soothe anyone&#8217;s pain.</p><p>We load him onto the trolley, and before I follow the clattering wheels down our garden path to the ambulance, I clasp my hands on my head and stare at my mother, who has come to get my younger son. I cannot actually believe this is my life at the moment. What next? I&#8217;m now permanently in the brace position. </p><p>For the 10th time in two weeks, I find myself in a hospital ward. Josh is high on ketamine which, being 16, he thinks is the coolest thing ever, and it takes four orthopaedic surgeons a few minutes of wrestling with his shoulder using sheets and traction to get it back in. It is midnight. I can&#8217;t even comprehend what I feel any more. Actually, that&#8217;s wrong: I know exactly what I feel. Absolutely nothing. I am gone, departed. Erin has left the building.</p>]]></content:encoded></item><item><title><![CDATA["Do I look like someone with cancer?"]]></title><description><![CDATA[Candles, cancer and couples therapy... all the fun Cs.]]></description><link>https://erinbaker1001.substack.com/p/do-i-look-like-someone-with-cancer</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/do-i-look-like-someone-with-cancer</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Fri, 24 Jul 2026 15:34:29 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!sAIu!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7b758cec-8b14-455b-a9f5-1ad75928542b_1320x1724.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p></p><div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!sAIu!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7b758cec-8b14-455b-a9f5-1ad75928542b_1320x1724.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!sAIu!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7b758cec-8b14-455b-a9f5-1ad75928542b_1320x1724.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!sAIu!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, 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/__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7b758cec-8b14-455b-a9f5-1ad75928542b_1320x1724.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!sAIu!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7b758cec-8b14-455b-a9f5-1ad75928542b_1320x1724.jpeg 1456w" sizes="100vw" fetchpriority="high"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" 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y2="14"></line></svg></button></div></div></div></a></figure></div><p>(Caption: James and me with my cousin and her husband, Cornwall, 2017 ish)</p><p>James and I have our first couple&#8217;s therapy session since the diagnosis. We&#8217;ve decided to do it because we are on different pages with the diagnosis: to cut a long story short, he&#8217;s calm and I&#8217;m panicking. And he doesn&#8217;t like my panic, especially with the brain tumour symptoms - he needs peace. So far, we are arguing our way through it with recrimination and tears, which does not seem the optimal use of the months we have left in our relationship.</p><p>Our therapist says how she likes to approach it. Normally, her couples have to take their time looking at what issues have been present for years. I say that ain&#8217;t gonna work here, lady&#8230;.we will have to take a deep breath and be more targeted because we really don&#8217;t have that time. We don&#8217;t even know how much longer James will be emotionally present for the therapy sessions: the tumour has already set up an invisible wall between James&#8217;s brain and the rest of the world, including me. I can&#8217;t seem to find my way past it to get back inside his head and his heart.</p><p>The first session is ok, but not hugely promising: the therapist asks James at one point &#8220;Can you put yourself in Erin&#8217;s shoes to understand her fear?&#8221;, which is the one thing James literally cannot biologically do because the tumour is in the front right lobe, which controls emotion and wipes out empathy. When she asks james that question, he just stares at her and says he doesn&#8217;t understand what she means. &#8220;Oh God&#8221;, I think.</p><div><hr></div><p>It&#8217;s been a few days since we&#8217;ve talked about his diagnosis or illness at all at home. Should we be? Am I wasting time in not addressing it? So tired of having no idea how to deal with any of this. I&#8217;ve got a degree from Cambridge and I can&#8217;t work out the simplest stuff, and I&#8217;m not used to feeling this lost. Am so agitated under my skin. Want to kick something hard, or run until I collapse, but don&#8217;t have the energy to do either, so I just sit, fuming at the futility of my efforts to make anything better, a weak prisoner of life.</p><div><hr></div><p>James asks me if he looks like someone with cancer. It&#8217;s the first time I&#8217;ve heard him say the word &#8220;cancer&#8221;. I can honestly say no, he just looks tired. We&#8217;ve settled into a routine of me only bothering him about taking his pills every other day, as opposed to four times a day, because he shouts at me when I remind him. For some stupid, obstinate reason, he views my nudges as criticism, or me pointing out &#8220;yet another failure&#8221; as he puts it, as opposed to me just trying to keep him alive. But he keeps forgetting to take them, in particular the steroids which are all that stand between him living and his brain exploding inside his skull. In the end, after days of being yelled or eye-rolled at when I remind him, I decide if he misses a key pill, he misses it. I&#8217;m done with being shouted at or snapped at.</p><div><hr></div><p>My sons and I light a candle in Frant village church for Dad, which makes me feel sad, but also better because the moment gives me space and peace to get in touch with my emotions briefly, as opposed to crisis management 24/7. Our vicar, Brendan, also says some beautiful words. Then it&#8217;s all packed away and back in the box, as we step outside into the evening dusk, for the kids and James.</p><p>Speaking of lights, I put the Christmas tree lights on in the hallway at 6am every morning before the kids come down. Not because I&#8217;m happy or Christmassy, but because I hope that the little lights will carry all the hope that I don&#8217;t have for us all. </p><p>Light in the darkness has become so important to me right now. The same for all the candles in church. I can&#8217;t bear the darkness, and this is the very worst time of year. I want the little Christmas tree lights to take all the burden, spread light for all of us and banish the darkness that feels so engulfing. They&#8217;re so tiny, but their light is so strong. Imagine that: my entire emotional wellbeing pivoting on the reliability of some B&amp;Q &#163;25 plastic lights.</p><div><hr></div><p>Later in the week, James asks again if he looks like someone with cancer. This time I say cheerily, &#8220;No, you just look really fat and knackered, and generally like a sack of shit&#8221;. He loves me.</p>]]></content:encoded></item><item><title><![CDATA[While James is dying, my dad dies]]></title><description><![CDATA[Yes, that happened.]]></description><link>https://erinbaker1001.substack.com/p/while-james-is-dying-my-dad-dies</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/while-james-is-dying-my-dad-dies</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Wed, 22 Jul 2026 10:21:40 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!WkFi!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f38eaa5-2d98-4e2c-b3d5-5df7d877c63f_640x640.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!WkFi!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f38eaa5-2d98-4e2c-b3d5-5df7d877c63f_640x640.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!WkFi!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f38eaa5-2d98-4e2c-b3d5-5df7d877c63f_640x640.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!WkFi!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f38eaa5-2d98-4e2c-b3d5-5df7d877c63f_640x640.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!WkFi!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f38eaa5-2d98-4e2c-b3d5-5df7d877c63f_640x640.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!WkFi!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f38eaa5-2d98-4e2c-b3d5-5df7d877c63f_640x640.jpeg 1456w" sizes="100vw"><img src="/__u/substackcdn.com/image/fetch/$s_!WkFi!,w_1456,c_limit,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f38eaa5-2d98-4e2c-b3d5-5df7d877c63f_640x640.jpeg" width="640" height="640" 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1272w, /__u/substackcdn.com/image/fetch/$s_!WkFi!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f38eaa5-2d98-4e2c-b3d5-5df7d877c63f_640x640.jpeg 1456w" sizes="100vw" fetchpriority="high"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p></p><p>James can&#8217;t think what a grapefruit is. It&#8217;s on the list I send him to Sainsburys with, and he has to step outside the supermarket to Google it. He is mildly amused, as ever. I am shocked, again.</p><div><hr></div><p>Another day, another massive round of pills in the pill box. The sight of this bloody plastic thing with its cheery primary-school colours reminds me of the sickness and death and my increasing role as carer. I notice that &#8220;carer&#8221; is one letter away from &#8220;career&#8221; and that scares me.</p><div><hr></div><p>Lying in the bath, I wonder how I am going to find the energy to get to know someone again when James dies, and how or why anyone would ever bother getting to know me from scratch again? It takes years of perseverance and love. James knows everything about me: that I like romcoms, I&#8217;m afraid of moths, I like to be in control, my favourite song is Paul Simon&#8217;s Hearts and Bones, I tap too loud on my laptop and I have cold feet all year round that he has to sandwich between his in bed to warm them up&#8230;</p><div><hr></div><p>It&#8217;s really hard to make allowances for somebody who appears to be who they always were. </p><p>All James is missing is his empathy, so I&#8217;m sure his friends think nothing is wrong other than a bit of tiredness, because he can still do banter, intellectual discussion, humour and wit. But they don&#8217;t see the disappearance of his warmth, empathy, love and care, which were his gifts to me and his children. His glitching brain has taken them back inside him and locked them away in a place where we can&#8217;t see them, let alone get at them.</p><div><hr></div><p>I hate the dark outside. It feels overwhelming and the lights are on in all the houses full of families. I feel outside it all as I take a walk round the block one evening. I am swirled around by an invisible, malevolent spirit, in the empty wilds of the darkness.</p><div><hr></div><div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!CMeD!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3d2019cf-3272-41c4-91af-24cc9bad9a67_4032x3024.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!CMeD!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3d2019cf-3272-41c4-91af-24cc9bad9a67_4032x3024.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!CMeD!, 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/__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3d2019cf-3272-41c4-91af-24cc9bad9a67_4032x3024.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!CMeD!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F3d2019cf-3272-41c4-91af-24cc9bad9a67_4032x3024.jpeg 1456w" sizes="100vw" loading="lazy"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p></p><p>We have a very, very special day in London (above) in late November for James&#8217;s early Christmas, in case he&#8217;s not well enough at Christmas itself. I book the private screening room at the Covent Garden Hotel just for the six of us. James picks the film - The Italian Job (original version, of course) and then we wander to Denmark Street where the boys buy LPs in a record shop, and we eat pizza at Rudys for lunch then get the train home before James is too exhausted. It&#8217;s absolutely perfect for all of us.</p><div><hr></div><p>James comes with me to see dad, who lives in Essex. Dad is clearly dying. James waits down the road for hours in a cafe, to give me time with him, which is gorgeous of him - he has nothing other than his phone to occupy him because he can&#8217;t read or listen to podcasts. But he just sits, and waits, with one cup of tea, for ages, while I sit with dad. That is love. I don&#8217;t want to lose him. Or my dad.</p><p>It&#8217;s a strange car journey back home from Essex to Kent - I wonder if James is going to look like my dad looks as he&#8217;s dying, and be in pain like him. My step mother says she&#8217;ll save the wheelchair and hospital bed for me. We compare steroid doses.</p><p>The next day turns out to be a new &#8220;worst day of my life&#8221; - who knew there could be so many? I go back up to dad&#8217;s house, say my goodbyes to him, observe what death looks like and what James&#8217;s death might look like, then return home in time for a hospice meeting at my house with James, where they tell us the hospice ward is undergoing refurbishment for a year so there will be no bed for James if he dies this year. Our options are awful: either he dies at home or in a nursing home. I don&#8217;t want either, cannot bear either. Death at home will mean waiting for nurse visits to deliver higher doses of morphine while he suffers (I&#8217;ve literally just watched that happen for my dad at his home) and our home will turn into a house of death for the kids. But he&#8217;s 53: I can&#8217;t have him in a nursing home either. In the name of God, what the hell am I meant to do now?</p><div><hr></div><p>I have to fly to Dublin for work for two nights. I&#8217;m very teary on the plane. The darkness outside the window is only ok if you&#8217;re going from someone to someone else - it&#8217;s not ok if you&#8217;re on your own.</p><p>The next morning, my aunt calls me in my hotel bedroom at 7.30am to tell me dad has died. I get up, compartmentalise the news, and host Suzuki&#8217;s annual dealer conference, which I flew over to do. </p><div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!WKio!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7f55e90f-17b8-4731-9a0a-bd0196195ee6_4032x3024.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!WKio!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7f55e90f-17b8-4731-9a0a-bd0196195ee6_4032x3024.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!WKio!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7f55e90f-17b8-4731-9a0a-bd0196195ee6_4032x3024.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!WKio!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7f55e90f-17b8-4731-9a0a-bd0196195ee6_4032x3024.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!WKio!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7f55e90f-17b8-4731-9a0a-bd0196195ee6_4032x3024.jpeg 1456w" sizes="100vw"><img src="/__u/substackcdn.com/image/fetch/$s_!WKio!,w_1456,c_limit,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7f55e90f-17b8-4731-9a0a-bd0196195ee6_4032x3024.jpeg" width="1456" height="1941" data-attrs="{&quot;src&quot;:&quot;https://substack-post-media.s3.amazonaws.com/public/images/7f55e90f-17b8-4731-9a0a-bd0196195ee6_4032x3024.jpeg&quot;,&quot;srcNoWatermark&quot;:null,&quot;fullscreen&quot;:null,&quot;imageSize&quot;:null,&quot;height&quot;:1941,&quot;width&quot;:1456,&quot;resizeWidth&quot;:null,&quot;bytes&quot;:2382776,&quot;alt&quot;:null,&quot;title&quot;:null,&quot;type&quot;:&quot;image/jpeg&quot;,&quot;href&quot;:null,&quot;belowTheFold&quot;:true,&quot;topImage&quot;:false,&quot;internalRedirect&quot;:&quot;https://erinbaker1001.substack.com/i/208034798?img=https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7f55e90f-17b8-4731-9a0a-bd0196195ee6_4032x3024.jpeg&quot;,&quot;isProcessing&quot;:false,&quot;align&quot;:null,&quot;offset&quot;:false}" class="sizing-normal" alt="" srcset="/__u/substackcdn.com/image/fetch/$s_!WKio!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7f55e90f-17b8-4731-9a0a-bd0196195ee6_4032x3024.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!WKio!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7f55e90f-17b8-4731-9a0a-bd0196195ee6_4032x3024.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!WKio!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7f55e90f-17b8-4731-9a0a-bd0196195ee6_4032x3024.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!WKio!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7f55e90f-17b8-4731-9a0a-bd0196195ee6_4032x3024.jpeg 1456w" sizes="100vw" loading="lazy"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p>Caption: me and dad, 1978</p><p>I take a quick break at lunchtime to FaceTime dad on my sister&#8217;s phone to say goodbye before his body is collected, while Christmas carols jingle-jangle behind me in the hotel restaurant. </p><p>I fly home to James, who is as sympathetic as he can be. He hugs me, which is unexpected and so nice.</p><p></p>]]></content:encoded></item><item><title><![CDATA[Chemotherapy commences]]></title><description><![CDATA[Into the mouth of the dragon we go]]></description><link>https://erinbaker1001.substack.com/p/chemotherapy-commences</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/chemotherapy-commences</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Mon, 20 Jul 2026 19:54:19 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!rVfn!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fc48aa8e3-33ed-433f-946c-993c07147d00_4284x5408.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p></p><div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!rVfn!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fc48aa8e3-33ed-433f-946c-993c07147d00_4284x5408.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!rVfn!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fc48aa8e3-33ed-433f-946c-993c07147d00_4284x5408.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!rVfn!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, 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/__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fc48aa8e3-33ed-433f-946c-993c07147d00_4284x5408.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!rVfn!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fc48aa8e3-33ed-433f-946c-993c07147d00_4284x5408.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!rVfn!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fc48aa8e3-33ed-433f-946c-993c07147d00_4284x5408.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!rVfn!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fc48aa8e3-33ed-433f-946c-993c07147d00_4284x5408.jpeg 1456w" sizes="100vw" fetchpriority="high"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p>(Caption: James always had a knack for choosing winners&#8230;. Taken about two years ago).</p><p>I keep thinking- eat. It&#8217;s not your cancer. My therapist pulls me up when I say &#8220;we&#8221; or &#8220;our&#8221;. It&#8217;s his illness, not mine, she tells me. I have to protect myself, because I have to keep living. I must keep telling myself that. Eat, drink, sleep, repeat. </p><p>I have a feeling I&#8217;m going to be forced into a new way of living - one day at a time. It&#8217;s very much not me. I am one of life&#8217;s ultra controllers and solution-finders. I always look to the future and plan accordingly. One day at a time&#8230; I don&#8217;t know how, but I have to start learning.</p><div><hr></div><p>Today feels like the shift from simply a list of actions and to-do lists unfolding a terrifying speed, to a more metaphysical challenge of how to deal with life. No idea what the approach is for that one.</p><p>Treatment (radio and chemo) starts today. Radiotherapy is in a mask in hospital, chemo is in pill form at home. It feels like we&#8217;re walking into a cave with a fire-eating dragon and I have no idea how or if James will emerge.</p><div><hr></div><p>I feel I should know how much of his grumpiness and unwillingness to do anything round the house is him, and how much is the tumour, but as time goes on, I&#8217;ve got less idea.</p><p>His pill regime just got insane: 25 a day. I stare, slumped on a stool at our kitchen island, at the pill box that I ordered off Amazon. I feel very claustrophobic and want to run away. It takes me 20 minutes to burst the blister packs of all the pills and sort them into morning and evening doses for the seven days of the week. My thumb actually aches from doing it all. I have an overwhelming urge to fall asleep.</p><p>Friends on the whatsapp group ask if I need anything or there&#8217;s anything they can do. What I want most of all is someone to come and clean my dishwasher or my larder. Or take stuff to the tip. Is that allowed? Instead, I just say: &#8220;thanks, I&#8217;m fine&#8221;.</p><div><hr></div><p>I have a great, strong, productive day getting stuck into work in the office, then an email from our clinical nurse specialist brings me crashing back to reality. So weird when the two worlds collide: like when friends and family meet at your wedding. Very discombobulating. </p><p>Meanwhile, James is an hour late for his radio appointment so they call me. I have no idea where he is as he refuses to share his phone location with me, on the grounds of dignity and maintaining some sense of independence and agency. Which is all very well, but when one of the main symptoms of your tumour is an inability to keep time and make appointments, it&#8217;s incredibly frustrating and worrying for everyone involved.</p><div><hr></div><p>James&#8217;s Pressure headaches are mounting - we have to increase his steroids yet again. He&#8217;s tired and cold and woozy when he walks.</p><p>We have a night away in a London hotel for my Vogue on the Road column. With no sex, we check in at 3pm and he watches shit TV for hours while I lie, cold and alone and tired, reading my book until it&#8217;s time to go out for supper. I wonder how many years it could be before someone cuddles me again.</p><p>We have a wonderful dinner out. But the next morning, James leaves our suitcase on train on the way home, with all his medicines in it including his chemo pills, and my favourite shirt that I bought in LA. He doesn&#8217;t care about any of it, or see why I&#8217;m stressing. I know why: because it will all fall on me to sort out the total shitshow and try to get new chemo the same day despite the pharmacy being back in London in hospital. It&#8217;s the last straw. I feel scoured raw, eviscerated, my top layer of comfort and protection scraped off, everything underneath is exposed, cold and painful. And still I have to put one foot in front of the other. I feel for the first time I absolutely can&#8217;t go on.</p><p></p>]]></content:encoded></item><item><title><![CDATA[Is it ok to argue this much?]]></title><description><![CDATA[We keep rowing when he&#8217;s dying: have to work out how to stop]]></description><link>https://erinbaker1001.substack.com/p/is-it-ok-to-argue-this-much</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/is-it-ok-to-argue-this-much</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Sun, 19 Jul 2026 06:50:42 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!QOnH!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F8b11e5ad-2d5d-4f9c-8634-fbb3f3abfb50_3088x2316.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p></p><div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!QOnH!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F8b11e5ad-2d5d-4f9c-8634-fbb3f3abfb50_3088x2316.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!QOnH!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F8b11e5ad-2d5d-4f9c-8634-fbb3f3abfb50_3088x2316.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!QOnH!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F8b11e5ad-2d5d-4f9c-8634-fbb3f3abfb50_3088x2316.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!QOnH!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F8b11e5ad-2d5d-4f9c-8634-fbb3f3abfb50_3088x2316.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!QOnH!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F8b11e5ad-2d5d-4f9c-8634-fbb3f3abfb50_3088x2316.jpeg 1456w" sizes="100vw"><img 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/__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F8b11e5ad-2d5d-4f9c-8634-fbb3f3abfb50_3088x2316.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!QOnH!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F8b11e5ad-2d5d-4f9c-8634-fbb3f3abfb50_3088x2316.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!QOnH!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F8b11e5ad-2d5d-4f9c-8634-fbb3f3abfb50_3088x2316.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!QOnH!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F8b11e5ad-2d5d-4f9c-8634-fbb3f3abfb50_3088x2316.jpeg 1456w" sizes="100vw" fetchpriority="high"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p></p><p>We&#8217;ve had to up his steroids to keep the brain swelling under control but it&#8217;s making his temper uncontrollable. Now we know what &#8220;roid rage&#8221; is all about. Although, in all honesty, we&#8217;re a couple prone to massive rows anyway - he has a huge temper that flares then dies quickly, and I&#8217;ve become fed up with it over the years and now shout back. You could say it&#8217;s quite a volatile relationship&#8230;. But also so perfect so much of the time. Go figure.</p><p>We go out for dinner with friends in Richmond. Im very worried about him all evening because he left his glasses at Guys hospital and decided to go back for them on the train on his own while I carried on to meet our friends, but he comes back ok, and it turns out Im the one who gets overwhelmed with a stomach ache and tears in the restaurant, and we have to leave early.</p><div><hr></div><p>We spend all morning in our Twickenham hotel after the dinner instead of getting the train home, waiting to hear from Guys whether we have to go back in to hospital first, to do a consent form to join a clinical trial, as we were told yesterday that chemo won&#8217;t be very effective because it is a non-methylated tumour (&#8220;tumour&#8221; keeps rewriting itself as &#8220;tuna&#8221; on my predictive text btw, which is making me smile at least. I wonder what a non-methylated tuna would taste like. Sounds like one without alcohol. What on earth am I thinking about?). </p><p>The new trial means going onto the NHS and I fought so hard to get him private. Have no idea what to do but thankfully the oncologist says if we can&#8217;t decide then she will. We have 48 hours to make a decision. The tumour has the speed of a tuna.</p><div><hr></div><p>I can&#8217;t carry on having a minor heart attack every time he announces a new symptom. The latest is kaleidoscopic vision, with colours and everything, which, again, he finds wryly amusing. But they probably are all serious. I&#8217;m so sick of this.</p><div><hr></div><p>I host a London networking drinks for my Autotrader podcast, Women in the Driving Seat. I have an absolute emotional crash on the way home - I left all the women with their applause and hugs and best wishes and praise behind at the bar and go home on a dark empty train to my partner and his inoperable brain tumour.</p><div><hr></div><p>We have to cancel our mini break in Salzburg because his brain swelling will make the flight too uncomfortable with the pressurised cabin. It makes me unaccountably sad.</p><div><hr></div><p>Our oncologist rings to say two awful things:</p><p>1) we don&#8217;t have time for the trail because we would have to re-mould the radio mask and redo scans and stuff to start the trial, and the tumour is growing too quickly to wait</p><p>2) where the tumour (this time it typed out as &#8220;gym&#8221;, what next?) is positioned means it&#8217;s not good because we can&#8217;t do any more debulking (operating to cut it away). She says if the tumour had been in a different area than we could&#8217;ve had more time on our side.</p><p>He accepts it all; I cry about it all.</p><div><hr></div><p>Back home, in the kitchen, I vacillate between &#8220;Is he ever going to do any washing up again?&#8221; And &#8220;why should he? I should do it all. He should be washing-up-free for the remainder of his life&#8221;. But I&#8217;m shattered.</p><div><hr></div><p>Massive row, starting with the sex question. As in, are we ever going to have it again? It&#8217;s been months because his sex drive has vanished. He accuses me of making it all about myself, of constantly pressuring him about affection, putting demands on him (I&#8217;ve asked three times in two months if he can give me a hug or thank me for caring for him and sorting everything. It&#8217;s hardly constant). So I get furious and yell back, and he loses it. He runs round the bed, pushes me down onto it and pins down my head while he yells in my ear. </p><p>I flee downstairs in tears, grab the car key and leave the house at 11.30pm, going I don&#8217;t know where. I drive slowly through our village, looking for any of my friends&#8217; houses with lights on, and find my old school friend Elly and her husband Will, who sit up with me at their kitchen table while I sob and dribble into tissues. They kindly remove their daughter from her bed to give it to me, give me her melatonin to help me sleep and set up a whatsapp group for me with all my friends on it for support. How lovely. God I love other women.</p><div><hr></div><p>In the middle of reading an insta poem on grief and feeling the heat of tears rise from my chest, my 12-year-old son says &#8220;mum, what has five toes but isn&#8217;t your foot?&#8221;. &#8220;My foot&#8221;.</p><p>In the middle of death, there is always life. X</p><p></p>]]></content:encoded></item><item><title><![CDATA[“The tumour is on the move”]]></title><description><![CDATA[And other charming news]]></description><link>https://erinbaker1001.substack.com/p/the-tumour-is-on-the-move</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/the-tumour-is-on-the-move</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Sat, 18 Jul 2026 07:00:47 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!yXC-!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fa2f9a81d-10dd-4f0a-95ed-04ba084e2ab1_4032x3024.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p></p><div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!yXC-!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fa2f9a81d-10dd-4f0a-95ed-04ba084e2ab1_4032x3024.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!yXC-!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fa2f9a81d-10dd-4f0a-95ed-04ba084e2ab1_4032x3024.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!yXC-!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, 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y2="14"></line></svg></button></div></div></div></a></figure></div><p></p><p>I walk into Marks &amp; Spencer&#8216;s for food, and have to walk through the men&#8217;s clothing section for the first time since the diagnosis. I pass the men&#8217;s shirts on their rails and am so sad that I won&#8217;t have to buy him any more clothes. When I later tell a friend, she says &#8220;Buy them anyway if it cheers you up&#8221;. But I&#8217;m also tight, a fact James constantly teases me about, so the wasted money would be even more painful.</p><p></p><div><hr></div><p></p><p>How does James maintain sense of purpose if he can&#8217;t work? It&#8217;s a question we&#8217;re both wrestling with, and it&#8217;s a problem compounded by not knowing how long he has and how steep or shallow his decline will be. He wonders about volunteering work. But I can see he&#8217;s not going to have the energy for it and he can no longer drive so there&#8217;s the problem of getting him to and from somewhere. He sleeps a lot in the day: on sofas, beds, chairs. Apparently, it&#8217;s the inflammation from the brain surgery and the radiotherapy, but I can&#8217;t see it subsiding</p><p>One afternoon I also notice that no one is looking after me or hugging me. James&#8216;s tumour means he has no empathy or affection. It&#8217;s not a nasty thing, it simply doesn&#8217;t occur to him to wonder how I am dealing with all this. Or rather, he can think about it intellectually but there is no emotion working alongside the thought. It&#8217;s a strange thing to witness or try to explain to other people. I have a minor medical issue that requires a trip to the GP and a hospital scan, and James simply doesn&#8217;t care about it. He loves me, but he doesn&#8217;t offer sympathy because he can&#8217;t. What a strange new universe this is. And one I&#8217;m already fed up with, and weary of sitting in the centre of it. It feels like blinking into a bright light shining in my face, that never dims. A relentless spotlight on a problem I don&#8217;t want.</p><div><hr></div><p>And then we take another step down the staircase of dying. our wonderfully blunt and clever consultant tells us in a very straightforward statement that &#8220;the tumour is on the move since the operation&#8221;. Which was only a month ago. His hearing is whooshing and he sees a dent in vertical lines like walls or windows or doorframes. He finds it all vaguely amusing. I find it all vaguely fucking terrifying.</p><div><hr></div><p>James is so horribly obstinate and selfish sometimes: he won&#8217;t let me film any videos, for me, or the kids. I have begged and pleaded and tried telling him that because I&#8217;m a journalist I can even do it in an amusing way if he prefers, such as filming him asking him which child he prefers. He just has a blunt no to all of it and won&#8217;t explain why. It&#8217;s just a no. So I&#8217;ll have no video of him or recording of his voice after he&#8217;s gone. I don&#8217;t even have the words for how his refusal makes me feel. </p><p>I suppose it can be summed up in &#8220;utterly alone&#8221;.</p><p></p>]]></content:encoded></item><item><title><![CDATA[How long have we got?]]></title><description><![CDATA[Panic, money worries and other lovely realities&#8230;.]]></description><link>https://erinbaker1001.substack.com/p/how-long-have-we-got</link><guid isPermaLink="false">https://erinbaker1001.substack.com/p/how-long-have-we-got</guid><dc:creator><![CDATA[Postcards From Grief]]></dc:creator><pubDate>Fri, 17 Jul 2026 06:34:52 GMT</pubDate><enclosure url="https://substackcdn.com/image/fetch/$s_!pb5M!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7c6afdb2-7d3b-42a9-999c-ecfe89fbd1b5_1200x1600.jpeg" length="0" type="image/jpeg"/><content:encoded><![CDATA[<p></p><div class="captioned-image-container"><figure><a class="image-link image2 is-viewable-img" target="_blank" href="/__u/substackcdn.com/image/fetch/$s_!pb5M!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7c6afdb2-7d3b-42a9-999c-ecfe89fbd1b5_1200x1600.jpeg" data-component-name="Image2ToDOM"><div class="image2-inset"><picture><source type="image/webp" srcset="/__u/substackcdn.com/image/fetch/$s_!pb5M!, /__u/erinbaker1001.substack.com/w_424, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7c6afdb2-7d3b-42a9-999c-ecfe89fbd1b5_1200x1600.jpeg 424w, /__u/substackcdn.com/image/fetch/$s_!pb5M!, /__u/erinbaker1001.substack.com/w_848, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7c6afdb2-7d3b-42a9-999c-ecfe89fbd1b5_1200x1600.jpeg 848w, /__u/substackcdn.com/image/fetch/$s_!pb5M!, /__u/erinbaker1001.substack.com/w_1272, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7c6afdb2-7d3b-42a9-999c-ecfe89fbd1b5_1200x1600.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!pb5M!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_webp, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7c6afdb2-7d3b-42a9-999c-ecfe89fbd1b5_1200x1600.jpeg 1456w" sizes="100vw"><img 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/__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7c6afdb2-7d3b-42a9-999c-ecfe89fbd1b5_1200x1600.jpeg 1272w, /__u/substackcdn.com/image/fetch/$s_!pb5M!, /__u/erinbaker1001.substack.com/w_1456, /__u/erinbaker1001.substack.com/c_limit, /__u/erinbaker1001.substack.com/f_auto, /__u/erinbaker1001.substack.com/q_auto:good, /__u/erinbaker1001.substack.com/fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F7c6afdb2-7d3b-42a9-999c-ecfe89fbd1b5_1200x1600.jpeg 1456w" sizes="100vw" fetchpriority="high"></picture><div class="image-link-expand"><div class="pencraft pc-display-flex pc-gap-8 pc-reset"><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container restack-image"><svg aria-hidden="true" width="20" height="20" viewBox="0 0 20 20" fill="none" stroke-width="1.5" stroke="var(--color-fg-primary)" stroke-linecap="round" stroke-linejoin="round" xmlns="http://www.w3.org/2000/svg"><g><path d="M2.53001 7.81595C3.49179 4.73911 6.43281 2.5 9.91173 2.5C13.1684 2.5 15.9537 4.46214 17.0852 7.23684L17.6179 8.67647M17.6179 8.67647L18.5002 4.26471M17.6179 8.67647L13.6473 6.91176M17.4995 12.1841C16.5378 15.2609 13.5967 17.5 10.1178 17.5C6.86118 17.5 4.07589 15.5379 2.94432 12.7632L2.41165 11.3235M2.41165 11.3235L1.5293 15.7353M2.41165 11.3235L6.38224 13.0882"></path></g></svg></button><button tabindex="0" type="button" class="pencraft pc-reset pencraft icon-container view-image"><svg xmlns="http://www.w3.org/2000/svg" width="20" height="20" viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" stroke-linejoin="round" class="lucide lucide-maximize2 lucide-maximize-2"><polyline points="15 3 21 3 21 9"></polyline><polyline points="9 21 3 21 3 15"></polyline><line x1="21" x2="14" y1="3" y2="10"></line><line x1="3" x2="10" y1="21" y2="14"></line></svg></button></div></div></div></a></figure></div><p></p><p>I wake up with a brutal and shameful but nonetheless very real thought: will James&#8217;s deterioration mean I have to spend all my savings caring for him? We&#8217;re a blended family and have kept our money utterly separate in the 12 years we&#8217;ve been together. My savings are for my kids, and he has none because he&#8217;s had to finance his ex-wife who has always refused to work full time, so it&#8217;s been very costly. If nursing care at home is means tested, and my savings are included, then we won&#8217;t get any financial help and my kids won&#8217;t get any inheritance. FFS.</p><p>I speak to the hospice who tell me that because we aren&#8217;t married, only his finances come into play. I breathe a sigh of relief inwardly. Don&#8217;t know if my thoughts are fair enough or awful.</p><div><hr></div><p>We meet with our amazing oncologist, Dr Lucy Brazil, at Guys. Her straight talking and obvious intelligence mean she&#8217;s the only medical person James has met so far that he trusts and respects. She says the gold-standard treatment for us is radio plus chemo every day for six weeks. </p><p>She tells us that it&#8217;s very rare to have someone James&#8217;s age with this tumour - they&#8217;re normally in their 80s and with other complications so only 50pc can have treatment. It makes us feel worse that he&#8217;s got something so rare. Tomorrow we have a mask fitting for his radiotherapy.</p><div><hr></div><p>Up to London for an MRI at Guys which turns out to be two MRIs so we don&#8217;t get the train back til 6pm and it&#8217;s Friday which means it&#8217;s packed so James has a panic attack all the way back because his tumour means he can&#8217;t cope with noise. He has to spend 45 minutes staring very very hard out of the window into darkness while trying to control his breathing. </p><p>Will the mother of the screaming child on the train not shut him up? </p><p>Will someone give us a bloody break?</p><div><hr></div><p>The next day his headaches have returned - we&#8217;re both worried and I&#8217;m sick of this lurching fear. </p><p>I hear from a friend that James&#8217;s ex-wife has been telling the other rugby mums at her son&#8217;s matches that james has left her with no money since his diagnosis (not true - he&#8217;s carried on paying her but at a reduced rate as he&#8217;s not earning how) and that eventually one of the other mums cut her off to say &#8220;and how is James?&#8221; Which made her pause and admit she didn&#8217;t know. She&#8217;s an unfunny version of Amandaland.</p><div><hr></div><p>We&#8217;re told that we both get counselling via the Kings neuro-oncology dept, and that there&#8217;s a waiting list but if he has under 12 months left, we get fast tracked, otherwise it&#8217;s one to two months. So I guess that we are going to know how long he&#8217;s roughly got, whether we want to or not.</p><p>I have a splitting headache and have to stay in bed all day. I&#8217;m never sick. Maybe I&#8217;ve got a brain tumour too. The thought genuinely feels like a relief - anything to be in the same boat as James and escape this waking nightmare: we could row to the horizon and over the edge together. Even as I contemplate this romantic, heroic, existential end to our lives, the thought occurs that we&#8217;d get there bloody quickly because I rowed at Cambridge and he rowed at Bedford. And we&#8217;d argue about the timing of the stroke all the way. </p><p>God, why can neither of us ever stay in a romantic moment long enough?! For goodness sake, Erin, shit is real now. </p><p></p>]]></content:encoded></item></channel></rss>