Hi all,
Haven’t had any energy over the weekend to post, but I’ve been reading all your messages as ever and loved seeing all the pictures and reading the genuinely heartfelt sentiment, it gives me a real boost especially in harder moments, and even though you all make me cry bucketloads, I thank you.
I’ve slept a lot during the last couple of days, trying not to drift in to just sleeping and wasting away though. Late mornings I seem to feel particularly spaced out and tend to sit in the sunroom with my feet on a footstool surrounded by pillows and try to just float into a sweaty nothingness. I’m listening to radio plays on YouTube when I have any concentration at all. I’ve tried to listen to the yoga nidra that someone suggested and it did seem to calm me down a bit.
Have got into a bit of a better routine with Kerr regarding pain. He tended to go into quite the panic when my pain was very bad, and flapped about trying to rub my back, sort my meds, generally having a bit of a meltdown himself, making for a more stressful situation (bless him, he’s just helping, I’m not criticising in any way). But, we’re trying the opposite now, he just sits and strokes my arm or leg and speaks quietly, sometimes about nice memories, sometimes just soothing words. It actually seems to help me so much more to come down from a really bad point of pain, so the emotional soothe factor does seem to have an actual physical benefit.
This jaundice is pretty awful now. It makes you feel ill in a way that’s almost impossible to describe apart from to say it feels like your insides are poisoned and every cell feels like it’s struggling to do what it’s meant to. I’m very yellow and continuing to have all the other symptoms, now also very itchy into the mix. I’m extremely concerned that each day I am weaker and weaker and I’m not entirely convinced I can go through a stent operation - but that may be the jaundice talking, I don’t really know. My weight loss is shocking, I’m almost unrecognisable, despite really trying to eat and have supplements, and yet my abdomen is so distended and bloated that I look like a little ball with stick arms and legs. The pressure of the abdomen is constant and there feels like no escape.
I keep going back to feeling extremely let down by the 7 weeks this has now taken to get to the point of diagnosis and not even treatment - I was in hospital 10 days ago when the jaundice began and here I am back home with still no solution, no benefit whatsoever from antibiotics and no stent. I feel extremely bitter and angry about this to be honest (more on that later).
I can’t sleep in my bed anymore, the mattress is just too hard, we have tried a hundred ways to get me comfortable in a sort of nest type situation, but the only thing that seems to be tolerable is sleeping on one of the old sofas we have in the sunroom which is really soft and moulds around me. The ridiculous performance we have to go to with about 7 pillows to get me into a position that I can have half a chance of sleeping in seems to take ages, and then I’m scared to move an inch. I’m actually really fearful of nighttime now as my pain seems worse then. Poor Kerr is sleeping on the other sofa, and for a 6’4” man it’s hardly ideal. He insists though, he’s a total star.
On the pain note, nothing from palliative care yet (quelle surprise), but GP only put referral in on Friday and as we have seen so far, things do not move fast here. I’m having codeine more regularly now and in some ways I do think that’s helped a bit, although last night was a total bust. Was up 4am -6.30am with incredible pain, just didn’t know what to do with myself, it was horrendous. The only thing I can liken it to is what I imagine a gallbladder attack is like, thankfully I’m not 10/10 pain like that constantly, but I’m rarely below a 5. Hopefully get that sorted in the next few days (or not depending on how slow things are).
Very worried about my walking, I just can’t seem to do it for more than a few steps, then I seize up completely. I’m trying to do a bit every day, but I’m also concerned that I simply cannot walk to this appointment tomorrow in Belfast with Mr Vass, and if Kerr manages to get a wheelchair, will that skew the doctor’s opinion of whether I’m strong enough for an operation? Also, the dread of being back in a hospital is so real, and I have entirely lost faith in the NHS here. Honestly, I have, my experience so far as been so terrible. Not the nurses, I really want to make that clear, I’ve only encountered kindness there, but the consultants I saw in Antrim hospital were frankly appalling. They were disinterested, didn’t know my case, didn’t entertain stenting (they can’t do it there anyway - so why was I even there?) and just seemed to throw some antibiotics at me in a vain hope of some success and let me go home in a far weakened state when it was clear I wasn’t working.
It’s so hard to articulate this, and maybe it’s just because I’ve been so low the past couple of days, but there are genuinely times when I just don’t want to suffer like this anymore. I don’t want to die of course, but when the pain is really bad, it seems like a way out if I did. I hate feeling that way. I don’t want to give up. Sometimes I also sit and think that if the stent is going to be difficult, cause only more pain, only buy me a short time, or I die on the operating table or in hospital, or maybe if it works and then I have to exist in this pain and worse for weeks and months, and maybe have treatment that also causes me to feel even more terrible - I just don’t know if I want that for me or for my family. It’s been awful this weekend for them to see me like this, it must be like being trapped in endless horror. It’s probably because I feel so awful that I’m thinking this, but there are times when all I want is peace. I had no idea that pain and illness could be so terrible. I know people say ‘life is suffering’ but man oh man, I had absolutely no clue. I think this has all been fuelled by my bad experience in hospital, and my loss of faith in the doctors here.
Ok, enough of the self pity and on to more productive things that have restored some of my faith in the medical profession. Today we talked to Prof Bridgewater in London. He was nothing short of amazing. He said if I was under his team in UCHL London I could be stented and start chemo within a week, he would also get me on immunotherapy and has put in place motions for my biopsy to be sent for genetic testing. All within a 30 min call. He said the jaundice doesn’t have to clear for chemo to begin with him (different to what I’ve been told here). Miraculous. This would be covered under Bupa. We just need to get to London and stay there. I have a very kind friend in London who has offered to put us up, and we are seriously considering our options. I am not really well enough to fly commercial, so we are also looking into those options for travel within the bounds of reality, we sadly don’t have private jet access! The thought of leaving the house let alone travel to London is a lot. What are the other options though?
Well the other option is that we are to see Prof Vass here tomorrow in Belfast to see what he has to say for himself. If he says something like, no stent possibilities (like they did in the Antrim hospital - awful) or a 2 week delay (which I won’t survive frankly) and then weeks again ahead for chemo and all sorts of MDT delays and nonsense that only kick the can further down the road, and then probably no immuno options here, then I don’t think we have a choice but to go to London. I need to have the chance to live. So, that’s where I’m at. The talk with the Professor in London was eye opening in that it’s really brought home quite starkly the failings of the last 7 weeks and now I’m quite frankly so angry that I’ve been left to get to death’s door when things could all have been much different.
Don’t want to end on an angry note though as I hate holding on to resentments and try not to be a bitter person generally, just want to thank you all for your continued support, love and good wishes, if means the absolute world to me and to my family. I think this appointment today has given me the fuel to really push for better care and options and has put me in a more knowledgable place for this meeting tomorrow, just hope I feel well enough to get through it ok. Will let you all know how I get on.
Ps, we did do some nice things over the weekend - we played rummy last night, and I won a couple of games. Jacob went to an Escape Room with his friends and enjoyed that, and we all watched the Celebrity Chase on Saturday night - it’s so funny that the simplest things are the only things I’m interested in right now. I watched the birds in the garden eating worms after a big downpour, and I’m enjoying seeing my lobelia, begonias and petunias flower in my pots. Still looking for the good in every day and talking about our best part of the day at round the dinner table - I’m really trying hard to sit at the table for dinner every evening, it’s hard going but somehow important.