It’s our 9th wedding anniversary and I am in our bed, holding the blanket P liked to take to hospital and he is in a fridge at the funeral directors. It’s unbearable.
Tuesday, 9 November 2021
Wednesday, 3 November 2021
The End
P died in a hospice yesterday. I am devastated and inconsolable. I miss him horribly already. He was so ill towards the end - really since mid August. He was painfully thin except for a hugely swollen abdomen where the liver was enlarged with all the tumours. I had to lift him and he was so grateful at me caring for him, but I know it must have been hard for him to allow himself to be helped in that way. The toxins were affecting his brain so he became muddled and confused. And he was exhausted - he stopped having an interest in anything and he said of himself how unlike him that was.
He spent the last 2 days in the hospice - with me there throughout. We were advised to go in and he agreed. They were able to dispense stronger drugs and directly - he was having problems swallowing. He’d mostly stopped talking anyway in the last couple of weeks - too tired and his mouth and throat were too dry. But he stopped responding to what was said to him on Monday afternoon/evening. Monday night I sat next to him and stroked his hair and face and talked to him until 3.30am. I called staff to give him more morphine as I think he felt some pain, because he was occasionally moaning a bit.
He moved so his head was right by where I was so I hope that means he heard me and knew I was there. I slept right next to him and held his arm. Then from 7am was chatting to him again and stroking his head. Had he been conscious he would have definitely batted me away! He died at midday. I stayed with him until 4.30pm but it was very hard leaving him and I wish I’d stayed longer. Right now, I wish he was back, even ill, but I know that’s selfish - he had said a couple of times that he wanted to go now. I loved him so much and we were together 26 years - I was with him longer than I’d lived without him. The thought of as many or more years ahead without him seems very bleak.
Wednesday, 27 October 2021
Nearing the end
Today I dragged furniture around the living room, piling it up to make room for a hospital bed I have no idea of the dimensions of. Being careful not to disturb the newly delivered oxygen unit. This was at least more practical and achieved more than last night, which I spent crying.
Thank you for your comments throughout this - Arctic Cloudberry on the last post in particular, reduced me to tears: how lovely that someone I have never met, feels for me so fiercely.
The GP says P “won’t see the end of November”, the palliative care nurse things it will be sooner than that. I can see him deteriorate every day - it used to be weeks and before that, months, but now it hurtles downhill at a terrifying pace.
His liver is so swollen by tumours that it encroaches on his stomach - it’s been a few weeks since he last ate anything much and several days since he ate anything at all. His torso is swollen by the tumours, but the rest of him is skeletal - painfully thin and bony (literally painful as it’s uncomfortable for him to lie down). He always looked young for his age but he’s hurtled through the decades and looks like a man in his 80s.
Even sadder is that the cancer, in stopping his liver from functioning, has led to toxins which affect his brain: he is confused, gets the wrong word, slurs and hallucinates.
But mainly he just sleeps.
Sunday, 29 August 2021
Sailing by
Today should have been the first day of our ridiculously extravagant holiday. It was only a cruise round the UK but we really did push the boat out (no pun intended). On Monday, when it became clear that P’s health was declining quite rapidly, rather than being a downward blip, I had to cancel it.
Of course, the cruise (Fred Olsen) was entirely unsympathetic and charged us the full cost, right down to trips we had had to book only the week before to get ashore. We could have gone anyway and risked P needing medical attention, being taken to hospital or even air lifted out, but it seemed very selfish and unfair on other passengers and the crew. Not something that was taken into account when deciding not to reimburse us any money, not any compassion shown for a pretty difficult situation . So to anyone else, I’d say cause as much disruption as you like - or don’t book with Fred Olsen at all. I certainly won’t.
It would have been lovely to get away but P has suddenly and shockingly deteriorated. He has been very positive and optimistic throughout the last two years, but he says he feels like he’s dying now. He is not so angry but he is grief stricken and worried about me. Any strong emotion brings the onset of tears - and if one of us goes, the other one does too. And he has become quite thin and frail. I’ve had to work from home as he has needed me. For little things but also getting past the receptionists to get the GP to call and issue prescriptions. It was my birthday on Friday and quite apart from spending that week cancelling a whole range of nice plans, it was a really rotten day: somehow it being a day that should have been happy, made it all that much harder.
Saturday, 21 August 2021
Heartache
I thought heartache/break was an emotional concept, but it turns out it’s physical. I have two distinct types - don’t know if this is typical - the most common feels like something heavy and stinging is being poured into my heart. It spreads horizontally and up to my chin. The other is like a pulse of electricity which again starts in my heart and zips down to my toes and up to my head. Both physically hurt.
This is even harder than I thought. I feel so brittle that a nudge and I’d shatter. But that’s fanciful - all we can do is keep going. P is still here. He has good days or good parts of days. He was hospitalised with jaundice and had a stent put in, but is at home. We’re supposed to be going on holiday next weekend but the one thing I’ve learnt is that you can’t plan. Not even a day ahead - certainly not a week.
And this is incredibly selfish but one of the things I find most difficult is that when he’s in pain or scared, he gets pretty mean and is quite unpleasant (and personal) to me. I need to just absorb it and let it go, but I find it so hard, I am just wretchedly miserable. And I am scared that this is how I’ll remember him. That wouldn’t be fair and I think would be very painful.
Thursday, 8 July 2021
Less
The cancer has now spread to a third organ - P’s lungs. The average life expectancy was 3/4 months - a month ago.
So far he feels well, thank goodness, despite the obvious fact that he’s not.
He’s told people - and of course they want to see him. He’s started referring to it (tongue in cheek) as his farewell tour. He’s better with people being cheerful and/or ignoring it.
I do not know how I am going to bear this.
Monday, 7 June 2021
More
I ought to post more frequently. But I ought to do a lot of things. I am still dieting - counting calories of 1000-1100 a day. If I stick to it, I lose about 1/2 lb a week. It feels like a drudge, but I know what the alternative is, so I mostly stick to it.
We found out today that P’s chemo has not worked. The tumours in the liver have grown and it’s now spread to his lungs. He continues to be as positive as ever. I feel like I’m suffocating with fear and misery. We’ve been summoned by the oncologist to actually both go into the hospital tomorrow.
And against all this, I’ve been temporarily promoted to the head of a very under-staffed team. I’m doing 3 jobs - probably more. I feel so taut that one day I think I’ll just snap.
Monday, 22 March 2021
Woman vs food
Seren: for some reason I can't comment on your blog. I'll keep trying. Well, there's a whole lot of nothing going on with me. Pretty true for most of us during the lockdown, I guess. And, as an aside, I'm very grateful to have a reasonably secure job - I've been very busy (and maybe a little envious of people with too much time on their hands) and although working from home has its challenges, I've got used to it - and I emphatically do NOT miss commuting.
Friday, 5 March 2021
Still here
I’m back. And why? Well, two reasons: firstly, because I really want to lose some weight (more of this later) and secondly because sometimes when I feel I can’t bear it, I wish there was some kind of anonymous way to offload – well, some of you know me, but it’s still pretty anonymous. And I figure that this is likely screaming into the wind (metaphorically) as there has only been (metaphorical) tumbleweed for almost a year.
A quick update on the screaming front. I’ve got to say that some days I think it’s awful – and then I remember it’s only going to get worse. I’m not sure whether that’s depressing or comforting – maybe a bit of both. P is still having chemo every fortnight – he’s cheerful and phlegmatic mostly, but I know when he gets tetchy that he’s in pain. He’s lucky that he’s never been sick after it – which I gather is very common – but his mouth fills with lines of ulcers that make eating extremely painful, and even talking hurts. When he’s like this, he can only manage mush and that’s with grim determination. Apparently cleaning his teeth is the most painful thing. The last couple of cycles of chemo, he’s not recovered and it’s time for the next one. He has had to delay going a couple of times – 3 weeks seems to give him a few days of feeling much better. But he’s just had a scan (always an anxious time for me to wait for the result) – then we were told the oncologist was ringing. It was out of the usual schedule – even P thought it was likely to be bad news. I felt sick with anxiety. Then she didn’t call. So who knows what’s going on. Another telephone appointment has been made for Tuesday so we may know more then (assuming it happens).
And on the weight front. Well, it’s been going on steadily. A stone since last summer and it had been creeping up before that. Although still (so far – touch wood) a stone away from my heaviest. I knew from the last time I did this, that as long as I ate 1000 – 1100 calories a day, it comes off reasonably steadily. I have to say, that I am hungry a lot of the time doing this, but it does seem to work. Even if I get on the scales and don’t see much or any shift, I can have faith that it will. That sort of peace of mind makes facing the scales less fraught. But. I’ve been back on this regime for 10 days and have lost – nothing. A tiny bit down (1/4 lb) and tiny bit up – but overall the same. I’m going to keep going as I simply cannot see that this can’t work. But I am starting to feel a bit of panic creeping in.
I also need to factor in being able to do some nice things with P. Like everyone, we’ve barely been out for a year and when you don’t know how much time you have, it feels like such a waste. Obviously he can’t always eat and then I cut right back – and during the week I’m very strict in any case, but weekends when he feels well enough to be able to enjoy food (his taste buds also go during much of the cycle) I want to be able to share a nice meal. And in a couple of months, I want to be able to go out for dinner. Still, we’ll see where we are then – planning too far ahead is a luxury we don’t have any more. I wanted to book the Newt in Somerset, for example, but you have to pay up and if you cancel – either through personal circumstances or coronavirus, you don’t get your money back, they just say you can rebook. The first time they have two nights free is in October – P was given an average life span that only takes us to the summer. I hope we’ve got longer – obviously – and he seems more well than I thought he might be by this stage, but there’s no way I can gamble money on a reservation in October.