How can this be possible

 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. 

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. 

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.

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. 

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. 

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. 

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. 

Woman vs food

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.

I'm finding dieting hard (no change there!).  Last time I was on 1000-1100 calories, it came off steadily and, for me, reasonably quickly.  This time it's 1-2lbs a week.  2lbs I can live with, but 1lb is a little disappointing for the level of hunger I'm dealing with.  Still, I'm sticking with it.  One thing I do notice is how much better I feel about myself if I've stuck to the diet - calmer, without that crazy inner dialogue.  Today has been particularly hard and I've snuck some sneaky things I haven't counted (not much, but it is the principle) - that makes me more agitated.  I read somewhere that you have to create a calorie deficit of 500 cals a day to lose half a stone a week.  Well, I'm WAY below that - so at some point, it has to start whirring into action.

I have a good incentive in that we've booked a holiday.  Just a fortnight's cruise around the western part of England and east bit of Ireland (possibly a stop in Wales?  I can't remember).  It's the Orkneys that I particularly want to go to.  I'm not convinced I'm cruise material - I am not one of life's joiner inners and apt to be awkward and shy in larger groups.  But I couldn't find a single hotel with availability in the west country and we will have our own balcony, will go into wherever we berth - I don't see me doing macrame classes.  It's a floating hotel, as far as I'm concerned.  It's also eye-wateringly expensive, but I want P to have holidays - he can't afford to waste time, waiting for holidays to be possible again. Also eye watering is the holiday insurance - we have to have it as a condition of the cruise company.  For just less than a fortnight, it went from £50 for two of us to £450 once you factor in the cancer.  With apologies to anyone who works in insurance, I do think the insurance industry generally are a load of robbers: you pay in but they're never keen on paying out. My mum is always fighting her pet insurance trying not to pay out and my brother had house insurance for years - once he was burgled, they said they'd not pay because they didn't like the windows (which were, I hasten to add, perfectly normal windows - not just holes in the walls!)

P is on new chemo.  The down side of this is that he's on it as "stormtrooper chemo" wasn't working.  Well, it wasn't working on the tumours - his poor mouth was full of ulcers and thrush.  I'm hoping this type won't be so painful.  The idea is to get the tumours down to five or fewer (he has seven significant ones, which are growing) and then he can hopefully have some experimental therapy.  But the positive side is that these are pills - no drugs in through an iv and he did hate the one he had to wear for 60 hours on slow release from home.  He didn't, but you can imagine how tricky everything was.  And it seems (a week in) that he'll get a longer time off the drugs before he has to go back on to the next cycle - he did have a week and he wasn't getting well enough before the next lot started (increasingly so), this is more like two weeks.  Fingers crossed it will be more effective and less brutal.  And that he'll be well enough to go away at the end of August - or I will be fighting the insurance company.

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.

I'm finding dieting hard (no change there!).  Last time I was on 1000-1100 calories, it came off steadily and, for me, reasonably quickly.  This time it's 1-2lbs a week.  2lbs I can live with, but 1lb is a little disappointing for the level of hunger I'm dealing with.  Still, I'm sticking with it.  One thing I do notice is how much better I feel about myself if I've stuck to the diet - calmer, without that crazy inner dialogue.  Today has been particularly hard and I've snuck some sneaky things I haven't counted (not much, but it is the principle) - that makes me more agitated.  I read somewhere that you have to create a calorie deficit of 500 cals a day to lose half a stone a week.  Well, I'm WAY below that - so at some point, it has to start whirring into action.

I have a good incentive in that we've booked a holiday.  Just a fortnight's cruise around the western part of England and east bit of Ireland (possibly a stop in Wales?  I can't remember).  It's the Orkneys that I particularly want to go to.  I'm not convinced I'm cruise material - I am not one of life's joiner inners and apt to be awkward and shy in larger groups.  But I couldn't find a single hotel with availability in the west country and we will have our own balcony, will go into wherever we berth - I don't see me doing macrame classes.  It's a floating hotel, as far as I'm concerned.  It's also eye-wateringly expensive, but I want P to have holidays - he can't afford to waste time, waiting for holidays to be possible again. Also eye watering is the holiday insurance - we have to have it as a condition of the cruise company.  For just less than a fortnight, it went from £50 for two of us to £450 once you factor in the cancer.  With apologies to anyone who works in insurance, I do think the insurance industry generally are a load of robbers: you pay in but they're never keen on paying out. My mum is always fighting her pet insurance trying not to pay out and my brother had house insurance for years - once he was burgled, they said they'd not pay because they didn't like the windows (which were, I hasten to add, perfectly normal windows - not just holes in the walls!)

P is on new chemo.  The down side of this is that he's on it as "stormtrooper chemo" wasn't working.  Well, it wasn't working on the tumours - his poor mouth was full of ulcers and thrush.  I'm hoping this type won't be so painful.  The idea is to get the tumours down to five or fewer (he has seven significant ones, which are growing) and then he can hopefully have some experimental therapy.  But the positive side is that these are pills - no drugs in through an iv and he did hate the one he had to wear for 60 hours on slow release from home.  He didn't, but you can imagine how tricky everything was.  And it seems (a week in) that he'll get a longer time off the drugs before he has to go back on to the next cycle - he did have a week and he wasn't getting well enough before the next lot started (increasingly so), this is more like two weeks.  Fingers crossed it will be more effective and less brutal.  And that he'll be well enough to go away at the end of August - or I will be fighting the insurance company.

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.

I'm finding dieting hard (no change there!).  Last time I was on 1000-1100 calories, it came off steadily and, for me, reasonably quickly.  This time it's 1-2lbs a week.  2lbs I can live with, but 1lb is a little disappointing for the level of hunger I'm dealing with.  Still, I'm sticking with it.  One thing I do notice is how much better I feel about myself if I've stuck to the diet - calmer, without that crazy inner dialogue.  Today has been particularly hard and I've snuck some sneaky things I haven't counted (not much, but it is the principle) - that makes me more agitated.  I read somewhere that you have to create a calorie deficit of 500 cals a day to lose half a stone a week.  Well, I'm WAY below that - so at some point, it has to start whirring into action.

I have a good incentive in that we've booked a holiday.  Just a fortnight's cruise around the western part of England and east bit of Ireland (possibly a stop in Wales?  I can't remember).  It's the Orkneys that I particularly want to go to.  I'm not convinced I'm cruise material - I am not one of life's joiner inners and apt to be awkward and shy in larger groups.  But I couldn't find a single hotel with availability in the west country and we will have our own balcony, will go into wherever we berth - I don't see me doing macrame classes.  It's a floating hotel, as far as I'm concerned.  It's also eye-wateringly expensive, but I want P to have holidays - he can't afford to waste time, waiting for holidays to be possible again. Also eye watering is the holiday insurance - we have to have it as a condition of the cruise company.  For just less than a fortnight, it went from £50 for two of us to £450 once you factor in the cancer.  With apologies to anyone who works in insurance, I do think the insurance industry generally are a load of robbers: you pay in but they're never keen on paying out. My mum is always fighting her pet insurance trying not to pay out and my brother had house insurance for years - once he was burgled, they said they'd not pay because they didn't like the windows (which were, I hasten to add, perfectly normal windows - not just holes in the walls!)

P is on new chemo.  The down side of this is that he's on it as "stormtrooper chemo" wasn't working.  Well, it wasn't working on the tumours - his poor mouth was full of ulcers and thrush.  I'm hoping this type won't be so painful.  The idea is to get the tumours down to five or fewer (he has seven significant ones, which are growing) and then he can hopefully have some experimental therapy.  But the positive side is that these are pills - no drugs in through an iv and he did hate the one he had to wear for 60 hours on slow release from home.  He didn't, but you can imagine how tricky everything was.  And it seems (a week in) that he'll get a longer time off the drugs before he has to go back on to the next cycle - he did have a week and he wasn't getting well enough before the next lot started (increasingly so), this is more like two weeks.  Fingers crossed it will be more effective and less brutal.  And that he'll be well enough to go away at the end of August - or I will be fighting the insurance company.

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.

I'm finding dieting hard (no change there!).  Last time I was on 1000-1100 calories, it came off steadily and, for me, reasonably quickly.  This time it's 1-2lbs a week.  2lbs I can live with, but 1lb is a little disappointing for the level of hunger I'm dealing with.  Still, I'm sticking with it.  One thing I do notice is how much better I feel about myself if I've stuck to the diet - calmer, without that crazy inner dialogue.  Today has been particularly hard and I've snuck some sneaky things I haven't counted (not much, but it is the principle) - that makes me more agitated.  I read somewhere that you have to create a calorie deficit of 500 cals a day to lose half a stone a week.  Well, I'm WAY below that - so at some point, it has to start whirring into action.

I have a good incentive in that we've booked a holiday.  Just a fortnight's cruise around the western part of England and east bit of Ireland (possibly a stop in Wales?  I can't remember).  It's the Orkneys that I particularly want to go to.  I'm not convinced I'm cruise material - I am not one of life's joiner inners and apt to be awkward and shy in larger groups.  But I couldn't find a single hotel with availability in the west country and we will have our own balcony, will go into wherever we berth - I don't see me doing macrame classes.  It's a floating hotel, as far as I'm concerned.  It's also eye-wateringly expensive, but I want P to have holidays - he can't afford to waste time, waiting for holidays to be possible again. Also eye watering is the holiday insurance - we have to have it as a condition of the cruise company.  For just less than a fortnight, it went from £50 for two of us to £450 once you factor in the cancer.  With apologies to anyone who works in insurance, I do think the insurance industry generally are a load of robbers: you pay in but they're never keen on paying out. My mum is always fighting her pet insurance trying not to pay out and my brother had house insurance for years - once he was burgled, they said they'd not pay because they didn't like the windows (which were, I hasten to add, perfectly normal windows - not just holes in the walls!)

P is on new chemo.  The down side of this is that he's on it as "stormtrooper chemo" wasn't working.  Well, it wasn't working on the tumours - his poor mouth was full of ulcers and thrush.  I'm hoping this type won't be so painful.  The idea is to get the tumours down to five or fewer (he has seven significant ones, which are growing) and then he can hopefully have some experimental therapy.  But the positive side is that these are pills - no drugs in through an iv and he did hate the one he had to wear for 60 hours on slow release from home.  He didn't, but you can imagine how tricky everything was.  And it seems (a week in) that he'll get a longer time off the drugs before he has to go back on to the next cycle - he did have a week and he wasn't getting well enough before the next lot started (increasingly so), this is more like two weeks.  Fingers crossed it will be more effective and less brutal.  And that he'll be well enough to go away at the end of August - or I will be fighting the insurance company.

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.

I'm finding dieting hard (no change there!).  Last time I was on 1000-1100 calories, it came off steadily and, for me, reasonably quickly.  This time it's 1-2lbs a week.  2lbs I can live with, but 1lb is a little disappointing for the level of hunger I'm dealing with.  Still, I'm sticking with it.  One thing I do notice is how much better I feel about myself if I've stuck to the diet - calmer, without that crazy inner dialogue.  Today has been particularly hard and I've snuck some sneaky things I haven't counted (not much, but it is the principle) - that makes me more agitated.  I read somewhere that you have to create a calorie deficit of 500 cals a day to lose half a stone a week.  Well, I'm WAY below that - so at some point, it has to start whirring into action.

I have a good incentive in that we've booked a holiday.  Just a fortnight's cruise around the western part of England and east bit of Ireland (possibly a stop in Wales?  I can't remember).  It's the Orkneys that I particularly want to go to.  I'm not convinced I'm cruise material - I am not one of life's joiner inners and apt to be awkward and shy in larger groups.  But I couldn't find a single hotel with availability in the west country and we will have our own balcony, will go into wherever we berth - I don't see me doing macrame classes.  It's a floating hotel, as far as I'm concerned.  It's also eye-wateringly expensive, but I want P to have holidays - he can't afford to waste time, waiting for holidays to be possible again. Also eye watering is the holiday insurance - we have to have it as a condition of the cruise company.  For just less than a fortnight, it went from £50 for two of us to £450 once you factor in the cancer.  With apologies to anyone who works in insurance, I do think the insurance industry generally are a load of robbers: you pay in but they're never keen on paying out. My mum is always fighting her pet insurance trying not to pay out and my brother had house insurance for years - once he was burgled, they said they'd not pay because they didn't like the windows (which were, I hasten to add, perfectly normal windows - not just holes in the walls!)

P is on new chemo.  The down side of this is that he's on it as "stormtrooper chemo" wasn't working.  Well, it wasn't working on the tumours - his poor mouth was full of ulcers and thrush.  I'm hoping this type won't be so painful.  The idea is to get the tumours down to five or fewer (he has seven significant ones, which are growing) and then he can hopefully have some experimental therapy.  But the positive side is that these are pills - no drugs in through an iv and he did hate the one he had to wear for 60 hours on slow release from home.  He didn't, but you can imagine how tricky everything was.  And it seems (a week in) that he'll get a longer time off the drugs before he has to go back on to the next cycle - he did have a week and he wasn't getting well enough before the next lot started (increasingly so), this is more like two weeks.  Fingers crossed it will be more effective and less brutal.  And that he'll be well enough to go away at the end of August - or I will be fighting the insurance company.

Seren: for some reason I can't comment on your blog.  I'll keep trying.

Seren: for some reason I can't comment on your blog.  I'll keep trying.

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.

I'm finding dieting hard (no change there!).  Last time I was on 1000-1100 calories, it came off steadily and, for me, reasonably quickly.  This time it's 1-2lbs a week.  2lbs I can live with, but 1lb is a little disappointing for the level of hunger I'm dealing with.  Still, I'm sticking with it.  One thing I do notice is how much better I feel about myself if I've stuck to the diet - calmer, without that crazy inner dialogue.  Today has been particularly hard and I've snuck some sneaky things I haven't counted (not much, but it is the principle) - that makes me more agitated.  I read somewhere that you have to create a calorie deficit of 500 cals a day to lose half a stone a week.  Well, I'm WAY below that - so at some point, it has to start whirring into action.

I have a good incentive in that we've booked a holiday.  Just a fortnight's cruise around the western part of England and east bit of Ireland (possibly a stop in Wales?  I can't remember).  It's the Orkneys that I particularly want to go to.  I'm not convinced I'm cruise material - I am not one of life's joiner inners and apt to be awkward and shy in larger groups.  But I couldn't find a single hotel with availability in the west country and we will have our own balcony, will go into wherever we berth - I don't see me doing macrame classes.  It's a floating hotel, as far as I'm concerned.  It's also eye-wateringly expensive, but I want P to have holidays - he can't afford to waste time, waiting for holidays to be possible again. Also eye watering is the holiday insurance - we have to have it as a condition of the cruise company.  For just less than a fortnight, it went from £50 for two of us to £450 once you factor in the cancer.  With apologies to anyone who works in insurance, I do think the insurance industry generally are a load of robbers: you pay in but they're never keen on paying out. My mum is always fighting her pet insurance trying not to pay out and my brother had house insurance for years - once he was burgled, they said they'd not pay because they didn't like the windows (which were, I hasten to add, perfectly normal windows - not just holes in the walls!)

P is on new chemo.  The down side of this is that he's on it as "stormtrooper chemo" wasn't working.  Well, it wasn't working on the tumours - his poor mouth was full of ulcers and thrush.  I'm hoping this type won't be so painful.  The idea is to get the tumours down to five or fewer (he has seven significant ones, which are growing) and then he can hopefully have some experimental therapy.  But the positive side is that these are pills - no drugs in through an iv and he did hate the one he had to wear for 60 hours on slow release from home.  He didn't, but you can imagine how tricky everything was.  And it seems (a week in) that he'll get a longer time off the drugs before he has to go back on to the next cycle - he did have a week and he wasn't getting well enough before the next lot started (increasingly so), this is more like two weeks.  Fingers crossed it will be more effective and less brutal.  And that he'll be well enough to go away at the end of August - or I will be fighting the insurance company.

Seren: for some reason I can't comment on your blog.  I'll keep trying.

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.

Here’s where the story ends

I’ve not been here for so long that I am pretty sure no-one checks in – quite naturally.  But I feel like I need a last post (probably) to conclude the story, as it were.  I don’t know about you, but I love a HEA (happily ever after) – in books and in real life.  Although real life is obviously more problematic.

And there is no HEA for me.  Last November, the hospital was a little uneasy at P’s scan but if there was something there, it was too small to see.  Rescan.  Valentine’s Day we were back – there were tumours which have grown back and increased in all sections of his liver.  More aggressive chemo to try and reduce and shrink the tumours to the level that would make an operation possible.  Not only did they have to go, they had to stay gone, unlike what happened after the chemo stopped last summer. 

We thought the chemo would be less severe this time: last time he was weak from the operation and being in hospital for such a long time.  It was worse.  He had very unpleasant side effects, the worst was a mouthful of such painful ulcers that eating was a misery.  Not to mention that it killed his taste buds.  His hair mostly came out (which he says he doesn’t care about, but my heart aches for him).  He’s aged 10 years in the last couple of years.  My stepson sent me a photo of them a couple of years’ ago that was actually painful to look at, the difference is so marked.

Two weeks ago, we were told the chemo had not worked, other than that the tumours appeared no worse.  It is now terminal.  If he carried on with chemo he has an average life expectancy of 14-15 months, otherwise it was 3-4 months.  He will go back on to the chemo, albeit tweaked a little to try and lessen the side effects.  He is determined that he will beat the average – and a lot of well-meaning friends have come to tell them that they’ve ‘heard of someone’ who lived 10 years.  I thought that his comparative youth would be a factor in his favour, but his oncologist said no, it’s down to the tumours.  He has six.

My life changed absolutely on that day.  Whilst I will try to ensure we have as many happy times as possible for as long as he’s well enough, I know I will never be happy again, that my last happy day was already behind me, and I hadn’t even realised at the time.  It’s not the future we planned (obviously) – and I’ve lost that too.  My whole life is ending – and yet, I’ll be here to feel that depth of pain.  I am a coward – I can’t face it and I don’t know how I’m going to get through this.  People are kind and they ask what they can do, but the truth is there’s nothing.  The future is terrifying and bleak. And that’s the ending of my story.

Update

A lot has happened.

P’s last round of chemo was in early August.  He then had to have scans to establish one of two outcomes: the first was the most positive – that the “Stormtrooper” chemo had shrunk the cancers in his liver sufficiently that they could operate and still leave enough liver left to function.  And the other was palliative chemo – essentially, keeping him alive for as long as he had the quality of life to bear it.  Even before chemo had ended, P was saying he really didn’t want any more – he was unfailingly stoic about the side effects but it was relentless.  It was only me bursting into tears and begging him to do anything that would keep him alive and making him promise, that made him back down. 

We saw the oncologist just before his final round of chemo who said we should hear the end of that week or beginning of the next week but that he hoped he wouldn’t see us again – that he hoped the next appointment would be with the surgeons as it would mean that P could have the op.  And we waited.  The end of that week went, the next week went – and then we got an appointment with oncology for a fortnight’s time.  I tried to think of any way this could be interpreted positively and came up with nothing.  My birthday was in the middle of all this – it was not a good birthday anyway, but I had no interest in celebrating anything with the prospect of terminal cancer hanging over us.  I couldn’t help but wonder where we’d be next year – whether I would be ‘celebrating’ alone.  I got to the point where I practically begged P to speak to the specialist nurses.  No, not “practically”, I did.  They kept saying they’d call back and then they didn’t. 

Three days after my birthday, I got a text message from P.  I’d been in a meeting and he hadn’t been able to get me.  I found it incredible hard to read and had to call him.  But what I thought it said, it did say – that, despite best predictions, the Stormtrooper chemo had not only reduced the cancer lesions, it had destroyed them.  There was no sign of any cancer left in him.  My legs went to jelly, I thought I was going to pass out, that I was going to cry, that I was hearing things.  The euphoria of relief was overwhelming.  It felt like winning the lottery – except this was so much better than winning the lottery.  No sum of money could be better than the prospect of having a future with P back. 

I have been touched by others’ reactions too: several of our friends cried with relief.  Others desperately want to celebrate with us – we’ll be celebrating until Christmas!  People we barely knew were jubilant – my new colleagues, two of whom flung their arms around me (not simultaneously), my hairdresser (who also cuts P’s hair (although he’s lost a lot during chemo))

The next week P was due at the GP as his current sick notice was due to expire.  She offered to extend it, but, with his usual phlegmatic level headedness, he’s actually back at work.  Only working a half day, in the middle of the day, so that he doesn’t have to travel in the rush hour (with all the germy people).  His immune system will be depressed for another 6 months.  And he gets very tired.  But he’s hurtled back to normality.  And we go on holiday at the beginning of next week for 10 days to Marrakech, so he can have some rest and some sunshine (although hopefully not a dodgy stomach as he’s had quite enough of that).  And then we’ll see.  I know I will be terrified again in November when he has more scans and then an appointment to check it’s not come back/popped up elsewhere.  But I’m determined to deal with that terror then and enjoy the blessed relief of now.  Now we can properly celebrate his birthday on Friday ahead of our holiday.

And then, after Marrakech, I need to get properly back on the wagon.  Over the last month and a half, I’ve put on a stone and a half – which is mind-blowingly appalling.  And that’s with me getting so terrified I couldn’t get food down me sometimes.

Helpless

Well, after your praise and admiration that I’d lost nearly 4.5 st, I have lost the plot entirely and put a stone of that back on.  It seems that anxiety is a HUGE trigger for me (no pun intended, although…).  When I was lost in the exhausting treadmill of work/hospital/(briefly)home (rinse, repeat), I don’t recall being massively hungry – I really only ate marmite on toast for dinner for almost every day that month and maybe a snack at the hospital by P’s bed. 

Now, though, the eating is out of control.  I’m constantly hungry, constantly greedy and always thinking about what I can eat next.  I’m also intensely anxious – and that is still increasing.  Next week we ‘hope’ (if hope is the right word) to hear whether the ‘stormtrooper chemo’ has worked, has worked enough to shrink the tumours and that the tumours have shrunk enough that if removed, there would be enough liver left to perform its function.  Every day I feel more anxious about this – it actually feels like someone is turning some kind of key, tightening my anxiety. I am simultaneously desperate to know and terrified of knowing.  I have (probably) a week to wait – maybe more.  They seem to think if they don’t make the purpose of the appointments explicit, you a) won’t realise and therefore won’t be worrying and b) you can’t hold them to anything.  I can always worry.  I was good at worrying before – now I am truly world class at worrying.  But he has a scan tomorrow, ahead of the final dose of chemo next week and another scan on that day.  

If the tumours have shrunk, I imagine they’ll want him in to operate on pretty sharpish, in case they start growing again. 

I feel sick (and not just because of the amount of rubbish I’m eating) and constantly on the edge of tears.  At night I lie awake, not even really able to think clearly, just with a whirlwind of impressions going through my head. 

P is impressively sanguine.  He has determined that it will all go well and seems to be able to just exclude any other possibility from his mind.  I don’t want to confess how much weaker and more scared I am as I don’t want to give him the burden of dealing with me, as well as whatever he may face next week.  I’m not sure how long I’ll be able to keep it up, mind.

And really, the eating lots of rubbish thing is not helping with the feeling that I’m careering, out of control, in some terrifying analogous car.  And yet, I’m finding it very difficult to stop.

People are strange

They really are.

I have to say that mostly, people have been very kind.  Admittedly (and naturally) these people tend to be friends or colleagues.  I have been moved to tears several times by the kindness of people who go out of their way to show and/or tell us that they love us.

Then there are people who are not kind – usually through clumsiness, rather than malice, I know.  I was furious and extremely distressed when my band nurse told me that I had to get rid of stress from my life or my band would react.  I said it wasn’t really possible to rid my life of stress at the moment or for the foreseeable future – and they do know about P.  She then started going on about mindfulness exercises and playing music.  Excuse me, but a piece of music that would make me feel better about the very real prospect of losing the person I love most in the world?  That piece of music doesn’t exist.  And what an unbelievably crass and stupid thing to say.  I was crying but I’m still not sure if it was anger or misery – a bit of both, I guess.

But then there are others.  I have a friend who I thought was a good friend.  She’s not in touch a lot – but last time she messaged me to see how I was, I did actually say that I was struggling, that I was finding it very tough.  I actually find it quite hard to admit just how unhappy I am and just how poorly I am coping.  I haven’t heard from her since.  It’s hurtful.  I know that not everyone can find it easy to deal with this situation, it must be hard to know what to say.  In fact, I know there IS nothing that anyone can say or that anyone can do, but it’s very lonely and even a ‘thinking of you’ message helps.

Another drab update

Thank you for bearing with me. Life is upside down and I post infrequently, off-topic and in a most un-engaging way.  Let’s get the health stuff out of the way and then I’ll do a half-hearted post on weight loss.

P is about to start on his 2^nd round of chemo.  He’s had side effects but nothing too bad or too dramatic.  We understand that these side effects can be cumulative – but hopefully he won’t have too rough a time of it.  He is positive and cheerful.  I find it difficult to follow this admirable example.  The odds sound scarily slim to me: the chemo has to work, it has to work sufficiently that it shrinks the lesions so the surgical team can remove them from his liver – and then there has to be sufficient liver left if they are to do this, to ensure it can still do its job.  There seem like an awful lot of dependencies here.  We won’t know whether it’s worked and whether they can operate until sometime in August.  It feels relentless.  I’m beginning to find it sapping, emotionally.  This has been going on since mid-February.  I just want it to be over.  But of course, I only want it be over if it’s the right over.  If we can get back to our lives.  If we have another 20+ years together to look forward to.  If we look back on this as a terrible time, but one in the past.

The uncertainty.  It’s my birthday at the end of August.  I’ve booked us somewhere nice for dinner.  But hopefully, he’ll be in hospital.  What a horrible thing it is to hope for this.  We’re due to go to Marrakech in late September.  It’s impossible to look this far ahead.  The flights are booked and paid for, the hotel is paid for.  We just don’t know if this is money wasted or whether we’ll get our, frankly, much-needed break.

Weight loss: well, it’s been a year since surgery.  A bit longer since I’ve been getting my head down and dieting.  I’ve lost almost 4.5st.  I’m almost at my post LL weight – albeit that it’s taken over a year to get (back) here, rather than 100 days.  I know it still sounds like a lot – and it is a lot and I am pleased (as much as I’m pleased about anything now) - but it has been slow and frustrating.  My pattern seems to be for the scales not to shift for ages, then to drop quite a bit and then to bounce back up, before inching back downwards.  This is illogical.  I still don’t have the result from the band that I should have – I am still very hungry.  Much over 1000 cals a day and I start putting it back on.  I had to have a de-fill recently because I couldn’t swallow anything – but in another month or so, I’ll try another fill.  It should mean I’m satisfied with small portions and not hungry again for c4 hours.  I think I eat less, but I last c2.5 hours before I’m hungry again.  I spend a lot of time hungry.  It does add to the general feeling of finding life quite hard at the moment.  But equally, I know that if I started steadily putting weight on, I’d feel a lot worse.  Apparently the band can tighten as a result of stress – this is why they think I needed a de-fill.  So I may need another one yet, rather than putting it back in again!

As my friend said to me, all I can do is ‘keep buggering on’.  I’m trying.

Firstly THANK YOU SO MUCH for all your kindness, it means more than I can say.

I’ve not heard the details because I was at work, but of the scenarios Bad, Worse and Terrible, it’s Worse. Which is to say it could be worse, as it does offer him a shot. It’s aggressive chemo to shrink the cancers and they hope they will then be able to operate and remove them. We get more details on Monday.

We battle on.

Update

So, he came home after a 31 day stay in hospital. Quite a lot longer than the 4-7 days we were expecting. The first few days were really tough - he was still very ill but without the reassurance of medical support. I had to learn to do a few things - and I could never have been a nurse, I am so squeamish. I had to keep a very firm mental grip not to faint.

Then, he began to improve and improve. The last couple of weeks, you wouldn’t have thought he was ill. We saw the oncologist who said that they were confident they had removed all the tumours, they couldn’t guarantee it was or wasn’t elsewhere because it was in his lymph nodes. We agreed that he would take up the offer of chemotherapy, just to be sure. Six cycles - to end in November. Over by Christmas, thought.

Then. They had found some “markers” so wanted to do (yet another) scan. After that, we were given a n appointment to discuss the results. This made me nervous. But I have a tendency to catastrophise so I tried to keep a grip. Then we got a letter for yet another scan.

Sometime even a catastrophist underestimates. He has 11 cancerous tumours in his liver. Aggressive and have appeared in the last c6 weeks. Best case scenario (and ‘best ‘ is absolutely not an appropriate word) is that they can operate and remove the lesions, then follow it up with chemo to try and prevent any return. Next least bad option is that if they zap him with aggressive chemotherapy, they can shrink the lesions so they can be operated on (then more preventative chemo). The truly terrifying ‘option’ is that they see that they cannot remove the lesions - either before or after chemotherapy. Then it’s about a “comfortable way to live out his life”.  Palliative, in other words.

The scan is on Tuesday and the oncologist will call us on Wednesday with which of these plans will be the one.

I am so terrified I can hardly breathe at times. It feels so unbearable that my mind races with an attempt to escape. But there is no escape.

Think of us, please.

Update

The update is that there’s not a lot to update.

P is still in hospital – day 29 – and his latest release date (of very many) is Easter Sunday.  Given that he was told 4-7 days when he first went in for the op, I’m not holding my breath.  Or rather, I am just to prevent myself falling apart. We’d been told for the last week that it would be today.  To be told yesterday that it won’t is very upsetting.  Probably disproportionately.  I am so tired and I have kept telling myself that I only have to get to Easter and we could relax together.  Trying not to think of the holiday we had to cancel.  So that hasn’t worked out and I feel like I can’t keep on like this.  I’m eating rubbish – I’ve even started having a glass of wine at night and I have never done that, I’m getting far too little sleep and I’m constantly so tightly wound that my back and ribs ache from being so tense. 

I start a new job at the beginning of May and it seems inconceivable that I will manage the level of energy and enthusiasm required for that.  They’re very good though and have said I can have the time to go to his chemo appointments with him and travel home with him afterwards.  He won’t start chemo until he’s discharged – at least he gets to do that as an outpatient.

I’m going through a particular bout of self-loathing too, triggered by a photo I had to send for my new job and probably from the undisciplined eating and the scale going up. 

Sorry, I can’t manage anything more upbeat at the moment.  I do know that things could be worse …

Still here

I have no levity to offer. My heart feels heavy.  It could be worse: the scenario in which P might have stage 4 cancer has, I believe, been discounted. And I am thrilled about that. Of course I am. But it’s buried under a whole lot of anxiety and stress and unhappiness. They said it would be a hospital stay of 4-7 days. Of course he thought that meant 4. I tried not to get my hopes up and tried to assume 7. It’s been nearly a fortnight and he won’t be home this week. It’s one thing after another. He had to have a deep line put in to the major vein (? I have zero science brain. Nor many others) to get some nutrients into him. It’s a dicey business, making sure there’s no risk of infection being plunged in right there. Now they’ve decided that the op let some fluid into his lungs - he’s been really breathless, with white lips, which has scared me. So another deep line inserted under X-ray to drain that. At the end of last week they were casually talking about a further op - I think this is currently off the table.

I hadn’t realised how much I was holding on to a trip booked for the end of this month to Devon and w. It was a (significant) birthday present from me to him. It’s all booked, we were looking forward to it. And I suppose I was hoping it would be the point where we looked back at all this... this shit, and put it firmly in the past. I have to cancel it. It’s not (just) the losing money, it’s what it symbolised. I won’t get the flight money back. And one of the two hotels give only 25% back. I’m not sure about Fifteen. Or the vineyard tour. I wondered whether we could rebook for the end of June. P thinks June is too soon and said November. To be fair, we have a holiday booked for September/October. November is no good. It would have to be next year. I don’t think the hotel will go for that.

My life is work until lunchtime, get to the hospital for visiting time, leave at the end of it. I get home 9.15 - 9.30pm mostly. And then it’s shower, eat, get stuff ready for the next day. It’s always a late night - but I don’t sleep well anyway.

So, at the moment everything feels very bleak. It could be a hell of a lot worse. But it’s still pretty miserable. It will pass, I know.

Waiting

I’m sitting on yet another hard, plastic, hospital chair. Thus time waiting whilst P has an operation to remove c70cm of intestine, including a 2.5cm tumour. It’s been suggested to me (with emphasis) that I might like to go home. Or go shopping. Or go to a coffee shop (this is Whitechapel but I guess Starbucks has even got here (not that I’ve seen one)). The consultant had said I could sit outside theatre whilst he had his op - but the place the nurse (reluctantly) indicated is some way away. So I won’t know when he comes out. They will call me, but not necessarily as soon as they finish. I cannot imagine whiling the time away, shopping- even if there was anywhere nearby to shop. I am keeping a firm grip on my nerves, my hopes and my expectations.

Then - assuming it all goes well (and I AM assuming that) - he’ll be in hospital for up to a week. It could be another fortnight before we find out whether he’ll need “further treatment” (chemo). The waiting is interminable - every time I think we’re getting to a point where we’ll have enough information to make (or break) plans, they whip the goalposts away, re-siting them on the far horizon.

Some days it feels unreal. Some days it feels like it was ‘just’ a bad dream. And some days it feels like we’re stuck inside the bad dream.

The C word

Thank you all for your words of support.

We’ve been very carefully prepared for a diagnosis of cancer – they’ve mentioned it’s “sinister”, that’s it’s a “growth of cells”, that an oncologist will be present.  And we have that diagnosis tomorrow, alongside the treatment plan.  At least we’ll know what we have to deal with.  His GP has said, today, that it “may include an operation” – and my research has said it’s likely to be an operation and radiotherapy. 

That’s for the cancer – he has more tests to come on his heart but nothing until the end of this month and then halfway through April.  So it can’t be that bad then (crosses fingers).  

I just hope that the cancer isn’t an aggressive form and they found it early and they can treat it.

The important thing is that he’s home.  I know the op will mean a hospital stay and I guess I’ll deal with that when we get there – I’ll be so desperate to get rid of the cancer that I’ll focus on that.  Suddenly life feels very fragile.  He’s tough and optimistic and I am (almost) sure he’ll get through this – but I had thought being separated (by death) would be a long, long way into the future and now I’m having to think about how that would be.  I am not sure I’d survive it.  I’m not sure I’d want to.

The eating is going a bit haywire.  I’ve gone from not eating anything to wanting to eat chocolate all the time.  I’ve had a 4 day break from the diet and have put on 3lbs so I need to focus: it’s not going to make me feel any better if my weight suddenly soars.  It’s difficult to reconcile the discipline of dieting with a ‘carpe diem’ feeling.  On Saturday we had fizz and wine and vin santo.  Normally I’d have two glasses of wine or one glass and a G&T.  I wouldn’t ordinarily have pudding – but I made biscotti (which I’m totally doing again – very satisfying).  I ate a LOAD of crisps.  But I can’t eat my way out of this – it’s just that the feelings of panic are very intertwined with urges to eat