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.