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.