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 …