Monday, 8 July 2019

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.

Wednesday, 19 June 2019

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 2nd 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.

Wednesday, 29 May 2019

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.

Wednesday, 22 May 2019

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.

Wednesday, 17 April 2019

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 …

Monday, 1 April 2019

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.

Wednesday, 20 March 2019

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.