tiltingheads

Cancer and other stuff

Archive for the month “July, 2011”

Calm

After the utter chaos and bewilderment that has been the last 10 days, I’m now writing this from my garden catching the late sunshine, glass of beer in hand, having just had an early tea with the BW. Aaaaaand relax. So quick recap: they let me home on Monday and I’ve had to go back every day for blood tests. My neuts have been steadily falling to the point that yesterday, they were 0.03 (at the weekend, in “prison”, I was 0.7). Today they finally turned a corner and are now slowly on the way back up. Am on antibiotics just in case I pick anything up, and am injecting myself daily with blood-thinning drugs to sort the clot out but hopefully I can look fwd to some calm now. One more blood test tomorrow then my lovely boy and I are off to the coast for a week. We’ve managed to rebook Thailand for January so all’s well that ends well.

I cannot tell you what a massive tailspin the whole thing put me into though and I think it will take me a little while to catch up psychologically and emotionally. I’m feeling quite drained. Not only was I admitted twice, I also moved house right in the middle of it so to finally get home to a strange new house in an area you don’t really know has been a challenge. It’s LOVELY though, already we are very happy and starting to get the place in some kind of order. And we have silly little plans about growing stuff in the garden and getting a beehive and producing our own honey eventually which we’re both quite excited about (seriously!).

As well as being really tough for me, the medical madness has, I believe, also been particularly tough for him indoors. My plan was always to introduce him very slowly into my alternative world and unfortunately he’s been smacked right in the face with a harsh, scary and very cruel reality. I’ve been very difficult to handle, he can’t do anything right and I’m sure the pair of us are shitting ourselves. And when there’s fear on both sides, it can be hard to make sense of anything. But we muddled through and are both very glad I am home now (well can’t speak for him I suppose but I know I am). We’re really looking forward to our little holiday on a West Sussex beach now things have calmed down in a bit. Thank you John via Katie! 🙂

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Hilariously they make visitors wear a plastic apron and gloves in case they bring any nasties in with them. Here’s my friend Beth.

Still here

Sorry I know these blog posts are getting really boring now – believe me it’s boring writing them – but I’m still in hospital and not sure when I’m coming home. The platelet top-up worked but now, ridiculously, my neutrophils (immune system basically) dropped off yesterday and got worse overnight so I’m at risk of catching an infection and have been moved back to a private room which I’m not really allowed to leave. Trying to be zen-like but it’s getting tough when I’m soooooo desperate to finally spend some time in my new house and it seems to be one thing after another but am hanging in there and have had a steady stream of visitors all day to keep me occupied.

Guess that’s all I can say for the moment, hopefully it’s as bad as it’s going to get now and tomorrow things will start looking better and I might be able to go home?

A toast to Meg

Unbelievably I’m back in hospital, this time not for the clot but because my stupid platelet count is getting worse not better. It’s a horrible coincidence that I had a clot earlier in the week when in fact if my platelets had been low THEN, I would never have got a clot in the first place! Argh! The chemo I’m on is notorious for clobbering your platelets, it’s just v unlucky it’s happened a couple of days after the whole clot business.

Anyway I had a transfusion last night and am due another blood test this morning to see if they’ve gone back up. They’re saying I need to stay all weekend, I say a very firm no chance. As lovely as the staff are, I really don’t need to be here, am perfectly well and am just taking up valuable bed space. And let’s be honest, at some point in the (hopefully very distant) future I’ll probably have to spend a lot more time in hospital so staying here, surrounded by very poorly people, is really not good for my mental state at the moment.

The house move went well, all down to lovely Meg, Rob and Daz who orchestrated the whole thing while I just wafted around not doing anything. Extra big kudos to Meg for being her usual wonderful, mummy self and spending the whole day cleaning my old flat yesterday. Really couldn’t have managed without her, not just this week but since the day we met a couple of years ago. Anyone who knows her knows she’s completely reliable, kind, funny and incredibly warm and she’s been my wing woman SO many times, despite having her own shit to deal with. Hugs and kisses to you Megan Fisher, a big pressie awaits you when I get out of here.

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A big clot

Am finally home after 2 night’s in hospital. Exhausted and dazed but I know people are keen to hear the latest (from the amount of lovely texts and emails I’ve had) so I’ll keep it brief. Basically they found a whopping great blood clot in my neck caused by the portacath. Got into theatre last night, had portacath removed and am now on blood-thinning drugs to help the clot dissolve. Well supposed to be but there’s a slight additional problem in that my platelets (things that make your blood clot) are too low so I can’t actually start the drugs till they go back up. I managed to persuade them to let me come home tonight on condition that I go back tomorrow and the day after for more blood tests.

This does mean that Thailand is off for the foreseeable as too risky to fly long-haul. DVT is a high enough risk for anyone but when you’ve already got a clot, the chance of it breaking off and implanting itself in my brain or lungs is about 30 per cent. No brainer really. Could be back on as early as next week but at the moment I don’t want to go anywhere near a plane. Obviously I’m gutted but can’t help feel lucky that this happened now and not while I was over there or even worse, mid-flight. I’m also congratulating myself for plonking myself in the Royal Free on Monday and insisting someone saw me and I have to say, from the second I walked in there, every single one of them has been amazing.

That’s all I know for now, am hoping that’s the end of it for now at least and I can get on with moving house tomorrow (well, Meg, Daz, Rob and the Boy Wonder will do all the hard work seeing as I am under strict instructions not to lift or move anything heavy – thanks guys!). Does mean there is a problem for the next round of chemo. No portacath = it’s going to be hard to get the drugs in me and the veins in my arms are shot from all the chemo I’ve already had but in the long list of things I have to think about it’s about halfway down. And am hoping my shiny, lovely new team at the Royal Free will sort that out. If there’s one good thing to come out of the nightmare that has been the last 5 days it’s been that I’ve met them and finally I have confidence in the people who are looking after me.

Thanks for all your kind thoughts – I’m stunned and knackered but v glad to be back in my own bed tonight (for the penultimate night, eeeek!).

A right pain in the neck

Well well well. Not really sure where to start with this one but I’m currently sat on my bed on the oncology ward of the Royal Free, having stayed here last night. Still not sure what I am doing here or really how I got here but basically the last few days has gone something like this…

Thursday: have chemo as normal. Feeling quite knackered before I started but nothing new there given I’d had a blast the week before too.

Friday: head off to Latitude festival for a weekend of fun with old and new friends. All going well, lots of laughs, fair amount of booze, still quite knackered.

Saturday morning: wake up feeling really crap and with a massive pain in my neck, like someone is stamping on my throat and I can’t move my head properly. After wandering round feeling miserable and really not enjoying myself, make the decision to go home. Drive home, cry on boyfriend out of sheer frustration and disappointment.

Sunday: still in pain so go to Homerton A&E/walk-in centre to be seen by some complete dickhead who tells me I’ve “probably slept funny” on my neck. More crying at home out of yet more frustration at yet another battle with ‘the system’ (if anyone from Homerton reading this, I sincerely hope you recognise that sending a cancer patient away with that kind of advice is not good). In the meantime, neck now starting to swell and bruise.

Monday: see lovely GP who says he’s at a bit of a loss as to what could be wrong and best to see oncologist. Speak to Alison’s PA at the Royal Free (where I am due to transfer to but haven’t yet) who says get to A&E and ask to see the on-call oncology doctor. Doctor comes, Alison’s registrar (ie her #2) comes and FINALLY I start feeling like people are listening to me and taking me seriously which is all I’ve ever wanted really but got none of at UCH. Blood tests done, chest x-ray done (to see if portacath has moved – this is my ‘feeding tube’ that sits under the skin in my chest, they use it to get chemo into me). Portacath hasn’t moved. Still not sure what the problem is but suggested I stay overnight and they’ll do more tests in the morning.

So here I am. Waiting for an ultrasound scan on my thyroid this afternoon to rule that out. It’s horrible being here, I should be in work, I should be packing to move house on Thursday and most importantly, I should be getting excited for Friday and the amazing holiday the boy wonder and I booked almost 3 months ago, the holiday that’s been keeping me sane whilst I’ve been throwing my guts up from chemo. The holiday that there is now a fairly large question mark over if we don’t get this neck thing sorted. I’m on the oncology ward which is terrifying as there are some quite poorly women here and it all feels painfully real now.

On the bright side though, in the last 24 hours I have seen two oncology doctors, a registrar and a breast nurse. I don’t even know who the equivalents would be at UCH, despite having been there for almost a year. I suspect I’d still be banging on the front door over there, if I hadn’t transferred here. So, as frustrating as it is to be here, am hoping it’s all for the greater good and that they fix me quickly so I can get on with moving house and going away for some time with my boy.

All members of Team Cancer please mobilise, I may need some help over the next couple of days…

Breaking taboos

I LOVE what Macmillan have done today. If you haven’t seen, they’ve published a report which shows that 40 per cent of people will get cancer at some point in their life, and it’s been all over the media. The PR person in me thinks what a bloody great campaign and the whole media team should be really pleased and proud. Their spokesman Mike Hobday has been fantastic at capturing and communicating the bigger story – largely that the big C shouldn’t, and in many ways already isn’t, the taboo subject it once was. So right. SO RIGHT. It wasn’t long ago that even saying the word cancer (look, I just did it, ‘cancer’) wasn’t done, for fear of scaring the shit out of people and I’m

sure many people just didn’t want to face it because of the horrible connotations it came with. But – and this is only my humble opinion, I’m no expert and I certainly don’t speak for everyone – it feels like things are different now. Macmillan have rightly pointed out that, while many more people are likely to get it, survival rates are on the way up and I know from personal experience that huge strides are being made in treatment, all the time. It’s still devastating and I’ll never get used to it or really ever accept it I don’t think but the fact that awareness is being raised about the realities, and also what the health system needs to do to adapt, is hugely positive. I think so anyway.

Cancer is obviously an incredibly personal thing and I made the decision very early on that I was going to be open and honest, sometimes brutally so, about what it’s actually like. Not everyone shares that view and that’s their absolute right. But for me, it’s really really important to show it in its true colours. And that includes not being ashamed or embarrassed about it. The whole thing is difficult and life-changing enough without having to keep it as some dirty little secret. Breast cancer used to be something that women had ‘a long illness’ with, it certainly wasn’t done to discuss it. And as for surgery… boobs are still so associated with femininity (obviously, duh) that I’m sure many women would never admit to having had any. Many still don’t which again is their choice but I guess the point is they shouldn’t be made to feel like they can’t. I have one boob and a monstrosity called Frankenboob (which celebrates it’s 1st birthday tomorrow incidentally). Clearly I’d rather not have had a mastectomy at 30, before I’d had chance to breastfeed children but them’s the brakes. I mentioned before that I’m now on the Board of Breast Cancer Care who have a long and impressive history of support and campaigning for anyone affected by breast cancer, and I really am excited about being part of their work going forward, in whatever way I can. I owe it to myself, to them and to anyone else who ever faces this disease. We desperately need organisations such as these to fight for us and our rights as patients and people.

Anyway rambling a bit now (waiting for chemo to arrive, it’s v dull) but from me to you Macmillan, a massive thumbs-up.

A really good response

There’s some fact about how many words the average person hears in a typical day, can’t remember how many, suspect it’s in the tens of thousands or something, but yesterday I only heard four: “a really good response.” You might have already seen on FB or Twitter that my scan results yesterday were very good. Having had 7 months of increasingly bad news, things seem to be back moving in the right direction, for now at least. The chemo I’ve been on since May is really doing what it says on the tin. When I saw Alison last week, she very much managed my expectations about what we’re aiming for here and in fact, rather than the things in my lungs staying the same size, which would have been a good result, they’ve actually shrunk by a fair amount.

You don’t need me to tell you how that feels. It doesn’t change the overall outcome, I’m never going to be cured (and remember the first lot of chemo I was on in autumn last year worked brilliantly at first then stopped) but one 20 min appointment has meant a bit of a shift in thinking. That’s how constantly up and down this thing is – yesterday morning I really wasn’t expecting good news and was semi-preparing myself for the fact that things were deteriorating quite rapidly and how long will I actually be here? What does that mean for family, friends, my beautiful but still very new relationship, the job and colleagues I love? How can I possibly accept and deal with the pain they are going to face if I’m not here any more? And then, four small words change all that and now I’m very much of the opinion that this isn’t (yet) the immediate death sentence I thought it was, and maybe this could eventually be a long-term, chronic but MANAGEABLE condition, like AIDS and diabetes are now (largely?). Of course I’m still scared to death but at least I have a little breathing space until my next scan in August (two more cycles = four hits of this same drug, had one yesterday and it’s as unpleasant as I remembered. I’m still in my pyjamas with no plans to get dressed and just about holding food down now, yum). And before that, the boy wonder and I have two glorious weeks in Thailand v soon. We both need it, individually and as a couple I think, this can’t be easy for him and we’re having to build a relationship based on very different foundations than ‘normal’ couples. And I’m moving house, somewhere bigger with a garden and away from all the associations of this flat. When I moved here I was ill, bald and brokenhearted and now I’m only one of those things. It’s time to move on and make plans. Yesterday morning I was really wondering if that was possible and it definitely is now.

I’m also happy to be transferring hospitals from UCH where I have had a total nightmare, to the Royal Free as of next month, which I am hoping will also help in this ‘new start’ frame of mind but I’ll save that particular narrative for another blog. It does not make happy reading!

I’ve been touched and quite frankly gobsmacked by the support I’ve had from everyone reading this blog, many of whom I’ve never met. So thank you for rooting for me, wherever you are.

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