tiltingheads

Cancer and other stuff

Archive for the month “October, 2011”

Alison

I’ve talked a lot about Alison in many of my posts and you’ll know how much I adore her. She’s v no-nonsense, immensely clever, totally bosses the men around (and bear in mind she’s in what is, I think, is a very male-orientated profession) and comes highly, highly regarded by her peers. She spoke at a conference I was at a couple of weeks ago and totally blew most of the male speakers out of the water. She’s also the chair of God knows how many clever, techy cancer bodies and seems to have drug companies in her pocket; she’s hugely charming and a very clever networker which are qualities you absolutely need in the person who is effectively in control of your life. She’s made the research and treatment of breast cancer her whole lifeĀ  and I for one am SO grateful for people like her. She also likes bags and shoes. A lot. Having seen her no 2 last week, who is lovely and very good but probably not as familiar with me as some of the others in the team, I was a bit alarmed and confused all over again about what was apparently going to happen in terms of more chemo, weird things showing up in scans etc which meant they were being brought forward and it’s so easy to freak out when spanners like that get thrown in the works. But having seen The Boss yesterday, she could see, both from my consistently low blood results and just my general demeanour that I’ve had enough and she is happy with me having my last chemo session today, as opposed to one more in 3 weeks. I don’t mean to moan, but chemo is tough and these particular drugs are quite a lot more brutal than anything I’ve been on in the past. I’ve done this 7 times now and have dragged and puked myself through the last few times. I desperately need a break – physically, psychologically, every other possible way. Andy and I both do. This is as hard for him as it is for me. And I have a job that needs more of my attention, and a life to get on with. My next scan will be on 9 November as opposed to January and they’ll scan my neck too this time to check there’s nothing suspect re this clot or my thyroid which feels quite big at the moment (if you see me constantly swallowing, that’s why). ASSUMING no big surprises, it’s bye bye hospital for a few months and they’ll just monitor me regularly after that to see what happens. This means it could be AGES before I go back on any treatment (pleasegodpleasegod). And I won’t have to spend an average of once or twice a week there sitting around in waiting rooms which is what I’ve been doing for over a year. Of course I’m a bit nervous about what might happen during that time but if The Boss says it’s OK, then I’ll take it and bloody well enjoy it while I can. I can’t spend my life shitting myself about the future, nor spaced out on drugs the whole time. What will be will be, it’s today and tomorrow that’s surely most important cos they’re gone all too soon and in years to come, I don’t want to think I wasted my ‘good’ time while I had it. Anyway the point of all this is that, yes in an ideal world I probably would have ‘just’ one more chemo session but Alison has listened to me, understands I’m knackered and I have a trip coming up that I seriously need to be well enough for, and she’s prepared to make that the priority. Which I could kiss her for. Too many doctors and oncologists in particular don’t treat you as a person, just a patient, so when you get one who does, you need to hang onto them. I wish I’d had Alison right from the very beginning, I suspect things would be very different by now if I had. But I have her now and she’s fabulous. On my list of things to be grateful for, she’s right up there. Everyone should have one like her.

Too good to be true

So there I was thinking I was on the home straight when BAM, it’s all a bit up in the air again. Just quickly – supposed to have what I thought would be my last chemo until next year today, but surprise surprise we’re back to low platelet count again so it’s delayed another week. OK no biggie except I then discover they’re taking me to the maximum 8 sessions of this drug so there’ll be one more in November (cue little voice going ohgodohgodohgod what about Thailand? But still ages away so not panicking yet). I do love Alison but she’s a bugger for moving the goalposts, I only thought I’d be having 4 or 5. Mustn’t complain though – two things I desperately wanted from this drug: for it to work and to keep my hair and I have both those things. And I went to a conference on secondary breast cancer this week and realised there are SO many women who have it loads worse than me, so blessings definitely counted (although I was a bit disappointed to hear there isn’t really much on the immediate horizon to treat triple negative cancer and that PARP inhibitors may have been overestimated. BUGGER).

What they didn’t tell me at my last scan result is that there is ‘something’ showing up round my neck which perhaps means the clot hasn’t quite disappeared. I’ve been injecting myself every day with this blood-thinning drug since July and was initially told it would ‘just’ be till December but now it sounds like it will be indefinitely. Which again, is no big deal. After the first few weeks of going “eeeeeeee, I can’t I can’t!” and making Goldenballs do it, I’ve got it off to a fine art now. Anyway they’re now bringing my January scan forward to November, and will have another look at my neck, just to be sure. Oh, and on top of that, they now think there might be something a bit odd going on with my thyroid so it’s an ultrasound and another sodding blood test next week.

So there we are. All these things in isolation aren’t really major but add them all together and it’s a bit OH FFS. The clot thing worries me the most, especially as I will be getting on a long-haul flight in 70-odd days and I really don’t want to spend the whole journey in terror that something terrible’s going to happen as we’re flying over India *shudders*.

It’s at times like these that TREATS become important and I have the ultimate treat coming on Monday… a brand spanking new car. Just because. And I feel really, really well at the moment too so that’s good. Hurrah.

My day

It was Secondary Breast Cancer Awareness Day last Thursday. You’ve probably been confronted with PINK at some point this month, and the things I’ve seen, read and heard about breast cancer over the last couple of weeks have been about people recovering, getting ‘better’, not getting cancer again years later. Which is, of course, brilliant. Survival rates are sooooo much better than they were 50, even 20 years ago, and that’s largely due to earlier detection and a whole load of new and exciting drugs and treatment. High five. BUT October can be really difficult when you’ve got secondaries. Fact: breast cancer still kills. More women than it should. About 12,500 people every year at the moment and sometimes that’s what all the pink disguises. There is nothing sexy, glamorous or sequin-sparkly about breast cancer. It’s the least fun thing I’ve ever had to do. But you just crack on. And I’m very lucky in that I have absolutely amazing employers, who have really busted a gut to support me. Not only did I have a full 9 months off the first time round to get through treatment, I also had regular presents, well wishes and general all-round “go girl, we’re right behind you” vibes. Then, after I make it back to work for a paltry 6 months before getting cancer for a second time and the chaos that being diagnosed with secondaries brought that time, they created a new role for me, away from the stresses of direct client work (sorry any ex-clients reading this but it IS quite hard work sometimes, much as I love you all). My new role, which I’ve been doing since January, means I’ve got the time and flexibility to accommodate treatment, hospitals, down days etc. And I actually really love it. Not everyone in my situation can say they’re as lucky. So hurrah and big up Lansons on that front.

Twitter followers will know I’ve not had the best experience from my first hospital over the past 12 months, to the point where I still had no breast nurse with no suggestion of actually getting one, couldn’t stand it any more, cried on Alison and decided to switch to the Royal Free where she also practices from. And thankfully, things are much better now. I have a bigger team including, *squeals*, a breast nurse, lovely Ruth. Breast nurses are like key workers, they sort of manage everything for you, and when you have secondary breast cancer, there are a lot of things to manage. If your blood levels drop, your chemo gets delayed. If chemo gets delayed, your scans get pushed back and so does your next oncology appointment. It’s all admin and when you have no-one to help you with this stuff, trying to co-ordinate these things yourself is a total nightmare. It all came to a head when I got that blood clot. There was literally no-one I could call and speak to about it and being told by the muppet in A&E that I’d “slept funny” on my neck, when I actually had something that could have travelled to my brain in minutes and killed me on the spot was just the final straw and I ended up leaving the hospital in tears, again, that no-one was listening to or helping me. Anyway thank God I went to another hospital, the Royal Free, and v quickly became acquainted with my new team who are all great.

I joined the board of trustees at Breast Cancer Care in the summer as I knew I probably wasn’t the only one having a hard time but I was shocked and actually quite sad to hear how common my experience is amongst other women who have secondaries. There is v little on-the-ground support for us. It’s like you’re expected to know the ropes cos you’ve already had cancer once (although some get secondaries from the word go), and you just get given up on. Like “whoopsie, you’ve got secondaries, oh well there’s not much we can do for you now”, so they just pump you full of drugs and let you navigate the rest of it yourself. I had two breast nurses and a chemo nurse the first time; for the best part of a year I had no-one. Except Alison whose day job is to be at the frontline of new treatments and work out the best way of keeping my cancer under control, not counselling me and making the phonecalls I might need to CT departments, or pointing me in the right direction of people to speak to about benefits, where I stand legally work-wise, alternative therapies that might help with side effects, people I can go to for counselling. That’s not her job and to be perfectly frank, it’s not mine either. I have a big enough job trying to get on with life and stay relatively sane.

I totally get that breast nurses have a massive case load to deal with and I’m grateful to now have Ruth, but what I REALLY need, what we all really need, is a secondary breast care nurse. Because primary and secondary breast cancer is not the same disease. They literally couldn’t be more different, having secondaries is SO much more complex and, ultimately, devastating. So why do I get less support this time round? Is it because the medical profession has effectively given up on me? Should I therefore give up on myself? Of course not. But having to constantly battle, psychologically, mentally and practically, against a system that is supposed to be helping me is exhausting. I’m not a difficult or demanding patient, never have been, but I literally had to get off my arse and do something about my situation and what worries me is that other women in my situation might not feel string enough to so they suffer in silence which is not right.

Breast Cancer Care is campaigning against this, and for more secondary breast care nurses (there are currently 20 in the UK, vs around 500 primary breast care nurses, despite estimates that around 12,000 women a year will be diagnosed with secondaries) and I’m pleased and proud to be associated with this. And it’s important to add that progress is being made. WE DESERVE IT. I’m not stupid, I understand that the NHS is not this solve-everything-bottomless-pit-of-money-that-can-work-miracles but for God’s sake, it’s totally unacceptable that we should have to face this on our own.

Rant over.

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