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.
tiltingheads 