Caped Crusader

Now I don’t want anyone to get silly or hysterical about this but…I have now started chemotherapy. And, before you start leaping to conclusions, let’s get a few things straight:

It’s not the same chemo I was on last time – that was AC, this is Capecitabine. That was administered as an infusion, this is tablets. The only similarity is they are both 3 week cycles.

I am not going  to lose my hair. It might possibly thin a little, but even that is unlikely.

I am not going to be throwing up all the time, or generally a bit weak and wan. If you remember (if you knew me then) I was a bit limp for 2 and a half days out of each three week cycle and spent the rest of the time, working my ass ( and tummy and thighs and various other wobbly bits) off in the gym. And Capecitabine is even better tolerated!

I am not at any increased risk of infection. My white blood cell count, and therefore my ability to fight infection, is unlikely to be lowered significantly by this chemo.

I am not at death’s door. This is not some last ditch attempt to preserve my life for a few months longer; the cancer is still not life-threatening and hasn’t spread beyond the breast, liver and bones. But it has worsened a little in the breast and liver so the Tamoxifen wasn’t holding it back and it was time to try something else.

Capecitabine is an oral chemotherapy so I just take tablets – fistfuls of them – morning and night for 2 weeks and then have a week off. I’ll have a CT scan during the second cycle, to see if it’s working and, assuming it is, will have something like 12 to 14 cycles. I worked that out as about 8 or 9 months.  The benefit of an oral chemo is I don’t have to schlepp over to Sutton every 3 weeks and be hooked up to a drip for an hour or more. Except I do have to go to Sutton at the end of this cycle, and the next and probably pretty often throughout – nothing’s really going to be certain until I have that CT scan. So far I’ve had no side effects at all, but wouldn’t really expect to during this first cycle, or the next one, much. Then it’s the school holidays and I can monitor my energy levels and generally see how I’m getting on and whether I need support at work. But the ever-lovely Dr Charlie went for Capecitabine as he felt it gave me the best chance, and a very good chance at that, of staying in work and on my bike. Not that I can cycle at the moment as my slightly broken leg continues to be *%&£^%ing painful – I actually had my first day off sick, since joining Sustrans, last Friday as I couldn’t actually walk! And my nice GP has left the practice so I’m effectively without a doctor – I’m very close to turning up at A&E, claiming I just did it. Although the bone scan didn’t show anything new in my hip, I know the cancer is there so of course it has occured to me to wonder if that’s the source of the pain or hairline fracture or trapped nerve or whatever it is I’ve done!

I was going to tell you all about how rubbish the Clinical Nurse Head-Tilt & Sad Voice is, but you know what? I can’t be bothered! You’ve heard it before, and so have I - I need to make hospitals realise that a job title does not equate to providing a service; the job title holder has to actually do something! Starting with talking to their patients and finding out what they want/need. I have a set of tools, in the Breast Cancer Care Standards (you know, that Launch I went to), so I think I’ll contact the Marsden’s PALs and suggest we meet up to look at how the Marsden isn’t meeting the standards, casually mentioning I didn’t see either of the CNS for secondary breast cancer at the launch, and how they might like to work with some of the patients to improve their service. I’m also very vaguely toying with the idea of a work-based support group – when I told HR about having cancer, their response was “Oh we don’t have a policy on that; we’ve never had anyone working for us have cancer” Really? In 30 years and with all these employees, none has been affected by cancer or any other long-term or chronic illness? Not very likely! And just a month or so ago one of the Regional Directors put out an email, informing us of the death of an employee from cancer, and I already knew of A.N.Other, working for Sustrans, who is currently being treated. I’m not sure what form a support group would take; I’ve never been drawn to the idea of sitting around with a bunch of sick people, moaning about having cancer. And in my 5 years of dealing with this, I’ve found more support and common ground with people who have, or have had, other chronic illnesses than I have with others with breast cancer. So far all I’ve come up with is to be allowed regular (maybe every other month) meetings in work time – so the support to keep is in work doesn’t have to be taken out of sick/Annual Leave; set up an Office Buddy – someone who works in the same office and knows your health status, knows what side-effects to look out for, can call line managers/HR/whoever on your behalf as and when, just to be on your side; maybe linking with local (or National, if such a thing exists) complementary therapy providers, so we have access to the massages and yoga and acupuncture that have been proven to work, at a time and location convenient to where we work; to work with HR to develop a policy that maybe includes more than just 8 weeks sick leave per year – that’s really not very much when you could need rather more, if you’re having chemo/radiotherapy/regular surgery or whatever, and an established pattern for staged returns to work, after long-term illness. I don’t really know what I’m talking about as I wasn’t working when I was being treated firt time round, and my current employers don’t have a policy! So if your company does, or you have an opinion, let me know!

The end of term is in sight and it would be nice to have a good rest – but I’ve just accepted another 150 AS level scripts, to go with the 200 I still have from my original allocation; I’ve got an interview for promotion next week and am interviewing (for a new Bike It post) the week after; and I’ll be moving house in August – either to take up a new post in Peterborough, if my interview is successful, or just across the road to a cheaper rented house if it isn’t. I have loads of Annual Leave still to take, but no time to take it – though I am hoping to get up to Lewis, via Dundee, sometime between now and Christmas. I’m really rubbish at this “being ill” mullarkey, aren’t I?! Maybe I really am a super-hero; after all, I’ve got the Cape(citabine) and the crusade (to get a better service for peeps with secondary breast cancer) – all I need is the not-quite-as-smart-or-good-looking-as-me sidekick…any takers?!

 

Part the Second

I have an appointment with PALS (Patient Advice and Liaison Service) to discuss support for secondary breast cancer patients and Breast Cancer Care’s “Standards in Care”. Dr Charlie is going to find me another nurse. Dr Charlie is going to show me the scans and talk through all the results. Dr Charlie is going to order me an MRI on my borked leg. Dr Charlie is my new best friend!