Update on cancer: All well. Scan results all more or less negative. Tiny progression of tumour (tell my eye that. It feels like something is pressing on it) and, although I have lots of new skin mets, the back of my neck feeling like I’ve an exaggerated version of nettle rash, there is “nothing life-threatening”. Plus, the referral to Ophthalmology has been accepted this time, presumably because Dr U phrased it differently, so maybe something can be done to lift my eyelid a bit so I don't look like someone’s punched me or I’m winking lasciviously!
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| Never search images for ‘lascivious’ |
So why do I feel ambivalent? It’s not because Dr U is leaving (next Friday) though it is hard when someone has been there, tracking my progress, looking for alternative treatments and making the right calls. I was introduced to T, a prescribing nurse who will be taking me on, and I’ve been added to Dr K’s list. He’s the oncologist I consulted privately in 2018 who persuaded me to move into the NHS at St James’s (thank god I did) and he’s the head of the team. Dr U says he doesn’t think there’s a better oncologist anywhere. To be honest, I don’t care about ‘better’, I care about having someone who genuinely cares, checks what’s going on regularly and who will play the waiting game Dr U has played: there have been several times when a different oncologist might have decided it was time for another treatment whereas Dr U advised me to wait and see - and each time, my body rallied round and cape carried on working.
So why do I feel ambivalent? I feel a bit of a fraud. Yes, I’m constantly exhausted and the last 4 days have been spent mostly in the loo, including at the hospital, but I don’t feel pain, it’s hasn’t (yet) spread to any invisible organs, and I don’t keep getting admitted to hospital and wired up to drips. This is what is happening to almost everyone in the support group. I just plod along and feel a fraud. I know my cancer is just as bad and, perhaps, more dangerous but there’s no evidence of it. I look fine, apart from a swollen eyelid and a huge pot belly. I look healthy despite the constant fatigue (apparently cape is attacking my bone marrow - great!) and I certainly don’t look like a cancer patient, whatever that means. It’s a case of Imposter Syndrome, I feel. Yet I asked some pretty difficult questions like what’s going to happen, what changes can I expect to see - and it just doesn’t register with me at any emotional level. I just accept it and move on.
It won’t last of course. But I’m unique in the hospital and, great though that sounds, it reminds me that actually nobody really knows wtf is happening here. And I’ve no one or no case study to compare myself to. Really, I should be grateful, shouldn’t I? And I am, I definitely am.
I’ve been rereading my blog from the start. I’ve got to the end of treatment and the start of the pandemic. It’s been bittersweet. I can smile at the optimism of “It’s only a disease” yet I’m taken aback by casual references to a sign or symptom where I should have thought it’s coming back and done something about it. It wouldn’t have made any difference but there actually were signs before I’d even finished treatment. Yet here I am with “nothing life-threatening” yet a diagnosis of Stage 4 Triple Negative breast cancer, for which the prognosis is crap. And it’s 2 years on, still on first line treatment, I can see future research into TN having to add a rider that there’s always one awkward bugger who defies the odds!
Now, one thing I’ve noticed is that this blog is DULL so I am going to have to find ways of enlivening it a bit. This is what happens when your life revolves around bloody cancer - there’s no room for anything else! So, to make you smile, this is the reverse of my first attempt to crochet to a pattern. Imagine, every one on those threads has to be woven in - and I’ve done over 150 already!! Lesson - learn how to weave in during crochet process, as with knitting. Have a good laugh at my expense :
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