For those of you kind enough to notice and to ask after my well-being, following an extended social media absence, thank you. To the rest of you, fear not, I am still here, blathering on.
I had to take a little timeout over the summer but here’s a little update:
Basically my cancer has worked out how to outsmart the drug that has held it (mostly) at bay for coming up 4 years. Now in cancerland, 4 years is bloody marvellous. I’ve been able to live well in that time, almost forgetting I have cancer. I’ve seen Wakey start senior school, watched Pukey start junior school, seen both of them share their fathers love of football. I’ve been on holidays, got a knobdog, watching England lift a major trophy. I’ve home schooled the children and buried my dad. You do a lot of loving and living in 4 years. Even if 2 of them were total fucked by covid.
So back to the cancer situation. It’s grown in a really really awkward unhelpful place. In a place that means surgery isn’t an option. Think of nerves like strands of hair. Think of the twatty tumour as chewing gum. Now think about trying to remove the chewing gum from the hair without damaging a single strand. That’s where we’re at. What would happen if a nerve was damaged? Permanent disability ranging from a smorgasbord of fabulous options such as; bowel and bladder incontinence and loss of the use of my right leg. So yeah. No surgery. If this progression has been pretty much anywhere else, it wouldn’t be such a big deal but it is where it is, so it’s bad. At the moment, I have reasonable use of my right leg and I’m still continent but my foot and leg are pretty numb and without significant daily medication (enough to stun a cow) I’m in pain. So that’s one facet to this. The second is, what next to control the cancer if the current medication isn’t working?
In many other cancers, there are several “lines” of treatment that can be deployed if/when one treatment fails. My very rare thyroid cancer? Nope. Not so much. Fortunately, I’ve done my research and built my network and I identified a secondary line of treatment that I could move to. But…its only available;
on compassionate use. This is where your dr (or you) essentially writes a sad letter to the pharmaceutical company asking for the drug to be made available to a patient on compassionate grounds. Ie: without this drug the patient will likely die.
Privately.
Yes, you understand correctly, this drug is not available on the NHS. Thanks for that.
I am incredibly fortunate to still have private medical cover through my employer so I will be accessing the drug down this route. This does mean I will have to move my medical care to a private consultant at the Royal Marsden. I’m hoping most of the consultations etc can be done remotely and I won’t have to travel too much. But, if I have to, I will. In all honestly, since covid, my care under the NHS has been patchy at best. However, I don’t want to bash the NHS here but the failures in my care are down to a totally broken system as opposed the competency of those caring for me.
Since the summer I have increased the daily dose of my oral chemo to pretty much max power to try and eek out its effectiveness. Not going to lie. It’s been brutal in parts. Blood pressure through the roof, swollen feet, feet so sore I can’t put shoes on, sickness and diarrhoea on a biblical scale, cholesterol at 14 (should be less than 5). I ended up in hospital for three days as a result of the D&V side effuck. I’ve put myself thru this for the past 6 months because we know it’s a drug that works but it’s only a matter of time before I have to swap to this new drug which may or may not work. I’m waiting on the latest set of scans to see how bad things are. Very bad and we change, low level bad, we stick and keep eeeking. Either way, I know the scans aren’t going to be pretty. My tumour markers (blood results) have doubled. I have more pain in places where I haven’t had pain. It’s obviously gutting to know, that despite putting my body through hell, the cancer is still having a merry little party.
In essence I am living in a very uncertain place. And it’s utterly terrifying which is why I’ve retreated into my own small world of school runs, dog walks and family life. I try and get up every day and be thankful for the fact I can still shower and dress independently, I’m able to walk Knobdog, I can stand and cook tea for the kids (that only one of them will eat but you can’t win them all). These are all things which are precariously balanced. Never mind the big stuff of will I be here next birthday. That mostly gets shoved into the furthest recesses of my mind.
Having said that, I did something brave. I went and visited my local hospice. I’ve pushed for ages to get some palliative support. Just for info people: palliative care isn’t just end of life care. It’s about helping those of us with chronic or life limiting conditions live as fully as we can, without pain and suffering. Anyway, now you know.-every days a school day.
I met my palliative nurse at Marie Curie hospice in Solihull and it was both terrifying and restorative. I will never truly get used to the idea that I’m 45 and need palliative care but I’m so so glad I have access to it. It’s amazing. Wonderful caring knowledgeable professionals on standby to advise on anything at any time. Increase in pain? Call the hospice for advice. No GP appointment, no 111. It’s a lifeline and for me, like the missing corner piece of my care jigsaw. So yeah, that was a biggie. But it was the right time. Still haven’t done my will though so, I’m not all that amazing.
In conclusion I’m ok but much less ok than I was this time last year. Things that were easy 8 months ago, are now noticeably harder. But, that’s the nature of cancer. So we wait for scan results, we wait to see if this new drug works and we try not to think about the what ifs. Living in the present is the greatest gift I can give myself and probably a lesson in there for all of us to be honest.
Thanks for caring, for sticking with me and trying to understand. It makes me feel less alone at a time when I’ve never been more scared.