Well, this is fast becoming my fun packed Tuesday routine – sitting at CCL having a canula rammed into my right wrist, then pre-meds, followed by a fruit juice to wash down the oversized paracetamol then large doses of Daratumumab in its grim reaper black cover pumped into my system.
It’s almost sociable today – Liz T has a friend called Abbie with breast cancer, who is at the next door chair to mine. We can have a chat, roll our eyes and give each other knowing looks about how shit it all is no matter how light-hearted a tone you try to attach to it all, then retreat back into our spaces, separated by wooden partitions – it’s like being at the office without the laptops and photocopiers.. There’a a woman opposite who I met at the ‘make up for cancer patients’ half day here – we’ve mouthed hellos at each other. She’s got a brown shoulder length wig on – looks quite like Becky from Epsom, for those who know her. And the nice chap I know, Brandon, who was up seeing Prof this morning about his Paraprotein scores, just popped down to say hello. Pretty good for a day here.
I’m always in two minds about asking people to come and sit with me now. It’s been dragging on so bloody long, and is set to continue for sodding months to come that I’ve kind of given up on arranging company. Why hang out here when it’s sunny outside? So I’ve been through the Telegraph and a copy of National Geographic Traveller mag already today to pass the time, in between ‘obs’ which is the observations they run on your blood pressure, temperature, oxygen saturation etc every hour or so. Now am in the ‘waiting for lunch’ zone, with one eye on the door and listening for the telltale rattle of the tea trolley – my usual tuna jacket potato and side salad order. Pavlovian response to the sound of jingling forks has set in.
Apparently there is no change as yet since starting this 2 weeks ago, to my PP score – they did say it would take a while but I would still like to see some evidence that this drug works for me. Prof has just been by and I asked if he would add in a second chemo drug as I gather (from the internet, my usual source of intel) that two drugs together is better than Dara on its own. Hopefully he will get this sorted for cycle 2 (week after next) – they may as well jam in a dose of Velcade by injection every time I’m here, I’m a captive audience after all.
And also asked him if Stem Cell Transplant is on the cards or not. Good news is that Charlotte the respiratory consultant has said she thinks I am an ok candidate to take through SCT, backed up by the second opinion fellow, Luke Howard. And it does seem that it is still more effective overall to have an SCT as part of the process, than not to. So it might be January 2017, 5 months into Dara when this could happen – basically when the twice a month doses drop to once a month only. What better thing to do with the extra time than to ruin it with a hideous transplant hey?
Just a shame that it’s all a bit depressing right now. A slow burn treatment, with no sign of miraculous impact as yet. And I’m waiting, waiting, waiting as ever for the next barrage of tests on back and breathing… which will as usual, probably achieve cock all.
Not quite sure how to get myself back on an even keel and take this in my stride – I can’t tell you how unbelievably hard it’s become to keep doing this, week after week, month after month. People keep telling me how well I look – well I feel like a bag of shit quite frankly. Poor H can’t think of what to do, to make me feel and better, and to be fair, I haven’t got the faintest clue myself.
Still, I have got a night away at the Pig hotel in Bath tomorrow and also a night away next week. Which will help a bit, even if it’s all about blotting out reality, just for a few hours.
Hoping they may have the half pig head, the ‘Bath Chap’ on the menu… we will see.
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