Canteen and Warwick

I think its been almost two weeks again - I dont remember much of what I've done since last chemo. The standout events would have to be last weekend and tonight. I got to see a few friends last saturday as well as the second version of Frankenstein (did I mention this fabulous production in a previous post? I hope so - it was directed by Danny Boyle and generally excellent). I hope Dendy shows more of these National Theatre Live productions from the UK. Assuming they're all to a similar standard.

On Sunday I attended a high tea organised by the Warwick Foundation (I'm never sure if that's said War-wick, or Wor-rick). They're a group who do nice things for young adult patients (18 - 40) like organise high teas. It was great, I took mum as my plus one and we met some really nice people and talked about all that treatment stuff that is just day to day life for us, yet not something we get to talk about casually very often with non medical professionals. Plus the tea was lovely. Best scone I've ever had for sure. Later that evening I had dinner with a few more friends. I had eggs benedict, so perhaps it was more brinner than dinner. When they say All Day Breakfast on Gus's menu, they mean all day.

Tonight I had dinner at The London with a group of Canteen members, all 18+. It was my first Canteen event. It was bigger than the Warwick tea (9 guests) with 12 people I think. It was great to meet two young patients/survivors; one was actually just completed treatment for Ewing Sarcoma 2 weeks ago. He opted to do the IE/VAC chemo protocol I was on initially on a two week cycle (what they do with kids) where I had gone with the three week which is more usual for people our age. As a result he is finished after 7 months, half the time I've been in treatment and the treatment appears to have been successful. Its difficult not to think about whether or not that could have been the case for me too. But there are a lot of important differences - how far along mine was when it was found (his met/s weren't so far along I think; I already had three that were a reasonable size by the time it was caught.) Plus the location and the size and the necessity of major surgery on vital organs for me. We shall never know what difference it may or may not have made, so there is absolutely no point wondering.

Talking to other patients - and even other types of members of canteen - does seem to highlight just how much treatment I've had; how long I've been in treatment, how intensive its been in comparison to some other protocols, how I've had radio as well as chemo and surgery and none of them just once.

Been having transfusions fairly regularly since I was discharged it seems, but my marrow does seem to be slowly improving I think. Though I would not be surprised if I quite some haemoglobin after chemo tomorrow. Maybe they wont check and it'l wait until Monday. That'd be better - its a very short day tomorrow without it, and there are things I'd like to do after treatment tomorrow if I have the energy (fingers crossed!).

Definitely been sorer this last week than I have been recently. Particularly in my lower right back (the spot in my sacrum I think), upper back (I think there's a spot there) the tops of my femurs/in my hips (spots there too), my right shoulder (top site from the rod surgery) and my right shin (hopefully thats juist from walking and not something new. I dont know if this means growing, healing, my body getting used to my current dose of hydromorph, or the fragile bits of my body responding to my being much more active than I have in many months.

I'm starting to feel a bit more normal again. Well, a bit more like I did in summer before all the new stuff. Still doing lots of cooking and feeling like doing stuff more. I still dont really sleep longer than 3 - 6 hours at a time so fatigue still keeping me from being as social as I'd like (plus its super duper cold). Also starting to make my room feel like a bedroom again rather than a space to dump medical papers and sleep.