Yesterday afternoon I was rejoined at my bedside by grey Eeyore. Quite rightly, Jane decided he was a little too unhygienic to be in here at first. He’s now been through a full wash and tumble dry, so although he smells beautiful, he’s understandably a little ranty today. Even though the nurses love him.
Ranty grey Eeyore
His mood has rubbed off on me a little this morning. It’s not nine thirty yet and I’ve already had two good rants. The first was while I was chatting to my bed makers. Nothing to do with this hospital however! I was reminded of the time I was visited on the ward in Derby by a member of their trust board. I was more than happy to speak to her, until I realised that she simply seemed to be on a fishing expedition for complaints. Let me record now, that at both Derby and Nottingham, my treatment has been exemplary and the staff, at all levels, are amazing. The only time I’ve felt secondary is when being interviewed by that Derby trust board member. I wish I’d have taken it further at the time to be honest.
So that was my first rant. My second is on twitter, so you can follow the thread if you’d like to read it. Warning – contains NHS Brexit ranting, but if you would like to re-tweet it for me it would make me very happy!
In chemo news, I’ve just finished my third bag of cytarabine. I’m about to start bags three and four of etoposide. I’m still “functional” and putting on weight. 92.5kg this morning, although that’s probably mostly due to all the liquids that I’m having pumped into me. My appetite is still OK, but it’s more of a struggle to eat than it was a couple of days ago.
I’m wearing my happy socks (thank you to the Doyles! ) – maybe I will become less ranty as Saturday progresses.
The fitting of my Hickman line and 6th cycle of chemotherapy went well last week. I’m now rapidly approaching the end of the first phase of treatment. It’s been successful! All that’s left is a day unit appointment tomorrow for my last Rituximab infusion (held over from the first cycle of chemotherapy).
I’m also part way through mobilising my stem cells for collection next week using Lenograstim injections. These stimulate the body into making large numbers of new stem cells. My consultant tells me that they need to collect around two million per kilogramme – significantly more than are present naturally.
Lenograstim – Manufactured by Sanofi in France. I’m glad that I’m taking this now rather than waiting for lorries to clear endless customs lines next April.
These injections are fiddlier than the earlier ones I’ve had to administer to bring my white cell counts back up. Each consists of two syringes, but you have to mix the Lenograstim yourself rather than it coming pre-made. It’s not difficult to do this – just time-consuming. As the syringes don’t have a self-retracting needle, you need a steady hand. After four days of mixing and injecting I now consider myself to be an expert 🙂
There’s a chance that I may be lucky and the stem cell harvest will work first time. Mechanically, a stem cell harvest is straightforward – provided I can manage to sit still for five or six hours while plugged into their machine. The haematology unit in Nottingham said they’d had a 25% first time success rate last week. However, they will keep trying all week if not – they guarantee(*) to sort me out by Friday at the latest.
I’ve been totting up what this whole exercise is costing. I suspect by the time that I’ve had my transplant, the NHS will have spent a few hundred thousand pounds on making me well. I’m so grateful not to need to go through the endless fights with insurers that so many have to in other countries. It means I can concentrate on getting well and returning to being a productive member of society.
Today, on the 70th anniversary of the start of the NHS, I shall be raising a glass or two in thanks to the great Liberal, William Beveridge. His 1942 report made all of this possible.
(*) I’m guessing that this guarantee may come with terms and conditions …