Well not all over, strictly speaking. Just my belly which is not only black and blue but also purple, yellow and green. Let me explain.
I started on blood thinners four months ago to dissolve a blood clot in my belly. The cancer had broken through the wall of a major blood vessel so my body had laid down a blood clot to protect it. The problem is that this blood clot could break up at any time with potentially fatal results. Hence the blood thinners to dissolve it and daily injections in my belly to deliver them, with accompanying bruising. It’s most attractive, I can tell you. Bikini ready, anyone?
When I saw the haematologist three months ago, she said the plan would be to get me off the injections and onto tablets. Hurray! When I started my latest clinical trial in December, my oncologist said she’d like to leave it a couple of months to allow the side effects of the new treatment to become manifest. That way, she’d be able to distinguish trial drug side effects from blood thinner tablet side effects. She checked out which blood thinners the trial sponsors, Astra Zeneca, would approve for me and came back with a list of two.
So today I trotted off to the haematologist, clutching in my hand a bit of paper with the names of these drugs. Ah, said the haematologist. The first of these is an injection and not clinically appropriate. The second is a drug that we don’t carry at UCLH. She felt there’s no clinical difference between the drugs they do carry and the one approved by the sponsor - although there is a cost difference. That’s why they don’t carry it. She’d get me the recommended drug if that’s what I needed but if not, then we’d use another drug.
She spoke to my oncologist who said yes, she’d asked the question and the answer had come back that there are legitimate concerns about drug interactions. So I’m stuck on the injections for now while the haematologist works out how to supply the drug I need. It’s possible that my GP can prescribe it. I await developments.
I also mentioned to her my worsening lymphoedema. It improved dramatically after I started on the blood thinner but it’s started to come back. She recommended a leg ultrasound to rule out a blood clot. Not another appointment! But no. She rang the vascular department. Could they fit me in today? They can? Splendid! She lent across the desk and told me conspiratorially that there are some advantages to being the consultant.
By the time I got from haematology to the ultrasound department, they were waiting for me. No blood clot, thank goodness.
Phew! What a day.
Dear
im exhausted just reading that, your head must have been spinning. My nurse at haematology is great at using her contacts to get me scans etc without going on some never ending waiting list, where there’s a will there’s a way !
somebody called me formidable the other day and I immediately thought of you, I think you have a spine made of cast iron to enable you to stand up to the rigours of being on these trials and all the toing and froing involved. I see you as a someone who is helping themselves and helping others at the same time, so keep up the good work my friend. I salute you.
