This crisis is showing that when it counts we can all build community. We can and do need each other and politics need not be nasty.
As a shielded person, I’ve been advised to stay in for at least 3 months. Yesterday I had a rare outing. I had to go to Kings. While there I saw 2 consultants from separate clinics and also my lovely registrar. I had a blood test and while waiting for the results I had a drip of IVIG (immunoglobulin therapy) This is medication in short supply and my case had to be approved before I could start treatment. The idea is to build my immune system up so that I have some ability to fight infections. As I don’t have a line in anymore I needed a cannula fitted. It took 4 attempts to get a working cannula in situ. My arms were quite sore by the end of it all. I had 2.5 bottles of this very expensive medicine as well as some IV steroids and antihistamine to stop me reacting to the medicine.
After that was finished I was then given 2 bottles of calcium and then a large bottle of phosphate. My phosphate was exceptionally low apparently. The problem is the infusion lasts 6 hours. It makes it a long day. As least it was a change of scenery.
When I was chatting to Victoria, the lovely haematology consultant she said she was reluctant to change anything as I was still getting used to the chemo drug. I was sick again the other morning after the dose was doubled so she decided to build it up more slowly. I asked her why the phosphate was so low and she didn’t know. She said it could be a kidney problem and as my kidneys don’t always work so well that was a theory. She was going to order some extra blood tests.
We chatted about the impact of isolation. She agreed that many haematology patients were excellent at this and infection rates were low in haematology patients as a result. I said it was good to be doing things differently and not be going up and down to Kings often several times in a week. I said I hoped we would keep some of the positives that have come out of doing things differently. I’d prefer to have one really long day than several times in a week.
I’ve got to keep injecting my tummy for at least another month/6 weeks. As you can see there’s not many places left that aren’t bruised.
I’m very grateful to have a garden to fall asleep in and also store my name from #makebloodcancervisible campaign a few years ago. Outside space is a real bonus when you can’t leave the house. My heart goes out to those who live in flats and don’t get outside so often.
It seems to me the long gap of no ECP has really started to impact. I’ve got a rash and my skin is tight and very dry and itchy. I have bad gut ache at times but a positive is I’m not running to the loo so often. I’m more nauseous but have only been sick a few times. My appetite is not so good but I am still eating.
My muscles and joints are very sore and stiff. My mouth is exceptionally dry as are my eyes. My hearing is not so good and I’m exhausted most of the time. Apart from that I’m fine! Lol 😂
I now have beautifully tidy drawers, not so many odd socks. I’ve found so many pens I could open a stationary shop. 😜
The other nice thing to happen was a delivery from the OT (occupational therapist) I now have a bed lever to help pull myself up and a surround for the loo to make getting up easier. It really is like sitting on the throne now with the arm rests. 🤣
So going forward I have another long day at the hospital in 4 weeks but can go sooner if I feel I need it. My mission for the next month is to see what mischief I can get up to from home. If you’ve got any ideas, then please let me know.
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