Friday 30th August… Another Strange week

I have just been reminded by one of my readers that it has been a week since my last post!

It’s been a week of adjusting and, to some extent, recuperating.

I went into hospital on Wednesday For the blood test and a chat with one of the Nurse Specialists, particularly a couple of concerns as one of my ‘dodgy’ lymph nodes seemed to be getting bigger. I also assured her that I was free for the rest of the week if any treatment was planned.

The results were rung through later that afternoon: Hadmoglobin was about the same as before, neutrophils were up, platelets were also good, however my WBC is stillcreeping up, although not by as much as I had feared. Professor Johnson had reviewed Thame and had no immediate concerns, but the plan is to admit me for two days for a reduced course of cytarabine, which it is thought will give a good response while reducing g the side effects.

I can’t help thinking that it’s a pity that we had the bank holiday as that has delayed things – I was hoping to have more retuximab, but I suppose a rapid de-bulk (again) May make the rituximab/ibrutinib combination to get to work immediately.

Meanwhile I have been adjusting to the loss of peripheral vision. I managed OK in hospital until I was leaving. I was walking along the left hand side of the corridor. scanning for obstacles when I suddenly stumbled (luckily no fall).

I looked round expecting to see something on the floor I had missed, but actually a porter had pushed a(loaded) wheelchair in from the left, just behind me and I had tripped over one of the front wheels. I just didn’t see him on that side.

However I have had a small triumph today. As trains are likely to feature in my travel and activity plans, it seemed like a good idea to make sure I was IK getting to the station. So I tried it – and the first time I have ventured out for any length of time.

I’m delighted to say that I managed OK, and while taking it gently, it took about the normal time. There weren’t many people about (they are a problem as their movements are unpredictable!!) so if I was getting of a train with crowds, I’d probably wait a few minutes for it to disperse.

But it was a useful test, hugely reassuring and confidence building, and it was good to get some gentle physical exercise.

I have been very grateful to friends who have been to see me and take me out for lunch. It has been very much appreciated and made a big difference. Thank you.

So I have coped this week and I feel better in myself and a bit more optimistic about travel. I am still thinking about an electrically assisted bike, but I still have some visual disturbances (false images) which should subside, so I may wait a while!

But overall, I am more optimistic so… Onwards and Upwards! 🙂

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