Friday 19 June… The wait is over!

Yes, I received a call last night to say that there would be a bed available for me by 8:30! I had called the splendid Lymphoma Nurse Specialist earlier in the day to find out what was happening so I knew it was very likely, but it was a huge relief to get the call from the bed manager!

I am currently in a side room with stunning views over the A&E ambulance bay and where there are some very noisy building works!

I had a bit of a restless night, a pain on my right hand side near my kidney became very bad. This was initially treated with paracetamol, but the effect didn’t last so I had som oramorph which did the trick. However it was back again this morning and needed more oramorph. The reason for the pain is thought to be pressure from an enlarged lymph node, so I hope the treatment will alleviate it.

This pain has been present for a few days, and usually resolved itself during the day (only to return at night, but this seemed much worse than before. But again, as I write this, it has gone.

But the really good news of the day came during the ward round (conducted by Professor Johnson). The blood test I had yesterday on admission showed a reduction in my white blood cell count from 270 to around 240. Still way to high, but a positive move and so it is possible that the rituximab/ibrutinib combination is working.

So the plan is to have Cytarabine as a one off short course to get the white cell count down to somewhere near normal levels and continue with the rituximab/ibrutinib regime, with the possibility of Lenalidomide – a drug I haven’t had before augmenting it. (Lenalidomide is a derivative of Thalidomide which I did have about 15 years ago.)

As I write this, I am having the pre-med of raspburicade which is to mitigate against Tumour Lysis, and then the chemo starts.

I am feeling a lot better in myself – it has been a difficult week, and I’m am very grateful for the support I have had from family and many friends. And So it is with more conviction that I can say “Onwards and Upwards” 🙂

2 Responses to “Friday 19 June… The wait is over!”

  1. Liz on 19 Jul 2019 at 3:20 pm #

    Such an exciting view!

    I’m so glad to hear that you have a bed though and
    I hope all goes well with the treatment.

    Any idea as to how long you’ll be in?

    Lots of love xxx

  2. Peter on 20 Jul 2019 at 11:17 am #

    Ah, it didn’t last!

    As far as I can tell, it seems to be working. The blood test results will (I hope!) confirm it!

    Love,

    Peter

    XX

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