Archive for October, 2019

The final onwards and upwards…

To all friends, family and avid readers of ‘Peter’s Hospital Diary’,

At 1am on 18th October, my Dad took his final breath as the National Anthem played on the BBC World Service. Typically, in true Dad-style he went out fighting…

Optimistic and stubborn to the end, he received his last round of radiotherapy just that morning, assuring us we still had Plans D, E and F to go!

It was unexpected how quickly this came about but it was a calm and peaceful end to his battle. As he said in his final hours, ‘no one can say I haven’t gone out fighting’.

We find solace in the fact that he was surrounded by friends, family and wonderful hospital staff; knowing in his last moment just how much he was loved.

We are all so proud of the unwavering fight he gave and his dignified acceptance and tranquility.

Funeral preparations are underway, following his strict instructions, and we will be sharing details with friends and family after the weekend.

In the words of my Dad; ‘Onwards and Upwards!’.

All our love, Peter’s family.

We’d love to hear your thoughts, memories and anecdotes, or if you would like further information please email onwardsandupwards@swanmore.net

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Thursday 10th October … just one more thing!

Just as I thought I was starting to feel better, I noticed a rash on my leg, which the doctors think might be an outbreak of shingles! That would explain why today is a bit of a lethargic day! Still, I’m in the right place as I’m having a large dose of IV acyclovir (which I normally take prophylacticly as a tablet) over 5 days to knock it on the head!

In other news, my WBC is down to 8, which is good, not so good is that my platelets and neutrophils are down too – so a platelet transfusion later (I really am overdrawn at the blood bank!) and maybe GCSF to boost the neutrophils.

I stopped the Ibrutinib yesterday and start Lanlidomide tomorrow. As I mentioned in an earlier post, this is a maintenance therapy to keep everything controlled without large doses of cytarabine.

I went for a little walk yesterday, including a flight of stairs. I managed OK, but felt a bit wiped out afterwards – it’s frightening how quickly loss of fitness and muscle tone starts.

I expect to be in hospital for a while yet, but provided the Lanlidomide lives up to its promise, it is Oneards and Upwards! 🙂

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Tuesday 8th October… Still in hospital!

It’s been a week since I last posted – a mixed week with good and not so good days!

I finished the chemo a week ago and the WBC count is falling nicely, but the side effects have been difficult – loss of appetite, sore and drymouth and general malaise. Some days have been better than others, although as time goes on I am feeling better. I’m certainly sleeping better for the last few days.

The dry mouth and throat has made swallowing some of my meds difficult, although where possible they have been switched to soluble versions. The PICC line has been good making IV infusions and taking blood much easier.

My appetite is returning slowly (I was threatened with a Naso/gastric tube!) but mainly soups and soft food with some high calorie supplements (Scandishake and Fortijuice) which has kept my weight up, although I do have a bit of muscle wastage.

The next question really is the maintenance therapy and the option being discussed at the moment is Lanlidomide – I think I have mentioned that it is a Thalidomide derivative and can boost my immune system to get my donor lymphocytes working again. Meanwhile the transplant team here are in touch with the Antony Nolan Trust to try and yes k down my donor, a nd if possible harvest some more lymphocytes.

And hovering in the background is the possibility of CAR-T cell therapy, although that is only just being developed for Mantle cell lymphoma and there are currently no trials planned. The team know I am a volunteer! 🙂

I’m not sure how long I’ll stay in hospital – looking after myself might be a bit challenging at the moment, simply because I am a bit weak, but once my strength returns I should be OK!

So it is a case of Onwards and Upwards – just a bit more slowly than I would like!

(And thank you for the comments on the last two posts – I have now replied to them!)

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