A week of steroids at Brighton

Friday 9th March 2007

Took a little walk to the village to buy flowers and the newspaper and get some fresh air. Then caught up with my log before Tina came to drive me to the RSCH for my 11.30am appointment. All done by 1.15pm and away with large bag of needles, syringes and swabs, etc. for self injecting my Campath for the next 3 weeks – but forgot to ask for the surgical gloves! My weight to days is 79kgs. My blood counts are - Wbc: 4.30; Hbn: 9.4; Plt: 178; Neut: 4.20. Fairly restful afternoon, after doing my Campath, despite several phone calls and text messages!! Tried a Guinness before dinner to join Tina with her G & T, but no good. Taste was gone – sadly! Slept on the settee from 10pm to gone midnight, forgot my Aciclovir again! My legs are up again with fluid retention!

Breakfast: Orange juice; yoghurt, cereal, mango, honey; water.
Lunch: Lentil and ham soup; apricot fool.
Dinner: Roasted vegetables - peppers, courgettes, onions, celery(good) and couscous; bread and butter pudding (surprisingly nice!).

Thursday 8th March 2007

I have decided to take the Metoclopramide at least every morning before breakfast as a nausea preventative - my stomach is not feeling too special nowadays. However, the fluid retention in my legs has ceased, so I have stopped the Furosimide as of today – good news!
Took the 10am bus to Brighton as I wanted to see Dr Paul Hill whilst he was having his weekly RSCH clinic – if only for a catch-up chat. He checked me over and found a very small gland “up” in my right arm pit, otherwise I was ok. Discussed the options re the Pentamidine “refresher” next Tuesday or reverting to Septrin and Ciprofloxacin depending on my white cell and neutrophil counts. He would check the protocol. I then went downtown shopping, having a sparse lunch in the sun in Churchill Square, more to the benefit of the pigeons as I couldn’t manage the bread! Back to the RSCH for 2.30pm and meeting the delightful and very efficient snr. Charge Nurse Laura Pena (from Valladolid!) I was on my Methylpred. by 3pm and all finished at 4.15pm. My weight today – 79.5kgs. My blood results I will get tomorrow, but I will record here:-
Wbc: 4.30; Hbn: 9.1; Plt: 165; Neut: 4.20
Picked up today by Cath and home at 5.30pm. Phone calls either side of dinner, including one cancelling the rugby at Twickenham with Richard. It just does not make sense trying to do something like that – however I might want to go – when I know I would not be up to the journey or the sitting around in the cold. A shame, but it is the right decision. I will have to watch it on TV instead. Bed at 9pm again and slept well.

Breakfast: Mango and passion fruit juice; yoghurt, cereal, mango, honey; toast, marmalade; green tea with lemon.
Lunch: Ham sandwiches – only managed the ham and fed the pigeons with the bread!; apricot fool.; banana.
Dinner: Avocado pear; Salmon fillet (just about managed) couscous with sun dried tomatoes, asparagus and peas (couldn’t eat it all); banana.

Wednesday 7th March 2007

Slept well through the night despite my long evening doze. 10.30 appointment at RSCH and the Methylpred was started at 11.10am. My weight today is 79kgs and my blood counts are- Wbc: 5.80; Hbn: 9.5; Plt: 178; Neut: 5.70. All going up – a bit of a surprise! But my legs are definitely down - and keeping down all day. Self injected my Campath after lunch.

I had asked Santa to check on the delivery of the Campath to RSCH from Kings. By afternoon Santa had no joy with her own pharmacy, rang some numbers I gave her for Kings and found the haematology pharmacist, who was sitting on it waiting for someone to tell her what to do with it!! Anyway it will be with me by courier on Monday. Feeling tired by 5pm so a bit of a lie down on the settee; also feeling funny in the stomach although ok in myself – if that makes any sense. Bed at 9pm and slept! Managed to wake up at 2.25pm for my late evening Corsodyl, Nystatin and Aciclovir! Then again at 5.45am for my Itroconozole. Ugh!

Breakfast: Yoghurt, cereal, mango, honey; toast, marmalade; green tea with lemon.
Lunch: Chilli bean soup with toast croutons; ham sandwiches – only half; yoghurt, mango and ginger.
Dinner: Avocado pear; pork fillet (just about managed) couscous with sun dried tomatoes, sugarsnap peas (couldn’t eat it all); lemon cake (sort of ok!).

Tuesday 6th March 2007

Had a good breakfast with a Metoclopramide tablet to be on the safe side. Spent the morning on emails, etc. as my RSCH appointment was at 1.30pm. I am given my blood count results for yesterday. They are - Wbc: 0.8; Hbn: 8.6; Plt: 138; Neut: 0.8. – which makes me neutropenic already! I have another blood sample taken as they don’t seem right and the results are very different. So I have yet another sample taken to be sure. These come out very similar to the 2nd set and are - Wbc: 3.8; Hbn: 9.0; Plt: 171; Neut: 3.70. So I am not neutropenic after all !! My weight today is 79.5kgs.

No hot chocolate today – didn’t feel I could take it. Involuntary hiccoughs started just like the last time! Slept on the settee from 8pm to 10.45pm.

Breakfast: Yoghurt, cereal, banana, honey; toast, marmalade; green tea with lemon.
Lunch: Ham sandwiches; yoghurt, honey and ginger; banana.
Dinner: Avocado pear; smoked haddock, wild rice, tomatoes, peas and beans; yoghurt, honey and ginger.

Monday 5th March 2007

Today was the start of my Methylprednisolone treatment at the RSCH at Brighton. We left home at 8.05am and had a much easier drive than I expected. Found the special Cancer Car Park right by the hospital and were parked in at 8.35am. It costs £1 per day – really good. We were met in the nice new – and quiet - Haemotology Unit by ch/nurse Santa, who looked after me very well throughout the morning. A slight delay while she found a doctor to prescribe the Methylprednisolone, but blood samples taken anyway, although I didn’t get the results until Tuesday. Also booked my appointment times for the rest of the week, which vary every day, plus a time and day for the Pentamidine nebuliser in just over a week’s time. My weight today is 80.0kgs.

So 1 hour of Methylpred. started about 10.30am – I get 2 grams in 100 grams of saline solution - followed by a 15 minute flush and we were away just before midday. Felt tired as the drip was delivering and had a little doze I think. Once home, Tina was soon away to work and I self injected my Campath. After lunch I sat in the conservatory with the laptop, feeling slightly tired, but otherwise so obvious effects. However, my afternoon hot chocolate didn’t go down so well as usual and after taking my Itroconozole I felt slightly nauseous. About 5.30pm I lay on the settee and slept. Tina came come from work about 6.15pm and I still slept on until 8pm. My stomach felt funny, I was not hungry, so no dinner. At 10.30pm after taking my Corsodyl mouthwash and Nystatin I had a sip of water, felt decidedly nauseous and took a Metoclopramide tablet. I slept well.

Breakfast: Orange juice; yoghurt, cereal, kiwi fruit, banana, honey; hot chocolate.
Lunch: Chilli bean soup; ham sandwich; banana.
Dinner: Nothing