I went to the Hospital today to get my next cycle of tablets and see the consultant for an update. I forgot that I had also arranged to have Pentamidine which is the replacement for the co-trimoxazole their both Septring, but the co-trimoxazole is one of the tablets that possibly caused the rash I had. So Pentamidine is it’s replacement given via a nebuliser rather than tablet form.
First the blood test was taken. I don’t normally have any problems with this, but for some reason they couldn’t get any blood from my right arm and had to use the left instead. Two needles and two bits if very tacky tape to rip off my hairy arms – ouch!
Then another wait and in to see Dr Lee he gave me an update. I’m doing really well and the Myeloma is responding well to the treatment. I asked more about timescales and when to expect the bone marrow transplant. Below is rough guide as to when things will be happening:
|Next 9 weeks||Continue the 3 week cycles. 3 more to go.|
|Mid March||Two week break of all treatment for marrow to normalise without chemicals.|
|April/May||Start of stem cell treatment. Extract bone marrow. |
Dates depend on Liverpool hospital
|Analogous Stem Cell Transplant|
|4 Weeks||isolation in Liverpool Hospital|
|8 Weeks||Recovery period at home.|
|Celebrate with a glass of wine!!!|
The above dates are only estimates but at least I have some kind of expectations now.
Meanwhile back at the hospital…
Dr Lee wrote the usual long prescriptions out and prior to going to have the nebuliser I told them I would drop them off at pharmacy so they could get started on putting it all together while I was on the nebuliser. The pharmacy said it would take about 30 mins - ‘not a problem’ I told them as I’m going on the nebuliser and would pop back later on.
Off I went back to the Oncology unit. I let them know I was back and one of the nurses said she would go and see where it was up to. So I waited …. and waited … and waited. A couple of nurses said they hadn’t forgotten about me and offered drinks. They are really good at looking after the patients and always treat you well. I never have to give my name, they remember everyone by their first names. It was finally about 3/4 of an hour to an hour when Jane (a nurse) came out and apologised explaining that the Pentamidine needed to be mixed up from and doesn’t come prepared. It was going to take another hour to get it ready. I could either wait or come back tomorrow. I decided to go back tomorrow, rather than wait another hour.
Back to the Pharmacy to pick up my prescription. They apologised and said that they are still in the middle of putting it together and it would be a few minutes. ‘no problem, I will go and get a drink and come back later’ – off to the canteen for a hot drink (and a cake but don’t tell Charito). Finished the drink and went back. Guess what? – Yep they apologised and said that they still hadn’t finished it and it would be a few minutes. This time I just waited in the seating area, surely it could be that much longer. Fortunately it was only about 10 minutes. So from the original estimate of 30 minutes it turned out to be about two and half hours. From the time I said to Oncology I would come back tomorrow rather than wait the extra hour to the time I finally got my prescription, was just over an hour. Although that would only have been the start of the nebuliser. I’m not sure how long it takes to have the Pentamidine. Anyway from all the time scales and waiting and apologies I was in the hospital at about 11:30am and left about 2:30pm. Most of that time was waiting for one person or department.
I don’t mind so much as having the knowledge that the treatment is working and going well is more important to me. I’m really pleased with how it has been going. The last cycle was more manageable without the rash and I’m hoping the next three go as smoothly.
They have increased the dosage of Thalidomide and daily basis again. The Pentamidine has possible side effects (no surprise there). It could cause breathing difficulty after having it or cause a cough. I will have to wait and see.
Chemo day again tomorrow along with the Dexamethazone so lots of tablets tomorrow morning. Just hope I don’t feel too sick while having Pentamidine all mixed up together with the extra Thalidomide.