Well it’s that time of the week again, it’s a Wednesday and we are heading to London and the hospital.
I am not expecting to have treatment today, the visit is mostly for a blood test to see how my liver is doing.
I hope it is well on the mend after the steroids but there was talk of keeping me on them albeit a lower dose.
The tube was very busy this morning but we managed to get seats and everything was running on time.
07.52 and we are sat waiting for a blood test. I have extra vials this morning as I am providing samples for the UK Biobank this morning.
The blood test wasn’t straight forward as she found it difficult to find vein in my arm so for the first time she took blood from my hand. I do feel like my veins are disappearing or moving further from the surface of my arms.
Blood test done it was off to see the research nurses for my observations, my blood pressure was very good and my weight was 204.5kg, so down slightly from last week.
Today we saw new doctor, Dr Grist, she came with 2 assistants, 1 student doctor who was going to do a patient case study and 1 researcher.
We had a good talk with the doctor and went through a few things.
On the negative side my PSA has risen again and is now at 23. Both Dr Grist and Linch are not too worried about this and will wait until the next scan to see if that shows anything.
We discussed the water tablets I had started on and she thought they were ok to continue with although later in the day that decision was reversed and I will stop taking them for now.
We also talked about some of my other aches and pains, she also gave me a thorough examination and declared all was ok.
She didn’t have my blood test results so Barbara and I went to Patisserie Valerie for a breakfast treat. Hopefully by the time we get back the blood test results will be back.
HOLD THE FRONT PAGE!!!!
On returning to the hospital we got some very good news and that was that my liver enzyme reading had come down to normal levels, it was now 47, it needed to be below 50.
And even better news was that I was going to have treatment today!
I was surprised but so pleased, l felt like things were slipping a little too much.
What it did mean mean was though that we were now here for the day.
So we popped out to pick up some lunch and went to the 2nd floor where the treatment suite is.
It felt like we hadn’t been there in ages, in reality it was 9 weeks.
I think Barbara was also pleased, she was pleased that I was having treatment but really pleased to have some time to do a jigsaw. 😉
She chose one with 1000 pieces which we never quite managed to finish.
While I was waiting clarification about treatment earlier in the day we had a good chat with Kelly the medical student who is going to follow my progress and write a case study on me which she will present in April.
I look forward to working with her.
About 3.15pm one of the Chemo nurses came over to fit my cannula and following the trend from the morning it did not go smoothly.
She tried to put it into a vein on my right wrist, she got in in but I don’t think it went into the vein as it should, some blood came out and put down the tube but it soon stopped.
She tried to adjust it so that they blood and therefore the immunotherapy flowed freely.
This was very painful and had me squirming in my chair. Barbara offered me a hand to hold which I took.
She tried a couple of times to adjust it but I think my squirming put her off so eventually to took it out.
It’s amazing that something so fine could caused so much pain going in, I guess the wrist is a very sensitive area.
The nurse asked one of her colleagues to have a go and this time it was success, he managed to get it into the top of my hand.
A few minutes later I was all hooked up and before long the Nivolumab ( I was now on mono-therapy) was flowing.
Treatment took an hour or so and continued with no further issues.
We left the hospital at about 5.30pm and I was feeling a little done in.
We were heading to the tube but I needed an energy boost and so we popped into Sainsbury’s where I bought a bottle of Lucozade, something I never normally buy but I needed that boost.
When we got to the tube the gates were closed with a mass of people, not sure why as we couldn’t here the announcement. So we decided to take a taxi home, it would be expensive but I was not feeling well and couldn’t face waiting on the tube and a packed subway.
We finally got home at about 7.30pm, more than 12 hours after we left home in the morning.
I was shattered as was Barbara, it was an emotional and busy day for us both. I was also suffering from muscular chest pains I think from the tension earlier in the day.
It was a long day but I was so pleased to be back on treatment, I hope that now I am on mono-therapy I will not suffer from side effects as much and we can get into a routine of going to the hospital every 4 weeks.
In the meantime I am back in 2 weeks for a blood test to check that my liver is still OK.