Many of my recent posts start with something like ‘well here I am on the train again’.
Which is where I find myself once more. The journey to UCLH in London has become a big part of the day taking several hours there and back.
And of course not forgetting we are in the middle of a heatwave, although it is quite pleasant this morning with the aircon whirling away.
I am suffering a bit this morning, my back is giving me more pain than usual. Not sure why, I don’t think I over did it yesterday.
One of the things I want to ask about today is to get a better understanding of the diagnostic of my back and what ‘multiple sclerotic bone metastases‘ really means. Is that something that immunotherapy will treat or will I always have it now?
Things are going well, we arrived at UCLH just after 8am, checked in and went for a blood test.
By the time that was done my name was on the screen and we made our way to the clinic reception.
I was quickly seen by Danny our trial nurse who did my observations, my blood pressure was very good 119/71. Both Barbara and Danny commented on how good it was.
I am obviously relaxed this morning 😁.
My weight was taken but we won’t go into that 😉.
And I need to provide a urine sample but we won’t go into that either😉.
1015am and we finally got to see Dr Linch. He asked about my health and gave me a quick check over.
We discussed the meaning of ‘multiple sclerotic bone metastases‘ and he explained that with prostate cancer the affected area of the bone increases growth and it maybe this that is causing me some back pain.
He said that the immunotherapy should deal with this as well although it would be hard to quantify as healing bone would look the same in a bone scan.
I showed him a couple of spots I have on my shoulder and neck and he thought I should go and see my GP and get a dermatology appointment to get them looked at. He said it would be ok to have them treated while on the trial.
He said I should be at less risk of skin cancer as the immunotherapy should work on that as well.
He also gave me a prescription for Co-codamol to provide some extra pain relief for my back.
Then as something new we had to see a pharmacy nurse.
More waiting 🤔.
I need my bacon sandwich!
And then a funny thing happened.
A nurse came out and quietly called out a name which sounded very much like mine. We followed her into a room where a slightly surreal conversation followed!
The doctor introduced himself as a breast surgeon and asked if we had been to the clinic before.
All the time he was looking at Barbara.
He looked confused!
We did a name check.
He was expecting a Lisa ####field.
We laughed, we were in the wrong room and we made a hasty exit.
Back to waiting for the pharmacy nurse.
Once we had seen the pharmacy nurse we headed out for a very late breakfast and a walk to Regents Park.
Then it was back to the treament floor and time to do another jigsaw while we wait.
Then 4.20pm and I am finally connected up to the drip and the first drug is starting to go in. Thats the Nivolumab.
Once the treatment actually started everything went smoothly.
I did fall asleep at one point💤💤💤.
Same as last time, I had the Nivolumab then 30 minutes rest and then the Ipilimumab.
Soon it was time to head home, I was shattered, we had been at the hospital for 10 hours and by time we got home we had been out for over 12 hours.
Still it’s all worth it.
3 weeks now until treatment 3.