Evening dear readers,
I should be writing this blog about how my first immunotherapy infusion went. Instead I'm writing about how I still haven't got that far.
I didn't get my first infusion last week as hoped.
We booked our train tickets and hotel room as the hospital suggested we would be better to spend the night before in London so we could be at the hospital in the morning ready for a raft of tests and then a plan to have the infusion later in the day.
Dad and I arrived at the hospital in the morning ready for a busy day. First I had to see the Dr so was duly weighed and waited in line. The Dr then had me sign further paperwork and explained that I would not be receiving the infusion that day. I was quite disappointed having been told this would be the case. He very fairly explained the trial process and that in order to go forward I needed to have blood tests, ECG's and finally CT scan. The blood tests to check my overall health for receiving the infusion, the ECG to check my heart was in good condition and the CT which would provide the baseline for the measurability of my cancer and whether or not it was responding to the drugs provided.
It was a very full on day and with my reduced mobility I found it tough going, I was glad to have my Dad with me not only for company but ultimately because I just purely could not have coped on my own. We travelled back later that same day having been told that they would contact us this week with regards a date for first infusion.
I spent all day in bed on Friday, my body was totally wiped out and in pain. I definitely paid for the full day of activity.
Monday morning came round and I received a phone call from the hospital, unfortunately they explained I wouldn't be receiving an infusion this week either. The reasons were that my haemoglobin levels were too low and the CT scan needed to be checked over by a different radiologist but I was reassured that this should only be a formality. I duly arranged a transfusion via Dr Oncologist (He's the best) for today and thought no more of it.
Yesterday I received a phone call from the hospital. The Dr on the phone was from the trial team and she had called to tell me that unfortunately after everything the radiologists had felt that my disease was non measurable. Meaning they couldn't track the effect of the drug. Meaning I get no trial. I was gobsmacked. Totally devastated. The only other real option for me was chemo. I know chemo will only buy me time and no where near as much as immunotherapy.
I felt like I had been handed a death sentence. All my hope removed in one short phone call.
I'm not ashamed to admit I cried. A lot. A good friend immediately recognised my distress and came to the house to be with me.
By the time she had arrived I had received another phone call from the hospital. In the words of the Dr a minor miracle had been achieved. Someone somewhere had put a word in for me and they WOULD be putting me on the trial. I just couldn't believe it. It seems an awfully arbitrary way to deal with people and their emotions.
I do understand the trials have to be rigorous in their testing I really do, I just feel that perhaps the reassurance used before hand could be left until the trial team are absolutely certain that the drug is going to be given. But then are they ever really sure...?
I have had my blood transfusion today as planned and have also heard from the hospital again and will be spending three days in London next week having some more tests and will finally (hopefully) receive the infusion on Wednesday. Excuse me if I reserve my excitement now until the cannula is actually in my arm.
A lesson learnt. Be warned trials are an emotional and physical rollercoaster and I haven't even started the drugs yet....
