ICON9 Trial - Randomised - Start today - 2 February 2021

It was a long morning and then it turned into a long afternoon.

I made the Macmillan Centre by bike at 8:36 for bloods before a 9:15 appointment. I am not proud of this, but most days I only get up around 9. It certainly makes an early start somewhat painful.

Vaccine Thursday went well I hope. Arm muscle felt as if badly strained for a couple of days and I didn't have much oomph over the weekend but things are improving. I did an hour on the bike yesterday including some hills (Wildwood Road was quite nice), but sadly this was mostly as an alternative to the C25K - my knees are giving me jip. This is a bit disappointing and slightly demoralising after the flying (ha!) start. I thought I had gotten away with it until session 3, when ankles and knees felt really stiff for both the walking and the running. It's possible that it isn't so much the C25K as the Nordic Walking I did in between sessions 2 and 3, or the increased cycling, or all three. In any case, the running must be the highest impact and when session 4 was just as bad, I thought I'd better give it a break. Any advice from similarly-affected C25Kers gratefully received.

On the plus side, at home my blood pressure does seem to be lower and more consistently so. But there was still the hurdle of demonstrating it on the hospital's machine. Very understanding Clinical Trial nurse on duty for it. She had agreed that I should bring the home BP monitor with me to try alongside the hospital's one. As I am incapable of travelling light, this was just a matter of adding another heavy item to the bike bags - two locks, a tablet and keyboard, Kindle, water bottle, usual handbag affair - I think there must be a way of reading Kindle stuff on the tablet. This could save me 330g - I weighed it.

BP test was interesting - got 128 on my mini home monitor, then 143 on the hospital's - I don't think this necessarily means that the home one is defective - I could feel the white coat syndrome kicking in as the hospital cuff went on. After a minute or two's attempt at relaxing, which doesn't always work, the BP came down to 136, and with my Excel spreadsheet of reduced home readings on show, I was good for the trial - if the blood results allowed ...

A bit of a wait for the registrar but yes, the bloods were good. Neutrophils up from 0.98 a fortnight ago to 3.39 today. Lymphocytes down but they don't seem to be so worried about them. Ran through all the scary potential side effects of the two trial treatments and signed the consent form. Now I'm for it. 

Still not finished though - back to the Trial Practitioner to pee in a pot, have extra bloods taken, fill in a questionnaire on paper, and answer questions to update them about residual symptoms post-chemo. 

I have been randomised into the olaparib only arm of the trial. I think this is a relief. It saves me from the element that would be most likely to go for  my blood pressure and means I am getting what is already an established maintenance treatment. I see it as roughly what I would get anyway but with extra attention and a contribution to the sum of human knowledge. It does also mean I could be missing out on what might be a good double-header treatment, but there's no guarantee of that, and there would be a risk of double-header side effects too. So, I'm content.

I have a little card which I have stashed in my phone case with my chemo card and my Covid vaccine card and my emergency five-pound note. 

But they are still not finished with me - am waiting in the Macmillan Living Room, where they are now also running a vaccine clinic. The pharmacist has to talk to me by phone before I can go to collect the drugs from the special trials pharmacy in the main hospital building. I have to start the drugs soon after the blood tests etc, so no question of going away and collecting them another day. That's a thing - I had hoped to start the pills on my own timescale and thus give myself another week off to recover further, but no. Anyway, I've been waiting for the pharmacist for a couple of hours now, so am going to be a pain and chase!

14:44 - Chase was needed. Discussion with pharmacist done - no grapefruit! But there's already no grapefruit! for amlodipine. Trek to trials pharmacy in main building done - 4 bottles of something rattly to last a month. Loins girded for going back to bike shed and unlocking trusty steed.

15:36 - home - that's an improvement on last time when I think it took an hour.

These are the contents of one bottle - a week's worth - two in the morning and two in the evening at just the right time with one glass of water - trial protocol. They look a bit home made - I guess they don't want patient reaction to be psychologically affected by giving them a colour. As it is they look a bit like the Senokot my dad used to take. The little plastic depth charges are dessicant - shall have to be careful not to down those when I can't find my reading glasses in the morning.