Janet's blog

There's been a lot to get used to since the last post and I haven't been making a very good fist of it. Firstly: a disappointing week after the last treatment. Was expecting/hoping for it to be as trouble free as the last one, but contrariwise, I felt a bit generally crap. Nausea back, plus general weariness - in fact I started wondering if the previous treatment had been a placebo it had done so little interfering with everyday life. We went to Devon for a few days and I hardly went out - admittedly the daylight was fleeting and the weather wasn't great. When we got back, I did a bit of pacing the nearby streets looking for a free lamp post charge point for the car and felt not only breathless coming back up a small hill, but unwell too. Then in the few days before clinic day, although I felt a bit better 'in myself' I started having a few palpitations and I settled in to expecting my haemoglobin to have dropped again. Secondly: Just as I was about to get on my bik...

Didn't get in quite as early as asked. Left late and traffic was terrible - looks like the people's Plan B has been to get in their cars. Hardly any queue in phlebotomy and FBC sample was whisked off for speedy analysis. Bit of a wait during which I used up too much phone battery deleting messages which left me a bit short of juice later, when I could have done with plenty to record the great excitement! Anyway, eventually blood results came back, Hb still 93 sadly (but I had measured that physiologically going up North Hill to Highgate very slowly and noisily on the way in), neutrophils 1.56 so back on track. Had to be signed off by doc and pharmacist before the EP0057 could start to be made up and olaparib prepared, so another long day in prospect. All went pretty predictably - cold day and my veins had retreated, so it took four attempts to get a cannula in - the final one done by the go-to healthcare assistant they turn to when others have failed. A soak in hot water, pumme...

 Cycled in and out: ever-increasing effort and self-belief required. Steam engine huffing and puffing continues with ever-reduced transmission to legs. Still, did it. Was hoping B12 injection (red and given yesterday by GP's nurse) would give miraculous rebound of energy and millions of new red blood cells, but no. Huge queue for phlebotomy, moving very slowly. When I texted the trial team, the research nurse said to come up and she would take my bloods herself. That done, I could pass on the good news that the last fortnight has been better - perkier, more energetic and able to motivate self and get some things done, don't remember any low-level olaparib nausea episodes. Guts still unreliable and anti-social but less grumbling and discomfort. I don't know if the change to Lactofree milk is paying off or if it's just the body getting used to the new regime. I guess I'll have to try slowly reintroducing real milk and seeing what happens - maybe after Christmas. I...

 First scan since starting this new treatment and in the new building - see 2 March 2021 and 2 September 2020 - now known as the Grafton Way building. It's on Grafton Way - my favourite joke comes to mind again - what's brown and sticky? See next post for answer.  Some nice art to look at while drinking my water in echoey quiet under the high atrium - only 500ml this time, which is a relief. I guess it's a spanking new CT machine - pretty quiet and very little noticeable whizzing around inside the hoop/torus?? This was an early start - cycled in for 8:15 am with no breakfast because of the scan so I had promised myself a breakfast treat before pedalling home. But there was no sushi and miso soup to be had - not at the recommended Japanese place on Warren Street, and not at Wasabi or Itsu or at the Japanese Kitchen on Tottenham Court Road - all closed until elevenses. I could have had a pastry option almost anywhere but yearned for savoury. Had to make do (another first worl...

 Cycled in. Hills are getting harder. This had also been evident in Devon, with uphill walking accompanied by much panting. I wasn't able to write much on the day as the Centre WiFi was largely absent. Catching up  on 9 December and can't remember much about this one, except infusion got done. Going home in the car was different though as we had gone electric the day before - zing zing. Christopher had only done one test drive in the new second-hand machine (to be known as the electric vehicle or ev - Evie?). Making it go is easy - bit like driving a smooth dodgem car, but the dashboard resembles a jumbo jet's with lights and displays and buttons and dials galore, most of which we haven't looked up in the manual yet. I think I have counted five different modes of braking which certainly got us going. Still, it was a problem-free trip to and from our usual collection point, which is just outside the Congestion Charge Zone. Once we get our paperwork done and pay GBP10 to ...