So this is what happened.
A few weeks ago my feet were killing me. Just a few steps and I needed to stop. This has become a regular occurrence as my chemo has continued to accumulate in my system. Remember cumulative toxicity? So I decided that perhaps a blue badge would be a good idea. Application is through https://www.gov.uk/apply-blue-badge so I applied. You pay a tenner and the application is forwarded to the relevant authority, in my case Cornwall Council. The application should take 4 to 6 weeks depending on further investigation.
Yesterday Tricia contacted Cornwall Council. It transpired that the delay had occurred because I had not responded to their emails, probably because they were sending the emails to firstname.lastname@example.org whoever he is. Following some apologies and Tricia sending in a copy of my driving licence my application has now been duly processed without any medical assessment other than my original statement. My blue badge should be with me within 10 days. Yesterday my feet were killing me, they’re killing me now!
But, now this is the interesting bit, my feet are sometimes OK-ish. OK enough to chance a short walk. So on Thursday the 6th May, I propose a walk, which I mentioned in my last post. I’m hoping it’s a good feet day. http://iwkc.co.uk/w/205
Somehow, to me anyway, it seems a bit wrong that next week I’ll being applying via https://www.gov.uk/vehicle-tax for road tax for a bleddy great motorcycle. It definitely demonstrates the fluctuations in my health. One day walking is challenging the next day (perhaps not quite that dramatic a change) metaphorically speaking I'm cruising around on a Harley Davidson FXST Softail. Actually not metaphorically, actually, actually. ..... now that can’t be good English!
I’ve hunted high and low, there’s just nowhere to securely display a blue badge on a Harley. Nobody would believe me anyway.
Day to day the fluctuations in my health can be dramatic. On Thursday I pottered around all day to no great detriment, then yesterday afternoon I spent about 3½ hours in bed. Today I may be depressed and in bed with sore feet or cruising around on the, as yet untaxed bike, with a great big grin on my face, who knows?
What I do know is that since this whole sorry life episode began, I’ve not missed an appointment. I can’t say I’ve looked forward to them but attend them I must. I’m still a little shocked at the amount of NHS appointments missed and the gung-ho attitudes I have heard. Each missed appointment costs the NHS £160. At the moment I have 7 appointments scheduled. 2 chemos, 2 telephone consultant interviews, 2 blood tests and a scan. That’s £1,120 of potential lost appointments. Even if I put my health issues aside it’s incumbent for me, as it is for us all, to attend our appointments.
Of all the appointments I have, there are two that I particularly have an aversion to. The scans and the subsequent follow up consultant appointments. The scans identify the progress of my cancer and therefore, by extension, the efficacy of my treatment and my prognosis. The consultant appointment is the scary one. It’s when I get to hear the news.
The scan is uncomfortable. I have a cannula inserted into my inner elbow. Forget the titchy covid needle this needle is a big boy. It’s big because it’s the way the dye I need can be pumped into my body while I’m being scanned. Ouch! that thing hurts.
My next scan is the first appointment I’ve asked to change. I feel kind of guilty. I’m off to Yeovil for my daughter Vicky’s wedding next Saturday 1st May. Our plan is to travel up on the 30th April. The day after the wedding we're planning to travel to the edge of the Blackdown Hills in South Devon for a couple of days. It’s all booked up. Then of my 3 NHS letters I received yesterday I had one inviting me for a scan on Sunday 2nd May at 10.30am. The scan is scheduled to allow the results to be available to discuss with Dr Caroline Parnell, my consultant. So that appointment may need to change as well. Nothing like extending the agony. The consultant appointment is to plan my further treatment, it’s genuinely a very scary time.
These moments, when my scan results are discussed, are a bit like milestones along my path. A new chapter heading. Tricia is always beside me for these discussions. The message may not be all bad but they’re inevitably not all good either. But that’s to come.
In the meantime I’ve got a wedding to attend and write about, a mini holiday to enjoy, another Coffee Club on tour to facilitate, a walk that I need to finalise the planning and get done and, of course, double yellow lines to explore for parking purposes.
It’s all go or sleep here.