7am Friday 14th July 2023
It’s the waiting that’s killing me. It might just do that.
After a sleepless night may not be the most coherent time to hit the keyboard, this essay may get no further than our laptop. If it does, apologies if it is a bit down at times.
And it’s heaving down with rain which precludes a stress busting bike ride.
Two weeks on from my diagnosis of GI tract cancer with secondaries in my lymph nodes, I am waiting for a date for a CT colonoscopy. Until the scan, we don’t know what we are facing. I have been told that there is no date yet and there is also no date for when there will be a date.
Over the years I have (probably) bored the pants off my children, junior staff, and various trainees with one of my many mantras, I like to think sensible advice based on years of experience! which is; if you don’t hear back from someone, get in touch. You never know, a mail may have gone astray, someone may be sick or on holiday. The World is a busy place and most of us are relatively unimportant to most of the rest of us. So, don’t wait for an answer that may not come, ask again. I have chased for this scan, with my cancer nurses, directly with the radiology department and have enlisted PALS – the Patient Advisory Liaison Service. Everyone I know connected to the NHS are telling me to be ‘the pain in the arse patient’ – well, with potential bowel cancer, I may be that soon. PALS said, ‘don’t drop the ball.’ I probably won’t chain myself to the front of the hospital, mainly because I generally can’t go for more than a couple of hours without a wee.
I am not in control of this but will do what I can to get action.
Thursday 20th July, 10am. Sitting in our sunny garden.
So, what has happened since last Friday’s rainswept and over-tired dawn?
At exactly 9am on Friday, my phone rings and it is PALS. ‘I’ve been in touch with radiology and your scan is booked for 26th July; this is the earliest date they could do. You were not triaged until yesterday.’ 9 days to triage a patient with primary and secondary cancer seems a long time. What I will never know is, was this the normal timescale for getting a date? Was the intervention of PALS and the change from absolutely no information to booked slot in less than 12 hours a co-incidence or had my urgent referral for this scan got buried under a metaphorical digital pile of paper on some overloaded persons desk and this was found when PALS intervened on my behalf?
Objectively, getting a date for a scan does not cure my cancer. It really makes no difference. What will cure it (is cure even the right word?) is knowing what we are dealing with and getting on with whatever surgery, chemo and radio therapies are appropriate as soon as possible. But humans really don’t live objectively. We are subject to unreliable and subjective emotions; thank goodness. And I feel so much better for having this date.
I have spoken with the Colorectal nurses, and we have an outline timescale for next steps. It does feel like we are on track again. I am sleeping better, 3am walks along the seafront and conversations with police officers (gosh, they look so young these days!) are less frequent.
Next week is a meeting with a consultant cardiologist to hear the results of my echocardiogram. The Colorectal nurse team and I have agreed that I will instruct him to discharge me as plainly there is nothing wrong with my heart. We can tick that one off.
I also have the CTC scan. The prep kit for this has arrived and I have a couple of days of living on scrambled eggs and white toast prior to this. Apparently, they are going to inflate me, I have images of being some kind of balloon animal and possibly floating over Taunton like the Trump baby blimp. And after that?
In the meantime, we have booked a room (a junior suite, no less) in a posh hotel in the centre of Wells, Somerset’s small and rather beautiful cathedral city, for this weekend. Wells has swans at the Bishop’s Palace that ring bells for their lunch, two hardware shops, and a Saturday market. On our way home we will go and watch some birds at Ham Walls. We have visited Wells many times and have often said that we should stay there for a couple of days. Now seems a good time.
I am also back on my bike again and several dry mornings have got me out for an hour and around 15 miles of moderate spinning. The exercise is great for my head and may keep me in reasonable shape until the medical interventions start. The nurses say that being fit will really help, which I am hearing as an instruction to ride my bike; but you know that listening accurately is not necessarily one of my strengths!
I think this will do for the moment. Sitting in the garden with the cat asleep beside me and a weekend mooching around a historic city ahead, I know, both objectively and subjectively that I am lucky.
(20th July 2023)
