I'm sat alone in the house (a rarity at the weekend!) with the drizzle falling outside, the TV coronation coverage on mute, and the Junior Boys gently blasting their warm, weird sounds from my hi fi speakers, occasionally startling our curled-up cat Wilbur out of his slumber.
I feel pretty tired. That might be because I enjoyed a 3.5 mile run early this morning before taking Macy to work and doing the weekly Aldi shop. But it's also probably due to three days of hospital appointments and all that entailed.
Wednesday was my birthday, which I already knew wasn't going to be the normal affair of working, popping to the cricket, or hosting a BBQ for friends which we've done every year (bar Covid) on the first May Bank Holiday weekend for the past decade or two. With my oncology appointment at 1.25pm, Lisa went to work in the morning and I went for a walk around Chasewater with my friend Paul who was taking a break from an intense work assignment. It was lovely to chat in the sun and, on the way home, to pick up a 40-year-old U2 record I'd ordered from Vinted and buy my dad a birthday card (I was born the day before his 24th birthday!).
Lisa left work and we drove to Burton Hospital, via a drive-thru Costa lunch which we ate in the car in the side streets outside the hospital, before we settled down in Outpatients Waiting Area A. While we waited, Sharon, the Colorectal Cancer Navigor I mentioned in my last post, spotted us and came and chatted, which was lovely.
Our session with the oncologist was, as expected from our two previous diagnosis appointments, full on. We looked at my scans again in detail and she explained how, though my treatment pathway is still not clear-cut due to the markers on my spine, she was keen to get me started asap. Initially, the earliest this could happen was 22 May when I'd get my PICC (peripherally inserted central catheter) line fitted and have my first chemotherapy session. However, as we chatted, the nurses learnt that a cancellation meant I could get my line installed the next day, allowing chemo to start a week earlier on 15 May. The sad inference was that the cancellation wasn't for positive reasons and my heart sank a little for that person, and their loved ones. I was pleased the fitting had been brought forward, though as I was told the list of possible chemo side affects and signed my consent forms, it also felt a bit overwhelming.
We came home and switched back into birthday mode as we ordered pizza and later opened presents with the kids and their partners. Normality fully resumed as we watched our team West Ham lose 3-0 to Man City. I went to bed grateful but also worried about the PICC line insertion the following morning. With previous procedures I'd had a few days to mentally prepare, but this one had been sprung on me. I'm fairly squeamish and the thought of having a line inserted from my elbow, up my arm and into my chest didn't appeal. Moreso, this felt like the start of my treatment journey in earnest - no longer imagined but real. Sitting in bed, I turned to one of the short mindfulness meditations I've got on a self-compiled Spotify playlist which gently encouraged me to admit, hold and face my fears. I realised my biggest issue was being afraid of being afraid. Once I admitted and accepted my fear, it lessened its power and I could instead allow the fear to help and guide me, rather than trying to avoid it.
So, as we walked into the chemo day unit on Thursday morning, I told the surgeon who was about to insert my PICC line that I was nervous. We went into the side room , where he was assisted by a student training to do his job, and outlined how the line would be inserted, along with the risks involved which were outweighed by the fact that my chemo drugs and blood samples could be administered directly into, or from, the line rather than via fresh injections every time.
Lisa watched, with a slightly unnerving fascination, from the bedside as the surgeon chose the best vein in my right arm and inserted a guide wire. The only physical discomfort was in the initial finding of the opening to the vein, after which I had a local anaesthetic. An old-school tape measure was used to decide I needed a 43-cm length of tubing to reach the larger vein by my heart, and the line was cut to order (the leftover rubber line is picture below). As it was inserted, an ECG monitor checked it was going in the right direction and, after a brief detour towards my jaw was corrected, the line was in place and a cannula fixed to the end poking out just above my elbow crease. The whole thing took about 20 minutes following which we went downstairs for a quick x-ray to confirm it was ideally situated, which it was. Apart from a light ache in my arm due to the insertion, I can't feel a thing!
We then sat down in the chemo day unit to have some bloods taken via my new PICC line. I had a cup of tea and biscuits as the nurse did this. In the midst of the activity, there was a sense of peace and care in the room as several patients arrived for their treatment and chatted with the nurses, clearly a routine part of their regular lifestyle. I'll be visiting once a fortnight for my chemo infusion before leaving with a belt-worn pump to continue a slow release of further medication for two days at home. In the inbetween weeks, hopefully locally-based nurses will be able to disconnect the pump, flush the line and take my bloods which means I shouldn't have to travel to Burton for these. We found out about this LAP (Local Access Point) service from our matron friend Sam, who was really helpful after a frustrating enquiry to our GP's didn't yield much result.
It was good to relax at home that afternoon and reflect that my fears about the PICC line insertion were unfounded. The following morning, yesterday, we headed to Derby Hospital for a bone scan in their Nuclear Medicine department. I received my paperwork on arrival which included scribelled notes that confirmed that Sharon had persuaded them to bring the scan forward to this week after an initial date of 17 May. I then had a dye injected which, the nurse explained, would take around two hours to soak into my bone cells which, apparently, naturally regenerate in that time allowing the dye to get among them. During the wait, we popped to see our friends Jon and Helen, who live a couple of miles from the hospital, and had a good, if slightly rushed, catch up before returning for the scan. As we left, it felt like we'd slightly info-dumped on them and not had time, as we normally would, to find out what's going on in their lives. Having conversations that almost solely revolve around us at the moment can feel selfish but, I guess, are necessary - although it hopefully won't last forever. Please call us out on it when you've had enough!
The bone scan involved a square x-ray plate, shaped like a large office ceiling tile, hovering silently over my nose as I lay (think of the scene in Alien where the monster gets right up close to Sigourney Weaver's face), before slowly gliding down the rest of my body. I was virtually asleep by the time it finished 18 minutes later. After the scan we popped to Aldi to get some lunch and then stopped at the canal at Fradley for a short sunny walk where we caught up with each others' feelings about the previous few days.
I won't receive the scan results until the middle of next week, after the specialists' team at Burton has had time to discuss them. This means a low-level uncertainty hovers over me (like the scanner) until then. If there is cancer in my spine, my treatment may be modified or rethought, and my prognosis could also change.
Though this hangs in the air, it's the smaller things that mostly niggle me - like the fact my PICC elbow opening has bled slightly, or my bowels and stomach being unsettled for the last couple of days. Getting on with everyday life can be a challenge but also feels like the best, and most helpful, way to keep going.
There are two other things that help. The first is being able to laugh at the funny incidents that happen as we go; like when I accidentally turned the lights off in the chemo unit as we left, thinking I was pressing a door release button. Or the mug the kids got me for my birthday (above) which describes both my pre and likely post-chemo hair state (although apparently my eye lashes could grow longer than normal, even if I do lose my remaining lock/s!).
The second thing, and this will never become a cliche, is the ongoing friendship, support and kindness shown in messages and conversations with others. A practical example of this is our friend Amy who, virtually the day after I was diagnosed, signed up to walk 100 miles in May to raise funds for Cancer Research. She's also roped our friend Louise in. And then there's Dan's girlfriend Georgia (our 'third daughter' according to Lisa!) who is running her first ever 10k this autumn to raise money for Bowel Cancer UK. Please read their pages and, if you can, sponsor one or all of them. I - and they - would really appreciate it ;)
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