This day last year I started chemotherapy for my relapse of Hairy Cell Leukaemia. It’s hard to believe it’s been 12 months but thankfully, here we are! At the time, my calendar was filled with chemotherapy appointments and blood tests, every two weeks running until end of May, but in our minds, we were taking it one day at a time. Looking forward at the time, all we had to go on was what happened during my initial treatment, neutropenia, infections, spells in hospital, blood transfusions, litres of antibiotics etc. What actually happened was quite different.
Despite this, there were a number of events that I was determined to attend (if possible). My brother’s wedding, my sister in law’s wedding, a memorial concert for our good friend Steve who sadly passed from Bowel Cancer, and the Ride London – for which I’d already secured a place, fundraising for Blood Cancer UK.
Timeline
As you may have read from previous posts, I was fortunate that my treatment schedule and my recovery enabled me to make the events I’d planned.
Previous Blog Posts
After Treatment
Things pretty much settled down again to “new normal” after treatment finished. I returned to working 3 days a week in the office, got back to rehearsals and concerts, continued with running (including my deferred Bedford Running festival place from 2022) & cycling over the summer.
I did get what I managed to avoid during the pandemic, pick up COVID. Fortunately, it was still during the period when the NHS would respond to positive tests for those of us on the shielding list and issue treatment. This was a very impressive turnaround as I was called within the hour after reporting the positive test. Once some details were confirmed and stock checked with the local pharmacy, treatment was provided and I started taking the course of medication later that day. I still have blood tests and consultations every 3 months to ensure that all is OK. My numbers were still on the low side during summer and early autumn, but most recent test show all in normal ranges.
Reunions, Holidays & Anniversary
We finally had some visitors over to us in August – my sister Claire came over for a few days early August, then sister Julie and Nephew Daniel came late August. We had fun hanging out doing touristy kind of stuff nearby and in London. We also managed a weekend break in the New Forest (worked it in around one of Helen’s gigs). While Helen was at here gig I did a long(ish) cycle around the forest which was good – didn’t get lost!
In September, Hitchin Band competed in the Brass Band National Finals in Cheltenham, having qualified in March (without me playing!! harumph!). This is almost a carbon copy of what happened on my first episode, when I was with Regent Brass, we qualified in March for the finals later that year. This time, I made it back on stage playing Soprano Cornet, rather than on percussion with Regent. It was a great day as a reunion (we’ll ignore the contest result, although we played to our plan) as my chums from Manx Concert Brass had also qualified, along with Regent Brass. Spent a long time in the bar that afternoon, catching up with lots of banding chums. Pictures of us on stage can be found here (as well as all other performers).
We did manage to get to Ireland in March for my brothers’ wedding, and prior to that, we’d not managed to get a holiday abroad in since before the pandemic. We finally got to book a short city break away in September to Porto in Portugal. We were really fortunate to have great weather so spend a few days mooching around Porto taking in the sights sounds and flavours, including a trip to the Douro Valley. We ate at a few really nice places, lots of wine / port / custard tarts and other tasty Portuguese treats.
On November 2nd Helen and I celebrated our 20th Wedding Anniversary. Helen has definitely earned her “in sickness” badge, having been at my side for both these episodes. From nagging me to drink green pond water (smoothies apparently..), driving me to and from appointments, telling me off for “over doing it” and in general being fantastic, keeping me going. It’s impossible at times to understand how these kinds of episodes affect our other halves and close family members and friends. It’s great to have their support – I don’t really want to return the favour, as I don’t want them to get ill – if that makes sense! 🙂
At least now I’ve had the all clear (and someone has renewed her passport) we can get away somewhere to chill and celebrate in the new year. For our anniversary, we held an autumn garden party in our garden, that involved hiring and setting up a 10mX5m marquee in the garden (incidentally, when collapsed fits in the rear of Mercedes-Benz EQE300 with the seats folded down – wasn’t expecting that).
We had to cook for nearly 30 people as well as get the marquee setup. We were grateful for the help with assembly the day before from Tom, Jo & Will (we needed the tall child). Niamh was present too but abstained from helping (short Power genes) – but funnily enough, came alive when the tv program where the pretty young chaps who drive the fast cars around tracks came on! 🙂 We thanked our marquee team with a take away curry (the stove was occupied with party food!)
It was so much fun having the garden party – everyone had a great time and the food went down well – was great to see everyone. We were so busy having fun, we didn’t take any photographs!
Was so tempted to write this post in the style of one of those Christmas circular letters as it is kind of rounding off the year.. look at all the stuff we’ve done, where we’ve gone etc. Sorry if it gives off those vibes.
To my astonishment (well, shouldn’t really as I know a bit about web stuff!!) to me, my site does get quite a few hits from people searching for information on Hairy Cell Leukaemia. I’ve had several people over the years drop me a line thanking me for posting information on this rare condition. It’s also important I feel, to post about life during and after. It’s a very treatable disease, however unpleasant that treatment can be at times. I’m also very aware that not everyone responds to treatments for so many reasons. I’ve had friends and family diagnosed and treated for other cancers during this year – I wish them well with their treatment and recovery.
Right, time to wrap up – got to do some practice – busy gig season starts tomorrow with Hitchin Band Snowman performances.
Until next time, seasons greetings, take care all.
