I start my treatment for my HCL relapse this Thursday (17th Nov). It seems quite a long time since the initial warning signs were found in my annual check-up in July, but as bizarre as it sounds, it’s good to finally have a start date, because, a start date, means an end date!
I am facing 6 months of fortnightly chemotherapy (at the Lister in Stevenage) – where I will be given Pentostation by IV drip. This is a very different treatment plan from my first episode 5 years ago. It’s a similar drug, but administered differently (Cladribine is administered by needle – over a course of 5 days). I understand, you can’t be treated the same way twice after such a short time has elapsed. The side effects are similar and the effect it will have on me may also be similar (i.e. neutropenic – vulnerable to infections etc). I will also be on other daily drugs (antiviral etc..) like before to combat these side effects. I will also have to shield until the KPI’s in my bloods return to normal ranges. There is an option of a follow on drug if, after the 6 months it is still needed. I have another bone marrow biopsy to look forward to to determine that!
Work have been great, I’ve been working from home since July, but did pop in to the office a couple of weeks ago (and last week as car needed service!) to say hello. It was great to attend a couple of meetings in person (with mask) and meet some of the team working the project we’ve been working on for the last 12 months! I also attended an event with Hitchin Band a couple of weeks ago, where we had the Youth, Community & Hitchin band all playing together for the first time in ages (pre COVID I suspect). I’ve had to pull out of the Christmas Concerts and Snowman concerts this year. I also had to pull out of Brass Foundry concerts too, and turn down many other opportunities to play trumpet too. I will be with Potters Bar tomorrow for their Remembrance service as it’s an outdoor event.
I’ve tended to move away from the “fighting” analogy this time – how cancer journeys are framed are different for everyone, and the fighting one is a bit divisive. You are given treatment, surgery and you stay as positive, optimistic as you can. There are others and friends & family facing treatments at this time too, I pass on my best wishes to them and hope they stay strong.
I’m being optimistic – there are events to attend, things to do in the New Year, weddings, gigs, concerts. For the next few weeks, will take things day by day. Such is my optimism, today I signed up to Ride London-Essex 2023 100 Mile where I will be raising funds again for Blood Cancer UK. This ride is happening 2 weeks after my estimated chemotherapy finish date.
I will try and post an update every now and again during treatment – take care all! Namaste!