Wow, a year has passed so quickly!
As I begin this blog post, I wonder what to write about and what to share.
I started this blog as a way of keeping my mind active, distracting myself, and checking my fine motor skills. It was also a way of updating my friends and family on my situation. But now, I feel like everyone I know already knows my story, and my original three objectives are no longer relevant. The blog almost feels like a bit of a vanity project. However, I have received great feedback on the blog, and many people have encouraged me to continue writing in some way. Maybe some people think it’s rubbish, but they have been kind enough not to say so.
So, where do I start?
As usual, this might take me a couple of days to write. I started writing this on October 18th, 2023. Here is the timeline of my journey:
It has been: -
99 weeks since I first noticed something that was probably the first sign of trouble, but I ignored it and should have acted on it.
92 weeks since I noticed something that made me act.
82 weeks since I acted, and thus....
It has been 82 weeks since my diagnostic work up began.
79 weeks since I was diagnosed, 78 weeks since I started chemo, 64 weeks since I completed induction chemo.
It has been 63 weeks since I had my stem cells harvested.
It has been 61 weeks since I started consolidation chemo.
It has been 60 weeks since I had my stem cell transplant (day 0).
It has been 56 weeks since I was discharged from the hospital.
It has been 37 weeks since I had my full remission appointment.
As you may remember, the timing of my Mantle Cell Lymphoma diagnosis was terrible (when could it ever be a good time?). It coincided with some other life events that made things very difficult. I was discharged from the hospital only to return to a temporary and unpleasant accommodation, before moving to a new apartment. I do not recommend moving house while recovering from an autologous stem cell transplant (AutoSCT). I’m sure I wished I could have stayed in the hospital and let Kerry handle the move without me, but that didn’t happen. The move was on within two weeks of my discharge, and it was awful. I could barely walk without getting exhausted, and lifting anything would wear me out completely.
It is hard to recall the specifics of many things, so I will mostly stick to generalities, unless something is very clear in my memory.
Recovery is a long and slow process, with many ups and downs. I had to deal with nausea, fatigue, insomnia, fatigue, lack of focus, fatigue, bleeding, fatigue, weight gain, and more. I also had to visit the haematologist regularly, have another two bone marrow biopsies, take medications, get blood tests, and start rituximab maintenance therapy. I had some great milestones, like regrowing my beard, eyebrows, and hair, returning to work, going to concerts, restaurants, and opera, and stopping wearing masks. I also had some setbacks, like getting COVID-19, having a chest infection that took ages to clear, staying on prophylactic antibiotics for most of a year, and getting re-vaccinated (which is a whole story in itself).
There is so much to talk about, but it all seems a bit trivial now.
I stepped back from the Cancer Community for a while. Don't get me wrong, being part of a network of fellow Cancer People, especially those with MCL, brought immense comfort. Given the rarity of this disease, connecting with others facing similar challenges worldwide was a tremendous source of support. However, post-treatment, a strong desire emerged within me: to shed the identity of a 'Cancer person' and reclaim my individuality as Innes. I longed for a semblance of normality in my life, a chance to simply be myself again.
Balancing my longing for a ‘normal life’ with the arduous recovery from what was undoubtedly the most trying phase of my existence proved to be quite the challenge. You see, my disease doesn’t come with a cure. Achieving remission stands as the best possible outcome, one that I hoped for fervently, unsure of when relapse will occur—whether it’s years down the line or as unexpectedly as next week or month. The lack of certainty from my Haematologist only adds to the frustration.
The treatment I underwent, the NORDIC/BEAM/AutoSCT, feels like a sledgehammer aimed at a walnut. Interestingly, it’s coming to light that some Haematologists may view this approach less favourably. I find myself grappling with mixed emotions about this revelation. However, unable to alter the course of events, I’ve come to accept that in the realm of Cancer, one must adapt and manage the hand they’ve been dealt.
Amidst the uncertainties, a few reassuring words from Greenwood echoed in my mind: ‘You’ve achieved the best response possible, given your treatment journey. There’s a strong possibility of a lengthy remission, ensuring that the time you have is significantly more than what would have been possible without treatment.’ These sobering words have been a source of solace amidst the uncertainties and challenges.
But why did I find myself returning to the Cancer Community? The simple truth is that very few people truly understand the intricate web of emotions and challenges that come with facing this daunting dilemma. It’s not entirely surprising, really, as it’s hard to grasp the magnitude of this experience unless you’ve walked this path yourself. So, I sought refuge in a couple of Facebook groups: a wider MCL community spanning the globe and a general lymphoma group here in Australia. Their warm welcome embraced me, and I’ve continued to share my journey, focusing on my progress and the slow return to a semblance of ‘normalcy’. I believe this connection is vital, not just for my own well-being but also for those at different stages of their ride on the ‘C-train.’ It’s crucial for them to see that while not every tunnel has a light, many do lead to a brighter destination.
Yet, there’s a sombre aspect to mingling with fellow passengers on this train. With a higher percentage of my ‘mates’ grappling with life-threatening illnesses, the sorrow of loss looms closer. It’s always a jolt when the names you recognise are suddenly mentioned as having lost their battle. Even though these individuals may be virtual acquaintances, the news of their passing hits hard. I’ve seen a few who shared a similar path with me, and their absence weighs heavily on my heart. It serves as a poignant reminder of the fragility of life, even within the confines of an online connection.
Reflecting on these experiences compels me to address the deliberate use of certain terms. ‘Journey’ is a word I’ve come to dislike. It seems to imply a positivity that doesn’t align with the reality of having cancer and enduring the harshness of treatment, at least in my perception. Similarly, the term ‘warrior’ suggests a fair fight, but in my view, this battle is far from fair. It’s more akin to being a passenger on a tumultuous train ride, navigating through unforeseen hardships. Perhaps it’s a reflection of life in its entirety, but the burden of this illness does feel unjust at times. I understand this might come across as self-pitying, but it’s an emotion I grapple with from time to time.
So, what else has happened during my year of post-treatment survivorship? That’s another word I don’t like, but I don’t know what else to use.
As I approached the end of my treatment in October of last year, I grew increasingly disheartened by my appearance. Initially, losing my hair didn’t bother me much, or so I thought. However, by October, I was utterly done with it. The BEAM chemo preceding the transplant caused the fuzzy shadow that had started growing back after the induction chemo (NORDIC) to fall out once more. This time, it took my eyebrows and lashes along with it, rendering me completely hairless. To minimise the mess, I had my friendly barber shave my head and face on 12th October.
It wasn’t until around mid-December that I noticed any signs of regrowth. Deciding to embrace the experience, I resolved not to cut my hair for a year, considering I had already gone without it for about eight months. Now, 54 weeks after that shave, my hair has become a wild mess. Throughout the year, it has been a constant source of amusement. Once poker straight and mostly grey, my hair is now unruly and well past shoulder length. How long I’ll keep it this way remains to be seen, but I’m thinking it might stay until the New Year, perhaps for a symbolic haircut signalling my return to work and a fresh start.
Recovery has been a slow process, especially for me. I vividly remember struggling to walk to the local coffee shop and back, a mere 700 metres round trip, for an extended period. Even strolling around the small park near my home, also around 700 metres, proved to be quite challenging initially.
In terms of work, I spent a significant amount of time working from home, gradually transitioning to a full five-day workweek from around January onwards. Although it’s hard to measure the progress in terms of increased office days, I now find myself almost exclusively there for the entire workweek.
I’ll admit I stopped wearing masks almost immediately, perhaps too soon, in hindsight. Attending events without waiting for a safer period also turned out to be a misstep. In early December, I contracted COVID-19, a three to four-day ordeal, swiftly managed with antiviral medications. Kerry, however, was hit much harder, with a week of incapacitation. Around March, I battled a persistent chest infection that required two different types of antibiotics and took about 6-8 weeks for the cough to subside. Apart from these setbacks, I’ve been relatively well.
Navigating post-treatment life has demanded a shift in my mind set on various fronts. One crucial adjustment involves accepting that there always seems to be something looming on the horizon—whether it’s a scan, a Haem appointment, a blood test, or a Maintenance therapy session. Living with Cancer in remission often feels like a continuous cycle of ‘what’s next’? It’s a reality that must be embraced as part of life.
Within the Cancer community, there’s a term ‘scanxiety’ that captures the apprehension during the period leading up to a scan or while awaiting the results. It’s that uncertain interim phase where one grapples with the anticipation of receiving good, bad, or indifferent news. I strongly advise anyone facing similar situations to delve into strategies for managing this ‘scanxiety’ and find ways to cope effectively. That’s much easier said than done but I reckon it causes so much stress that it would be great if there were better support mechanisms for people.
Something that really resonated with me recently….
I was speaking with an Occupational Therapist about a specific initiative that he is involved in, and he spoke extremely knowledgeably about the conundrum. He described it as follows: -
Post initial diagnosis, through treatment and up to being declared ‘in Remission’, one is surrounded by a common goal that everyone shares with you. Be it you, your GP, your Haem/ Onc, your psychologist, family, friends, and acquaintances all share a common desire. That desire being to have a successful treatment outcome and be cured or achieve remission (dependant on your type dictating which is possible). Every single person wants that.
However, when you achieve it, their focus changes. Life goes on. Your Haem especially, as was/ is the case for me, turns away from you as his/ her primary goal is achieved and in simple terms their job is done. Friends/ family etc all have their lives to focus on and this leaves one in a void. A void that can’t really be understood by those who are not experiencing it.
The OT didn’t really offer solutions, that was not his job at the time but the fact he contextualised it so well has helped me in my thinking. That thinking being simply that I still have work to do to examine/ understand what this phase means for me and how I can manage it, whatever managing it looks like.
Anymore that I write is just musings, really, not that important.
I have posted on FB regularly about my hair. It seems trivial but it has actually become quite symbolic for me, and I sit here wondering how long I’ll last before I get the inevitable short back n sides.
As I now focus other aspects of life, Cancer hopefully continues to subside in my thinking although I doubt it will fully disappear even for a day. It is what it is, in simple terms.
I am back to focussing on my other health issues and at time of finishing this blog post, I am currently 11.2kg down (about 1¾ stone), a long way to go but steady as she goes and hopefully, I’ll get close to my target that I’ve set for my Birthday in February, wish me luck.
Leave a comment for me in the event you managed to get to the end.
Much love.
Thommo.