100 Days in & 5th Chemo Cycle - 13th July
I thought the milestone of 100 days should be something that required acknowledgement.
According to my app, that helps me keep count, it's also: -
247 days since, I felt uncharacteristic swelling in the Occipital area. I can only assume this is linked, although no action was taken (by GP or me) as a result of the ultrasound. I tend not to dwell on this, as it is what it is.
198 days since I first took notice of the mango stone size lump in my Inguinal area (groin). That lump was painless, soft, mobile, and felt quite deep.
125 days since I had an ultrasound in that area. Dr Google informs that one should 'monitor' such a lump for 4 weeks. Well, I guess I stuck my head in the sand for a wee bit longer. That said, however, it did not seem to be getting bigger.
120 days since the significant diagnostic events of PET and Gated heart Pool Scans. Unobtrusive but critical diagnostic procedures.
I also had my Bone Marrow Biopsy around that time but have not recorded the date anywhere 🤦.
107 days since the appointment with Dr Greenwood to inform that I have Mantle Cell Lymphoma. An incurable (but treatable) cancer of the Blood. Rare and aggressive in nature. Treatment is about getting to and keeping that remission phase as long as possible as 'it does and will come back'.
I recall writing about that statement. It seemed very fucking stark. Very real and very scary. And still is to a large degree.
In the 100 days, life has changed for me, at least my perception of it has changed. I say that because life just goes on, doesn't it? Whether I'm here or not, the fucking noisy bin-men at 4:30 am will still come round; there will still be spurious, annoying fire alarms of nearby residential towers disturbing the stillness of the night, and the planet will still rage against us in what seems like ever increasing intensities; with drenching catastrophic rain here; and Sun and temperatures that mean Scotland's penchant for 'taps aff' results in much requirement for Aloe Vera, cold showers and an increase in skin cancer after only having taken their dust bin out.
I mean, not to get too philosophical, but this situation can't help but force me to take a stance that today is today, yesterday has gone, and who knows if tomorrow will come? What does that mean in reality? Well, it means that, upon reaching remission, hopefully in (let's say for convenience) another 100 days, life will be different; I will take time to enjoy things; do things; do things differently and try not to sweat the small stuff. I may put a Toley on the handle of the bins, though, just for shits and giggles.
I should also note that, until I see Greenwood again, my remission is still a bit of a lottery. He did state that some get remission for up to 20y (although I drew from that, that that was extremely rare), and some may only get a couple of years. From what I've tried to learn whilst on this journey (I still can't decide if the use of the word 'journey' is ok or it's a bit wanky), I think because I'm young (in context) and fit (definitely in context) that the remission that's being targeted is likely to be longer than shorter. Frustratingly for me, Greenwood would not, and hasn't as yet, stated if it'll be closer to 20y or 2y. And I think I'm satisfied, for now anyway, that he won't say because he can't; he just doesn't know. Now, that may change when I see him on the 2nd of August. I'd be prepared at this juncture, however, to bet a pound to a penny (one of my dear Dad's favourite sayings) that any prognosis will be so fucking non-specific that it might as well be 2-20y! It will be full of "what we know is", "what we tend to see is", and "but". In other words, nothing by way of any certainty or even a narrower window. In case you think I'm deliberately taking the pessimistic side of the equation; I'm not per se. It's hard to ignore the stories I am now privy to, of post-remission relapse of 3 months, 1y or 2 years, however. It happens, and the frustrating thing is, it appears that the scientific community does not know why? Playing the numbers game, because I guess that's what it comes down to, means that I am likely (maybe) to see my 60th birthday but 65th is less likely, and 70th would be an outstanding outcome. Still doesn't sound that great to me, to be perfectly fucking honest.
So, back to 100 days, eh? What do 100 days as an MCL Warrior look like? I definitely am not a great fan of the use of the word Warrior; it does seem a bit wanky to me. Can't really describe why. In an attempt to explain; I just don't gravitate towards it. That Collegiate, rah-rah, motherhood and apple pie bollox is something that I was exposed to for years and years in my career, and I find it a wee bit disingenuous. Then why did you type it, Thommo, I hear you say? Well, I haven't thought of another term that works, to be frank. But being a Warrior indicates some level of bi-directionality in the relationship with the 'Warrior' and adversary. In my view, there isn't; it's a one-way street ultimately; ultimately, MCL wins, always, it seems. I'm nothing more than a passenger, a person who's trying to find the footbrake, the handbrake, the airbrake, and any other fucking break I can find to slow arrival at the destination. MCL Passenger or MCL Brake-person doesn't really have any ring to it, so until I can think of a nomenclature that suits me, MCL Warrior it is. It's not lost on me that some may read this and be turned off, as it is used so widely; if that's the case, you are entitled to stop here or keep going; I'll leave that to you to decide.
Ok, 100 days being treated for MCL..... I want to say it's shite. I want to say it's brutal. I want to pillory Chemotherapy, the side effects and living through 100 days of it as being the worst thing I've experienced. In short though, it's not; well, not quite. It is all of those things some of the time, but not all of them all of the time. There are bad days and worse days, good days, and better days.
I've posted along the way about what is happening by way of acute side effects and as the posts have mounted up, I've also posted on some cumulative impacts that are similarly mounting. Right now, at 100 days.....
I'm pretty fucked (Scots term). I'm exhausted, so tired, tired beyond anything I've ever felt. I can easily sit down and sleep within seconds, and for quite a while. I can feel instantly heavy-eyed at any point. I cannot walk far. A 300m, very slow walk, to lunch with Kerry and the Young Team, was excruciatingly exhausting. I was breathless, dry of mouth and couldn't speak for 10 minutes after taking my seat.
I have some gastrointestinal issues that I won't elucidate on further, other than it's mild, mildly irritating, largely embarrassing and quite windy 💨.
Currently, my acute side effects for this cycle have been Mucositis; excruciating mouth ulcers. Those lasted for about 4 days, making talking very difficult (Kerry probably loved it) food tasted different and what can only be described as an incredible cotton mouth for the whole period.
My weight continues to fluctuate massively, by up to 7kg (15.4lbs).
My vision is definitely worse; I really hope this resolves in my recovery period.
Chemo-fog continues to be real; I feel very pedestrian in thinking; I'm losing the ability to conversate and follow concepts, sometimes with a great deal of pause to find words, remember things, or do any immediate processing.
I seem to be hanging on to my eyebrows.......just. I could probably count the hairs on each one. And it's currently about this number of days after a Doxorubicin cycle (C1,3 & 5 for me) that my hair fell, so whether they last the weekend remains to be seen. which leads me to...
My hair is coming back. Now, that's a highly aspirational statement. I have what can only be described as 'peach-fuzz' on my head. And tomorrow, I will have to shave to go out with colleagues for an open-air lunch. Whether that fuzz on my head will last through Transplant, remains to be seen.
So? Yes, I would not wish this on anyone. It's tough. It's been painful at times. It's been downright uncomfortable at times. But I'm here, I'm alive, I'm dealing with it, and I'm getting on with it....... there's no other option, really.
Oh!!!! Last week I got some dates confirmed. these dates are all pretty big events. events about which I'll blog at the time. In short, however, I have appointments with my Consultant, my last round (C6) of NORDIC (R-HiDAC), my last Rituximab infusion, the harvest of stem cells (16th August) and soon after, the Transplant. The transplant could possibly be the last week of August but, failing that, the first week of September. All of those are highly subject to change based on the COVID burden at the Hospital.
Transfusions have increasingly become more and more a feature of life, with me having had them every week for 4 weeks now. These have thus far been for Packed Red Blood Cells and for Platelets. I think I understand why, and that is that Chemo basically fucks your body up, including your Blood and where its produced (Bone Marrow), and what quality of Blood is maintained. So, I need 'top-ups' regularly at the moment. Last week and this week have been multiple units of each. A unit of platelets takes about 30-40 mins to transfuse; a unit of Blood is 2hrs. It is peculiar to contemplate that I am getting something put into me that was inside others only hours previously, a couple of days at most (I think). It poses a couple of questions for me, one scientific and one philosophical (I think comedically, so not really philosophical): -
Where is it going? I mean, If I have had 4u of platelets and 12u of Blood. This is more than my own natural blood volume. Where have they all gone? I've not gotten to the bottom of this yet. But I don't think it's coming out of my bottom.
Is there a point at which I start to develop different proclivities? I mean, if Blood is the elixir of life, do I begin to feel like another person at some point? Might I start to like Celery? Could I develop a dislike for Bread? Could It be that I want to explore different pleasures? Could I begin to have sympathies for Hibs?
Some of those changes in #2 are definitely worse than others; I'll leave it to you to decide how they'd rank in my own (original) scheme of preferences.
Cannae wait for the football to start again; 'mon the fucking famous Heart of Midlothian.