Hurry up and......
Updated: Oct 25
This Cancer lark really is a game of Hurry Up and Wait.
Hurry up and get it over but wait until the timing of everything means that it is actually over. But the sting in the tail is, that it really is never over.
I’m now 6 weeks since my last Chemo, the longest spell I’ve been since a Cycle since I started Chemo on 20th April; 5 months ago. In some regards, it feels like a slog; I mean, it’s hard to remember what I looked like in a mirror with hair. It’s hard to remember not being worried about wearing a facemask; it’s hard to remember a time when I didn’t give a shit about infection. Not that I didn’t care at the time, just that I didn’t really need to think about it.
The wait continues but will soon be over on the 15th of September.
On the 15th, I’m going for Stem Cell Transplant Conditioning Chemo, called BEAM. On 21st September, I get my Stem Cells, which were harvested on 19th August, re-infused to ‘rescue me’. Rescue is a term the Bone Marrow Transplant (BMT) Team use to describe the transplant, as in rescuing me from having Zero Bone Marrow and ZERO Immune System.
In BMT speak, the 15th is day minus 6, 21st is day 0, and then the + count starts. At this stage, I’m told that few get out before +14, and I might be closer to +21 due to my size dictating that I need a higher dose of things. So, I am setting a personal target to try to be out as close to +14 as I can. Regardless, it looks like it’ll be 3 weeks in hospital, maybe close to 4 weeks.
As I ‘wait’, I am petrified, to be frank. I am really not looking forward to it at all. From what I can glean, and from what I’ve been told by my Haemo, Nurses, the BMT Team, the BMT Nurse Coordinator, the Apheresis team, and basically anyone who has any experience of this, this next phase of treatment is ugly. There’s no other way to put it. The Chemo, in and of itself, I believe, is pretty straightforward, and given that R-maxi-CHOP is considered to be very harsh, I am not that worried about BEAM itself. I am worried about the days after when the side effects kick in. I won’t bother you with the list of side effects, but I am very worried about how much I personally will be affected by them.
I started with hurry up and wait because this 5-week period has felt like a hurry up and get things done (harvest and tests etc) and just wait for the transplant schedule to kick in. Bear in mind also, we’ve packed up our apartment, moved out, moved our stuff into storage, moved into temporary accommodation, trying to get an understanding of when the new apartment will be ready, completed paperwork and all the ‘stuff’ that goes with a house move, mail re-direct, disconnect of utilities, address changes with everyone etc ad fucking nauseum. Actually, we don’t know the new address yet, so have to have a temporary address and, in isolation, these things are irritations; all together, they are one big pain in the arse. Oh, and we have a car changeover too. Yes, that event that is supposed to be a real pleasure any other time is another fucking nightmare. Nothing seems to be going smoothly at the moment. So, it all sounds exciting, and to be frank, it probably would be if I didn’t have the Cancer bogeyman on my shoulder.
It feels very selfish, but all I can think of is, the Transplant and the Hospital stay. It clouds every day, every hour. I feel so guilty for this happening when I need to be able to help with stuff, and I can’t.
At a recent appointment for my pre-Transplant checks, the last thing that was said to me was, “Stay safe. Stay healthy. Remember, where there are people, there are sick people”. Sure, we’ve been out on occasion, but the sense of confinement, especially as we are in unfamiliar, cramped accommodation, is total. I feel very hemmed in. And I feel bad for Kerry, who is also carrying the burden of a situation she didn’t ask for.
The waiting time means that my mind, which is typically very overactive, has become even more so. It’s made me realise that MCL is a race without a finish line. Well, there is a finish line, just as there is for everyone, but it’s how quickly that finish line happens for me.
I wonder about how long my remission will be. Will I have a long remission of, say 20y (quite rare, I think), or will I have a very aggressive relapse of, say, less than 1y (also reasonably rare)? Where in that window will my fort relapse happen? What is the next treatment option when I do relapse? Is it treatment x or treatment y? How many relapses will I have? MCL relapses are unpredictable by current medical science. They are certain but unpredictable in timing. Unless research changes things, I realise the race isn’t a race that I can win; more it is a race in which all I have to do is stay one step ahead of the dreaded C word. that's all I can do.
When I should be looking forward to transplant, and grateful for the treatment success to date, all I can think of still is, how long my prognosis is. Sadly, no one knows.
Biden has just been on the News with his speech about Cancer, that’s been likened to Kennedy’s Moon-shot speech. Fuck, I hope he is right, that they will find a cure for Cancer in a similarly short window.
So, at the moment, I am hurrying up and waiting for the next known phase, Transplant. But I am determined not to be ‘waiting’ for things after Transplant. Sure, I need to recover. Sure, I’ll need to take it slow. Sure, I’ll be able to do it in the comfort of a new home, with a new bed and all. But fuck that for waiting around for relapse or next treatment or whatever; I intend to live. I can’t wait to get back to work properly. I can’t wait to travel, domestically at first, then hopefully internationally next year. I fully intend to run that race and stay well in front of ‘C’.
In the meantime, poor Kerry will have to deal with the house move on her own. Deep down, I think the mischievous in me thinks it is excellent that I don’t have to deal with the shite of the move, but I reckon having a Transplant is a pretty extreme avoidance strategy. She will get to pick up the new car as well, so that’s a bonus. Maybe, I’ll get a new Car next year, who knows.
So, it's hurry up and wait for a tiny bit more. Then is a race without an end. I can’t do anything about either of those. What I can do is, try to smile every day and not sweat the small stuff. So, utilities, internet, address changes, mail re-directs, and all those other wee trivialities can all just take their place in the list of priorities; or, as I used to say, mostly about work ‘to do’ items, they are all firmly in the important but not critical quadrant.
I have my last blood test on Wednesday, the 14th. I will also have another last (for now) PCR test. Kerry and I will go for Dinner on Weds evening; it’s likely I’ll have a wee Margarita and/or Wine; I mean, how much worse could it be than if I didn’t drink the night before?
Ahhh…I forgot to say…
Amongst the pre-Transplant tests, I had to have another (2nd) bone marrow biopsy. I wasn’t happy about this at all. The first time, it was fucking hellish. Well, this one wasn’t so bad. I took (with approval) 10mg of Valium and sucked on that Green Whistle HARD. I was also given a tip to HOLD each breath, which I did. Apart from a few seconds of discomfort, maybe 2 or 3 times, I really can’t recall the procedure. So, that was a bonus. I retract my hypothesis that Green Whistles are bogus.
But the biggest bonus in amongst a bunch of test results such as Lungs, good; Heart, acceptable; Blood, ok; is that the Biopsy is CLEAR!!!!!
As we say in Scotland, “ya fucking wee dancer!!!!!!!”