I've started this entry a few days out. So, it may span a couple of entries, or I may capture it all in one.
The critical juncture to which I refer is Monday 11th July. Actually, it's probably Tuesday 12th July. I suppose it could even be Weds the 13th; let me explain.
On Monday the 11th, I have a PET scan. As I understand it, the PET Scan is to check for chemosensitivity. Said differently to see how I'm responding to Chemotherapy, i.e. is it going well, or is this shite (the Cancer) still hanging around? That response determines the next steps. If I'm responding well, I continue with the last 2 Cycles of therapy, then onto preparation for my Autologous Stem Cell Transplant. If I'm not responding well, there is a decision point about whether to continue with the regimen I'm on to see if that eventually works, or change to a different regimen.
I'm learning as I go, and in a support group specific to my disease, I heard it described as being like Al Pacino and the mafia- "every time I think I'm out, they pull me back in." As stated previously, as far as current Science knows, Mantle Cell Lymphoma is incurable. Remission is the goal. My Haematologist is very clear with his words; "when this comes back." Not if, not maybe, or could; when!!!! Pretty fucking stark, eh?
I say that only as........I'm starting to think the whole treatment is a bit of a roll of the dice. What I'm being treated with may work, but also it may not.....who knows?
But there is this scan on Monday; a checkpoint if you will. So, here's me, Friday morning (as I type), heading into the weekend, knowing I have this scan on Monday. I'll then have to wait for a call on Tuesday (it may be Wednesday). The waiting is murder!!!
FWIW, and for anyone who cares; I personally feel a fundamental change in my Lymphoma. Some lumps appear, to me anyway, to have gone completely. Some 'softer,' lumpy areas also feel as if they've improved markedly. The prominent lump in my groin, that prompted me to see the doctor feels like it's gone too. About the areas that have 'improved markedly,' I say this only because, well, I can't actually feel anything but only the scan will confirm. Plus, I think I've read that some lumps can die but not disappear (my interpretation). In other words, the nodes are swollen, but they are not Cancer cells anymore. I hope that makes sense. There is also the issue of my enlarged spleen......but I can't feel anything and never really have, so no idea if there's any improvement in that aspect at all.
I promised myself that I wouldn't obsess with the PET scan or its outcome, for that matter. I think I’ve done well in that regard in the 16 days since my last cycle and knowing that the Scan was booked. But now, as I get closer to the day, my mind starts to think about what may come. I think that's natural. Does Monday (or Tuesday or Wednesday) indicate that the treatment path that I'm on has a great chance of taking me to remission, or do we have to contemplate some other approach? Who knows, eh?
A reasonably critical juncture, I hope you'd agree.
Oh! Why the confusion on dates, I hear you ask? Why did Thommo start with that?
It's another characteristic of this bugger of a thing...I guess. You see, I'm under the care of a fantastic Consultant, to whom I've referred previosuly. He's a bit scary, very authoritarian, and one assumes, carries the weight of many, many patients' outcomes on his (strong-looking) shoulders. While I want to engage in, what is probably tantamount to small talk, asking probably pretty insignificant questions, asking about how I'm going and generally being inquisitive, it's not how it works, I'm sad to say. He 'heads up' a large department and is the Director of his field in what must be one of the largest Cancer Centres in the Southern Hemisphere. He can't possibly be available for my musings, inquisitions, and penchant for a bit of banter. I have seen a flow chart (which obviously I can't fucking find now) that says basically.....is he (or she) young; is he (or she) fit? If yes......NORDIC protocol. It's as simple as that. In that protocol (or regimen; are they the same thing, I must look that up), the first checkpoint of significance is the C4 PET scan, the scan I'm having on Monday. So, and this isn't really me in general terms, I've surrendered to the process; tried to be a good patient; tried to inject humour, and tried to keep myself in a good place mentally. But, the lack of feedback and 'check-ins' (as is the way in the Corporate World, to which I am wholly conditioned) is actually fucking killing me. But it is what it is and I trust the process; I definitely trust the care of the team 'below' my Consultant, and I absolutely trust his judgment and decision-making on my treatment. The fact he’s just not at my beck and call to have a chat about how I’m feeling at any given point, is just part of the process. I have to get over myself on that front.
I have, at the time of closing this entry, between 72 - 96h to wait until I get the result of that scan. I'll fill some of it with weekend activities that will inevitably take my mind off it, from time to time. But, there will be times when I ponder what is coming.
I think it'll be fantastic news; news that I am winning 👊🏻 ((💪🏻)) 👊🏻
Wish me luck.
Fuck Cancer 🖕🏻🖕🏻🖕🏻