Chapter 16: The worst news…

You probably think that there is nothing worse than being diagnosed with cancer, and if you had asked me a few weeks ago I would have agreed with you, however this past week has taught me otherwise. What’s worse than being told you have cancer you ask? Being told that your cancer hasn’t responded to chemotherapy. Yep. And let me tell you it doesn’t get any easier to hear these kind of things. 

Let me backtrack a bit to explain things. Halfway through my chemo, I had a CT scan to check how things were going (this is common practice) and it showed a great response. Just a small amount of tissue left in my chest, which they had assumed and hoped was scar tissue, and practically no tissue left in my abdomen/pelvis. Second half of chemo went ahead like normal and with my blood levels all within ‘normal’ range and me as healthy as can be expected, after my last chemo on the 25th of October I was sort of discharged from my consultant (not fully of course, but no need for weekly checkups), again this is all standard procedure.

Fast forward to a week ago, and I started having some abdominal pain and discomfort again. Immediately, I knew that it was the lymphoma; call it instinct or intuition, or maybe just common sense. I mean what else was it likely to be? I left it just over a week to see if it went away, I thought perhaps there’s the tiniest outside chance that it’s something I’ve eaten or a pulled muscle, but it didn’t and so Wednesday I went to see my GP and things moved pretty fast from that point. My consultant saw me later that day through A&E, admitted me to hospital that evening to get a CT scan done the following day; he didn’t say implicitly at that point what he was thinking but we all knew.

Thursday I had the CT scan and was told that they were going to do another CT-guided biopsy on Friday (more of a legality than anything, they know exactly what it’s going to be, diffuse large b-cell lymphoma, but they have to by law before any new treatment is started). The biopsy was uncomfortable, but by no means the worst thing I’ve endured so far; the safest mass to biopsy this time was the one in my pelvic region rather than the one in my chest like back in March, and I was told that they would have to go in through my butt cheek. Ouch. An arse cheek full of local anaesthetic is not the one. That went ahead without a hitch, just one sore half-arse. Later on Friday, I was given a new PICC line (my third central line, second PICC line) by one of my lovely cancer nurses from my unit, but having already had 2 lines previously it was a walk in the park. The one that was in my right arm (this new one is in my left) was only taken out a month ago! Bloody Sod’s Law.

Then a few hours later my consultant came to my room to have a proper chat about things. There’s no beating around the bush really, and I’m glad my consultant says it like it is; this is not good. The lymphoma has grown back quickly and aggressively since chemo has finished. This means that it was (or is I guess) resistant to chemotherapy. Now they are going ahead with something that I knew was a possibility from the start, they call it salvage chemo, chemo they try when standard treatment doesn’t work. It’s all very rushed and so it’s been a bit of a whirlwind really, which is good, I don’t need time to worry and think, I like to be busy and be busy having treatment and such. 

As far as I understand so far, this next type of chemo (which is going to start tomorrow; when I say they have moved fast around this, I mean it!) is completely different drugs to what I’ve already had. It is called GDP and consists of high dose prednisone (a steroid) and gemcitabine and cisplatin which are chemo drugs. It’ll be delivered on day 1, and day 8, and then repeated on day 21, as long as I have recovered in time. I’ll have 2 rounds of this, then a repeat scan to check how things are going. If it’s working I will then have BEAM chemotherapy (which again is just another combination of drugs) for 6 days, followed by a stem cell transplant (of my own stem cells hopefully) to re-seed my bone marrow after this extra strong 6 days of chemo virtually kills it off. I’m not really sure on the timescale of these things, my wonderful consultant will be planning these things out as I type, that’s his domain and expertise and I trust him implicitly.

So, the shit side of things. This GDP chemo has about a 50% chance of working. Which is f*cking shit, let me be the first one to say that. If it looks like it isn’t working then I will be eligible for a very new, just-on-the-horizon treatment option called CAR-T therapy. But let’s cross that bridge if/when we get to it. 

I know everyone’s response to this news is going to be to want to message me with “I’m sorry”s and sympathy, but please don’t. It does not make me feel any better about this situation and it certainly doesn’t help it. It is something I have zero control over and you telling me you are sorry does absolutely nothing other than make me feel crappy. I intend to carry on with the same positivity and brightness as I have all year, taking each day as it comes. So please, by all means, message me and talk to me about this, but keep your sympathetic smiles and your “sorry”s to yourself please, and just talk to me like you always have! I’m still the same stubborn, strong-minded Lucy, nothing in the world will change that!

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4 thoughts on “Chapter 16: The worst news…

  1. Coffee machine awaits your return.. and the blinds still need doing…xxx… letters have arrived for price list and is on the wall.. still getting comments about the missing letters… xxx

    Liked by 1 person

  2. Agree with everything you say.
    Just started chemo.
    Your positivity Is a boost for me. Because , Lordy am I struggling.
    Sympathy is nothing compared to letting someone just be.
    And please keep writing Lucy.
    Love chemo zapped patient in hospital in bath x

    Liked by 1 person

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