Results aren’t always what you want / what’s next?

Hi Everyone,

This blog was written in two parts. Firstly as you will read due to my lack of having a signal and the latter because of lack of content, I didn’t publish it until I got the results from the PET CT scan.

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Part #1

So as we speak I’m sitting in the Institute for Transplantation of the Newcastle Freeman hospital where they hide the PET CT scan department. It’s in a subterranean dungeon of the Freeman and because of this, ain’t no such thing as WIFI or 4-5G. I don’t keep any games on my phone, I can’t access music or books…anything. Oh well, I guess I can blog offline and upload it as soon as I do get a signal.

I may have covered this in previous blogs but if not then:- You have to have an infusion of radioactive contrast and then sit for an hour as it filters over your body. The idea being that cancerous tissues will feed off of this isotope/contrast and then light up like a Christmas tree on the modified CT scan.

So as I just had the cannula with radioactive crap put in my arm. No time like the present to get a blog done.

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I had my MRI scan yesterday, nothing to report. The hospitals are still empty as h*ck due to COVID-19 and long may that last, but it won’t. It has to go back to ‘normal’ whatever that normal may be. I spoke with Dr Pedley (my oncologist) yesterday and he’s as rushed off his feet as ever, dealing with his own case work and extra work with COVID-19 patients too. While speaking with him he did make mention that the radiologist we use to interpret my CT, MRI and PET CT scan results may not get a chance to look at my results until early next week. It’s no biggie if I am honest. We both agree I’d rather use the same radiologist for consistency. Dr Pedley always sings his praises, that “he’s the best in the North East.” I can see the logic behind this so I am happy to go along with that.

So when we get the results, they will copy in the Royal Marsden Doctors and Professors, they will then decide whether it’s time for Cyberknife or Cyberknife with the additional of keyhole surgery.

Tomorrow 10:00 is round 6/6 on my current chemotherapy treatment. It isn’t even here yet but I am already dreading it. I haven’t really had any downtime this fortnight. I usually expect to have at the very least 48 hours of normal but this fortnight has been gruelling. If it’s not pain in my legs and back then it’s headaches that are relentless. The nausea and heartburn can quite frankly…go and f*ck themselves. I’m just glad it’s round 6.

Dr Pedley and I spoke about this yesterday and although it’s nice to hear that someone is listening out for you. You’re still the one that’s got to go and have the chemotherapy. He has however said, he has no plans for any further chemotherapy in the near future. Whilst I’d be an idiot to think I won’t see it again in the future at some point, for now Dr Pedley wants be to get this last one done and then concentrate on recovery. He knows how battered I have been by the folfox and Avastin, he and I joked about how it’ll be nice to have a drink or see the sun or even eat a fricken’ prawn! (I love prawns. Everyone knows this)

Really, what I am most looking forwards to is not having all of these side effects. It’s be nice to get my strength back. Be able to take a walk again, get the milk out of the fridge without getting an electric shock from hell. Strange the things you miss. I think getting some normal sleep and it’s be nice to see some friendly faces too.

So that’s it really, get the next two weeks of chemo done. Then recovery. Something something bottle of red wine or two.

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Part #2

I received the phone call from Dr Pedley last night, I have had some time to process the information and I’ve shed a few tears but I think I have mostly made my mind up but I have been given some time to make my decisions yet.

I guess the first thing to say is that the PET CT Scan results just weren’t what we were hoping for, nope! Not even close.

Devastated!

The major take away from this is that my bowel and abdomen show absolutely no cancer taking up the markers from the PET scan therefore I still no longer have a bowel cancer. However, the lungs on the other hand have not responded as favourably as we would have liked in the 3 months of hell that has been my experience of Folfox and Avastain.

Yes, everything had decreased in size. Yes, the metastatic cancers have cavitated. All of the recorded/known mets have a marked reduction of 25-40% which is all great news. It just is highly unlikely that this is going to be good enough news for the Royal Marsden hospital professionals to see me as a good candidate for further treatment. I would also expect the same answer from the North East hospitals and their SABR procedures either.

So I guess the first thing to say about it is that we haven’t heard from the Professor Cunningham or Dr McDonald from the Royal Marsden yet. I think that Dr Pedley was quite upfront about it last night though, (I guess letting me know not to get my hopes up) It would be completely asinine of me to think that they’re going to see the results looking so similar to the last results and think that I am going to be able to progress forwards.

I mean, I could be wrong…Right?

Aye, shite!

Well, though we discussed it last night. Dr Pedley is going to contact me in a couple of days when I have had a chance to process the information and make a decision.

I did already say to him on the phone:-

“What’s the point in pausing the treatment if it is going to change the efficacy of past and future treatment”

Though you may not know this, chemotherapy continues to work for the weeks and months following the treatment, so I could technically have a break and be tested again in 6-12 weeks time. This is the game we have been playing for the last year now isn’t it?

Cancer too big, cancer too small.

I’m not h*cking Goldilocks am I ?

So really it’s a case of talking to Dr Pedley again about this, and again this is something he’s mentioned already, he’s unsure if giving me anymore Avastin would be effective. With me being so battered by the chemo treatment in the last 3 months whether it would be sensible to reduce the doses and keep me on treatment and therefore keep hitting these cancers over and over and hope that I will respond in the correct way or rather in the way that favours me being accepted for the SABR/Cyberknife surgeries.

So this is where we are. I’m utterly crushed, I have had every iota of wind knocked out of my sails and it’s another summer I am going to miss, locked down in the house, though I have had both of my COVID-19 jabs now. I am still going to be immunocompromised for another 3-5 months.

I’ll leave the blog there for now. I may have to edit it a bit more but for now that’s all I got.

-C