Hi and it’s about time to do a blog and update you all on how I have been getting along. I’ve quite a bit to tell you for once and I wanted to make sure I had something unlike a lot of the previous blog posts.
The main thing to tell you is that my pain is at this time pretty much next to nil. It’s nice as I can really only remember a few times in 2020 that I could say that. I am still taking my tramadol as if I have to wean myself off the drug to only have to start taking it again… Well anyone that has had to take tramadol for elongated time periods will attest. It’s a pain in the arse. I am only taking a fraction of the dose I have previously taken, I think I am down to 50mg twice a day. Any pain I am in will be masked by this dose I am sure.
On the subject of drugs, I have just completed my quarterly review with Dr Kuhan from the Care Oncology Clinic (London) and he’s happy with my blood test results and has cleared for me to have my new prescription for the next 3 months. Although I am not on any form of treatment at the moment, the medical trial drugs still have worth, they still prevent the cancers from growing so it does make sense keeping it up. I just received my prescription this morning and have been sorting out all of my stocks. Opening all the boxes and putting them into easily accessible containers. I find if I do this, when it comes to filling up my pills box for the week, it only takes a minute or so compared to a 20 minute task. However, opening 90-120 boxes of meds (3 months supply) is a pain in the h*cking arse!
So in my previous blog, we had the results of my latest PET CT Scan, (Quick Recap) Still no signs of any cancers in my bowel, Liver, Seminal Vesicles, pancreas or Prostate. However, the tumours in my lungs now totalling Four and Two of which are at the 2cm size.
Dr Pedley had referred me to his colleague in Newcastle for SABR and my case was reviewed by their MDT and unfortunately. Due to the number of tumours and their positions. I am *not* a good candidate for SABR.
This comes as quite a blow to Kerry and me. I had pretty much decided to myself that SABR was going to rid my lungs of any cancers and I would be on my journey to this elusive ‘N.E.D.’ or no evidence of disease. The prelude to hearing the word ‘remission’ some 5 years from now. I’ve had my angry stage, I’ve had my pissed off stage but all is not lost.
Dr Pedley has referred me to his colleague Dr Fiona McDonald , consultant Clinical Oncologist at the Royal Marsden hospital in London. She specialises in another treatment called Cyberknife. Again it is another form of radiotherapy but is more specialised. My understanding is that the SABR procedure could cause too much damage to healthy tissues in my lungs and because I have 4 different lung cancers that are in 3 if not 4 different lobes of my lungs, could leave me with no lungs at all. If you don’t want to click the above link it describes Cyberknife as:-
“Using… X-ray cameras that monitor the position of the tumour and sensors that monitor the patient’s breathing. This enables the robot to reposition the radiotherapy beam during treatment in order to minimise damage to healthy tissue. CyberKnife moves with the patient’s breathing and can track a moving tumour …Because of its pinpoint accuracy, CyberKnife allows larger fractions (doses) of radiotherapy to be delivered, meaning that the patient requires fewer hospital visits. For example, visits for lung cancer patients could be reduced from 30 to three”
So, I really am waiting at the moment for any word from Dr McDonald, a week ago Dr Pedley sent me a text asking if I had heard anything yet, he then said he would chase and came back saying she was on leave but what with Christmas, I shouldn’t expect an update till first week of January which is the coming week.
Fingers crossed I can be accepted, my bestie David lives in London, if I need digs for a couple of days, I am more than sure he can put me up for the night or three. However, I am not getting my hopes up like I did with Cyberknife until I know what’s going on.
On to Cyberpunk now, Kerry bought me the game for my Birthday on the 3rd (Dec) I have been playing it constantly now I can sit at my computer again, it’s been fun, I played the game as a kid (Those in the know, it was a role playing game like Dungeons and Dragons but set in the future. They have now turned it into a video game) I have had so much fun playing it on my computer, I haven’t done much else this Christmas other than play games and watch movies with Kerry and Rupert. We got a couple of board games/Card games from friends this Christmas too, we have played them too.
We didn’t decorate this Christmas as we are saving money like crazy as we are planning to move this year. We have an accepted offer in on a house but at this time, that’s all I am willing to tell. We all know the stress of buying a house and how much X, Y and Z can make a sale fall through.
I truly want to leave this poxy flat in Gateshead behind and leave it as a memory. I’ve had good times in this place, I met some amazing people (who fled to Australia) living here, and I had some amazing flatmates, James, Christie and Shepy. I unfortunately had an awful flatmate too, and I have his reminder every. time. I walk out of the house in the shape of a punch mark in the plaster. I’ve owned the place for some 15 years now and I will be lucky to walk away with a small loss. Sadly flats in Bensham just don’t make money. I never should have bought the place but needs must. Anyways…. Onwards and Upwards.
Kerry and I are excited for the new chapter in our lives together. It’s the house she deserves (the one we have in mind) and we know it’s going to feel like home, you know what? We can’t bloody wait! So another things to cross your fingers for please.
So all in all, a good update without a lot of bad, I am trying to stay positive about it all, I am going to put another blog update on as soon as I hear about the referral or if I have any other news. I have an update call with Dr Hainsworth on Tuesday next week to let him know how I have been since the procedure I had under general in early December, if anything comes from that, I’ll let you know.
Anyways, I promised this wasn’t going to be a ‘New year, New me’ blog, I don’t really do new years resolutions, but if I were to make one, this year will be a year of recovery not only for me, but for everyone, once this COVID mess has cleared up, I hope to be out there exercising, getting my strength back, losing a bit of podge too. If I have Cyberknife, then recovering from that and seeing what the world will throw me from there on.
From Kerry, me and the Derphound, We hope you had a good Christmas and we wish you a Happy New Year.