Well, I guess the title says it all. I have received an update from Dr Ian Pedley my oncologist that he received word from the Royal Marsden hospital in London, Professor David Cunningham said that after putting my case in front of their MDT, I would not at this time be a good candidate for Cyberknife, even with Key hole surgery to support. I think it’s either the number, the size or even the position of my lung metastases.
(I actually found out a couple of days ago and I have needed the time to sulk about it, more on that later)
So, what they have recommended is that I go back on a 12 week course of chemotherapy again, this will be different to the previous 5FU with Irinotecan chemo I have been on twice before. This chemo, although it will have Avastin in it (that’s the £10,000 stuff, that isn’t made available on the NHS sadly) but it won’t have Irinotecan in it. It will have something similar, but it won’t give me the chronic diarrhea and hair loss. This is welcome news for sure. Dr Pedley says that at the end of the day, David Cunningham is like the top guy in the country and very well respected and he really has to agree with him. So whilst I am not exactly elated to hear I am going back on Chemo again, I know deep down. I have to. So “Yaaaaaaaay!”
At the end of the last round, before we even knew about the main tumour being gone, I had told Kerry that I didn’t think I was strong enough to do chemotherapy again. I think I knew in my heart of hearts that chemotherapy and I would cross paths again some day but I was pretty sure that, or at least I had convinced myself. The main tumour was gone, I just needed to have SABR or Cyberknife to rid my lungs of the mets and then Dr Pedley would tell me that I needed to have another run of chemo to make sure anything floating round my system currently was killed lest it land somewhere and start growing. I just didn’t expect to be back on it again so soon.
I know I need to go back on chemo, David Cunningham’s like the top dude, and I know Ian Pedley too, they know what they’re talking about and I trust a doctors opinion. It’s why they get paid the big bucks.
On the other hand, what I don’t gotta do is be bloody happy about it. I keep thinking, but I have had a very long rest since I was last on Chemo, my hair grew back, I was moving forwards. I was repaired. More prepared.
Though we haven’t told everyone yet. Kerry and I are moving house. The idea is to put this on the market once we are in the new home. Deal with it once we have terra firma at the new house. We haven’t signed contracts yet but everything is moving along at the usual snail’s pace. Mentally, I think I am in a much better place than I was at the end of the last round of chemo, rested. The shock of finding out I wasn’t going to be going for the operation and the weight of the idea of chemo has fully sunk in now. As I say, I needed to have a sulk and a cry about it. I had a sleepless night and a moan to my friends. They’ll be there for me, more so Kerry and Rupert will too. Back to my diet of marmite on toast for a few months.
Actually, on that note, I was about 2 weeks into calorie counting my meals. Not a diet per se, but still taking in about 500 less calories in a day. This also due to my sedentary life at the moment but also to shed some weight. Ideally I am aiming to get to about 90kg so it’s about 10-12 I need to lose.
When I was actively trying to lose weight in the past, I found that just recording down what I ate in a day with its calorie content was extremely beneficial. I’ve been using the ‘My Fitness Pal’ app on my phone for yonks. I was put onto it by Kerry when she first started lifting. It’s excellent because it can scan barcodes and it takes a lot of the arsing around away. It’s a simple formula though, you eat less calories than you need/burn off you lose weight. You don’t have to only eat meat on a Tuesday or eat a magical smoothie every day to lose weight.
Diet and exercise, which is the other think I’d started again. I had just started working out with Kerry again. I am going to see if I can even keep this up on chemotherapy.
I haven’t been going mad, not Kerry level, I’m not able to tear a yellow pages in half just yet, (She’ll kill me) I’ve mainly done upper arm strength, but baby steps. When I was told to start shielding again, I really have only been out of the house once or twice. I’ve sat in the car for Kerry going to her own hospital/doctor’s appointments etc. I’ve been to the supermarket/shop once or twice but really, I have been doing what I have been told to.
Here we are again. The plan is 6 sessions of chemotherapy. That’s 12 weeks as it’s one on, one off. Supposedly less horrid side effects, but this one comes with a serious effect whilst on the actual chemo and for a day or so following. This one you can really feel the cold, supposedly like electric shock feelings say you go for something cold out of the fridge or step onto a cold tile floor.
Well my sisters sorted me out with some booties/slippers for Christmas bless them, so I am sorted there. I guess I haven’t really gone for a ‘cold one’ out of the fridge in gods know how long. So just a little bit of extra care and I should be good.
Sides aside, I think I’m okay at the moment, I have been feeling a lot better, I’ve been starting to wean myself off tramadol but I have had blood recently from the behind. Now, not something to immediately go running to the doctors with, but certainly something to monitor. Dr Hainsworth did say to me in my consult with him at the start of January that it could be months before I am properly healed. It wasn’t running blood but again, something I will monitor. Kerry had her lockdown Birthday. We had cake and a takeaway. We’ll do something better once we are in the new house and the plague is over.
Rupert, well he’s Rupert. I still think he thinks it’s great that mum and dad are home all the time. Kerry’s always worked from home but having the both of us around is a bonus for him. Twice the love.
I hope you are all safe and keeping well. That’s all I have to update you all on. I expect to hear from Lloyds homecare about starting chemo this week or next, it’s super quick when Dr Pedley puts the request in.