Hi Everyone, thanks for stopping by and reading.
Well this isn’t going to be an easy one to write as it’s not good news so I should say prepare yourselves.
Today was supposed to be chemo as I was in for blood tests and a CT scan yesterday but it didn’t go ahead. I was waiting around for an age today. It’s usually slow on chemo day and I’m just glad Kerry had to stay home today so she didn’t need to endure it (we had our solar panels to be serviced and had to have a new inverter fitted)
However, as I say. It was especially slow today at the Bobby Robson centre. I think I was there for a good 2 hours before I got to see a doctor.
This in itself was strange as I don’t usually get to see a doctor until I have had treatment but then, I was receiving CT scan results so I actually didn’t give it more than a moment’s thought.
I got to see ANOTHER new doctor at the Bobby Robson centre for cancer care today. Don’t get me wrong, he was lovely and probably one of the best I’ve seen there but the meeting went ahead as they normally do. How’s you? How’ve you been? Anything new to tell us? blah blah blah.
I didn’t realise he was buttering me up to tell me something. I made myself look a right arse too.
“So c’mon, tell me. My cancers have grown up to 10% and let’s crack on with treatment….”
Nope, not even close.
“We’re not going to be going ahead with anymore treatment as part of this trial I am afraid. The CT scan showed some new lesions in my lungs and a speck on your liver but that’s preventing us with any further treatment.”
Oh, now as you can imagine, as Kerry wasn’t there with me and because I didn’t record the conversation, I’ve most likely forgotten what was discussed as I didn’t take in anything more after he delivered the news. I doubt any of you could blame a guy for that.
They will put me back into the care of my oncologist Dr Ian Pedley and he will probably want to discuss oral/palliative chemotherapy with me going on.
They would also like to put me forwards for further medical trials, however I should have a break for a couple of months (which would be welcomed)
I asked about the new lesions and sadly, typical NHS not being able to provide me with the information. When asked, the radiotherapist told the oncology team “a few”.
Now, that doesn’t help me at all but under Dr Pedley. I’ll be able to get a hold of those scans as I will be needing them for future plans. The spot on my liver is a speck and this may not even be cancer, but I also do not kid myself.
The thing is, I most likely do have cancers in my body that just aren’t big enough to see. It’s only when they become big enough to be seen on CT, MRI and PET Scans that they can be counted.
You’ve got to think that all cancers start on a molecular level, they’ve got to mutate a cell and grow so I understand it.
Can’t exactly say this is the news I wanted to hear, nor deliver to you all but it’s all I know.
I had some final metrics taken, urine, bloods, ECG’s etc and I was discharged from the Bobby Robson centre and told they’ll be in touch but that’s the way things are with them. They’re all lovely people and they provide great care but they’re not your doctors and nurses. They’re delivering a drug on a trial to you. I’ll miss them all as I’ve built some great relationships with them but I have to remember, I am the guinea pig, I am there for them as much as they are for me.
So as for the results. I’ll be getting some paperwork through in the next week. I’ll be seeing Dr Pedley soon no doubt. I’ll get more from him. Time to go back to the ol’ chalkboard.
So what’s next? Well. I’m still going to be cracking on with the turkey tail mushrooms to help boost my immune system. There are some others to look into too but it’s all money. I won’t be on steroids anymore so I can crack on with my weight loss. I’m already down 5kg in a month which is amazing but let’s face it. There’s a lot of water weight there. Consistent slow weight loss.
I’m going to want to be exercising a lot more when not on treatment and I won’t have the chemotherapy aggravating my already aggravated bowels. Hopefully, I won’t need to take pain killers etc.
Hair, oh I am so looking forwards to having hair back, I may even grow my beard back. Who knows?
Kerry does this thing where she just goes into planning mode. Now I am not having to receive treatment, we can plan a holiday, we can plan some trips but she has been looking into alternatives to the therapies available in the UK.
Dendritic cell therapy. This still isn’t cheap. I could be worthwhile cashing in pensions or life insurances for. May even look into a GoFundMe or something (£7,000-30,000 depending on what they say)
There have been some brilliant results being shown out there on the interwebs. No, not in the UK of course.
So this is where we are at. I need some time to process this myself. Not exactly what I was expecting to hear today. I was expecting to be on chemo and feeling sick as f***.
I could murder a spliff that’s for sure.
One thought on “The trial over – Results – Why’s and what’s next?”
Sorry you haven’t had better news. Very hard to read, and harder to write I’m sure. I know the research you’ll both be doing will be expansive, but let us know if there’s anything the rest of us can help with. It sucks to hear you might have to go outside the UK to access treatment, you’d hope that we’d be able to get people to valid treatment wherever it may be. It’s hard enough without having to contemplate (and pay for) travel and all that! But we’ll help in any way we can.