Hiya, I’ve been hiding from the blog as I really haven’t had anything to update.
Back at the end of the year when they told me another chemo had stopped being effective and therefore I had to come off it.
It really took the wind out of my sails. I knew I needed to have recovery time and I was ready for that after damn near a year of treatment. So I took the remainder of 2022 off and…well. I recovered. There’s not really much to say. It’s a great feeling having hair back. I am full of strength. I can help around the house and well, then it started hurting again, but this isn’t new. This is something that began hurting in the spring of ’22 before I even started on the protocol they had me on at the Bobby Robson centre.
Well, it got worse and worse until I am pretty much house bound as I need to be within feet of a toilet nowadays due to me getting seconds of warning that I need the bathroom and well…
Let’s get something scheduled in with Dr Pedley eh?
I saw Dr Ian Pedley (He heads my Oncology team) early Jan time, we agreed it was time for some scans. So he arranged for some scans over the next week and an MRI and a CT scan later. Kerry and I went in to see him for the results.
My mindset was already that it wasn’t going to be great news.
Every. Single. Part of this sodding journey has been bad news in some way or another I was already prepared to hear bad news. I know I don’t feel right down there, I have to be realistic.
Ian *(Dr Pedley) explained that from the scans, the tumour in my bowel is active again, it’s pressing on and has now started eating into the muscle tissue. This would explain how I have little to no warning of a movement coming but more than that, the pressing onto the area explains the constant feeling of needing to go.
He also explained that the metastatic cancer in my liver has doubled in size, whilst still quite small. We need to act on this. The mets in my lungs have progressed in size but nothing was brought to my attention about a specific met or lobe of my lung running rampant. (small win there)
What he was starting to go into was my treatment options but I had a lot of questions and I needed to get it off my chest that I was miserable with the pain and the constant bathroom trips. I was explaining that I can’t sit for long, I need to be up and moving around but then that causes the need for yet another bathroom trip.
I brought the idea of a defunctioning stoma resection for myself, as Ian was explaining the need for Targeted Radiotherapy as it really worked last time. I explained that unless I go for the operation, I simply cannot go through what I went through last time in radiotherapy.
It was the single most painful experience of my life, the tissue (let’s face it…that’s some sensitive fecking tissue here) was just ripping open with every bowel movement and no amount of tramadol and morphine made a single bit of difference. I’m not having the neighbours hearing me screaming in pain! (Multiple times a day).
I had asked if it were possible to go and discuss removal of the cancers. Ian explained that due to the area, such an invasive operation would not only take very long time to heal from but that the surgeon, whomever that may be, would have to cut through the cancer, you won’t find a surgeon in the land that would want to agree to do the operation as you leave one tiny part behind and it just comes back.
Ian said, though he’s sure I could pay for an overseas surgeon to do it but not recommended.
However, if I am not going to be using the part of my bowel, as you’ve ‘defunctioned’ it. Then shoot it with all of the radiation you want. I’m hoping that it will make the radiotherapy all the more tolerable.
Ian also explained a new drug has just been approved by NICE called Regorafenib. (Say: Reg-a-raf-nib)
The drug is receiving great feedback and positive results and as I haven’t had it yet. I’m excited to have something to try and help.
Again, finding out that you’re essentially not being helped by the chemo after all it does to you. It’s just…
I left the meeting and went home to go through the anger stages etc. I took a couple of days to process it all. However, it’s a plan.
Is it a good plan? We will see.
I received a call from a surgeon’s secretary in the R.V.I. hospital in Newcastle. Could I come in today for a meeting with Mr Peter Coyne. Kerry and I are just about to leave to go and hear what they have to say.
I have, as you can imagine, quite a few questions.
So if you have questions, please ask. Your messages of support are always welcome, so from both Kerry and myself.