I've been trying to write an up to date blog for weeks. I keep writing stuff then deleting it. Probably sums up my mood at the moment...bit up and down and all over the place!
I had a really lovely phonecall the other day from a friend who I haven't seen for a while and she's inspired me to get writing. I've met up with friends, had some great days and evenings out and I'm loving having my new dog, so I shouldn't really complain.
Nothing much has changed as far as the cancer goes. My last scan didn't show up anything new and there was minimal growth in one of the lung mets and the other is still stable. Compared to a lot of people with Stage 4 cancer it's a brilliant position to be in. It's still an incredibly difficult situation mentally though, it's a real head fuck , excuse my language. I've got cancer growing inside me, just lurking there and cure isn't in the doctor's vocabulary. I do feel like a ticking time bomb. No one, not even the most experienced oncologist, surgeon or nurse can tell me how long it will be before things change. It's really hard to put it to the back of my mind. I feel like I should be grateful that things are stable and I'm able to carry on with a relatively "normal" life at the moment but sometimes I just feel scared, pissed off and not very grateful at all!
I've seen how quickly things can change for people in my situation and it's frightening.
The most frustrating thing is not feeling in control of the future. I guess nobody is really in control of their future but it's still bloody hard to deal with. If there was an end to it all maybe it would be easier. "Have this done and you'll be be better and can move on". That isn't something I'm going to hear. I try to keep positive and there's always hope that there'll be some new treatment or something that will stop the cancer in its tracks. It's just hard when there's no real plan to move forward.
I feel ok at the moment. Sometimes I get ridiculously tired, sometimes I struggle with my back and sometimes I have to really push myself to do anything but I do try. I have had a few really bad days. I find myself waking up at silly o'clock in a panic. I feel like I should be doing things and making the most of life. Mostly I do but there have been times lately when anxiety and just tiredness gets the better of me and I end up missing out. Then I feel like I've wasted a day and get frustrated about that.
I'm not going to have back surgery now. I don't want to tempt fate. It's a huge op with a long recovery time and even though it's not great I'm managing it. It's been put off so many times I think maybe it's not meant to be. It does affect me on a daily basis but I just get on with it. I still probably do more exercise than a lot of people. If I didn't have cancer I'd definitely have it done but after a long discussion with the surgeon we decided to leave it. I don't want to spend time in hospital or be out of action for months when I don't know what is happening with the cancer.
My thyroid levels are within the normal range now (well they were a month ago) and I'm going to stay on a maintenance dose of medication to hopefully keep it in check. The first Endocrinologist I saw was pushing for me to have a thyroidectomy but again I'm not going to have an operation unless it's essential.
So where am I now ? Fuck knows. Back in limbo land!
My oncologist says he can't do anything for me at the moment and I went to see the lung specialist in London again and he said he could operate and remove both lung metastases (yay) but that there's no evidence that doing that would make any difference to my length of life ( oh 😣). He wouldn't say that he would be operating with curative intent. It would mean two operations as they can't do both at the same time. He was very nice and quite positive but not exactly enthusiastic. It's all ifs and buts and maybes. We asked about something called Cyberknife ( a type of radiation) and he said why not! He referred me to the Royal Marsden. I don't know what's happening there yet as I've been referred back to Colchester to a radiology oncologist.
I had a PET/CT scan last week ... I'm assuming to make sure nothing else is lurking before any treatment. I have no idea how long before I get an appointment or any results. Waiting for scan results are always the worst. I hope it won't be too long. I don't want that hanging over me over Christmas.
So, once I've seen the radiology oncologist I'll need to make a choice....
Do nothing yet, have chemo, have lung surgery or get my lungs zapped! It's hard to know what to do when no one in the medical profession will advise me either way. When I asked my oncologist what he would do in my situation he said that wasn't a valid question, same with the surgeon and the specialist nurse. They have no answers.
It will be my choice. I guess I'll have to wait for the scan results and see what the radiology oncologist has to say then make a decision.
On the positive side I've got plenty of things planned to look forward to. I have amazing friends, family, a great hobby and my dog ... so not all doom and gloom.
