The last few weeks have been horrendous. I've been let down so badly it's unbelievable and it's really messed with my head.
One minute I was feeling so grateful and happy and the next I can't stop crying and feel completely overwhelmed by it all.
After my last scan I was told everything looked clear apart from a lung nodule that had grown since the last scan, so I would have a follow up in three months. I then received a letter saying that if the nodule on my lung remained stable after the 3 months I'd be treated for a presumed lung metastasis.
I wasn't happy with that. If they were presuming anything why wait for three months? Why wasn't I told about it if it was on the first scan? In the end they agreed to have my scans reviewed by a lung specialist.
I had a call from the respiratory consultant to say he'd looked at my scans with two thoracic radiology consultants and that the nodule was in fact a benign pulmonary lymph node. He said he was 98% sure. I received a letter stating that it was benign and nothing to worry about and there was no reason why I couldn't have my back surgery.
I was over the moon. Celebration time!
Because of the cancer they decided to put my back operation on hold. I have a severe spinal stenosis and the only way to cure it is surgery. That was the reason I went to my GP in the first place a year ago. I lose the feeling in my legs and its painful to walk. It's not life threatening and I can still get about (even though it's really uncomfortable) but it does have an impact on everything I do, every single day.
Getting my back sorted would mean another huge step to getting back to some sort of normality.
Less than a week after receiving such good news I had another call from the respiratory consultant to say they'd looked at my scans again and that there is in fact a possibly cancerous nodule....what the fuck ? How can they do a complete U turn when they were 98% sure? Why would they even look at my scans again after they'd sent the letter out? It's all bullshit as far as I'm concerned. Some things just don't add up.
So now they've discussed my case with a lung surgeon who says it's too deep to biopsy and if they remove it they'd have to take half my lung away.
The next step is a PET scan within the next 2 weeks and take it from there. Obviously my back surgery will be delayed yet again.
It's a real mind fuck. Sorry about the swearing but that's how I feel at the moment....pissed off and pretty down.
I don't know what I want to do about it all but I'm finding it hard to trust anything that's said.
Its been a whole year of being told different things by different people, being fobbed off and endless waiting.
Maybe it's my own fault for wanting to know everything, for researching everything, for wanting to have a say in my treatment...maybe I should just go along with whatever I'm told and not question it. Ignorance is supposed to be bliss isn't ?
