Today was a trip to a completely different hospital following my referral from my consultant after the MDT team said I needed radiotherapy. Where I live is on he boarder of a few different health trusts so I'm Now being handed over to the RBH hospital. It's actually far easier for me to get to, but I was a little wary of having to meet a whole new team of people.
The clinic was held in the ENT outpatients, and seemed very busy. It started the same as any pre-ops I have , the excitement of being called quite quickly only to be told- we just want to weigh you! I was surprised how many men seemed to be in the waiting room, and I was definately the youngest patient by at least a couple of decades! When I was called in it was quite a full house as there were two students there too, a trainee nurse and doctor. The consultant was fab, and having the students there was also interesting because she was explaining things to them about my case that I kind of already knew but she explained in a different way. She explained about my margins and how in one part the distance between the last sign of any cancer was small and that was why they were recommending RT. She also said that my type cancer was low grade, because it had been there for such a long time before I'd contacted anyone about it. She said there was a tiny chance that is was a secondary to breast Tumour, but because the PET/CT scan was clear, and it had been there so long that was highly unlikely, but that's why they are sending me for a breast check too.
Then she went onto explain about the radiotherapy. That conversation is like a bad news train. You sit and listen to all the things that could be side effects, or could happen, and are also told, in your case, there's the possibility we could leave it and everything would still be fine, but we can't say for sure! So we're still catching this bad news train and I'm preparing my self for the increased pain, soreness, red skin, ulcers, occasional hair loss, loss of taste, swollen tongue, poor speech, stiffer neck and increased Trismus! Whoopee get me that ticket where do I board! Otherwise who knows where this journey takes me, I want to catch every train that's makes the destination as sunny as possible.
She did explain that everyone is different, and my treatment will be very directed at a small area around where the tumour was and not all over my neck as nothing was found in the lymph glands. She also said as far as Work goes, she was all for people carrying on with some kind of normality while they could. I explained that at work we have set up an arrangement that will allow me to work while I feel up to it, but has someone to step in if I can't. So we are going to try and arrange the RT for an afternoon so I can work until lunch then head back to the hospital, which is between me and work. I'll try this and see how it goes. I won't push myself to do anything my body can't cope with.
We also talked about stiff neck neck and the Trismus ( reduced jaw opening) and she advised doing some Exercises ( links to these in previous post) now because as the healing continues the scar tissue forms and the RT will most likely make everything stiffer so the more movement I can recover before it starts the better.
So a busy day, I'm in no doubt the next stage will be tough, but this group and the other blog posts do really help me to prepare for it. Thank you to everyone. ( I also apologise for the fact when I type In my phone there appear to be no paragraphs ! I'll look into that!!!!edit update - on an iphone no paragraphs, when I edit on the PC I get the paragraphs so I'm going back to do the others!)
