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Went up to Central Outpatients in plenty of time for my 10.30am appointment as we thought there'd be a bit of an issue with parking. We had to queue to get on the car park. There was a chap with a walkie talkie at the top letting people in one at a time - as someone else left. I did manage to check in at the screen and get my little ticket to take to ENT by 10.20am though, so not too bad.
I'd only got halfway through my "easy" Su Doku when my name was called. I haven't been on a Monday before, but it is the day when you get to see the whole team!
I went in and there was Mr Hughes in his sharp suit, Wendy my special nurse and Ms Gahir, the consultant oncologist, as well as another doctor who I'd never seen before. Oh and Mr Julian of the Awesome Hat popped in too.
Anyway Mr Hughes spoke to me first and asked how I was. I told him about the neck cramps and pain and he just said it was normal. There's less muscle there now and "you have to remember that large flaps of skin and muscle were pulled back as far as your skeleton."
I couldn't actually remember that - as I'd been fast asleep at the time. Anyway, it seems that the solution is stronger painkillers, so the new doctor I'd never seen before wrote me a note to give to my GP that says they recommend that I have some Tramadol. I can supplement this with Ibuprofen if I like.
I asked Mr Hughes if the biopsies taken during the operation had given any further clues as to where the primary cancer had been. He said no - there were definitely poorly differentiated adenocarcinoma cells, which is pretty rare in the neck area. I'm part of just 2% of cancers. Bit of a rare breed :-)
Mr Hughes looked at the scar and said that it had healed really well and I could start moisturising it now. Seems I need to keep it moving and stretched so that I still have movement in my neck. He told me that he had removed 44 nodes from my neck and 23 had cancer in them. So that was quite extensive - although limited just to the right side of my neck. So he was handing me over to the Oncologist for the next stage of my treatment which would be radiotherapy and chemotherapy. I asked if he had taken any salivary glands, as I hadn't had any problems with dry mouth, and he said he'd only taken one small one.
"Here's the lady who's going to give you a dry mouth!" he said cheerfully as he sent me off with Ms Gahir. I was a little concerned at this point as no-one had even mentioned chemotherapy before. Ms Gahir was lovely and looked carefully through all my notes and asked me to take her through what had happened so far. I told her (maybe I should have just directed her to this blog :-)
She said that most cancers of the head and neck are squamous cell cancers, so I am unusual in having adenocarcinoma in this area. I asked her to tell me more and she explained it really well. My type comes from a gland where the squamous ones tend to be linings - like the mouth or nose or lung. She said that they were not sure yet about the chemotherapy. There are many studies into the use of it with the squamous cell ones in the head and neck - but because you don't usually get the adenocarcinoma here there are very few studies into the effectiveness of it with this type of cancer.
If they do go with it they will use Cisplatin, which doesn't make you lose your hair - but is one of the ones that makes you feel pretty sick.
So, to make sure, she wanted to speak to the pathologist who put together the report on the biopsies and also to her colleague. She wants to get the treatment just right for me. "Because you are so young and fit" she said (Yes - she really did say that !! :-) they want to get rid of this and make sure that it doesn't return.
She then had to go through the procedures and side effects so that I could sign a consent form for the radiotherapy. I have aquired a new booklet for my folder "Understanding Radiotherapy" she kept the "Understanding Chemotherapy" one on her desk for now. She said that she would call me back on Thursday or Friday when they have decided about the chemo.
Then I will have to have a special mask made for me to wear while I am in the LinAc (Linear Accelerator) having my radiotherapy treatment. I'll also need another CT Scan (Yay! I liked that one ;-) before they start so that they can target the exact areas. They are hoping to just limit it to the one side of my neck as it is going to make my throat very sore inside and out. It will give me a dry mouth too and swallowing may become so painful that I may have to be fed through a tube into my stomach for a while.
She did say the operation I just had was the easy part - this is going to knock me about a bit. Seems by the end of the six weeks I am going to be feeling pretty sore and exhausted.
The good news is that this should cure the cancer that is still lurking and prevent it coming back again. So it will just be a few months discomfort (did you know that radiotherapy goes on working for 6 weeks after you stop the treatment?) then I should be able to get back to normal!
Mr Hughes said that I will be seeing him then for the next 5 years, so he can keep an eye on me.
Altogether I was in there for over an hour and I'm not sure I've remembered everything that they told me. I now just wait for Ms Gahin to call me tomorrow, with an appointment to see her later this week in the Cancer Centre. Then it will be all systems go...