This is from a retrieved blog from six years ago. I didn’t write any more blog entries after that, didn’t document surgery or radiotherapy. But this gives a snapshot of someone going to a multidisciplinary meeting and getting the treatment plan.
“Finally have my surgery date: 18 February – and a little more info about my condition. The CT scan seems to have shown an actual tumour, still small at T1, (1 cm or under) but there are some “shiny nodes” – small and round. From my research I know that small is good but round is bad – they should be oval. I’ll have to wait till a week after the op to find out the results; will have to psych myself up for less than optimal because that is how this whole thing seems to be heading.
In spite of the nodes the surgeons think it’s fixable. Maybe that’s because I’m to have radiotherapy 6 – 8 weeks after surgery. A biggie. Apparently it’s a painful process with the mouth.
It was all very rushed at the hospital because they had a backlog after Xmas and because my main surgeon (not the one who took over and did the surgery) seemed to want to gloss over it. He said my case was “easy” to fix compared with some others. He told me that the radiotherapy was to stop cancers growing on that side of my mouth. When asked he said he didn’t think the cancer had spread to the nodes. Not 100% reassuring because he seems to be quite defensive about my cancer and determined to play it down. He didn’t even tell me I had to have a marginal mandibulectomy, meaning a shaving off my lower jaw bone to get clear margins from the tumour that abuts it. A couple of teeth will come out because the flap for reconstruction will cover the gum. All this came from the registrar. Although the surgeon said “it’ll be easier than last time” it’s hard to believe that when my flap will come from my right wrist which will have to be splinted, meaning I won’t even be able to write properly after surgery. Even if I don’t have a tracheotomy I no doubt won’t be able to talk for a while!
The tone of the visit suggested to me that they saw my case as small fry compared to the big op someone else was having. I saw a couple holding on to each other in an opposite room and I wonder if one of them is having huge surgery, making mine seem slight. I have the utmost sympathy for those people but my case seems big to me. It’s reassuring that they see my case as routine though … I have to be grateful for mercies like that.
I’ve been pretty good psychologically which just goes to show that knowledge is power. I was bad when I was left hanging for 5 weeks over Xmas. Now I seem to have my courage back, or my philosophical attitude. According to what I’ve looked up I’ll be sort of out of action for three months from surgery: they say the optimal time frame for surgery plus rads is 100 days. That will take me to the end of May …. (The surgery was ghastly and led to a severed nerve as the surgeon had to cut through scar tissue to get those lymph nodes out but was not as bad as the first time. I recovered quickly but had to go back for a top up op to get clearer margins (awful) and finished radiotherapy on 19 May 2014. The RT wasn’t too gruelling for me after the horrors of surgery and because it was confined to further forward in my mouth and didn’t affect my throat too much. )
