82. Another 6 week check up

Today is the eclipse, the first one in 27 years they said on the radio this morning in the car as I headed off to Addenbrookes again for the next 6 week check. After the one on 1st July where I was told NED this is now going to be a very routine 6/8 week thing where they do a quick nose cam and ask if I have any issues. I told the wonderful Mr Amen, yes I got to see my favourite ENT surgeon again this time 😍, I am having the all the expected side effects but its nothing that wasn't expected. The eating, soreness, and swallowing all very much governed by how dry my mouth gets, and that's governed by weather, activity, even how much sleep I have or haven't had, so the severity of it all is very fluid. But nothing too un bearable and nothing I felt the need to gripe about all things considered. I did mention the horrendous hot flushes have returned! I had been experiencing extreme flushes for about 4 months prior to my diagnosis, and when finally they told me I had cancer they also said the flushes couldn't be anything to do with my cancer as it wasn't a hormone driven cancer. 🤔 But the weird thing is, when Mr Amen removed my tonsils and the cancer tumour held within, in October, the flushes stopped immediately! This could have been coincidence, as obviously by October the warmer weather is dying off, it could also mean that my thyroid that has been very iffy for over a decade calmed down once the cancer and my throat was operated on or it actually could be that as usual I'm 'special' and the cancer, be it a non hormonal one was actually causing the flushes after all. No one knows! But sadly the hot flushes, have come back over the last 6 -8 weeks and are raging. Again this could be to do with the weather and I just am unable to regulate my own body temperature that well, or it could radiotherapy has added more load to my thyroid ( so I have had a blood test today for that) or, sadly as I keep laying in bed at night silently going over in my head, that it was the cancer causing it, its back, and they just haven't spotted it yet. All this was discussed today at my check and Mr Amen confirmed its something he takes very seriously, if its bothering me, its bothering him! Hopefully we can find an obvious reason in the bloods he's doing, and he assures me from my pet scan he is as completely sure I don't have any cancer left, or as sure as he possibly can be.

So that has sort of put my mind at rest, but I still think I will lay wondering if its so small atm they just can't see it on the scans yet, lets face it, they couldn't see the original cancer on a PET scan or from 8 nose cams so, that's not really very reassuring is it? I suppose with having to go every 8 weeks as soon as it is detectable, they will see it, but it feels like the NED is not NED, its just well we can't see anything, but you never know! So for the time being, I'll just have to enjoy my time between appointments, turn up the air con and hope for the best.

UPDATE the results of the thyroid bloods are through on my app already and it shows I am subclinical hypothyroid, my TSH levels are 23.24 and the normal range is 0.35 -5.5 . This basically means my pituitary gland in my brain is having to produce 4 times the amount of thyroid stimulating hormone ( TSH) to get my thyroid gland to provide my body with enough thyroid hormone ( thyroxine) so my body can function. thyroxine is basically the chemical machine in your blood that runs everything your metabolism, your heart, your digestion, like putting petrol in a car. So my thyroid wasn't brilliant before I have a history of being autoimmune thyrotoxic when my thyroid gland was producing too much thyroxine, this stabilised when I stopped eating gluten due to its inflammatory nature, and the fact the immune system can confuse gluten and thyroid tissue and attack your thyroid gland if you have untreated gluten intolerance. Now it could be its just found its time to total collapse after years of not working right or it could have been finished off by the radiotherapy. Who knows????? but its an answer to hopefully some of the reasons I feel so horrible, the flushing, not being able to eat more than a very low calorie diet without putting on weight, leg and arm pain/weakness, waking in the night and leg cramps, generally not feeling great and a little bit underlyingly depressed ( and not just cos I've just had cancer treatment) So now I'm waiting to see what and who I will be seeing about that, Mr Amen is an expert on thyroid as well as head and neck cancer ( another reason I chose him when i researched for a private consultant) so hopefully he will refer me to himself but in a different department . fingers crossed .