2 months ago I developed a large lymph node on my left neck, I had night sweats and ear pain but nothing on tonsils, then 6 weeks later developed a small lump on my tonsil, over a week it quadrupled in size and is still growing. Ive had a scan, core biopsy and MRI, the radiologist said at the time, it did not look good but would have to wait for histology on the biopsy for full diagnosis but considering the tonsil mutant, the possibility was they were related. Im hoping to have a face to face with ENT on Thursday to discuss, radiology said on the way out, we will likely see you soon for CT. So I'm expecting more detailed bad news on Thursday. She said none of the other nodes on my neck were enlarged and my thyroid looked fine, but since then I have felt pain under my arms, like a burning and Ive convinced my self that its spreading, Ive also had a lot of chest pain. (I had pleurisy last year and for a few hours I thought this was back, however this got better and left me with a dull constant ache in the middle of my chest, which is probably, hopefully stress). Im absolutely terrified as I have 2 young children and a dog with no one else to look after them. Did anyone have any experience of the cancer spreading, could you feel it? ENT have thus far only seen pictures of my tonsil due to Covid, but have been very good over the phone and trying to organise face to face appointments. Are there any questions I should be asking on Thursday as Im not allowed to take anyone in with me, so just me, my paper and pen.
I suppose it’s easier to keep an eye on your recovery and any discomfort issues
Best of luck. Just shout if you want anything explained or just somebody to scream at. Take one day at a time and those weeks will pass.
My world has been turned upside down again, PEG cancelled and all treatment cancelled as I have tested positive for covid, I have no idea how as we have not been out, I have been so careful and worn a mask everywhere, washed and / sanitised my hands frequently, I have no symptoms at the moment, waiting for them to arrive in the next day or so, they think I am pre symptomatic. Social services are trying to arrange something for my children in the event that Im incapacitated, don't think I've ever been so scared in my life. Till now I thought cancer was scary
Oh Pamela, what a shock for you! I suppose if you can take a positive from this at least they will keep an eye on you and take all precautions to ensure you get timely treatment if required.
I'm pleased arrangements are being made for your children just in case.
I hope you get through this with the slightest of symptoms and can then get back on track to start your treatment.
Wishing you all the best.
Pamela. It will hopefully only set you back 2 weeks. What did they say about resuming treatment? I might seriously think about forgetting the PEG and going for a reactive NG tube. That way you can get cracking. I hope you’re one of the multitude who don’t suffer symptoms. Got my fingers crossed for you
When did you have a test? I can’t understand why the hospital didn’t tell you to self isolate for a fortnight which is what the nhs guidelines are. I hope your team has an answer.
Oh my gosh, as if you don't have enough on your plate already. Hopefully you will only have mild symptoms (if at all) and be back on treatment track soon.
All the very best.
I had the test on Tuesday, they only contacted me re the PEG on Monday but I was isolating anyway, they are now saying 14th July to start, they will keep me in that week and give me PEG, all depending on covid symptoms, in the last half hour my temp has gone from 36.5 to 37.4, which I know is not high but still a jump. Im hyperaware of everything in my body at the moment, praying for an easy ride
COVID update - I still have no symptoms thankfully. They thought i was pre symptomatic, apparently you can test positive 1-3 days before symptoms, Im now 5 days since test, so I either have no symptoms or its a false positive (which is my thinking), Ive ordered another test to be done tomorrow.
Treatment rescheduled for 14 July so now back to the fear that it has spread to jaw and or base of tongue, trying to stay calm as kids are picking up on my fears, not sleeping much at all so getting grumpy too. Ive requested another mapping CT for the first week which they think is a good idea as last scan was 5 June. Counting down the days again.
That will be interesting to see what the second test comes up with Pamela. I wonder how many other people have received false positive results?
Fingers crossed that your treatment will stay on schedule now.
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