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.
Think Dani aka Beesuithas covered most things ,as treatment progresses make sure you have been given painkillers as often it’s a weekend when the pain Ramps up usually from week 2/3 onwards .Your hospital should provide you with a nebuliser which I found invaluable for mucus which is a common thing. Try and get baking powder in as that combined with salt and water make an effective mouth cleaner as well. Lip balm I found my lips went very dry I used burts bees from Holland and Barrett ,plus ask yiur radiotherapy team what they recommend for moisturising your neck again different trusts have different rules mine was only us what they prescribed.
good luck keep in touch
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer
T2N2NM equals tumour size 2-4 cm several affected lymph nodes 35 radiotherapy 2 chemotherapy sessions.
Thanks Dani and Hazel, will pinch some lip balm from my daughter she has a bit of an obsession, I think they mentioned using regular E45 for the neck, I might speak to them again about it as I have psoriasis and sun burn usually brings it out, hopefully RT won't have the same effect, maybe diprobase (got plenty of that).
Ive ordered a soup cookbook, so hopefully I can blend if still able, lots of cream for calories.
Diprobase is what I was given and as you are familiar with it already that’s probably a good one to use. I found it a tad too heavy and used Cetraben instead. E45 has alcohol in it so not the best on inflamed skin. I used pure Aloe Vera Gel straight after every RT session. I slapped loads on in the car on the way home. My skin did get very red and scaly/scabby but didn’t actually break. if you get a really bad reaction your radio team will give you something like Flamazine which works wonders but as it contains silver you get it when your treatment is finished.
Pamela just a quick note check the lip balms don’t contain petroleum jelly has that can burn during treatment , I used natural one s is the burts bees from Holland and Barrett
Keep in touch good luck with the soup be careful if anything with tomatoes as the acidity will be too strong for your mouth is a few weeks time when treatment has started
Glad you said that, all of my daughters are Disney princess ones so probably not appropriate (she would be cross too).
Im struggling at the moment with tomatoes which is really upsetting, since this started I've had terrible heartburn and silent reflux and tomatoes are terrible for it, they are my all time favourite and I have them everyday with everything (strangely not tomato sauce though, don't like it, more of a brown sauce person, probably because I'm Scottish, are up with HP and Irn bru, hopefully RT won't affect my Irn Bru habit.
Well Im on first name terms with the amazon delivery driver now, so will go order some Burts bees lip balm and some aloe vera (thanks Dani), We should have been in Tenerife in April, where I usually buy a load of aloe vera, but obviously that was cancelled.
Do you know if Elizabeth Arden eight hour cream is any good, either the lip balm or the cream, with my job I used to travel a lot and its one of those things I used to always pick up at the airport
Pamela. im making some lip balm with all pure organic ingredients and our own bees’ wax. If you PM me your address I’m happy to send you some.
Is it perfumed?
I was advised against all perfumed anythings during radiotherapy and Simple moisturiser was suggested by my Macmillan nurse. Although I am aware that hospitals everywhere seem to have differing opinions on everything...very confusing.
There are essential oils in it so yes it’s perfumed. I used them no problem during RT. Just made sure I had nothing on lips face and neck while I was having it
Hi Pamela could be too perfumed save it for after treatment to pamper yourself .the Elizabeth Arden stuff .
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