Sinister Neck Lump and Mutant Tonsil

Hi

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.

Thanks

Pamela

  • Did anyone use Complan, I know its a bit old fashioned but Im struggling to eat even now, they think I have an infection on the tumour on my tonsil, the other tonsil is fine but my ear, jaw, sinus, head and neck are all really painful, head feels like its swimming, hitting the painkillers early, and the antibiotics as don't want anymore delays to treatment.  

    Pamela

  • Poor you that sounds horrid. Complan is not nutritionally complete. Ask your GP to give you Fortisips or Ensures on prescription. If the practice won’t ( expense.... and some GPs are bad at that) get your hospital team to request that your doctor does. The shakes provide 2kcal per ml and come in 200 ml bottles. Lots of different flavours. 
    Meantime I have half a dozen just expired Ensure sachets you make up yourself if you would like me to post them. 

  • Thanks Dani, that explains why I've not heard of complan for many years, I've ordered some fortisips and ensure compact, the only flavour I can tolerate is strawberry, though this might change when the treatment starts. I found the chicken complan and thought that might be a solution.  

    Ive always avoided milk as its not good for my psoriasis and I don't like the taste but I might try it again as its not an allergy or intolerance, yes I would appreciate the expired ones if thats ok, date doesn't make any difference with dried food so should be fine.  Thank you so much.

    What about things like ovaltine are they any good, also trying to get a selection of fruit teas, avoiding the generic red ones as they all taste quite tinny.

    Pamela 

  • I've used Complan for breakfast for six years now, still can't get anything solid down without choking first thing.

  • Pamela Don’t order too many get the dieticians involved or dr I still get mine vis G P admittedly I had to involve the  CCG to starts with as g p wouldn’t prescribe them even though it came from dieticians.

    I don’t use many but have them as there’s stilk days when I have a bad eating day,,

    re teas u haven’t had proper tea in over 20 years I use peppermint misty or liquorice but inky one a days as can raise b p .yiu could try chamomile personally I don’t like it. There’s de caff coffee as well

    Hazel x

  • hmm the liquorice one sounds intriguing, will definitely try that, chamomile I don't think has much of a taste, found a really nice apple and pear which I didn't like at first but has really grown on me.  Ive never drank coffee before as I'm scared it will make my heart race too much (causes me to pass out with POTS), I like caffeine free tea but was worried that the tannins would be an irritant, think I read it somewhere on here.  Raising my BP would be a great thing as its currently very low which is part of the POTS problem.  Its one thing I want to check with the chemo nurse as Im not sure if chemo might drop my BP.

    Pamela x

  • Hi

    I was told to avoid caffeine during my treatment. I think it might have been because of the chemo, I can't remember sorry. Just as well I was already drinking Rooibos tea. I never had any problems with it irritating but, did find that I had to let drinks cool quite a bit as too hot was uncomfortable.

    All the best

    Tricia

  • Im meeting with the chemo nurse next week to go over things and have bloods taken so will ask her about caffeine.  I have to say I only once had rooibos and i did not like it at all, I could taste it for hours after - I was pregnant at the time, so not sure if that was why

    Pamela

  • Nualtra Food link complete.

    During my wife’s 6 week high dose radiotherapy to her head and neck following parotidectomy, the above liquid food mix was prescribed by the hospital and subsequently her GP.

    it was all she had for a couple of months.

    it really did save the day...

  • I had a call to say they will do my PEG on Thursday afternoon, they will keep me in for 72 hours after which was a bit of a shock, but at least its getting done so less worry about fluids and my consciousness. Readyish to start treatment Monday, its all becoming a bit too real!!

    Pamela