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.
Thank you all for words of advice and encouragement, Im afraid I just felt so down I couldn't see the wood of the trees, I have learned so much more from you guys on here than I have from the hospital, but I will do what I need to in order to be cured.
Thanks for the update. I was going to reply earlier but thought you may not have had time to get in touch with people. Pleased you've been able to make some progress with support during your treatment.
My parents telephoned Tesco as they could not get a delivery. They were brilliant and sorted out deliveries for them which arrive every week now so it may be worth phoning them, especially since your GP has got you onto the vulnerable list.
Hopefully your neurological team will be able to sort out a PEG for you or at the very least an NG tube. It sounded very flippant of your ENT to say you would be able to eat ready meals. In all honesty I'm not sure you will once the rt starts to make itself felt so it will be vital to ensure you have the capability of taking on board fluids.
I think it's a good idea to get to see a dietician so well done for requesting that and also for seeing speech and language for exercises. My team ensured speech and language were heavily involved (and still are) even before treatment so I could start tongue and jaw exercises to make them as strong as possible.
Unfortunately I think you've probably had to fight so hard for the support services due to Covid.
As for the treatment, many hospitals seem to have their own protocol as to what treatment is offered and how it is given.
I really hope you're able to get all your issues sorted satisfactorily. Do let us know if/when you need any advice or support. People are only too willing to help where possible.
All the best.
great that you can find at least some solutions
no spread is all that you should really care about and the rest is as it is unfortunately
standard regimen is 3 x 100mg/m but now they also do 5 or 6 times in lower dosage they hope it reduces toxicity
Thats good you've made some progress, unfortunately lots of us have had to fight for different things general over time.
Regarding chemo it’s uo to each different hospital and in some cases even different oncologist s within same hospital , some do 6 smaller doses weekly some do 5 doses in my case it was planned for doses on day 1 days 21 and day 35 so 3 largest doses there no right or wrong way.
Try and enjoy the time with your children and try to maintain or increase your weight if you can.
best wishes Hazel x
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 for reminding me Hazel, that was the other piece of good news, I have managed to maintain my weight over the past 10 days. Im going to have a few beers over the next few weeks as it will probably be a long time before I can have any, that should be good for the weight. I better check they are still in date, as they've been there a while.
Baking with the kids this weekend, something really calorific
I’ve just been reading through all your posts and the lovely positive responses.
I’m so sorry for the situation you find yourself in but you sound like a very determined and strong lady that will get through this.
I know exactly how you feel with regards to feeling let down and almost forgotten about especially as this is your first and hopefully last time going through treatment. We look to the professionals to give us support in every aspect and having to fight for this is simply wrong!
My lung nodule was discovered in February and I too had letters that said completely different things so I understand your comment about trust.
It is purely down to timing with this COVID situation as I couldn’t fault the hospital on my previous cancer x 2 for H&N.
I have only just got the ball rolling now and this was with a fight as I’m in between 2 hospitals each saying the other should have been doing scans etc. I’m now booked in to have a PET/CT scan on Wednesday- 4 months of anxiety. I wonder how many other people are having to go through this.
Thank goodness for the support on this forum!
Wishing you all the best with your treatment and hoping it won’t be too gruesome for you.
Thank you for saying such lovely things Little-Fi particularly when you are full of anxiety yourself. I spoke to a friend of mine who is a consultant, I told her some of the things that the registrar said to me, her opinion made me laugh and may well be accurate, she thought he sounded like a first year registrar who's head was so far up his own rear end that he didn't want to ask his consultants opinion so gave me really flippant and dismissive answers to my question. She thought he had probably chosen the wrong specialty.
As I have said before I have learned so much from this group, much much more than from the hospital, this is partly due to covid as things have been so disjointed and not the normal process that they would follow. The oncologist I met had no idea of my other health conditions and wasn't really interested in listening to an explanation of how it would affect me, autonomic dysfunction can have a major impact on my outcome, I have learned to manage it 90% of the time but it still takes me by surprise at times. I have fought so hard with social services to keep my children with the risks involved and Im terrified of the consequences of treatment. I know I have to get through it, and I will, but I keep having to remind myself that it is ok to be frightened (and normal).
Baking chocolate cake helped a today.
Fingers crossed I really hope the PET scan goes well on Wed and the nodules are gone, you have been through so much
Thank you Pamela, unfortunately it won’t be gone. It was confirmed already with a biopsy that it is cancer but they didn’t follow up with a PET scan which the consultant I’ve been referred to was disappointed with slowing the whole process up. Never mind, it’s being dealt with now.
I’m sorry you have the added stress with care arrangements for your children but it sounds as though you have little choice. I would not have got through looking after 2 young children so I think if they’re well looked after at the seaside this will speed up your recovery as you can just concentrate on making yourself well. My heart goes out to you.
Im trying to prepare as much as I can, if thats even possible, I've got the toothbrushes, humidifier and xylimelts in but was wondering about mouthwash and / or toothpastes, are these things we have to buy ourselves or are they prescription only, any recommendations?
Ive had my mask and tattoo and my planning CT, though without contrast, so they have to use my PET scan instead. Treatment has moved for the 5th time, back to Royal Berks but they have said it could change half way through depending on the chemo and covid.
Apparently they have agreed to give me a PEG but Ive not heard anything from them as to when, still plenty of time, due to start 6 July.
Are there any other recommendations, hints or tips as I'm on my own I won't be able to get out to pick up anything so want to get as much in as possible while I'm still reasonably well. I managed to get a supermarket delivery yesterday, which was wonderful, order lots of ice cream and ice lollies which I don't normally eat but trying to get some weight on.
at least there is some solidity to the plan
Mouthwashes should be supplied by the hospital. You should get most things to start with from the hospital pharmacy then the scripts will be sent to your GP. Biotene is the standard. Soothing and emollient. I found Caphosol very useful. Not all consultants will prescribe it as it’s expensive and efficacy in doubt. It’s best used right from the start so see if you can get it straight away. Gelclair is good for ulcers and you can use biotene gel at night to moisturise your mouth. Difflam mouthwash is antiseptic and anaesthetic and good for swishing round your mouth and throat fifteen minutes before you eat. Sometimes it can irritate so you can dilute it. it can help rinsing your mouth in sodium bicarbonate and salt. A simple home remedy is often just as good as fancy stuff. It’s trial and error
The standard one is Duraphat which is high fluoride. I can’t use that even 16 months on as it plays havoc with my throat so I use unflavoured SLS free Oranurse
That's a start for you
See if you can get a regular recurring supermarket slot as you should be shielding once you are in treatment
Get lots of butter and cream and add it to soups
See if you can get Fortisips or ensures before you actually need them one small bottle gets you four hundred Calories which is not to be sneezed at
I’m sure there will be lots more suggestions
Take care and look after yourself
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