Hi new here

Thanks Mark (I just saw on another post that your real name is Mark, hope you don't mind me using it, unless you prefer your nickname.)  I will update on here after surgery.  Fingers crossed yours goes well

Hugs

Hazel x

Hi spider

It seems every case and the treatment given is slightly different. I had a needle aspiration on a neck lump which revealed SCC cells but they couldn’t find a primary. Hence surgery to ‘hunt the primary’ removing all tonsils and margins, tongue mucosectomy and a neck dissection all in one go. 3 days in hospital. It was a bit brutal and there were a couple of dark days but I was eating soft foods in a few days. I have not needed RT.

Two and half months on eating is virtually normal but I am still having a few problems with speech particularly given my job requires a lot of public speaking. Hoping some physio will help with that. 

I still have years of monitoring but am focussing in the good recovery/survival rates for this type of cancer. 

Hi Dave

It sounds as if your finishing treatment was very recent?  Things get worse for at least the first couple of weeks.  My advice would be don’t push yourself too hard.  I used my tube pretty much exclusively for over a month after treatment. Swallowing was horrible I was plagued with very thick mucus and everything tasted of cardboard or worse.

it does get better, but it’s slow.  Do you have a dietitian you can talk to about your concerns? Or maybe a speech and language therapist?  I know, it sounds odd, but mine helped me a lot with swallowing…exercises and the like.

Hope things improve soon.
Liz

Welcome to the forum. Loads of friendly advice on here and I only wish I'd been aware of them sooner.

I was in the very same boat - although crazily I never noticed the big lump in my neck, it was my tonsils that led to the diagnosis after a biopsy in March this year. Was confirmed as the Human Papiloma Virus behind it all.

As I was told by the oncologist at the time it's probably the "best" cancer to have in terms of cure rates (90 odd percent) but one of the worst in terms of treatment.

No shying away from it, the treatment is brutal. For the first couple of week's you might wonder what all the fuss is about, but then it really begins to bite. I was 6 weeks of radiotherapy and 2 sessions of chemo, after having 3 teeth removed and a RIG fitted.

From week 3 onwards I lost the ability to eat so used the tube for pretty much everything. Swallowing was near impossible and mouth was full of ulcers and sores. A really difficult time.

Week 6 of treatment I ended up being admitted to the ward at the Western in Edinburgh and spent the final 5 days in there.

I'm now 12 weeks post treatment, and just had my CT scan yesterday with results due on 1st October so getting a bit nervous about them !

It does get better though, believe me. I've not had to use the RIG for a couple of months nearly now and slowly but surely my eating/swallowing is getting better and my tastebuds are more or less back to normal.

The support I had from NHS Fife and NHS Lothian, as well as the MacMillan nurses has been off the scale fantastic, and sure you will receive the same.

Wishing you all the best in your journey. You will get through it

Hi Spider 3

Being scared is natural.  The Big C has all sorts of connotations but we are generally lucky with our head and neck cancers as they are very curable.  The cure is not pleasant and the recovery is long.  However, the majority of us go on to have fulfilling lives.  Stay with us and we will have your back! 

Hi Dave I had the same ,gagging and coughing.Nothing co ordinating.Try a hot drink like Oxo cubes ,marmite.Tiny sips .Even hot water.Its just time I'm afraid but  keep on trying.Im nearly 9wks post treatment and have found my rig a life saver.I am trying different foods now but soups remain  my main source of nourish ent.I have lost most of my taste though it is slowly improving.Things don't taste as they should but that too is better than it was.I

 dhadve had difficulties with the feeds .I think they are very rich for my stomach but again this is making me eAt .Even if it's just a few spoonfuls it gets you chewing .I have foudg that perseverance is your friend.Good luck.

Hi Mark I’m one year yesterday that I had my tonsils removed!! Can’t believe it’s been a year!! This will also be you soon.  
I had lump on neck had fine needle biopsy found squamous cell HPV had scans but like you they couldn’t find the primary so I had tonsils out with. Tongue biopsy at same time.  After surgery my consulant said he was 99% sure he could see abnormal cells in base of tongue so I was then booked in for tumour to be removed on base of tongue and neck disection (they did not k ow how may lympths in neck had C in them) after that operation I was told it had gone into 3 so was recommended to have Radiotherphy! I did 5 weeks of RT.  If I can do it anyone can as I was a complete nervous wreck! It’s completely normal to feel scared but like others have said the treatment is so effective. 

Natalie x 

Hi Natalie 

Thank you for your positive words ,glad to hear your on the mend x

Mark