Hi John, you hit the nail squarely on the head, compadre! And I have good news to add to yours, as of my weigh-in at the gym yesterday, I've finally regained the 10 lbs I lost in the first three weeks following the loading of my liver with radioactive beads (SIRIspheres,) which was complete on 11/23/13.

When I get a bit more free time, I'll start a thread about this process; thanks for the head's up, Tony!

Effects of the radiation continue to surprise me, but they are mild and mostly inconsequential. Mostly I'm surprised that any of it is lingering this long. I have a CT scheduled for the 21st, and I'll get the results on the 25th.

Hey Tony,

Yes, need to get my head around forums and what where, don't worry about stealing the thread! Sounds like we have walked a similar path, I had a few ops in Aug to Sep...neck dissection, full tonsillectomy, wisdoms out under GA and then sedation for PEG.

Doc said that lot immediately before six weeks radio is a big factor to the fatigue as the body has just been battered for best part of three months non stop. I had the neck met that was more of a worry as it had breached where the tonsil tumour was contained still. But so far so good.

The best thing I did was from the get go stopped everything that was bad for my throat and hit the mouth washes they give so went into this as prepped as possible. All the things the docs and specialist nurses recommend to manage the side effects work well. Sadly, I recall seeing smokers having a puff between their hydration IV and before their chemo infusion...come on guys!

The taste thing recovers quick and as I needed to bulk up have had an unhealthy diet for a couple of weeks as a treat and now getting into much more sensible planned nutrition as want to start training and getting in shape. Have the niggling background fear of course but I guess that's normal.

I am mightily impressed Tony - I am 16 years behind you!

HI ALL

I'm still ticking along - had my April check, month five post radio, month nine from neck dissection and tonsillectomy that removed all detectable disease. Neck is still stiff, funny sensations and sag on chin from lymph drainage that comes and goes.

Looking for work but doors closed that were open a year ago yet am down to fourth and final selection on a couple of things.

Life slowly getting back normal, occasional anxiety and poking neck to much looking for bumps. This is a survivable thing with a short but hard road during treatments.

Feels a long time ago now, or maybe the mind doesn't want to go back there. A key feature is to keep positive and keep as fit as possible and healthy as you can, what you eat and drink, so can handle treatments as best as possible. Some I went through this with had treatment re planned.

Hows everyone doing?

Doing good. Just keep in mind that your recovery can take all of 2 years.

Ditto what dave said. Eventually as time passes any fear will ease somewhat... there's always that worry but it does fade as certain anniversaries pass and you begin to feel better. The neck dissection can mess you up... I'm still stiff though the swelling is gone now. and sensation is returning - slowly though I know it will never be 100% ;o) So glad you are doing well. I am too... ;o) hugs

Great to hear your good news John. Attitude is everything.
Kris is doing fabulously too.
Tammy

Hiya Guys,
Thanks for your support, another step forward, back to work. I work in Human Resourcing, on the agency side, and got a really good role so a bit chuffed. Two weeks on boy oh boy, was I thinking I was fit and over fatigue....wrong haha. Anyway, straight back to early starts and getting out of bed at five am. All good but unlike before I really have to factor early to bed nights in and Sat is a lazy write off - all doable and great to be back in the real world, months of hospitals and home sort of leave you a bit shell shocked.
Next check end June. Neck dissection is main trouble but not big problem, stiffness, soreness, bumpy where lymph drainage isn't sorted yet but it gets a lot better and of course wobbly chin but things tightening up slowly. The exercises the docs recommend for throat and neck before and post radio really work if you keep them up. Coming up to year since symptoms in June, Diagnosis July and neck dissection last week august. Feels very unreal... sort of out of a dream. Maybe that's a bit lie PTSD, the downer following the stress, adrenalin high of body and mind being on alert etc...
How are all you guys doing...this is tough thing but being positive and more than anything, positive, be strict and take control of well being, leave the rest to the medico's was my way forward.

hanging in there, went to a new job, not so nice people and was commuting horrendous hours, up at five and home at seven in the evening. Tough day and fatigued, chucked it for something local - clearly being a tough guy isn't always best. So far all checks good, Aug 4th is one year post op. Lymph drainage can go from tight chin to right old lumpy saggy chin and sensitive skin. Those just starting this journey, hang in there, be strong, the treatments are uncomfortable but do-able.

Hi John, came across your thread last night. I too had tonsil cancer was diagnosed 19th September last year. Finished treatment 4th Dec 2014. I'm not as well informed as you re the staging , was originally told my cancer was a stage 2T but then when I was referred tonThe Christie specialist cancer treatment hospital they restaged it it a T4 which has freaked me out ever since! If I remember correctly they said it was due to the severe trismus I was having at the time. I had 30 fractions of radiotherapy and was scheduled for 2 cycles of Cisplatin but was only well enough for 1 which also remains in the back of my mind. Had an NG tube was told this was a better option than the peg as quicker healing time and encourages you to still swallow . It was in for 9!weeks I was very sick throughout all the treatment lost over 2 stone , weight stable now 8 months on. Had the raw sore neck but healed well just a slightly different colour to the rest of me, also have some swelling and tenderness under the chin on the left treatment site. Left side of the tongue still giving me trouble been told it's scar tissue and still early days so be patient! Had a clear MRI think it was May time and a couple of clear visual checks all very encouraging. I'm trying not to get too hung up from statistics and read daily advice from Christine, David , Tony , Bart and others who are far wiser and more knowledgeable , I visit the site every day a great source of comfort for me. I rarely post , always worried that I'm doing it wrong as not very experience on the computer and never posted in a forum until I discovered OCF. My taste still has room for improvement but know it can take up to 2 years and I have no sweet taste buds which is a shame don't half miss cake biscuits and chocolate!! On a plus I have no problem fastening my size 8 jeans now! Lol . I have some saliva but still a problem been on Pilocarpine tablets 6 daily they have really helped in stimulating my salivary glands and I've had very few side effects just the odd clammy feeling now and again but benefits far out way side effects for me personally , did read a lot of reviews before asking for a script as wasn't told about them by my consultant , and many people have not been able to tolerate them so I'm lucky in that respect. Not sure if you've tried them but may be worth a go. I know what you mean about being anxious and constantly checking things I still need lots of reassurance got a spot on the roof of my mouth had it since finishing treatment had it checked twice ( not biopsies ) told it could be a blocked salivary gland and it doesn't look sinister but I'm still not reassured I want it gone or at least a biopsy but nobody really listening going to mention it again at my next appointment in September will be more assertive I think! I don't know if my cancer is HPV related hope it is! Like you avid non smoker rare drinker I mean maybe 1 a year but never touched a drop since diagnosis and never will again . Back at work still doing 3 days had a 3 months phased return using 2 days A/L worrying a bit about how I will manage full time going to see about dropping a day ..... Believe we now fall under the DDA and have more rights , fortunately I work for the council and they have been fantastic with me , no complaints there or about our NHS. Lots of little niggles in the back of my mind but now have a completely different attitude to just about everything , appreciate life , family so much more and don't stress about work and bring stuff home anyone or am fanatical about cleaning the house it's all about looking after me now . Oh and I'm having acupuncture weekly at the hospital not sure if it's physically helping with the dry mouth as on the pilocarpine tablets too but will continue for as long as they allow me too. Any way I hope your doing okay and I'm sending my love and positive thoughts to all the wonderful people on this forum who give me hope and inspiration daily. I'm going to make an effort to post more often as I get so much from reading others just not sure what anyone may get from reading mine! Best wishes everyone , love Di