Hi Nicola.

It seems I am in a similar boat to you, I delayed going to the gp for a month as I have had tonsiliis a lot so tried all the thing I normally do, then the gp tried strong anti biotics but as soon as I knew they were not working I went back.

As I said to her a sore throat should not last for 6 weeks so within 2 weeks I had an ENT appointment.

Things moved fairly fast then, they booked me into a onestop clinic for neck lumps(idea was to be seeen by everyone in one visit and be told what was wrong on the day) but also a ct and surgery to put a camera down and take samples. by the time i went to the clinic i had already had the ct scan (the day before) and a date for surgery(biopsy) I was only in the clinic a few min as they told me about the mass on the ct and needed the samples and MRI to know more. at no time has anyone told me in the way your gp has, it seems bad untill the have formulated a plan as it seems to me not all are the same. I am ecpecting a combination of chemo r/t and surgery.

I have only told one other person apart from my wife as timings are not good and untill I have answers it will just be harder. 

Seems like a heavy burdon at the moment.

Ken.

Hi all how are we all doing?

sorry not been around but it's been crazy at work

welcome aboard all you new peeps I know you prefer not to be here but this is a great place to be if you are in our club

mutant of which you are not I had throat cancer I got away with not having surgery and am now 7 months post treatment and very much on the mend although I have still got a way to go to get back to what I was

i diarised my experience on my blog page so it might give you some idea about what you are about to go through gammaraygary.wordpress.com/about/

so what's doing all looking forward to meeting you all in AprilApril

Hi Gary, good to hear from you.   I'm getting along fine, apart from a heavy cold and prolonged extra morning gunge in throat - as if I didn't have enough of that already!).  Very busy at work and lots going on at this time of year with birthdays, a diamond wedding party tonight, Australian godson arriving from Nigeria in April and of course our Big Day Out in London on the 25th.  Really looking forward to meeting you and the rest of the gang.

Hello to everyone else on the thread, in particular newbie Ken.  You've come to a great place for moral support, sounding off and making new friends who know all about what you are going through.  I also had surgery (to remove neck lump and a tonsil) then chemo & RT.  I'm now 14 months post treatment and life is pretty much back to normal, apart from the occasional moan about morning cough, dry mouth and change of eating habits.  I went back to work part-time 2 months after my treatment ended, but I struggled with fatigue for a while. I'm sure you'll find Vatch's blog of great help, as well as reading back through the posts on here.  It does feel like a really heavy burden at the start of the journey, but you will soon be looking back and realising the treatment, although pretty nasty, was well worth going through.

Best of luck and keep in touch.

Irene

PS - Mary I hope your MDT meeting went well and you're making progress with eating.

Thank you Irene.

Already this site is helpful if not making it more scary as it is getting less and less unknown about what is to come.  I am sure once I have the meeting to spell out what we are to do I will have a great thirst(seems that will last about A year) for info about what is to come.

Vatch's blog will help as a lot of the things like the dry mouth will help, I will let my wife read this nearer the time if she wants as she is going to have to deal with a lot.

Ken.

Thank you Irene.

Already this site is helpful if not making it more scary as it is getting less and less unknown about what is to come.  I am sure once I have the meeting to spell out what we are to do I will have a great thirst(seems that will last about A year) for info about what is to come.

Vatch's blog will help as a lot of the things like the dry mouth will help, I will let my wife read this nearer the time if she wants as she is going to have to deal with a lot.

Ken.

Hi Ken

I do worry a bit about striking the right balance on here between making the treatment sound too scary and making it sound 'copable' - sorry can't think of the right word - but the truth is that it is both. A daunting prospect but one which many of us have survived intact and emerged feeling a bit 'bruised' initially but ultimately glad that we live in an age where this treatment is both available and very effective. So the dry mouth and altered eating habits, while a literal pain in the neck, are a small price to pay for keeping the enemy at bay - think I feel another poem coming on :confused:

Stay positive and keep in touch.  Good idea for your wife to read up as much as she can on what to expect too.

Best wishes

Irene

Hello again, well I have been to have my mask made and as you said it was a dawdle. I went again the next day for the Simulator but the mask did not fit properly and they had to get the chap from the mould room in twice to adjust it. Then the nurse could not get a vein to put the dye in and had to call a doctor in. So a 10 minute appointment turned into an hour|||  Still that's it all ready now. I go back on the 16th for pre-assessment meeting and my radiotherapy starts proper on 20th April.

Can I ask if anybody is able to eat nearly normal foods again. At the moment I am having to put everything through the blender before eating as 9/10ths of my tongue was removed and I have a flap in place of it. Does this get any better or do I need to blend my meals for the rest of my life? I know my life will never be the same again but I was just wondering if this was it. I'm buying Marks & Spencer's meals at the moment and one meal does me twice after blending. At least it gives me some variety and I can sort of taste what it is with the little bit of tongue that was left. Although this may not be the case once I've had all my radiotherapy.

Any advice would be appreciated. Thankyou, Mary

Mary, the girls here would be best advised to talk about issues with your tongue as they have had similare mine was just throat cancer

but i guess you are about to go through the same chemo and radiation process that both tongue and throat cancer sufferers go through.

Do you know if you have accesss to tomotherapy as opposed to normal radiation?

What you are about to go through is difficult, but hey, they people you are now talking to have all been through it and we are out the other side. I do not mean to scare the living daylights out of you hear but the treatment for head and neck cancer sometimes appears more brutal than the cancer itself ... of course it not as the treatment is trying to save you life.

As your treatment progresses there are many things and tips we have all leant to make thigs easier, but we all go through this differently.

I can ony talk about things from my side, but can tell you that people like Simon, Guzzle, Irene, Debs and Nicola were great people to talk to during my treatment.

If you want a bit more information on what it was like for my I blogged the whole of my process ... it helped me talking about it but i also hope it helps others understand what they are going through.

Once agin i hope i have not scared you, thats not my aim ... my blog page is gammaraygary.wordpress.com/about/

Shout if thereis anything you want to know

Have a good Easter

Regards

Gary

Happy Easter all ....looking forward to seeing you all on the 25th

Easter is going to be a funny one for me this year as i can't eat Chocolate ... its still too painfull on the teeth. how's everybody else doing with chocolate?

I can eat hot cross buns laddened with loads of melted butter, but thats it.

Enjoy all

Vatch

Hi Gary, Happy Easter!   Same for me, I no longer eat chocolate.  For me it's only the taste that puts me off plus it tends to linger in my throat.  I still can't believe I'm saying this as I was a bit of a chocaholic before! It normally doesn't bother me much, but I did feel a twinge of something - sadness? anger? resentment? not sure what - the other night watching the latest M&S TV ad for easter eggs!  Having said that, it's quite a while since I gave it a try (at Christmas time nothing had changed) so maybe I should keep having a wee taste every so often in case things have moved on a bit. You've just given me a notion for a hot cross bun!  I tend to steer clear of all bread, buns and biscuits but maybe I should be giving them a try occasionally too.  I do have a bit of cake now and again (usually sloshed with custard or even just milk and microwaved into mush). Suppose I could do the same with a hot cross bun and hopefully get the flavour?  Look forward to seeing you all on the 25th too.  Cheers, Irene.

HI Mary,

I think your doctor/surgeon should be able to give a prognosis as to the possibilty

of your being able to eat normal food eventually. Mine was able to tell me  that

it would not be possible because they had removed my soft palate and that together with your tongue

controls the opening and closing of your throat. I have an opening into my throat which

is about two inches square and not the normal small arch shaped opening .

It also controls your ability to form sounds. So if you can speak reasonably normally

I would guess you have little to fear, but that is just my opinion formed by personal

experience.

Good luck with your progress through RT.

Colin 

Hi Mary

I hate the new format of this site, it seems to keep losing things - or maybe it's just me!  I thought I had sent you a wee reply but there's no sign of it now!  So anyway.... glad your mask making went smoothly but too bad they had to spend a bit of time make adjustments.  It's crucial they zap the right spot, so time well spent!  I'm probably not best placed to advise re likelihood of you eating normally again, as my cancer was base of tongue/tonsil and I didn't need any surgery to my tongue.   I still tend to avoid some foods (bread - difficult to swallow) and chocolate (doesn't taste right) being two examples.  I also drink lots of milk to wash things down as it seems to lubricate better than water.   I see that Colin has already been in touch with you and there will be others on the thread who have also had tongue reconstruction who will share their experiences with you too, I'm sure.  Nicola, who began the thread, is doing really well now and has made great progress with her eating.  I'm looking forward to meeting her at the end of the month.  

Keep positive, keep smiling and keep in touch.  Love, Irene x

Hi Guys, 

sorry to dig up this thread. Hoep you are all doing well and having a good weekend.

I just watned to ask any one who has had a neck dissection, did you have any scar tissue problems?

I ask because I have had a small bump come up on my neck above the scar. The consultants say they think its just soft tissue but are sending me for an ultrasound to be sure.

I have gone into a worry a bit about it but they did not seemed concerned so hopefully its a thing they see often.

Many thanks.

Hi Space,

I have a lump above part of my scar tissue. The surgeon said it is liquid which can no longer

easily move down my neck because of the scar tissue. I suppose this is because the scar tissue

goes all the way through. Strangely it is on one side of my neck only, the up and down scar on the other side has no problem.I massage it each day when I shave and it has remained unchanged. Its almost 8 years now so I guess I'm stuck with it. A couple of years ago when I had my annual checkup I asked if they could remove it. Their attitude was 'why bother', so I didn't.

Colin

Hi Colin,

Thanks for your reply. Glad to hear you are almost 8 years post cancer.

I have had my ultrasound and they say its all fine, the bump is a remaining node which will have fluid every now and then and puff up a bit.

They did say there is a something (cant remember the name) in my thyroid, but it has not changed in six months since the last scan and its not related to cancer. Looked circular, but they say this is common in many people, anyone else had this?

I have also seen my consultants and they say everything looks fine, tongue is rocevered well and neck, they say they do not CT scan me anymore, I was qutie surrpised by this, but they say they only scan if there is reason to. I trust them.

Thanks again.