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 Mary,

The mask making is a doddle. They put a square of warm plastic mesh on you face. It has a hole for the

nose and maybe eyes(I can't remember). This takes a few minutes to cool and set.

You don't feel anything with the actual RT.  You may get  slight redness like sunburn after a few sessions. They give you a cream if this happens.

I had 42 sessions and was slightly red, not burnt. It is probable that it will cause you to have mucus in your throat after a few sessions.. If this happens be sure to cough up as much as possible prior to an

RT session.  I was always worried I might choke as I suffered badly with mucus build up, but they watch you on a remote screen so there is no problem.  The setup takes most of the time - the actual RT normally 5 or 10 minutes.

It is nothing to fear, so good luck!

Colin

Hi Mary

It's a very daunting process you are about to enter, but don't be too overly concerned

It was not until I went for my ,mask fitting that it registered with me what i was aboutto go through. Colin is right the mmask fitting session is quick but more wier than frightening. It's just a warm plastic mesh that fits round your face and hardens fairly quickly. It can feel quite clostrophobic but just hang in there as as far as I kow no one has had any serious injuries.

Make friends with your mask as its going to be part of your through your treatment and you get to keep it at the end ...WOW!!!

I had Tomotherapy for my throat cancer (30 of them) and 6 all day chemo sessions and although the radio therapy session were hard towards the end the all day chemo session were just mind numbingly boring

I created a blog as I went through my treatment, which might be of use to you .. it might not

gammaraygary.wordpress.com/about/

Shout if there is anything you want to know there are some great people on here that can help

Vatch

Hi Mary, sorry to hear that you do need to have radiotherapy but this is fairly standard practice and you are in good company here, as most of us have had the same treatment.  I had 30 RT sessions too, plus a weekly dose of chemo. Everyone will have slightly different experiences but like Colin, I thought the mask-making session was a piece of cake.  The simulator was like a taster for the treatment itself, which didn't trouble me as you don't feel a thing.  However, like Vatch, that was also when it hit home for me that this was for real.  I still have my mask and had fully intended to try and turn it into something useful (a planter/flower arrangement?!) but never got round to that or coming up with something more imaginative!

My biggest problem was the excess mucus in my throat.  I already had a condition called 'post-nasal drip' and the RT aggravated this as well as my problems with sickness (chemo-related).  Hopefully you will escape the worst of that.

I was very liberal with the aqueous cream they give you, and think that helped a lot.   I did need dressings on my neck for a couple of days but it healed very quickly and soon afterwards there was no sign of any redness.

By the time you read this you will have had your mask made, so hope that went OK for you.

Stay positive.  It won't be a walk in the park but before you know it, this will all be behind you and you will start moving forward and getting life back to normal.

Best wishes and keep in touch

Irene x

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 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.

Hi all,

After 8 years a little more progress.  My wife often asks as she swigs her wine 'Would you like some?'.

I last tried about a year ago and it was painful, but I said 'OK'.  To my surprise I tried a small glass with

about 30% water and there was no problem. Living in France among the vinyards has been quite

frustrating but now a whole new world reopens. Yippee!.  I can only drink in very small sips but I'm not complaining.

Colin

Congratulations Colin!  We had our get-together in London yesterday and someone (Gary G I think) remarked on how we all practically cheered when Nicola enjoyed her first glass of rosé (albeit watered down with lemonade)!  It was just wonderful to meet the friends who helped so much to pull me through it.  We are planning to meet again (Liverpool and Edinburgh) so it would be great if you were able to join us - watch this space!  There was even talk of New York when we're all signed off at the 5 year mark!  Santé!

Hi I have just completed my first week of Radiotherapy and already I am feeling very tired and have nausea all the time so I am unable to eat any of my blended meals. Is this normal so early on in my treatment? I may ask for some high protein drinks tomorrow as I am not too keen to have a gastric tube fitted this early in my treatment. Has anyone got any advice. Many thanks - Mary

​

Hi Mary, I was also taken aback at how quickly I felt floored by the RT.  Everybody is different though.  I think for most people the eating problems don't kick in until week 3, but for me it was just into the second week.  I was never quite sure whether it was primarily due to the chemo or the radiotherapy (I had double doses of RT to compensate for the Christmas and New Year holidays) but I certainly had fairly bad sickness problems. The thing to remember is that there are many anti-sickness drugs they can try, so if the problem persists, keep letting them know and they should find something that suits you better.  Also I guess all hospitals are different.  Mine fitted PEG tubes as a matter of routine pre-treatment, so I started supplemental PEG feeding around the end of week two. I'd certainly recommend trying the energy drinks first and see how you go.  Don't despair though, they will ensure you get the nourishment you need to sustain you.

I met a wonderful bunch of people yesterday - we supported each other through the worst spell and all have slightly different tales to tell of our experiences.  

I well remember how bad I felt with the nausea/sickness so appreciate what you are going through. Hang on in there, keep telling your team when you are having problems (don't leave them till the last minute as I did twice) and keep in touch with us.

Good luck, Irene x

[[]]Lo

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It was a real privilege to meet up with my forum friends Nicola, Simon, Vatch, Guzzle and his friend Jayne on Saturday.  We are planning to get together again so watch this space - all welcome!