Thanks Anne.

I think I have worked out why I have been feeling so down after the consultation. At first I thought I had a sort comfort zone associated with being a cancer patient, because it is what I have been doing for the last year, and I thought I was reluctant to let go of this, and return to the real world.
I think that there may be an element of this, but I believe that my major issue was that I asked if my tounge/tastebuds were likely to heal any more, and I was told that after nearly a year, it was about as good as it was going to get. He suggested that if I made sure that my mouth was moist before eating/drinking then the flavour would be better, but this doesn't seem to work for me. So then I started to think of all my favourite things I would never enjoy again - Raspberry Pavlova, Red wine, a glass of champagne at Christmas and New Year, Fruit smoothies, any soft drink, etc etc etc.
However I've had a chat with my mentor (my sister) and she has suggested that I'm not the fastest of healers anyway, and I know that I didn't heal at all over a period of 4-6 weeks when I could not eat anything, so there may still be quite a lot of improvement yet.
I think what I miss most is being able to drink anything but water. I've tried lots of things, and they're fine when I'm holding the drink in my mouth, but when I swallow the reaction on the back of my toungue is truly horrible. I took one of those free samples of a fruit smoothie in the supermarket last week, but I had to give it back as I couldn't drink it,

Very pleased to hear that nothing abnormal was detected. Don't feel bewildered - we all prefer to err on the side of caution. Much safer to do that.

Don't know why I missed seeing your later post when I posted above. Jenni please don't believe your consultant on the taste issue and that the taste you have is as good as it will get after 1 year. My taste never really recovered until year 3 and yet even at year 4 I still notice improvements. Even this week I have had a taste improvement in one food. Barry at the ACOR listing once mentioned a taste improvement after eating a new food 5 years on.

Remember that the consulatant has not experienced radiotherapy and it gets everyone differently taste wise. They think they know what it's like, but you have to experience as many of us here have to really understand how disgusting and non descript or purely foul tastes can be. And for some it will always be easier than for others. Hang on in - it does slowly improve.

I suspect you have the fear many of us have had, which is will I live long enough to see a taste improvement.

Thanks Pauline,

I'll keep trying, and keep hoping for improvements. As a self confessed chocoholic I still miss milk chocolate, but I seem to be OK with Smarties and plain chocolate mints.

Pauline,

I have thought about the last line in your note for a while before replying. I'm hoping to live for a good long time yet, and I'm hoping that I'll be able to eat all my favourite foods as well!
In many ways I have been really lucky;
my cancer was caught at a very early stage (T2,N0,M0);
I have not had to have any radical surgery, only a 'normal' tonsillectomy which was then used to do a biopsy;
I have only had radiotherapy on one side of my neck.;
However because I was only in my 40's they decided to treat the cancer quite aggressively and I had radiotherapy and what I have now realised was high dosage chemotherapy (Cisplatin) concurrently. I think they thought that because I was relatively young my body would be able to cope with this and recover more easily than somebody who was significantly older. I was told that taking the chemotherapy at the same time as the radiotherapy would increase the sucess rate from 85% to 95%, so I would have been a fool to turn it down.
The last 10 months since I completed the treatment have been very tough though. I keep thinking that I'm much better, but then the following week I realise that I'm wasn't completely recovered the previous week because I no longer hurt in all my muscles or joints, or I no longer sleep on average 15 hours a day. After all this time I can no longer remember what was normal for me, but I can remember leaping out of bed when the alarm clock went off at 6:45, showering, dressing, doing my hair and make-up, driving 20 miles and back to work, cooking tea for my family, doing a load of washing, going out to a pub to see live music for the evening, then coming home to take the washing out of the dryer and fold it before going to bed. Now just typing that makes me feel tired!

<<... I'm hoping to live for a good long time yet, and I'm hoping that I'll be able to eat all my favourite foods as well! >

Well I am sure you will as you have given the treatment a real go. I was alarmed by the genearl stats on H and N.
All along I have taken the attitude why can't I be in the good statistics rather than the bad statistics. Someone must be in the good ones. So it sounds like a real chance with such a high perecenatge for you.

I suppose my comment may well be related to my own circumstance of being 'occult primary' and told 'we cannot say you are cured' directly after the treatment as obviously they didn't know where it was only hoped they knew where it was. I get frustrated reading about things like Kylie Minogue today and also a friend of mine (who has had bowel cancer) being told straight after treatment that they got all the cancer. I'm delighted for them, but it is confusing that some of us are told the cancer whatever variety it is, are cured/clear and others are not. I concluded a long time ago that without treatment I'd have been dead 9 months on at the rate of lethargy I had at diagnosis. So one has to hope it worked.

<<I have only had radiotherapy on one side of my neck.>>

What is 'only' about one side. It is still an attack on the body and if I still have dry mouth problems 4 years on then with the chemo you had you can expect long term disruption to your system. I hate to suggest this, but also at your age it might be worth discussing HRT or just absorbing the fact that your body is preparing for its next feminine stage! Some of your lack of energy may be due to all sorts of other things like thyroid or early menopause. We are supposed to have regular thyroid checks after this treatment. I get a blood test just for this every 6 months. However I do know when I asked about tiredness at the docs I was told if you need painkillers on a regular basis they will often make you more lethargic and it could just be that.

<<I was told that taking the chemotherapy at the same time as the radiotherapy would increase the sucess rate from 85% to 95%, so I would have been a fool to turn it down. >>

You are right, you have to give it that first big chance to zap it. I was never offered chemo as I think it is only offered when they know where the cancer exactly is in your body.

<<<The last 10 months since I completed the treatment have been very tough though. I keep thinking that I'm much better, but then the following week I realise that I'm wasn't completely recovered the previous week because I no longer hurt in all my muscles or joints, or I no longer sleep on average 15 hours a day. >>

Yes the first year is a really tough year.

So Jenni do you think that what you feel is 'frail'? I think frailness is all par for the course post treatment for 2 years. I really do look more robust now. My mum kept saying you look so dainty being her euphemism for frail I think.

<<.. I can remember leaping out of bed when the alarm clock went off at 6:45, showering, dressing, doing my hair and make-up, driving 20 miles and back to work, cooking tea....>>

LOL I recall doing that at your age too. Now though I have to psyche myself up the whole day if we have an evening event. But youwant to be abck where you were don't you. I think some of it will come just more slowly than you think.

Just wondering do you still work? I work long hours, but from home, but I could never do a full day teaching now. I have gotten used to the idea things are the same, yet different.

You will get through this. Your recent scare will have drained you and we do all know how fear can play around with the brain.

Hi Pauline,

Thanks for your long answer.

I think that some of us hear what we want to hear when we see the consultant. Thinking back I'm sure that we were told that the chemo would increase the chance of zapping my primary tumour to 95%, whereas I'm sure both my husband and I heard that the chance of my survival for the next 40 years or so would be increase to 95%. Also a few months after the treatment the consultants were pleased that my throat had finally healed, and there was no sign of the primary tumour re-growing. I was rather surprised to hear my husband joyfully telling family and friends that I had had the 'all-clear'. So sometimes what your hear from others is what they want to believe, and in many ways I believe it would be cruel to disillusion them.

When you think about cancer in the neck, there is not a large margin of surrounding tissue so after surgery it is difficult to be sure that all of the tumour has been removed. Because of this the radiotherapy and chemotherapy for some head and Neck cancers is possibly more agressive than might be needed for some other cancers. The other option that many on this site have had is much more surgery and reconstruction.

The long term survival rates on most sites are not up-to-date, and the cancer research site states that they do not have enough data to give accurate results for head and neck cancer. There are some on the office of national statistics site, but they are not very easy to read. Also the five year survival rates must by definition be at leat five years out of date, and so much progress is being made in this field, that I'm sure our chances are much better.

Thanks for the suggestion about HRT. When I mentioned my fatigue to my doctor he sent me for some blood tests to rule out an early menopause, as he said that this was a possible side effect of the radio & chemotherapy. Nobody told me about this before the treatment started, but I'm sure it wouldn't have made any difference to my decisions anyway.

I've been lucky in that I have not had to return to work yet, my employer paid me full pay for six months, and then I went onto 75% of my salary, paid by an insurance scheme I was paying into through my job. I'm planning to go back in the New Year and I've just had a meeting with a vocational rehabilitation consultant about this. She will be working with me to help both me and my employer make my return as easy as possible.

You are so right about the recent scare setting me back, I feel as if I've slipped back a month or so.

This message has been edited. Last edited by: Jenni,

Hello Jenni

You are right about the statistics lagging behind. There is progress being made.

Fatigue is something that you may have to contend with as you return to work but things get better with time.

Let's hope there are no more scares!

Best wishes
Vinod