Hi
Firstly I'd like to aplogise for remaining virtually silent since I strted my traetment which is now fished> I don't really want to be 'the one who takes and never gives' but I have been very depressed and felt like ending it all but the only thing which holds me toghether is my wife and my little daughter ( I would attach a photo if I knew how) I really would like to help anybody who would like to know about my experiences with the treatment which was a combined chemo and IMRT ( intensly modulated radio theraphy)
I was always under the impression that aftera few months I would be able to eat normally!!!!! This doesn't seem to be the case and when I realised that I lost it!!!!
Before this awful disease our life was centred around EATING in Restaurants with friends etc! The thought that I will NEVER be able to do this again is ....well ...I don't really know what to sayor what to do next. I know that survival and the impending results are the main objective but the quality of life is as important. Once again I am really sorry for unloading my problems but I would really like to help as well.
Tomorrow is another day
All the best
LONI

Hi Loni,

So sorry to learn you are feeling so down, but not surprised - looking at your timeline I guess you are not long out of treatment so you are bound to be feeling pretty grim. What have the doctors told you about eating in the future? My partner had treatment for tonsil and lymph node involvement at Brighton and although he managed to eat a little by mouth throughout therapy did not start to enjoy food again for at least 4 months.

I hope that you too will be able to do so.

Best wishes,
Cathy

Thanks Cathy, Amazing coincidence about being from Brighton ! I was told that The Royal Sussex didn't offer IMRT and therefore I had my traetment at the Royal Marsden in Sutton. By the end of it I was sick of the M25!
The doctors are only giving me information on a need to know basis and at the moment the focus is on keeping me alive. I don't mind if I can eat in six monrths time as long as I will be able to but all the feedback from various sources seem to indicate that 18 months is more likely? I REALLY HOPE YOUR PARTNER'S EXPERIENCE IS NEARER THE TRUTH !
All the best
LONI

Oh I am sorry and want to encourage you, but obviously it depends on where your tumour was exactly. Chaz didnt have IMRT - it was never given as an option so he had a large area zapped! He not only started eating well after 4 months, but has put all the weight on he lost and more. We are out at restaurants all the time and he eats anything and has been doing for at least 8 months - so all taste seemed to come back by 8 months after treatment. Lots and lots of chili! So I will keep my fingers crossed for you.

Best
Cathy

Hi Loni,

My mom was exactly the same as you, she was so upset and thought she would never eat again. She finished her treatment november last year, she had full Radio, not the IMRT, and chemo.

In the last two months she has started eating again, and in fact last night she polishes off a chicken Korma and a plate of rice to the shock of her best friend! We all clapped and she looked at us like we were mad!

It does get better, I know at the time we wanted an exact timetable, but what happened with my mom was as soon as she turned the corner she has started eating again very quickly.

best wishes for you

Oliver

hi loni. this time last year i was where you are now, and in my case the mental battle was the hardest, do i wouldent like to have to do any of it again,i was also on a need to know basis, had bad claustrophobia and panick attacks, thanks to my local cancer suport group they helped with counceling and even some reflexology . panick attacks stopped and then a dr told me i might never eat again. i could not even swallow my own spit(not that i had any) but he was wrong like olivers mum i can now eat almost any thing i want at the moment im trying to get the weight down a bit i have dry mouth so i need to keep water or mouth moistureiser at hand but even that is improving' i am doing a self awarness meditation course at present and it seems to be doing a lot of good.hope this gives you some hope. im not very good at explaining things and im inclined to try and get from A to Z in one move but this recovery takes time, a year ago i had to tell myself i was getting better now i tell myself i am better, keep in touch jimmy.

Hi Loni,
Eating out will certainly happen for you in the near future. It did for me. It has to be mildly spiced foods (deffo no chilli!!). Kormas and pasandas are the order of the day.
My saliva glands hardly function so the food has to be very moist.It usually takes alonger to eat (this is no bad thing).

Good luck - you will get there in the end (sooner than you think too)

cheers tony k

Im am still having my radiotherapy, four days left. 0n the way home from hospital we pass coffee shops and eateries and i would love to one day be able to pop in. Itried to carry on eating and drinking throughout my treatment but the taste of everything was so awful i resorted to using my PEG, which also helps with the medication. Ido still drink a little water, not much but enough to prove to myself i can still swallow.Like Jimmy I cannot swallow my own spit its too thick and makes me retch and gagg.
I know when i finish my rads next week things will be rough for a while but how do you progress fron there? What makes you start eating and drinking again? How long does this take? How do you progress? When do your taste buds return?
Thanks for advice

Hi gd,
I soon got my appetite back after RT finished. I had a fixation about not losing weight.I used to eat bramley apple pies with lashings and lashings of aerosol cream. suffice to say i was one of those rare cancer patients who put on weight !!
I still eat too much cream!

all the best - tony k

Thank you everybody.your encouraging words made all the difference and I feel that I can at least look forward to a normal life....providing the results of the CT scan in mid May is positive.Otherwise I believe that further surgery to remove the lymph glands will be necessary. God knows what that entails!!!
THANK YOU AGAIN AND HAVE A NICE WEEKEND
LONI

Thanks tony for your reply, but could you actually taste the bramley apples and cream? did you try them with custard? I thought custard would be something to look forward to but having had these vanilla fortisips i wonder if they will put me off.
Loni, sounds like we are similar my RT finishes next week, it was originally due to be today but the oncologist decided/advised a further three treatments directed to the tonsil area, where my primary was discovered and removed but not as much surrounding tissue as they would have liked to remove was able to be removed.
I had lymph glands removed at the same time as my tonsil.

After thirty radiation treatments my mouth burned so badly I cried. I've been seeing an "oral specialist" now and he specializes in radiation and it's effects. He has helped so much. He presribed Clanazapm for pain and saliva flow, Bethanechol for pain and Gapepentin. Having less pain allows me to eat more comfortably. It's been three years now since I completed my treatments. It's been slow going but I can eat so much more. I can swallow easier and eat more foods. I still have to avoid spicy and acidic food and I have to slather food in butter or find ways to make food soft and wet. Also, I have no signs of cancer now foe two and a half years.

Hi, Laurel. I just wanted to offer some sympathy. I am lucky, I have got back to reasonably normal eating (has to be fairly soft and juicy), avoiding spicy foods, anything with too much vinager or lemon juice etc, and wine (I can drink it if it's fizzy - generally, fizzy is good for drinks), a year on from treatment and surgery; but for you still to be suffering so from the radiation treatment after 3 years seems really unfair! I believe it was Debs on here who said courgettes are the wonder veg. They are! Having courgettes with just about anything really adds moisture and helps chewing and swallowing. In general, I eat tons more vegetables than I used to, and fish - I find meat hard to eat, very dry and chewy, and the smell of fat is still really unpleasant to me. So, the good thing is, it is a much healthier diet I still follow the good nutritional advice I received during my treatment, for boosting foods: melting soft cheese in soups, that kind of thing. And I eat a lot of pasta, as long as it's juicy enough.

I also recommend a Magnum a day. Just becuase. The excuse is, cold things encourage the swallowing action!