Hi everybody, I have only just found this site, which is a shame as I think I would have found it really useful in october 2005 when I was diagnosed as having cancer in my left Tonsil. I had suffered from inflamed tonsils since my holiday in August. I also suffered from really painful feet whilst I was on holiday. (Did anybody else have this?) After a couple of months I was referred to a specialist, but my appointment took a couple of weeks to come through, and by then I had started to panic, and I arranged to see a specialist privately. Within two days I was in hospital (back on the NHS thankfully) and I had my tonsils removed to identify the problem. A biopsy showed that my left tonsil had a squaemous cell carcinoma, and although I did not find this out until much later, the infected cells reached right to the edge of the removed tissue. I had four weeks of daily radiotherapy, including the Christmas and New Year bank holidays, and two sessions of Chemotherapy. During the treatment I remained fairly positive, but in the following months I was unable to eat properly, and therefore my throat did not heal very well. I was also depressed, and I have had really terrible fatigue, which is something I wasn't able to understand before I had cancer. I haven't worked for over a year now, and I'm going to try to return to work in the new year. It has been a very difficult year, but I'm hoping that things will start to get better soon.

Jenni.
Welcome to the Mouth Cancer Foundation. This is the place where virtually everybody on here will understand your problem.
I went through a similar regime to you but had 35 sessions of Radiotherapy, left, right, and centre of the neck. I could'nt eat solid food for around eight months, and became addicted to Morphine. I suffered the worst depression imaginable. It took me over two years to fight my way back to some sense of normality. Sadly, many side effects have stayed with me such as limited jaw movement, dry mouth, and neck muscle cramp and spasms. I do as much as possible to forget about it all by keeping as busy as possible. I get days when I am very low and what's made things worse for me is that my ex-partner has started hounding me again since the beginning of the year with all kinds of nonsense that for all intents and purposes were dealt with back in 2003 when I fell ill. I seem to be carrying a lot of worry at the moment but stay afloat somehow. It's a fine line but I have to deal with whatever comes along.
Life will improve for you Jenni but you will occasionally stumble when faced with any additional worry. The depression can be very difficult to cast aside and that tends to feed the fatigue but if you stay as positive as you were when your treatment started you'll open the next chapter of your life with renewed vision. I used to smoke and drink but now do neither so effectively my illness prompted me to give up the habits I never thought I could break. I also eat much more fruit and veg than I ever used to and I have a whole new routine. So some good has come from my brush with death in so much as that ive made potential future life saving changes to the way I live.
A few more members on this forum will share their thoughts on this and if you ever need to let off steam.....then this is the place to do it.
Good luck with your plans to return to work in the new year. Its a big step when you have been through so much as your confidence is probably low after your experience with Cancer.

Jenni,
I have had the same treatment as you plus a radical neck dissection which has left a few problems. I finished my treatment at the end of August and i am going to ask for my peg to be removed this week as I can eat pretty well now. I have radically changed what I eat- like Steve I eatloads more fruir and veg. Fish is a must as meat is still very tricky, I was never a fish lover but can cook it in several ways now and have tried many varieties. I have just come back from a trip abroad- only for 3 days but what a differenc it has made to me. I tried new foods and the sunshine was brill! I still feel tired but I am very sporty so make myself go out and do stuff. Keep talking to people and get out every day. You are not a cancer patient now- move forward and be positive!
Anne

Thanks Steve & Anne. I just had one of those 'Why did I bother going through all of that?' days yesterday. I'm feeling much more upbeat today.
I'm surprised that you are both eating more fruit and veg. I still find that fruit is much too acidic. The first taste buds that came back were the sweet, and then saltly. I'm OK with meat, which I've always loved. I'm not sure if I really like the taste, or if I just remember that I used to like the taste, but I guess that either will do. I'm still searching for anything else other than water to drink, I can't stand any of the soft drinks I've tried, milk, tea, coffee, wine or beer. Any suggestions?

Keep trying is the golden rule. Try fortnightly rather than daily with some things. Tea - try Earl grey with milk it's not as tannic as other teas. I mainly drank water for months - still do, then progressed back to Earl grey and pepsi or coke. Coca cola is good in the early days as it can cut the phlegm a bit. You might also find ovaltine or drinking chcoolate ok. First time I had chocolate after rads was months later and I had it out out of desperation. It was with little marshmallows which somehow dissolved. It was a real find. I still can't drink coffee as it dries the mouth even more for hours.

Like you I also had a problem with fruit for a long time. Stewed apple or stewed plums with plenty of sugar or made as acrumble or a tart and lots of cream was the only choice. But the strangest fruits do start to become ok. Tinned mandarin oranges were better for me than real ones. Even now there are days when I can eat fresh oranges and other days when I can't. You do get to recognise days when your mouth will only take less acidic foods and other days you'll find they will go down. I still can't eat raw apple unless its grated. It chokes me.Bananas are best when very ripe as that green taste goes and they are sweeter.

I missed fruit a great deal and you may be tasting a kind of greenness too as wellas acid. I'd say if things feel too tart and acidic avoid them until it changes or you may get extra mouth ulcers. This still happens to me now. You will learn to judge this and it is confusing why some days you think you have moved forward only to find a week later the food doesn't work well again.

You are lucky you can eat meat. I can still only manage about a 2 inch square cooked very softly 4 years on.

Carrot and vegetable soups also work well and carrot soup is slightly sweet so may appeal to you.

Hi Jenni.
Glad youve picked up a little.
With regards to acidic fruits, I should mention that like yourself I usually avoid them but I do eat a lot of melon, mango, bannana, peaches and so on chooped and covered in Carnation or a few squirts of whipped cream. Wine makes my toes curl but i'm allright with smooth beer like guiness.
The worst culprits by far are hot spicy dishes that I used to relish pre-cancer days. Anything stronger than the very mildest curries will make my tongue sting for many many hours even when washed down with copious amounts of water. I guess this is one of the reasons I rarely eat out anymore as i'm used to preparing my own food for peace of mind.

Thanks Pauline and Steve, I'll definitely try out your suggestions. I have recently discovered that plain chocolate mints are OK, and the weight is now piling back on. I still can't eat milk chocolate though, and as a confirmed chocoholic this is very sad.

Hi Jenni,
I agree with pauline- fruit teas and earl grey are much better than normal tea. I have just bought a water filter as I found the taste of water very chemical. This has made a difference to how my normal tea tastes. I am drinking orange juice as of today(couldn't at the weekend!)My tea tonight was a small amount of chicken in copious amount of sauce with cabbage broccoli carrots and noodles and for pud apple pie and custard. My appetite is back!!. Sounds a lot but only had small portion.
I have found I can drink guiness or boddingtons. Wine or lager NO! Make sure you haven't got thrush as that cam make your mouth so sore! Keep going to the dentist make him/her your best friend as they can advise you on all sorts of products to make life easier.Speak soon
Anne

Hi Jenni,

Like you I had a tumour in my left tonsil (reading the posts on this site it seems to be far more common in left than right - I wonder why) Anyway my treatment was similar to yours but I didn't have chemo - did you have to have a 'flap' ?. Like you I was having radiotherapy all over the christmas period, mine ended on 31st December 2005.

Now 10 months later I am feeling much better. But food is my nemesis! I get so fed up with same old things - soup, yoghurt, porridge, weetabix etc etc! There is a section on this board that has recipes and suggestions you might find that useful. But like Anne says keep trying things, anything new that you manage is such an achievement.

I hope your recovery continues to go well,
with very best wishes

Rosie.

Hi Rose,
Luckily I didn't have to have a flap, As the tonsil was taken out to do the biopsy, they just carried on with radiotherapy. The infected cells went right up to the edge of the tonsil removed, so I have been told that without the radiotherapy the cancer would have come back. I think that my throat has healed fairly well as I only had a fairly normal tonsilectomay, and no other tissue was removed surgically. I did find that I bled for months after the radiotherapy, and this made me fell extremely sick. Now though I have quite good saliva glands, and my throat has healed quite weel, so eating is not too much of a problem. But I do wish my taste buds would recover. I don't know if they'll continue getting better, or if this is how it's going to be. In the meantime I'm keeping Evian in business.

Anne,

Thanks for the advice, I'll have a go at different types of teas. How long is it since you completed your treatment? I really can't imagine drinking orange juice yet.

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

I noticed a slight swelling on the side of my neck whilst looking in the mirror when I was brushing my teeth last night. I have phoned the macmillan nurse, who has said she will talk to the consultant, and try to arrange for me to see him this week. It's not a hard lump as such, but it feels tender, just below my jawbone.

Hi jenni,
finished chemo and radiotherapy at beginning of September this year. I know I am doing well I just keep persevering. I have a back up of my peg, but I haven't used it for 2 weeks now.
My first sympton was a lump on my neck,quite soft like an egg, it didn't hurt so I didn't think it was much to worry about.Get it checked out- you may have a ct scan. Hope you are okAnne

Hello Jenni

While all swellings should be checked out, remember many such swellings are just lymph collections or glands and not a cancer. Let us know what your consultant says.

Best wishes
Vinod

Sorry Jenni to hear you have a swelling. I think we all know how terrifying this can be. Don't always think the worst. Harder done than said. One such swelling I had in the first year after radiation was a slightly raised area about the flat area of an egg that was slightly puffy as a red patch on my jaw to ear. I arranged to see the consultant the next week's clinic, but in the meantime as the area seemed almost like inflammation redness I took regular ibuprofen and after a few days the swelling subsided. I think some of these things are just trauma after the radiotherapy. However like Vinod says it never hurts to be vigilant and get it checked out. My consultantt says his job is as much to reassure patients as to find problems.

Getting back to the fluid problem another drink I find refreshiing is green tea. Get some green tea as tea or teabags. I prefer teabags. Put one in a nice china mug. Add a few drops of pure peppermint oil (from the chemists), pour on boiling water and let it infuse for 1 or 2 minutes before removing the bag and sip either as a warm or cold drink. I find it a very refreshing drink that feels as if it cleanses the mouth right to the stomach. Green tea is also very good for you and has some valuable antioxidants thatwe are looking for in fruit too.

Now I hardly ever try to drink orange juice, but I do take some. Another way to take orange juice if you can't drinlk it is too add it to half of prune juice which is good for constipation too. I also make it as a jelly. Make up an orange or tangerine or lemon tablet jelly with half a pint of boiling water until dissolved, then make up the full quantity with pure orange juice. You can add little mandarin oranges to this if you wish.

To be honest I think it's still early days for you. This food business is a long slow job. But can tell you I am trying to diet right now so it must have gotten better as I have regained one stone this past year even with off taste days!

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