I just wanted to say Thank you - I have been quietly reading every comment since my diagnosis in November 2003 - now I feel I can write for the first time!

I'm 41years old Japanese women (therefore please bear with my poor English), living in UK, working in the City, married to British with one little daughter.

Initially I was sent to a specialist in London Bridge Hospital 2years ago by my dentist, in order to check 'white patch' on the tongue -but 'Blue mouthwash' test revealed nothing that time. However the same white patch hardened last year and I asked for straight biopsy - and was told I had T2N0 (4cm dia.) cancer.

My surgeon suggested 'over treatment' due to my age, young family etc. We agreed, cancelled Christmas holiday and I had an ope. on my right/back of tongue, grafted from left forearm, and right side nodes in my neck were all removed for cation.

Path report showed no cancer cell in nodes, but removed-tumor had narrow (3.5mm) safety margin at some places, rather than 5mm for which my surgeon hoped. Therefore I opted for 30days (60Gy) radiotherapy this year and all had completed on 1st March (phew). Now I am recovering well.

One thing I would like to mention; from the first meeting, my Radiotherapy consultant insisted to put 'peg tube' in the 3rd week as their 'normal procedure'. For me, that was 'setback' after all the recovery from the operation (my daughter was so frightened when I was in the hospital with all those tubes). Interestingly my surgeon was not keen on that idea neither.

Therefore I absolutely refused to have any (peg or NG) tubes during the Radiotherapy. The consultant told me if I needed morphine or lose too much weight, I should have peg. Well I was bloody determined to fight, so managed 5 Ensures everyday (nearly drawned by them when I couldn't swallow) with only Co-codamone + Voltarol + Metoclopramide as help. My damaged site was only right side, so I could use left side of my mouth anyway - I suppose I was lucky. Being Japanese, I used Tofu (bean-curd) or other traditional Japanese 'old people's food' & 'baby food' recipes for cooking and had managed to continue eating good liquid meal most of the time. Needless to say, I succesfully avoided any further tubes (ha)!

During the Radiotherapy I had read John Diamond's book at least 5 times and looked up everybody's story/photos/chat on this site everyday and mentally prepared for next day. It helped enormously.

Thank goodness it's all over - though I miss my taste buds and also I am quite annoyed with my left arm scar/keloid looks - what can I wear in summer without offending people?!

Anyway, I am now planning to go back to work after Easter holiday - though I am sure every weekend I will continue to read all the people's comments on this site rest of my life!

Thank you again and best regards + wishes to everybody.

R xxx




I

Hi Ryoko

Ohayo Gozaimas, welcome.

Thanks for your post. Great to know you have come through it well. How is eating now? Is the radiotherapy still causing you problems? The taste does tend to improve with time. Do carry on posting when you can.

By the way, I used to watch Shintaro Katsu many years ago and recently saw Takeshi Kitano's Zatoichi - the blind swordsman! Great film, if you like samurai movies! Don't miss it.

Best wishes
Vinod :coffee:

Dr Joshie, I am intriuged you like films like that?
are they sword fighting films?
I thought you would have seen enough of that in theatre

Paul

Hi Paul

It is like Clint Eastwood in Sphagetti westerns - but blind and with a sword! Zatoichi, the good guy rights wrongs and saves the village from the baddies - again. It was an award winner at several film festivals.

Another good film I saw recently was 'City of God ' set in a notorious slum in Brazil - about how kids go wrong because there is nothing to do except sell drugs! Based on a true story.

Best wishes
Vinod :coffee:

Ohayo gozaimasu (amazed to see someone doing this before 8am!)

Zatoichi is a classic Japanese samurai story alongside with many others alike. Goodies always beat baddies at the last moment with greatest satisfaction to viewers! My father loves those.

Anyway thank you for your caring comment. My taste buds are growing (I hope) daily - I am just waiting to eat lovely Sushi sometime in the near future.

R x

Hi Ryoko, Have read your posting and glad everything is going well for you.
Could you please tell me what TOFU is?
Can I buy it?
I too am back on Ensure now becuse of teeth porblems, sores and weight loss yet again. (the Cancer NOT back thank god).
I would like to try something different.
I am in London so maybe I can get it colse by.
Thankyou and goodluck with going back to work.

Paul

Sainsbury's used to sell it, I haven't looked for a while (used to live in a vegan household, it was one of their staples) I remember it being half the price at a local chinese supermarket. You can do allsorts with tofu and as you add taste to it, its probably ideal for sensitive mouths, excellent source of protein too.
check out this site for recipes

Ryoko, I think you should be proud of your scar, its an indication of how tough you are. that's easy for me to say though, as I don't have one. :blockhead:

My husband John looks very different after his surgery, he tells inquisitive children that the forearm donor site scar is from a shark bite, maybe you could make up a story for those who ask and you are not minded to tell them what you've been through.

jen

Talking about 'shark bite', I recommend ' BIG FISH directed by director Tim Burton (Batman, Edward Scissorhands) for tips on how to tell a tall tale. I enjoyed this heartwarming film about relationship between a father and his son - with Albert Finney telling the tall tales. Great!

Best wishes
Vinod :coffee: (wasn't necessary at this film)

Hello, just coming back from short break in Paris (treat from my hubby). Am surprised to see this chat growing to all different directions!

Re: Tofu - not much I can add now. If you ever go near Picaddiry circus there is 'Japan Centre' in front of Merridian hotel. Their down stairs has lots of supply of Japanese food, including Tofu.

Silky one is smooth and soft therefore you can mush & mix with mince meat + egg + flour etc to make meal soft and easy to swallow. Firm one can be sliced to put in salad or shallow fry as steak with soy source at the end.

Somehow in Paris I found that I can taste 'Burned' thing better - caramel, sweet beer, burned onion, burned soy source.

I couldn't have hard French bread sandwiches but enjoyed all the other staff! My daughter commented that now I eat like little mouse.

Re: Shark bite - It's still try and error for me to HOW MUCH I have to explain when I confront other people's gaze. Children would be fine by tales but... Well I have to learn to live with it I suppose. I have purchased 'Scar fading system' on the internet. If it works in 8week (so they say), I will report here again.

R xx