Hi everybody,

My name is Rosie and I was diagnosed with a tumour in my left tonsil in August 2005, since then I have had major surgery and 6 weeks of radiotherapy. The whole experience left me feeling battered and bruised and wondering what I had done to deserve this. Slowly I came to realise that no one DESERVES cancer but sometimes bad things happen and one just has to deal with it.

My way of dealing with it was to try and keep everything 'normal'. At first friends and family di not know what to say to me, but I told them that I was happy to talk about it because talking about it made it less scary. My team of consultants, nurses, dieticians, physiotherapists etc were wonderful I can't praise the NHS enough.

I am now left with a slight speech impediment and eating is not easy but generally I am now feeling well and have gone back to work albeit part time.

I know I still have a long way to go but it's a journey from which I will gain knowledge of myself and others and it hasn't all been bad!!

Best regards to all

Rosie

Dear Rosie.
It’s a shame you have not been on hear before as there are many people who can help and support you. I wish you well and I hope that you are now on the road to recovery. I too had a Tonsil Cancer as the primary and secondary neck cancer, all was removed with 2 operations. I had Radiotherapy and Chemo, as most people with this disease do. I am now 18 months past treatment and am enjoying a near to normal life as possible. Cream crackers with cheddar cheese is still a little tricky but we live in hope. Keep everyone informed of how you’re doing? We are interested.
Regards James

A beautiful post, Rose.

Your insight is inspirational. So glad you are now on the mend, physically and emotionally, and the worst of the ordeal seems to be behind you.

A "journey" it most certainly is... from the seering jolt of the diagnosis, through the trials of treatment and recovery... until you reach a place in your own being that is no longer angry or excessively fearful. When you said "it hasn't been all bad"... you said it all.

From my heart,

Melanie

To Melanie and James

Thank you so much for your replies, I wish I'd known about this site 9 months ago!!

From all that I've read here, I now realise that this type of cancer isn't so uncommon.

The thing I most struggle with is eating enough food and that I hate the sound of my own voice, ironically the job I do involves talking to people all the time on the telephone and in person, so far no-one has yet said "I'm sorry I can't understand you, can you please put me on to someone else" so I guess it must not be too bad, but to me, I sound muffled and indistinct.

Please keep in touch it's good to 'talk' without having to speak!!

Rosie

Rosie.
Why don't you tell us exactly what type of treatment and symptoms you have had? I had a radical neck dissection which, I was warned, such a procedure could leave me with speech problems, fortunately all went well and I was OK. You say you had Tonsil Cancer, was this treated by operation, radiation and chemo? You also have mentioned problems with eating enough food, is this because of dry mouth, tongue problems or other symptoms. Do you take supplements like high calorie milk shakes? If you share your experiences on the forum there are lots of lovely people like Melanie that will be pleased to help. I will do my best, but to be honest, now I am over the worst it's been along time since I was on the forum. But I thought it would be good if I can help people now, as I was helped so much in my desperate times. So Rosie tell us how you are, and what you need to know, I am sure you will get a lot of support from people who have been there, done that, and have the ‘ I’ve beaten the cancer shit ‘ T shirt
James

quote:

Originally posted by James Bagnell:
Rosie.
Why don't you tell us exactly what type of treatment and symptoms you have had? I had a radical neck dissection which, I was warned, such a procedure could leave me with speech problems, fortunately all went well and I was OK. You say you had Tonsil Cancer, was this treated by operation, radiation and chemo? You also have mentioned problems with eating enough food, is this because of dry mouth, tongue problems or other symptoms. Do you take supplements like high calorie milk shakes? If you share your experiences on the forum there are lots of lovely people like Melanie that will be pleased to help. I will do my best, but to be honest, now I am over the worst it's been along time since I was on the forum. But I thought it would be good if I can help people now, as I was helped so much in my desperate times. So Rosie tell us how you are, and what you need to know, I am sure you will get a lot of support from people who have been there, done that, and have the ‘ I’ve beaten the cancer shit ‘ T shirt
James

Hi James

Thank you for your message.

The treatment I had was - removal of tumour and a flap (a piece of flesh from my arm was taken along with a vein and an artery and stitched into the resulting hole that was left by removing the tumour) and a full neck disection to remove lymph nodes. I was in hospital for 5 weeks at the Radcliffe Infirmary in Oxford.

The histology showed that they had got a good margin around the tumour (which apparently was 4cm) except right at the back where it went deep and my lymph nodes were clear which was encouraging.

After recovering from that I then underwent 6 weeks of Radiotherapy which would hopefully 'mop' up any cancer cells that might have remained.This finished at the end of December 2005.

I went into 2006 knowing that treatment had finished but feeling the worst.

Slowly things have improved I no longer feel so wretched, but I feel that somewhere along the way I've lost my sparkle!!

The reason that eating is difficult is that I can't get my mouth open very far and the flap is quite bulky and seems to take up a lot of room in my mouth I also lost a couple of teeth at the back which they had to take out during my operation (which incidently lasted 13 hours).

I have now been referred again to physio to work on my mouth opening. (I had to have a lot of physio on my wrist where they took the donor piece from as I could barely move it after the op).

In answer to your question yes I do have the Scandishakes and I have one most days but I find them quite sweet and sickly. I'm eating 4 or 5 small meals per day, mostly weetabix, porridge, soup, yoghurts, mousse type desserts, and a pureed dinner! I can eat food that's not pureed but it takes me so long that before I'm even half way through it's gone cold!! and I feel it's more important to actually get the food inside me than it is to try and eat 'normally' I only weighed 7 stone before I was ill and always struggled to keep weight on me!

We're going on holiday soon and I am worried about how I will manage to find enough things to eat that I can manage.

I seem to have rambled on for ages, hope you don't lose the will to live whilst reading this!!

How have others made the transition from puree to solid?

Best regards to all

Rosie

Miss Rosie...

Just curious... Are you under the care of a nutritionist or, better yet, a Speech Pathologist? If not, ask your cancer care providers if a referral is appropriate in your case. (Note... In my part of the world, the field of Speech Pathology also covers swallowing therapy... and attempting to get patients to advance up the food consistency scale... pureed foods to soft foods to more solid food consistencies.)

My husband's radiotherapy (with chemo) caused his swallowing to fail completely; therefore, he was 100% tube fed. (We never had to think about oral eating or finding foods that work... so unfortunately I don't have any practical advice to offer in that department. Sure wish I did!)

You have been through hell and back, Rosie. I'm so glad to hear you say that things are improving. Your "sparkle", I promise, will return. I sense that you are normally a positive person with a good outlook. You are just tired and overwhelmed, and it is completely understandable considering all you have endured. I promise to pray specifically that your spark comes back in abundance... and normal intake of normal foods is in your not-so-distant future! Better days are coming, Rosie. Please know that we're pulling for you!

From my heart,

Melanie

Hello Rosie I have just read your posts and can identify with some of your problems post op. I also feel that I have too much flap in my mouth, although I have already had an operation to de-bulk the flap (have you been offered this?) I also share your concerns re eating, or rather finding the right foods that will slide down easily. If you have time and the inclination to read my case history I have made a few suggestions for liquidising foods, but I agree with you that going on holiday does pose a number of problems for us, unless we go 'self-catering' and take along a blender, or arrange with the hotel chef to have our memals pureed. Also, eating in public is an ordeal. My chin area is totally numb and so I have no sensation if I have 'dribbled'- all very distressing. All my bottom teeth went when my jawbone was replaced with bones from my legs so I have no means of chewing again. Hopefully you will eventually manage ever more solid foods until you are eating almost normally again. Your Speech Therapist will be able to help you with exercises to stretch your mouth, also with swallowing techniques (if not, I'm happy to pass on the tips she gave me if that would help)

If you are inclined to go back and read some of Vicki Lynn's posts I know that she has had problems in getting her mouth to open after radiotherapy. I think she was given the wooden sticks to stretch it open.

Regardless of all this, you do sound to be progressing really well. Keep smiling!
Brenda

Hello Rosie

Trismus is caused by damage to the muscles used for chewing. During surgery, trauma, or radiation therapy there is commonly secondary damage to the areas around the tumor site. As this damage heals, the body forms scar tissue at the site. As this scar tissue ages it becomes less flexible. These changes result in the limited jaw motion that is identified with trismus. Sometimes the soft tissue scarring can cause a tight scar band and it may be possible to release the scar surgically. You need to do your best at stretching the muscles as much as you can. Immediate post-operative and mandatory lifelong physiotherapy stretching exercises could improve mouth opening. Try using a Therabite device to overcome the limited opening. It is a more expensive (or you might borrow one through your surgeon) than using wooden tongue depressors but is more effective. It costs about £200 each but is light years ahead of tongue depressors and trismus screws.

Talk to your surgeon if you feel the flap in the mouth is too bulky.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Thank you Rosie.
You have been through a lot, so has poor Brenda. One thing that has always amazed me with this forum, we sit at home feeling completely miserable and feeling really down. You can’t eat properly, food taste horrid, you can’t open your mouth wide because it hurts and you really cannot see life improving. No one is as ill as you, and no one has had it as tough.
I felt like this for ages, (not suggesting you are). Then you speak to people on the forum and read the stories, the suffering and the pain and you cannot believe how bad some people have had it. 18 months on, I feel like a fraud. Ok I had 4 ops, 35 fractions of nuke rays and the Chemo juice, sore mouth, trismus, ulcers, I could not take any food for 4 months, dry mouth no taste etc etc. Now I am a new person, the only effect I really have now is dry mouth but that has improved greatly over the past 3 months, I only use 2 small blobs of Biotene a day.
All I am trying to say is that over time the body is a wonderful healer, I could never see me drinking a pint and eating fillet steak, now it’s no great problem.
The important thing for you is nutrition, I know the shakes taste horrid but they do provide the supplements you need, and you must persevere. You need good nutrition to heal the body, the better you heal the better you feel, the better you feel the more you eat, the more you eat the stronger you get, the stronger you get better you get.
My advice now is, go on holiday. Tell the people in the restaurants that you have a condition. I promise they will be sympathetic and helpful. You need a change, a break, a rest. I am sure your family do to.
Try and look on the bright side, summer is coming, the sun will be shining and you will improve, that I promise.
All the best. James.

Hi Eeverybody

Thanks for your messgaes and helpful information. As you say James - now that I've read more and more on this site I realise that I have come off quite lightly!

Im now off to make soup - bacon, peppers, butternut squash, onion and tomato anyone want some!

Luv

Rosie