Well, I've finally gotten some sense out of the ENT office at RSHH; they are going to do a biopsy on the base of my tongue and a modified neck dissection on the left side of my neck next thursday; the only problem is that the dissection was not spoken about in my last consultation, and I am still wondering about a second opinion. Has anyone had experience at the Southampton Hospitals for treatment/surgery? And is a second opinion a good idea

No Surrender

Mike Masterson

The trouble is Garance...is that all the consultants and medical writers try to generalise oral cancers and often underestimate the intensity of the R/T, surgery, and what it does to you. When my consultant tries to pep me up with comments such as: "you are looking admirably slim" ....to me it means unhealthy looking and under weight. Before treatment he told me I would experience some soreness and some pain....not nuclear war style RAD burns and pain that morphine could'nt stop. The only way anybody can know what its like to go through is to have it done to themselves. Nothing quite like the real experience.

I totally agree with you Steve. I found that the consultants seem to play down the side effects of the treatment. I was told I would feel a 'bit' tired and I would have a 'bit' redness to my neck.........that was the understatement of the century!!
Even now 6 months after treatment I am very tired just doing everyday stuff. As for the burns on my neck, my skin was falling off!I had a nurse come in everyday to change dressings, hardly a little redness
I just wish they could tell us how it is, hiding it doesn't help anyone, I wanted to know all the gory details so I was prepared. It actually made me feel like I was exagerating my symptoms because they played them down.

Maybe it should be part of their training to have to go through a course of RADs and then they would be in a position to tell patients how it REALLY is.
Maybe not.. I wouldn't wish that on anyone.

Best wishes
Tracey

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

Absolutely Tracey.
I actually started to feel a little guilty for being so ill, and every time I saw my consultant I felt as though perhaps I was the worst patient on record because of my persistant moaning about the dryness, and stiffness in my neck, the pain, the burns, etc etc etc. Still a bit angry actually about the lack of truth before it started, and i don't want to resent the man who...essentially saved my life. Strange scenario isnt it.

I agree with Steve and Tracey. The consultant was very relaxed about deafness in your left ear, burns, sore throats he never mentioned anything about the burns that required dressing daily as it was raw skin, and the redness and soreness is still there 56 days after RT finished. He never mentioned anything about the mouth ulcers either come to think of that!

However, at least his registrar had more about him on what it was going to be like!

Well, It all begins for real tomorrow; I'm off to Southampton for a modified neck dissection, and laser surgery on the base of my tonue thursday am! I'm not sure what the extent of the surgery will be, but I am glad to finally get rid of this monster! Thank you for all of your information and support, and I will keep you informed of my outcome.

No Surrender

Mike Masterson

GOOD LUCK MIKE I'll be thinking of you. Hope all goes well and the outcome is better than you dared hope for.

All my best wishes go with you Mike. Will be thinking of you. Love Michelle.x

hi, i just wondered if someone could help me. My cousin is 46 and has cancer on the base of her tongue, they have oprated on her neck and taken all her saliva gland thyroyd glands and two arteries, she is now haveing radio and chemo she is having a really tough time as every one she has known and loved with this terrible illness has died. I would like some positive input on how i can make her feel better so she can carry on with her treatment as she is seriously thinking of interrupting it. thank for your help

hi my name is Yolanda and my cousin has cancer on the base of the tongue and i think that with all your imput ill be able to help her.

Hello Yolanda, you can tell your cousin that there are people that have lived with this horrible disease for almost 17 years. I can honestly save however that those 17 years have been harder than most. That there have been tears, fears, pain, loss of friends & family, hospital stays, rehab, chemo, radiation, and so so much more. The good side is I have got to see my 2 children grow up, marry have grandchildren. I have got to love my husband, my TRUE friends, my wonderful family. I survived. When all the books, magazines, articles say that 5 years is as long as you will make it....Well I guess for some of us, that just isn't the case...Best of luck to you and your cousin. I will pray that she has the BEST doctor ever....Always, Vicki Lynn

Well, I'm off to RSH to find out about staging and treatment; hopefully there will be no suprises there. surgery went well, but I'm still dealing with muscle spasms in my head and neck; hopefully these will go away.

No Surrender

Mike Masterson

If there is a surprise I hope it's a good one!
Await your update, keep getting better.
Hope the spasms don't make you spill your beer!
Sue

Hello Vicki Lynn, I want to thank you for answering so quick and giving us a bit of hope and im sure that this little bit of information will help my cousin.Thank you and god bless you