Hello everyone I,m new here, only just found this site.

I was diagnosed with SCC of left tonsil in August 2005 a comnplete shock as I have never been a smoker or a heavy drinker.

In September I had major surgery to remove tumour and a neck dissection complete with a 'flap'.

The histology showed that they had got a good margin around the tumour except where it went very deep and my lymph nodes were clear.

I was unfortunate enough to get MRSA in my arm where they took the donor skin, vein and artery for the flap from but with strong anti biotics it healed.

I then had 6 weeks of radiotherapy which came to an end on 30th December 2005 so I went into 2006 knowing that all treatment had finished but feeling the worst!!

Anyway it's now 1 year on from initial diagnosis and I am doing really well, the main after effects are - dry mouth, slight speech impediment, limited mouth opening and difficulty eating some foods. Otherwise life is good and I feel I have had a lucky escape things could have been much worse.

The radiotherapy wasn't as bad as I had been led to believe it just made me feel very tired and lethargic. I had a PEG tube so I was able to get all the nutrition I needed.

I managed to start eating again by end Jan and had PEG out mid Feb I now have 2 belly buttons!!

Only time will tell if this is the end of my story.

Best regards


Rosie

Welcome, Rosie. It is very good to hear your story and that you are doing well. People who come here newly diagnosed need to know about those of us who have come out the other side. And we can always use another member in the Two Belly Button Club!

Hello Rosie and welcome.
My hubby and I are also Brits but live in Georgia.
I am glad to see you are doing well, hang with us a while maybe you can pass some advice on to others.
It is important for our newcomers to know there is light at the end of that long tunnel.
Cheers
Marica

Welcome Rosie and may you continue to do well. Congratulations on getting through your first year. What a great attitude you have on this.
Regards JoAnne

Welcome Rosie- Good for you! {but my husband has you beat-he has 3 belly buttons Amy

Hello again everyone

Many thanks for your replies. I told my story in a very factual way, but underneath the facts there was all the emotion to deal with as well. There were days immediately after the intial surgery when I felt I was at the end of my endurance, that awful tracheotomy! feeling like I had someone elses tongue in my mouth (and not in a good way!), not being able to sleep, just feeling so helpless! and I hated to NG tube, I was so desparate to be able to eat again, but when the time came I found I didn't know how to swallow! it took about 2 weeks to be able to manage anything without choking.

My husband and family were a tremendous support, but I knew they were suffering as well - not knowing if I would come through it all.

I was in hospital for 5 weeks but once I came out I really started to feel so much better, but then I knew I had the dreaded radiotherapy to come - I was really hoping I wouldn't need it. I was so scared of what it my do to me, but as I said it wasn't so bad. Things never got so painful that I had to take morphine but the worst was the awful taste that developed in my mouth - it was like a living entity lurking there!!

The worst I felt was about 2 weeks after the end of RT, I developed a horrible cold and for the first time just took to my bed for 2 days!
My taste buds started to recover after about 4 weeks. I became very inventive at making soup concoctions and smoothies. Porridge became a large part of my diet and still is.

But when I look back all this seems so long ago, the worst thing now is knowing that this could come back at any tme and I might not even know - I had very few symptoms although I still have regular check ups - this type of cancer seems to be very stealthy.

Anyway I think I've rambled on enough, would love to hear from anyone who has experienced similar.

Best regards to all

Rosie

Hi Rosie,
Like you, I was diagnosed with left tonsil cancer and it was 5 years ago; so I am your 'elder sister'. If you read the brief description under my name, you can tell how advanced my stage of cancer was at that time. Unlike you, I didn't have surgery or feeding tube. I did undergo similar emotional downturn, feeling very depressed despite the support given by my husband and family. Most patients experience the anxiety and fear of the disease returning one day. This is something beyond our control and over worrying will just do more harm than good to our health. If you have regular check ups and are closely monitored by responsible doctors, you need not worry. You are lucky because you have people on this forum give you support and share with you their experience. I felt so lonely at my time because no one around me had gone through such sufferings and they really didn't know how to help me.
Just stay positive and enjoy every moment you have with your family and friends. You are welcome to email me if you want to hear more about my story.

Karen

Hi Rosie,

I think cancer is a life altering experience and if you didn't feel anxious, depressed, worried, unable to sleep at times you really would be nuts.

My husband and I are still having those moments but they're getting better. Do we all worry about the cancer coming back? Yes, it's part of our new normal. What is wonderful about this site are the many survivors who continue to share their experiences and support.

Look at the postings on the general board for odds of recurrence/great quotes - we had a very productive exchange on our insights and fears and you may find it helpful.

Regards JoAnne

Hi everyone

Thank you all so much for taking time to reply, it's good to know that there are others who have had similar experiences, when I was first diagnosed I didn;t want to know too much, I was scared enough, but now I'm well on the road to recovery I find that I really want to know other peoples stories.

It's a bit like having a baby isn't it you find yourself wanting to communicate with others in the same boat!!