Hi all

Just added Vicki's Story to the web site.

Photos will be added soon...

Krishan :coffee:

Read your story Vicki and I see you have been so through much. You have been very stoical and brave about it all. I admire your guts to keep on wanting to win through.

Two odd things I'd like to comment on.

Firstly a medical point. You say the radiotherapy was awful. Yes I agree it was awful. Almost like being punished. I doubt if hell could be worse or more drying and the pain is so right in your face so to speak. Having had this treatment all over my face and neck I sometimes think I really did experience hell on earth for the dehydration and on fire feeling within the tongue.

Radiotherapy to the throat is totally underestimated and dismissed by those who have never experienced it. They think throat radiotherapy is the same as breast or prostate radiotherapy. It can never be the same. They forget that the neck/throat area affects so many facets of life - we speak, breathe, eat, taste, drink, kiss, choke even smile through this area.

Secondly it may seem vain to many, but for me I feel 80% better when I am washed and brushed up. Like you I wanted to wash my hair everyday and have to be quite immobile not to drag myself through the process. Washing my hair and general grooming makes me feel human and I think the benefits of this are underestimated by others (family)who say it doesn't matter. If you have always done this daily as a matter of course it is important to feel that control when so much other control has gone.

Do you know one of the things I have hated about having cancer Vicki is getting those well meaning messages sent at random in email about smelling the roses etc because life is short.

I feel so insulted about them - I have like you always noticed my environment - the sunsets and the smells, colours and tunes that bring to mind golden days and ordinary days. I certainly don't need telling in emails from supposedly sick patients in chain letters that I have never noticed the rainbow etc.

If any of us are brave it is because there is no choice, but to carry on and work through the ordeal and trying to come through this with success. The bravery is in coping with the changes as well as pains. Life is different as you say and I know my life has very different physical symptoms than yours. But it is still different from before and it would be impossible not to be acutely aware of that difference. Coping is what it is all about and some like you cope better than others even with the ten times more pain you have.

Perhaps its like life in general, some people just cope with life better than others. With this we have down days and up days, worries and fears, but pull ourselves back up again whilst some can never do that even with a very ordinary everyday problem let alone a life threatening illness.

I get just as mad about those ribbons people wear for every illness or support group ever invented - they really make me mad. They are so self congratulatory. It's an easy task to pin on a ribbon when far removed from the real problem. Much harder to look a victim of a disease in the eye when they mumble or shock the onlooker by the less than average appearance after the ravages of treatment.

<<<I am a long long way from being cured or healed. I am a long way from anywhere right now, but I am alive. I can feel. I can breathe>..>>

But wanting to be cured and healed sets you far apart from those who just give up and give in to this.

I am ranting a bit here so will close. Anger and frustration at others are symptoms we forget about too. Paul has mentioned this often with his speech problems. Isn't it good we can let off steam here.

Hello to Pauline & Vicki.

I've just read your postings of today.

What wonderfully strong people you both are. I don't think there's a word in your messages with which I can disagree.

Just makes me realise how trite my messages are.

Thank you ladies, keep them coming - please

Vicki's story gives me GREAT hope Pikeman.

When first diagnosed with SCC we think that's it, I've had it, life is over. But as Vicki says above we cling on, as for most of us, even with the post treatment problems life makes us feel good.

All the stories that people are still hanging on in 10 or many more years down the line are very encouraging compared to the despair I felt 2 years ago at diagnosis.

There seem to be 2 ways to look at this. Be encouraged or discouraged. I choose to be encouraged and thank Vicki for giving me an insight into her life and seeing what determined people exist on this earth.

I am sure that wanting to survive has a huge impact on outcome.

Pauline,

I wholeheartedly second everything you say�. You know Pauline, when I was told I would need Radiotherapy treatment (Only 20), a mere trite compared to what most of you have been through. I came across your diaries, It really was a godsend to me. Everything you described, I experienced right down to a �T�. It made me feel as though I was not alone in what I was going through and I thank you for that.

Like you and Vicki Lynn I have never taken the joys of life for granted, and have always braved the storm when bad tidings hit. Just like cancer. I genuinely believe, that if you have the determination to� and the will you can conquer. I know that is relatively easy for me to say when you compare me to the awful battle Vicki Lynn and many other have to endure, but like all of you, at one point I did not know which way my life was going

I remember once my daughter looking at me, this was when I had lost almost three stones. (Luckily I had the foresight to stuff my face with everything fattening before treatment), so I had actually put on weight, before starting to take it off. Anyway, my daughter begged me to go to bed, I could sense that she was thinking my Mums not going to last. I looked at her shiny huge brown eyes and said: �You know Nikki I know I have to die sometime � but it certainly will not be because of cancer�. I truly believe that.

For the first time in over two years I have hit that Golf Course, completing 18 holes � �Nae problem.� Almost hit a toad � thought they were disgusting creatures, but said to myself your not such a bad creature after all.

Yesterday was a good day, as was today. Tomorrow is another day.

Take Care

Rosemary

Hi All,

Just had to say that I think you are all wonderfully brave and courageous people. After reading some of your stories, having had mouth cancer myself for the past 6 years I thank my lucky stars that I seem to have got off lightly compared to most of you (if you can have cancer lightly!) As I have found out from this website there is always someone out there worse off than you, and I take my hat off to you all.

I always seemed to know that I would beat this thing and have been determined right from the start that it would not get the better of me. In fact I probably spit in the eye of Cancer as I will not, and have not, altered one aspect of my life since having Cancer. My cure is Think Positive, Act Positive and Don't give up. If you don't, why bother going through the treatment in the first place.

I know from your notes that there are a lot of people out there who also feel this way, and I know in my heart that you will win.

Take care
Jules

Hey Jules

My sentiments exactly. Why go to hell and back just to quit.

Take Care

Rosemary

Sorry for the delay in getting back to you, but I have been away to see my Mum - she is 87 so I live in hope to follow in her footsteps.

I think it's great that we can all encourage each other. Vicki,Rosemary and Jules I am all too aware that the symptoms I have had are nothing compared with descriptions I have read here and on the ACOR Listserv. I think how we perceive the treatments and pains is important.

What continues to amaze me is that people have such terrible treatments done to them time after time, and such radical surgery yet much of their personality does remain the same.

I bet Vicki has always been a very very determined personality just like you Jules and you also Rosemary.

<<Think Positive, Act Positive and Don't Give Up.>>

We ought to make that a site motto.

I'm glad my diary was useful to you Rosemary. It was a real effort to do at the time. I think I understand how you feel because when I read diaries like Vickis I find it gives me the information not just about symptoms and surgery that may one day happen to me, but about feelings of disbelief which are somehow never quite fully understood by medical staff.

Pikeman you are never trite. But I will be when I tell you I am now eating waffles!!! This toasty joke may run and run.