Hi Kateman, I read your earlier posting and when I was in Hospital in the ward a visitor from another bed came oveer and said "Wyou been in a car crash" I wrote NO Cancer.
I feel a totally different person now, in my looks (very old) and my speech.
I have found it very hard to deal with being alone now and not sure if I will even come to terms with it all just as they say have to live with it.
When i GO OUT AND SEE MYSELF INA MIROR i LOK AND THINK WHOS THAT? AND IT STILLS UPSET ME.
i AM NOT SURE WHAT TO SAY TO YOU BUT WILL THINK ABOUT IT AND BE BACK.
aNANTH IS A GREAT GUY AND HE HAS HAD VERY WISE WORDS FOR ME IN THE PAST!
tRY TO RELAX AND TRY TO GO OUT, i KNOW ITS VERY DIFFICULT i OFTEN FEEL LIKE i AM IN A GLASS BUBBLE, pOEPLE TELL ME ITS MY WAY OF COPING ??

pAUL

Thanks for the prompt help in replying to my last post.

I am afraid that I have forgotten what fun, joy and happiness are - but agree that the starting point is being alive, and recognising that is such a wonderful thing. I am still in a state of shock at the diagnosis and subsequent surgery and chemo+radio, I am still grieving for what I have lost. I have had to be so self-controlled, in holding myself together and not surrendering to the overwhelming fear, that I have not progressed in adjusting to my condition.

I keep telling myself how lucky I am; for instance that I am not in pain, and that I have a very good support system. I try to find the little pleasures that are available to me, like a good night's sleep thanks to oramorph (a little naughty I know). But the loss just seems so bewildering, so unbelievable.

On counselling. My counsellor has been such a support for me, I see her weekly and she has been making it a home visit since the operation. It has helped that I started with her before the surgery. Without the counselling (provided by a local voluntary organisation) I would be in a much worse state. The only time that I did not see her was during the very bad part of the chemo+radio. I am also fortunate in that Kate has counselling experience and that she has helped me with a bit of para CBT when I have had the start of a panic attack.

On anti-depressants. I can appreciate that they fulfil a function equivalent to painkillers for a physical pain. I am not too sure what I am afraid of, side effects or dependence? Or maybe them not working?

How to cope? How to minimise the mental pain? How to find a way of being a humane and understanding person with wisdom and love? - instead of a scared and needy, broken down piece of wreckage?

All of the above is abstract. I am terrified of the cancer coming back. I feel dirtied by the facial disfigurement. I am convinced that my speech impediment will come across as a mental handicap. I must return to work, but know that I cannot do my old job. I have lost the sense of self-worth that I always had.

That is where I am now, but I must move forward. Thanks for sharing your own suffering and insights, I appreciate all responses.

As a postscript on spirituality. I have been an atheist most of my life, but not an extreme anti-religious type - I always saw a psychological truth in aspects of religion. I would now describe myself as an agnostic, partly as a recognition of the loss of certainties that I now feel since my illness.

I would say that the most striking aspect of the illness is how humbled I have been, what I need to do now is overcome the sense of powerlessness.

Best wishes to all

Martyn

Hi Bev

A good book for you to start with to find out about mindfulness would be "Wherever you go, there you are" by Jon Kabat-Zinn, published by Piatkus. This is easily readable and you should find it interesting.

I will get back to you with some more suggestions as they come to me.

Hope you are OK.

Love

Gwyn xx

Hello again Martin

You are in a very hard place at the moment but you appear to have a lot of insight about the way you are feeling and why this is; this is a good start. You are obviously used to being a strong person that other people lean on. Be assured that you are still that person - you are just taking a break while you adjust to the awful thing that has happened to you. As I said before, it is early days yet and you should try not to be so hard on yourself. Take things slowly and carefully - you will get back to being you. We are all terrified that the cancer will return, but as time passes this fear does fade, though it never completely disappears.

You speak of going back to work; what was your old job and why is it impossible for you to do it now?

I share your uncertainty about spiritual matters. I think I have probably always been agnostic, but it would feel good to be certain of something.

Best wishes
Gwyn

A bit of good news. Today I had a new obdurator plate fitted and the improvement in speech is marked. Difficult to quantify, but certainly a clear advance. The effect on self-confidence is noticeable too. I am very happy about that.

Best wishes

Martyn

Dear Martyn,

Well, you seem cheerful today and trust me this news is going to make everyone on the forum really happy as it clearly indicates you are really pushing hard to climb out of that hole and take on the world. You know Martyn, at times the depression is so bad that one feels what the heck am I alive for? Ponder over this question and the answer will be that you have been kept alive for a meaning of which you dont know as yet. Getting cancer too is looked upon in many ways - I know some Buddhists who claim that each one of us who have had this cancer are a part of the Buddha and are in this world to take on the pain of the world upon ourselves - striving the world to become a happier place to live in. I cannot claim to say either are true but all I know is that you are alive and things always fall into place with time. I really do not want to lecture you in anyway - but am penning this down as a concerned friend. We have all been through some kind of a hell and have managed to cheat the cancer. This itself is a major achievement and then to start living life accepting all the shortcomings the cancer has left behind. A lot of lessons can be learnt from our friend Cancer - to value your life, not take anyone or anything for granted, when they say dont smoke or drink - hear them out, you will see the world in a different light. Will you do me a favour and just once sit alone on a nice comfortable sofa and think of each good thing that has come around because of cancer. Dont think negetively - think of only the pros and not the cons. The pros may be you have managed to make more time for someone you love, you have stopped slaving your days out and have got that long deserved rest, look at the blue sky (unless it is overcats !!), look and think of how things happen. It will be astonishing what all will flash across your mind. Even the smallest of things will start looking like giant strides towards happiness and that is what we want from you - happiness.

I am not really known for my serious lectures but I dont know why, I felt I must write to you an put down whatever came into my mind and thats what I have done. If I have said something that may upset you, I apologise and will not repeat my mistake/s twice. Keep posting Martyn and you know you are a part ofa very special family here.
Take care, lots of love and a warm hug (My hugs have become famous!),
Ananth

Hi Martyn
I am thinking of you too and as Ananth says this is a special family.

I also think Ananth is right in terms of thinking of the good things and not of the bad however overwhelming they are. Before anybody else says it there are no positives as such to having cancer however my interpretion of what Ananth is saying is that there are things that we may do as a result of being diagnosed with cancer that we may not have done without the horror of cancer to make us do it. I used to be a workaholic and within a very short space of time after diagnosis when the future and time left was no longer indeterminate i have chnaged my work ethic so that I still work hard but not uncontrollably as now I have other things I want to do.

We're all happy that something went well for you today and of course hope that tomorrow a small step forward will also happen. Take care.

Dear Patricia,

You have interpreted my thoughts really perfectly. I was also a complete workaholic and would spend 16 to 18 hours in the office when I was in India and then if I was out of the country travelling - preparing all the presentations etc. would not really get me to rest. Its tough to believe - but I used to actually keep some extra clothes in my office in case I slept over and had a lot of work. The only luxury I indulged was the gym that I got sanctioned and would work out to destress myself every day for one hour or would make sure the hotel I was booked into had a gym. The main reason for this over working was because I really enjoyed my job and there was nothing else that really mattered to me. The company (Mercedes Benz) was everything to me and I was looked after very well too. It wasa dream job but as I said the working hours were just crazy and not because the Company demanded it but because I wanted to climb the corporate ladder faster then anyone else. The cost of the climb was my cancer - too much smoking and voice abuse. Things as you say, have changed now. I spend more time with my wife and kids, derive small pleasures of sitting and chatting with mum , my sons and my wife. I do not travel anymore and that gives me a lot of time to go out with the family and friends and just have fun - which I missed out for so long.

I think you summed that up really well Patricia.

Lots of love, xxx and my special hugs,
Ananth

Ananth and Patricia,

Yes, I agree that there are good things that have come out of having had cancer. I have become a more mellow and understanding person -- I was an uptight perfectionist before, and so judgemental. I love my wife in a different way, far deeper. So many non-essential things have gone from my consciousness. I do not get angry anymore. I see some gains in self-understanding through the counselling that I have had.

I will think about this more, and make another posting.

Best wishes

Martyn

Dear Martyn,
All I can add is thank you for understanding our concern for you as you are sa part of the family and we all would love to smile and chatter away like we all do. Yes - we are open to things regarding cancer and there are a lot of people here who can guide you through most of your problems. I only get around making everyone have a good life.

Smile my friend - it looks much better on your face. Always remember you are special and noone can take that away from you. Keep this in mind and take your steps one at a time and become happy as a lark. Worries everyone has, but if you notice everthing seems to fall into place when you think you just cannot climb out of the hole.
Lots of love and do read the jokes - it may bring some laughs or at least smile across your face.

Ananth

Hello Martyn

So pleased to hear that something good has happened for you. It is surprising what a difference even little things can make.

I think we must all be changed to some extent by our experiences of cancer; I think Patricia has expressed almost exactly what has happened to me - I can think of so many other things I want to do now as well as work.

As Patricia and Ananth have said we are all thinking of you and hoping for more positive things for you.

Best wishes

Gwyn

Update on the new obdurator.

The improvement in speech continues. I had an hour session with my counsellor today; and the clarity, fluency and projection was so noticeable. This also contributed to the counselling process itself.

However that dark negative voice inside is still there. It said that this new speech does not belong to me, but is the product of a piece of plastic and wire. I am now scared that it will get broken and the technician will not be able to make another one as good. I am fighting that negative take.

Reason for it is the feeling of powerlessness, and the sense of being unlucky. Discussed this with counsellor and found a way to minimise that kind of thinking.

Other good news is that I went to my GP this morning and he informed me that my blood results are all ok after chemo+radio. He had been concerned and had been testing me over the last few weeks. Funny that the hospital had not been testing blood; do you think that they expected the GP to keep an eye on things like that? Or were they confident that there was no need to look at the blood? I am sometimes so puzzled by the medical world.

I must build up my speech at weekend, my normal visitors are not due this weekend so I will have to concentrate on Kate and my son.

One thing that I have lost since the operation is the art of conversation. All verbal exchanges have been functional and centred on me. I so look forward to regaining the natural world of speech.

Best wishes to all

Martyn

quote:

Originally posted by bev:
hi gwyn martyn ananth and everyone
thanks for your recent posts gwyn and martyn they really are deep and meaningful . do you know of any basic books which i could read to reflect on these sciences something not too hard to digest
i am all for self help as a complimentary therapy
thanks bev x

Self Hypnotism, Leslie M. LeCron.

I bought this book in 1970. Available on ebay. Also google this guy & you will find tons of stuff on him.

My speech has certainly improved since the new obturator (is that how you spell it?) and there has been a linked increase in my self confidence. So much so that I can picture returning (part time of course) to work. Today I bit the bullet and emailed my manager asking about the procedure etc. I have been off for 9 months and am very apprehensive.

Main issue is my appearance. I have a huge hole where my mouth used to be, and a very squashed nose. There are certainly worse facial disfigurements. And compared to what I looked like a few months ago I am much better. The post-op swelling made worse by radiotherapy has mostly gone. Just bags under eyes and swollen neck.

Is it a case of just doing it? I look like this now, and I am lucky to be alive - and I don't know how long I've got.

Anyway it will be a while if I do return.

On voice. Although better it sounds a higher register than before (a friend recorded it for me) and I sound too young. Weird.

Martyn

Dear Martyn,
This is really great news and truly inspiring. You have really gone from strenght to strength and now in fact you are planning to get back to work.

I really dont imagine the facial features to play a major role in rejoing work as all your collegues are aware of all that you have been through and am sure will go all out to help you resettle yourself.

Why do you even think as to "how long"- becasue you have crossed that frontier and beyond that stage. Now is the time to get you life back. It also must have been great to hear your voice sounding young again. I am sure this too will help you with your outllok towards life and resettling the same.

Congratulations once again, Martyn.
Take care,
Ananth