But I wish I had refused RT. I'm guessing most of you hold up your hans in horror and shout "DON"T BE SO F'in STUPID"

Maybe your right, but let me try and explain my logic.

I had tonsil (one side only) cancer with a secondary in a lymph node in my neck. Two operations one to remove both tonsils on a radical neck disection to remove 12 glands (11 were clear)

The surgeon Mike Dilkes who is very highly regarded in cancer circles informed me that as far as he was concerned I was cancer free. He is part of the MDT at Barts Hospital and at my 1st post op meeting with him he informed me that the team thought I should have IMRT he assured me that this was a belt and braces approach and that IMRT was a significant improvement over traditional RT. I was than referred to a Barts oncologist Amen Sibtain.

He took me through everything explained the treatment and the benefits of IMRT, basically fewer and less side effects and those that I did get would not last. Specifically I was told that IMRT could avoid hitting all of my saliva glands so that I would still retain some and that what I did loose would return.

Like most i accepted this on face value and was more than happy that I was being offered the chance of this relatively rare treatment (at least in the UK)

I finished my IMRT in early June and at that point still retain a fair bit of my saliva, about 20% i would guess. By end of July things were about the same, then suddenly without warning my saliva gave out completely.

This totally knocked me for six mentally and physically, I went from sleeping 6 hours straight to waking every 45 minutes. I've gone from improving my eating realy well to losing weight again and back on the energy drinks. I'm now on anxiety pills to stopp me climbing the walls and sleeping tablets so that i can at least get 3 hours a night.

I saw the oncologist on the 11th, he was suprised my saliva gave up so late after treatment finnishing but was still confident that it would return withing six months.

Trouble is I can't bring my self to believe him. I have spoken to quite a few people who have had IMRT and lost their saliva and have yet to find anyone who has actually recovered saliva to a helpfull degree. I can't bear the thought of going through the rest of my life never being able to eat properly again or get to sleep without the need to pop yet another pill.

So back to my original point if i could go back to april and that first meeting with the Ocologist, knowing what i know now I would have refused treatment.

My reasoning

Both the surgeon and the oncologist told me there was no sign of Cancer, Surely the best option was a wait and see approach and lots of monitoring if it did recurr then that was the time for more treatment.

To through all this pain and distress the propect of a miserable future relying on anxiety pills to get me through the day and sleping tablets to get me through the night, not being able to leave the house without a bottle of water in my hand, never knowing what it's like to taste fillet steak again.

When I was told i had cancer one of the very first things i said to my wife was if they tell me I need cheemo or RT I'm going to refuse, God i wish i had.

Well Ian, my thouhts lie with you and your decision as my husband had all treatments necessary took away his last 6 months of enjoyment of the life he had left and eventually after all the horrific ops and RT and Chemo and peg insertion and horrific disfigurement he died.

He wished that he has just enjoyed his last 6 months with his young wife and accepted what he had. I am also a strong believer I will not have any treatment if this horrific disease strikes me.

Moira

Meant to mention also my husband lived near to you in Hemel Hempstead, I know you neck of the woods its beautiful there.

Hi! IanP,
Boy what a bitch, I wasn't given the option or choice as they never found the Primary Lode, so I said, "go ahead". There have been times when I wished that (and I even pondered over it) I had said NO but at the time the possibility of the treatment extending my life was more important so YES. My saliva disappeared almost immediately and my taste buds soon followed and apart from the taste of Sugary things and Salty things I have no taste left.
I too would love to eat Steak but I have removed that from my food list (Bugger), it has been 10 months since my treatment finished and I still have none. I have learnt to accept my loss and go on, I gave up the Meds early in the post RT/Chemo treatment and got through the nights with only a few interruptions of my sleep and drinking water at times is a bummer But it keeps my mouth & throat moist.
Joking aside since I contracted another type of Cancer in my Pancreas my nights have been better I seem to only wake up once and that is to pass water.
I am not one to harp but shouldn't you get on with living and enjoy your extended life as no one really knows what is the right choice. Cancer is a bitching bastard but it doesn't mean it is terminal, there are many members on this site that have beaten the bastard.
Stay Strong and bounce anything off me if you wish
Trev

Hi Ian

Without sitting down and having an in-depth talk about our experiences it is difficult to appreciate what each otherhas gone through. Personally I would discourage anybody from taking "anxiety" and sleeping pills. Don't you think our bodies have gone through enough without sticking more shit into them??

I finished my treatment nearly 14 months ago and, like you, have next to no saliva and very little taste buds. I was told to try and stimulate the buds with spicy concoctions like chilli and curry. Avoid boiled rice as that really does dry your mouth a good 'un! I find basmati or pilau rice a lot better. If you need fluid to help it down then drink milk...I find it so much better than water. For saliva replacement I use a spray called Glandosane. It comes in three flavours, natural (rather bland), lemon (haven't tried) and peppermint, which is the one I use.

I to suffer sleepless nights and find myself not going to bed until maybe 3 or 4 in the morning. Mind you, I feel so pants during the day that I can fall asleep at the drop of a hat during the day, which probably doesn't help my nights sleep.

As I said, I have been feeling so rough lately. My upper arms and legs have been aching to the point of hurting, I even ache when I wake up which isn't a good sign. My gp has been a great help, but I am still aware of the fact that he is a GENERAL practitioner. After YET ANOTHER blood test, he told me (just this week) that my thyroid may be borderline under active. He wanted me to wait three months and have another blood test. I gave him my best Paddington Bear hard stare and told him that I wasn't prepared to wait any longer, and added that I am feeling VERY, VERY rough. He has put me on Levothyroxine tablets (50 micrograms) and told me to have a blood test in four weeks. Although he warned me not to get my hopes up, I am just hoping that this is the cause of my lethegy/aches and I can then recover. I asked if this problem could be caused by radiotherapy and he said that it may well be.

My point of all this is that you need a good trusting relationship with your doctor. Don't be afraid to question them and change to someone who has a better grasp of your problems. I don't want anyone to get the violins out but you are lucky to have a wife who has gone through this with you and supported you. I live on my own (bliss!) and went/am going through the whole thing on my own. To make matters for those who care, I push everyone away and spurn any offers of help. I really am a real life Victor Meldrew!

In saying that, my biggest gripe is that there doesn't seem to much in the way of official support for us once we are declared "cancer free". It seems to be a case of seeing us for five years in ENT but not really being able to answer questions.

I don't want this post to be all doom and gloom so here is some good news. Just over a week ago I spent a few days looking after my friends two daughters, whom I love loads. When I left them I went to a small cafe I know that does lovely coffee. While I was there I notice that they had a rather appetising joint of pork. I thought it may of been a bit ambitious but what the hell, so I ordered a sandwich with apple sauce. I have to say that the meat was so tender and succulent and the sauce helped it down greatly. I managed the whole thing and thoroughly enjoyed it...in fact, I got a bit tearful as it was such a milestone. The bread dried my mouth out a bit but I helped it down with small mouthfuls of water. It would of been milk but the H2O was all I had to hand as I was driving...sorry officer!!

I think that these small things are all we can reasonably aim for at present Ian. We'd all love to stuff our faces with steak, chips and all the trimmings but at this stage it is all about baby steps. After what our bodies have been through, we are damn lucky to even manage what we do. This is all very well for me to say as I am the most impatient patient ever!

Anyhoo, I've gotta run as I am in training for the 2012 Olympics...I am determined to bring home the Gold for Cross Country Underwater Doughnut Eating!

All the best

Ray

Its simple really.Do you want to live or do you want to die? I am sure that my husband would love to be complaining about the side effects of his treatment if it meant he was alive and able to watch his daughter and our grandaughters grow up.

Oral cancer has one of the highest rates of recurrance and i have never heard of anyone with a secondary lymph node not having further treatment after surgery. Doctors would have to be clarevoyant to know if you were 100% cured.Imagine how you would feel in six months or a year if it came back

Rob sucked up every thing they threw at him,and yes when it recurred and he was diagnosed terminal he said he would never have had the treatment if he had known it wouldn't work.But he didn't,and neither did his doctors.He went to his grave knowing he had given it his best shot ,not just for himself ,but for his family and ultimately no one knows for sure if you are going to be one of the unlucky ones. Its a different ball game if you are given a poor prognosis from the outset then treatment options against quality of life are a real issue.

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

Well certainly some differences of opinion there and who's to say which is right and which is wrong, certainly not me. There are a couple of statements people have made which I would 100% disagree with, bu that's life we are not all made the same.

At the end of the day my post is pretty academic because i did choose to have the treatment and there is not a damn thing i can do about it now. Given the ups & downs we all have I might look back and think, yes it was a pretty stupid post and just get on with things the way i have in the past and try to make the best of it.


Cheers & keep smiling

Ian

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

Just get it off your chest Ian, that's what the board is for. Never regret anything!

Altogether now, "Regrets, I've had a few...."

I have no regrets with any treatment I have had.
My grief is how I look ,talk and eat now and its NOT going to get better

Before anyone judges anyone for a desision I do think they have had to had experienced it to comment.

Paul

Each persons experience is there own.
For me,
There's no way i'd have refused any of the treatment they threw at me. I was 22 when i went through R/T. I have virtualy no saliva at all and my saliva gave out within the first week of R/T. So i will go through the largest part of my life with virtualy nothing. & when i get a cold there is less than nothing! On top of no saliva i have no moisture at the back of my nose either. BUT do i regret it? Not at all.
I've got used to this new state of normality. I wash down every bite of food with a sip of water and there isn't anything i don't eat that way.
But i was determined to not go without. & although it took some time after treatment (about 6-8months) I got over the hardship of of it all and moved on. This is me now.
You can't live the rest of your life looking back and regretting the dicision to fight your cancer with evertything they had.
Because i think you'd regret it more if you HADN'T have had r/t and then 6months later you had a recurrance.

I had my RT when I was 28, as a result I dont have much saliva and it gave me trismus so I can only open my mouth about 3/4 of an inch. In the early days I could only open about 1/4 of an inch so it is slightly better.
I regretted having the RT in the beginning but as I've re-adjusted to the symptoms of it, I think it was the right thing to do. At the end of the day you've got to throw everything at it to minimise the chances of it coming back. Hagg.

Hi all,
My now once in while post.
In the first instance, I agree with Paul totally about actually having experienced it and the effetcs it has left on one. In some cases it may be marginal (like mine), others it may be worse then the cancer itself. Its the way one looks at it. Everyone cannot be positive and think what was done to them was acceptable. In Chelle's and Hagg's case, I fully agree that they accepted the medication what was going to be given to them - keeping their age factor in mind.
There are the others like me for example - who one cannot call "old" when I contracted the cancer - but its only withen myself I know what it feels like not being able to eat or drink orally at all. looking pretty is fine - but not being able to do something that is so natural is the worst punishment that can be inflicted. When I think back - even thats one regret I have - why did I opt for the treatment? I was naive and did not understand the full extent of what the medication was going to do to me. A few days before the radiation began - I was fine - able to eat, drink, smoke and be merry and just a few days into the medication my whole life was shattered (its made me into a great actor though). The medication made not just me miserable but even all those around me and when I think if I had not accepted the treatment, the best that could have happened was live, let live and die. On acceptance - I now have to live a life which is a facade as if I dont - it will hurt so many people. All what I loved to do is somewhere down there in the drain - washed away into the damn sewer - my passion for travelling, my passion for work - everything. To add to all this I have to see my sons and wife - worried each time I sleep a little more as they feel somethingis wrong. Its not an issue of being lucky of being around to see them grow - its more of an issue of their reactions. If I had not gone in for the treatment - there would have been so many pros then cons.
01. I would have died a pretty reasonably painless death
02. Over all these years, my sons would have grown up without getting tense everytime they see me.
03. My wife would also have the liberty do as she likes and not worry about making me comfortable every day and even when she goes out calling every few miniutes to check on me.
04. Okay - finances were not too much of a problem, I accept this. However, the amount saved would have been a massive amount.
05. With time I would have become a memory and life would carry on. Instead here life is carrying on and causing more problems then solutions.
I cannot think of an cons - there are just pro. This is my thinking and everyone is entitled to their opinions.The sad part is that when I opted for the treatment - I did not think I would have to cling on to a rope called "life" and hope I do not fall. If I had known what I would have to pay for clinging on - I would never have paid out(this is truth and not just saying it as I said then and say today - I was never scared of death - its only sad I never gave death an option!). All I now realise is - my one decsion to cling onto something which was no longer mine was the worst thing I did - which if I had not would have been a relief to so many people (maybe not at that moment - but in the course of time)and I.
I still consider my self as a Dead man Walking - one who lived his life but yet wants to cling on. I detest every minute of this facade but what the heck - its the icing on the cake of being miserable!! Even every night I hope (not pray!!), I dont wake up the next morning. It would have been much easier to go out in a "blaze of glory' - rather then like a sick old man - with every possible ailment.
Which would be better - think.

Ananth
** My signature below is how one wants to interpret it.

Oh boy Ananth what a sad post.
My beautiful husband sometimes thinks like you - he doesn't have a peg but what he can manage to eat isn't worth having. A once vibrant exciting man is now literally a shadow of his former self especially since his stroke in April - but do you know what - selfishly I still want him here despite everything and I'm sure your wife and family feel the same.
It's still a wonderful world.....and we have 2 gorgeous grandaughters who by their charm and mischief make life worthwhile - so come on everybody - keep on looking at the grass from the green side up!
Love to you all.
Margaret

I know there were times when my mum absolutely felt the same. The roller coaster of treatment made her ill, weary, regretting the path she had taken, sick tired and fed up.

Now 16 months down the line, she just says she is glad to be alive every single day.

She went on a trip to the seaside with the Cancer support group last weekend and her and dad called in a few cafes. She had taken a flask with soup (just in case) and they had a lovely day out.

She mourned the fact that they had to have contingency plans in the food dept until I pointed out to her that there was absolutely nothing abnormal about that at all..... she used to make use take flasks and sandwiches when we were young and they called it "our treat" LOL

Hi Margret and Hi Winnie,
Been quite a while. As as you said Margaret, your husband is a shadow of his former self and you want him to remain there because you are being selfish. I dont blame you to feel that way. Its very natural- having been a part of his life, your lives for years. Let me not take this as an example but rather put myself in that position.
I know my wife, my sons and my mother all love me very much and I also know they do their best to make and keep me comfortable. My point is why should they all be so selfish - why not let go of me - which would be blessing for all. I would be out of this misery, my wife will carry on as we had planned and my sons can keep growing just as I did when my father passed away.
Today, I think back and think of my dad and all that he gave me during his lifetime and what I have been able to pass on to my kids and I feel satisfied. Today my Dad is a memory - where its a stage I even forget the day he died. I am no longer in mourning and neither is anyone else - except I guess, my mother. I dont think I would call it mourning in her place but something that she misses at times. What I am glad is that my Dad died a quick fast death and did not have to suffer - he was fine one minute and just another he was not there - and he too I would say was not very old when he passed away. He was just about fifty six. Six years more then I will turn to be around the same.
Meanwhile, what have I done? - I may say, I saw my children grown up. Okay - thats fine - but at what cost. I saw them grow at the cost of childhood - something every child deserves. I made them mature much faster and that I feel I have robbed them of something very special. If I had not been around - I too, like my Dad, would have just become a faded memory but they would have had a proper childhood. Its not important that both parents should bring up children and we all know that.
My wife has wasted so much of her youth tending to me. I have robbed her of her youth and her dreams and ambitions. What she could have done eight years ago is something she will never get back and at what cost - of being selfish. Everyone tells me I am lucky to have lived and thats a laugh - I was dying the day I was diagnosed and its the medication that finally drove the last nail into my coffin. I do not blame anyone for their actions, however, I feel that by letting go - they will be doing me a great favor and it would be a blessing they are giving me. I think I can sum up the entire issue of being the dead man walking by stating exactly what my mother prays for everyday - that I die. I am not joking - she prays I die and find peace and I love her for that. In the same way, if my wife looked at things and would not be selfish, I would have been at peace and so would everyone around.
The thing I would have given to my family by death would and is far more greater then my being alive. My wife would have mourned for some time but having youth on her side - she would have been able to cope up well and fulfilled all her dreams.Life always goes on for the living and who knows she may have found another partner who would give her the same kind of love? My sons have a very strong family in my brothers and sister. They would have ensured that they enjoyed their childhood as they should have and not grown old before their time - so that when the end comes - it will be far harder to take. It would have given my mother who has really aged since my Dad died and then my cancer, some peace and not every time she shes me - she wants to break down.
I for one have stopped beliveing in God as there is nothing more life can throw at me which will hurt me. I have already been hit with everything and there is nothing left in the armoury that can hurt me anymore - except what is happening - keeping me alive to see my family suffer. Who is punishing who? My death is life for them and my being alive is a slow death for them.
Everyone at home believes in God and have some idol or another saying "this is God". I used to do the same and time ago - I went and threw out all the idols in my room into the river as if I was going to be punished for becoming a non believer - what could happen? I would die - that would be a great option. We hindus celebrate certain Gods "birhtdays" or the coming of the Gods and the eldest male member is supposed to do the rites. I refuse to do them - I dont bother about calling god to bless me. In fact its the the other way around (not to offend anyone here) and that is its not God but a Dog if one believes in idols.
I really dont know if any of the above actually makes any sense as I have just babbled away. The base factor is - my living is a curse not on me but my family. I have nothing against the cancer except he should have been tougher and not left me alive but dead. I have never ever said "why me?". Its life - it has to happen to someone and I was a chosen one and that is that - but to be a chosen one and still live a life like this is that life itself is cheating on me. I have to look happy all the time and give the impression on how tough I am - but I know withen myself giving that impression makes life a little more easier for everyone - not just my family but my friends to. I also know withen myself life would have been even more easier had I thought before going in for the treatment.
I am sorry for having babbled so much and truly again do not know if all that I have said makes any sense at all - I have just tried to put down my feelings that go through me day in and day out.
This does not apply to everyone. Noone wants to die even if one is completely bed ridden or is even a vegatable - is that fair? I dont think so. I do not want to be selfish by clinging on to life at whatever cost. This cost is an extremely high one I am paying - by holding on to a useless life all because I thought all would be okay. I should have realised there is no escape and decided there and then to live whatever time I may have had left a full complete life. I for one know that the cancer has returned but I dont know what is the time factor as I refuse to step inside a hospital foranything close to a treatment. The first mistake made has taught me a lesson - and one that I would pass on to my sons about life - to accept it as it comes and goes and not hang on to things that are useless.
Wow - that was heavy!! I am feeling much lighter now and once again am sorry if I have offended anyone or said anything one feels is directed to them as its not so. I also hope I have been able to make some sense of what is meant by being a "living dead man". I have outlived my life and have cheated death. I had led a full life with no regrets until this one regret came around - cheating death. I have learnt never to cheat on anyone again - not even death.
Thanks all,
Ananth

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