Morning All, I am a bit confused at the things people seem to think about Radiotherapy.


I have said in the past and still upheld that the Radiotherapy was alot more painful and destroying of any future quality of life than the actual operation.
After Radiotherapy I have now imapired speech, part tongue removed, eating (well we all know that one) CONSTANT tired out, sleep one or two hours at a time, Pain in right shoulder and arm
the list is endless.
As for my teeth well they are all black stumps now and just time before they take them out and willl almost certainly(according to my Dentist at Max Fax) get osteoradporosis which is very painful last for months and involves hospital stays.
I had no idea that all this would happen they NEVER told me,I had to have it as my Cancer was so far gone when they detected it(had one biopsy at local Hospital weeks before said "I WAS CLEAR")no choice but to have Radiotherapy.
I was also told it is in your body for the rest of your life and it seems to me it eats away at your mouth one way or another.
I hope I am misinformed but do not think so

Paul

Paul, I know that you have had your hardest of times with the radiation. However I was told that it is only in the body for 2 years tops. I am not so tired from the radiation I think as it is the constant pain from the surgery. I am the opposite of you. Go figure. The surgery has left me with a head that weighs a ton. With a mouth that just cannot open up. There is no future in every eating again,,not anything worth talking about. My future in being WINED AND DINED are over. There will never be another resturant for me. A life of smelling like the tube that I have to wear to get any type of noursihment. The arm, Oh the arm that doesn't want to work anymore. My bra is constintly falling off that shoulder because there is no way to keep in on. Can't go without a bra,,nust to well built for that. Swelling, LORD the swelling, it is all over. My cheeks, mt neck, my legs, my knees, my feet and my hands and fingers. I haven't been able to wear my wedding band since the day I went into the hospital. I can't wear any of my shoes, had to buy new ones,bigger, so I can wear them. Socks, LOL, they cut ridges into my legs. I have a hard time talking because I can't open my mouth to make the movements it takes. So At this point I am finding it hard to have a good outlook one things. I like you am ready to scream. I know I will never have me back, but I would love to have something that works besides my mind. The rest of me is and has fallen apart. LORD HELP US ALL. Vicki

My beautiful friend Vicki,I dont know what to say or where to start.
I am in such delema with the Cancer apart from the other problems physically I have.
My mouth is so sore, my teeth hurt like hell, I lay down and feel like I am choking and now my dry mouth has got worse and worse.
I too am lopsided and none of my clothes fit me properly even the new ones I bought for Retail Therapy look a mess.
I feel so sorry for you and all that you go through but your strong unlike me getting weaker by the day.

Paul

Hi Paul and Vicki,

First, may I say how deeply impressed by the bravery and tenancity you both show in the face of such adversity. While suffering so much over an exteded period you are still able to offer advice and comfort to others. I salute you both.

Your advice and information can be so enlightening, for example: I thought that the effects of radiotherapy treatment would wear off in one to three months and then, after that, (on the assumption that the treatment was successful), I would be back to my old self. How naive!

Again I thought that the loss of my taste buds following surgery on my tongue base, these would return again totally wihin a few months. Again, naive.

Fighting to retain my weight (two months after cease treatment) I was shocked to learn someone is still struggling after FIVE years!
Also, the suggestion that radiation therapy may NEVER leave ones body. Scary stuff. But, to know the reality of ones situation is far better I think, than when things do not recover as anticipated, the mind thinks up a host of horrendous possibilities. That I do know!

During my discussions with my various specialists I thought I had asked the right questions, clearly not. But where did I get the optimistic ideas before being enlightened by fellow sufferers? Self induced I suppose.

Anyway, again I thank Paul and Vicki and would like them to know how much I admire them for many reasons including reaching out to others so thoughfully during such trying times.

Hi Fridge, I'm always a bit reluctant to comment on radiotherapy and its effects.

I know from both Vikki and Paul what suffering they've been through and indeed are still struggling to cope with.

However, my own experience with radiotherapy has been totally different. It's been just a little a little over 3 years since I had surgery which involved total removal of my tongue followed by a course of radiotherapy.

I had absolutely no ill effects from the therapy no burning. sickness - nothing other than tiredness which wore off after about 6 months.

Obviously I lost my sense of tase but this was mainly due to the surgery. I cannot take solid food and get all my nourishment via a PEG (feeding tube), again due to the surgery. I was warned of these effects well before surgery.

As I've said "ad nauseum" I think that each of us reacts differently to both surgery and the follow-up treatment.

Hope things go well for you.

Hi Pikeman, What a huge learning curve is made available by this website. The vastly different experiences of others to radiation therapy at least prepares one for possible adverse effects in their own case. So one is not alone, etc....

I still have not yet taken 'on board' that I likely have a brutal recovery journey ahead of me. With each visit to this site I pick up snippets of information, latest: You Pikeman still without taste buds and unable to take solids after 3 years since treatment. Of course, that does not mean I will experience the same....but!

I mentioned elsewhere on this site that I am experiencing stomach pains (and fear), and approached my GP who after the customary checks (blood test) which showed no apparent abnormalities, arranged for an 'ultra sound scan'(?). The appointment would take approximately a month. I have shortened this by going private and have an appointment for Tuesday, 7th December, 2004. I await the result of this procedure with some trepidation...I am sure many of you know the feeling!

Regards to all, Fridge

PS. What can ultrasound scan show? Metastatis spread? Fridge

Hi Fridge, try not to worry too much. That can be worse than the "real" symptoms.

Regarding my loss of taste buds, I've forgotten now whether that was due to surgery or radiotherapy. I rather think however that it may have been a comination of the two.

Inability to take solids, definitely a result of having all my tongue removed. It seems as though people with partial tongue removal can, eventually, take some forms of solid food.

CT Scan, might just be to investigate your stomach pains. Whatever it shows up though surely it'll be case of better the devil you know etc.

Look forward to reading how it goes for you

Hello Fridge. Yes I copletely go alomg with what Pikeman has said. Not one of us is the same. I only lost my taste buds (after 32 RT sessions) for about a month and suddenly I had a taste of smoked salmon and it wasn't paraffin any more! Now I can't eat it becauseit's too solid but I think it's because my gullet is affected further down. I try not to think about it. Have to have exploratory surgery in a few weeks.
So don't worry about the bad things unless you suddenly have them and then you know you are not the only one. But keep writing how it is going as that keeps us going too.

Dear Vicki and Paul I am so sad that you are havingn such a terrible time at the moment. It always seems to be worse when other people are getting that expectant, happy look in heir eyes doesn't it. . Paul are you mixing with fellow sufferers at all? We have a good group at the local hospital when I can be bothered to get there. This not eating has devoided me of energy.
Hence I am off to bed now with my love to you all. And Pikeman. Great to hear from you. You are a wise and lovely man. Ishbel