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I'm back - but not better!
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posted
Hi everyone
I haven't been on here for a while as I've spent the last four months in hospital.

I was just starting to slowly recover from the side effects of radiotherapy in june,when my transplanted kidney(which has worked brilliantly for five years)started to fail. This was due to the drugs I was taking to stop rejection, having to be reduced substantially when I was diagnosed with throat cancer.

When the kidney couldn't be saved,it was removed and unfortunately I had complications and ended up having a stroke and spent three weeks in intensive care,then four months in the renal ward.

My radiotherapy problems have all come back with a vengeance - lots of thick mucus,swelling in throat and on Larynx,very dry mouth and in hospital I had to have a PEG which I'm now continuing at home as I can't swallow anything except liquids.

As I now have to spend ten hours a night using the PEG and three afternoons a week going to have dialysis,together with loads of physio to restore my wasted musces,I feel so fed up.The physio's have said it could be a year before my muscle strenth returns and I can walk normally again.
I feel that if I could just get rid of the rads side efffects and the PEG I can handle everything else. Sorry to moan but I just wanted to let you all know that I haven't been away from this wonderful site through choice and hope to contribute with postings much more.

Cheers
Sandy
 
Posts: 44 | Location: Devon | Registered: 28 November 2009Reply With QuoteReport This Post
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Hello Sandy
I'm lost for words.
Sorry to moan????? After what you have been through you're entitled to scream to high heaven in my books. What a dreadful ordeal you've been through and yet here you are posting and catching up with everyone. Speaks volumes of your strength and also the value of support offered by these great forums. I'm so glad you had the MCF to come back to.
I know the PEGs are frustrating Sandy but try to think of it as something that frees you up to put your efforts into healing and returning to good health. While the PEG is nourishing you, it's something that you don't have to be worrying about. A poor attempt at lightening your load but it was so reassuring that Trevor's nourishment was quietly being taken care of and allowed him to rest or whatever else he needed to do.
I can't imagine the drain associated with dialysis. My heart goes out to you and all my positive vibes are heading your way. Little comfort I guess but I'll send them anyway!
In Trevor's words Sandy, STAY STRONG. You've had the strength and drive to get through so much already, try to rally and take this awful situation head on.
Love from way down here
Deborah
 
Posts: 744 | Location: Willaston, South Australia, Australia | Registered: 09 July 2007Reply With QuoteReport This Post
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So sorry to hear of all of your suffering Sandy. You have been through hell and I do hope that you start to feel better again soon. take care,

Cathy
 
Posts: 323 | Location: Brighton | Registered: 26 October 2008Reply With QuoteReport This Post
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Oh My Goodness Gracious Gosh!! Sending you good thoughts and energy from the states!!!
 
Posts: 345 | Location: USA | Registered: 16 July 2008Reply With QuoteReport This Post
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I am so sorry to hear of your troubles. I know what you mean about the PEG. I felt that if I got rid of it I would be able to move on.However,after having it removed ( by pleading!)I realised how much it was keeping me going by getting the calories and nutrients in my body. I lost loads of weight- not that I had any to lose! I went down to 40 kilo and started to have problems with my heart and I kept passing out.
So, a word of warning to you all-Make sure you can eat adequately before you even think of having your Peg removed!
Please keep smiling!

Anne
 
Posts: 165 | Location: Sutton Coldfield | Registered: 22 May 2006Reply With QuoteReport This Post
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Hello all
Thank you so much for your kind words and support - you all really help to spur me on.

My main problem is the thick mucus at the back of my throat.I can't seem to cough it up(despite making all sorts of terrible noises like an out of control coffee machine!)but I can't swallow it either.It all just seems to sit there! This makes it difficult to try and eat anything as I am terrified of choking.
If anyone has got any ideas please let me know.
Cheers
Sandy
 
Posts: 44 | Location: Devon | Registered: 28 November 2009Reply With QuoteReport This Post
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Hi Sandy
After replying to your post to me I looked for your previous posts. I'm so sorry you are going through all this. I wonder why you are getting this delayed reaction to the radiotherapy when you did so well at the time? Must be your kidney problems? I have a friend who had just had a kidney transplant at Derriford, I know it's a rocky road. I hope that when I am struggling with treatment I will still have the grace to offer advice to others, as many on here do, it's very humbling.
Big hug
Vicky
 
Posts: 120 | Location: cornwall | Registered: 05 August 2010Reply With QuoteReport This Post
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Sanjan,
The thick mucus is not pleasant! Just try and keep drinking water and keep hydrated. Use the stuff the should have given you for dry mouth. I found the gel worked a bit. And use dry mouth toothpaste- your oncologist should be prescribing these for you. I used to go to bed at night with 1) a bowl 2) tissues 3) gel 4) painkillers to put in PEG and finally 5) a fortisip to put in PEG in morning so that I didn't have to get up!
I still get the mucus now and occasionally gag when my mouth is dry so I still always have a bottle of water with me.
Keep going-you have got thru the worst!-
Keep smiling#
Anne
 
Posts: 165 | Location: Sutton Coldfield | Registered: 22 May 2006Reply With QuoteReport This Post
Picture of Dr Vinod K Joshi
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Hello Sanjan

The thick sticky, stringy saliva is a big problem for many during radiotherapy. Have a look at the suction devices discussed in this past post. Your hospital might be able to assist you with this.

Best wishes
Vinod Coffee


Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice.

"If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally."
Lao-Tsu, Tao Teh King
 
Posts: 3905 | Location: St Luke's Hospital, Bradford and Pinderfields Hospital, Wakefield | Registered: 14 December 2002Reply With QuoteReport This Post
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Hi Sanjan, I agree with Deborah, with what you're going through you certainly have the right to scream to high heaven. Cant offer much advice on the peg thing as I never had one but hang in there and you can come here and 'moan' as much as you like. Hagg.


Hagg.

17 years and still kicking it. Never give up your fight.
 
Posts: 1277 | Location: Devon,UK | Registered: 27 March 2007Reply With QuoteReport This Post
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Hi Sanjan. Wow - I am so sorry for the bad time you are having! complications due to treatment are really 'unfair', when the cancer and its treatment is quite enough.

The mucus problem will pass. It is foul, it is scarey, but it WILL pass, honest! for me, the really bad stringy saliva and mucus blocking lasted - what - a couple of months? no, probably less than that, it just FELT longer. It is foul, you have my sympathy, but it does pass. Little little sips of water.

I have really just this last fornight found that I can actually clear my throat fully; so, that's nearly a year after end of radiotherapy, but it's not been a real problem for some time, just a bit unpleasant.

Keep the PEG until you are really confident about eating. I also wanted to get rid of it, psychologically it was like a chain tying me to being ill; especially as I had an old-fashioned one, with a long dangly tube that was unsightly and got caught in things!!! But I had to fight hard to keep my weight up after it was removed, even though the services here were very careful to follow my nutrition and didn't remove it until they felt confident. You don't want to go weakening yourself, keep it until you're sure you're really able to feed yourself properly.

I really hope you can get to a more normal life soon... get some freedom from all these treatments, eh. I wish you all the best.
 
Posts: 83 | Location: Montpellier France | Registered: 17 October 2009Reply With QuoteReport This Post
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Definitely keep the PEG until you are confident that you can eat a varied diet. I really wanted to be rid of mine after 8 months But it was too early for me- I went down to 42k and had heart problems because of lack of nutrition.

All's well now back to 60k and enjoying life.

Keep smiling!
 
Posts: 165 | Location: Sutton Coldfield | Registered: 22 May 2006Reply With QuoteReport This Post
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I had awful problems with Dry Mouth since completing treatment for base of tongue cancer in July 2010. Constant drinking, gels, sprays and synthetic saliva’ 24/7/ became unbearable. I found in the US a Colonel Richard Niemtzow who discovered, developed and still practices his Dry Mouth treatment in Maryland.USA. He also created battlefield acupuncture and is the world renowned authority on these treatments.

I exhausted places in the UK to be treated with his protocol. so visited him July 9th, 2011 and within the first of only two sessions was able to produce saliva again. No more gels, sprays and synthetic saliva since this date and unbroken sleep since.

I was profoundly affected at the results of the treatment so started in the UK The Dry Mouth Foundation. www.drymouthfoundation.org. but you could visit the colonel via his website www.n5ev.com

Let me know how you get on.

Terry Gannon.
Dry Mouth Foundation.
 
Posts: 73 | Location: London, Essex, Kent, Herts, Surrey, Suffolk | Registered: 14 August 2011Reply With QuoteReport This Post
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