Radiotherapy Treatment and ability to Eat Following Extensive Throat and Neck Radiotherapy
Posted on: Sat, 01/03/2008 - 17:37
Offline
Radiotherapy Treatment and ability to Eat Following Extensive Throat and Neck Radiotherapy
You can see my main story in Other / Multiple Cancer and Lung Cancer forums suffice it to say that after over 400 hours in patient (six days at a time) multiple Chemo treatments my consultant decided, after I had a gastroscomy and pegg (feeding tube) inserted, to also book me in for four weeks radiotherapy.
First job was of course to have the upper torso / full face mask mold made which he insisted the mold room did the very same day - no I was not a private patient just plain NHS - but my consultant believed that I was a real fighter and wasn't wasting any time. Mould was made on the Friday afternoon and I was told I would need a chest tatto - I had visions of skull and cross bones, A love heart or the like but what did they give me the smallest little dot at the top of the breast bone you have ever seen - thats what they mean by "You May Need A Tattoo".
Monday morning I commence Radiotherapy, the first half hour of which was spent with the radiologists marking up and checking the three / four sites where the laser was to zap me and then finally the zapping commenced and few minutes later I was on my way home ready to return the following morning and every morning thereafter for the next four weeks, with weekends off for good behaviour.
I soon learnt that very few people spoke to each other or to the radiologists everyone appeared to wait their treatment sitting down living in their own private little world waiting to "suffer the lazer" - so I soon put a stop to that people started talking and explaining their side effects and others were giving advice etc and within a few days it was just like a Sunday School trip with new people actually being welcomed to our "lazer club" whether that has been perpetuated I don't know but I hope it has - as without a shadow of doubt the more discussion that takes place and the more open we can be about Cancer and it's treatment the more benefit we can all derive from each other.
Despite having my feeding tube inserted into the stomach I was, as usual, determined to fight hard to continue to eat normally throughout my treatment, and I can honestly say even at my very worst (day 15 onwards) when I could barely open my mouth I still tried to swallow something - not enough for a fly to survive on but something.
However during the lead up to day 15 and more to the point for several months after completetion of my Radiotherapy treatment (during which time I actually had to have another 200+ hours of Chemo - another story) ALL FOOD TASTED ABSOLUTELY GHASTLY and caused NAUSEA.
I could of course just continued to survive on 8 bottles of Fortisip a day through the stomach tube - but I was actually cooking meals for my wife every day and actually fancied eating something and having to fill syringe and inject through the stomach tube was not terribly conducive to having friends for dinner.
EVENTUALLY THE TIP TO EVERYONE
As I have said earlier I talked to people including the Radioloigists, who seemed quite surprised that when they said "how are you today" my reply was OK but I just wish everything I try to eat didn't taste so utterly gashtly. Further discussion and I was asked what do use to eat with? well a knife and fork I replied, Metal? Yes....ah there's your problem go and buy a set of plastic cutlery and also don't eat or dink anything from stoneware crockery.
Within a couple of days I was able to eat a very small amount of "food" and in doing so maintained the ability to swallow.
It seems that the residue of Chemo and or Radiotherapy remains within the mouth and reacts with principally metal cutlery and to a much lesser degree stoneware crockery now in the words of Michael Cain "Not many people know that".
It has certainly also worked for a number of other people as well as me so if you are having problems with taste try it out!
Matt Embleton
__________________
Matt J Embleton
Matt, thanks for your description of your radiotherapy. It helped a lot. My husband began it two weeks ago, and up to press he hasn't had any negative effects that we notice - he had a sore mouth and lips from the chemotherapy, but was able to keep eating. He hasn't used his peg-tube yet, and he's hoping he won't have to. But at least it's reassuring that he will be able to feed if his esophagus becomes too sore. He's got another 3 weeks to go, so I hope things keep on so well.
Your information is really uplifting and I can't thank you enough. All the best to you.
Really is my pleasure - I do hope that everything is still going ok, tell hubby not too heitate to supplement his normal food intake with a couple of Fortisips a day even if he is eating ok - the extra required vitamins etc in the fortisip help maintain your immune system / ability to fight infections - just drink them!
Also if problems do occur especially with ulcers etc make full use of the Nystatin it really does help and don't worry if you can't use the Difflam (Green / Red) neat as instructed just water it down a bit until it is comfortable in the mouth - again the pain is a hiccup and remeber the old saying "no gain without pain"
All the very best,
Matt Embleton
Matt J Embleton
hello matt. ihave just gone through 34 sessions of radiotherapy for cancer of the larynx the treatment at the time wasnt to bad but like you i was fitted for the head restraint which i had to wear on every session that i did find getting used to was difficult ive also had the peg feeding tube fitted but have not had to uss it i can still swallow liquid so i am living on the ensure food that was supplied to me i have lost my sense of taste so i cant tell you if it tastes good the main problem i have now is the skin all around my neck is burnt and i have never had an itch like it. i never realised how meny people are affected by this ive lost a lot of my friends as soon as they hear the magic word cancer i think thay put it on a level par with bubonic plague i tell them they cant catch it from me and get the impression they dont believe me im just really glad my daughters dont think like that they have been my rock throught this and there support has been amazing. it seems we are all paddling the same canoe ihope your treatment and recovery goes well and we can all get back to a normal life.. ken..
Kenner,
Thanks for your good wishes - you can see my latest elsewhere "matt's scan results" or something like that.
The problem with people and the word "CANCER" is their own fear of what to say what to do etc - some of course have been directly affected by losing loved one's and the minority of these people just can't handle it.
You may have also seen my "Ten Tips" in which I set out the way I got my terminal Cancer, a few months to live information out to people - it does seem ironical but once the news was totally in the open - everyone I knew was able to talk to me - I even (quite cruely on reflection) replied to someone in my motorbike club who heard my voice ans started berating me for not speaking clearly "well my excuse is that I've got terminal cancer and a few months to live - so that's that out of the way so now just treat me like the idiot I am" - he was a bit shocked so I let him buy me a cup of tea, and now as I am still here he reckons the consultants must be having me on.
If your friends don't want to know you, make some more friends I am sure you realise there will be lots of them here.
All the very best
Matt
Matt J Embleton
I'm afraid that if people - so-called "friends" - can't cope, it's their problem, not yours. You are not alone in this, as I was once next to a chap having chemo who told me the same experience. The trouble is that having cancer is a time when you need all the friends you can get - just everyone doing a little builds up to a significant force and pulls us over the worst parts. As Matt says, some people automatically RUN when they hear the word cancer - probably a bit of worrying that they might be called upon to do something difficult - and a lot of it running from their own fears about their own future! I'm so glad that you have your lovely daughters to stand by your side. Your neck sounds so painful! I have just read elsewhere that someone was told to buy their own aqueous cream! What were you given to try to soothe it? You've clocked up a lot of sessions there, and let's hope that from now on, you're on the road to recovery. With very very best wishes xxx Penny
Penny
im a firm believer in trying to heal naturally when possible and not using drug treatment if it can be avoided