After 4 years of being told the lump on my Parotid gland was "harmless" and "nothing to worry about", a different Consultant insisted I have surgery to remove it. I was later told it was an "Adenoid Cystic Carcinoma." A rare malignant cancer. There is no Chemo that can treat it so I am just about to commence 6 weeks of radiotherapy at the Royal Marsden.
The doctors and various specialists have told me the awful side effects I can expect. I have been very naughty and have spent hours on the internet researching this cancer and it appears that it will very possibly kill me in the next 10 - 15 years with or without radiotherapy. I am now questioning if the radiotherapy will be any use to me. Can anyone give me advice?
Well I began the 30 days of radiotherapy on my neck today. I was told to get there 30 minutes early. I don't know why because I waited 30 minutes to be seen . Afterwards they wanted me to have a blood test. I walked what felt like miles to the blood test dept. only to find it packed with people waiting. As it was 3pm and I didn't want to get caught in the rush hour traffic I told the receptionist I couldn't wait for hours. She said it wasn't a problem and to try again tomorrow.
Anyhow, I now know what a microwave meal feels like when they placed the mask over me and switched the machine on.
29 to go
seriously you’ll be fine but more cooked inside as the days go on.
Have you got eye holes cut in the mask?
You can watch the machine go round you and see the pretty patterns as the bean changes.
Beam not bean
Hi Chris yep good choice if words the analogy of being in a microwave , what uitbsis ti me was melt my tonsil and melt my uvulva the g
dangly bit at back of throat so defiantly microwaved and at end my own body parts yuck ! Once treatment starts you get into a routine like beesuit says 29 to go . Are you having chemo as well ?
No eyeholes, Just a hole for my nose. They did play me some nice music as they cooked me though!!
No chemo. Apparently the cancer I have is so rare they haven't got round to inventing a chemo drug that is effective against it. Hopefully that will change in the future.
Thank you for your messages and I hope you are both well.
Hi everyone. I hope you are all doing ok.
Well I've just started my 3rd week of radiotherapy and some of the side effects kicked in with a vengeance yesterday. My mouth and tongue are raw and covered in ulcers. I can still swallow but it's very painful. The hospital have supplied me with Ensure drinks, codeine and a Lidocaine gel. I've got another 4 weeks to get through. It looks like it's going to be tough.
Oh Chris, any of us who has been through this, or supported a partner through it, will be empathising strongly with you right now. You will get through it though. As lots of people have said in other threads, don't be backward in coming forward to your medical team if you think you need more pain management or help with nutrition or anything else.
hang on in there.
Its important to keep your mouth clean so use all those mouthwashes your team gives you. I found Biotene helpful but the best was Caphasol which are effervescent tablets you dissolve in warm water.
Codeine never touched my pain so I got Oramorph which you can take every two hours if you need to.
It and codeine cause constipation which you don’t really want so get some laxative. There are various liquid ones your team can give you.
Thanks Alichapp and Beesuit.
I must admit I did wake up this morning thinking is it all worth it. My mouth was so painful and I've still got 4 weeks of this to go!
I took your advice and ordered some Caphosol. If it helps I will ask the doctors if they can prescribe it for me.
They mentioned the Oramorph if the pain gets too bad, but I want to avoid it if possible. I have to drive and so I'm worried about taking morphine. Insurance companies take a dim view of it.
I've been using Calendula cream on my neck and cheek and so far (touches wood) I've had no skin problems. But I know there's still plenty of time for that!
It's a full time job having cancer isn't it?? And very expensive!!
I made the mistake of reading about a young American athlete called Gabriele Grunewald. She had the same cancer as me on the same gland. I wish I hadn't read it.
Onwards and upwards!!
Hi chris oh dear hang in there we’ve all felt like that , pain relief I know what yiu arevsaying re driving isntbtheer anyine who can drive you at all or use hospital transport. Pain killers are sometimes needed if onlybto help with the eating are you taking anything at the momen tvstart with themcodwine then if need be oramorph ?
Re reading be careful as again I think we have all read things that we wish we hadn’t read.
Inwas prescribed gelclair for the mouth ulcers and radiation burn in my tongue it worked up to a point ,goood old salt water try that. Tip with Ensure drink dilute them makes them easier to swallow plus you get extra hydration I used to dilute by same amount again .
hazel good luck if u can do it anyine can
hope your feeling as ok as possible, went through the same as you last year. I mouth washed with sodium bicarbonate, salt and boiled water every hour while awake and I had 2 lots of Maniuka honey max strength every day, it definitely helped. Keep doing head, neck and mouth exercises to keep the stiffness away. Good luck. It gets worse before it gets better but there is light at the end of the tunnel !
Unfortunately there is no-one else who can drive me to the hospital so I have to be careful with the painkillers. Also I want to avoid patient transport if I can. A few years ago I injured my leg and had to use patient transport and sometimes it can take hours to get home, especially if they drop off lots of other patients first.
I've taken your advice and I am diluting the Ensure with milk. It is much better.
Hope you are well,
I just wanted to let you all know about a mouth rinse I have discovered that greatly reduces the sore mouth and ulcers caused by radiotherapy. It is called "Caphosol". You rinse your mouth 4 to 10 times a day with it. My mouth got so bad during the second week of treatment that I could not eat. After using Caphosol for a couple of days the soreness and ulcers disappeared. My doctor kindly provided me with a repeat prescription after I had paid privately (£50) for the first supply. Please note that it does not help with "dry mouth" or help with loss of taste. But it least it helps with the pain and difficulty in eating.
Hi Chrisuk1, thanks for this update as so many of us need as much help as possible with the side effects of radiotherapy, as they say "every little bit helps". Hope all is going ok with you, all the best, take care.
So glad it helped you. It certainly sorted me out.
great to hear you have got some pain relief! Good luck with the rest of the radiotherapy, over half way through now.
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