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Hello, we found out my dad had throat cancer after Christmas and since then we have been in and out of hospital. He first had to go through an emergency tracheotomy & fed by a nose tube due to losing so much weight. The tumour had wrapped around his voice box and so a total laryngectomy was needed. He had the operation recovered really well and has completed 6 weeks of radiotherapy.
The last 2 weeks treatment I think have been the worst for him, when we can get him to eat, he is eating only soft foods like yogurt and semolina & drinking very little. He is having trouble swallowing, sometimes it comes out of his nose. He is adamant that he will not have the nose tube again so is trying but is losing weight. I'm worried about him.
His neck is very sore and weeping, he uses E45 cream to try and help, the bibs irritate his neck, we have tried to tie a cotton hanky around his neck to make it more comfortable..
Can anyone advise of anyways to help with swallowing and how long his neck will be so sore.
The doctor has spoke about a speech valve, how long is it likely to be before they will consider fitting the valve? He gets very frustrated trying to communicate. he has a hand held mic he uses on his neck to help him communicate but due to the weight lose and numbness its hard to always understand him and I can see him getting frustrated and angry with us all :(
Any advice would be greatly appreciated. Thanks
Hi Sharon0512 I'm sorry to read your dad is having such a terrible time at the moment The only advice I can offer is about his neck, after I had finished my treatment my neck was raw and very sore, so the team gave me a cream called Flamazine, it worked wonders, my wife had to clean and bathe my neck and then apply the cream each morning, the result was incredible it was very much better within 7 days. So it would be worth asking your dads team about Flamazine. The only other thing I can say is that things will and do get better with time.
All the very best.
Hello Sharon0512 , sorry to hear about your dad , I had a laryngectomy but I had a peg feeding tube fitted, was your dad offered this as I think they are more comfortable than the NG nose tube. I tell you what he is doing well in the fact that he can still swallow ,he must make sure he is getting enough vitamins etc as it all helps with the healing and the feeling better factor. I know these supplement drinks can be difficult to swallow as they are quite thick , maybe try some complan or similar . Can your dad not use a foam protector that covers the stoma ( hole in neck ) they are square bits of foam that stick onto the skin . or I used the base plates and filters . If you go online and look for Countrywide Supplies they will show you what is available for laryngectomees , they are available on prescription . I never got on with the bibs but you can get lightweight ones rather than the Buchannan bibs that are heavy . Don't order the Flexiderm base plates as they are extremely sticky, I use optiderm . All I used with my neck was aqueous cream but I did not have any weeping as such.
I fully understand about the electrolarynx under the chin , some people can use the very well but they take quite a bit of practice , the speech valve will be fitted once everything has healed up so I would say anything up to 3 months .Tell him it will all work out ok in the end ,I just used a pen and paper or a small white board in the early days of recovery . My laryngectomy was done in 2010 and im leading a good quality of life and have learned to adapt to my new way of communication . Wishing you and your dad all the best ,take care .
Chris . x
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Sharon, an alternative to a whiteboard and marker for communication is an iPad or similar tablet. You can download apps which allow you to write very quickly on the screen with a finger, and also erase instantly. We found this quicker and much less messy than a mini-whiteboard when my husband was unable to speak.
Hi Sharon0512, I appear to have misunderstood your post, I thought your Dads neck is sore due to radiotherapy burns, so the cream I mentioned would possibly be of no use to him. I do apologize for this.
Thank you Ray, yes his neck is sore from the radiotherapy. I have since got him some Medihoney cream to use but will remember your suggestion.
Thank you again.
Thank you, whilst he was in hospital we used the white-board and markers. I did download an app for him to use but he didn't use it much. Maybe I'll try and get him to have another go.
Thank you Chris, I don't think he was offered a peg feeding tube, how is that different?
We had asked about the base plates but they told us this would be looked into after the radiotherapy, I assumed because his skin is sore and wouldn't want anything sticky on the wounds. We do use the Countrywide supplier for other items so maybe we'll take another look at the catalogue and get some advise.. Thank you for your recommendations that's extremely helpful.
I believe we are waiting another appointment to see the surgeon in around month to 6 wks time when I assume he'll discuss the progress and plans for the speech valve. Do you have a speech valve? Do you have to learn to speak all over again or will we be able to understand dad as soon as its fitted?
Thank you for your time in replying to my post :)
Many thanks again
I'm sorry to hear your dad is going through such a hard time but I can tell you it does get better it just takes time
My husband was diagnosed with throat cancer in may last year and had the same op as your dad with 6 weeks radiotherapy, communication wasn't a big problem for us as we got by with me lip reading what my husband was trying to say and 90% of the time I understood what he said, he did have a electrolarynx to use but didn't use it that often, his neck was very very sore after radiotherapy but after using flamazine cream it cleared up quite quickly , he also ate soft foods along with fortisips for a few months but introduced more solid foods into his diet slowly until he got used to eating normally again
Now for positive news that will help your dad see there is light at the end of the tunnel, 12 months after his diagnosis my husband can eat basically everything he ate before even his favorite steak , bread is a bit dry for him so don't eat that very much but doesn't leave it out of his diet, just tell you dad to sip plenty of water when he does start to eat again because the saliva glands will be damaged and his mouth will be dry a lot
Hubby had a speech valve fitted in March this year and although it's not his normal voice suprisingly it does sound like my hubby with his Brummy accent it just sounds gargaly but to this day he's doing extremely well and we've even been to Spain in may which we both enjoyed
So although it's hard now things will get better and I found this forum really helpful .
Hello Sharon , I think the peg is more discreet and tidier and you are not tied to the pump , I syringe my supplement through my peg .Yes if the wounds are still healing in that area then its best to ovoid sticking bits one it . I did have a speech valve fitted when I had my laryngectomy , I don't know why they all don't fit them at this time ( maybe its me ) . but it did not work for me due to dame done in previous operations , the muscles and tendons were damaged , this was also the same reason I could not use the electro larynx.
I don't speak at all and use ,an app that speaks what I type ,or pen and paper , or if someone upsets me the hand gestures come in handy . I think JenBob will be the best to ask about how easy it is to learn and what it sounds like . As they have just gone through what you at the moment ., Only to pleased to help .
I replied on your other thread not noticing you also write on this one.
I also wish he is so lucky. In a previous post I wrote that half the people are like me and not so lucky. I tell my radiation doctor every time that I believe I have been over radiated. She says everyone gets the same to cure the cancer other wise it will come back and I reply people are not the same. Surely there must be some way of doing a bit of radiation at a time to make sure how much one can take. I also think that the mouth is quite a distance from the voicebox and doesnt need to be radiated so heavily. I am not a doctor and the body is complicated. But I do get the impression that they dont understand what we suffer from it and could improve to alleviate it. Regarding myself I have written that my throat was constricted to 10mm and had to have 4 endoscopys to get it to 16mm. I now have a dilator to use daily to keep it open. I have requested a stent and they have refused. So I have gone to another hospital see my previous posts about my peg. One should always try more than one hospital.
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