November is Mouth Cancer Action Month, an awareness month organised by the Oral Health Foundation. In today’s blog around mouth cancer, we’re talking about speech and voice changes. Speech changes can depend on where your cancer is, and the type of treatment you have. Speech and voice changes don’t only affect people with mouth cancer. You may also experience changes if you have laryngeal cancer or oesophageal cancer, amongst other diagnoses. For some people, speech changes are temporary, and their speech or voice returns to normal after their treatment. For others, some treatments can cause permanent changes to the way they speak. If you’ve been affected by speech or voice changes in any way, the Online Community is here for you.
Talking about what you are going through can be an important part of finding support. It can also be important to ask your medical team questions and tell them how you’re feeling. If you experience changes in how you can communicate, this can sometimes be difficult to manage both emotionally and physically. If you are finding changes to your speech and voice hard to cope with, you’re not alone.
“I can't talk properly…no one can understand me and the harder I try the worse it becomes as well as hurting… it's so hard as everything has fallen on me all at once.”
Community member, ‘Head and neck cancer’ group
Chris, known as chris2012, is a member of the 'Head and neck cancer' group and a Community Champion. He has kindly shared his experience of treatment and recovery:
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Having cancer of the Larynx is a life-changing decision and involves a new approach to speaking. The actual operation is ok to recover from with not much pain, it's mainly the inconvenience of having a trachy ( a tube in the neck) fitted to keep the stoma (opening in the neck) open as this is the new way of breathing as the mouth and nose become redundant. Once this has settled down and a swallow test has been passed, life becomes a lot more comfortable. You can then start to eat and drink without using a PEG feeding tube in the stomach.
During the operation they often fit a speech valve (TEP) but some are fitted afterwards. This is a clever device that has successfully given many people a new clear voice. There is also the option of a an Electro-larynx that is used similar to an electric shaver where you hold in in the neck/chin area where it vibrates ,so as you mime the words you want to speak the vibrations will produce a voice/sound, albeit a bit robotic, with experience they can produce a fantastic way of speaking. The last option is Oesophageal speech where you swallow air and by controlling it when you exhale you can make a voice by again mimicking the words you want to say. This was the most popular method before the voice valve (TEP) or the Electrolarynx.
A lot of people think by having the voicebox removed it the end of communication but with a lot of practise and help from a speech and language therapist you can regain some form of voice, so its not all doom and gloom. It takes a good year to adapt to the new way of life but with patience a lot can be achieved. You will of course breath via the neck and wear a stoma base plate that sticks to the skin where a filter HME (heat and moisture exchanger) is inserted. This replicates what the nose used to do by filtering and conditioning the air. It's an operation I never thought I would have but thankfully I'm cancer free and live a very good quality of life.
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Chris has highlighted that there are lots of different ways to communicate if you can’t speak. You may need to take some time to find a way to communicate which is right for you. Some members have found it helpful to text their loved ones instead:
“My mum has been in hospital for a week now and had major surgery last Wednesday to remove 4 tumours from her cheek, jaw area and neck and throat. She is able to text message me as obviously she can't speak right now.”
Community member, ‘Head and neck cancer’ group
Macmillan’s website page about speech and voice following cancer treatment also has further tips for communicating. This website page mentions that technology can be really helpful if you are experiencing differences with your speech. Alongside the Online Community where you can find support by typing messages, there are also apps which can help you to talk to others. There are apps which can convert your text into speech. Our website page gives some examples. You may also be able to find out more about technology which can help from your doctor or nurse.
Another option which may be helpful for you is speech and language therapy. Many members on the Online Community have shared their experience of this type of therapy. If you are not sure whether you can access this type of therapy, talk to your GP or medical team.
“My speech would get slurred, I was told it sounded like I'd had one drink too many, chance would be a fine thing whilst stuck in a hospital bed! In my case they said it was a weakness of the tongue muscles caused by the trauma of the operation. They sent me a Speech & Language Therapist who gave me some exercises which helped, so if you haven't already seen one of these I would recommend you ask if you can see one as they may be able to help.”
Community member, ‘Head and neck cancer’ group
Adjusting to changes to your speech and voice can take time to manage. Cancer Research UK also have guidance on finding further support, and information around what you may experience.
The ‘Head and neck cancer’ group on the Online Community is a safe place to find support without needing to speak out loud. Members talk about all aspects of their experiences around changes to their speech and voice. Lots of members say things like that it can be really helpful to talk to others who can understand how you feel. Why not reach out and share your experience of diagnosis and treatment?
"Two of the speech options Chris talked about (valve and elecrtrolarynx) weren't suitable for me as my tissue was too badly damaged by radiotherapy; the valve because they were worried about making an incision to fit it, surgeon said it would be like trying to operate on cardboard and the electrolarynx (which I tried) was pretty hopeless as the RT damage meant there was very little vibration for it to pick up. I did try oesophageal speech but I found it very hard to do, and so I made the decision to remain voiceless and I'm comfortable with that now having lived with it for fourteen months. It is still possible to make various vowel sounds by clicking my tongue etc and that allied to emphatic mouth movements to enable people to lip read gets me by (though I always carry a pen and paper as well), people close to me "hear" what I'm saying 90/95% of the time.
For the first six months or so I always covered over the HME in my stoma with a scarf when I was out but not any more, get the odd strange look but I can live with that.”
Community member, ‘Head and neck cancer’ group
Remember you can also reach out for support if you are supporting a loved one affected by cancer.
“My son was diagnosed in April with Mouth and Jaw Cancer. He had surgery Tuesday 29 June and bone and skin were removed from his leg to rebuilt his jaw…Yesterday the nurses got him out of bed and sat him in a chair for a few minutes and today he has managed to send a text to the What's App group to say they have changed his tracheotomy this morning, and are hoping he will be able to speak a little in the next day or so, they are also getting him out of bed again and want him to sit in a chair for 3 hours. It's absolutely wonderful what the surgeons and nurses can do…there is light at the end of the tunnel. For those of you facing similar surgery, be strong and brave, Hang in there”
Community member, ‘Head and neck cancer’ group
We know that people can find different types of support helpful. Have you thought about accessing our Support Line? Our advisers are here to listen and talk about what you’re going through. You can still talk to our trained advisers if you’re unable to speak.
If you’ve been affected by speech and voice changes following a mouth cancer diagnosis or cancer treatment, take some time to find the right support for you. If you’d like to read more, why not take a look at our guest blog from Chris? Chris talks about his experiences with mouth cancer, and what he’s found helpful.
Here in the Community team, we see every day how much it can help to share experiences. Why not write a comment below to share what’s helped you manage speech and voice changes?
