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Living On-Line

Looking for information?

You may have chosen to visit this website because either you or someone that you know is concerned about head and neck cancer.

Early detection is important and increases the success of any treatments so please do not put off seeking advice from either your GP or dentist if you are concerned about changes in your neck and mouth.

If you are looking for information about the signs or symptoms have a look in our resources section.

The following link has information on how to check for signs of head and neck cancer yourself:

https://www.mouthcancerfoundation.org/self-examination/

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Fundraising Living People

Fundraising this Autumn

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Living People

Your Stories Matter

Can you help us by sharing your stories about your recovery? 

We have found that “our stories” are some of the most searched areas of the website. We would like to add more stories to the ones we have already. Are you happy to share yours? Ideally they would not have too much detail that would enable others to easily identify you.

Our website editor is happy to help in anyway. Contact us by email –  info@headandneckcancer.life

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Living People

Can You Hear My Voice?

“Can You Hear My Voice?” is a triumphant documentary about a choir unlike any other in the world – a choir whose singers have no voice boxes. The film is produced and directed by award-winning Los Angeles documentary filmmaker Bill Brummel – his first film since having his own voice box removed in 2016.

At its heart, “Can You Hear My Voice?” is a film about the arduous transition from life with a voice box, to one without. It’s told through the personal stories of members a one-of-a-kind choir in London, made up of individuals who because of various throat cancers, have had their voice boxes surgically removed in a life-altering surgery called a laryngectomy.

The film follows the choir as they prepare for the most ambitious concert they’ve ever performed, a sold-out performance at London’s historic Tabernacle theatre, and features songs made popular by Nina Simone, Tears for Fears and Louis Armstrong. Interspersed with the concert preparations, are the personal stories of three members of the Shout at Cancer choir. Their specific accounts are examples of the broad experiences of laryngectomy patients, and how they traversed the traumatic psychosocial obstacles of living without a voice box, to emerge as fully engaged, communicative and accomplished human beings.

“Can You Hear My Voice?” is an entertaining and triumphant testimony about a universal theme – the human capacity for resilience, even in the face of overwhelming adversity. 

We understand that the film will be distributed in the near future. 

If you would like to watch the official trailer click on the link below: 

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Living

Learning about Side Effects

We’ve received a few comments and questions regarding treatments and their side effects. As a small Charity our role is not to give medical advice. We would always encourage people to discuss their concerns with the team involved in developing their treatment plan. 

If you feel you want to learn more about treatment options or possible side effects we would again encourage people to talk to the medical team. If after that you want to do more research by searching online only use reputable sites. 

Macmillan.org.uk have a lot of very relevant information on their website about treatments and commonly used drugs: 

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs.

One of our members has been researching into Cisplatin one of the drugs that was used in her initial treatment. You can see the possible side effects here: 

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/cisplatin

They have found that there has been further research into why the drug has affected hearing which has helped them understand the impact on their hearing. 

You can read more here: 

Cancer Drug May Cause Lasting Hearing Loss 

A study carried out by the National Cancer Institute (NCI) in the United States could explain why many patients treated with the chemotherapy drug cisplastin develop long-term hearing loss. 

Researchers found that in both mice and humans cisplastin can be found in the cochlea (the part of the ear that enables hearing) months -or even years – after treatment. 

The study, lead by researchers from the US National Institute of Deafness and other Communication Disorders (NIDCD), was published on November 21, 2017 in the journal: Nature Communications. 

According to the researchers, cisplatin, a platinum-based chemo drug, is commonly used for the treatment of many cancers. But they maintain that this drug, along with other platinum-based drugs, can damage the cochlea, leaving between 40%-80% of adults – and around 50% of children – with significant, permanent hearing loss. 

Dr Percy Ivy, associate chief of the NCI’s Investigative Drug Branch, was not involved in the study. But he commented: “This study starts to explain why patients who receive cisplatin sustain hearing loss.” 

He added: This is very important, because as we come to understand how cisplatin-related hearing loss occurs, over time we may figure out a way to block it, or at least diminish its effects.” 

One of the study’s investigators, Andrew Breglio of the NIDCD, said: “The new study differs from previous research because it takes a comprehensive look at the pharmacokinectics – or concentration – of the drug in the inner ear.” 

Dr Ivy stated that hearing loss from cisplatin  “is not a static injury – it doesn’t stay the same. It can progress over time and it can occur late. That suggests that a long-term cancer survivor needs on-going monitoring of their hearing.” 

Dr Lisa Cunningham, from the NIDCD, who lead the research team, stated: “Cisplatin is one of the most widely used anticancer drugs on the planet – and it’s saving a lot of lives.” 

She added: “But the hearing loss is permanent. So these patients are surviving and they will have hearing loss for the rest of their lives.” 

She stressed: “What we would like to be able to do is to develop a therapy that will allow patients to take the life-saving drug – but preserve their hearing.” 

*More information about this study from the US National Institute on Deafness and other Communications Disorders. 

 

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Living

Spit It Out!

After chemo and radiotherapy for neck cancer 7 years ago, I have managed to adapt fairly well to quite severe swallowing problems.

However, one of the most difficult side-effects I have had to tackle is a dry mouth, with a constant amount of thick, stringy saliva, which can build up to an extent where I feel physically sick. It’s not only distressing, it’s also embarrassing.

To cope with this, I took the advice of Macmillan Cancer Support and made up a concoction of sodium bicarbonate mouthwash. Add one teaspoon of sodium bicarbonate to 550ml (one pint) of cooled, boiled waterand swish it round your mouth, before spitting it out.

It’s not perfect – but, my goodness, it works for me. Thing is, you have to keep a bottle with you when eating out, but I’ve found that by taking a few slurps before a meal, it stops the sticky stuff from forming too much. (You can swallow it, if you are in company!)

If you don’t fancy the taste of sodium bicarb, you can settle for plain water. Just keep taking sips all the time. If you are able to taste food, taking frequent sips of water or sodium bicarb doesn’t affect the taste of the food – at least not in my case.

Doing this also lessens the strain of chewing and swallowing, which can get very tiring. But don’t do it with fizzy drinks, like cola. Doesn’t work! Be interested to hear your comments or other useful tips.

Mary Bishop-Pinn

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Living

New Treatment

New radiation technique that reduces the side-effect of swallowing difficulties

A new treatment to improve the lives of patients undergoing radiotherapy for throat cancer has been successfully trialled by the Royal Marsden NHS Foundation Trust and The Institute of Cancer Research. 

According to reports, the treatment should be ready to roll out across NHS cancer centres next year (2021). 

Prof Chris Nutting, an oncologist at the Royal Marsden (quoted in the Daily Mail  by Adrian Monti: Oct 13, 2020) -explained: “Most cancer patients with head and neck cancers have intensity-modulated radiation therapy (IMRT), which has been the gold standard treatment since 2011. 

“The radiation needs to pass through the skin and other tissue to reach the tumour and can cause collateral damage around the treatment site, to important structures in the throat area.” 

But with the new treatment – called optimised IMRT – Prof Nutting said each radiotherapy course is designed for the patient like a ‘bespoke suit’. 

Prof Nutting said: “This is a game changer. In our clinical study of 112 patients from 23 cancer centres, 25% fewer patients suffered with swallowing issues when they got optimised IMRT, compared with those who received radiotherapy via the standard technique.” 

He added: “It means many patients will be able to return to eating normally again after treatment.” 

Results of the study, presented at the American Society of Clinical Oncology virtual conference in May 2020, found that 40% of patients who had received optimised IMRT reported significant improvements in swallowing one year after treatment, compared with only 15% of those who had the standard treatment. 

Dr David Thomson, a consultant clinical oncologist at The Christie Cancer Centre in Manchester, said he believes the study’s findings will change how patients are treated in the future. 

“Radiotherapy is used to treat head and neck cancers, which usually respond well and there is a good chance of cure,” Dr Thomson said. 

“This practice-changing style should result in the rapid adoption of this technique throughout the UK and an international standard of care for this cancer treatment.”  

Watch a video with Professor Nutting and a speech and language therapist discussing this topic: https://wwww.royalmarsden.nhs.uk/new-optimised-intensity-modulated-radiation-therapy-can-reduce-swallowing-difficulties-head-and-neck

Categories
Living On-Line

Are you tech-savvy?

Are you – ”well informed about or proficient in the use of modern technology, especially computers” – if you are, you are “tech-savvy”! Many of us have become a bit tech-savvy by using Face Time, What’s App, Skype or Zoom to keep in touch with friends and family. But some have been left behind because it all seems a bit bewildering. 

The NHS has replaced some of their face to face medical appointments with telephone or on line consultations, so now is a good time to start putting that right.  If you feel hesitant, here are a few tips: 

  • Get used to using your equipment. It really helps to orientate yourself to whatever device you are going to use. 
  •  Find someone in your support bubble to help you access the appointment link.
  • Consider setting up “remote access”. This is where someone you trust can access your computer and as if by magic you will see them clicking on the links and setting you up for your session.    
  • Practice using your mouse and keyboard if you haven’t used them for a while. Have your glasses ready too as the clinician can type questions or share a screen so that you can look at documents.
  • Don’t feel embarrassed to tell them that you have difficulty hearing at the beginning of your appointment so that the clinician can use the chat button to type out things you haven’t heard clearly. 
  • Think about where you are going to be for your online appointment. I have found that when people are sitting in their cars or even in Tesco’s it has been almost impossible to have a successful consultation.
Think about how well your clinician can see you
  • It is really helpful to get the best picture possible so that the clinician can see your face clearly. This may sound silly but visibility on the screen can be improved if you make sure the lighting is good. Avoid sitting with your back to a light source such as a window. It is a shame to shut the sun out but in some cases closing the curtains will make a big difference. If possible try and have the light coming from behind your computer screen.
  • Make sure that the room is quiet and other people in the house know you’re having an online appointment – we’ve all heard of those embarrassing stories where people unknowingly wander across the back of the screen…for me my favourite was Charles Saatchi.  
  • Experiment with the position of the camera. If you are using a laptop that will mean experimenting with the angle of the lid if that is where you camera is. If you are using a phone or tablet it is often best not to hold it so experiment where you will prop it up and what gives you the best angle so that the clinician can see you clearly. You don’t need to buy a stand as books, tissue boxes, shelves, recipe and music stands can all work well. If you are using a phone practice switching the camera so that the clinician can see you and not your living room!  
What your helper may need to help you with.
  • Set up your other equipment beforehand. Check your wireless or 4G signal, if it is poor, plug your device directly into your router if you can.
  • Know which NHS system will be used for your consultation – it could be “Zoom”, “Microsoft Teams” or “Attend Anywhere”. 
  • When you are sent the link for your appointment save it somewhere safe. It generally will be sent as a” hyperlink”. Clicking on a hyperlink mostly works every time but practicing copying and pasting links in the correct place is a good idea, just in case.
  • Your link to an Attend Anywhere appointment will be the same for every session but will vary from department to department so try to avoid mixing them up. 
  • If when you get an appointment for a virtual clinic you feel overwhelmed with the technology please email or ring the contact number provided.
  • Some services offer you a chance to practice so that you can feel more confident when you have your appointment.  I have been using Attend Anywhere at work for many months and was involved in the NHS pilot project that had started before the COVID 19 pandemic and most patients manage very well.
Confidentiality Security and Safety

As with all appointments please remember to ask the clinician’s permission if you want to record any part of the session. 

Make sure that you really do trust the person and set up the system so it is password protected so they are unable to access your computer without your permission. I’ve had quite a few examples where people have had support from family members (grandchildren are a favourite), friends and church members.

And finally if you feel unable to talk freely in your online session because you feel you are being overheard, subject to coercive control or are frightened of domestic violence please telephone the police if you feel you are in immediate danger.

If you are not in a life threatening situation try to let your clinician know or contact: National Domestic Abuse Hotline Freephone: 0808 2000 247 (24 hours) 

Good Luck 

Lucy 

Categories
Fundraising Living

Thank you Donors

A big thank you to our donors

If you would like to donate please use our Just Giving link: https://www.justgiving.com/headandneckcancer

We are a small Charity and wouldn’t be able to do the things that we do without the support of our members and donors. 

Donations allow us to run a monthly drop in group at St. Catherine’s village Hall.

They also fund social events such as our Annual Summer and Christmas Parties.

One donor paid for the food for the Christmas party because having a dry mouth herself “I know how hard it is sometimes to chew and swallow foods that are provided at most events. I wanted people to have lots of choice so they could find something that they fancy eating”.

Another paid for some LCD writing tablets as she could not imagine how hard it was for people recovering from head and neck surgery to communicate in the early days of their recovery. ”it seemed like such a small thing but I wanted to do something after my friend had throat surgery and I realised she needed to write everything down and never had paper and pen.”

Thanks to some very generous gifts we were planning a wider range of activities for 2020. Unfortunately these have been put on hold due to the pandemic. We will start again when it is safe to do so. We’re looking forward to it.