Unfortunately our Group activities were forced into hibernation by Covid during 2020 and 2021.
2022 has seen a re awakening  of our Groupâs activities which we have attempted to make more varied and exciting. They are detailed elsewhere on the Website.
This year we have welcomed some new and active members to the Group and we look forward to seeing more new faces in the the coming weeks and months.
We plan to recommence our Thursday morning Head and Neck MDT Clinic coffee mornings however because it is on hospital grounds before we can start we need to catch up with the Hospitalâs statutory and mandatory training.
Our monthly âdrop inâ afternoons are starting again on the third THURSDAY of each month and commence this month on the 17th. November. They are for New and Old Group members.
We are now holding these meetings at Shalford Village Hall which has many advantages including being in walking distance of the Shalford Train station and there is a map showing the way there elsewhere on the website.
The upcoming dates of these meetings, all of which will have a theme to the meeting, are: 17th. November  and 15th. December 2022 then 19th. January 2023., etc.
All the meetings start at 2.30pm. We look forward to seeing many of you at these meetings.
N.B.   Donât forget the usual Christmas Party on 10th. December at the usual venue of the Royal Surrey County Hospital Social Club in Gill Avenue Guildford at 2.00pm. RSVP please before 3/12/22.
Best wishes to everyone
Patrick.
Sent from my iPad
We are always are happy to welcome people who are considering volunteering. Even if you only have 1 or 2 hours to spare every month or a few hours once or twice a year we have plenty of things to do.
âŚ.it could be fundraising, running activities at a group meeting, helping with our IT, adding to our links section, writing something for our stories sectionâŚ
if youâre interested please email us : info@headandneckcancer.life or, if you would like to see what we do and meet some volunteers please come along to Shalford Village Hall, Shalford. GU4 8BQ on Thursday 17/11/22 or Thursday 15/12/22 between 14.30 and 16.00.
look forward to hearing from you âŚ
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Fundraising this Autumn
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Some of our 2022 events.
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Fundraising this Autumn
On a wet and unusually windy Saturday in November we raised just over ÂŁ200 at the Cranleigh School Christmas Fair. Our thanks to all the people who came out and bought things from the stall. The Christmas chutney was our best seller this year. The money will be used for the Christmas Party and fund the hire of the Village Hall in Shalford for our new monthly meetings.
Monthly drop in
Please come and join us at Shalford Village Hall (GU4 8BQ) on the third Thursday of every month usually 2.30-4.00 pm. (This can vary due to the speakerâs availability). You will also have an opportunity to meet other members over a cup of tea or coffee.
We also arrange talks and activities .. details of which will be posted on the website and emailed to membersâŚâŚ.If you canât make it you can always get in touch with us: info@headandneckcancer.life
You can find more information about Shalford Village Hall at https://shalfordvillagehall.org.uk. Refreshments will be provided and remember there is plenty of car parking spaces!
In November we will have a visit from a Clinical Nurse Specialist from the Royal Surrey Hospital- more details to follow.
Our next meeting is on October 19th 14.30-16.00. We look forward to seeing you.
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Upcoming Events
If you haven’t seen an email from us recently, firstly check your spam, otherwise if would like to know about the events we’ve got planned please contact us: info@headandneckcancer.life
Can you help us by sharing your stories about your recovery?
We have found that âour storiesâ 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
âCan You Hear My Voice?â 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, âCan You Hear My Voice?â is a film about the arduous transition from life with a voice box, to one without. Itâs 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 theyâve ever performed, a sold-out performance at Londonâs 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.
âCan You Hear My Voice?â is an entertaining and triumphant testimony about a universal theme â 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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Jo “The Elf” runs for our charity
Jo took âelf and safety to the fast track!
One of our loyal supporters â and a former committee member of Second Chance â took the idea of ‘elf and safety to a new level just before Christmas.
Jo Brown celebrated her 48th birthday by running 10km around Camberley and Frimley in Surrey on a cold day on December 14 â dressed as an elf!
Her brave efforts raised ÂŁ35 for Second Chance. Thanks, Jo!
If you’d like to donate to Jo’s elf run, use our JustGiving page https://www.justgiving.com/headandneckcancer
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Learning about Side Effects
Weâve 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:Â
Cancer Drug May Cause Lasting Hearing LossÂ
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 â and around 50% of children â with significant, permanent hearing loss.
Dr Percy Ivy, associate chief of the NCIâs Investigative Drug Branch, was not involved in the study. But he commented: âThis study starts to explain why patients who receive cisplatin sustain hearing loss.â
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.â
One of the studyâs investigators, Andrew Breglio of the NIDCD, said: âThe new study differs from previous research because it takes a comprehensive look at the pharmacokinectics â or concentration â of the drug in the inner ear.â
Dr Ivy stated that hearing loss from cisplatin âis not a static injury â it doesnât 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.â
Dr Lisa Cunningham, from the NIDCD, who lead the research team, stated: âCisplatin is one of the most widely used anticancer drugs on the planet â and itâs saving a lot of lives.â
She added: âBut the hearing loss is permanent. So these patients are surviving and they will have hearing loss for the rest of their lives.â
She stressed: âWhat we would like to be able to do is to develop a therapy that will allow patients to take the life-saving drug â but preserve their hearing.â
*More information about this study from the US National Institute on Deafness and other Communications Disorders.
Â
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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. Itâs not only distressing, itâs 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.
Itâs not perfect â but, my goodness, it works for me. Thing is, you have to keep a bottle with you when eating out, but Iâve 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 donât 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 doesnât affect the taste of the food â at least not in my case.
Doing this also lessens the strain of chewing and swallowing, which can get very tiring. But donât do it with fizzy drinks, like cola. Doesnât work! Be interested to hear your comments or other useful tips.
Mary Bishop-Pinn
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Keeping in touch
Join our ZOOM call!
We are going to hold a Zoom catch up on Wednesday 10th February at 2pm. It would be lovely if you can join us.
Please contact us on: info@headandneckcancer.life for an invitation.
Even if you have never used Zoom – why not give it a go, it is easier than you might think: We send you a “link”, you click on it, your browser starts, you answer whether or not you want to use your microphone and you are in the meeting!
We will be sending out the Zoom invitations a week before the catch up – that means plenty of time to practice using Zoom – see our tips about that: Are you tech-savvy?
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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: âMost cancer patients with head and neck cancers have intensity-modulated radiation therapy (IMRT), which has been the gold standard treatment since 2011.
âThe 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.â
But with the new treatment â called optimised IMRT – Prof Nutting said each radiotherapy course is designed for the patient like a âbespoke suitâ.
Prof Nutting said: âThis 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.â
He added: âIt means many patients will be able to return to eating normally again after treatment.â
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 studyâs findings will change how patients are treated in the future.
âRadiotherapy is used to treat head and neck cancers, which usually respond well and there is a good chance of cure,â Dr Thomson said.
âThis 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.â
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
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Scary Mask or What?
How are you managing with the Covid regulations? How have you found managing with face coverings?
My brother Colin has been constructing model boats in his man-cave as long as I remember and has become well-known in the model boating world. He always wears a large mask to protect him from toxic fumes from the glue and resins he uses to stick the pieces of boat together.
However, one day during the first lockdown of Covid-19, he suddenly produced his âgas maskâ and announced he was going to wear it whilst shopping at the local supermarket.
His shocked family took one look at him and said: âNO!â âYou canât do that! Youâll give people a heart attack â you look like something from outer space!!â
Thankfully, he was only joking â but for a moment âŚ..
Mary Bishop-Pinn
Meanwhile elsewhere in Surrey…..
Other brothers in scary masks are available! My brother says he will wear it when he goes to his local vaccination centre for the jab, but then again, maybe not.
Lucy
Are you – âwell informed about or proficient in the use of modern technology, especially computersâ – if you are, you are âtech-savvyâ! Many of us have become a bit tech-savvy by using Face Time, Whatâs 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 onâŻline consultations, so now is a good time to start putting that right.  If you feel hesitant, here are a few tips:Â
- 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 âremote accessâ. 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. âŻ
- Practice using your mouse and keyboard if you havenât 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.
- Donât 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 havenât 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 Tescoâs 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 youâre having an online appointment – weâve all heard of those embarrassing stories where people unknowingly wander across the back of the screenâŚfor me my favourite was Charles Saatchi.âŻ
- 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 donât 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!âŻ
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 âZoomâ, âMicrosoft Teamsâ or âAttend Anywhereâ.
- 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 clinicianâs 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. Iâve 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 HotlineâŻFreephone: 0808 2000 247 (24 hours)
Good Luck
Lucy
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Soup No. 4
Hearty Vegetable and Brown Rice Soup
Internet Inspiration Soup
Now itâs getting colder I trawled through the Internet for thick soups suitable for liquidising. As always do always check that the ingredients and consistencies are suitable for any diet or texture that have been recommended by your dietitian and speech and language therapist.
Ingredients:
- 60g cooked brown rice
- 60g chopped broccoli florets
- 60g chopped cauliflower florets
- 1 carrot, thinly sliced
- 300ml stock
- 2 tsp dried basil
- 1 tsp dried oregano
- 1 tsp ground dried cumin
- Salt & freshly ground pepper, to taste
- ½ cup grated cheese
Cooking Directions:
- In a large saucepan, heat stock to boiling. Stir in brown rice.âŻCover and cook, over low heat, for 5 minutes.âŻ
- Add vegetables and oregano.âŻSimmer for about 5 minutes until the vegetables are tender.âŻ
- Add basil, cumin, salt and pepper.âŻLadle soup into bowls and sprinkle each with grated cheese.
Tell us what you think
Let us know your most easy to swallow soups and other favourite recipes by sending them to us at:
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Soup No. 3
Mulligatawny Soup
Internet Inspiration Soup
Now itâs getting colder I trawled through the Internet for thick soups suitable for liquidising. As always do always check that the ingredients and consistencies are suitable for any diet or texture that have been recommended by your dietitian and speech and language therapist.
Ingredients:
- 1 skinless chicken breast,
- 1 small onion, chopped,
- ½ tbsp. of oil
- 1 medium potato, peeled and diced
- 1 small green bell pepper, seeded and diced
- ½ Granny Smith apple, peeled, cored and diced
- 1 can (15 oz.) cannelloni beans, rinsed and drainedâŻ
- 1-1 ½ tbsp. curry powder
- 1 tsp. grated fresh ginger
- Cayenne pepper, to taste (optional)
- 3 tbsp. tomato paste
- ½ cup plain fat-free or low-fat yogurt
- 600ml vegetable stock
Cooking Directions:
- Place the chicken in a deep, large saucepan.âŻAdd the stock, beans, and the apple.âŻOver medium-high heat, bring the liquid to a boil, reduce the heat, and simmer gently until the chicken is white in the centre, about 25 minutes.⯠Remove the chicken and cut into pieces. Puree the remaining mixture.
- In a frying pan, heat the oil over medium-high heat.âŻSautĂŠ the onion and green pepper until soft, about 6 minutes.âŻMix in the curry powder, ginger and cayenne (optional) and heat until they are fragrant, about 1 minute.âŻAdd the pureed soup base, tomato paste and potato.âŻSimmer until the potato is tender, about 15 minutes.
- Add the yoghurt to taste.
Tell us what you think
Let us know your most easy to swallow soups and other favourite recipes by sending them to us at:
Red Lentil Soup
Now itâs getting colder I trawled through the Internet for thick soups suitable for liquidising. As always do always check that the ingredients and consistencies are suitable for any diet or texture that have been recommended by your dietitian and speech and language therapist.
Ingredients:
- 1 tablespoon butter
- ½ medium onion, chopped
- 1 carrot, finely chopped
- 2 celery sticks, finely chopped with any long fibres removed
- 1 clove of garlic, thinly sliced
- 1 teaspoon ground cumin
- ½ teaspoon ground coriander
- ½ teaspoon chilli powder
- 1 can of tomatoes,( if you find seeds tricky strain first)
- 200g red lentils
- Pinch of sugar, pinch of salt
- Squeeze of fresh lemon
Cooking Directions:
In a large pot, melt the butter. Add the onion, carrots, celery and garlic and cook over moderate heat, stirring, until softened, 5 minutes. Add the cumin, coriander and chilli powder and cook until fragrant, 3 minutes. Add the tomatoes and cook just until softened, 2 minutes. Add the lentils and 8 cups of water and season with salt. Simmer over moderately low heat until the lentils are very soft, 30 minutes.
PurĂŠe the soup.
Season with sugar, salt, squeeze of lemon and serve with plain yogurt or cream.
Tell us what you think
Let us know your most easy to swallow soups and other favourite recipes by sending them to us at:
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Soup No. 1
Pea Soup with Tarragon
Internet Inspiration Soup
Now itâs getting colder I trawled through the Internet for thick soups suitable for liquidising. As always do always check that the ingredients and consistencies are suitable for any diet or texture that have been recommended by your dietitian and speech and language therapist.
Ingredients:
- 500g pack of frozen petite pois
- 1 tablespoons of extra virgin olive oil
- 2 medium sliced shallots
- 400 ml of vegetable stock (or more)
- 3 tablespoons of chopped fresh tarragon
- Plain non-fat yogurt or cream (optional)
Cooking Directions:
Heat oil in heavy large saucepan over medium-high heat. Add shallots and sautĂŠ until golden and almost tender, about 7 minutes. Add peas, stock, tarragon; bring to boil. Reduce heat to medium and boil until flavours blend and peas are tender, about 7 minutes. Cool slightly.
Puree soup in blender until completely smooth. Add extra liquid if you feel it is too thick. Season with pepper and serve with yoghurt or cream.
Tell us what you think
Let us know your most easy to swallow soups and other favourite recipes by sending them to us at:
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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 wouldnât 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. Catherineâs 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 âI 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 eatingâ.
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. âit 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.â
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. Weâre looking forward to it.
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Website Update
Progress report on day 2
The switch-over to a new platform (WordPress) has happened and the very basics are in place.
You will see the amount of content increase over the coming days: writers and editors have been busy in the last few weeks and piece by piece they will be added to the website. Keep being patient!