How time flies and we are here again.  Whose we? That is your truly representing L-W-O Community and Mary Fickling from PhysioPod UK Ltd. We are raring to go and do our bit for raising lymphoedema awareness. 

Before I move on, I want to reflect on last years’ campaign and what we achieved. We reached more people across the globe in 2021 than either of us could have imagined and at the heart of everything we did we put #patientempowerment and #community engagement.

2021 Joint Campaign

This year’s aim is to strengthen the goals we set last year, and we have some of the Lymphoedema’s top community Practitioners writing and sharing their expertise with us.  Our theme this year is Lymphoedema from Top to Toe with our experts providing their self-care tips, we have case studies, testimonials, exercise videos, articles some with voice overs. I will be writing a blog everyday with my self-care tips and talking about the importance of lymphatic health with some of the challenges we face. Mary has produced amazing high-quality videos to compliment the information provided by our experts and has given a lot of time to researching our topics.

We are asking all of you who are part of the Lymphoedema community to share our posts so that we can reach patients, the public, clinicians, politicians, policy makers and health care providers.  Let us use Lymphoedema awareness week and world Lymphoedema day to show the world that

“Lymphoedema exists, we exist”

Events from British Lymphology Society Saturday 5th March – Friday 11th March

British Lymphology Society (BLS) have planned events throughout the week. They are asking wherever possible to share their events across social media using the hashtags #EveryBodyCan and #LymphoedemaAwareness. You can register for their webinars at:  https://event.thebls.com/Awareness-Week-22 the webinars are on Zoom.

Saturday 5th March

There is live talk with Trisha Goddard and BLS’s Rebecca Elwell on Talk Radio around 3:30pm, they will be discussing how to look after your lymphatic health and how to live well with lymphoedema. Listen live on DAB or here

Sunday 6th March

On World Lymphoedema Day, at 4pm Dr Kristiana Gordon presents “Lymphoedema: What Everyone Needs to Know”

Monday 7th March

For healthcare practitioners, Jane Wigg and Natalie Philips will talk about how Near-Infrared Fluoroscopy Lymphatic Imaging is changing the way swelling of the breast and trunk can be treated.

Tuesday 8th March

BLS will be launching a new resource, which is under wraps so tune in on this day.

Wednesday 9th March

Hannah Mae Roberts will be showing how movement can be fun and introducing low-intensity exercise and movement can be adapted for both seated and standing exercise.

Thursday 10th March

BLS will be launching a new Tool which at the time of writing is still under wraps.

Friday 11th March

Learn how deep breathing, relaxation, and group singing can be beneficial with the Lymph Notes Choir.

Introducing head and neck lymphoedema

"After surgery for head and neck cancer, it is common to have some swelling in your face or neck. This usually goes away within a few weeks. You are at greater risk of developing long-term swelling if: you had an operation to remove lymph nodes from your neck, you had radiotherapy after surgery. 

L-W-O Community has had members with Head and Neck Lymphoedema but recent call outs by me to talk to members with this Lymphoedema produced no results. So far in a recent poll, which ran on support group - no one ticked the box for head and neck Lymphoedema.

I found Head and Neck Lymphoedema (Secondary Lymphoedema) is one of the most difficult Lymphoedema's to write about.  According to Cancer Research UK there were 12,422 cases between 2016-2018 with 4,077 deaths.

Treatment for these cancers may combine surgery, radiotherapy, chemotherapy, or cancer medication. The surgery and radiotherapy treatment to the lymph node areas can increase the risk of Lymphoedema and scar tissue. These treatments are likely to disrupt the lymph function. The swelling can develop both externally and internally. Externally the swelling will be visible in the soft tissues of the face, mouth, and neck. Internally the swelling may develop in the oral cavity, tongue, throat, and airway. 

Head and Neck Lymphoedema, develops when the body is unable to transport fluid to the damaged lymphatic system because scarring from the surgery blocks lymphatic vessels in the neck or the radiotherapy treatment to the neck has damaged the lymphatic system. 

Health care providers tend to concentrate on the treatment of the cancer and very often the side effects like Lymphoedema become secondary. This will also depend in the UK where you live and which services are available, whether your Lymphoedema has been recognised, assessed, and diagnosed properly.

Treatment for Lymphoedema should be part of a multi-disciplinary approach which in the case of head and neck Lymphoedema may include Speech and Language Therapists.  The UK is developing a cancer pre-habilitation package of care for after diagnosis, but before cancer treatment starts. As a patient you are entitled to be consulted on every aspect of your care and a person-centred approach, which allows you to discuss treatment options, risk-reducing activities and access to Lymphoedema services.

Cancers to the head and neck are on average 3 - 5% of all cancers but imagine my surprise to learn that 90% of all patients treated for head and neck cancers will experience some degree of Lymphoedema. That is an exceptionally high figure. At the time of writing, I do not have an answer as to why being diagnosed with Lymphoedema after head and neck cancer treatment is higher, than being diagnosed with Lymphoedema from other cancers.

I do understand why our members who have this side effect after treatment would not want to talk to me about this type of Lymphoedema, or share in group how they feel because of the impact that this has on their lives.

“The impact of head and neck Lymphoedema has a serious impact on both physical and mental health.  The physical side effects may include facial disfigurement due to increased swelling and this can have a devastating effect on self-esteem.

Breathing, hearing, speaking, swallowing and vision may all be affected. A person with head and neck Lymphoedema may experience a loss of identity.”

Management strategies are key and include, education, skincare, stretching and movement, both manual lymphatic drainage and simple lymphatic drainage, Kinesio taping, compression.

As with all Lymphoedema life-long self care for our members is crucial and priorities will include:

• Skincare, daily washing and moisturising
• Shaving with an electric razor and it is important for men to continue with normal shaving habits
• Antiseptic treatment of cuts or scratches to the skin
• Good oral hygiene, mouth and dental care is essential
• Nutritional Care
• Protect face and neck from sunburn
• Do not wear restrictive clothing around the neck
• Lymph Drainage

Stretching and movement are very much part of the daily routine for head and Lymphoedema. Simple facial movements like frowning, smiling, and yawning can make a significant difference to swelling and these should be part of a daily routine.

With thanks to Christine Talbot
 Lymphoedema and Bowen Practitioner

Advice given following head and neck surgery is patient specific with particular attention to the extent of procedures undertaken, listed below are some situations to consider:- 

1. Diligent mouth care is essential for preventing oral infection, dental caries and infection which could be transferred from the mouth to the heart or kidneys. Halitosis due to poor oral hygiene is not pleasant and may cause further isolation from others and a feeling of shame linked to poor self-management. 
2. Both non and peg fed patients may have a fear of swallowing, so introducing anything into the mouth might cause anxiety and the fear of choking.  Patients on peg feeds tend to manage changing the bag solutions and re setting the pump themselves but the responsibility of this when coming for an appointment may cause anxiety, some find the feed solutions nauseating..
3. Patients following dental extraction, jaw and palate reconstruction may find articulating jaw movements challenging, particularly when ingesting food which is often semi liquid to begin with and may progress more towards solids when mastication improves. Damage to the oesophagus may cause strictures requiring periodical surgical intervention to stretch the oesophagus to allow the passage of food.  There may be inter-oral scar tissue and radiotherapy damage preventing normal articulation of the tongue for speaking and eating.
4. Laryngectomy patients may have difficulty and anxiety when communicating with others and be fearful of the endotracheal tube..  Scar tissue may tighten around the bronchus, tube and oesophagus whereby the hole requires stretching and the valve to be sized correctly.
5. Head and neck surgery may involve extensive excision of or damage to facial nerves, muscles, cervical lymph vessels, and lymph nodes.  The effective passage of lymph transportation to the neck protects against infection and disease, a higher risk of infection is likely due to a retained high protein rich oedema.  When drainage processes are impaired facial and neck swelling may become apparent causing facial disfigurement, pain, inability to control oral and nasal secretions and a psycho social isolation due to embarrassment which affects long term recovery and situation management.  Auditory damage to the finer structures and nerves may cause impaired hearing and the inability for the ear to drain naturally causing deafness and a warm, moist environment for infection to thrive requiring regular evacuation of the Eustachian tube, so too Tinnitus may develop and become relentless
6. Cranial and facial sinuses may also become blocked causing severe headaches and facial pain.
7. The cumulative effects of the above can transcend down creating muscular skeletal stiffness, pain into the shoulders and back, immobility and or a fear of mobility.

In essence overall understanding of the enormity of surgery confronting these patients requires a deeper awareness and compassion with skilled guidance and support through the life changing situations with which they, their families and loved ones well may encounter in the immediacy of surgery, followed by the long often endless and lonely insecurity and fear of the road to a more sustainable post-operative recovery, invariably involving chemotherapy, radiotherapy, numerous appointments with various departments encompassing a loss of self-confidence, self-worth, day to day control and the burdensome responsibility and guilt in involving others.

Suggested Movements/Exercises 

'Over the years, I have added a number of movements/exercises which I advise my clients to try. Ideally these should be performed with the assistance of a partner or supportive other.  These include a mixture from my training in Indian Head Massage, Bowen Therapy and Manual Lymphatic Drainage (MLD).

N.B. In the first instance, it's important to assess full range of motion throughout the body to the lower trunk and also to bear in mind that those living with head and neck Lymphoedema can get fatigued very easily,  breathing might be a problem, raising arms might be a problem, so I recommend that the majority of these exercises should be completed with a supportive other.

Please also note that some of my suggested exercises are demonstrated very comprehensively in the Danielle Collins yoga video below. 

If possible, facial mobilisation (facial yoga) should be done every day.

I have also made the following video to demonstrate some of my key tips for movement and an extended list of my recommendations follows the video. It is important to start gradually and build it up. Many people are surprised, that very quickly, they can make the moves that they never dreamed they could do.

1. Eye exercises, pressure points from the bridge of the nose to the forehead.
2. Scalp Lifts: perform scalp lifts to help relieve pressure all around the head
3. Hair Tugs: gentle hair tugs all over the head, particularly over the crown which can feel very tight.
4. Two finger vibrations: using one hand to support the head, use the other hand to do two finger massages all over the scalp and behind the ears, swap hands to do other side. Two finger vibrations from the Occiput incorporating the trapezius and lavator scapulae muscles releasing severe tension and radiating pain and stiffness into and across the shoulders and down the upper and middle part of the back. This may help to free up the scapula and reduce deep scapula related pain and associated headaches. 
5. Ear lobe movements: to ease ear aches and relieve congestion, pull the ear out from the ear lobe and forward to drain down the neck, repeat both sides.
6. Ear Pinching: soothe by gently pinching the ear around the outside.  To drain the ear, place an index finger in the soft spot behind the ear lobe, push up and roll back down. Repeat both sides to balance.
7. Temporal massage at the top of the ear, doing half circles backwards to relieve upper face, eye and ear pain. 
8. Tongue stretching: putting the tongue in and out of the mouth, moving the tongue around from side to side, around up and over the teeth, pushing into the cheeks and the gums and roof of the mouth to help drain the soft tissue, if this is difficult, these areas can be drained using an index finger, or the back of a toothbrush.  
9. Neck and shoulders tension and stiffness:- chin to chest tilts to centre and either shoulder, rolling chin from side to side. The larynx (voice box) if still insitu can be gently rocked from side-to-side with index finger, this might help with speech. 
10. Punches: forward punch, forward punch with thumb turned downwards, upper cuts, trunk twists - to work muscles groups and assist breathing
11. Other shoulder exercises, shrugs, rotations, arm raises

Cheeky Wipes

To mop up excess salivation or nasal drips use a small towelling square called a 'Cheeky Wipe', available from cheekwipes.com, originally an eco-idea to replace baby wipes.

Organic Oils

Softening scars using Argan or Rio Rosa organic oils, these oils contain vitamins to feed and nourish the area relieving scar related stiffness.

"Outside of the Box" Tips

Jade facial massager and jade roller, helps stretch the skin and feels good working around the bone contours, can be cooled in the fridge prior to use.

With thanks to Cancer Research UK

I came across the Physiopod site and thought that deep oscillation therapy would be worth a try; luckily I was able to locate a qualified therapist not too far from where I live. Sue Hansard is fantastic: she has many years of experience treating Lymphoedema in head and neck patients and told me she’d had some great results with deep oscillation.

The treatment itself is painless and in fact actively relaxing, and to my astonishment I could see a visible difference to the swelling from the very first session. I started with twice weekly treatments and my Lymphoedema improved significantly – * my jawline came back and my facial symmetry improved; my speech became clearer, my swallow was easier and my neck mobility returned meaning I could sleep on my front and swim front crawl again!

Sue taught me a full range of techniques including self massage and compression but I will continue to visit for deep oscillation at regular intervals as it’s made such a difference to me. I only wish it was more widely available, so that others could benefit as I have."

Information with thanks to Cancer Research UK

The most common type of tongue cancer is squamous cell carcinoma (SCC). Squamous cells are the flat, skin like cells that cover the lining of the mouth, nose, larynx, thyroid and throat. Squamous cell carcinoma is the name for a cancer that starts in these cells.

Squamous cell carcinoma as malignant tumor disease in the mouth 

What are the symptoms of tongue cancer? 

The symptoms of tongue cancer might include:

• a red or white patch on the tongue that won't go away
• a sore throat that doesn't go away
• a sore spot (ulcer) or lump on the tongue that doesn't go away
• pain when swallowing
• numbness in the mouth that won't go away
• unexplained bleeding from the tongue (that's not caused by biting your tongue or other injury)
• pain in the ear (rare)

It's important to remember that these symptoms might be due to a less serious medical condition. But it's best to check symptoms with your GP just to make sure.

With huge thanks to Katie Barr, Dental Nurse

at Park Dental Practice, Nottingham 

Both Christine Talbot  and Gaynor Leech have mentioned the importance of oral hygiene in self care of head and neck Lymphoedema,

We invited Katie Barr, Dental Nurse to provide some information on this subject.. Katie educates patients in the care of their teeth, provides treatments to prevent oral problems and offers dietary advice for oral hygiene. Thank you so much Katie.

Interdental Cleaning

Flossing

Floss is the second most used interdental aid. This tool is more technique specific, but if performed correctly, it can be just as effective as the TePe brushes.

You need a length of floss to ease down the interdental space, you then need to curve it around each side of the tooth to remove the plaque biofilm gathering there. Floss isn’t effective if it’s just pulled down between the teeth, it has to hug the sides of the teeth.

Therefore with this aid, some can be using it and still have gum inflammation, due to the wrong technique being used. It should always be done in the mirror, so as to see and ensure  teeth are being cleaned properly.

Tooth Brushing

Brushing your teeth is very important, as it reaches 60% of the tooth surfaces but it doesn’t reach the interdental areas. Brushing should be done twice daily, ideally first thing in the morning/after breakfast, to remove any plaque and bacteria that has settled over night and then in the evening after the last meal of the day; so as not to leave the days accumulation resting on the teeth overnight.

There are two types of brushes typically used around the UK – the electric and the manual brush.

The manual brush is as states, when brushing, you have to manually make the recommended circular movements with the brush head to remove the plaque, whereas with the electric brush, it rotates for you, so you only have to hold the brush over each tooth.

The brush should be held at a 45 degree angle and to brush half on the tooth, half on the gum line, so as to stop the accumulation of plaque along the gum line. It’s important not to scrub the brush or press too hard on the gum as this can cause recession. Brushing should be done for 2 minutes each time – 30 seconds for each quadrant.

Fluoridated toothpaste should be used to brush your teeth, as it helps to strengthen the enamel and protect it from acid attacks caused by sugary food and drinks. By protecting the teeth from these acid attacks, it means less decay and cavities form, giving healthier teeth. Fluoride also has a remineralising effect so after any sugary food or drink has been consumed, it helps to re build the enamel before it is destroyed.

Mouthwash

Mouthwash is great for creating fresh breath and as a secondary source of the aforementioned fluoride. However, it has no role in plaque removal, so shouldn’t be used instead of brushing or interdental aids.

Mouthwash contains a smaller amount of fluoride than toothpaste, so should be used either before brushing with fluoridated toothpaste, or at a separate time to brushing i.e. after a meal, so as to give you fresh breath or if you had just eaten something very sugary/acidic, then this will help repair that enamel without having to constantly be brushing your teeth.

Poor Oral Health is linked to Gum disease and other general health problems

"In the latter part of the 20th century, peer-reviewed research began to appear documenting the co-occurrences of periodontal disease and several serious medical conditions, including cardiovascular disease (CVD), stroke, diabetes, respiratory disease, and poor birth outcomes. These initial studies spurred additional investigations, and over the past 20 years many additional associations began to appear in the literature, including links with erectile dysfunction, obesity, cognitive decline, rheumatoid arthritis, and speculation that periodontal disease can increase complications of COVID-19" 

Those with Gum disease are almost twice as likely to suffer from a heart condition as it’s thought any bacteria gathering in the mouth can get to the blood stream. The bacteria from the mouth creates proteins which cause blood platelets to clump together and create a clot in the vessels to the heart.

It has also been found that those with diabetes are more likely to have gum disease than those who don’t. This is because diabetics are more prone to infections in general. Those with uncontrollable diabetes or who don’t know they are a diabetic, are the most at risk of developing gum disease."

We decided to check the research...