This section is intended for anyone recently diagnosed or recently moved to Herefordshire to ensure awareness of the facilities, services and courses available in Herefordshire.  It also includes practical comments and suggestions.

Yeleni Therapy and Support Charity

Currently online only

Yeleni offer free complementary therapies to anyone who has had cancer in Herefordshire. They also have a cancer support group for all  types of cancer. Due to the COVID19 Pandemic they are currently offering online support  via a befriending service, online wellness sessions and free talking therapies.

Contact Yeleni on: 01432 342342

Email at: info@yelenisupport.co.uk

Moving Forward Course

currently online only

The free programme provides information, support and professional guidance on how to cope with and adjust to life after treatment. Topics covered may include: healthy eating, exercise, managing menopausal symptoms, lymphoedema, cancer fatigue, intimacy and relationships, and adjusting and adapting after diagnosis

The course is open to people who have had a breast cancer diagnosis within the last two years. breastcancernow.org

www.breastcancernow.org search ‘Moving Forward course’ for details online courses.

Living Well Programme at Worcester University

Potentially resume in September to December? – depending on coronavirus restrictions and funding

10 weeks free course sponsored by the Worcestershire Breast Unit Haven with advice on healthy eating and being more physically active.  It is a sociable course with a nutritionist in the first hour, then a tea break to have a chat with the other ladies and then an hour of various exercises, ranging from yoga, Pilates, tai chi, circuit training to Zumba dancing.

Look Good Feel Better

Temporarily suspended

A national charity that holds free 2-hour workshops for anyone that has had cancer to help with appearance and boost confidence after treatment.  Trained therapists give advice on skincare and make-up. Regular events are usually held at Worcester and Hereford see; www.lookgoodfeelbetter.co.uk

Macmillan Cancer Information and Support Service

There is a wide range of support available including benefits and welfare advice, befriending and emotional support.

Its Support Line Services are open 7 days per week between 9am and 5pm on 0808 808 00 00 and latest information is available at www.macmillan.org.uk/coronavirus

Herefordshire Macmillan Citizens Advice welfare benefits service.
Email at: macmillan@citizansadviceherefordshireorg.uk
Phone on: 01432 377587

Macmillan advice at Hereford hospital.
Alison Stemp
Macmillan Cancer Information and Support Advisor
hereford.cancerinfoandsupport@nhs.net
01432 355444 ext 5459
Macmillan Renton Unit Wye Valley NHS Trust The County Hospital,
Union Walk,
Hereford,
HR1 2ER

Mastectomy bras

Designed for comfort immediately post-surgery or any time after and often provide higher cut, flattering styles.  Look for front opening bras as post-surgery you will be advised not to put your arms behind your back to do up a bra. The  Makes  below are all available online. Marks and Spencer also provide a range of post mastectomy bras in store or online.

www.bettyandbelle.co.uk
www.nicolajane.com
www.amoena.co.uk
www.anita.com

www.pinkribbonlingerie.co.uk
www.royce-lingerie.co.uk/post-surgery-bras
www.naturana-shop.eu/en

Bra Boudoir

Supplies Amoena and Anita.  Fittings are available by appointment (outside lockdown), and include visits specialist visits from an Amoena representative for bras and prothesis.
www.thebraboudoir.co.uk
4 High Street, Ledbury HR8 1DS

VAT Exemption on Mastectomy Bras and Swimwear

https://www.gov.uk/hmrc-internal-manuals/vat-relief-for-disabled-people/vrdp15000

Mastectomy bras and mastectomy swimwear are available for mastectomies and lumpectomies (see: https://www.pinkribbonlingerie.co.uk/vat)

Comfort bras

Sloggi's Zero-feel bras have no band or seams and have very soft cup padding and come in a variety of colours.  Ideal post-surgery if tissues and scars are tender www.sloggi.com/en-uk/zero-feel

Lymphoedema

Lymphoedema can occur at any time after surgery/radiotherapy, even years later, so it’s important to be aware of the symptoms and how to reduce the risk of getting. Symptoms include swelling and fluid build-up in the breast area, arm, shoulder and back causing a tight heavy uncomfortable sensation.

According to The Complete Guide to Breast Cancer by Professor Trisha Greenlagh and Dr Liz O'Riordan, after a sentinel biopsy the risk is 5-10 per cent in your lifetime, or 25 percent after axillary clearance. Treatment may involve management by exercise, massage, moisturising, support sleeves and vests.

If you suspect you have Lymphoedema  contact your Breast care team or GP who can refer you o the specialist Lymphoedema team.

Lymph-What-Oedema – online information via its website and closed Facebook page www.lymph-what-oedema.com/out-and-about
Facebook Group: L-W-O Support Group

Information Sources

Vita magazine only available online: https://breastcancernow.org/information-support/download-order publications/current-past-issues-vita-magazine

The Complete Guide to Breast Cancer by Professor Trisha Greenlagh and Dr Liz O'Riordan, two expert doctors and breast cancer survivors.

Travel Insurance Insurance with – was set up by a lady that after being diagnosed with breast cancer had difficulty finding travel insurance: www.insurancewith.comJust Travel Cover - for people with pre-existing medical conditions www.justtravelcover.com/Medical Travel Compared  - for people with pre-existing medical conditions www.medicaltravelcompared.co.uk

Cooling Pillows and Packs

  • Hot water bottle filled with cold water and stored in fridge
  • JML Chillmax pillows
  • Koolpak Luxury Reusable Hot and Cold Gel Pack with Non-Woven Sleeve
  • B&M Chill Out Gel Pillow

Suggestions and Comments

  • Mammograms are given every year for the first five years after diagnosis.
  • Radiotherapy can cause pains for up to a year after treatment. If pains persist for more than 2-3 weeks discuss with your breast care nurse.
  • Herceptin can cause flu like symptoms, joint pain and difficulty getting up from kneeling/bending.
  • Aromatose inhibitors e.g. Anastrazole and Letrozole – if have side effects try another brand by asking your pharmacist, or using a different chemist, as the quality can vary.

British Lymphology Society

The British Lymphology Society is a dynamic and innovative body providing a strong professional voice and support for those involved in the care and treatment of people with lymphoedema and related lymphatic disorders, including lipoedema.

The Society seeks to achieve high standards of care and equitable access to treatment across the UK and promotes early detection and intervention and, where appropriate, screening and prevention.

www.thebls.com

Penny Brohn UK - Living Well with Cancer

Our story began in 1979 when our founder, Penny Brohn, was diagnosed with breast cancer. Penny, who grew up in Bristol, knew instinctively that she needed more than just care and treatment for her body.  She recognised that she needed to care equally for her, “mind, spirit, emotions, heart and soul”. With her close friend Pat Pilkington, she set out to find what she was looking for.

http://www.pennybrohn.org.uk/why-choose-us/40-years-story

Coppa Feel

CoppaFeel! was founded in 2009 by Kristin Hallenga and her twin sister Maren after Kris was diagnosed with secondary breast cancer at the age of 23.

www.coppafeel.org

We Get It

Wherever you’re at, however you feel, we get it.

Whether you’re in remission, living with cancer or just been diagnosed, we understand because we’ve been there. Angry, upbeat or just in need of some support? Whatever feels right, we get it. We provide support and information for people in Bath who are dealing with cancer. Come to a workshop, find a local resource or simply meet others who know how you feel.

Your experience. Your story. Your life.

www.wegetit.org.uk

Consensus document on COVID-19 vaccination for patients with lymphoedema Contributors:

Professor Peter Mortimer. Professor of Dermatology and Lymphovascular Medicine. Dr Kristiana Gordon. Consultant of Dermatology and Lymphovascular Medicine. Professor Derek Macallan. Professor of Infectious Diseases and Medicine. Professor Sahar Mansour. Professor of Clinical Genetics.

Professor Vaughan Keeley. Professor of Palliative Medicine and Lymphoedema.
Katie Riches. Lead Research Nurse in Lymphoedema, Breast Cancer and Palliative Medicine. Dr Julian Pearce. Dermatology Registrar and Academic Clinical Fellow.

COVID-19 is an infection caused by an infectious respiratory coronavirus. Vaccinations are currently being rolled out across the U.K to help protect the population from this infectious disease. There are currently four vaccines available; none contain live forms of the virus, so you cannot get COVID-19 infection from the vaccine. The vaccine mimics parts of the virus; this triggers the immune system to produce antibodies which protect from COVID-19. The initial dose gives some protection, but protection is better after the subsequent ‘booster’ dose, given at a later date.

This consensus document aims to give advice regarding vaccination to patients with lymphoedema, based on the best available evidence and expert opinion. It is important that individual patients liaise with their General Practitioner about their own medical circumstances, as this guidance cannot cover other medical problems patients may have, which can influence suitability for vaccination. In general, patients with lymphoedema are not considered to have a weakened immune system. Some patients with rare forms of genetically inherited lymphoedema may have weakened immune systems; you will have been told if this applies to you.

  • COVID-19 vaccination is advisable for patients with lymphoedema and should help your body produce antibodies to fight the virus should you encounter it in the future.
  • Patients with forms of genetically inherited lymphoedema associated with weakened immune systems should also have the vaccine. However, it is possible that these patients may not make a full immune response, and therefore should continue to take precautions.
  • Patients are recommended to accept whichever vaccine is offered, providing they have no other reason not to.

The vaccination is usually given as an injection into the upper arm. Within the areas of the body affected by lymphoedema, the immune cells which fight infection may not work as well. Vaccination into these areas may therefore result in a weaker immune response and less protection from COVID- 19. Damage to the skin within an area of lymphoedema can also act as an entry site for infection, so careful skin care and protection is advisable for areas of swelling. We therefore recommend that vaccination is avoided in these areas.

We have produced the following guidance to help select the most appropriate area of the body for vaccination:

  • If you have one arm affected by lymphoedema: Both doses of COVID-19 vaccine should be given in the unaffected, opposite arm.
  • If you have had the lymph nodes removed from the axilla (armpit) of one arm: Both doses of COVID-19 vaccine should be given in the opposite arm.
  • If both arms are affected by lymphoedema, but not the legs: Both doses of COVID-19 vaccine should be given into the thighs or buttocks.
  • If both arms and one leg is affected by lymphoedema: Both doses of COVID-19 vaccine should be given into the unaffected thigh or buttock.
  • If both arms and both legs are affected by lymphoedema: Both doses of COVID-19 vaccine should be given into the limb least affected by lymphoedema.

Please note that both the Pfizer and Moderna COVID-19 vaccine documents (in the footnotes) confirm that injection maybe given into the thigh. Lymph node swelling can occur after any vaccine and is a known side effect of both Moderna and Pfizer COVID-19 vaccines. It should resolve promptly after the vaccination.

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