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Rare cancer organisation: Voice for rare and less common cancers

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Rare cancer organisation: Voice for rare and less common cancers

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Cancer52 | The common voice for rare and less common cancers

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Cancer52 is an alliance of over 90 organisations, united in improving the future for everyone affected by rare and less common cancers.

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HAS COUNSELLING

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Are you looking for support?

Call our dedicated Support Line: 9am-5pm Monday-Friday

Join our Facebook Forum: 24/7

Join our team for TrekFest The Beacons this September. Take on the 25km or 50km challenge and be part of this stunning event.

Support Sessions

Have you, or someone you love been affected by a brain tumour? Are you looking for information, guidance or simply to connect with others?

​Our regular Support Sessions are here to help.

Help us support more people like Sharon

Find out about the

Together We Are Stronger Appeal

Jane's Story - a powerful short film about how support can change a life

When Jane was diagnosed with a brain tumour, she was worried about being able to look after her son and frightened about the future. But with our support and specialist counselling she rebuilt her life.

Please help us to be here for more people like Jane

Information, guidance and specialist advice on coronavirus (COVID-19)

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Welcome to Brain Tumour Support | United Kingdom

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Homepage for Brain Tumour Support, the brain tumour charity dedicated to supporting patients, families, friends and carers. Founded in 2003 under the name of Hammer Out, it pioneered and continues to lead the way in delivering specialist support to anyone affected by any type of brain tumour.

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Has telephone support and resources available and support for younger people as well

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The Swallows Head & Neck Cancer Support Group

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The Swallows Head & Neck Cancer Charity was formed by like minded cancer patients to help and support fellow sufferers and their caregivers.

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Since having to suspend our regional support group meetings due to Covid-19 restrictions, we have been hosting virtual meetings using Zoom and these are proving to be very successful.

We host virtual meetings twice a month on:
the first Wednesday at 16.00
the third Monday at 18.30.

If you have not already registered with us
for our virtual meetings and would like to participate please register HERE.

Mon, July 19, 2021 at 18:30 - 19:30

I am so glad I found out about this organisation the medical profession should be highlighting it to all new patients.

The facilitator did an excellent job making sure everyone had the opportunity to speak. The timings were perfect.

Realising we are not alone (me as a carer and my husband) that it is ok to be really tired, ok to sometimes feel brain dead.

A major point was to learn how others coped, how some felt after an operation, how others felt after radiology etc.

This 'course' has reaffirmed that I am going in the right direction and that other people are there to support me through the rest of my journey.

Fairly happy with my thinking at the moment. Good to see people in the same boat though, it's not always easy talking to people who haven't had the experience.

The session was sensibly structured and made good use of time available. Involving medical team staff gave people the chance to ask questions and raise issues not necessarily possible in the clinic setting.

As I do not know anyone who has had cancer of the head or neck I felt very isolated from people I know as they did not understand the problems of eating, drinking and swallowing that the treatment can cause, I can now talk about the issues I have with people with similar problems and get more positive help.

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Since having to suspend our regional support group meetings due to Covid-19 restrictions, we have been hosting virtual meetings using Zoom and these are proving to be very successful. We host virtual meetings twice a month on: the first Wednesday at 16.00the third Monday at 18.30.

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Vipoma; Leiomyosarcoma; Cholangiocarcinoma; Juxtaglomerular

Primary cardiac tumours

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Learn about the least known types of cancer

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Melanomore support group based at St Luke's

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Melanomore support group based at St Luke's

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Oracle Cancer Trust is a registered charity in England and Wales (1142037). A company limited by guarantee. Registered company in England and Wales (7125497). Registered address: Liles Morris Accountants, 1st Floor, 80 Coombe Road, New Malden KT3 4QS

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Funding Research to beat head and neck cancer Support us in our fight against head and neck cancer to discover newer and kinder treatments. View Research Donate Now Oracle Cancer Trust is the UK's leading national charity dedicated to funding head and neck cancer research DONATE TODAY TO HELP PEOPLE WITH HEAD AND NECK CANCER...

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Information and Support Contact - 0808 2080 888

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Blood Cancer UK is a community dedicated to beating blood cancer by funding research and supporting those affected.

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Offer free keep in touch support service - up to 12 sessions available

Phone - 0800 358 7200 Email - info@roycastle.org

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We offer lung cancer help and support to anyone who has been affected by the disease. From the latest lung cancer information to a dedicated forum and free Ask the Nurse helpline, we're here to help.

If you have a question, need emotional support or just want to chat about lung cancer, call us now free on 0800 358 7200.

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Lung Cancer Help and Support - Roy Castle Lung Cancer Foundation

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We offer lung cancer help and support to anyone who has been affected by the disease. From the latest lung cancer information to a dedicated forum and free Ask the Nurse helpline, we're here to help. If you have a question, need emotional support or just want to chat about lung cancer, call us now free on 0800 358 7200.

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Supporting patients with ALK Posive lung cancer

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Bowel Cancer UK

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This site is best viewed with javascript enabled. For help enabling javascript please click here.

Check out our Christmas collection today

Shop now

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We're the UK's leading bowel cancer charity. We're determined to save lives and improve the quality of life of everyone affected by bowel cancer.

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Neuroendocrine

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No doubt you’d rather you weren’t visiting our website - we would too. But as you are, we hope that

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Brainstrust - coaching, counselling and hypnotherapy

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Brainstrust - coaching, counselling and hypnotherapy

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Contact molly@brainstrust.org.uk / 01983 217 152

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The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.
Malignant
Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites
Mortality
The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.
Non-malignant
Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.
Survival
The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called 'overall survival' or 'OS'.
Routes to Diagnosis
Under the 'Routes to Diagnosis' tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A 'route to diagnosis' is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.
More information
If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK's Cancer Statistics Explained
http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven
If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:
https://www.brainstrust.org.uk/advice-glossary.php

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Home - Brainstrust, brain tumour charity

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The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

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We're moving further, faster to help every single person affected by a brain tumour.

Are you ready to take on Game 34?

Whether you're a pro gamer or just starting your gaming journey, Game 34 is your chance to put your skills to the ultimate test and unlock the greatest achievement of all - a future where everybody affected by a brain tumour lives a longer, better life.

Get support

If you're newly diagnosed and not sure where to start, our free information pack has a range of practical advice and also includes information on other sources of support.

News

If you or a loved one has a brain tumour diagnosis, the spirit of the season might be more important than ever. Here are some ideas for getting festive with family and friends.

Podcast

We hosted our first ever Masquerade Ball. Anna and Chandos, explain why events like this are so crucial to young people whose lives have been affected by a brain tumour diagnosis.

Research

Two of our funded researchers have won awards at the Society of Immunotherapy for Cancer (SITC) annual conference!

The Twilight Walk 2024!

By all walking together, up and down the UK, we can make this the biggest and best Twilight Walk yet! Will you be part of this incredible movement?

Donate to The Brain Tumour Charity

Brain tumours are the biggest cancer killer of under 40s and we need your help to accelerate a cure! Your donation can make a real difference.

Learn how to spot the signs

Better Safe than Tumour is our campaign to raise awareness of the early signs and symptoms of a brain tumour to improve early diagnosis times

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The Brain Tumour Charity is the world's leading brain tumour charity, moving further, faster to help everyone affected by a brain tumour or brain cancer

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Welcome to Butterfly Thyroid Cancer Trust

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Join us with Prof Mark Strachan for a webinar on Thyroid Hormones after Thyroid Cancer. 19th May at 6-7pm. This is a free event but you need to register. Email us here: enquiries@butterfly.org.uk Title your email: Webinar. The link to join will be emailed to you.

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Coronavirus Message to Members

Hello

First of all, and most importantly, we hope you are able to keep safe and well during these worrying times.

Everyone is experiencing difficulties varying from feelings of loneliness to concerns about the health of loved ones. Our concern is to make sure that you are aware of the guidelines that will help you to stay safe and to let you know that we are here to help.
Shielding Information for Laryngectomees
We are here to provide support for you but we are not health professionals. However, we thought you might find helpful the advice being given by speech therapists in Berkshire, Oxfordshire and Wiltshire. You can find it here in full:
Coronavirus Advice for Laryngectomees
Access to our office and PO Box is limited but we are able to maintain contact through our email address which is info@cancerlt.org. If laryngectomee members are experiencing financial difficulties we may be able to help. Please request a grant application form and we will deal with it as quickly as possible.

Future Events

At the moment the Blackpool lunch has been cancelled. We will let you know if there is more information about future events.

Video

Here is a link to a video from a number of different NHS professionals who look after cancer patients. We hope you find it reassuring.
YouTube Video
We are all hoping that life will return to normal as soon as possible but in the meantime, we are here to help.

Best wishes from The Trustees

Wendy Thompson, Carole Stainton & Ros Oswald

Latest news

CLT Christmas Lunches December 2020
When Sydney Norgate founded the Charity in 1985, he was very keen to arrange social functions for laryngectomees. He knew that enjoyable social events, particularly involving good food and, perhaps, a beverage were an important part of the process of recovery for larrys and their families. We have continued to arrange and support Christmas Lunches every year since the early days. This year, in view of the Coronavirus pandemic, we have had to make the difficult decision to postpone our normal Christmas Lunches until we can be confident that the lunches can go ahead in safety. We are monitoring the situation carefully and will be planning social events again as soon this is possible. We would like to offer you our very best wishes for a Happy Christmas despite these unusual circumstances and look forward to meeting again in the future.

New publication June 2020: The Story of Funny Grandad - a children's book about laryngectomy

A new 2017 edition of The Travel Guide for Laryngectomees is now available for download or to order.

Updates for 2019 are now available to download for The Travel Guide for Laryngectomees.

The March 2021 Newsletter is now available for download.

Read about Ray Coates cancer journey here: Ray Coates The Voice Within

Press Release September 2013 - Free self-help book available for all laryngectomees

A new 2013 edition of Laryngectomy is not a Tragedy is now available for all laryngectomees, their families and health professionals free of charge from the Cancer Laryngectomee Trust.

Written by a laryngectomee, in a straightforward, humorous style illustrated with cartoons, the book is packed full of practical advice and information, as well as reassurance.

The original author, Sydney Norgate, wrote from personal experience of the day-to-day problems caused by the loss of normal speech back in 1984. He described his method of learning substitute speech.

Now updated with the latest information on current speech methods and future developments, the book promises to be an even more valuable source of advice and inspiration to all those facing or recuperating from the operation.

Speaking about the updates, Dr Nicola Oswald MBChB, said: "The prospect of losing the power of speech can be just as daunting as fighting cancer, this book now includes the latest information about speech methods to help and support those learning to speak again, as well as their families and health professionals."

For more info click here

Our aim is to promote and assist the relief of all people in the UK who have had a laryngectomy - This includes our FREE book 'Laryngectomy is not a Tragedy' by Sydney Norgate and Dr Nicola Oswald MBChB.

The Cancer Laryngectomee Trust was formed in 1985 by a laryngectomee, Sydney Norgate, to help provide support and understanding for people who are about to have, or have had, a laryngectomy.
Since the creation of the charity, we have not only provided a vital support network for our members, we have also:

Created a mailing list of patients and supporters who receive emergency recognition aids and regular newsletters;

Arranged rehabilitation functions for larygectomees and their carers;

Promoted awareness and training in allied organisations, such as St Johns Ambulance and The Red Cross;

Lobbied Parliament and the DSS in order to gain recognition of the condition as a disability and supported individual members in their application for appeals;

Given small grants to members for a variety of purposes.

Published the Travel Guide for Laryngectomees

Broadcast a BBC Radio 4 Appeal

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Hello First of all, and most importantly, we hope you are able to keep safe and well during these worrying times. Everyone is experiencing difficulties varying from feelings of loneliness to concerns about the health of loved ones.

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Diagnosis is a scary time, before your journey starts and these amazing drugs take effect. There is outdated, inaccurate information on the web. CML support was the place where I found a community of fellow patients, good information and advice, together with accurate helpful guidance and knowledge.

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Diagnosis is a scary time, before your journey starts and these amazing drugs take effect. There is outdated, inaccurate information on the web. CML support was the place where I found a community of fellow patients, good information and advice, together with accurate helpful guidance and knowledge.

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Leukaemia Care offers groups such as: virtual support, buddy support and online counselling

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Leukaemia Care - Support for anybody affected by leukaemia - Leukaemia Care

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Leukaemia Care provides trusted information, support and services for anyone affected by leukaemia, MDS or MPNs across the UK.

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Has online support, buddy support etc

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Thank you for your support.

Time to dust off your Christmas accessories and show you support for people affected by lymphoma.

The Blood Cancer Alliance (BCA) hosted a roundtable on unmet needs of ethnic minority patients in blood cancer.

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We are the UK's only charity dedicated to lymphoma, the fifth most common cancer. We've been providing expert information and support for over 30 years, helping thousands of people. We are here for you, however you are affected by lymphoma.

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MDS (group of malignant blood disorders)

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MDS (group of malignant blood disorders)

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MDS Patient Support Group: Information & Help for those affected by MDS

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UK charity giving support on Myelodysplastic Syndromes: Helpline, Specialists Centres, Patient Stories, Medical Research News, Patient Forum, Local Meetings

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Healthcare Professionals

We don't just provide resources and support for patients, but also for Healthcare professionals - offering more detailed information about the latest treatments, improvements in clinical practice and material designed specifically to meet their educational needs.

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Myeloma UK - Get information, help and support

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We don't just provide resources and support for patients, but also for Healthcare professionals - offering more detailed information about the latest treatments, improvements in clinical practice and material designed specifically to meet their educational needs.

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Your shopping basket is empty.

Have you, or someone you know, been diagnosed with bladder cancer? If so, then we're here for you.

We're a UK-based bladder cancer charity founded and run by bladder cancer survivors and their families, so we know EXACTLY what you're going through. We support everyone affected by bladder cancer, we help to raise awareness, support medical research and we campaign to affect policy at the highest levels to bring about change in bladder cancer treatments. Our aim is to achieve better outcomes and quality of life for all those affected.

If you think you may have bladder cancer but you haven't yet had a confirmed diagnosis, you can find out more in our LEARN section. We explain the key facts, symptoms and the tests that can be done to confirm a diagnosis. Remember, there are many other illnesses that cause similar symptoms.

Take a look at our GET HELP section if you've just been diagnosed with bladder cancer and you're not sure what will happen next. There you'll find lots of information on likely steps in your treatment together with advice on questions you can ask your doctors and consultants. You may feel very alone at the moment, but we're here for you. We have the largest patient and carer forum for those affected by bladder cancer in the UK. Knowing that there are other people who know and understand what you're going through can make a tremendous difference.

Perhaps you'd like to find out how you can help to support us? You'll find lots of ideas in GET INVOLVED.

Please explore our website to find as much information and support as you need. If you still have questions, please get in touch. We're always happy to help.

Cancer hasn't stopped during the pandemic. Contact your GP if you have:

Bleeding that doesn't come from an injury
Weight loss / loss of appetite
Pain / infection that won't go away

If you have cancer, you will get checked & treated. The NHS will give you the care you need.

For information on how the Coronavirus pandemic is affecting bladder cancer patients, please see our page on COVID-19.

YOU'RE NOT ALONE.
We're here to help you in your fight!

About us

Fight Bladder Cancer started from a very personal battle. Andrew, one of our founders, was diagnosed with a Stage 4, G3 bladder cancer in Summer 2009. During his battle Andrew and his wife, T, made contact with a fellow bladder cancer patient and his partner. They found that talking to other people affected by bladder cancer who really understood what they were both going through helped them immensely.

Initially set up in 2009 as a support group, Fight Bladder Cancer has developed into a national charity that is making a real difference in the field of bladder cancer both in the UK and around the world. Andrew died in 2019, however his vision lives on. Fight Bladder Cancer is now run by a group of dedicated and passionate staff members, and supported by amazing volunteers. The majority of the trustees are patients and carers, and they ensure that we keep focused on our objective - a charity that will always have patients and carers at its heart.
Read our full story here.

Want to subscribe to our FIGHT! magazine?
For news & views on bladder cancer, patient stories and the latest details of available bladder cancer clinical trials, head to our subscriptions page.

We've done everything we can to make all the information on this site as accurate as possible. Whilst we have had support from a small team of medical professionals advisors to review the general medical content of this site, please remember, that only YOUR medical team can give YOU specific advice about YOUR symptoms or illness. We encourage you to discuss any potential options with them.

This website uses cookies to ensure you get the best experience on our website. Read more. Got it

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Your shopping basket is empty. We're a UK-based bladder cancer charity founded and run by bladder cancer survivors and their families, so we know EXACTLY what you're going through. We support everyone affected by bladder cancer, we help to raise awareness, support medical research and we campaign to affect policy at the highest levels to bring about change in bladder cancer treatments.

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Bladder

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May is Bladder Cancer Awareness Month 10/05/2021

During May, Action Bladder Cancer UK is working to raise awareness of bladder cancer, the symptoms, the issues for patients and the need to fund vital research. You can download the ABC UK Bladder Cancer Symptoms guide here: ABC UK Bladder Cancer Symptoms Guide (actionblad...

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May is Bladder Cancer Awareness Month 10/05/2021 During May, Action Bladder Cancer UK is working to raise awareness of bladder cancer, the symptoms, the issues for patients and the need to fund vital research. You can download the ABC UK Bladder Cancer Symptoms guide here: ABC UK Bladder Cancer Symptoms Guide (actionblad...

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Support for using public toilets - bladder issues

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Support for using public toilets - bladder issues

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If you have problems with bowel or bladder control, or you have a stoma, you may feel worried about going out. Planning ahead can help you feel more confident.

A toilet card is a card that you can show quickly and easily to staff in shops, pubs and other places. It explains that you have a medical condition and need urgent access to a toilet. Sometimes it is also called a bladder and bowel card or a 'no waiting' toilet card.

You can order our Macmillan toilet card to carry and use when you are out in public. It also comes with a fob version that can be attached to a key ring. We cannot guarantee that it will work everywhere. But we hope it helps you get access to a toilet without any awkward questions.

The Bladder and Bowel Community also offer a free Just Can't Wait toilet card and phone app.

If you are going somewhere new, it is a good idea to plan ahead and find out where toilets are before you go. Many areas have lists or maps of the local public toilets. These are often on local authority websites. Try:

typing 'public toilets' and the name of the place you are visiting into a search engine, such as Google

visiting the website toiletmap.org.uk to see a map with details of public toilets

downloading a toilet app for your phone that can help you find a public toilet.

Disabled toilets often have more privacy and space. The National Key Scheme (NKS) offers access to over 9,000 locked disabled toilets in the UK.

You can buy a key online from places such as Disability Rights UK. You can also order a guide that tells you where the toilets are.

Below is a sample of the sources used in our bladder cancer information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk

Mottet N, Bellmunt J, Briers E, et al. Non-muscle-invasive bladder cancer (TaT1 and CIS). European Association of Urology (Internet), 2021. Available from uroweb.org/guideline/non-muscle-invasive-bladder-cancer (accessed September 2021).

Witjes JA, Bruins HM, Cathomas R, et al. Muscle-invasive and metastatic bladder cancer. European Association of Urology (Internet), 2021, Available from uroweb.org/guideline/bladder-cancer-muscle-invasive-and-metastatic (accessed September 2021).

This information has been written, revised and edited by Macmillan Cancer Support's Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Dr Ursula McGovern, Consultant Medical Oncologist.

Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF's 10 criteria for trustworthy health information.

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Using public toilets - Macmillan Cancer Support

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If you have problems with bowel or bladder control, or you have a stoma, you may feel worried about going out. Planning ahead can help you feel more confident.

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The UK’s largest and most active patient-led kidney cancer charity helping you find support information, and be part of a caring and knowledgeable community

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Have counselling service

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The UK’s leading kidney cancer charity for over 20 years

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Mouth Cancer Foundation | Helpline: 01924 950 950

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The Mouth Cancer Foundation exists to save & improve the lives of patients, carers & survivors, increase awareness & education about all head & neck cancers.

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We do. We are here to support all UK mesothelioma patients and their families. If you need information, support, help with benefits or compensation, or would like to speak to a nurse who is an expert in mesothelioma, we can help you.

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Mesothelioma UK | Supporting people with this asbestos cancer

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We do. We are here to support all UK mesothelioma patients and their families. If you need information, support, help with benefits or compensation, or would like to speak to a nurse who is an expert in mesothelioma, we can help you.

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Oesophageal: has online support/1-2-1 support

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Oesophageal: has online support/1-2-1 support

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Goodnight Acid Reflux, Hello Sleep! Bed Wedge special offer from the OPA

Welcome to the OPA Cancer Charity
The OPA has led the fight against oesophageal and gastric cancers for over 30 years. Their purpose is to support patients, families, carers and to raise awareness of these cancers and their prevention. Whatever stage you're at the OPA is here to help you.

With up to 20% of the population experiencing regular Reflux symptoms. Click here for the Eligibility & symptom checker.

Suffering from Gastro Oesophageal Reflux Disease? Click here for the Diagnosis tool questionnaire.

Did you know? LINX surgery can really help to improve life on a daily basis. Click here to read testimonials.

Our Patron Fiona Wade
Watch our patron Fiona Wade - best known for playing Priya Sharma in Emmerdale - talk about her involvement with the OPA.

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The Oesophageal Patients Association - Cancer Charity

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Goodnight Acid Reflux, Hello Sleep! Bed Wedge special offer from the OPA The OPA has led the fight against oesophageal and gastric cancers for over 30 years. Their purpose is to support patients, families, carers and to raise awareness of these cancers and their prevention.

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Oesophageal cancer charity

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Today is a Mother's Day like no other. But while these exceptional circumstances occupy our thoughts and our plans, the Gardner...

For those of you (and there so many) who provide OCHRE with so much love and support, you know the challenges we face raising...

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Today is a Mother's Day like no other. But while these exceptional circumstances occupy our thoughts and our plans, the Gardner... For those of you (and there so many) who provide OCHRE with so much love and support, you know the challenges we face raising...

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In need of help or support?

If you need help, information or support contact our Support & Information Line now - we're here for you.

Get support

Sponsor A Researcher

Become a Research Sponsor now and put 100% of your money into what you care about - finding a cure for bone cancer! Sponsor a researcher exploring all forms of primary bone cancer or...

Fundraising events & challenges

There is wide range of fundraising events & challenges happening throughout the year. From running, cycling and swimming, to something more adventurous like sky diving.

Shop in our online store today

All proceeds from our online store help fuel our vital work. From cards to mugs to hoodies and much much more... Go shopping now.

The work of the Bone Cancer Research Trust is so valuable, especially to me. If I had not gone to get my lump checked after reading their website then there is a high chance that I wouldn't be here today
Lauren, who was diagnosed with Spindle Cell Sarcoma of the Bone aged 29.

Read patient stories

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Established in 1997, The June Hancock Mesothelioma Research Fund is the UK's first and largest independent mesothelioma charity. We have raised more than £1.5 million, the majority of which being spent on quality research into the diagnosis and treatment of mesothelioma and the care of people with the disease.

Our charity is named after June Hancock; she successfully sued the asbestos factory owners whose negligence claimed her life. Alan Bennett grew up near June in Armley and has paid tribute to her courage.
"Those of the calibre of June Hancock are heroes." - Alan Bennett

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Mesothelioma Charity | The June Hancock Mesothelioma Research Fund

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Established in 1997, The June Hancock Mesothelioma Research Fund is the UK's first and largest independent mesothelioma charity. We have raised more than £1.5 million, the majority of which being spent on quality research into the diagnosis and treatment of mesothelioma and the care of people with the disease.

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Male cancer (prostate, testicular, penile)

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Male cancer (prostate, testicular, penile)

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Pancreatic Cancer UK - For Everyone Affected by Pancreatic Cancer

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Support Line Freephone: 0808 801 0707. Dedicated UK pancreatic cancer charity. Specialist support. Investment in research. Driving awareness and change.

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Unknown primary

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When a person is diagnosed with cancer that has spread within the body (metastatic cancer) the primary site - the place in the body where the cancer started - is not always obvious. Finding the genetic origin of the cancer is important to define the best treatment. When the origin of the cancer is not identified with confidence, after initial tests, this is described as Cancer of Unknown Primary or CUP.

In the UK about 8,000 people are diagnosed with CUP each year - that is about 20 every day. CUP is the 11th most common cancer for women and the 14th most common for men [updated 2020]. The number of people diagnosed with CUP each year in the UK would fill about 20 jumbo jets; yet most people have never heard of CUP and find it hard to believe that in this scientific age the cause of the cancer, and its spread, can remain unknown.

For many of those diagnosed initially with an undefined or uncertain metastatic cancer the origin of the cancer will be found through further tests. When the primary site remains truly hidden and unknown the cancer can be contained with treatment but life expectancy is limited.

A cancer diagnosis is frightening for patient, family and friends. Not to know where this strange, invasive, disease has originated in the body is a double blow. CUP patients face unique psychological and social concerns. We exist to offer information and support to CUP patients, their families and friends; whilst raising awareness of this problem to stimulate action that will improve treatment.

Fundraising and awareness events are coming back to life as restrictions ease and the weather improves. We are very grateful to those taking-up these stretching challenges to support our work. Read more

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When a person is diagnosed with cancer that has spread within the body (metastatic cancer) the primary site - the place in the body where the cancer started - is not always obvious. Finding the genetic origin of the cancer is important to define the best treatment.

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We provide support and information for all types of sarcoma cancer; bone cancer, soft tissue cancer and GIST. Call our Support Line for help and advice 0808 801 0401.

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Bile duct (liver)

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Medical Disclaimer
All information on AMMF's website is for guidance only. It is not a substitute for professional medical care by a qualified doctor or other health care professional. Always check with your doctor if you have any concerns about your condition or treatment. AMMF is not responsible or liable, directly or indirectly, for any form of damages resulting from the use (or misuse) of information contained in or implied by the information on this site.

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AMMF - The UK's only Cholangiocarcinoma Charity

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Medical Disclaimer All information on AMMF's website is for guidance only. It is not a substitute for professional medical care by a qualified doctor or other health care professional. Always check with your doctor if you have any concerns about your condition or treatment.

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has online support groups

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Goodnight Acid Reflux, Hello Sleep! Bed Wedge special offer from the OPA

Welcome to the OPA Cancer Charity
The OPA has led the fight against oesophageal and gastric cancers for over 30 years. Their purpose is to support patients, families, carers and to raise awareness of these cancers and their prevention. Whatever stage you're at the OPA is here to help you.

With up to 20% of the population experiencing regular Reflux symptoms. Click here for the Eligibility & symptom checker.

Suffering from Gastro Oesophageal Reflux Disease? Click here for the Diagnosis tool questionnaire.

Did you know? LINX surgery can really help to improve life on a daily basis. Click here to read testimonials.

Our Patron Fiona Wade
Watch our patron Fiona Wade - best known for playing Priya Sharma in Emmerdale - talk about her involvement with the OPA.

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The Oesophageal Patients Association - Cancer Charity

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Goodnight Acid Reflux, Hello Sleep! Bed Wedge special offer from the OPA The OPA has led the fight against oesophageal and gastric cancers for over 30 years. Their purpose is to support patients, families, carers and to raise awareness of these cancers and their prevention.

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Patient focused info and support - information, clinical trials, APP to help you

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Committed to preventing deaths and improving quality

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Melanoma UK is a patient support and advocacy group. If you are a melanoma patient or carer and need help or support, please get in touch.

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We are the UK's leading liver health charity working to improve liver health for all and supporting those affected by liver disease or cancer

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Pancreatic support (patient, family, clinical trials, grants)

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About Us

We are a family-established fund, set up in memory of our beautiful wife and mother Elizabeth Coteman who sadly lost her battle with this dreadful disease in 2010. We are driven, as a family to help those sadly affected in whatever way we can.
Find out more about the Elizabeth Coteman Fund.

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We are a family-established fund, set up in memory of our beautiful wife and mother Elizabeth Coteman who sadly lost her battle with this dreadful disease in 2010. We are driven, as a family to help those sadly affected in whatever way we can. Find out more about the Elizabeth Coteman Fund.

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DID YOU KNOW YOUR GUTS ARE 25FT LONG?! SIGN UP FOR MORE FASCINATING FACTS, THE LATEST RESEARCH DEVELOPMENTS AND HOW YOU CAN SUPPORT FURTHER, INCLUDING FUNDRAISING ACTIVITIES AND MORE:
By submitting this form, you are consenting to Guts UK contacting you by email as detailed above. To make any changes to your preferences you can email us on info@gutscharity.org.uk or by calling us on 020 7486 0341. Your details are safe with us. Please read our Privacy Polic y for more details.

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Guts UK - committed to fighting all digestive diseases

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Guts UK's vision is a world where digestive disorders are better understood, better treated and everyone who lives with one gets the support they need.

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We’re the only UK charity looking after the nation’s lungs. Together, we’re making sure that one day everyone will breathe clean air with healthy lungs.

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We're here for you

Our team of professional neuroscience nurses can provide you with tailored information and specialist support at any stage of your journey. Call for free on 0808 808 1000 (Monday-Thursday, 9am-4pm) or email helpline@brainandspine.org.uk.
Find out more

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Our team of professional neuroscience nurses can provide you with tailored information and specialist support at any stage of your journey. Call for free on 0808 808 1000 (Monday-Thursday, 9am-4pm) or email helpline@brainandspine.org.uk. Find out more

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We are strong - Ileostomy & Internal Pouch Association

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We are strong - Ileostomy & Internal Pouch Association

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Skip to content

We are strong

Ileostomy and Internal Pouch Association (IA) is a registered charity supporting people living with an ileostomy or internal pouch, their families, friends and carers.

Ileostomy and Internal Pouch Association, known as IA, is a registered charity supporting people living with an ileostomy or internal pouch, their families, friends and carers.
Donate

How Can We Help?

I am a Patient

Diet

Relationships and Pregnancy

Will having a stoma make it difficult with my existing partner?

Understandably you may be concerned about having surgery whether or not you are in a relationship. Some are concerned how their partner will react when they see the bag. Will they be supportive? Will it lead to rejection? Will they still love or fancy me?

Your health must come first and if you need surgery please do not delay it because of relationship concerns. Beauty is more than skin deep and a bag can be seen as a sign of strength and courage.

If you are in a relationship and need surgery, discuss this with your partner so they understand what you are going through. Let them alleviate any concerns you may have and reassure you of their commitment. Often, if they have seen you experience ill health, they may find some comfort in knowing that a stoma is going to provide relief to your symptoms. Many partners are unsure of what to say or how to react for fear of upsetting you and may need to take a lead from you once they understand how you feel. It may also help them to tailor their support during and after surgery.

Read IA's leaflet for families and carers.

Can I have sex with a stoma?

Absolutely. Ordinarily a stoma itself doesn't mean that sex is not possible or should be any different from what you would normally enjoy. Depending upon your reason for surgery or any health condition, you may need to make some adjustments, but these can usually be worked through with your partner until a solution is found that works for both of you. It is important that you feel relaxed, wanted, valued and sexy during times of intimacy and having a stoma does not mean that that cannot be the norm.

Some men may experience erectile dysfunction, again depending on surgery, and if this lasts more than a few weeks once they feel ready after surgery, discuss this with your stoma care nurse, surgeon or GP. Sometimes internal bruising or swelling around nerves can lead to temporary issues with obtaining an erection.

Women may experience vaginal dryness or loss of sensitivity post-surgery and again you can discuss this with your stoma care nurse, surgeon or GP. These people are professionals and are there to help you however embarrassed or awkward you may feel.

Sometimes a little planning can help you relax before intimacy such as emptying/ changing your bag beforehand or wearing something that makes you feel good about yourself and covers your bag initially until you feel more confident.

Medical advice is that you should never introduce any object into your stoma unless it is under medical supervision.

I am Supporting Someone

Diet

What can you eat?

Diet is a very individual choice for everyone, with or without a stoma. IA strongly encourages anyone with a stoma to follow a healthy eating regime to ensure their body receives the right balance of nutrients and vitamins that it needs. This is especially important during their recovery period where the body would use more calories as part of the healing process. If someone has been experiencing chronic illness, such as inflammatory bowel disease, they may have been on a restrictive diet to help manage their condition. It may no longer be necessary for them to follow a restricted diet once they have undergone surgery.

They may be advised to follow a low fibre diet (less fibre/bulky fruit and vegetables) post-surgery for a few weeks to allow the bowel to settle and then gradually introduce more foods as time progresses.

Once the bowel has settled, encourage them to introduce new foods gradually so they can see how their body reacts and they can build their confidence with food. In the majority of cases everything will be fine and they can start to enjoy food again, especially if they have been restricted due to illness previously.

Some tips to help with digestion include chewing food well before swallowing, avoiding eating and drinking at the same time as it can introduce more air into the digestive tract and cooking raw vegetables well so they are slightly mushy when eaten.

Products and Supplies

Recovery

Relationships and Pregnancy

I am in a relationship with someone who is due to have an ileostomy, will sex still be possible?

Absolutely. Ordinarily a stoma itself doesn't mean that sex is not possible or should be any different from what you would normally enjoy. Depending upon their reason for surgery or any health condition, you may need to make some adjustments, but these can usually be worked through with your partner until a solution is found that works for both of you. It is important that you both feel relaxed, wanted, valued and sexy during times of intimacy and having a stoma does not mean that that cannot be the norm.

Some men may experience erectile dysfunction, again depending on surgery, and if this lasts more than a few weeks once they feel ready after surgery, encourage them to discuss this with their stoma care nurse, surgeon or GP. Sometimes internal bruising or swelling around nerves can lead to temporary issues with obtaining an erection.

Women may experience vaginal dryness or loss of sensitivity post surgery and again they can discuss this with their stoma care nurse, surgeon or GP. These people are professionals and are there to help however embarrassed or awkward someone may feel.

Sometimes a little planning can help you both relax before intimacy such as emptying/ changing the bag beforehand or wearing something that makes them feel good about themself and covers their bag initially until they feel more confident.

Medical advice is that you should never introduce any object into a stoma unless it is under medical supervision.

Can my wife/partner still conceive with a stoma?

Yes. It is completely possible to conceive and experience a healthy pregnancy if you have a stoma. As the baby grows and their abdomen changes shape, they may need to adjust their stoma bag to cater for stoma shape. Understandably they may feel concerned or anxious as to how the stoma will behave as they start to grow.

IA can always put your partner in touch with a trained volunteer who has been through pregnancy with a stoma if that helps. Please contact IA national office.

Travel

I am a Nurse or Healthcare Professional

"Living with a stoma doesn't have to be a barrier to enjoying life"

IA teamed up with My Bag and I to release a documentary about living with a stoma. The documentary, directed by Michael Durban, tackles social issues facing ostomates today such as dating, sex, mental wellbeing and day to day living.

The documentary follows ostomates Elliot and Hari who discuss individually, in an honest and open way, how life with a stoma raised fears around dating with a bag and the pre-conceptions that many new to surgery often develop.

We smash those fears and show people that living with a stoma doesn't have to be a barrier to enjoying life.

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We are strong - Ileostomy & Internal Pouch Association

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Skip to content Ileostomy and Internal Pouch Association (IA) is a registered charity supporting people living with an ileostomy or internal pouch, their families, friends and carers. Ileostomy and Internal Pouch Association, known as IA, is a registered charity supporting people living with an ileostomy or internal pouch, their families, friends and carers.

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Colostomy UK - A UK charity supporting people with a stoma

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Colostomy UK - A UK charity supporting people with a stoma

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Colostomy UK - A UK charity supporting people with a stoma

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We are Colostomy UK. A UK based charity. We're here if you have questions, need support or just want to talk to someone who lives with a stoma

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Providers of support services to the stoma and continence community

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Providers of support services to the stoma and continence community

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Amcare™ is a reliable prescription home delivery service that specialise in Stoma and Urology care. Find out more about our services here.

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The aims and objectives of the Urostomy Association are fairly widespread, covering many aspects of a person's life. We assist in whatever way we can, such as helping patients in the period both before and after the operation, with such help and support as may be necessary, assisting them to resume as full a life as possible, with every confidence.

Information Leaflets and Publications

We have a range of leaflets, publications journals and a DVD that can be requested (online or by post), click here for details.

Our Journals contain articles of both a medical and non-medical nature. For details of our Journal content, click here.

Home or Hospital Visiting

Selected members of the Urostomy Association, who are appropriately trained, are available to contact members on request. They can contact either in hospital or in the privacy of the member's home. Problems such as welfare, social, relationships and housing are examples of the subjects that can be discussed. We aim to allay any apprehension a patient may have and to give encouragement and moral support in helping the patient return to a normal mode of living after the operation. Click here for further details.

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The aims and objectives of the Urostomy Association are fairly widespread, covering many aspects of a person's life. We assist in whatever way we can, such as helping patients in the period both before and after the operation, with such help and support as may be necessary, assisting them to resume as full a life as possible, with every confidence.

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Supporting Your Bladder & Bowel Health | Bladder & Bowel Community

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At Bladder and Bowel Community, we aim to break the taboo of living with a bladder or bowel condition and offer support for those who do. Check us out today.

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Testicular Cancer | The Robin Cancer Trust | Germ Cell Cancer Charity. Focus on young people

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Testicular Cancer | The Robin Cancer Trust | Germ Cell Cancer Charity. Focus on young people

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Testicular Cancer | The Robin Cancer Trust | Germ Cell Cancer Charity

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We offer support services to individuals and families of those affected. Find out more. The Robin Cancer Trust's mission is to stop young adults dying from germ cell cancer. Advice & support. Your donation matters. Founded in 2012. Learn more. Get involved.

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Melanoma Focus - patient information and a patient helpline

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Melanoma Focus - patient information and a patient helpline

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Melanoma Focus commissions and funds innovative melanoma research, while providing support & information for patients, carers and healthcare professionals.

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Multiple endocrine neoplasma disorder (includes cancer)

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The aim of our website is to direct you as quickly as possible to our support services and to information you can trust on multiple endocrine neoplasia (MEN) types 1, 2, and 3, medullary thyroid cancer (MTC), familial medullary thyroid cancer (FMTC), adrenal gland tumours (phaeochromocytomas), parathyroid hyperplasia, paragangliomas, familial isolated pituitary adenoma (FIPA) and succinate dehydrogenase (SDH) disorders.

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Offers information, a worldwide registry, blogs and information and forums. Also signposts to other organisations and assists carers in finding the right support. Based in Surrey

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Being told "you have cancer" is a traumatic experience. Being told your cancer is so rare that doctors cannot tell you what to expect makes the diagnosis even more frightening. One such cancer is Epithelioid Haemangioendothelioma (EHE), an indiscriminate vascular sarcoma cancer that can occur at any age and is often aggressive in children and young adults. It is this cancer that we are focused on and determined to beat.

We have three core objectives. We are passionate about all three because we believe offering support to people living with EHE, while promoting research and understanding are the best way to combat this disease.

Our objectives are:

1. to support patients wherever they are in the world;

2. to promote, fund and direct research into EHE;

3. to act as advocates for greater awareness of, and care for, EHE.

In this section you will find further information about these objectives. If you decide you would like to help in our battle against EHE, please go to our HELP US section. We will be very grateful for whatever assistance you can provide.

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Being told "you have cancer" is a traumatic experience. Being told your cancer is so rare that doctors cannot tell you what to expect makes the diagnosis even more frightening. One such cancer is Epithelioid Haemangioendothelioma (EHE), an indiscriminate vascular sarcoma cancer that can occur at any age and is often aggressive in children and young adults.

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The Pituitary Foundation - UK national charity. Telephone: 0117 370 1333 Fax: 0117 933 0910 E-mail: enquiries@pituitary.org.uk Registered Charity No: 1058968, Registered Company No: 3253584. Head Office: 86 Colston Street, Bristol, BS1 5BB Copyright © 2018

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Pituitary Foundation home | The Pituitary Foundation

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The Pituitary Foundation - UK national charity. Telephone: 0117 370 1333 Fax: 0117 933 0910 E-mail: enquiries@pituitary.org.uk Registered Charity No: 1058968, Registered Company No: 3253584. Head Office: 86 Colston Street, Bristol, BS1 5BB Copyright © 2018

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Offers information, a worldwide registry, blogs and information and forums. Also signposts to other organisations and assists carers in finding the right support.

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Being told "you have cancer" is a traumatic experience. Being told your cancer is so rare that doctors cannot tell you what to expect makes the diagnosis even more frightening. One such cancer is Epithelioid Haemangioendothelioma (EHE), an indiscriminate vascular sarcoma cancer that can occur at any age and is often aggressive in children and young adults. It is this cancer that we are focused on and determined to beat.

We have three core objectives. We are passionate about all three because we believe offering support to people living with EHE, while promoting research and understanding are the best way to combat this disease.

Our objectives are:

1. to support patients wherever they are in the world;

2. to promote, fund and direct research into EHE;

3. to act as advocates for greater awareness of, and care for, EHE.

In this section you will find further information about these objectives. If you decide you would like to help in our battle against EHE, please go to our HELP US section. We will be very grateful for whatever assistance you can provide.

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Being told "you have cancer" is a traumatic experience. Being told your cancer is so rare that doctors cannot tell you what to expect makes the diagnosis even more frightening. One such cancer is Epithelioid Haemangioendothelioma (EHE), an indiscriminate vascular sarcoma cancer that can occur at any age and is often aggressive in children and young adults.

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GIST Cancer UK – Supporting GIST Cancer Patients & Funding GIST Cancer Research

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The support network for those affected by pseudomyxoma peritonei, appendix cancers and rare peritoneal malignancies

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Join the WM community.

Keep up to date with the latest news about the WM community and WMUK's work including national and regional events, research, news, fundraising and opportunities to get involved.

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Join the WM community. Keep up to date with the latest news about the WM community and WMUK's work including national and regional events, research, news, fundraising and opportunities to get involved.

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Living well with advanced bowel cancer

Join our online support event on Saturday 12 November, 10.30am-2pm. Delivered by health professionals, this event will provide information to help you feel more informed and better able to cope with advanced bowel cancer. It will cover the different types of surgery, the treatment pathway, how to get involved in clinical trials, and coping with the side effects of treatment.

Living well with a stoma

Join our online support event on Wednesday 26 October, 6.30-7.30pm. The free online event will be delivered by Melissa Holland and Wynne Jones. Melissa, who is Lead Stoma Clinical Nurse Specialist at Lewisham and Greenwich NHS trust, will provide an introduction to stomas and what to expect with both temporary and permanent stomas. Wynne, who volunteers for us in Wales, will be sharing his personal experience of living with a stoma.

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Join our online support event on Saturday 12 November, 10.30am-2pm. Delivered by health professionals, this event will provide information to help you feel more informed and better able to cope with advanced bowel cancer. It will cover the different types of surgery, the treatment pathway, how to get involved in clinical trials, and coping with the side effects of treatment.

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has support groups - also for younger people and carers

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We do. We are here to support all UK mesothelioma patients and their families. If you need information, support, help with benefits or compensation, or would like to speak to a nurse who is an expert in mesothelioma, we can help you.

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Mesothelioma UK | Supporting people with this asbestos cancer

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We do. We are here to support all UK mesothelioma patients and their families. If you need information, support, help with benefits or compensation, or would like to speak to a nurse who is an expert in mesothelioma, we can help you.

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We're a charity for those with rare salivary gland cancers such as Adenoid Cystic Carcinoma.

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Set up by specialists and survivors of head and neck cancer

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Welcome to the website for HANCUK - Head & Neck Cancer UK<p>Our website has information on Head & Neck Cancer, patient stories, information about our charity and our events, as well as links to some great support organisations around the UK.

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Young tongue cancer support (20s, 30s, 40s, 50s)

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Young tongue cancer support (20s, 30s, 40s, 50s)

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Although Tongue Cancer may be fairly common in the elderly population, getting diagnosed in your younger life makes you a bit of a rarity. As much as we all like being special, the lack of peers really becomes apparent when looking for support.

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For support if visual damage due to cancer treatment

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Changing Faces | Visible Difference & Disfigurement Charity

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We are here to help everyone in the UK who has a visible difference, a scar, mark or condition on their face or body that makes them look different.

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Rare form of bone cancer

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Read about Chordoma: a rare type of bone cancer | Chordoma UK

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Chordoma UK is a registered charity spreading awareness of chordoma and raising funds to support chordoma research in the UK. Together we can.

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National charity with telephone and online support

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Young Persons Patient & Caregivers Meeting Welcome to the Young Persons Patient and Caregivers group. When you feel like it, you are very welcome to join us at one of our regular meetings and be ready to offer support to others and be supported. Remember whatever stage of your treatment you will always be welcome.

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If you or someone you know has been affected by a brain tumour, you never have to feel alone. Information on helplines, support groups and other links

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Has a buddy system

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Throat Cancer Information and Support - Throat Cancer Foundation

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We are a charity who aim to raise awareness of cancers that affect the head, chest, mouth and neck, and to prevent future cases by funding research into prevention and cure and campaigning for universal HPV vaccination.

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Helpline We're here 24 hours a day: 0800 328 4257

Helpline We're here 24 hours a day: 0800 328 4257

Colostomy UK is a charity that SUPPORTS and EMPOWERS people living with a stoma. We're here if you have questions, need support or just want to talk to someone who lives with a stoma.

We also run projects to empower ostomates to return to sports, hobbies and other interests and give them the confidence to take up fresh challenges. We are advocates for ostomates' rights and their voice on the bigger issues. Our campaigns raise awareness and encourage organisations to make their facilities more inclusive. Supporting and enhancing ostomates wellbeing is at the core of everything we do.

We want hidden conditions to be understood and accepted by all, so that people can reach their potential.

We use these to guide everything that we do:

Support: We provide practical and emotional support and advice to people living with a stoma, their families, carers, and friends.

Empowerment: The aim of our day-to-day work, projects and campaigns, is to empower people with stomas to reach their potential.

Advocacy: We act as a voice for people with stomas, raising awareness of the issues that they face and engaging with organisations to bring about positive outcomes.

Read more about how we support people living with a stoma and our history in our This is Colostomy UK booklet.

Stay in touch

Facebook

Twitter

Subscribe to our e-newsletter

Download Tidings Magazine

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About us - Colostomy UK - Supporting and empowering you

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We are Colostomy UK. Supporting and empowering you. Here if you have questions, need support or just want to talk to someone who lives with a stoma.

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The Anal Cancer Foundation is dedicated to supporting patients and funding new treatments, exclusively for anal cancer.

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Surrey Ileostomy and internal pouch association

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Surrey Ileostomy and internal pouch association

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We are here to help those who have had or about to have surgery for an ileostomy or internal pouch and live in the Surrey area.

Surrey IA offers patients and their families: two support meetings a year, the IA journal and our local newsletter sent on a quarterly basis. We will gladly speak to someone if required. Our Spring AGM is held at East Horsley Village Hall and our Autumn Coffee Morning at Addlestone Community Centre.

Our president is Mr Jonathan Trickett MBBS DM FRCS(Eng) FRCS(Gen Surg).

You are very welcome to attend our meetings and full details can be seen on our local events page.

For further information, contact our secretary Cecilia Humphrey.

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Surrey IA - Ileostomy & Internal Pouch Association

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Skip to content We are here to help those who have had or about to have surgery for an ileostomy or internal pouch and live in the Surrey area. Surrey IA offers patients and their families: two support meetings a year, the IA journal and our local newsletter sent on a quarterly basis.

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Give a gift to Leukaemia Care and help us support leukaemia patients

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Our Acute Myeloid Leukaemia (AML)National Virtual Support Group is for anyone who has been diagnosed with AML in UK. Our meetings are a great way for you to meet someone who is going through or has been through the same journey as you.

Acute Myeloid Leukaemia (AML) National Support Group

20th September at 6pm - Hosted by Leukaemia Care Regional Coordinator, Shirley Emmerson

As it's Blood Cancer Awareness Month in September, we would like to invite you to wear (or bring) something spotty.
Register to attend
If you would like further information or if you would like to attend, please contact our Patient Services Team on freephone 08088 010 444 (Monday - Friday, 9am-5pm) or email support@leukaemiacare.org.uk

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AML National Support Group - Leukaemia Care

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Our Acute Myeloid Leukaemia (AML)National Virtual Support Group is for anyone who has been diagnosed with AML in UK. Our meetings are a great way for you to meet someone who is going through or has been through the same journey as you. Acute Myeloid Leukaemia (AML) National Support Group 20th September at 6pm -...

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If you have children in your family, you might be very worried about how they will cope with the AML.

Children will normally know that something is wrong, and their fear can be worse if they don't know what's happening.

It's important that children know they can ask questions and talk about the illness. You can help them by starting the conversation or asking them a question.

Telling children what to expect also helps them manage. For example, tell them if your hair will fall out, or tell them the plan if different people will be looking after them at times.

Your nurse or doctor can be a great source of advice on how you can support children through this. They might even be able to talk to children with you, explain things and answer their questions.

It's a good idea to tell their school what's happening too, so that teachers can keep an eye on how they are.

Of course it's still important for children to have fun, to do some of their normal activities, and have family time.

If one parent is in hospital, it's important that children can still do fun activities with their other parent or other family members or friends, even if it's just a movie night at home.

Try not to hold back your emotions in front of children all the time. Getting upset in front of them shows that they are allowed to get upset too, and it's not something they have to hide. When a parent is ill, it's always difficult for children, but they will remember that you were honest and open with them.

We often talk to people on our support line about telling people your diagnosis and dealing with different reactions. Contact our Support Service and we can help you prepare for talking to your children.

You can also talk to other parents and guardians about how they've supported children in this situation on our online community forum.

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Blood Cancer UK | Acute myeloid leukaemia (AML) practical support

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Support for you, your family and friends, and children when you have acute myeloid leukaemia (AML), including work, money, childcare and help at home.

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Anthony Nolan - A charity that connects blood cancer patients with generous strangers willing to donate stem cells.

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For someone with blood cancer or a blood disorder, a stem cell transplant from a matching donor could be their last chance of survival.

What do we do?

We're saving lives right now. Three lives a day, in fact.

Anthony Nolan is the charity that makes lifesaving connections between patients in need and incredible strangers ready to donate their stem cells.

We're giving families a future by:

Our Organisational Strategy

Find out more about our new ambitious strategy, unlocking new ways to treat every patient.

Together, we can save lives. Recruit more donors to the stem cell register and raise lifesaving funds.

#MatchForAMatch

Introducing the Anthony Nolan x Guild Esports #MatchForAMatch Cup. Catch up on all the action.

How one mother saved thousands of lives

Shirley Nolan's pioneering work has forever changed how people with blood cancer and blood disorders receive lifesaving treatment. All because she believed every child deserves a chance of life.

Did you know?

Every year, over 2,300 patients start their search for a matching stem donor, but we can't find the perfect match for them all. Your support can help change that.

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For someone with blood cancer or a blood disorder, a stem cell transplant from a matching donor could be their last chance of survival.

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Surrey & Hampshire Borders Kidney Cancer Support Group

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Surrey & Hampshire Borders Kidney Cancer Support Group

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association for multiple endocrine neoplasia disorders

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AMEND - Association for Multiple Endocrine Neoplasia Disorders

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AMEND - Association for Multiple Endocrine Neoplasia Disorders

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association for multiple endocrine neoplasia disorders

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AMEND - Association for Multiple Endocrine Neoplasia Disorders

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AMEND - Association for Multiple Endocrine Neoplasia Disorders

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Bladder & Bowel UK home page - Bladder & Bowel UK

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National helpline Confidential advice from our specialist team. Just can't wait card Get better access to toilets when out and about. information For guidance, advice and signposting to services. ProfessionaLs Training, symposiums, resources and more. Our mission We're working to improve awareness and find solutions to bladder and bowel problems across the nation.

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Worried about bowel cancer?

Have questions about how cope with treatment?

Wondering how to best help a spouse with bowel cancer?

An online support group for those affected by bowel cancer.

Over 2000 members from across the nation, all with their own stories and experiences.

To participate in this support group you need to be a member of Facebook. You can join by visiting this link:
https://www.facebook.com/groups/557304824914805

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An online support group for those affected by bowel cancer. Over 2000 members from across the nation, all with their own stories and experiences. To participate in this support group you need to be a member of Facebook. You can join by visiting this link: https://www.facebook.com/groups/557304824914805

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CCGs (Clinical Commissioning Groups) were established as part of the Health and Social Care Act in 2012. They are groups of general practices, which come together in each area to commission the best services for their patients and population.

ICS (Integrated Care Systems) are new partnerships between the organisations that meet health and care needs across an area, to coordinate services and to plan in a way that improves population health and reduces inequalities between different groups. ICS will replace Clinical Commissioning Groups (CCGs) by April 2022 and cover a wider geographic area than CCGs.

Devolved nations - health is primarily a devolved matter across the four nations which make up the UK. Among these variations are differing regional structures, Scotland and Wales have Health Boards, England have CCGs (currently being superseded by Integrated Care Systems) and Northern Ireland has Health and Social Care Trusts.

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CCGs (Clinical Commissioning Groups) were established as part of the Health and Social Care Act in 2012. They are groups of general practices, which come together in each area to commission the best services for their patients and population.

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Our mission is to support and empower Chronic Lymphocytic Leukaemia (CLL) patients, and Small Lymphocytic Leukaemia (SLL) patients, their families and supporters through education and access to reliable, relevant and current information.

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Welcome to CLL Support, a patient-led UK charity. Our mission is to support CLL and SLL patients, their families and supporters.

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The Anal Cancer Foundation is dedicated to supporting patients and funding new treatments, exclusively for anal cancer.

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Action for bladder cancer online support group

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Action for bladder cancer online support group

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Monday evening online support group 6-7.30pm

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Action Bladder Cancer UK (ABC UK) - Patient Events

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We are pleased to introduce our new online support group. The sessions will provide a welcoming space to learn, share experiences, and connect with others affected by bladder cancer. Each session will begin with a short 30-minute talk from guest speakers.