The whirlwind of a breast cancer diagnosis can leave you breathless. And it can leave you feeling alone and scared. But you are not alone. Far from it in fact. There is an amazing support community out there waiting for you. Your tribe is out there waiting for you to get in touch.
Some women diagnosed with breast cancer retreat into themselves and can’t bear the idea of reading about other women’s cancer journeys, let alone talking to anyone else who has breast cancer.
For some women, the first thing they want to do with their diagnosis is go out and find someone else in the same position and share share share.
Most of us fall in the middle of this spectrum, perhaps veering towards one end or the other. But wherever you stand between these two poles, there is an outlet for you.
There are forums, support groups and chat groups where anyone with any type of breast cancer diagnosis is welcome. There are some for certain age groups, there are some for certain types of breast cancer, there are some for certain ethnic backgrounds, some for men, some for certain age groups and some where everyone is welcome. There really is something for everyone.
Some advice if you plan on visiting some of these online forums or support groups:
1. Don’t compare your diagnosis with anyone else’s diagnosis because we are all different.
2. Don’t compare your treatment regime with anyone else’s regime because these are tailored to our individual situations and our regimes will be different, even if it seems that we have the same diagnosis.
3. The way in which other people react to chemo drugs may be different to how you react to the same drugs.
4. Everyone reacts differently to their diagnosis and treatment. As times goes on and we move along the cancer path some of us adjust to life on this path, whilst many of us find it a continual struggle. It is therefore perfectly normal for someone to express their despair on one of the forums or online chat rooms, or even at a support group. Despair can come across in many forms: sadness, anger, fear, complaints, tears. So when faced with anger or moaning or grumbling (online or in person) if you are feeling strong enough then perhaps consider giving love and support.
5. Someone always has breast cancer “horror story” to tell: but you don’t need to listen to it.
There are loads of local support groups that you can get involved with.
1. Ask your hospital if they have a support group service.
2. Ask your breast care nurse for recommendations.
3. Find out about local breast care charities because they often hold coffee mornings or host support groups.
4. Find out about local hospices because they also have coffee mornings, support groups, drop-ins for breast cancer patients. Don’t be put off by the word ‘hospice’. My local hospice is a god-send for breast cancer patients and they are all about helping people who are living with cancer.
4. Macmillan can help you find a support group near you.
5. There are a number of Maggies Centres around the UK which provide support and advice for all types of cancer.
6. There are also a number of other national cancer support organisations dotted around the country (for example, Breast Cancer Haven, Penny Brohn and Shine Cancer Support). Take a look at their websites to see if they have a centre near you.
7. In the Useful Links/Resources section there is a list of regional help centres and charities for breast cancer patients. You could contact one of these organisations near you about how they can help you.
There are plenty of these. The best thing to do is make yourself a cuppa, get comfy and spend a few hours exploring the discussions going on. Here are a few:
1. Breast Cancer Now have lots of categories like “Going through treatment” and “Genes and breast cancer”. Within each category are a number of different boards which are the sub-categories. And then within each sub-category are ‘threads’ which are the conversations. Sound complicated? Luckily there is a category on “welcome and how to use the forum”. A bonus about these forums is that they are monitored by Breast Cancer Care moderators who ensure that everyone complies with the forum guidelines.
2. Macmillan. This isn’t organised quite as well as the Breast Cancer Now forum and it is more difficult to browse around. It is more helpful if you know the topic you are looking for discussions about so you can search for that topic.
There are a number of breast cancer support groups on Facebook which are closed groups and you need to apply to be given membership to the group. Don’t be put off by this; it is just to protect everyone’s privacy and ensure that all members are genuine breast cancer patients. These are absolutely great for getting advice from others in your position, and getting support from a community of other ladies who know exactly what your are going through.
1. The Younger Breast Cancer Network – this link takes you to their undeveloped website but there is a facebook link that can take you to the group on facebook. Joining criteria is that you are under 45 and live in the UK. This is fantastic. I cannot praise this network enough. It puts you in touch with other women going through breast cancer treatment providing a lovely space for everyone to message their worries, concerns and generally supporting each other. There are sub groups for geographical areas, moving on after treatment and different types of breast cancer. The network also has some super useful information sheets about breast cancer.
2. Simply the Breast (Gemma’s Support Group) – a lovely facebook group run by the wonderful Gemma, where anyone with, or affected by, breast can join in the chat.
3. Live Better With: Coping with Cancer Side Effects – a great group for anyone with any type of cancer. A place to go with queries, questions, concerns and where you can get advice, encouragement and support.
4. True Cancer Bodies A place to chat and meet patients/survivors/thrivers of all cancers.
5. BRiC Centre – Building Resilience in Breast Cancer Centre They have a support group on Facebook for women going through all stages of breast cancer. They provide all sorts of up to date information about treatment, articles and blogs. They also hold regular discussion groups.
Twitter is also an excellent resource for you if you wish to get in touch with others in your position. There are many breast cancer survivors, those going through treatment for primary breast cancer and ladies with secondary breast cancer who you can follow. There is also a regular breast cancer twitter chat which takes place every Tuesday evening #bccww. One of the founders of this group explains in her blog how and why she and a group of women set it up. It is still going strong.
There are loads of us on Instagram – I am amazed by the number of wonderful, inspiring women who are going through breast cancer or have recently been through it, sharing their stories on Instagram. And everyone is always up for a chat, providing support and encouragement and generally being there.
There are some support groups which focus themselves on Instagram:
London Breasties Part of the wider US based non profit Breasties, the London arm of this organisation is run by Lucy and Tamara. The aim of the group is to give all previvors/survivors and thrivers a place to meet friends/chat and share all things cancer related. Get in touch with them via their Instagram page. They will have a Facebook page up and running soon.
And finally I must also mention an amazing App called Booby Trapp which enables you to connect with other young breast cancer patients in your area or around the world. You can filter member profiles by diagnosis, age and location to connect with other women like you. The App also has features to help with keeping appointments, recording side effects etc, and a helpful glossary of breast cancer terminology.
(Information up to date as at 22 November 2019. Disclaimer: Please note that I am not a doctor, psychologist, surgeon, or other medical professional, I am just someone who has traveled the breast cancer road. Nothing in this website is intended to be taken as professional, medical or definitive advice. It merely contains tips and advice based on my experience together with information which I have researched from some excellent websites and books. ALWAYS talk to your medical team about concerns and questions relating to your cancer treatment plan. And please note that I cannot accept responsibility for the content of the websites to which I provide links.)