Community News - Macmillan Online Community

Finding support for adenoid cystic carcinoma

This blog is a way of getting to know the Adenoid cystic carcinoma forum . We’re looking at the questions and personal experiences that have been shared on the Online Community. Adenoid cystic carcinoma also known as ACC, is known to be a rarer form of cancer in the salivary gland and can be found in other places of the head and neck too. If you’re looking for information or want to know how you can support other Community members with a rare cancer, stay and read this blog post. There are hundreds of different cancers, some are more common than others. About 1 in 5 people with cancer in the UK have a form of rare cancer and about 1 in 3 of those rare cancers are very rare types. A cancer may be referred to as ‘rare’ because it is a subtype of a more common cancer or because it is in an…

Megan- Online Community Team
Finding support with Bile Duct cancer (Cholangiocarcinoma)

In this Community News Blog, we'll be highlighting the support shared in the Community's bile duct cancer (Cholangiocarcinoma) forum and sharing some other ways you can find help. When you or your loved one has been diagnosed with bile duct cancer (Cholangiocarcinoma) , it's important you can find the right emotional support. The Online Community's bile duct cancer forum is an online cancer support group. It's open 24 hours a day, 7 days a week and you can find support from people who understand. Because they've been there themselves. You might be looking for tips to help you get the best from your cancer nurse and health care team or ideas around coping with side effects and improving quality of life. You might just need to talk. Whatever support you're looking for, the bile duct cancer…

Steph - Online Community Team
Here's to you, our Community members.

Our recent Community news blogs ‘ Being a partner and carer, how cancer affects relationships ’ and ‘ Let’s talk about cancer and sex ’ open up the discussion of how cancer can impact your personal relationships and sex life. There’s another important relationship that we’d like to feature in today’s blog. That relationship is between you, and the other Community members. The Community is here all hours of the day to listen, to care and to help. Everyday there’s so much kindness offered in the discussion threads and it’s warming to see you come together to be a friendly voice at the end of an emotional post. Being a reassuring friend to another member is a really kind thing to do. We’d like to take some time to highlight how much your kindness means to those you support. “There is no…

Megan- Online Community Team
Catching up with the ‘Anal cancer’ group

Here on the Online Community, we have lots of different groups where you can find support from someone with a similar diagnosis. If you or your loved one have been diagnosed with a form of anal cancer, the ‘Anal cancer’ group is a safe place to find support. In the Community News blog today, we’re going to feature some recent discussions and highlight how supportive our members are. Our members are here to reassure you that you’re not alone, and it’s ok to talk about what you’re going through. “Ask, Ask Ask away, there's so many people on here that will be able to help and offer support. Also, don't think anything is too much information or too gross to talk about it. It's all been asked before.” Community member, ‘Anal cancer’ group Some members recently welcomed a new member to the…

Eliza -Online Community Team
Oesophageal Cancer Awareness and Fear

February is oesophageal cancer awareness month and we're taking some time today to highlight some of our recent content relevant to people affected by an oesophageal cancer diagnosis, treatment or side effects. We also want to talk about fear. We know that many people affected by cancer face fears around cancer treatment options and how the side effects can impact quality of life. We are here as an open and frank space where you can express your fears. They may be fears for your own cancer or that of a family member or loved one. You might be a carer and have fears about the impact of cancer treatment on someone else. Whatever your fears, our online support groups are here for you to let it all out. Discussions about fear Our members often express fear in relation to Oesophageal cancer and…

Tom C - Online Community team
Being a partner and a carer: how cancer can affect relationships

A loved one being diagnosed with cancer can have just as big an emotional and practical impact as a personal diagnosis. This can have a greater impact if you also become a carer. Many members here on the Community team who are supporting a partner might want to do everything they can to help. But that doesn’t mean that you don’t need support too. Here in the Community News blog, we often say every diagnosis and experience can be different. That’s true for relationships too. For some people, a partner having a cancer diagnosis might not impact your relationship at all. For others, a cancer diagnosis can cause additional worries and difficulties in a relationship. You aren’t alone in what you’re going through, no matter how you feel. A cancer diagnosis can affect relationships in many ways…

Eliza -Online Community Team
Stoma series: tips from others living with a stoma

In the first part of the Stoma series , there was lots of reassurance offered in the different discussions and information of how to find further support. In this blog, we’re highlighting some of the practical tips that our members have shared to manage their stoma. It’s natural to have questions about stoma care and the Online Community has supportive spaces to get guidance from others who are also living with a stoma. “It’s very early days for you and it’s great you’ve found this group. There’s so many experts in managing a stoma here and I have found great tips. My Stoma nurses were amazing and really got me sorted with the right products and advice.” Community member, Bowel (colon and rectal cancer forum), ‘ rectal cancer’ discussion thread “So pleased I’ve found this group. I had…

Megan- Online Community Team
January 2022 - Finding peer support from the Online Community

Now we've nearly reached the end of January 2022, we're looking back on the last few weeks and sharing some of the amazing emotional support you've been offering each other. So far in January, we've seen 1,568 new members join the Community looking for peer support. Although we're always sorry that circumstances have brought you here, we wish you all a warm welcome to the site. If you're new to the Community, it's a collection of online support groups, divided into separate forums. You can find forums dedicated to your specific cancer diagnosis or cancer treatment. We also have forums for anyone supporting loved ones or family members with cancer. If you're looking for more general chat and support, you can also find forums where you can talk about your pets, spirituality or even share…

Steph - Online Community Team
Protecting your mental health on the Online Community

The Online Community is a big source of support for lots of members. It can be a comfort to read that other members are going through a similar experience to you. However, it’s important to look after yourself online. Sometimes we may need different types of support depending on how we’re feeling. Sometimes it can be difficult to read posts where other people are talking about their experiences, even if those experiences are similar to yours. We want you to feel you can be honest and use the Online Community in the best way for you. We’re here today to talk about how you can look after your wellbeing online. We’re also going to talk about ways you can be mindful of other members’ mental wellbeing. “Everyone can be affected by a cancer diagnosis in so many ways.” Ask a nurse How can you…

Eliza -Online Community Team
New Beginnings

As we find ourselves somehow in 2022, people affected by cancer have been through an awful lot in the last few years. The coronavirus pandemic continues to change peoples’ plans and of course has impacted the health and freedom of many. After such difficult times throughout the last few years , finding fresh energy for the new year and hope for the future is arguably harder than ever. "I am trying to put it all into perspective but it’s hard." - Community member, Neuroendocrine cancer forum "I’m not sure if things ever return to the normal we knew before we were diagnosed but I guess we learn to live with the new normal and hopefully as distance opens up between past treatment and scans we get a new perspective and it isn’t as all consuming as it once was. Fingers crossed that’s the case."…

Tom C - Online Community team
Stoma series- Reassurance from the Community

Have you been told you may need a stoma after treatment or surgery? Are you already living with a stoma? This blog is a collection of supportive and shared experiences from members who have had, or currently live with a stoma. If you’re looking for some reassurance, you may just find it here. Even if you’re not looking for reassurance about living with a stoma, you’ll still find lots of warm peer support. It can be comforting to know there’s a whole Community of people who can understand what you’re facing. We see everyday how much support our members give each other by being there to listen, and talk about each other’s experiences. Being told that you need a colostomy, ileostomy urostomy or a laryngectomy stoma, can cause a range of feelings. You may have been given different options by…

Megan- Online Community Team
Let's talk about cancer and hair loss

A side effect of some cancer treatments like chemotherapy, radiotherapy and targeted therapies might cause hair loss. Members often come to the Community looking for support or advice with hair and scalp issues. In this Community News Blog, we’ll be highlighting conversations in the Community around hair loss and hair re-growth. Your hair might feel like an important part of your appearance and identity. Often, when your hair looks good, you feel good. For some, losing their hair is one of the hardest parts of having treatment. For others, it is not as bad as they expected. If you’re worried about hair loss, or have questions around hair care, scalp cooling, wigs, hats, turbans and scarves the Community is here to help. You can find out what to expect from people who’ve been through it…

Steph - Online Community Team