Community News - Macmillan Online Community

Finding support for stoma reversal and LARS on the Online Community

The Ileostomy, colostomy and stoma support group on the Online Community is a place where members can support one another through surgery, managing a stoma , diet tips and keeping comfortable. Following surgery for bowel cancer , colorectal cancers , other cancers and pre-cancerous conditions, some members have a permanent stoma , others may have been offered a temporary stoma . When you have a temporary stoma, you might be offered a stoma reversal. Members recently asked if we could provide a dedicated space for conversations around stoma reversal and Low Anterior Resection Syndrome (LARS). We’ve responded by adding a new forum to the Ileostomy, colostomy and stoma support group called the Stoma reversal and Low Anterior Resection Syndrome (LARS) forum. The new forum which you can find…

Steph - Online Community Team
Kath’s story: living with a stoma and building confidence.

You may have read Kath’s recent blog ‘ Living with bowel cancer and a stoma ’, where she shares some of the physical and emotional challenges that she has faced. In this blog Kath is talking about how living with a stoma has affected her self- confidence. Living with a stoma can be a big change for some people and these changes can take some time adjust to. By sharing her experiences, Kath hopes to help others and to let you know there are ways to build your confidence and adapt your life. Although there have been some difficult moments, Kath wants to make people aware that you can still lead an active and fulfilling life when living with a stoma. I've been a stoma user since 2011 and hardly think about it - ten years down the line. Going back ten years things were very different. For…

Megan- Online Community Team
"Macmillan’s community becomes my lifeline as in my own community, cancer is still a taboo" -Renita's story

Renita, known as RMD in the Online Community, was diagnosed with invasive multifocal ductal and lobular breast cancer at 48. In this blog, she shares her diagnosis story, the challenges of treatment, and how the Macmillan Online Community became a source of support, hope and reassurance when she needed it most. Cancer was not on my radar until my mum found a lump. In May 2025, during my morning call to my family in India, my sister says, “Now don’t panic but…” “What’s happened?” I cry in full-blown panic, frantically googling flights to India. My mum takes over, calm and unruffled. She is the matriarch of the family, our strength and rock. As usual, just hearing her voice makes me feel better, but what she says has me hyperventilating again. She has found a lump in her breast. It needs…

Megan- Online Community Team
Let's talk about treatment: sinus cancer and surgery.

Dan (pictured above), known on the site as Defiantlydisfigured, was diagnosed with squamous cell carcinoma in the ethmoid sinus in 2012, which is a very rare type of cancer. He underwent surgery, radiotherapy and chemotherapy. Dan found support from sharing his story online in blog posts and on social media, and he continues to raise awareness for facial cancers. I was 34 and told that I had a large tumour growing inside my head and it was not long before it would invade the space where apparently my brain was. In order to make sure I had a chance to live, they would have to take out my eye to make sure they got it all. Well as shitty as it sounds, it was an easy decision: "whatever it takes,” I said. The wheels moved swiftly after that and before I knew it, I was nervously twiddling…

Steph - Online Community Team
Talking about grief

Photo by David Today we are back with our 5th instalment of our Bereavement series. The aim of this series is to try to shine a light on important issues facing those who have lost a loved one to cancer, and remind everyone that the Community is a safe space where we welcome any conversations about grief and bereavement. But why is it important to talk about grief and how we are coping after the death of a loved one? And do we all need to be more open about what we go through when we are grieving? Today we will explore this further and look at the different ways of accessing support. Why is it hard to talk? Talking about grief can be really difficult, it can be hard for both those who are grieving, and those who are supporting them. For those who are grieving, you may worry that…

Former Member
Notice: improvements release postponed

This morning, Wednesday 5 th May, we had planned to move forward with our first batch of improvements to the Community. As many of you may have noticed, the site was down for longer than we had expected. Unfortunately, we ran into some problems when we released the changes into the site. We did not want to introduce any issues into the Community, and therefore we made the decision to roll back the improvements. We are really sorry for any inconvenience the downtime may have caused, and we’d like to thank you for your continued patience. We’re working really hard to get this fixed, so we can release these improvements as soon as possible. If anyone has any questions or concerns, please do not hesitate to get in touch with us by commenting below or by emailing us on community@macmillan…

Ellen - Macmillan
Has your speech or voice changed after a cancer diagnosis or cancer treatment?

November is Mouth Cancer Action Month , an awareness month organised by the Oral Health Foundation. In today’s blog around mouth cancer, we’re talking about speech and voice changes. Speech changes can depend on where your cancer is, and the type of treatment you have. Speech and voice changes don’t only affect people with mouth cancer. You may also experience changes if you have laryngeal cancer or oesophageal cancer, amongst other diagnoses. For some people, speech changes are temporary, and their speech or voice returns to normal after their treatment. For others, some treatments can cause permanent changes to the way they speak. If you’ve been affected by speech or voice changes in any way, the Online Community is here for you. Talking about what you are going through can be an important…

Eliza -Online Community Team
Hysterectomy support from the Macmillan Online Community forums

A hysterectomy can be hard to deal with physically and emotionally. Our forum members can help you cope through shared hysterectomy experiences. Some members have been talking about total hysterectomy (sometimes known as a simple hysterectomy) where the surgeon removes the womb and cervix. Others are discussing radical hysterectomy where the surgeon also removes the upper part of the vagina, pelvic lymph nodes and tissue surrounding the womb and cervix. Whatever your experience, it can be really helpful to be able to talk to real people who have been through a hysterectomy. How our forum members support each other with hysterectomy When you are facing a hysterectomy and you’re not sure what to expect, you can chat things through here on the Community. Prior to surgery or hospital stay…

Steph - Online Community Team
'Please don't' - by Cordelia

Cordelia, our guest blogger from earlier this week, is back today with a poem she wrote about coping with people’s comments around her breast cancer diagnosis. Want to catch up on Cordelia’s previous blog? Click here to read her story. Please don’t… Please don’t tell me how I should feel Or what I should think about having breast cancer; How I should be ‘over it’ by now; How I should be more positive; How I should be grateful that I’m alive. And please don’t say, ‘You’re over-reacting to your situation, It’s only you who feels like this’ or ‘It’s time you got on with your life.’ How can you know? You have never been in my situation. And please don’t ask me what I have contributed to my cancer Or tell me how brave I’ve been. There was no choice is all. It was just…

Ellen - Macmillan
New to the Online Community - some help in getting started

Are you new to the Online Community and looking for help with getting started? We're here to help. How to get started on the Online Community We have produced a short video, showing you step by step how to get started. This video shows you step by step how to join a group/forum and post a message. Written instructions for getting started If you prefer written instructions, you can find them here: If you haven’t already joined the forum click in the joining banner at the bottom, then click ok. To add a new message in the forum, click on the ‘create new post’ button. On a mobile, this looks like a plus sign at the top right of your screen. In some groups, you can choose from different forums. If you’re new, you might want to choose ‘new here say hello…

Steph - Online Community Team
Where do you find support online?

Hi everyone, It's Eliza from the Community team. Finding the right support for you when you're going through an experience with cancer is really important. We're interested to know whether you use other support groups outside the Online Community. You'll see the poll below this post, where you can vote to let us know. Making the Online Community better for you is at the heart of everything we do. If you'd like to talk to us to offer feedback about the Online Community, please remember you can email the Community team at any time at community@macmillan.org.uk .

Eliza -Online Community Team
Looking back at the Online Community in 2022

We’re coming to the end of 2022 and as the new year approaches, we wanted to take some time to look back at what’s happened on the Online Community this year. This blog is a short overview of some Community highlights. The Online Community team would firstly like to thank all our members for the kindness and support that you have shown each other this year. There have been over 75,802 posts in our Community groups which shows the tremendous amount of peer support that can be found here. We’ve had lots of new members join our Community in 2022 and the power of peer support grows every day in our Community groups. Connecting with others who share similar experiences can provide comfort and reassurance. There's spaces for loved ones and those living with cancer to find support 24/7. “Coming…

Megan- Online Community Team