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
Telling children about cancer

Alongside receiving a cancer diagnosis, one of the toughest moments a person can face is having to tell their children that they have cancer. Finding the words can be difficult, especially when trying to process the information yourself. It’s challenging but a conversation many will have to have, especially if mum or dad could potentially be struggling physically. In this blog, we take a look around the Community and see how other members have approached this sensitive subject. How do you approach this subject? Is there only one way to approach this? You can ask a professional such as a doctor or nurse, but maybe they haven’t experienced what other members have. The things they wish they had done differently whilst telling their children as well as the things that worked for them. The most…

Syed - Macmillan
Confused about your diagnosis or treatment options?

Lots of members come to the Online Community with questions. It can be really difficult to cope with feeling that you don’t understand your own cancer diagnosis, treatment options, or information you’ve been given. It’s important to make sure you can access the explanations you may need. It’s also important that you are asking questions in the right place. Remember that you’re not alone, and that there’s lots of support available to you. “I'm just very confused that all this has happened so fast” Online Community member, ‘Acute myeloid leukaemia’ group Receiving a new diagnosis can be overwhelming. You might have received information you don’t understand, or medical terms which sound confusing. Not understanding your diagnosis may cause more worry and uncertainty. You might feel frustrated…

Eliza -Online Community Team
Are you feeling lonely?

There’s a lot of conversations about loneliness recently as it’s been a discussion topic for mental health awareness week. Feeling lonely can affect your mental and health and w e often hear members of the Online Community talk about how lonely they feel. We’re talking about loneliness in this blog so why not stay and read more if you’re looking for some company, or to find others who are also feeling the same as you. The past couple of years during the coronavirus pandemic, most people have experienced loneliness as social interaction was stopped and we were told to stay at home to keep safe. For a lot of people, feelings of isolation and loneliness doesn’t just come from being physically alone, but something that can is often felt when you’re affected by cancer. “The last 12 months…

Megan- Online Community Team
Story of the Month: Jennifer

Have you ever felt misunderstood during your experience with cancer? Here in the Online Community, we’re excited to launch a new series working with Macmillan’s Digital Storytelling Project, where people affected by cancer have created their own videos to talk about their experiences. We’re starting with Jennifer as our first story of the month for May 2022, also known on the Online Community as . Jennifer has created a video to share her experience of receiving a cancer diagnosis as an autistic person. Her video is called ‘Take a moment’. She talks about her feelings of being misunderstood by medical professionals and the assumptions made about her. Jennifer also shares how her experiences have changed her perspective on both herself and how she wants to move through the world. “I am…

Eliza -Online Community Team
“I’m fine”: how do you really cope as a carer?

Community member and Macmillan volunteer Wee Me has been through a lot since her husband was diagnosed with a brain tumour in August 2020. Along the way, she has learned a lot about her own resilience and looking after her wellbeing. You might have read Wee Me’s story in her recent guest blog, “Caring for a partner with a brain tumour.” Today, Wee Me is talking about the coping strategies that work for her and how it’s ok to cope in a way that feels right for you. One of the frequently asked questions or themes running through the ‘Carers only’ group and many other groups within the Macmillan Online Community is “How do you cope?” How many times have you been asked that and replied along the lines of “I just get on with it. I’m fine.” Now I can’t begin to imagine the emotional journey…

Eliza -Online Community Team
Feeling Under Pressure

People affected by cancer have been under pressure, more than ever, in the last few years. As the NHS was stretched in dealing with the Coronavirus pandemic, treatment delays and necessary changes in the way healthcare works, have left many feeling scared and worried. "It’s a scary thing at the start as it’s the waiting which is one of the hardest to cope with. My treatment was during the covid lifting of restrictions and the impact on the hospitals meant scans were delayed and also results. I think maybe because it takes what feels like so long between each step, it causes my inner negative voice to rise to the surface." - Online Community member, Anal cancer forum. The additional challenges brought by COVID 19 are shared and talked about on our Community. "The reason that I am posting…

Tom C - Macmillan
Supporting men with breast cancer in the Online Community

In our October 2021 Community News blog for breast cancer awareness month we linked to some Macmillan information on male breast cancer with the hope it could help people find that information when they need it. A breast cancer diagnosis in men is rare, so it can feel particularly isolating when going through diagnosis, treatment and beyond. Recently, a new member of the Community posted in our breast cancer group , looking for other men going through similar experiences . In this blog, we will be highlighting the conversation that followed with the intention of helping others find the group and join in. There is lots of support offered to everyone in the breast cancer support groups across our Online Community . “ Hi, I have recently joined this female dominated cancer world I have had…

Steph - Online Community Team
Finding cancer support over the Easter bank holiday weekend

As we head into the UK bank holiday weekend, some of us are celebrating Easter with family and friends. Some of us are almost halfway through the month of Ramadan, a time for reflection and spending time with loved ones. For some of us, it might also be a worrying or sad time. You might be waiting for results, coping with the side effects of treatment, supporting a loved one with cancer or struggling with a bereavement. We wanted to reach out through our Community News blog to highlight the support available to you over this weekend and beyond. “ My family is coming over Easter. I like that very much but now I need to prepare food and stuff. A bit stressful and my energy level is still low.” - Community member, living with cancer outside of the UK forum. Cancer support from the Online…

Steph - Online Community Team
Showing empathy to everyone

Have you ever been told you look great, but on the inside when you’re not feeling your best? Has someone you know assumed how you may be feeling, just because you’re living with cancer? If you have, then you’re not alone. This blog is highlighting some of the experiences members have shared when it comes to coping with the assumptions of others, and how being a part of Macmillan’s Online Community has helped. "I have since told friends that I am struggling, one friend said still struggling! some are very supportive, some do not know what to say which is why I find this on line chat so helpful, everyone on here is going through the same thing." Community member, Prostate cancer forum “I’m glad you have people you can trust to tell. I’ve found many don’t know how to react or say things…

Megan- Online Community Team
Community Round-Up Blog - March 2022

March sparks the season of change. As nature starts to repair after winter and spring starts to arrive (although I wish spring would get a move on with the temperature change!) March has also been a time of change for us here on the Community as we have welcomed some fresh new features to the site. We also welcomed 1,764 new Community members last month. So get ready to read all about the what’s been going on on the Community for the marvellous month of March. We kick-started March by releasing some new changes on the Community. We took your feedback to the drawing board and created a new look for the platform, you can find out more about these changes on the Look out for our improvements blog. It takes a deep dive into all the changes that have been made this past month. Here is some of…

Syed - Macmillan
Cancer and Anxiety

Both bowel and testicular cancer awareness months happen in April. Whilst cancer diagnoses can vary hugely, the feelings and emotional experiences can sometimes be similar. In today’s Community News Blog, we are talking about cancer and anxiety. Whether it be anxiety around physical symptoms, concerns about upcoming cancer treatment, or even anxiety you can’t quite ‘label’ - we are here to talk about it all. Where to Start "I just seem to have no bounce. No urgency in myself. I’ve lost something within." - Online Community member. A cancer experience can impact your confidence and of course bring a lot of stress. Cancer treatment, and it’s side effects, can impact mental health. Whether you have a diagnosed anxiety disorder or not, we know from our members how hard it can be to ‘find a new…

Tom C - Macmillan