Community News - Macmillan Online Community

Catching up with the Bladder cancer forum- May 2023

With May being Bladder cancer awareness month, we thought we would catch up with our Bladder cancer form to see what questions have been asked recently, and what experiences have been shared. If you are affected by bladder cancer, this blog is a snapshot of the support you can find by joining the bladder cancer forum. Contents Diagnosis and waiting for treatment Needing reassurance and emotional support Coping with the aftereffects of treatment Practical support Supporting someone with Bladder cancer Diagnosis and waiting for treatment Reading about the lived experiences of others, and what their treatment decisions are can provide lots of reassurance and comfort. The power of peer support can help you to feel less alone when processing a cancer diagnosis. One member…

Megan- Online Community Team
Online Community downtime: Wednesday 31st May 2023- 7.30am to 9am

There is some planned maintenance taking place on Macmillan’s website on Wednesday 31st May, from 7.30am-9am. So that this essential maintenance can take place, the Online Community will experience some downtime. This means that members will not be able to log in, or join the Online Community, between 7.30am - 9am on Wednesday 31st May 2023. We know how important the Community is as a source of support for our members, so we always do our best to ensure the site is not unavailable for any longer than necessary. Please know that while the site is down, although you will not be able to create an account, log into the site or post, you will still be able to view the Community and read posts and discussions for support. We understand that this may impact members who rely on the Online Community…

Su - Macmillan
Myeloma and a stem cell transplant: Mary’s story

A cancer diagnosis can be a shock. Thinking about treatment may feel overwhelming. If you’re feeling nervous or worried, you’re not alone. Mary was diagnosed with myeloma in 2020, which is a type of blood cancer. This can also be known as bone marrow cancer. Mary has shared her experience of diagnosis, having a stem cell transplant and chemotherapy through her video. Mary’s story talks about cancer experiences many people might go through, even if you or your loved one has a different diagnosis. Mary shares what receiving her diagnosis was like. Mary also talks about hair loss and adjusting to being back at home after a hospital stay. She also shares her experience of finding support around her mental wellbeing. If you’ve been diagnosed with myeloma, there’s lots of support available on the…

Eliza -Online Community Team
Anxiety and cancer - support from Macmillan's Online Community

Members of the Online Community often talk about experiencing anxiety. This might be following a cancer diagnosis or whilst waiting for a scan or results. Anxiety levels can also increase both before and after cancer treatment. This blog will focus on what the Online Community has shared about managing anxiety and the symptoms of anxiety. We’ll highlight some helpful tips and tools shared by our community members and Macmillan experts who are here to help in our Ask an Expert section . The Online Community is a safe and supportive space where you can be open about your emotions. "Anxiety feels like it’s been my biggest demon, it’s particularly bad when I’m due an appointment with the consultant, even though she’s lovely, my mind wanders, and I talk myself into it being bad news…

Dylan - Online Community Team
Macmillan’s mother tongue project- Della’s story

Introduction Della talks in her mother tongue, Yorùbá, about her diagnosis, how her family responded and some of the stigmas still prominent in her and her family's community. This video is part of Macmillan’s mother tongue project. (4 minutes and 22 seconds). We hope to feature different lived experiences here on the Online Community to represent different ethnic cultures and communities so that nobody feels they are facing cancer alone. Please see an English transcript written below. There are also English subtitles available when watching the video. For additional support information in other languages, scroll to the end of this blog page. Transcript Della : They were wondering where I got this illness from, because “black people don’t get this illness”. It’s seen as a…

Megan- Online Community Team
Cancer and gardens - enjoy garden and gardening chat with members of the Online Community

Image credit: tvman - part of my vegetable garden Members of the Community have been talking a lot about gardens and gardening. If you’re struggling with cancer, or the effects of cancer treatment , you might benefit from gentle activity around the garden, or simply just sitting in nature. It’s often said that the physical activity of gardening is beneficial to both the body and mind. Whether you have your own garden, you’re in a gardening group or have access to a community garden , you might find there are health benefits to getting outside. Let’s have a look at some of the conversations about gardens and gardening from across the Online Community. Community member tvman regularly shares the benefits of gardening through regular updates about his fruit and vegetable growing in the…

Steph - Online Community Team
Going back to work during or after cancer: Diana’s story

Lots of members on the Online Community must navigate when and if to go back to work. If you’re not sure what to do about work, you’re not alone. Every month, we’re featuring someone from Macmillan’s Digital Storytelling project. The Digital Storytelling Project is a way for people to share their experiences as a video. Today, we’re featuring Diana. Diana talks about her experiences going back to work. Diana is sharing her story today to help others who are considering when to go back to work. Diana decided to go back to work after cancer treatment because she was feeling lonely. Work can look different for everyone affected by cancer. Some people may want to go back to work as soon as they can. Some people may need a longer recovery. It’s important to make sure you feel you have the right…

Eliza -Online Community Team
Working and living with cancer- Lindsay’s story

T oday, one of our Community Champions Lindsay ( Irishgirl16 ) is sharing her experience of working when living with cancer and going through treatment. Lindsay was diagnosed with breast cancer in February 2021, aged 51. Active treatment took almost 12 months involving chemotherapy, surgery, and radiotherapy. Ongoing preventative treatment will continue for many years. Lindsay lives in Devon, though her job is based in Germany so she and her husband, and the dog, travel frequently between the two countries. She has a grown-up daughter who lives outside London. When my oncologist told me she’d sign me off work for 6 months at the start of my chemo, I was filled with an immediate sense of despair. Not only is my career important to me, but I’m a busy person and the thought of filling endless…

Megan- Online Community Team
Coping with the news you have incurable cancer

Finding out you have an incurable diagnosis can bring lots of different emotions. You may not feel your friends and family members can understand what you’re going through. You may not understand why you feel the way you feel. Jenna is one of our Information and Support Advisors on Macmillan’s Support Line . She is here to talk you through ways to understand and cope with your emotions and mental health. If you’ve been diagnosed with incurable cancer, it may help to talk. Please remember you can access support in our “Living with incurable cancer” group . This blog post is a bit longer than our other blog posts here on Community News. This is just to help you access all the information and support you may need in one place. Please feel you can read this at your own pace. To help you find…

Eliza -Online Community Team
Help to Overcome Problems Effectively. Accessing the HOPE course through Macmillan – Wellspring’s story.

It’s normal to feel lots of different emotions when you finish cancer treatment. Macmillan are here to help. The Online Community is a place where you can share experiences and peer support with people going through the same thing. In addition to the Community, you might be looking for further support so you can feel more like yourself again. In today’s Community News Blog, our Online Community member Wellspring shares their experience of HOPE. HOPE, which stands for ‘ Help to Overcome Problems Effectively ’, is a course developed by Coventry University and Macmillan Cancer Support to help people who have had or have cancer to get on with their lives. We will now hand over to Wellspring to tell you all about their experience. “It was winter 2019. 12 months experiencing 6 rounds of FOLFOX…

Steph - Online Community Team
Peer support on the Online Community – the year so far

As we move into Spring it’s a good time to reflect on where we’ve been and where we are going. Sharing some of the amazing emotional support and kindness you have been offering to others. We’ll also look at some of the changes we’ve made. The Online Community team would like to thank you for making the Community what it is, offering kindness and support to each other. We currently have over 68,000 members and over 7,100 have join this year so far. You have posted over 45,000 messages of hope, support and encouragement already this year. Your words offer so much when others may be feeling lonely or scared. People find a lot of care and support when going through a cancer treatment. Family members and friends can also find a lot of support when helping their loved ones through cancer. Here…

Su - Macmillan
Finding human connections and support: Rubina’s story

Receiving a cancer diagnosis can feel lonely and isolating. But you don’t have to feel alone. There’s lots of support available for you, although you may not know at first where to find it. We’re here to help here on the Online Community. Every month, we share a person from Macmillan’s Digital Storytelling project here on the Online Community. Today, we’re featuring Rubina. Rubina was diagnosed with bowel cancer. It took a long time for Rubina to receive a diagnosis, she felt her primary care did not fully investigate her concerns. By the time Rubina was diagnosed, her cancer was already advanced. Rubina felt very disappointed, angry and frustrated as there was no compassion or empathy from her medical professionals when she needed it the most. She couldn’t share her feelings as she didn…

Eliza -Online Community Team