Community News - Macmillan Online Community

How a cancer diagnosis is communicated – your experiences with online test results

The following blog is posted on behalf of John N - Macmillan . John is one of our Service Knowledge Specialists working to deliver best practice within the Macmillan Nurses team. In today’s blog, John is looking at the rise in NHS hospitals delivering cancer test results online, as well as the impact new services like this can have on patients. At the end, he’ll be asking for you to share your experiences with any of the topics mentioned in this blog. How much information do you want? Finding out that you have cancer can be a shock, even if the cancer diagnosis was strongly suspected. Some people try to learn as much as possible about their diagnosis. Being informed can help when talking to medical teams or telling family and friends. It can also help people feel involved in their care…

Matthew - Online Community Team
Introducing Community badges!

Introducing our new Community badges! We are really excited to be able to share with you today a new feature on the online Community, our Community badges. Our Community badges are not only a new way for our members to quickly identify the Community team, and our Community Champions, but also a way to celebrate you and the amazing support you provide each and every day on the Community. We have three badges which we are going to be launching, and we wanted to tell you more about each of these badges below. Staff badge This badge is for Macmillan’s Community team. The Community team are Macmillan staff that are dedicated to running the Community. The Community team are available 7 days a week and are here to support you. This badge will only be given to members of Macmillan’s Community…

Former Member
How do you prepare to hear the news? Getting the results with member Wee Me

Whether you have been personally diagnosed or you are supporting a loved one, waiting for and getting results can be difficult. It can be hard to know how you might feel if you receive news you didn’t want or didn’t expect. You might know Community member and Macmillan volunteer Wee Me from our “Carers only” group or “Glioblastoma multiforme brain tumour” group . You might also know her from all her blogs here on Community News. Wee Me’s husband was diagnosed with a Glioblastoma brain tumour in September 2020. Following on from her blog in March 2022 for Brain Cancer Awareness Month, Wee Me is here today to talk about hearing the news. She shares her experience of going to appointments, looking at scans and hearing her husband’s results. “Point to the picture of the blue pencil under the…

Eliza -Online Community Team
‘I was astounded to find that many others were feeling as I was’ – The problem of cancer’s long term effects - by Cordelia

Today on the Community News Blog we are really pleased to have Cordelia as one of our first guest bloggers of 2020. Cordelia is a counselling Psychologist who has written about the long-term effects of cancer and she has put together a piece for us today about her own experiences after her bilateral breast cancer diagnosis in 2004. Why not take a moment to read through Cordelia’s story? ‘I wonder how many others can relate to my story below? I was diagnosed twice with bilateral breast cancer in 2004 but misdiagnosed first time round, so two diagnoses that same year. The cancer was a Stage 2 treatable cancer, though the first one was strongly HER 2, so very aggressive, but the tumours were very small, with no spread to lymph nodes or organs. I had two surgeries, two radiotherapies, each…

Former Member
Music speaks – how music can help us get through difficult days

Community member and Macmillan volunteer Wee Me ’s husband was diagnosed with a Glioblastoma brain tumour in September 2020. You may know her from the “Carers only” group or “Glioblastoma multiforme brain tumour” group . Wee Me has shared lots of blogs here on the Community News. She has shared her experiences and support, from how to cope with hearing news to how to cope as a carer. Today, Wee Me is here to talk about something which is very important to her as a source of comfort and support – music. To quote Hans Christian Andersen, “where words fail, music speaks.” Music is all around us and to some it might just be background noise in a shop or “hold” music on a phone call, but it’s there whether you consciously recognise it or not. It touches us all and gets into your subconscious…

Eliza -Online Community Team
"...it was teatime and I hadn't thought about my 'alien'..." - Wellbeing Wednesdays: September

It’s September, so time to share our favourite ‘Wellbeing Wednesday’ tips for the past month. What a month it’s been for, so I’ve gone ahead and thrown in few extra ones – this month there’s a focus on ‘distractions’. “I watch my dogs happy and content in the moment. Be like them, forget the past, you can't change it. Live for the moment, enjoy all you see and hear. Look forward to the future. Be brave, ask for help, and love all around you…” “What I'm trying to say is when you are at your lowest and you think things are never ending, things will get better...There is light at the end of the tunnel so don't give up!” "Yes, having a garden or an allotment is a lovely way of spending our free time. Being active outdoor, growing vegetables and fruit, picking our own fresh crop and making…

Former Member
The recurring fear of recurrence

"Whatever your prognosis, whatever your hopes, whatever your personality, the second that you know that you have cancer your life changes irrevocably." It seems to be a common experience that once cancer treatment finishes, the anxieties and fears around recurrence become heightened. We regularly see conversations about recurrence, or worries of recurrence, on the community and how much this can impact your wellbeing and mental health. It’s natural to worry about cancer coming back, and it’s something that our Community members support each other with here on the site. "The fear of recurrence is troubling me, I realise whole heartedly I’m so lucky and I’m trying to be positive but I don’t want to ignore the impact of the treatment had on my well-being." Community member "I feel worse…

Ellen - Macmillan
Meet Amy, Part 2: Introducing Stoic Philosophy

In a recent Community News Blog we met our new guest blogger Amy, who struggled with her emotions after being diagnosed with ovarian cancer. Amy has since used this experience to write a blog to help others manage their mental health through cancer and is keen to share some of the resources which helped her. If you missed the first part of the blog, ‘Meet Amy – Finding a way to move towards acceptance and peace’, you can find it by clicking here. Amy told us about a time when she felt that cancer brought a lot of uncomfortable emotions to the surface. She says, “I was tempting to stuff them back down and pretend I was OK. Maybe I did this a little bit on the surface. Sometimes you don’t feel comfortable sharing your darkest thoughts. Maybe you feel a need to protect your loved ones. But I…

Steph - Online Community Team
National Love Your Pets Day - Sharing the comfort of pets with a Community invitation and interactive game

National Love Your Pet Day is observed on February 20th each year. It's a day to set aside some extra time to show your pets how much they mean to you and to reflect on the positive impact they have on your life. To celebrate all pets associated with the Online Community, we invite members to share a photo or story of their pet on the Community this week. You can share in your existing forums or pop over to our 'Animals are family too' forum and join in the conversations. We have also prepared a quick 'this or that' interactive game for some pet-related fun. Would you prefer to be curled up cosily like a cat, or bound round a field with other canine friends? Make your votes to see how you compare to the rest of the Community. An invitation to our 'Animals are family too' forum If you…

Steph - Online Community Team
'I am struck not only by the quality of the information but by the depth of care that people who post show. It’s humanity at its best.' – A word from our CEO Lynda

We are thrilled to announce that kicking off 2020’s guest blogs, we have our very own Chief Executive of Macmillan Cancer Support, Lynda. Lynda is a huge advocate of the Community and the amazing support you all provide every day. The beginning of a New Year can bring many thoughts and feelings, some very difficult and some more hopeful but it can be a really good time to look forward over the coming days, weeks or even months and really take time to focus on what is most important to you. Whether that is spending more time with friends and family, taking time out to make sure you are giving yourself a proper rest, or maybe booking that appointment you have been putting off. Lynda’s piece today focuses on the importance of seeking medical guidance even when it can feel extremely daunting. Sometimes…

Former Member
Managing cancer and side effects at work: Elvina’s story

Do you feel you have the right support at work? Lots of people affected by cancer, like Elvina, don’t always feel they have the support they need from their employer, manager, or from the sickness policies in place at work. Lots of people may feel worried about work when they are affected by cancer. Here in the Online Community, we’re featuring 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. As July’s story of the month, Elvina is sharing her experiences of working while affected by cancer and what employers need to do better. “How am I going to get through this work shift today?” Elvina’s video, titled “You Look Well,” is about her experiences at work following her cancer…

Eliza -Online Community Team
Pride - Supporting LGBT+ people affected by cancer

The month of June has been celebrated as Pride month for the LGBT+ community for decades. For the first time in recent memory, there will be no Pride marches across the UK this year. We didn’t want to let that stop us celebrating this important time, alongside recognising how much there is still to do to support equality. Macmillan and the Online Community are here for everyone affected by cancer, no matter how you identify or who you love. If you’re wondering why we’re talking about Pride, check out the Macmillan cancer information team’s blog post here . An estimated 1.2 million people in the UK identify as lesbian, gay or bisexual, while other estimates suggest this could be as high as 3.6 million. Macmillan’s Emerging Picture report acknowledges that accurate figures on sexuality and…

Eliza -Online Community Team