Community News - Macmillan Online Community

Toxic Positivity - Part Two

Last year, we published a blog on “toxic positivity”, including guidance on navigating conversations about cancer. The blog resonated with numerous Community members, prompting some to share their experiences dealing with toxic positivity in the comments. We wanted to share some of those insightful comments with you here, as well as some helpful links if you have been struggling with how to navigate conversations with family and friends. If you haven’t come across the concept of “toxic positivity” before, you can read the original blog by clicking here. Dealing with toxic positivity “Wow, I’m so happy to read this is a thing. I try really hard to be positive and occasionally feel angry or upset. I can’t believe the number of times I’ve been told I’ll be okay because I’m so positive, or…

Dylan - Online Community Team
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
When good intentions hurt: Exploring Toxic positivity and conversations about cancer

While positive affirmations can be uplifting, is it possible to have too much of a good thing? Is ‘always positive’ always helpful? In this blog, we’ll be exploring a concept known as ‘toxic positivity’, and how it affects those facing cancer. We'll also offer guidance on how to engage in conversations about cancer. What is toxic positivity? When talking about difficult or upsetting emotions, a natural reaction might be to try and counter those feelings with overly positive responses. Although the intention is to provide comfort, positivity can become toxic when it dismisses valid struggles and negative emotions. Emotions are complex, so we need to embrace the full spectrum of feelings, both positive and negative feelings. Toxic positivity can be emotionally draining. The pressure to…

Dylan - Online Community Team
What were the moments of support that mattered to you?

Cancer is one of the toughest things someone can go through. When cancer shows up, silence often follows. This is something Community members have called Cancer ghosting, and we explore this experience more in the Cancer ghosting blog . People living with cancer tell us they don't want to be a burden but still need emotional and practical support from their loved ones. Sometimes friends, family and colleagues can struggle to find the right words to say and not know how to best support you. What supportive moments made a difference to you? We are asking you what your family and friends have done to show they care and be supportive. Was it stopping by with warm meals? Meeting up with them once a week for a cuppa and a chat about life beyond cancer? Care packages of things to help…

Megan- Online Community Team
What's next for the Online Community?

On the 29 th July this year, we upgraded our Community platform. Since then, we have been working hard on fixing technical issues and bugs, and continuing to improve the site. Today, we’re sharing some information on what’s next on our ‘to do’ list, and talking about some of the improvements we’re focusing on next. On the Community, we’ve been through a lot of change over the last few months. In July, we upgraded our Community platform. This upgrade has meant the Community cancer forum is now much more stable, and gives us the opportunity to improve the site based on what our members need. The upgrade brought with it some technical issues and glitches that we have worked hard on getting resolved. With the majority of these fixes out of the way, we’re now looking to make some improvements…

Ellen - Macmillan
What to pack for hospital?

Electronic devices , water bottle , lip balm , reading materials ... Just some of the items that might appear on helpful forum replies when someone asks, 'What should I put in my hospital bag ?' Lots of people find it can help to feel prepared when you're going for tests or going through cancer treatment . You might be planning your own hospital stay or helping a loved one with an appointment What would you put on your packing list if you were to share it today? It could be what to put in your bag when you go for chemotherapy treatment or what clothing to take into hospital when you have surgery. In this Community News Blog, we're sharing top tips from across the Community and inviting you to share your own. What should I take to hospital? Your healthcare team will usually provide…

Steph - Online Community Team
Have you experienced cancer ghosting?

Some Community members have been discussing the term ‘Cancer Ghosting’ in the Online Community forums. It is a social term that those living with cancer use to describe family and friends not being there to support them once they have told them about their cancer. “Have any of you experienced cancer Ghosting? It’s where friends and relatives suddenly disappear when you announce that you have cancer. It’s a recognised syndrome apparently- Google it. I am afraid I have experienced it. It can have a big impact.” Community member, Cancer ghosting discussion, Bladder cancer forum “Since my diagnosis last year my friends have all disappeared. Messages have stopped, and I'm left with my husband and dog. My husband is my rock, but I miss the distraction my friends provided. It makes the journey…

Megan- Online Community Team
If I could go back to the day of my cancer diagnosis

The moment of a cancer diagnosis can feel like stepping into uncharted territory, bombarded with unfamiliar terms and overwhelming emotions. As we approached the end of 2023, we posed some questions to the Online Community, inviting members to reflect on the day of their diagnosis. “If you could go back and speak to yourself at the time of diagnosis: What words of comfort, advice or encouragement would you offer? What lessons have you learnt that you wish you knew from the start? What wisdom or guidance would have made a difference?” Community members replied with some profound insights and reflections. Here are snippets from some of the members’ responses. Reflections from the Online Community “When you are first diagnosed with cancer you are plunged into a whole…

Dylan - Online Community Team
Look out for our improvements!

It’s been a little while since we last posted about our plans for improving the site. In today’s news blog, we’re telling you about five improvements which will be coming to the site within the next few weeks. If you have any questions, please feel free to comment in the comments section below and one of the team will get back to you. ‘Latest’ hyperlink in forums First up, we have the ‘Latest’ link within discussion threads. When you go to one of your groups, and you look at the discussions list, you should see the option to select ‘Latest’. See the screenshot below: At the moment, when you select ‘Latest’, you are taken to the first post within the thread and not the latest post. We’re changing this so that when you select ‘Latest’ you’ll be automatically taken to the most recent post…

Steph - Online Community Team
The Changing Faces of Cancer- Scalp cooling, Hair loss and Regrowth.

Jane was diagnosed with a rare and aggressive type of endometrial cancer in March 2022. She underwent surgery, chemotherapy, and external beam radiotherapy. During chemotherapy, she decided to scalp cool to try and prevent hair loss. During her Community Champion role, she often comes across people who need support with hair loss and have questions about it. Sometimes pictures can speak louder than words so she has put together a visual timeline to share her experience. Scalp Cooling- The positives… But will I lose my hair? Was one of the first questions I asked when told I needed chemotherapy. Hair is not just about vanity, it is part of our identity and although I knew I was really ill, I did not want to look ill. I wanted where I could, to keep any struggles private while I was dealing…

Megan- Online Community Team
"How are you?" - Counselling support for people living with cancer

“How are you?” We all know this question can sometimes be a tricky one to answer. We also know it’s important to ask others how they are feeling, but don’t always take the time to ask ourselves how we are doing. Often, we brush off the question with a quick ‘Yes fine thanks, how’re you?’ but maybe it’s time to take a moment to really think about how you are feeling and whether you have the right emotional support in place for you. When you have been affected by cancer, answering this question can sometimes feel even harder. Receiving a cancer diagnosis can impact your mental health and emotional wellbeing. In today’s Community news blog, we are talking about what support is available to help you explore the answer to that important question… ‘How are you?’ Exploring how you are feeling…

Former Member
Help us shape the Online Community

Here on Macmillan's Community, we want to make sure our online space grows and develops in line with what our members want and need. That's why we're reaching out to you, our valued Community, to share your thoughts and ideas. Below we have a few polls asking for your vote on how you'd like to see our digital space develop and grow. We would love for as many members as possible to take this opportunity to actively contribute to the future of our Community. Your thoughts and ideas hold immense value which is why we want to hear from you. By sharing your vote with us, you're playing a vital role in helping us shape the Community and helping others get the most from the site. More ideas? Why not share them in the comments section below. We'd love to hear from you!

Ellen - Macmillan