Community News - Macmillan Online Community

"Not enough people of colour are going onto that register"- Wilfred's Acute Myeloid Leukaemia diagnosis and treatment story

Wilfred was born in Jamaica and is part of the Windrush generation. He came to the UK around the 1960s and settled in Birmingham. Wilfred was diagnosed with acute myeloid leukaemia and shares his reflections post-diagnosis and treatment, alongside the challenges a black person needing a stem cell transplant can face. Wilfred also talks about the need for emotional support when living with cancer and how Macmillan can help. The Online Community is a space to talk about how you are coping and access emotional support in our cancer forums. Join our Emotional support forum or post in our other cancer forums if you need additional support today. The Community is a safe and supportive space for people to share their personal experiences with cancer so if you are affected by Acute myeloid leukaemia…

Megan- 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
The importance of our pets during our cancer journey- Jane's story

Jane, also known as jane2511 , was diagnosed with Stage 1b endometrial carcinoma sarcoma – a rare type of womb cancer in April 2022. She underwent surgery, chemotherapy and external beam radiotherapy, completing active treatment 6 months later. She became a Community Champion for Macmillan in March 2023 to support others who are facing similar experiences. When having treatment, Jane tells us how her beloved cats supported her at home. If you are an animal lover, you may have worries about looking after them whilst you are not home. You are not alone as Jane tells us her story. In March 2022 I became unwell and had to go to hospital. One of my first concerns, when the A+E doctor suggested admitting me overnight, was I can’t. I have cats at home. Not 1, not 2 but 3. For most people without…

Megan- Online Community Team
Crafting, mindfulness and coping with cancer: Helen’s story

Helen was diagnosed with secondary breast cancer in March 2021. Like many people who receive a cancer diagnosis, Helen felt a mixture of emotions including worry, panic and stress. She had lots of questions about cancer and what might happen in the future. To help herself cope with how she was feeling, Helen turned to crafting. A lifelong knitter and crocheter, Helen talks in her video about how crafting helps to distract and calm her mind. She talks about how crafting and creativity have been incredibly important throughout her experience with cancer. Crafting has also helped Helen to create her legacy for her family and loved ones. Here on the Online Community, lots of members talk about how art, crafting, creative writing and hobbies can help with how you’re feeling. Members in our Express…

Eliza - Macmillan
Finding comfort in Community: Catching up with our Emotional support forum

After receiving a cancer diagnosis, you may experience different emotions. These can be difficult to cope with. The same feelings may also be felt by partners, family members, and friends. Sharing your feelings can help you and others in your situation. In this blog, we will highlight some of the profound discussions that have taken place within our Emotional support forum . Our emotional support forum offers a safe space for connection, empathy, and shared experience. Embracing each emotion Many Community members have expressed feeling angry at some point after being diagnosed. Anger can be directed at oneself, a loved one, or even a medical team member. One member reached out for support in our forum. They wrote about their struggle with anger and asked for advice. “I’ve been…

Dylan - Online Community Team
Living with incurable cancer – Online Community support

Macmillan’s Online Community can support you when you have incurable cancer. Only those who have an incurable diagnosis can truly understand how you are feeling, so it can be helpful to connect with others in a similar situation. If you have an incurable cancer diagnosis, you may find it helpful to join the Living with incurable cancer forum as an additional source of support. The following will introduce you to the group and highlight the emotional support this forum can offer. We will feature discussions and posts from people already posting in this group alongside other sources of support. Why join the Living with incurable cancer forum? It's good to connect with people who have a similar cancer type in the other cancer forums so you can support each other through similar treatments…

Megan- Online Community Team
Online Community downtime: Thursday 20th July 2023 - 7am to 9.30am

There is some planned maintenance taking place on Macmillan’s website on Thursday 20th July, from 7am-9.30am. 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 am - 9.30am On Thursday 20th August 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 you will not be able to create an account, log into the site or post, however 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…

Megan- Online Community Team
Being in Nature: Mind, Mood & Moors

When the weather takes a turn for the better, some folks like to go outdoors for a stroll, some like to sit under a tree’s welcoming shade, and some may just enjoy a nice lemonade in the back garden. Whatever your vice may be, we take a look at how some of the Community members in the Breast Cancer forum use their love of nature to help try and put the mind at ease. It can be a difficult trying to go about daily life after receiving a diagnosis. Finding something, like a hobby or activity, can be vital when it comes to clearing your mind and put you at ease when it comes to coping with your diagnosis. In this blog, we will take a focus on how some members of the Community use nature to try and help them find peace. Please note that some of the links may include wonderful pictures captured…

Syed - Macmillan
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
Feeling guilty when you rest - relaxation, hobbies and self-care during cancer fatigue

Living with a cancer diagnosis can be exhausting. Managing the side effects of cancer treatment. Looking after your emotional wellbeing. Plus the demands of daily life are still there, needing your attention. It’s no wonder that even dealing with simple tasks can start to feel like an incredible strain. Extreme fatigue and persistent tiredness can really impact your quality of life. Just as severe fatigue is a common symptom of cancer, it can also be a common side-effect of cancer treatment. Life with cancer-related fatigue can feel like you're running a race with no clear finish line. Thoughts of needing to pace yourself are common. Can I spare the energy to do that task today? Will those feelings of fatigue set in the next day? It can be difficult to know when you should take a break…

Matthew - Online Community Team
Local Cancer Community Meet-ups - support and socialising in Glasgow

If you're in the Glasgow area and you fancy chatting face-to-face with other people affected by cancer, this could be a great opportunity to make some new friends. Macmillan is trialling a new kind of event this summer called 'Cancer Community Meet-ups'. These events intend to build supportive communities of people local to the area they are hosted in. Not to be confused with our Online Community, we'll refer to these events as 'Local Cancer Community Meet-ups' in this blog post. If you would like to discuss attending this event with other members of the Online Community, please don't forget that our Community Guidelines still apply. We ask members not to share contact details or make specific meeting plans on the public forums. The Private Messaging system is a better way to discuss plans…

Matthew - Online Community Team
Living with cancer and coping with stigmas- Kiwi and Indravadan's story

Kiwi and his father, Indravadan, talk in their mother tongue, Gujarati, about Kiwi's chronic myeloid leukaemia diagnosis, how the family responded, and some of the stigmas still prominent in their community. This video is part of Macmillan’s mother tongue project. (4 minutes and 9 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. Kiwi: Within our Community, depression and mental health are not spoken about, leading to a lack of understanding…

Megan- Online Community Team