Community News - Macmillan Online Community

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
“When I am up at 'silly o'clock' I will try to remember this thread”

This week, the Awake and up all night discussion in the cancer chat forum reached a one-year milestone. For a whole year, people have found support from posting in the discussion thread and reading the ongoing conversations. Sleep problems may be caused by how you’re feeling emotionally, or as part of the side effects of cancer treatment. If you find it hard to get a good sleep, you’re not alone. The Online Community is here to support you 24/7. The Awake and up all night discussion thread was created with the aim of being a dedicated space for people to access peer support when experiencing sleep issues. “What a great idea for a thread. I often had trouble falling asleep, especially when I had been diagnosed but was waiting results, my brain was in worry overdrive.” Community member, Awake…

Megan- Online Community Team
“This place has been my sanity”: finding mental health support through cancer

“This place has been my sanity, a place where I feel understood and accepted.” Community member, Bereaved partners and spouses forum There are moments when cancer feels overwhelming. The worry can be constant, and it can feel like no one quite understands what you are going through. Living with cancer, or supporting someone who is, can bring uncertainty, isolation, and emotional strain. That’s why Mental Health Awareness Week is an important moment to pause and talk about it. In this blog, we share some conversations from the Online Community and highlight where you can find support. Finding support through shared experience In the Breast Cancer forum , one member reached out as they were struggling with their mental health. Other members replied with kindness and shared their own…

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
Do you need help managing stress

The focus of this month’s Wellbeing Wednesday is all about stress, as April is stress awareness month. As most of our members know, cancer can cause a range of emotions, including stress. Stress can impact mood, sleep, and overall wellbeing. Managing stress can be a challenge, so this blog features some coping strategies and lived experiences. Tips to help you manage stress Change your environment Something as simple as breathing in fresh air can help when stress gets out of control. When you feel under pressure, staying in the same environment for too long may make things worse. Before you know it, words seem to lose meaning and it’s hard to concentrate. Sometimes, it feels like your brain has suddenly stopped working, and this feeling can cause you to panic. Changing your scenery can…

Megan- Online Community Team
What you wish you had known – cancer and farming communities

As part of Macmillan’s work with farming and rural communities the Online Community team have been working with The Farming Communities Network (FCN). You can find more information about the partnership in Macmillan's blog here . Macmillan are committed to making cancer care fairer for everyone. This includes making sure that everyone has access to the right cancer support and encouraging people to seek help sooner. We want to make sure that the support available in our Online Community reaches people in farming and rural communities. To start the conversation, we have asked people from Farming Community Network what they wish they had known when they have been affected by cancer. Advice for farmers, from farmers living with cancer “For many people, speaking with other farmers can be…

Steph - Online Community Team
Lights, Camera, Action – the Online Community spotlighted in Macmillan Emmerdale TV campaign

At the end of March, we shared a teaser blog about filming a new TV spotlight message for the Online Community. We want to reach more people living with and affected by cancer so we can be there for everyone who needs us. Today, we’re delighted to be able to tell you more about this important project and how members of the Community team have been involved. We can now share that Macmillan have partnered with ITV's Emmerdale , the much-loved British ‘soap opera’ to help raise awareness of the realities of a cancer diagnosis and the vital support that Macmillan can offer. Steph starred in an advert to appear after Emmerdale to spotlight the support available from the Online Community. Emmerdale’s prostate cancer story Macmillan is proud to be partnering with much-loved soap Emmerdale…

Steph - Online Community Team
“AI is a really useful tool if used correctly.”

Advances in technology means Artificial Intelligence (AI) is being tried and tested to improve the way we live our lives. Some people use online AI tools to find information. From finding opening times for shops and looking for travel information when planning a trip. When it comes to cancer care, there is lots of information AI can provide, but do you know what information can be trusted? In this blog, we explore how Community members have used Artificial intelligence, and how AI is being used in cancer care. What is AI? Artificial intelligence (AI) is technology that helps computers perform a variety of tasks in ways that used to require human intelligence. From understanding language, analysing data, and even providing information. Artificial Intelligence (AI) is both part of the problem…

Megan- Online Community Team
How to access support this Bank Holiday weekend

This bank holiday weekend, you may be celebrating some of the religious events or just looking forward to the long weekend by spending time with your loved ones. For lots of you who use the Online Community for support, it may not be a weekend filled with joy as you are waiting for test results, coping with treatment side effects, or supporting a loved one. You don’t have to be alone this weekend if you’re struggling and there’s support available. Hopefully, the following information will help you access the support you need this weekend. Use the Online Community 24/7 Connect with others in the Cancer forums to talk about how you are coping, ask questions, and share personal experiences. The Online Community is open 24/7 so you’re really not alone. If you're struggling with anything…

Megan- Online Community Team
Lights! Camera! Action! Steph & Emma's Secret London Trip

Earlier in March, Steph and Emma from the Community team took part in a top-secret Macmillan TV project! I’m Steph and I’m excited to share some of our experience with you today. We travelled to London to film with a professional crew so that a message about the Online Community can appear on primetime television in the coming weeks. The filming was part of a larger project, designed to increase understanding and awareness of Macmillan services. We know just how important the Online Community can be to those who use it. Through our TV spotlight message, we hope to reach more people living with and affected by cancer so we can be be there for everyone who needs us. Intrigued? Whilst we can’t yet reveal full details of the project, we wanted to share a diary of our day in London and some…

Steph - Online Community Team
Cancer treatment - Living with a PICC line

Do you have questions about living with a PICC line ? The Online Community is a great place to hear from others about their experiences. You can also ask clinical questions to our Cancer Information Nurse Specialists . In this blog, we’re highlighting conversations from the Online Community about PICC lines, and how you can take part. Getting a PICC line fitted For many members, the idea of having a PICC line fitted can feel worrying at first. In the Breast cancer forum , some members shared that the procedure itself was much easier than they expected. “the insertion of the PICC was absolutely painless, in fact I did not even know the procedure had been done.” “I was terrified of having it inserted but it didn't hurt me either.” Another member described how the process felt straightforward…

Dylan - Online Community Team
March’s wellbeing Wednesday- Mindfulness, Music and Meditation

Waiting for test results and having treatment can cause issues with managing emotions and struggling to sleep. This blog includes some mind-body therapy information, alongside some wellbeing tips. These may be useful if you are having trouble sleeping or want to try some new coping strategies. Have you heard of mind-body therapies? Mind-body therapies are based on the belief that what we think and feel can affect how our bodies function. They have no effect on the cancer but may be used to help you feel less anxious, improve your mood and help you sleep. They may also help with symptoms such as pain or help you cope with side effects caused by cancer treatment. The mind-body therapies used by people with cancer in the UK include: relaxation techniques meditation mindfulness …

Megan- Online Community Team