Community News - Macmillan Online Community

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- 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 - Macmillan
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 - Macmillan
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
“The biggest shock of my life." Stage 4 metastatic breast cancer to the bones: Karin’s story.

During her first routine mammogram in July 2019, Karin, aged 51, received the shocking news that she had stage 4 metastatic breast cancer to the bones. She lives happily in Stroud with her partner, 2 rescue dogs and foster pups. In this blog, she shares her story with us, giving us a window into her life, over 4 years after receiving the shocking news. Receiving the news That was the biggest shock of my life, being diagnosed with stage 4 breast cancer with mets to my bones from my first routine mammogram. “Treatable, not curable”, they said. Me, terminal cancer! Under Palliative Care. What!? Once I’d picked myself up from that one and started treatment, I’ve luckily had no avid disease (NAD) for 4 years. The COVID pandemic added to the cancer bubble mayhem, but I somehow navigated my way…

Dylan - Macmillan
Coping with anticipatory grief when you're supporting someone living with cancer

The feeling of grief and loss before a loved one’s passing is something that is often discussed here on the Community. If you’re feeling this way at the moment, or have done in the past, you’re not alone. This blog is exploring anticipatory grief and hopefully you’ll find some comfort and ways of processing anticipatory grief after reading the following. What is anticipatory grief? Anticipatory grief can be experienced when you’re aware of an impending loss. It’s the feeling like you're coping with bereavement before a loved one dies. The feelings associated with grief, such as sadness, guilt, anger and denial, don't only surface after a loved one has died. It’s not uncommon to start the grieving process before a loved one’s passing. “Someone wrote on one of the chats that when someone…

Megan- Macmillan
Community upgrade: an update for members

On 29 th July, we launched an upgrade of our Community site. The changes we have made are to ensure that the Community is working on a much more stable platform so that our users encounter less technical issues and that we can grow and develop the Community in a safe and well-supported way. We are not where we had hoped to be since launching the upgrade. We are working through a list of bugs and issues which we did not expect to see and these are taking much longer to resolve than we had hoped. We are grateful for all of the feedback we are receiving from our Community and we are listening. We have been escalating these issues and logging each and every one to ensure that we are capturing as much feedback as possible. Survey Results We recently launched a survey, asking our members…

Ellen - Macmillan
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 - Macmillan
Accessing support during the festive season

This blog includes information about the support you can access over the festive season. This time of year, there are many celebrations taking place, and it’s often a chance to spend quality time with our loved ones. If you need a break from the festivities or are struggling with your emotions, we are here to help. With many support services closing for the holidays, we want to make sure you know how to access cancer support when you need it. “I do hope you can get the help you want - it's hard, especially at this time of the year.” Community member, Family and friends forum Support from Macmillan Support from a medical professional 24-hour helplines and webchat services Support from the Online Community Support from Macmillan The Macmillan Support…

Megan- Macmillan
The worry of waiting

Waiting for test results can be a difficult time. It may take days or weeks for the results of your tests to be ready. You may be waiting for your treatment to start or to speak with the consultant about a concern you have, either way, waiting can be hard. The waiting for results and dealing with the unknown blog explores that if you’re feeling worried, you’re not alone in feeling this way. Click on the link if you’ve not yet read this blog. Today we’re going to look at some of the practical things you can do when you’re waiting. It’s good to reach out for support if you’re feeling worried and anxious and the Community is here to offer some friendly reassurance and support. Have you been in a similar position to these members? If you have found yourself in a similar situation to these…

Megan- Macmillan
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 - Macmillan
Fixes and issues - an update for members, September 2020

Hi everyone, We want to say a huge thank you for your continued feedback and your patience since we upgraded the Community. We have been escalating all issues that have been reported and we are listening to all of the feedback we’re receiving. It has been really helpful for us to understand how you feel the site is working and what we can do to improve. We know the Community is a lifeline for many of our members and we know how important it is to be able to reach out to get support. Below is an update on where we are with some of the issues on the site. If you have any questions about the below then please don’t hesitate to get in touch with us on community@macmillan.org.uk . 1. Email notifications temporarily disabled Last week, we had to temporarily disable email notifications…

Ellen - Macmillan