Community News - Macmillan Online Community

The worry of waiting - sharing support on the Online Community

Living with cancer can often mean living with uncertainty and anxiety. Waiting for test results, can be a particularly worrying time for you and your loved ones. Whether you’re awaiting a cancer diagnosis, a referral or reviewing a cancer treatment plan, the waiting period might feel really difficult. You might find it helps to be able to talk to other people with cancer. Some people might find that they are faced with delays or uncertainties with their cancer care. In this blog we will be sharing experiences and coping strategies from around the Online Community. We will also share some useful links to help you advocate for yourself and find the right care and support. Help with your emotions and mental health when waiting Both you and your family members and other loved ones might…

Steph - Online Community Team
“Don’t be afraid to speak up and say I am struggling”

Looking after your mental health and wellbeing is so important as it influences the way you feel and cope with challenging situations. Today, one of our fabulous Community Champions Gbear is sharing her personal mental health journey in the hope it will help others who may be going through something similar at the moment. My name is Sarah or GBear as I am known in the Community. I first came to the Community in 2017 when I had just had my hysterectomy to remove cancer. I counted myself very fortunate that I was low-stage and only needed a hysterectomy as treatment, but was told they were holding off radiotherapy as a standby if needed. When I was diagnosed, I was full of anger and self-doubt as I was constantly fobbed off and even made to feel I was making up stuff and that I wasn’t really…

Megan- Online Community Team
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
Support resources for Carers, family members and friends

This blog is a support resource for carers, friends, and family members who are supporting a loved one living with cancer. When supporting a loved one it’s important to know what help you can access, so the following will tell how the Online Community can support you and where to turn for additional support. The Online Community is here to support you “There is such a thing as Carer burnout where you get to the stage that you just cannot cope… coming onto somewhere like here and just venting gave you the release valve that you needed, and you will always find a listening sympathetic ear from others who really get where you are at. I am so glad that you are already able to contribute to help others and together we will get the support that we all need.” Community member,…

Megan- Online Community Team
Being your own advocate- Jules’ stage 4 lung cancer story

November is lung cancer awareness month and today, we are sharing Jules’ story. Jules was diagnosed at 37 in November of 2021 with stage 4 lung cancer, which has since spread to her spine and pelvis. As her cancer is incurable, she relies on her three-monthly CT scans to tell her if she’s clear to have another three months to live. She continues to live life with her partner and son to the full, but constantly feels she has to advocate for herself to get the care she needs, leaving her feeling angry and frustrated. When you get your cancer diagnosis, there isn’t an instruction manual. I feel like I have to fight and advocate for myself. If I didn’t, I’d be left behind. When I’ve had a scan, I get on it literally a few days later emailing my team to see if my results are in. If I don't push…

Megan- Online Community Team
Anastrozole and reduced risk of breast cancer

Since yesterday (Tuesday 7 th November), various media outlets have been sharing a news story about Anastrozole, a medication that may be offered to tens of thousands of women who are at an increased risk of developing breast cancer. This could be a huge step forward for breast cancer prevention in the UK, and it has generated a large number of conversations across the Online Community around breast cancer treatments. Macmillan Cancer Support have been asked to provide a statement in response to this announcement. Statement from Macmillan Cancer Support Dany Bell, Strategic Adviser for Treatment, Medicines and Genomics at Macmillan Cancer Support, said: “Knowing that you have an increased risk of developing breast cancer can be difficult to deal with, so today’s news about Anastrozole is…

Syed - Macmillan
Exercise and cancer: Questions and Advice from the Online Community

Physical activity plays a crucial role in the lives of those affected by cancer, whether you are currently facing a cancer diagnosis or undergoing treatment. In this blog, we’ll highlight some of the questions asked and advice given in our Online Community. Give it time and take it slow It can be tempting to get moving too quickly post-op, specifically once you start feeling better and with renewed energy. In a post-op scenario, one Community member was eager to get back on his Ducati, motorbike. He reached out to the Community for some advice. “Ok, it's now 7 days since my operation. I just wanted your thoughts on keeping fit. I'm busting to get out on my Ducati.” Community Member, Prostate cancer forum A few members of the forum were quick to reply with some…

Dylan - Online Community Team
Rhod Gilbert: A Pain in the Neck – a powerful Head and Neck Cancer documentary on Channel4.com

What's it about? On Monday 30 th October 2023, UK broadcaster Channel 4 aired this powerful documentary about one man’s experience with a head and neck cancer diagnosis. It is always a welcome sight to see cancer experiences like this covered by national broadcasters, as it shines a light on experiences that the general public could so easily overlook. When the man at the centre of the story also happens to be one of Wales’ top stand-up comedians, an intimate and honest portrait of a cancer journey like this can be even more impactful. Rhod Gilbert received his cancer diagnosis after finding a lump in his neck back in April 2022. He was driving to Barnstable to deliver one of his comedy shows when his doctor called to confirm the outcome of his tests: Rhod had cancer of the neck, throat…

Matthew - Online Community Team
Catching up with the Liver Cancer Forums for Liver Cancer Awareness Month

October is Liver Cancer Awareness Month . In this Community News Blog we will be catching up with the liver cancer forum and the secondary liver cancer forum on the Community to see what support has been shared during the run up to the month . The liver cancer forum and the secondary liver cancer forums are friendly online support groups for anyone with liver cancer, or for anyone supporting a loved one with liver cancer. Both forums are places where you can share your thoughts, worries and anything else you might be going through with people who have been there themselves. Support on diagnosis If you or your loved one has recently been diagnosed with liver cancer, it can be comforting to be able to speak to people in similar circumstances. "I was diagnosed with inoperable…

Steph - Online Community Team
How to Use the Online Community – Private Messages, Public Forums, and User Blogs

Welcome to the Macmillan Online Community . The Online Community is a place where thousands of people come together to share their cancer experiences, tips, and advice. It’s a place where you can give and receive support with other people who understand just a little bit of what you might be going through. To make sure that you’re settled and getting support as quickly as possible, we’ve put together this short guide to show you what the main features of the site look like, and what you can use them for. When you first arrive on the Home page , you’ll see a box with two options in it: “ Join the Online Community ” and “ Log in .” If you haven’t done so yet, please sign up for a free and anonymous Online Community account by clicking the “ Join ” button. Please note that you will need…

Matthew - Online Community Team
Humour - It's no joke

How much does a polar bear weigh? Enough to break the ice. Hi, I’m Syed, a member of the Community Team and today, I would like to draw your attention to something the opening remarks didn’t. Humour. It’s almost a taboo subject that poses the question: 'can humour be used as a coping mechanism if you’re affected by cancer?' I want to leave a short disclaimer that this blog may not be for everyone as it will highlight an alternate coping mechanism through humour. For those who regularly use humour to cope, and for those who are curious as to how anyone would see the funny side with a diagnosis, I hope you find this blog helpful. Here on the Community, we have our own Laughter is the best medicine forum . You may have spotted me liking your content on this forum. Alongside the jokes scratching…

Syed - Macmillan
Sexual health and cancer: Erectile Dysfunction during and after cancer treatment

Dealing with erectile dysfunction (ED) during and after cancer treatment can be a challenging and sensitive topic for many men. In this blog, we’ll delve into the experiences of our Community members. Sharing their valuable insight on how they navigated the emotional and physical aspects of ED. Additionally, we’ll discuss sexual health and intimacy, challenging the notion of a “normal” sex life. “My surgeon gave me the option of whether to spare my nerves or not and I told him my life was the most important thing to consider and to do whatever was necessary.” Community member, Prostate cancer forum Experiences of Erectile Dysfunction Here in the online Community, no subject is taboo, and our goal is to have safe spaces where members can chat freely about what they…

Dylan - Online Community Team