Community News - Macmillan Online Community

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
Are you looking for some hope?

It can be a challenge to feel hopeful during a difficult time so in today’s blog, we are sharing lots of hope from the Community. Although some members may not feel very hopeful with their personal circumstances, we hope the following will offer some reassurance, inspiration and positivity. “Firstly I want to give you a warm welcome to the group no one WANTS to join but having joined, I hope you listen and read posts and other peoples Profile pages, so you know there is hope.” Community member, Living with incurable cancer forum The word hope was used 1846 times on the Community last month. In a short space of time, it shows how often people come to the Community to find and offer reassurance and hope when facing difficult times. “There is hope I’m still…

Megan- Online Community Team
Supporting friends - how to ask for, or give support when you or your friend has cancer

After a cancer diagnosis, it might be difficult to know what support you need from friends. When you’re supporting someone you know with cancer, it can be difficult to know how best to support them. Some people feel that they’re not receiving the support they expected from those around them. Some may even feel that their cancer diagnosis has led them to feel ignored or excluded. In this Community News Blog, we’ll be sharing thoughts around being supported and tips on best supporting someone when they have cancer. How best to support my friend? If someone you know is diagnosed with cancer, you will probably want to help. But you might not know what you can do. Or you may have trouble finding the right words when speaking to them. You might be so worried about what to say that you avoid…

Steph - Online Community Team
Music speaks – how music can help us get through difficult days

Community member and Macmillan volunteer Wee Me ’s husband was diagnosed with a Glioblastoma brain tumour in September 2020. You may know her from the “Carers only” group or “Glioblastoma multiforme brain tumour” group . Wee Me has shared lots of blogs here on the Community News. She has shared her experiences and support, from how to cope with hearing news to how to cope as a carer. Today, Wee Me is here to talk about something which is very important to her as a source of comfort and support – music. To quote Hans Christian Andersen, “where words fail, music speaks.” Music is all around us and to some it might just be background noise in a shop or “hold” music on a phone call, but it’s there whether you consciously recognise it or not. It touches us all and gets into your subconscious…

Eliza -Online Community Team
Life One Year Later- Jane’s story

Jane recently shared her ‘ Importance of pets during our cancer journey’ blog and is back as a guest blogger to share her reflections on her Endometrial cancer experiences one year later. She talks about some of the lasting effects from her chemotherapy and radiotherapy treatments and also about dealing with the fear of recurrence. Jane also talks about how she recognises the positive changes on her life and talks about her volunteering role as a Community Champion. I am just coming up to a year since my treatments ended, the cancer has gone but life has changed. I think that when the treatments end, there is time where you can begin to try to process it all. The endless trips to hospital have stopped and now it is just once every twelve weeks. You sort of almost forget it until the letter…

Megan- Online Community Team