Community News - Macmillan Online Community

Online Community downtime: Monday 1st Dec 10:30 pm -Tues 2nd Dec at 9am.

There is some planned maintenance taking place on Macmillan’s website overnight on Monday 1st Dec from 10:30pm. During this time the Community will experience some downtime. This means that members will not be able to log in, or join the Online Community, between Monday 1st Dec at 10:30 pm-Tues 2nd Dec at 9am. We know how important the Community is as a source of support for our members, so we will 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 Community for peer support. If you need…

Moderator - Macmillan Community
Private Messaging Update

Good morning everyone. We just wanted to let you know that our private messaging function is up and running again. We know how important this area is to our members. Not only as a way of keeping in touch privately with your friends, but also as a method of contacting our team for support. We are so sorry for the inconvenience and would like to thank you for your patience. There is some useful step by step guidance and short tutorial videos in our Help Pages to help you send private messages. As always, our team is available to support you via private messaging the Moderator account or via email community@macmillan.org.uk . Please do not hesitate to get in touch. Best wishes Rebecca, Meg, Matt, Dylan, Steph, David, and Syed Online Community Team.

Moderator - Macmillan Community
Cancer, self-advocacy and pre-existing health conditions on the Online Community

Our forum members share experiences of self-advocacy, pre-existing health conditions and variations in cancer care. Self-advocacy means speaking up, asking questions, and making informed decisions, whatever stage you're at. Managing your own healthcare can be even more difficult if you have other health conditions as well as cancer. And there are unacceptable variations in cancer care across the UK. This means not everyone gets the same experience, depending on who they are and where they live. Learn how Online Community members navigate these issues. “I have inflammatory breast cancer and was told the only options was non skin sparing mastectomy with a year long wait for reconstruction, after being referred to another hospital despite being told by the previous hospital I couldn't have…

Steph - Online Community Team
How do you balance Ramadān and living with cancer?

For many people, Ramadān is a time of reflection, faith, and connection. When you’re living with cancer, this month can also bring questions, adjustments, and mixed emotions. You may be wondering how fasting fits alongside treatment, recovery, fatigue, or medication - or how to stay connected to Ramadān if fasting isn’t possible this year. This blog brings together practical guidance and shared understanding, shaped around the experiences of people in the Macmillan Online Community. What is Ramadān and why is it relevant to my cancer experience? Ramadān is the ninth month of the Islamic calendar and is observed by Muslims worldwide through fasting, prayer, and reflection. Fasting from dawn to sunset is an important part of the month for many, but Ramadān is also about intention, compassion…

Emma - Online Community Team
Resilience - Coping in the eye of the storm

Resilience is defined as the ability to recover quickly from difficulties. The ability to be resilient is often a lifelong aim for many people. Looking after yourself and being resilient might be more important in your life now, than ever. Dr Russ Hargreaves is a Counsellor and Clinical Supervisor here at Macmillan. Russ is here to talk you through finding your personal resilience, and what helps him stay resilient. As I write this blog, we are in the midst of yet another Covid-19 lockdown. For some, this has been a huge inconvenience. For others, possibly the most worrying time of their lives. Others still have appeared to breeze through it, taking each new challenge in their stride. I don’t know which camp you are in, but I dare say you have had your moments over the past year. I certainly…

Eliza -Online Community Team
Being bodies: sex and erectile dysfunction

Our new series “Being bodies” aims to explore our relationships with our bodies, from head to toe and everything in between. We’re kicking off our series by talking about erectile dysfunction, which affects up to 80% of people with penises after pelvic cancer surgery. Erectile dysfunction (ED) can also affect people on treatments which affect their hormone levels. This can include people who have been diagnosed with prostate cancer and penile cancer, amongst others. ED can affect people for lots of different reasons, both physical and emotional. It can have a big effect on people’s sex lives, relationships and self-esteem. If this is you or your partner, you’re not alone. Today we’ll be discussing this with the help of quotes from Lorraine, a nurse specialist and sex therapist. “There is…

Eliza -Online Community Team
‘I know that there are people out there who care and can help, I’ve learnt to talk, talk and talk’ – John’s story

As Prostate Cancer Awareness Month draws to a close, we wanted to reflect today on what this awareness month means. Prostate Cancer Awareness Month is a time where we shine a light on the experiences of those who have been diagnosed with prostate cancer and also raise awareness, not only of this disease, but also of all the support that is out there for anyone who has been affected by prostate cancer. One of the most important things to remember if you have been diagnosed, is that you are not alone. As a Community we know how important shared experiences can be, which is why we are pleased to have one of our Community members, John, here to share his experience of being diagnosed with Prostate cancer at the age of 50. John talks not only about his diagnosis today, but about treatment, returning…

Former Member
“I was diagnosed at 24” - Sophie’s story

Image: Sophie (left) just after being discharged from hospital, and Sophie (right) 4 months after surgery. Sophie found out that she had the BRCA2 gene mutation at 24, which increases the risks for certain cancers. Sophie opted to have a double mastectomy, as a preventative surgery. In her guest blog today, Sophie talks about her decision, navigating the healthcare system and finding support. I’m Sophie, 28 years old, queer, pansexual and a BRCA2 gene carrier. Many of my family members have been affected by breast and ovarian cancer, and it was only when my dad was diagnosed with prostate cancer that I was advised to get genetic testing. That test came back positive. I have the BRCA2 gene mutation. This means that my risk of breast and ovarian cancer is significantly higher than that…

Eliza -Online Community Team
Let's talk about HPV

After last week’s Cervical screening awareness blog ‘ Overcoming smear fear with the Online Community ’, we wanted to talk about the human papilloma viruses (more commonly known as HPV). HPV can be detected in cervical and anal screenings and today we’re highlighting some of the most recently asked questions about here on the Community. If you need more information, please visit the Macmillan website here or get in touch with the Macmillan Support Line by calling 0808 808 00 00, emailing or using live webchat during the hours of 8am-8pm. When you have been for a cervical or anal screening test, understanding the test results can sometimes be confusing because of the language used, or it not being clear what is going to happen next. Members turn to each other on the Community to support one…

Megan- Online Community Team
“That bus, at one point the only thing consuming my vision, was slowly drifting back into the murky grey of the distance…”- Unseeing the Bus: Greg’s story #2

A week after World Mental Health Day on the 10 th of October we’re back with the second part of Greg’s series “Unseeing the bus.” In this three-part series for the Community News blog , Greg shares his experience of mental health in the face of a cancer diagnosis. If you haven’t read part one of the series, you can catch up here . Why not take a minute to read Greg's inspiringly honest account? Unseeing the bus: #2 “Live in the moment because tomorrow you might get hit by a bus......” So I made it back to the bus stop. This time last year I was convinced that I never would. I didn’t know it then, but looking back now, I realise that I was already on my way, tentatively and with a few untimely trips, but nevertheless still making my way back. That bus, at one point the only thing…

Former Member
"Summer is a time to eat lots of fresh, seasonal vegetables." - Dining with an Ostomate

We’re well and truly into Summer now, and Debbie – our ‘Chef to the Ostomates’, is back to talk to us about her favourite fresh, seasonal vegetables, and also to share with us a rather delicious ‘Courgette and mozzarella bake'. All of Debbie’s recipes are of course designed with Ostomates in mind, and in case you’d missed any of her recipes to date, you can find them all in our Ileostomy, colostomy and stoma support group here . Summertime – Courgettes and tomatoes: "For me, the stars of the season are courgettes and tomatoes." Summer is the time to eat lots of fresh, seasonal vegetables. For me, the stars of the season are courgettes and tomatoes, particularly if you are lucky enough to be able to grow them yourself. In my early days as an Ostomate, I peeled the courgettes, but after…

Former Member
“Everyone needs time to feel crappy and sorry for themselves.” - Family and friends

Our Online Community’s a real ‘Community’. However you’re affected by cancer, the Community’s a place where you can ask questions, and talk through your thoughts and feelings with people who understand what you’re going through. For family and friends, a diagnosis can have a huge impact of them emotionally, and also stretch relationships and support available within family and friendship groups. Whilst it might not always feel a priority, it’s so important for these people to take care of themselves and ensure they’re getting the support they might need. For these reasons, the Community has its Family and friends group. Here are a few recent highlights from the group to illustrate the support available: Having a bad day – a discussion that’s been running just shy of 3 years. Discussions…

Former Member