Community News - Macmillan Online Community

Hair Loss - Information and Guidance

Image: Landscape of Yorkshire moors with dark clouds sitting over a valley on a spring day. On the Community team we often ask for your input or feedback, we want to make sure we’re listening to our members. In a recent newsletter we asked for you to get in touch with the topics you would like to see us write about. In today’s Community News Blog, we’re talking about a topic you asked for - hair loss. We know from many of our members’ comments that hair loss can be difficult to deal with, both physically and emotionally. "The hair loss was something I was absolutely dreading and absolutely heartbroken about." , Breast cancer forum "Main one for me is hairloss Hair loss was awful but I've learned to accept myself with short hair now. Take each day at a time." , Breast cancer forum …

Tom C - Online Community team
Community guidelines update – sharing medical pictures

Please note that this blog is no longer up-to-date. To see the most recent review of the Community guidelines, please see our more recent blog here . We have some important information to share here on the Online Community. We have decided to trial updating part of the Community guidelines around medical images. Our Community guidelines are what everyone agrees to when they join the Online Community. They’re in place to ensure that everyone is safe while using the site. Previously, our guidelines asked that members not to upload any photos of body parts or medical documents, as this often leads other members to try and diagnose, or offer medical advice. We’ve seen from feedback and conversations on the site, that seeing images of people’s medical journeys can be an important source of…

Eliza -Online Community Team
Cancer & me 35 years on - Vol 10 'A Chance encounter'

We are back today with a further instalment of Willo's blog series 'Cancer & me 35 years on.' Willo is a member of our Community who was diagnosed with Anal cancer in 1986 while living in Zambia and has been sharing her experience of life post diagnosis, as well as her amazing artwork, in her blog series with us. So far Willo has covered her experience of moving back to England for treatment, her Brachytherapy and Abdominoperineal Resection and the amazing friends and family that helped her through. In today’s blog we pick back up with Willo on the day of her interview for a course in Fine art at a university in Liverpool. Throughout her series Willo has written about all aspects of her life after diagnosis, helping us to remember that life after cancer and moving forwards from treatment…

Former Member
Let's talk about treatment: sinus cancer and surgery.

Dan (pictured above), known on the site as Defiantlydisfigured, was diagnosed with squamous cell carcinoma in the ethmoid sinus in 2012, which is a very rare type of cancer. He underwent surgery, radiotherapy and chemotherapy. Dan found support from sharing his story online in blog posts and on social media, and he continues to raise awareness for facial cancers. I was 34 and told that I had a large tumour growing inside my head and it was not long before it would invade the space where apparently my brain was. In order to make sure I had a chance to live, they would have to take out my eye to make sure they got it all. Well as shitty as it sounds, it was an easy decision: "whatever it takes,” I said. The wheels moved swiftly after that and before I knew it, I was nervously twiddling…

Steph - Online Community Team
“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
Trans Day of Visibility 2021

Trans Day of Visibility, or International Transgender Day of Visibility, is a worldwide day to celebrate trans people and raise awareness. It’s difficult to know how many trans people in the UK and across the world are affected by cancer. However, we know that trans people may experience inequalities and difficulties in accessing the right healthcare treatment and support. It’s important to seek the right medical help and guidance if you have a symptom which is worrying you. Cancer Research UK have some online information around cancer screenings if you are trans or non-binary . If you’re interested in reading more about what being transgender means or finding some other resources if you’re transgender and affected by cancer, take a look at our Transgender Awareness Week blog . Whether…

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
Brain cancer Awareness month- Simon's Story

Simon is 45 years old from South Wales and today he is sharing his cancer experience as part of Brain cancer awareness month. If you or someone you know has been diagnosed, our Brain cancer groups are here to support you. I have had poor health most of my life due to a neurological condition called Neurofibromatosis. When in my teens I had lots of problems with my bowels and lived with a stoma bag for a year and had a total colectomy which is the removal of the large bowel. This was down to benign tumours in my guts. After this, my mother was told I wouldn’t live to see my twenties but happily, I proved medics wrong. At twenty I was diagnosed with testicular cancer. It was discovered straight away, and I had an operation to remove the left testicle, it was all I needed. As years went by…

Megan- 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
March: Brain Tumour Awareness Month

It's Brain Tumour Awareness month in March, so in this Community News Blog, we'll be highlighting related content in the Community and signposting to useful resources. We know it can be hard to know where to turn when you or a loved one has been diagnosed, so we hope you'll find some useful pointers in this blog. According to our information and support pages, there are many different types of brain tumour. They are often named after the cell they develop from or the part of the brain they start in. You can read more about the different kinds of brain tumours on Macmillan's information and support pages here. In the Community, we have several groups where you can find support if you or a loved one are diagnosed with a brain tumour. Our primary brain cancer group is for anyone affected by…

Steph - Online Community Team
Coping with anniversaries - Bereavement support

This photo was taken at 7:05 am on a Sunday while I was volunteering at Kielder for the running weekend. The grey bar across the middle is actually a fog bank drifting over Kielder water and there is one lone duck swimming from the shore to the jetty. – David Anniversaries can mean something different to everyone, it can be the birthday of a loved one, a wedding anniversary, or the anniversary of a diagnosis or of their passing. These significant dates can be difficult to cope with for many reasons. You may want to spend the day thinking about the person who has passed to celebrate their life or mark their passing in some way. You may find you would prefer not to mark the day at all, and instead choose to treat the day as any other. There is no right or wrong way to feel or react when an…

Former Member
Respecting everyone on the Online Community

Cancer can often seem to be linked to your gender. It can be easy to make assumptions that only women get womb cancer, or only men get prostate cancer. When chatting to others on the Online Community, sometimes it might feel easy to presume who someone is due to their or their loved one’s diagnosis. Anna, Macmillan’s LGBT+ Network Lead, is here to talk about why it’s important not to make assumptions when talking to others online, and how this can help our Community cancer forum to be a welcoming space for everyone. Within this blog, we are talking about gender and biological sex being different. Your biological sex is what people are assigned at birth, and gender is what people identify themselves as. For lots of people, this is the same. However, it’s not the same for everyone. We hope…

Eliza -Online Community Team

Awake and up all night?

We know that cancer can sometimes cause sleepless nights. Join our Cancer Chat forum for some company here in the 'Awake and up all night' thread.

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