Community News - Macmillan Online Community

Being bodies - Sophie, body confidence and her double mastectomy

Our new series “Being bodies” aims to explore our relationships with our bodies, from head to toe and everything in between. We recently featured Sophi e ’s story, where she talked about her experience being diagnosed with the BRCA2 gene mutation at 24 years old. Today, she’s here to talk about how having a double mastectomy changed how she felt about her body, for the better. A bit about me... I’m Sophie, 28 years old, queer and a BRCA2 gene carrier. Many of my family members have been affected by breast cancer. At 24, I decided to get genetically tested for the gene after my dad was diagnosed with prostate cancer. After that test came back positive for BRCA2, I decided to have a preventative double mastectomy with reconstruction. I have always had a positive relationship with my body…

Eliza -Online Community Team
Planned Online Community Maintenance - Thursday 28th of April, 4am onwards

Hi everyone, Due to some planned maintenance, the Online Community will enter a read-only mode for 4-8 hours, beginning this Thursday at 4:00am . It may last until midday but has been planned at this time to provide minimal disruption to our members. This means that you will not be able to log in, post or reply on the Online Community during this time. You will still be able to read posts and blogs on the site. If you feel you need some support while the Online Community is unavailable, please remember our Support Line is here for you. Our teams are available 8am-8pm, 7 days a week by phone on freephone 0808 808 00 00 and also by email or on webchat . Thank you for your patience and support as Macmillan continues to update and improve our online services. If you have any questions,…

Tom C - Online Community team
Cancer & me 35 years on - Vol 11 Good news, bad news

We are back today with the next 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 since last summer. 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 as she prepares to start a university course in Graphic design at Liverpool Poly. Sketch by Willo - Wigan to Euston 'Once more I heard him snort – “see your solicitor – write to your MP – don’t give up!” I did just that and got…

Former Member
National pet month

April is National Pet month and we want to take a moment to talk about the support given . F or those who have furry, smooth, big or small animals in y our lives , you know how much they can affect your we l lbeing. In our Animals are family too forum , we see how much a nimals mean to you and how they have provided support in different ways. “While I was having my radiotherapy and chemotherapy in March/April 2019, Chynna would always come on my knee every day while I was waiting for the hospital transport to collect me. It was almost as if she knew what I was going through.” - blackstuff “About 6 weeks before I was diagnosed with cervical cancer my dog would not leave my side, he's normally quite clingy but I noticed he was exceptionally clingy just would not leave me, I am about to…

Former Member
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

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