Community News - Macmillan Online Community

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 - Macmillan
“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 - Macmillan
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 - Macmillan
‘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- Macmillan
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 - Macmillan
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 - Macmillan
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 - Macmillan
Planned maintenance - Wednesday 17th March, 6am - 9am

Hi everyone, Due to some planned maintenance, the Online Community will enter a read-only mode between 6:00am and 9:00am on Wednesday 17th March 2021. 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 on freephone 0808 808 00 00 , or by email or webchat . Thank you for your patience and support as Macmillan continues to update and improve our online services. If you have any questions, please don’t hesitate to get in touch with us at community@macmillan.org.uk . Best wishes, Eliza, Ellen, Rachel…

Eliza - Macmillan
Coping on Mother's Day - some support from the Community

This Sunday, it’s Mother’s Day in the UK, so in this Community News Blog we’re taking some time to celebrate and remember mums. We're also sending out a big virtual hug to anyone who finds the celebration a difficult time to get through. We know that Mother’s Day can be particularly tough for those who can't see their mum, or other loved ones, for many different reasons. The Community is here for you if you need emotional support. For those who have lost a child, lost their mum or have a difficult relationship with their mum, it can be a particularly emotional time. Certain days or events like these can often trigger lots of different emotions, no matter how much time has passed. Our thoughts go out this weekend to anyone grieving for their mums, or mother-figures. You can find support…

Steph - Macmillan
Community in Bloom

We’re starting to see the first signs of spring and welcoming the brighter evenings. You may remember the ‘Winter picture festival’ that was featured on the Community cancer forum at the end of last year but because we received such great feedback from members that took part, and others who loved seeing the pictures posted, we have decided to launch our very own ‘Community in bloom’. This will be featured in our Express yourself group so please do join and get involved. This is a space for members to share springtime images of wildlife, gardens, seasonal foods and cooking, alongside anything which fits within the springtime theme. It’s a chance to show off your creativity if you enjoy crafts or have taken a picture which could brighten up the site. You’re invited to post as many images…

Megan- Macmillan

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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