Community News - Macmillan Online Community

“The biggest shock of my life." Stage 4 metastatic breast cancer to the bones: Karin’s story.

During her first routine mammogram in July 2019, Karin, aged 51, received the shocking news that she had stage 4 metastatic breast cancer to the bones. She lives happily in Stroud with her partner, 2 rescue dogs and foster pups. In this blog, she shares her story with us, giving us a window into her life, over 4 years after receiving the shocking news. Receiving the news That was the biggest shock of my life, being diagnosed with stage 4 breast cancer with mets to my bones from my first routine mammogram. “Treatable, not curable”, they said. Me, terminal cancer! Under Palliative Care. What!? Once I’d picked myself up from that one and started treatment, I’ve luckily had no avid disease (NAD) for 4 years. The COVID pandemic added to the cancer bubble mayhem, but I somehow navigated my way…

Dylan - Online Community Team
Life after cancer – getting the all-clear, recurrence anxiety, and moving on

The Macmillan Online Community plays host to a wide range of different discussion forums. As well as different forums for a whole range of cancer types, the Community also has spaces for a range of cancer experiences. One such space is our Life after cancer forum . It’s a common misconception that every person will have an exclusively positive reaction to being given the ‘all-clear.’ It’s tempting to think that getting this hoped-for news will be the moment all your stresses and worries instantly melt away forever. But is that true? Although feelings of relief are common, they can sometimes be short-lived, or at least far more complicated under the surface. “How do we do this? How do we manage to put one foot in front of the other and get out the door? Then meet people, who may…

Matthew - Online Community Team
“It has taken me over 5 years to come to terms with what I went through” -Dimple is sharing her story

Dimple shares her cancer diagnosis story and how telling her children about her cancer was the hardest thing she has ever done. Cancer and treatment can have an emotional and financial impact on your life and Dimple tells us about some of the challenges she faced when living with cancer. On the 29th of December 2015, I was diagnosed with Cancer or Cookies as I called it because the word still scared me so much. The term the doctor used when they told me I had Cancer was primary cancer unknown - in other words the cancer had spread, and they didn’t know where it had started. The doctor that told me didn’t even ask if I had someone with me or how I would be getting home. It felt like I was just on his list for that day and he delivered his news and carried on with his day. I managed to hear…

Megan- Online Community Team
Summer Picture Festival

What better way to look back on summer than through pictures? This summer, we asked Online Community members to share their experiences of summer through photographs and artwork as part of our Summer Picture Festival in our “Express yourself” forum . This forum is a place to celebrate creativity and how being creative can help you to feel better. Here on Community News, we’ll be reflecting on summer as we go into autumn by looking through a selection of members' photographs and artwork. Remember you can also see all the pictures from this year’s Summer Picture Festival in the “Express yourself” forum . Lots of members shared pictures of flowers in bloom. If you share a love of gardening, why not take a look at our blog on gardening chat ? Some members shared their paintings. If you…

Eliza -Online Community Team
Coffee, cake and catching up with the Community

Lots of us enjoy an occasional treat. Whatever you’re going through, it’s good to have something to look forward to. September is the month of the famous ‘ World’s Biggest Coffee Morning ’ where people all over the world get together whilst fundraising for Macmillan Cancer Support . In celebration of coffee mornings everywhere, in this Community News Blog we will be exploring the Community’s love of baking and getting together. What’s your favourite treat? Earlier in the year, Community member Mum started a baking thread, sharing a photo of their freshly baked chocolate mocha muffins. We thought they looked so delicious that we have used their image to accompany this blog. "I think a few people here like baking cakes and a few more perhaps like eating them and discussing…

Steph - Online Community Team
Living with Lymphoma- Yamour's shares her story with her mother Isaf.

Yamour and her mum, Isaf, talk in their Mother Tongue Turkish, about some of the issues and cultural stigmas they encountered when Yamour was diagnosed with stage 4 non-Hodgkin lymphoma when she was aged 21. . This video is part of Macmillan’s mother tongue project. (4 minutes and 49 seconds). We hope to feature different lived experiences here on the Online Community to represent different ethnic cultures and communities, so nobody feels they are facing cancer alone. Please see an English transcript written below. There are also English subtitles available when watching the video. For additional support information in other languages, scroll to the end of this blog page. Transcript Yamour : In the early days after I got diagnosed with cancer my father would say, “No, daughter…

Megan- Online Community Team
"People are afraid to use the word cancer in our Community." - Nahida and Saddiya tell us more

Nahida & Saddiya speak in their Mother Tongue Sylheti, a dialect of Bengali, to talk about some of the cultural stigmas when faced with a cancer diagnosis. This video is part of Macmillan’s mother tongue project. (3 minutes and 54 seconds). We hope to feature different lived experiences here on the Online Community to represent different ethnic cultures and communities, so nobody feels they are facing cancer alone. Please see an English transcript written below. There are also English subtitles available when watching the video. For additional support information in other languages, scroll see the 'Additional support information' section at the bottom of this page. Transcript Saddiya : People are afraid to use the word cancer in our Community. They immediately panic the moment…

Megan- Online Community Team
"I became a stage 4 lung cancer patient from an ordinary man overnight." - James shares his story

James and his wife Helen, talk in their Mother Tongue Cantonese to share some of the cultural stigmas and issues they faced when James was diagnosed with lung cancer. This video is part of Macmillan’s mother tongue project. (4 minutes and 38 seconds). We hope to feature different lived experiences here on the Online Community to represent different ethnic cultures and communities, so nobody feels they are facing cancer alone. Please see an English transcript written below. There are also English subtitles available when watching the video. For additional support information in other languages, scroll to the end of this blog page. Transcript James: Before I was diagnosed with lung cancer, I had no idea that cancers can actually be treatable. From my own experience, I learned…

Megan- Online Community Team
Help when you’re a helper: Dennis’ story

Dennis’ wife Winnie was diagnosed with acute myeloid leukaemia. Like many people here on the Online Community, Dennis was her carer for many years, alongside looking after their son and family. Dennis struggled with his mental health and found support from Macmillan. After Winnie sadly died, Dennis became a volunteer nine years ago and continues to support other people living with cancer. Today here in Community News, Dennis is sharing his story and experiences as a carer, partner and how he went from needing help, to being the helper. Dennis’ shared his story as video, titled “Help to be a helper”. You can watch Dennis’ video below and hear him share his experiences. Dennis’ video has subtitles. You can also read Dennis’ story within this blog. www.youtube.com/watch Dennis' Story: Help…

Eliza -Online Community Team
Coping with bereavement

Saying goodbye may always be a difficult moment. Sometimes, we may not want to say goodbye to friends after a lovely day out, other times we may use it prematurely to get out of an awkward situation. Then comes what some may class as the most difficult goodbye, the one where it’s time to say farewell to a loved one forever. The loving connections we make throughout our journey called life, be it our siblings, our friends, our loved ones and our children. It may become almost impossible to say goodbye when it’s their time. It can be a difficult thing to process. Realising that your loved one may not have long left. We may all eventually experience loss but in this blog, we will take a focus on the ways that members of the Community, may find helpful when coping with grief. Seeing a loved…

Syed - Macmillan
"Not enough people of colour are going onto that register"- Wilfred's Acute Myeloid Leukaemia diagnosis and treatment story

Wilfred was born in Jamaica and is part of the Windrush generation. He came to the UK around the 1960s and settled in Birmingham. Wilfred was diagnosed with acute myeloid leukaemia and shares his reflections post-diagnosis and treatment, alongside the challenges a black person needing a stem cell transplant can face. Wilfred also talks about the need for emotional support when living with cancer and how Macmillan can help. The Online Community is a space to talk about how you are coping and access emotional support in our cancer forums. Join our Emotional support forum or post in our other cancer forums if you need additional support today. The Community is a safe and supportive space for people to share their personal experiences with cancer so if you are affected by Acute myeloid leukaemia…

Megan- Online Community Team
When good intentions hurt: Exploring Toxic positivity and conversations about cancer

While positive affirmations can be uplifting, is it possible to have too much of a good thing? Is ‘always positive’ always helpful? In this blog, we’ll be exploring a concept known as ‘toxic positivity’, and how it affects those facing cancer. We'll also offer guidance on how to engage in conversations about cancer. What is toxic positivity? When talking about difficult or upsetting emotions, a natural reaction might be to try and counter those feelings with overly positive responses. Although the intention is to provide comfort, positivity can become toxic when it dismisses valid struggles and negative emotions. Emotions are complex, so we need to embrace the full spectrum of feelings, both positive and negative feelings. Toxic positivity can be emotionally draining. The pressure to…

Dylan - Online Community Team