Community News - Macmillan Online Community

Cost of living - support for people with cancer

" I have been signed off work now, will worry about the finances at a later stage." - Community member Money may not be the first worry after receiving a cancer diagnosis, but we know that cancer can have a severe impact on finances. You might be spending more on everyday costs, such as energy bills or extra costs if you need to travel for cancer treatment. You may be experiencing loss of income if you’ve had to reduce your hours or stop working completely. With increasing costs of living in the UK, we understand that this might be really worrying for people, particularly if you’re already struggling with the household bills. "I am a carer for my wife but money is a worry how many hours can I work part time while still getting carers allowance?" - Community member At Macmillan Cancer…

Steph - Online Community Team
Coping with hair loss after a kidney cancer diagnosis: Ellie’s story

For lots of people, worrying about side effects can have a big impact when you’ve had a cancer diagnosis. Ellie was diagnosed with kidney cancer in 2015. As part of the Digital Storytelling Project, Ellie has shared her experiences as a poem. Ellie talks about her experience getting diagnosed, and her worry around hair loss. Like Ellie, lots of members here on the Community share how they’re feeling about diagnosis, side effects and hair loss. If you’ve been diagnosed with kidney cancer, you might find support and comfort in our “Kidney cancer” forum . This is a safe place to find support and talk to other people affected by cancer. Ellie has shared her story as a video. Ellie describes her video below: “My kidney cancer journey – about trusting my instincts; the good times, bad times…

Eliza -Online Community Team
Let's talk about cancer and sex

Our recent Community News blog ‘Cancer and Fatigue – when will I start feeling less tired’ sparked off a conversation in the bladder cancer forum around sex after cancer treatment. It’s also a subject that many of you are talking about across the Community. Some people might find sex an embarrassing or tricky subject to talk about. Some are worried that it might be considered trivial or irrelevant to think about your sex life when you or your partner have cancer. Here in the Community, no subject is taboo. You can post completely anonymously and talk with others in similar circumstances. You can talk about any erections and penis pumps, vaginal dryness and lubricants, dilators or prosthetics. You can chat about how your cancer diagnosis, side effects or body image have affected your sexual…

Steph - Online Community Team
Feeling guilty when you rest - relaxation, hobbies and self-care during cancer fatigue

Living with a cancer diagnosis can be exhausting. Managing the side effects of cancer treatment. Looking after your emotional wellbeing. Plus the demands of daily life are still there, needing your attention. It’s no wonder that even dealing with simple tasks can start to feel like an incredible strain. Extreme fatigue and persistent tiredness can really impact your quality of life. Just as severe fatigue is a common symptom of cancer, it can also be a common side-effect of cancer treatment. Life with cancer-related fatigue can feel like you're running a race with no clear finish line. Thoughts of needing to pace yourself are common. Can I spare the energy to do that task today? Will those feelings of fatigue set in the next day? It can be difficult to know when you should take a break…

Matthew - Online Community Team
Cancer, pleasure and intimacy: Sarah-Jane’s story

Sarah-Jane found it difficult to cope with how her gynaecological cancer diagnosis and treatment affected her experience of pleasure and intimacy. The lack of information from her medical team and conversations around how a woman’s intimate relationship with their body and sex can change during and after cancer treatment left her feeling invisible. Macmillan’s Digital Storytelling Project is where people affected by cancer have created their own videos to talk about their experiences. Sarah-Jane is one of our stories of the month for September, where we will be focusing on cancer, sex and our relationship with our bodies. For many people, your sex life and sexual health can be important parts of your life before, during and after cancer. September is also Gynaecological Cancer Awareness Month…

Eliza -Online Community Team
Improvements are coming

On Wednesday 5 th May, we will be introducing the first of our improvements to the Community. In our previous blog, ‘Look out for improvements’ , we announced that we would be making some key improvements to the site. We are continually grateful for all of the feedback that you send to us, the Community team, as this is what has helped us to work on the things that matter the most to our members. We’ve got three releases coming to the Community over the coming months. Each of these releases will bring improvements to the site – some small fixes and some larger developments. On Wednesday 5 th May, we’ll be introducing the first of these three. EDIT: We've been informed that there will now be some downtime needed to release these improvements. The Community will be down for half an hour…

Ellen - Macmillan
The importance of our pets during our cancer journey- Jane's story

Jane, also known as jane2511 , was diagnosed with Stage 1b endometrial carcinoma sarcoma – a rare type of womb cancer in April 2022. She underwent surgery, chemotherapy and external beam radiotherapy, completing active treatment 6 months later. She became a Community Champion for Macmillan in March 2023 to support others who are facing similar experiences. When having treatment, Jane tells us how her beloved cats supported her at home. If you are an animal lover, you may have worries about looking after them whilst you are not home. You are not alone as Jane tells us her story. In March 2022 I became unwell and had to go to hospital. One of my first concerns, when the A+E doctor suggested admitting me overnight, was I can’t. I have cats at home. Not 1, not 2 but 3. For most people without…

Megan- Online Community Team
Being your own advocate- Jules’ stage 4 lung cancer story

November is lung cancer awareness month and today, we are sharing Jules’ story. Jules was diagnosed at 37 in November of 2021 with stage 4 lung cancer, which has since spread to her spine and pelvis. As her cancer is incurable, she relies on her three-monthly CT scans to tell her if she’s clear to have another three months to live. She continues to live life with her partner and son to the full, but constantly feels she has to advocate for herself to get the care she needs, leaving her feeling angry and frustrated. When you get your cancer diagnosis, there isn’t an instruction manual. I feel like I have to fight and advocate for myself. If I didn’t, I’d be left behind. When I’ve had a scan, I get on it literally a few days later emailing my team to see if my results are in. If I don't push…

Megan- Online Community Team
Supporting friends - how to ask for, or give support when you or your friend has cancer

After a cancer diagnosis, it might be difficult to know what support you need from friends. When you’re supporting someone you know with cancer, it can be difficult to know how best to support them. Some people feel that they’re not receiving the support they expected from those around them. Some may even feel that their cancer diagnosis has led them to feel ignored or excluded. In this Community News Blog, we’ll be sharing thoughts around being supported and tips on best supporting someone when they have cancer. How best to support my friend? If someone you know is diagnosed with cancer, you will probably want to help. But you might not know what you can do. Or you may have trouble finding the right words when speaking to them. You might be so worried about what to say that you avoid…

Steph - Online Community Team
'The outcome is still unknown but I am glad that I don't have to face this ordeal all alone' - My journey through Breast cancer in verse and word - Vol 1

Today we are really pleased to welcome a new guest blogger for the Community News, Amanda-Jayne. Amanda-Jayne was diagnosed with Breast cancer in June 2019 and used poetry and journaling to diarise her experience throughout. Amanda-Jayne has very kindly sent through her poetry and writing to us here and we are going to be sharing it with you over the next few weeks. So, here is volume one of Amanda- Jayne’s journey through breast cancer in verse and word. Amanda-Jayne with her husband Tristan, and parents in law, Sharron and David. Little Tinker Just a little while ago tinker came to stay, Hope she doesn’t get comfy Wish she would go away. She sits there just beneath my skin Knows there’s nothing I can do, 'She can’t hide from the doctors For her they’ll see right…

Former Member
Relationships, sex and cancer - support from Macmillan's Online Community

Lots of people are celebrating Valentine’s Day today as February 14th marks a day of celebrating love around the world. In this Community News blog we will be exploring how cancer might affect love and intimate relationships. Whether you have been together for a long time, in a new relationship or considering dating, there is support available for you. Some people find it helps to talk to other people who are in a similar situation. Members of the Community have been supporting one another with experiences of cancer, love and relationships. When you or your loved one has been diagnosed with cancer, it can be a lot to cope with. "It is like living in an alternate reality. Life is going on and we have to carry on and function as if everything is normal but at the same time we are dealing…

Steph - Online Community Team
Working and living with cancer- Lindsay’s story

T oday, one of our Community Champions Lindsay ( Irishgirl16 ) is sharing her experience of working when living with cancer and going through treatment. Lindsay was diagnosed with breast cancer in February 2021, aged 51. Active treatment took almost 12 months involving chemotherapy, surgery, and radiotherapy. Ongoing preventative treatment will continue for many years. Lindsay lives in Devon, though her job is based in Germany so she and her husband, and the dog, travel frequently between the two countries. She has a grown-up daughter who lives outside London. When my oncologist told me she’d sign me off work for 6 months at the start of my chemo, I was filled with an immediate sense of despair. Not only is my career important to me, but I’m a busy person and the thought of filling endless…

Megan- Online Community Team