Community News - Macmillan Online Community

Sharing scalp cooling experiences

There’s no one size fits all when it comes to cancer treatment and dealing with side effects . Although there can be common side effects such as hair loss, sickness and fatigue , not everyone will experience them. Hair loss seems to be a side effect that many people worry about when having chemotherapy treatment and the use of a scalp cooling system (also referred to as the cold cap ) may have been mentioned to you. If you’re wanting to hear from those who have used the scalp cooling system ( cold cap ), or are curious about what scalp cooling is, then this blog has what you are looking for. You can also find our most recent blog about scalp cooling, hair loss and regrowth here. Here on the Online Community we often see questions like the following posted on the site. If you have a…

Megan- Online Community Team
Where do you find support online?

Hi everyone, It's Eliza from the Community team. Finding the right support for you when you're going through an experience with cancer is really important. We're interested to know whether you use other support groups outside the Online Community. You'll see the poll below this post, where you can vote to let us know. Making the Online Community better for you is at the heart of everything we do. If you'd like to talk to us to offer feedback about the Online Community, please remember you can email the Community team at any time at community@macmillan.org.uk .

Eliza -Online Community Team
Viewing groups - which do you prefer?

Hi everyone, It’s Ellen here from the Community team. We are hoping to get your thoughts on a change we are thinking of making to the way you currently view groups. We’re looking at making this change based on some of the feedback we’re seeing across the site, and within the feedback survey. You’ll see a poll below this post, where you can vote for what you like best. Currently, when you go to your group, you see a list of discussion titles. This is shown in picture A below. This view allows users to see the title of the discussion, but they need to click into the discussion to see any of the posts there. The other option we have is to change this view so that when you go to your group, you see the latest activity within the group. This is shown in picture B below. This view allows…

Ellen - Macmillan
"It's beginning to look a lot like Christmas" - Community Christmas prize draw

As the nights draw in and each day ends, we get closer and closer to Christmas. It’s a time where we often look back and reflect on the year that’s been and think of the things we’re grateful for and we're grateful for you - the thousands of members who make this site the true community that it is. To mark that, we’d like to be able to give a little something back. Throughout the Christmas period we’ll be hosting three prize draws which are all free to enter. We’ll be asking you for a few of your favourite Christmas jokes, traditions and more. This week, we’re giving away a beauty hamper, kindly donated by Boots, who have been partners with Macmillan for 10 years and raised a massive £16.6 million for us. Boots also have specially trained Macmillan Beauty Advisors who offer face-to-face…

Ellen - Macmillan
Are you feeling better, or just distracted?

For people affected by cancer, managing your mental well-being is an ongoing challenge. Distraction can play a useful part in that. Distraction can mean different things to different people, talk of ‘good’ and ‘bad’ distractions can be confusing for those just looking to take a break from worry or stress. The last year and a half with coronavirus has made it even more challenging for cancer patients, and their family and friends, to find effective distractions. In today’s Community News Blog, we’re talking about distractions, be they ‘good’ or ‘bad’. 'Good' Distractions We wanted to start by sharing a poem by one of our members, Bluebell Woods . TV. Day time. Quiz shows, news, Real Deals. Breakfast TV, loose woman? Maybe not at that stage, yet. Granny. Blankets. Graduating to a hat. Nothing…

Tom C - Online Community team
“I’m fine”: how do you really cope as a carer?

Community member and Macmillan volunteer Wee Me has been through a lot since her husband was diagnosed with a brain tumour in August 2020. Along the way, she has learned a lot about her own resilience and looking after her wellbeing. You might have read Wee Me’s story in her recent guest blog, “Caring for a partner with a brain tumour.” Today, Wee Me is talking about the coping strategies that work for her and how it’s ok to cope in a way that feels right for you. One of the frequently asked questions or themes running through the ‘Carers only’ group and many other groups within the Macmillan Online Community is “How do you cope?” How many times have you been asked that and replied along the lines of “I just get on with it. I’m fine.” Now I can’t begin to imagine the emotional journey…

Eliza -Online Community Team
Check-up appointments after endometrial cancer treatment- Jane's story

Jane is recovering from Endometrial Carcinoma Sarcoma and is one of our Community Champions. She shares her experiences to help others who are on a similar journey. Jane has kindly put together this blog to share her recent check-up experience in the hope that it will reassure those who are about to undergo one. "My cancer was endometrial carcinoma sarcoma 1b Grade 3 with LVSI. When active treatment ends for Endometrial Cancer , it is normal for regular check-ups to be scheduled. There can be some variation between hospitals and what may happen due to different diagnoses, stages, grades, and treatments, but this is my experience. I had a total laparoscopic hysterectomy with bilateral salpingo-oophorectomy . This was followed up with carboplatin and paclitaxel chemotherapy and external beam…

Megan- Online Community Team
‘Cancer can’t take my sense of humour’- Brian's story

Brian is one of our Community Champions who was diagnosed with prostate cancer three years ago. He’s married with four children and loves life. Humour has always been a big part of his family life and in this blog, he is sharing how laughter helped him through his prostate cancer diagnosis. For me humour is great because cancer is such a serious topic, it helps folk relax and realise that life continues. Cancer can’t take away my sense of humour. Three years ago, I was one of those men who thought Prostate cancer only affected other people, how wrong was I. Due to various symptoms I ended up in hospital. A few days later my consultant urologist came along with his entourage, drew my bedside curtains, sat on my bed, removed his glasses and in all seriousness said, “Brian, I am so sorry to…

Megan- Online Community Team
Telling children about cancer

Alongside receiving a cancer diagnosis, one of the toughest moments a person can face is having to tell their children that they have cancer. Finding the words can be difficult, especially when trying to process the information yourself. It’s challenging but a conversation many will have to have, especially if mum or dad could potentially be struggling physically. In this blog, we take a look around the Community and see how other members have approached this sensitive subject. How do you approach this subject? Is there only one way to approach this? You can ask a professional such as a doctor or nurse, but maybe they haven’t experienced what other members have. The things they wish they had done differently whilst telling their children as well as the things that worked for them. The most…

Syed - Macmillan
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
Caring for a partner with a brain tumour – a Community member’s story

Wee Me is a member of the Online Community and Macmillan volunteer. Her husband was diagnosed with a Glioblastoma brain tumour in September 2020. Here on the Community, there's lots of support for carers and loved ones of those diagnosed with cancer. We have our 'Carers only' group and our 'Family and friends' group where members like Wee Me find and offer support. Following on from a conversation in the ‘Carers only’ group where members talked about what they wish they’d known at the beginning , Wee Me is sharing her family’s story from diagnosis, to today. So, March is Brain Tumour Awareness month …. if only our family didn’t have to be so aware. At 7.52am on Wednesday 26 th August 2020, I was sitting at the kitchen table quietly finishing my breakfast. At 7.53am, as I got up from the…

Eliza -Online Community Team
Cancer and fatigue. When do you start feeling less tired?

In our recent Community News Blog 'Awake and can't sleep? Some help with getting through the night' we addressed the issue of difficulty sleeping. We shared conversations from members around the Community around sleeplessness and getting support through the night. If this might be helpful to you, you can catch up with Eliza's blog here. You don't need to be experiencing difficulty sleeping to feel tired when you have cancer. Cancer itself and cancer treatment can both cause extreme tiredness, also known as 'fatigue'. We know that many of you come to the Community looking for support with managing your energy levels and improving your quality of life. In this Community News Blog, we'll be sharing some conversations, tips and support about fatigue shared around the site. Fatigue means feeling…

Steph - Online Community Team