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- Macmillan
Online Community downtime, Tuesday 14th June, 5am-10am

There is some planned maintenance taking place on Macmillan’s website on Tuesday 14th June, from 5am-10am. So that this essential maintenance can take place, the Online Community will experience some downtime. This means that members will not be able to log in, or join the Online Community, between 5am - 10am On Tuesday 14th June 2022. We know how important the Community is as a source of support for our members, so we always do our best to ensure the site is not unavailable for any longer than necessary. Please know that while the site is down, although you will not be able to create an account, log into the site or post, you will still be able to view the Community and read posts and discussions for support. We understand that this may impact members who rely on the Online Community…

Ellen - Macmillan
Cancer and covid as a deaf person: Eleni’s story

Do you feel like your cancer experience changed you? Here in the Online Community, we’re featuring a new series working with Macmillan’s Digital Storytelling Project, where people affected by cancer have created their own videos to talk about their experiences. For June’s Story of the Month, we’re featuring Eleni. Eleni has created a video to share their experience of receiving a cancer diagnosis as a deaf person. Their video is called ‘Will I still be the same?” Eleni wrote the following to describe what their video is about, in their own words: “The challenges of facing cancer through Covid as a deaf person. How I struggled to keep my identity during isolation and cancer treatment, and the realisation of how my own strength and connections with family, friends and the Deaf Cancer…

Eliza - Macmillan
Have you tried expressing yourself? Creativity and coping with member Wee Me

Creativity can be a helpful tool to find comfort and support. For Community member and Macmillan volunteer Wee Me, the Online Community’s “Express yourself” group and taking the time to be creative has been invaluable throughout her experience with cancer. Wee Me’s husband was diagnosed with a Glioblastoma brain tumour in September 2020. Wee Me has shared her story on Community News. 6-12 June 2022 is Carers Week , and the theme this year is ‘'Make caring visible, valued and supported'. Writing and journaling have helped Wee Me to feel seen and supported. Today, Wee Me is here to talk about how you could give being creative a go, with support from the Community. I don’t know if you’ve discovered it yet but there’s a group within the Online Community called Express Yourself . This is a safe…

Eliza - Macmillan
Thanks to you, our Community members and Community Champions.

https://youtu.be/kWX6g1XCjWc Today is Macmillan Cancer Support’s thanks to you day and this Community News Blog is dedicated to you, the Online Community members and our amazing Community Champions. Macmillan are sharing a video of thanks to everyone who supports us, or who helps Macmillan support others. You can watch it by clicking play on the video above. Feel free to share this blog and our thank you video on your own social media accounts. On behalf of the Community team, we wanted to say a big thank you to you all for the support you share with each other across the Community. With your support, Macmillan can be there for more of the three million people living with cancer in the UK, their family and friends. We are a Community of over 90,000 members affected by cancer. We support…

Steph - Macmillan
"Thank you to all the community champions, your kindness and dedication is absolutely amazing"

It’s volunteer’s week from 1 st - 7 th June and we hope you’ll join us with saying a big thank you to our amazing Community Champions. They are members of the site who dedicate their time to support members of the Online Community. “Thank you to all the community champions , your kindness and dedication is absolutely amazing” Community member, Community news blog “Thank you so much. You've been supportive from the start and encouraged me all the way. You’re an absolute inspiration x" Community member, Cervical cancer forum “ Thank again, you are always there for people with good advice and support, so very kind, no wonder you are a community champion.” Community member, Diffuse large b cell lymphoma forum “Thank you for taking on the role of champion. Your support is invaluable to everyone…

Megan- Macmillan
Dealing with Change

The emotional effects of dealing with change and cancer are something that is often talked about by our members. “This is so hard and I get frustrated with all the conflicting emotions, whether the changes I'm making are right or wrong and if Nic would approve of what I'm doing. I have a lot of support from friends and family, but am feeling very lost at the moment and can't say this to anybody apart from you lovely people on this site as only you truly understand what it's like.” - Community member, bereaved spouses and partner forum. “Feeling very emotional about it all, it’s all flooding back, not even sure I have whilst accepted what’s happed to me in the past 12 months, mixed bag of feelings tonight and not quite sure what to do with myself.” - Community member, Breast cancer forum…

Tom C - Macmillan
Finding support for stoma reversal and LARS on the Online Community

The Ileostomy, colostomy and stoma support group on the Online Community is a place where members can support one another through surgery, managing a stoma , diet tips and keeping comfortable. Following surgery for bowel cancer , colorectal cancers , other cancers and pre-cancerous conditions, some members have a permanent stoma , others may have been offered a temporary stoma . When you have a temporary stoma, you might be offered a stoma reversal. Members recently asked if we could provide a dedicated space for conversations around stoma reversal and Low Anterior Resection Syndrome (LARS). We’ve responded by adding a new forum to the Ileostomy, colostomy and stoma support group called the Stoma reversal and Low Anterior Resection Syndrome (LARS) forum. The new forum which you can find…

Steph - Macmillan
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
Confused about your diagnosis or treatment options?

Lots of members come to the Online Community with questions. It can be really difficult to cope with feeling that you don’t understand your own cancer diagnosis, treatment options, or information you’ve been given. It’s important to make sure you can access the explanations you may need. It’s also important that you are asking questions in the right place. Remember that you’re not alone, and that there’s lots of support available to you. “I'm just very confused that all this has happened so fast” Online Community member, ‘Acute myeloid leukaemia’ group Receiving a new diagnosis can be overwhelming. You might have received information you don’t understand, or medical terms which sound confusing. Not understanding your diagnosis may cause more worry and uncertainty. You might feel frustrated…

Eliza - Macmillan
Are you feeling lonely?

There’s a lot of conversations about loneliness recently as it’s been a discussion topic for mental health awareness week. Feeling lonely can affect your mental and health and w e often hear members of the Online Community talk about how lonely they feel. We’re talking about loneliness in this blog so why not stay and read more if you’re looking for some company, or to find others who are also feeling the same as you. The past couple of years during the coronavirus pandemic, most people have experienced loneliness as social interaction was stopped and we were told to stay at home to keep safe. For a lot of people, feelings of isolation and loneliness doesn’t just come from being physically alone, but something that can is often felt when you’re affected by cancer. “The last 12 months…

Megan- Macmillan
Story of the Month: Jennifer

Have you ever felt misunderstood during your experience with cancer? Here in the Online Community, we’re excited to launch a new series working with Macmillan’s Digital Storytelling Project, where people affected by cancer have created their own videos to talk about their experiences. We’re starting with Jennifer as our first story of the month for May 2022, also known on the Online Community as . Jennifer has created a video to share her experience of receiving a cancer diagnosis as an autistic person. Her video is called ‘Take a moment’. She talks about her feelings of being misunderstood by medical professionals and the assumptions made about her. Jennifer also shares how her experiences have changed her perspective on both herself and how she wants to move through the world. “I am…

Eliza - Macmillan