Community News - Macmillan Online Community

Hysterectomy support from the Macmillan Online Community forums

A hysterectomy can be hard to deal with physically and emotionally. Our forum members can help you cope through shared hysterectomy experiences. Some members have been talking about total hysterectomy (sometimes known as a simple hysterectomy) where the surgeon removes the womb and cervix. Others are discussing radical hysterectomy where the surgeon also removes the upper part of the vagina, pelvic lymph nodes and tissue surrounding the womb and cervix. Whatever your experience, it can be really helpful to be able to talk to real people who have been through a hysterectomy. How our forum members support each other with hysterectomy When you are facing a hysterectomy and you’re not sure what to expect, you can chat things through here on the Community. Prior to surgery or hospital stay…

Steph - Online Community Team
UPDATED: Online Community downtime - Monday 5th December

UPDATE: Due to unforeseen circumstances, we have had to re-schedule our update for next Monday, 5th December. This means that the Community will be up and running as usual tomorrow. The site will be inaccessible between 1pm-7pm on Monday 5th December. We apologise for any inconvenience this may cause and if you have any questions, please do post in the comments section below. As users of our Online Community, we want to update you with some key information about some upcoming essential maintenance. On Monday 5th December we will be updating our Community to the latest version of the software we use to provide the platform. We’re doing this to ensure the site continues to run smoothly for our users. The update will also fix some technical issues, which we’ve talked about below. In order…

Ellen - Macmillan
When your parent has cancer: Bertrand’s story

Bertrand describes that he was at the pinnacle of his life when his papa was diagnosed with cancer. Faced with handling becoming a parent himself and navigating his papa’s incurable diagnosis, Bertrand has created a video about finding what he calls “The Grey Area.” A loved one’s cancer diagnosis can have a huge impact. It can be difficult to find the balance between taking care of yourself, your career and your family, alongside looking after your loved one who has been diagnosed. Bertrand felt he needed to navigate a new stage in his relationship with his parent. He needed to reconcile with needing his papa’s support and guidance, while supporting his papa too. “I wanted his guidance, but I didn’t want to bother him. As I felt that surely any issue I had was minor compared to what he…

Eliza -Online Community Team
Lung Cancer Awareness Month - support and kindness shared in the lung cancer forum

November is Lung Cancer Awareness Month. In this Community News Blog we will be catching up with the lung cancer forum on the Community. The lung cancer forum, which you can find here is a friendly online support group for anyone with lung cancer , or for anyone supporting a loved one with lung cancer . It’s a place where you can share your thoughts, worries and anything else you might be going through with people who have been there themselves. Read the blog to find out what support has been shared in our lung cancer support community recently. “I have only been a member here for just over a week but find it really helpful.” Community member, lung cancer forum Thinking of joining the Community for support? When you or your family member has been diagnosed, it can be a whirlwind…

Steph - Online Community Team
What do you need from the Online Community?

Do you want to let us know what you think about the Online Community? We’ve launched our annual survey for 2022! We want to hear what you would like to see on the Online Community, and how you've found your experience so far. The survey should take no more than 10 to 15 minutes to complete. The survey is anonymous. Please complete our survey here. This survey is designed to give you an opportunity to provide feedback on your experiences of using Macmillan’s Online Community. This helps us to make improvements where needed and ensure that it continues to be a valuable resource for people living with cancer. If you have any questions or want to find out more, please feel welcome to contact us at community@macmillan.org.uk .

Eliza -Online Community Team
Getting a breast cancer diagnosis: Issy’s story

“When I think about my cancer journey, I think about choices. It was about choosing to take ownership of my own personal cancer journey.” You might remember Issy from her recent feature on Community News , where she shared her story following her breast cancer diagnosis and how her relationship with her partner and herself evolved. As part of Breast Cancer Awareness Month 2022 , Issy is back to talk about another part of her story. This time, Issy talks about how important it can be to be an advocate for yourself and to listen to your body. She talks about how her own determination to ask for further tests and to keep talking to her doctor, was crucial in getting diagnosed. Issy has shared her story as a video as part of Macmillan’s Digital Storytelling project. Macmillan’s Digital Storytelling…

Eliza -Online Community Team
Breast Cancer Support Online in 2022

With October wrapping up and it being breast cancer awareness month, today we’re taking the time to check in and catch up with one of our most active groups on the Community – our breast cancer forum. New to breast cancer support online? If you’re new to our Online Community and affected by breast cancer, why not introduce yourselves in the ‘ New here, say hello ’ section of the breast cancer forum . You might be surprised at just how much support you find. "Thank you so much. That is so helpful to hear. I'm glad that your surgery went well and I hope that you are continuing to recover well. Thank you again." Community member, Breast cancer forum . Popular Discussions Whether you are a new member, or established on the site, there are always places to find support. One thread that always…

Tom C - Online Community team
Cancer and the menopause - looking back on Menopause Awareness Month on the Online Community

Looking back on October, Menopause Awareness Month , we will be highlighting conversations from across the Community related to menopause and cancer. Members have been discussing menopausal symptoms related to their cancer treatment. Some members might be experiencing an early menopause due to their cancer treatment, or coping with a natural menopause whilst living with cancer. Members also discussed coping with menopause at the same time as caring for a loved one with cancer or during a bereavement. Whatever your experience, the Online Community is here for you if you want to talk about any issues relating to menopause and cancer. In the breast cancer forum, members have been talking about early or sudden menopause. “Just getting used to the new me from the hormone therapy - I was…

Steph - Online Community Team
Information overload? We're here to help

Trusted information from day one When you or your loved one is diagnosed with cancer, it can feel like the whole world has turned upside down. You may feel upset, angry, sad, worried or simply numb. “Still trying to take it all in! As I had been expecting to be told I had kidney stones.” Community member , ‘ Bladder cancer ’ forum “I was told I had bowel cancer and my world fell apart.” Community member , ‘Bowel (colon and rectal) cancer ’ forum “Hi, I was diagnosed with Vulval cancer last week…I am in total limbo and do not know how I am supposed to be feeling ” Community member , ‘ Vulva cancer ’ forum As well as being worried about your health, or the health of your loved one , you may find your head is full of lots of different questions. ‘What will treatment be like?’ ‘How will…

Former Member
Hospice and respite care

There are often members of the Community sharing personal experiences with accessing supportive care from a hospice. Getting support from a hospice may not be something you have considered before as a lot of people think it's only end of life care that is provided. Hospices are there to help those with a terminal illness or life limiting condition and this blog is sharing some useful information about hospice and respite support. Stay and read more if you want to read the personal experiences of our Community members. There’s so much support that a hospice can offer, and it can be useful to know how they can support you and your loved ones for when specialist palliative care is needed. Usually people access help from a hospice if a someone needs specialist end of life care, however respite…

Megan- Online Community Team
Online Community downtime: Thursday 13th October 2022- 7am to 9am

There is some planned maintenance taking place on Macmillan’s website on Thursday 13th October, from 7am-9am. 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 7 am - 9am On Thursday 13th October2022. 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…

Moderator - Macmillan Community
Pregnancy and cancer support from the Online Community

A cancer diagnosis is upsetting. If you’re pregnant when diagnosed with cancer it can be even more frightening and confusing. You might feel you need additional support as you receive your cancer diagnosis , navigate treatment options and cancer treatment . The Community is here to support you, in addition to a wide range of help available from Macmillan and other support providers. Members of the Community might also be supporting a loved one with cancer at the same time as going through a pregnancy. Or perhaps you are coping with your own cancer diagnosis at the same time as your partner is pregnant. Whatever your situation with cancer and pregnancy, y ou might benefit from additional support as you go through this difficult time. The Community is here for you as a virtual cancer support…

Steph - Online Community Team