Community News - Macmillan Online Community

“Am I the only one awake?” Cancer and sleeplessness

Have you been up in the early hours of the morning because of your cancer diagnosis? If so, you are not alone. Our Community is available 24 hours a day, making it possible to post or reply in the forums no matter what time you are awake. We often have members writing about their struggles with sleep. In this blog, we want to feature some of those discussions and highlight insightful experiences and wisdom shared. “At times sleep is a mystery on the cancer journey” Community member, Breast cancer forum “Hi folks, this is my first post and it’s the middle of the night because I can't sleep.” Community member, New to the community forum Timeless support: A 7-year conversation Seven years ago, a member of the breast cancer forum found herself…

Dylan - Macmillan
Cybersecurity: Staying safe on the Community and beyond

Ever since the pandemic, the average number of people using the internet and being present online has increased significantly. Ofcom reported that on average, a person was online for more than 4 hours every day. Naturally, the number of cyberattacks have also increased. The BBC reported that there were around 6,000 fraud and scam cases related to the pandemic in general. It meant that there were more numbers online than before. As we’re trying to come back into some form of a normal routine, it’s important to make sure you’re aware of the risks that being online may entail and what you can do to protect yourself online. As the new year dawns on us in January, in this blog, we take a dive to see how you can help to protect yourself online on the Community and beyond to try and ensure you…

Syed - Macmillan
Reflection: Looking back

As we bid farewell to the past year and welcome the dawn of a new one, it may often mark the time for reflection and gratitude for approaching a New Year. For many of us on the Community, this transition may hold profound significance as we reflect on our individual journeys affected by cancer and may try to look ahead with hope, resilience, and newfound determination as a new year, looms in the horizon. For some, the past year might have been marked by the whirlwind of treatments, doctor’s appointments, and moments of uncertainty. The difficulties you may have faced, the triumphs you may have celebrated – each step that may leave an enduring imprint on our lives. Let’s see how the members of the Community reflect on their journeys so far. This Community member reflects on the difficult…

Syed - Macmillan
Accessing the Online Community – Help with account creation and log-in problems

Creating an account Signing up for an Online Community account is usually very easy. You choose whether you want to sign in using an email address or a social media account, you provide a few security details, then you pick a public username. That’s it – you’re all set! Unfortunately, this being the internet, sometimes things go wrong. To save any confusion, it’s a good idea to see what the process looks like when things work as expected. You can either view the handy video below or read the illustrated instructions to learn more about the process. vimeo.com/.../885595769 NOTE: The descriptions and images featured in this guide refer to the Online Community website when using a computer or large screen device. We recommend accessing the website using a full computer or laptop when attempting…

Matthew - Macmillan
Be kind to yourself: Self-compassion and cancer

When navigating the challenging journey of a cancer diagnosis, our Online Community often provides gentle, yet profound wisdom. The phrase "be kind to yourself" echoes through many of our forums on a weekly basis. This blog is a collection of quotes from our members that centre around the concept of being kind to oneself. These snippets reflect the shared wisdom and experience of individuals facing the challenges of cancer. Patience and self-compassion in recovery While recovering, patience and self-compassion play significant roles. It's important to take things slow and take each day as it comes. The following quotes illustrate the lessons learned through patience and self-kindness. “It takes time to recover and everybody's journey is very different. Please be kind to yourself…

Dylan - Macmillan
The worry of waiting - sharing support on the Online Community

Living with cancer can often mean living with uncertainty and anxiety. Waiting for test results, can be a particularly worrying time for you and your loved ones. Whether you’re awaiting a cancer diagnosis, a referral or reviewing a cancer treatment plan, the waiting period might feel really difficult. You might find it helps to be able to talk to other people with cancer. Some people might find that they are faced with delays or uncertainties with their cancer care. In this blog we will be sharing experiences and coping strategies from around the Online Community. We will also share some useful links to help you advocate for yourself and find the right care and support. Help with your emotions and mental health when waiting Both you and your family members and other loved ones might…

Steph - Macmillan
“Don’t be afraid to speak up and say I am struggling”

Looking after your mental health and wellbeing is so important as it influences the way you feel and cope with challenging situations. Today, one of our fabulous Community Champions Gbear is sharing her personal mental health journey in the hope it will help others who may be going through something similar at the moment. My name is Sarah or GBear as I am known in the Community. I first came to the Community in 2017 when I had just had my hysterectomy to remove cancer. I counted myself very fortunate that I was low-stage and only needed a hysterectomy as treatment, but was told they were holding off radiotherapy as a standby if needed. When I was diagnosed, I was full of anger and self-doubt as I was constantly fobbed off and even made to feel I was making up stuff and that I wasn’t really…

Megan- Macmillan
How a cancer diagnosis is communicated – your experiences with online test results

The following blog is posted on behalf of John N - Macmillan . John is one of our Service Knowledge Specialists working to deliver best practice within the Macmillan Nurses team. In today’s blog, John is looking at the rise in NHS hospitals delivering cancer test results online, as well as the impact new services like this can have on patients. At the end, he’ll be asking for you to share your experiences with any of the topics mentioned in this blog. How much information do you want? Finding out that you have cancer can be a shock, even if the cancer diagnosis was strongly suspected. Some people try to learn as much as possible about their diagnosis. Being informed can help when talking to medical teams or telling family and friends. It can also help people feel involved in their care…

Matthew - Macmillan
Support resources for Carers, family members and friends

This blog is a support resource for carers, friends, and family members who are supporting a loved one living with cancer. When supporting a loved one it’s important to know what help you can access, so the following will tell how the Online Community can support you and where to turn for additional support. The Online Community is here to support you “There is such a thing as Carer burnout where you get to the stage that you just cannot cope… coming onto somewhere like here and just venting gave you the release valve that you needed, and you will always find a listening sympathetic ear from others who really get where you are at. I am so glad that you are already able to contribute to help others and together we will get the support that we all need.” Community member,…

Megan- 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- Macmillan
Anastrozole and reduced risk of breast cancer

Since yesterday (Tuesday 7 th November), various media outlets have been sharing a news story about Anastrozole, a medication that may be offered to tens of thousands of women who are at an increased risk of developing breast cancer. This could be a huge step forward for breast cancer prevention in the UK, and it has generated a large number of conversations across the Online Community around breast cancer treatments. Macmillan Cancer Support have been asked to provide a statement in response to this announcement. Statement from Macmillan Cancer Support Dany Bell, Strategic Adviser for Treatment, Medicines and Genomics at Macmillan Cancer Support, said: “Knowing that you have an increased risk of developing breast cancer can be difficult to deal with, so today’s news about Anastrozole is…

Syed - Macmillan
Exercise and cancer: Questions and Advice from the Online Community

Physical activity plays a crucial role in the lives of those affected by cancer, whether you are currently facing a cancer diagnosis or undergoing treatment. In this blog, we’ll highlight some of the questions asked and advice given in our Online Community. Give it time and take it slow It can be tempting to get moving too quickly post-op, specifically once you start feeling better and with renewed energy. In a post-op scenario, one Community member was eager to get back on his Ducati, motorbike. He reached out to the Community for some advice. “Ok, it's now 7 days since my operation. I just wanted your thoughts on keeping fit. I'm busting to get out on my Ducati.” Community Member, Prostate cancer forum A few members of the forum were quick to reply with some…

Dylan - Macmillan