Community News - Macmillan Online Community

Catching up with the Soft Tissues Sarcoma Forum

A cancer diagnosis can have a huge impact on you and your life, whether it’s your diagnosis or a loved one’s diagnosis. When you are diagnosed with a rare cancer, you may feel even more isolated. It can really help to find other people who understand how you feel and may have been through a similar experience. As part of Sarcoma Awareness Month this July, we want to highlight the Soft tissues sarcomas forum . This is a safe place to talk to other people, share experiences and find support. We want to help you find support if you or a loved one are impacted by soft tissue sarcoma. In this Community News blog, we’re going to feature some recent discussions from the forum and show you the topics that members talk about. Remember you can click the links underneath each post to go to the discussion…

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
Cervical Screening Awareness Week - how the Online Community can help

It's Cervical Screening Awareness week (17-23 June 2024) and in this recent article Macmillan have answered some frequently asked questions about cervical screening. With nearly 1 in 3 not attending their cervical screening test we also want to share where to find information and support if you’re worried about cervical screening or your screening results. It can be helpful to share any worries you have around cervical screening. You could talk to someone you know, to your GP or practise nurse. You can also chat anonymously with people here on the Online Community. Many Online Community members have talked about their fears around cervical screening, especially when they have been referred for further tests. "I had a routine smear this morning. After the nurse had finished she said…

Steph - Online Community Team
Super Surgeons- A Chance at Life

Did you watch series one of Super Surgeons on Channel 4? If so, you may be interested to hear that series two, Super Surgeons - 'A Chance at Life' , airs tonight on Channel 4 at 9pm. Macmillan is partnering again with Channel 4 for series 2 of the docuseries "Super Surgeons – A Chance At Life". The series follows patients having ground-breaking surgery at The Royal Marsden NHS Foundation Trust in London. Each of the hour-long episodes highlights the impact their cancer diagnosis has on all areas of their lives. The series features audio clips of calls to our colleagues on the Macmillan Support Line . You can watch the episodes on Channel 4 at 9pm on Tuesdays, from 18 June to 9 July. Or you can catch up anytime on Channel 4's on demand service All 4 . Also featured in the series are short…

Megan- Online Community Team
Support when you come home from hospital

When you come home from hospital after cancer treatment or surgery, you may need ongoing support. It can be hard to know what to expect. Recovery and the support you need at home can look different for everyone. Here in today’s blog, we’re sharing tips and experiences from Online Community members and helping you find the right support. Help from your hospital, GP or medical team Our webpage Going home from hospital talks about what to expect when you’re discharged from hospital. This includes support from your healthcare team to put a plan in place. This webpage also talks you through needs assessments, care plans and what your discharge plan may look like. Before you leave hospital, you may find it useful to use our hospital discharge checklist (PDF) – Find out more about this online…

Eliza -Online Community Team
Who do I ask? - How to find Trusted Cancer Information

Where to Get Trusted Cancer Information When you or a loved one is diagnosed with cancer, finding accurate and reliable information is crucial. With so many sources available, it's easy to feel overwhelmed and potentially come across misleading information. Here on the Community, we want to help you find trustworthy information that may guide you through your time of need. Getting accurate information about cancer can help you make informed decisions about your treatment and care. It can also provide reassurance and may help you feel more in control. But with the internet filled with so much information, how do you know what you can trust? Look for the Trusted Information Creator Tick One way to ensure that you're getting reliable information is to look for the Trusted Information…

Syed - Macmillan
Life after cancer: Navigating unique challenges with people who understand

On the 2 nd of June, Cancer Survivors Day invited us to celebrate life and raise awareness and support for people living after cancer. Life after cancer can be challenging for many individuals. It’s important to remember that you don’t have to navigate these alone. Macmillan and the Online Community are here to help. We have a dedicated Life after Cancer forum , for members of the Community who have finished treatment. It is a space to discuss things like the physical and emotional aftereffects of cancer, returning to work, or trying to move on with your life. In this blog, we'll focus on our "Life after cancer forum" and provide links to resources and helpful contacts. Feeling stuck A member of the Community was struggling, feeling stuck after living with a cancer diagnosis. They reached…

Dylan - Online Community Team
Dealing with Fear and Anxiety during Cancer Treatment

In this blog, one of our Community Champions Jane is sharing some of the emotions she felt whilst having treatment and some of the strategies she used to help cope with the uncertainty. Jane was diagnosed and treated for endometrial carcinoma sarcoma in 2022. She underwent surgery, chemotherapy and external beam radiotherapy. She became a Community Champion to support others who face cancer whether themselves or a loved one. She regularly supports others through the Online Community, reviewing content and by writing about her experiences. Having a diagnosis of cancer can make things feel overwhelming and out of control and it is normal to feel anxious about what lies ahead. Along with support from family and friends, that the peer support that can be found through Macmillan’s Online Community…

Megan- Online Community Team
Writing for healing

Have you thought about diarising your personal experiences? Lots of people find it helpful to diarise their own experiences, either by setting up a personal blog on the Online Community or by using a pen and paper. In this blog we will help you set up your own blog and share information about the benefits of diarising your experiences. How can writing help? Writing can be a powerful tool. It can help you express yourself in a healthy way and make sense of how you are feeling. People use writing for emotional healing as lots of deep emotions can be felt when being affected by cancer. Journalling and writing down your thoughts is a personal coping mechanism that can be used in daily life to support your mental health. “Have you tried journalling? I find writing it all out is…

Megan- Online Community Team
Telling your kids about cancer – experiences from the Online Community

Getting prepared Telling children about a cancer diagnosis can feel like you’re giving them a terrible burden to carry. Although it’s a conversation that no parent, guardian, or carer ever hopes to have with their children, it doesn’t always result in the negative impact we might assume. While there’s no right or wrong way to have this conversation, there are some general points to consider that may help you to have the most constructive conversations possible. The goal of this blog is to explore some of those important pointers by highlighting examples that members have shared with the Online Community over the years. If you or someone you know needs to share difficult news with children, we hope the quotes featured below will provide you with some inspiration, reassurance, and hope…

Matthew - Online Community Team
Breaking the news

Do you need help telling your family and friends about your cancer diagnosis? Read this blog for some friendly advice from those who have been there, it may help you break the news. This blog is a collection of lived experiences from our forums. We have gathered a collection of posts where members share how they told their family members and close friends about their cancer diagnosis. Talking about cancer It’s natural to worry about telling others you have cancer. Talking about cancer is probably something you never thought you would need to do, but now you find yourself thinking about how you are going to tell your family and friends you have cancer. It’s not easy starting difficult conversations but we are here to help. Who you tell is your choice and you shouldn’t feel any pressure…

Megan- Online Community Team
Feeling the need to scream and shout?

Did you know that today is known as National Scream Day? Who knew such a thing existed? It got us thinking about how helpful it can be to have a place to express how you are feeling. The Online Community is a safe space for you to talk about how you are coping with people who can understand what you are going through. "Well done for letting it out - we all need somewhere to let rip - you are in the right place - go for it... At the end of the day - there's always someone here for you - if you need that little bit of "extra help" you know where we are." Community member, 'This is pants' discussion thread, The Room Screaming is often associated with letting go of negative emotions and talking about how you feel when you are worried, stressed, sad and angry. Expressing…

Megan- Online Community Team