Community News - Macmillan Online Community

New Beginnings

As we find ourselves somehow in 2022, people affected by cancer have been through an awful lot in the last few years. The coronavirus pandemic continues to change peoples’ plans and of course has impacted the health and freedom of many. After such difficult times throughout the last few years , finding fresh energy for the new year and hope for the future is arguably harder than ever. "I am trying to put it all into perspective but it’s hard." - Community member, Neuroendocrine cancer forum "I’m not sure if things ever return to the normal we knew before we were diagnosed but I guess we learn to live with the new normal and hopefully as distance opens up between past treatment and scans we get a new perspective and it isn’t as all consuming as it once was. Fingers crossed that’s the case."…

Tom C - Online Community team
Naveed's story living with a rare heart cancer

Naveed and his wife, Naveen, talk in their mother tongue, Urdu, about Naveed's diagnosis and some of the stigmas still prominent in their community. This video is part of Macmillan’s mother tongue project, (4 minutes and 19 seconds). We hope to feature different lived experiences here on the Online Community to represent different ethnic cultures and communities, so nobody feels they are facing cancer alone. Please see an English transcript written below. There are also English subtitles available when watching the video. For additional support information in other languages, scroll to the end of this blog page. Naveen : “Because treatment was so delayed, it felt like at any time, it could be his last night or last day for us. So that was incredibly hard. I wish I was stronger at…

Megan- Online Community Team
Technical problems on the Community

As you may be aware, the Online Community wasn’t quite working this morning (20 June). The Community is now back up and running and should be working as normal for everyone. We're so sorry for any inconvenience this may have caused as we really understand that the Community is an important source of support for many members. If you are continuing to have any technical problems, such as being unable to post on the site, please let the Community team know via email to community@macmillan.org.uk . Please note we might not be able to fix all technical problems immediately. However, we’ll do our best to help everyone as soon as possible. If you’re having any issues accessing the Community and would really like to talk to someone for some emotional support, please remember you can contact our…

Eliza -Online Community Team
Top tips for self care

This week’s Self Care Week, a week that focuses on embedding support for self-care across all walks of life. To recognise the week, our fantastic Social Media team have tweeting their top tips on looking after yourself. We’d love to hear yours too, so go ahead and share them in the comments below. If you're finding things tough, it can help to take things one day at a time and not look too far ahead. You may find that things get easier to cope with as time passes. Doing even the smallest tasks may help you feel better. If you can, get up and dressed every day Try to eat well every day. If you have eating problems or a poor appetite, talk to your doctor or nurse. Try to exercise regularly. Keep to a regular sleeping pattern if you can. Stay in contact with your family and friends…

Former Member
Cancer & me 35 years on - Surgery at St. Mary's

Today we are back with the 13th volume of our longest running Community News Blog series ‘Cancer & me 35 years on’. Willo was diagnosed with Anal cancer in 1986 while living in Zambia. In this blog series Willo has been sharing her experience of living through and beyond cancer. Alongside sharing everything she has been through, Willo has also been sharing the amazing artwork she created during this time in her life. So far, Willo has covered her experience of moving back to England for treatment, her Abdominoperineal Resection , going back to art school p ost-surgery and the amazing friends and family that helped her through. In today's blog, Willo talks about a very important, and often very difficult time in anyone’s cancer experience, waiting for results. We are back with Willo today…

Former Member
Dealing with a teenager’s cancer diagnosis: Mandeep and Jai’s story

A cancer diagnosis can impact the whole family. As a father, Mandeep shares his experience of his son Jai’s cancer diagnosis in the hope of helping more families who are going through the same experience. Transcript Mandeep: I just remember looking at his face and I just saw him as a child. You could tell he was scared. It was as a parent, soul destroying. There’s never a nice day anyway to be told that you have cancer but, on your birthday, that is probably a birthday that we will never forget for the wrong reasons. If you look back at the photos from his 17 th birthday you can see it’s not Jai. He’s not his smiley self. He is a 17 year old lad, cutting his cake and at the same time, he’s got a real rough road ahead of him. They were saying that he will definitely loose his hair…

Megan- Online Community Team
"I once had a pub lunch with Judi Dench..." - Meet the Champs: MikeO

Following on from last month's 'Meet the Champs' Q&A with Greg777 , this month we meet MikeO , who you'll find Champing our Head and neck cancer group . Enjoy... How long have you been using the Community, and what brought you to the site? I found the Community not long after my diagnosis in October 2013, after a bit of manic Googling had got me terrified for my prospects I calmed down and looked for a more balanced view. I've always been a big user of internet forums since first taking the plunge into the computer age in 2004 and I'm active in several, travel based some of them but mostly an Everton football club forum that I'm a co-admin on (somebody has to do it). Not a fan of social media in the Facebook or Twitter sense but I like to get to 'know' people on forums so the Macmillan…

Former Member
September Community Catch up

Let’s take a look back at what’s been happening on the Community over the last month. Not everyone is logged onto the site everyday and with so many people coming to one place to access support, it can take some time to catch up with what’s been going on over the past few weeks. This month we welcomed 2,041 new members to the Online Community. With more and more people joining the site, we are seeing more people share experiences. Cancer patients, loved ones and carers posted 3,147 replies which shows how much support is offered from you, our members, every day. There are many different reasons for visiting the Community, but once you're here, you’ll find that you’re not alone in dealing with your situation. There are thousands of people sharing their experiences and offering a comforting…

Megan- Online Community Team
Meet Mr U - self advocating through cancer treatment with a pre-existing heart condition

Image by Mr U - The famous 'Mr Vicious' who features throughout Mr U's blog Community member Mr U was diagnosed with metastatic prostate cancer in 2022. He also has a pre-existing heart condition, making treatment more complicated. In his Online Community blog ‘ To hop-on or hop-off is the question? ’ Mr U has shared his story of self-advocacy through treatment and pushing for better outcomes. Self-advocacy means actively speaking up, asking questions, and making informed decisions about treatment. Dealing with different hospital departments and trusts, whilst trying to remain positive isn’t easy. Mr U shares how he has coped, whilst staying strong for his wife 'My Darling' and family. “Where do I even start to explain the everyday pain of self-advocacy?" Today I’ve written around…

Steph - Online Community Team
"I saw that I wasn’t alone": The power of peer support when caring for a loved one with cancer

March is Brain Cancer Awareness Month. We want to take this opportunity to highlight our Glioblastoma Multiforme Brain Tumour forum and Brain cancer forum . These are safe spaces for people affected by brain cancer, to find emotional support, discuss treatment and share experiences In this blog, we hear from Chris ( Branoc ), who joined the Online Community shortly after his wife was diagnosed with an aggressive brain tumour. He later became a Community Champion, supporting other members affected by brain cancer for 2 years. Here, he shares some of his story and explains why he believes peer-to-peer support is so important for those affected by cancer. My wife was diagnosed with a glioblastoma (an aggressive brain tumour) in June 2022. I immediately wanted to find out everything I could about…

Dylan - Online Community Team
Ovarian Cancer Awareness Month

March is Ovarian Cancer Awareness Month, so to recognise this I’ve been speaking with three members of our Ovarian cancer group, and asked them to share with the Community a little about their experiences, and any tips they might have on coping. If you’ve had any thoughts or an experience with ovarian cancer you’d like to share, go ahead and do so in the comments section below. 'My main difficulty was telling people I loved...I felt guilty...' Posie: “My diagnosis came at the beginning of November 2018, and it was a shock. I attributed many of the symptoms I was suffering to the ageing process and long walks with our new puppy. Once diagnosed things moved very quickly as I was on the two-week plan, no appointment should take longer than two weeks from request to seeing a health care…

Former Member
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