Community News - Macmillan Online Community

“One night I was woken up with an odd feeling.” – Alyson’s story

This week in Community news we’re sharing Alyson’s story and experiences with Renal cell carcinoma, a form of kidney cancer, from her first diagnosis to today. At the age of 20 years old, I emigrated to South Africa with my then husband Gerard. At the age of 40 years old I was working as a Logistics Manager for Howden Safanco and had been divorced for 2 years. I had by this time two daughters, Kimberley (16 years old) and Katherine (15 years old) and I was holding down a very busy lifestyle. "One night I was woken up with an odd feeling." I started feeling very tired and had a niggly pain in my right kidney, which I thought could be the start of kidney stones or something. I wasn’t one for running to the doctor all the time so I just put up with it. The pain wasn’t excruciating. One night…

Eliza -Online Community Team
Welcome back!

Welcome back to the Online Community! The new platform is now live, and we’re so happy to share it with you. So please take a look around! The site looks and feels different, but all your groups and content remain the same. When you log in for the first time, you will be prompted to reset your password for security purposes. Once you’ve reset your password, you’ll be able to log in, explore content and post as normal. If you’d like to find out more about why this upgrade has taken place, please take a look at our blog here . Highlights Bookmarks – you’ll now be able to “bookmark” and easily access specific discussion threads, groups or blogs Better search feature – searching for content on the site will now work more smoothly, helping you to get to the content you need quicker…

Eliza -Online Community Team
It's almost time!

Hi everyone, Last week, the Community team blogged about some important changes that are going to happen from Monday 27 th July. With only a few days to go before the upgrade, we wanted to reach out with a reminder about what to expect. We know how important the Online Community is to you and all our members. While this upgrade marks a new beginning for the Community, the site will still continue to be a source of comfort and support for everyone affected by cancer in the same ways it always has. Key changes and what to expect On Monday 27 th July , the Community will experience some ‘downtime’. This means that the site will not be available from approximately 9am-5pm. The site will then enter a ‘read only’ mode until Wednesday 29 th July. This means you will be able to view and…

Eliza -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
Pride - Supporting LGBT+ people affected by cancer

The month of June has been celebrated as Pride month for the LGBT+ community for decades. For the first time in recent memory, there will be no Pride marches across the UK this year. We didn’t want to let that stop us celebrating this important time, alongside recognising how much there is still to do to support equality. Macmillan and the Online Community are here for everyone affected by cancer, no matter how you identify or who you love. If you’re wondering why we’re talking about Pride, check out the Macmillan cancer information team’s blog post here . An estimated 1.2 million people in the UK identify as lesbian, gay or bisexual, while other estimates suggest this could be as high as 3.6 million. Macmillan’s Emerging Picture report acknowledges that accurate figures on sexuality and…

Eliza -Online Community Team
'Advice to Bureaucrats' by Michael

As lockdown is eased, yet shielding measures for many are extended, we wanted to share a poem with you from our guest writer Michael. ADVICE TO BUREAUCRATS It falls to you to draft a shielding letter Of weighty pages, not too clear, for someone Who has an underlying health condition, The relevance of which he may not know. Ensure you couch the information in Alarmist terms, including dicta aimed At other people rather than himself; Omit important pertinent personal details, Above all why he is included in This current noble process; for best results Print out a list of all diseases known To indicate great vulnerability Yet have no claim on his known dispositions; Don’t mention why the letter might be sent Well after start of lockdown, nor if the clearly Arbitrary…

Tom C - Online Community team
Let's keep talking...

In Macmillan’s cancer information blog back in November, featuring Men’s Health Awareness, we talked about how important it was to keep the conversation around men’s health and well-being flowing throughout the year. According to research, men often find it particularly difficult to talk about cancer, let alone ask for support. The Online Community provides an anonymous forum where people can come and talk about the physical, financial and emotional effects of cancer with others who understand. We know that talking to family and friends about cancer can be hard, so if you’re worried about how your diagnosis will affect them, or just need someone to talk to, the Community is here 24/7. Recently, through the guest blog series in Community news, we featured this lovely couple’s experience when…

Steph - Online Community Team
"I felt as though I was in a dream" - Janet's story

Today in Community news , we’re sharing Shaun’s story from his wife Janet’s perspective. If you missed Shaun talking about his experiences with head and neck cancer, click here to catch up. I always felt sad for anyone that had got any type of cancer, but nothing had prepared me for the long road to come. When my husband found out he had cancer in his left tonsil and lymph nodes, we were devastated. We came out of the hospital numb and in disbelief. We both cried together, but Shaun was definitely the stronger of us. I felt as though I was in a dream. Everything that followed would take me probably a year to write, because I have never known a man be put through as much. It broke my heart to see him so poorly. "I felt as though I was in a dream" After the diagnosis, there…

Eliza -Online Community Team
“Your help is tremendously appreciated” - a big thank you to Macmillan nurses and professionals

"We are still here for you.  Your treatments will still continue in the safest way that we can deliver them.  Your nurses, doctors and therapists are still working to provide you with the best standard of care.  We may talk to you over the phone now instead of bringing you in for appointments, but that telephone conversation is still focused around you.  Please contact your Nurse Specialist or medical team if you are worried – we are still here to talk to you and will support you in whatever way we can."    Alison, Lead Cancer Nurse We want to thank our Macmillan professionals every day for all their hard work supporting as many people affected by cancer as they can, but we think it’s best coming from you. In the current time, it’s more important than ever to show all medical professionals…

Eliza -Online Community Team
Cancer & Me 35 Years On – Vol 2 – Best Friends Forever

Flame lily (watercolour) by Willo Today in our Community News blog Willo is back with the second instalment of our new series called ‘Cancer & me 35 years on’ . In this series, Willo, known on the Community as patsyann85 , tells us about her experience of being diagnosed with Anal cancer in 1986 while living in Zambia. We will be sharing more of Willo’s writing and incredible artwork throughout the next few months in the Community News. If you missed Vol 1, 'T o begin at the beginning' , you can click here to catch up. Here is Willo to tell us more about today’s piece: Visiting a doctor at any time can be embarrassing, but when it involves anal examinations and biopsies – and two of the doctors concerned are people you meet socially, well, it doesn’t get much worse! That said, there is…

Former Member
Thinking about volunteering?

National Volunteers’ Week is a great time to think about whether it’s something you’re interested in doing. Volunteering isn’t for everyone or just might not suit your situation at the moment, and that’s okay. However, if you feel it might be something fun to do, volunteering can be great for our wellbeing. As a previous Macmillan volunteer, I want to bust some myths about what it’s like to volunteer and help you decide what’s right for you. Myth: Volunteering takes up a lot of time It’s a common misconception that lots of us think that we don’t have time to volunteer. Many people think of volunteering like having a part-time job, where you might be required to dedicate lots of time each week. However, it’s important to remember that volunteering is not a job. While a charity might ask…

Eliza -Online Community Team
'I appreciate everything I learn from you' - celebrating our wonderful Volunteer Specialists

This week marks Volunteers’ week here at Macmillan, it’s a time where we recognise and celebrate all of the amazing volunteers across the organisation. As part of this, in today’s Community news Blog, we are shining a light on our wonderful Volunteer specialists who dedicate their spare time and their expertise to answer your questions in our ‘ Ask an Expert’ sessions. To share a bit more about her experience of being a Volunteer specialist here on the Community is Lorraine, Lorraine is a Psychosexual Nurse Specialist and answers questions in the ‘ Ask about Sex (Men’s cancers)’ session. She is one of our team of 12 specialists working alongside surgeons, dentists, physiotherapists and other professionals to provide information and support to our members. Last year our volunteers answered…

Former Member

Awake and up all night?

We know that cancer can sometimes cause sleepless nights. Join our Cancer Chat forum for some company here in the 'Awake and up all night' thread.

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