Community News - Macmillan Online Community

Dining with an Ostomate - "What I didn't find was any decent recipes for tasty meals..."

Debbie, known to the Community as Jersey Lily , is an Ostomate. She’s also a real ‘foodie’, so off the back of a temporary ileostomy earlier this year, she found it difficult to find tasty and suitable recipes anywhere. Debbie though powered through, adapting a few of her favorite recipes, and discovering new ones suitable for an Ostmate. This week Debbie’s shared with us a recipe for a fresh and health ‘Super Green Soup’, packed full of green goodness – but first, here’s Debbie to tell us a little more about her story… Before I was diagnosed, I was living a healthy lifestyle – eating all the right things, exercising regularly, getting plenty of sleep. I am not an anxious person, have little stress in my life (being able to retire early from teaching has been a real bonus), believe in positivity…

Former Member
Wellbeing Wednesday tips: February

In case you missed it, earlier this year we introduced ‘Wellbeing Wednesday's’ – the day of the week where we bring to you our weekly tip on improving your wellbeing; be helping improving sleep, coping with stress, or a couple of mindfulness tips to help you look for the positives throughout the day. It’s last day of February today, so here’s a summary of our tips to date: Mindfulness: Mindfulness is the basic human ability to be fully present, aware of where we are and what we’re doing, and not overly reactive or overwhelmed by what’s going on around us. Mindfulness is a skill. It requires work like any therapy and practice like any skill. You can find out more on the MIND website here . What was good about your day? Finding the good on the bad days can be hard. Trying to find…

Former Member
I forgot to be ME

Lindsay, known to much of our Community as Leolady56 , has been an avid member and Community Champion for a couple of years now. Just a couple of months ago I discovered that outside of the Community Lindsay’s involved in a fair few rather interesting hobbies – something you’ll shortly read about further. In addition, she’s also the founder of the ever popular Walking back to Happiness thread, where members share their walks, or any outside excursions they might’ve recently been on with the group. Given this, I thought it good idea to ask Lindsay about her hobbies, and how they helped her cope with cancer. The response? These hobbies reminded Lindsay to be herself. You are all going to have to forgive me for a few sentences.......You see the; ‘I forgot to be ME’ started a long time ago. …

Former Member
'The outcome is still unknown but I am glad that I don't have to face this ordeal all alone' - My journey through Breast cancer in verse and word - Vol 1

Today we are really pleased to welcome a new guest blogger for the Community News, Amanda-Jayne. Amanda-Jayne was diagnosed with Breast cancer in June 2019 and used poetry and journaling to diarise her experience throughout. Amanda-Jayne has very kindly sent through her poetry and writing to us here and we are going to be sharing it with you over the next few weeks. So, here is volume one of Amanda- Jayne’s journey through breast cancer in verse and word. Amanda-Jayne with her husband Tristan, and parents in law, Sharron and David. Little Tinker Just a little while ago tinker came to stay, Hope she doesn’t get comfy Wish she would go away. She sits there just beneath my skin Knows there’s nothing I can do, 'She can’t hide from the doctors For her they’ll see right…

Former Member
"So why are pets great? Because without them, I don't know if I'd still be here, and if I were I'd not be as upbeat as I am!" - why pets help us and our wellbeing

This week, we’ve been asking the Community about the benefits of pets. We’ve really enjoyed putting this piece together and it’s clear to see our pets mean so much to us. They can be our most loyal companions, our shoulder to lean on and an ever-lasting source of comfort and love. It’s been so lovely to see all of the responses we received and I’ve no doubt you’ll all love them too. "...the crazy cockapoo welcome I get on my return from work is the perfect antidote from the strains of the most stressful day." 'We had never had a dog before and had always planned to get one when we retired. Retirement plans were sadly brought forward for us upon my husband's diagnosis 4 years ago but we decided to put our retirement plans into action instead of on hold and we found our adorable Milo. Milo…

Ellen - Macmillan
"I have always thought that giving up is not an option, it's more of a stepping stone to what is next" - thoughts from our Community Champion, Mike

Last week on the Community, we spotted this response from Thehighlander , one of our dedicated Community Champions. We couldn’t help but share it, it epitomises the very essence of peer support and that’s what the Community is all about. Enjoy… On the 10th May 1999 I was told that I had a rare type of Skin Lymphoma, so for over 20 years I have lived all the levels of acuity and stress so do understand the 'low' moments a cancer diagnosis brings... what did I do to overcome them? 20 years back I was told that my condition would 'get' me at some point in time, someday, some year but with no calendar... I very quickly come to realise that I could not let my condition define me. A good consultant friend told me very early on in my diagnosis that "all the stress and worry in the world would…

Ellen - Macmillan
"Thank you all so much for sharing your journeys" - thanking all of you, our Community members

We wanted to take some time today to really focus on thanking each and every one of you for the support that you all give on the Community. Below are a few of many examples of the ways that members of the Community provide truly wonderful support to each other every single day in what may be an incredibly difficult time. Why not take a look through? 'You have found this amazing support group and there is always someone here to answer your questions no matter how trivial you may think it is. ...someone somewhere may have been through exactly the same at some point.' - Madesp "...there is always someone here to answer your questions no matter how trivial you may think it is..." 'No matter how much friends and family try to comfort you they will never truly understand how you feel. This…

Ellen - Macmillan
'My husband reassured me that I was more of a woman for finding the bravery and strength to face my fate head on...' - Understanding BRCA by Clarissa

'The emotional journey of coming to a decision to undergo risk-reducing surgery.' By Clarissa. As many of you may be aware October marks Breast cancer awareness month. This is a month of raising awareness and funds for a variety of breast cancer charities that provide lifesaving research and support to people affected by breast cancer. As the month draws to a close, we are pleased to have as a guest blogger in today's Community news, Clarissa, author of ‘ Understanding BRCA .’ Clarissa carries the BRCA2 gene and has written a blog for us today about her experience of making the decision to undergo risk- reducing surgery. Why not take a moment to read through Clarissa’s story? Clarissa, author of 'Understanding BRCA' After learning that I carried a harmful BRCA2 gene mutation…

Former Member
‘I felt so much love and support from my fellow carers that sometimes my screen was in danger from the wet of my tears! - What the Community means to me…Vol 3: moomy’s story

A very Happy New year from everyone on the Community Team, we are excited to kick off the year on the Community News Blog with the third volume in our series ‘ What the Community means to me…’ This series highlights just how much support, friendship and kindness is shared on the site every day. Today moomy shares her story, why not take a moment to read through? Missed the last instalment? You can click here to read Johnty and popgate’s stories. ‘I’m really called Helen. I know, the onsite name isn’t my real one! I joined the Online Community so many years back that I’ve seen it change a few times. I’m not even sure quite how long ago it was that I joined. It was then organised into two main groups, ‘General’ and ‘Chat’. I posted a question in ‘General’ but looked across at ‘Chat’ and saw…

Former Member
‘It’s a great comfort food’- Dining with an Ostomate: Fish pie

Debbie, our wonderful 'chef to ostomates' is back today with a delicious warming Fish Pie recipe, perfect for cold winter nights. All of Debbie’s recipes are, of course, designed with Ostomates in mind and in case you’ve missed any of her recipes to date, you can find them all in our Ileostomy, colostomy and stoma support group. So why not put an apron on and get cooking! 'This Fish Pie is another family favourite and is one that I have used many times over the last year as it’s a great comfort food.' Omit the onions if they upset your stomach. I never use cream, always milk and this has the added benefit that it freezes well. I often divide this into three portions and freeze two in foil containers. I usually defrost them before reheating for 30 minutes but you can reheat from frozen,…

Former Member
Planned maintenance - Tuesday 10th November, 7am-1pm

Hi everyone, Due to some planned maintenance on the main Macmillan website, www.macmillan.org.uk , the Online Community will enter a read-only mode between 7:00am and 1:00pm on Tuesday 10 th November. This means that you will not be able to log in, post or reply on the Online Community during this time. You will still be able to read posts and blogs on the site. If you feel you need some support while the Online Community is unavailable, please remember our Support Line is here for you. Our teams are available 8am-8pm, 7 days a week on freephone 0808 808 00 00 , or by email or webchat . Thank you for your continued support and patience as Macmillan continues to update and improve our online services. If you have any questions, please don’t hesitate to get in touch with us at community…

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

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