Community News - Macmillan Online Community

A period of change

This month we start to see the changes from Summer to Autumn. We know this happens every year but unexpected changes like a new symptom, side effect or waiting for test results, can bring a lot of uncertainty and make us feel uneasy. We often discuss change on the Community. How we see change depends on who we are and our current situation. It may be forced upon us or something we are expecting, but either way we have to adjust. What we see on the Community is how you respond to change matters. You may not be able to control what is happening to you, but you can control how you react. Being there to help each other can be comforting and empowering. “People have different coping strategies. I very much wanted to know as much as possible from reliable sources so I could make informed choices…

Megan- Online Community Team
Fixes and issues - an update for members, September 2020

Hi everyone, We want to say a huge thank you for your continued feedback and your patience since we upgraded the Community. We have been escalating all issues that have been reported and we are listening to all of the feedback we’re receiving. It has been really helpful for us to understand how you feel the site is working and what we can do to improve. We know the Community is a lifeline for many of our members and we know how important it is to be able to reach out to get support. Below is an update on where we are with some of the issues on the site. If you have any questions about the below then please don’t hesitate to get in touch with us on community@macmillan.org.uk . 1. Email notifications temporarily disabled Last week, we had to temporarily disable email notifications…

Ellen - Macmillan
Signatures are back

Hi everyone, We are happy to say that signatures will be back on the forum. We know how important these are for our members and we received a lot of feedback from you telling us you'd like to see them underneath each of the posts you make. Signatures will now appear underneath every reply, but not underneath the original post (the post that starts the thread). This is the only way we can configure signatures in the new platform. We're happy to have these back up and running on the site and we'll look to release this at 1pm. If you have any questions, please don't hesitate to reach out to the team on community@macmillan.org.uk Best wishes, Ellen

Ellen - Macmillan
Temporarily disabled email notifications

Hi everyone, Last week, we used a feature to send an email notification to all members to let them know about our update on the site upgrade . You may have seen the below email in your inbox: Unfortunately, due to a technical glitch, this email is being sent to users multiple times. Because of this, we have had to temporarily disable email notifications from the Community. This means users will not receive any email notifications from the Community. We have raised this as a critical issue and this is being looked into as a priority. We're really sorry for any inconvenience this has caused and we hope to have email notifications up and running shortly.

Ellen - Macmillan
Viewing groups - which do you prefer?

Hi everyone, It’s Ellen here from the Community team. We are hoping to get your thoughts on a change we are thinking of making to the way you currently view groups. We’re looking at making this change based on some of the feedback we’re seeing across the site, and within the feedback survey. You’ll see a poll below this post, where you can vote for what you like best. Currently, when you go to your group, you see a list of discussion titles. This is shown in picture A below. This view allows users to see the title of the discussion, but they need to click into the discussion to see any of the posts there. The other option we have is to change this view so that when you go to your group, you see the latest activity within the group. This is shown in picture B below. This view allows…

Ellen - Macmillan
Community upgrade: an update for members

On 29 th July, we launched an upgrade of our Community site. The changes we have made are to ensure that the Community is working on a much more stable platform so that our users encounter less technical issues and that we can grow and develop the Community in a safe and well-supported way. We are not where we had hoped to be since launching the upgrade. We are working through a list of bugs and issues which we did not expect to see and these are taking much longer to resolve than we had hoped. We are grateful for all of the feedback we are receiving from our Community and we are listening. We have been escalating these issues and logging each and every one to ensure that we are capturing as much feedback as possible. Survey Results We recently launched a survey, asking our members…

Ellen - Macmillan
Planned maintenance - Thursday 10th September, 6am-10am

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 6:00am and 10:00am on Thursday 10 th September. The main Macmillan website (macmillan.org.uk) will also be unavailable from 6:00am-10:00am. This means that you will not be able to log in or post 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 patience as Macmillan continues to update and improve our online services. If you…

Eliza -Online Community Team
Cancer & Me 35 Years On – vol 4 – Brachytherapy – (the Radium Needle Implant)

Today in our Community News blog Willo is back with the fourth instalment of her guest blog 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 3 – The journey home , you can click here to catch up. My younger son spent as much of his Easter holidays with me as was possible and we travelled far and wide together, spending several days in London with friends who drove us all around the sights - and we also saw Les Miserables from the cheapest seats up in the gods, looking down on the heads of the company,…

Former Member
Dining with an Ostomate - Golden goats' cheese, beetroot and squash salad

We are really pleased to be back this autumn with another instalment of our ‘Dining with an Ostomate’ series. Today we are sharing Debbie’s recipe for golden goats’ cheese, beetroot and squash salad. Debbie is our wonderful ‘chef to Ostomates’ and all of her recipes are, of course, designed with Ostomates in mind. In case you’ve missed any of her recipes to date, you can find them all in our Ileostomy, colostomy and stoma support group here . So why not put an apron on and get cooking! I often make this when I have left over squash, and halve the recipe to make a more substantial main course for two people. If you have an ileostomy, omit the pumpkin seeds. Beetroot may change the colour of your output so don’t be alarmed! Omit the salad leaves if you can’t digest them easily. Golden Goats…

Former Member
Planned Community Maintenance - 11th August, 7am-10am

Hi everyone, We’re writing this afternoon with an important update. Tomorrow morning, Tuesday 11 th August , the Community will be entering a read only state from 7am until 10am . This is to allow us to fix two issues that we know users are experiencing just now. This maintenance will fix the below: Logging in issue where users are receiving the error message ‘the user already exists’. See below a screenshot of the error message: Being logged out every 30 minutes or so. Whilst in a read only state, you will still be able to view the Community and read all of the discussions on the site, but you will not be able to log in or post. The main Macmillan website (macmillan.org) will also be unavailable from 7am-10am. If you feel you need some support in the meantime, please remember…

Ellen - Macmillan
Cancer & Me 35 Years On - Vol 3 - The Journey Home

Fantasy (batik) by Willo Today in our Community News blog Willo is back with the third instalment of our 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 2 – Best Friends Forever, you can click here to catch up. It was early February – still hot when I flew from Lusaka to winter in Germany, where I had to catch a connecting flight. When we reached Frankfurt the pilot announced it was minus nine degrees, but with the wind-chill factor it was -16°. The passengers gasped when the doors opened and the cold…

Former Member
“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

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