Where do you find support online?

Hi everyone, 

It's Eliza from the Community team. Finding the right support for you when you're going through an experience with cancer is really important. We're interested to know whether you use other support groups outside the Online Community. 

You'll see the poll below this post, where you can vote to let us know. 

Making the Online Community better for you is at the heart of everything we do. If you'd like to talk to us to offer feedback about the Online Community, please remember you can email the Community team at any time at community@macmillan.org.uk

Anonymous
  • I find Wessex Cancer Trust a great support. Before Covid shut everything down I used to drop into my local centre for coffee and a chat. They set up Zoom sessions, which were especially helpful during my 20 week enforced lockdown because they were twice a week half hour real chats. I live on my own and it was good to talk to people I could actually see and hear - even just through a laptop webcam and mic. They have a Facebook page too.

    Online forum groups are fine but they're necessarily somewhat distant and remote because, although everyone here is friendly, there's a delay in getting a response. This forum is great for asking medical questions which I forget to ask my consultant during the phone consultations I have with her but the Zoom meetings gave me an opportunity just to TALK to people - and not just about our problems. We could have a good laugh and we all felt better for it.

  • Not so much now because I'm now getting out and about - at least walking around town and taking photos to post on my Facebook page and those of the photography groups I belong to on Facebook - but during my 20 week enforced lockdown I found a lot of support from the Zoom chats I had with befrienders from Wessex Cancer Trust. I used to drop into their centre regularly for coffee and chat before Covid shut everything down but Zoom was a great solution. I live on my own and even half an hour once or twice a week of chatting was good for my morale. They also have a Facebook page so I can "chat" to them there as well.

    I find this group good for asking more medically specific questions relating to my condition (Lymphoplasmacytic lymphoma) but not so much for emotional and personal support. People here are kind and understanding but the online forum format means that there is a delay in responses to posts and I don't have the instant feedback of actually talking to people - even virtually.

    I'm not having treatment at the moment - I'm just on "watch and wait". I have a phone consultation with my consultant in a couple of days time so she'll tell me the results of my latest blood tests. Last time I talked to her (a couple of months ago) she said that I was "relatively stable", despite some levels which have gone up which shouldn't have and some which have gone down that shouldn't have, so she's reluctant to begin treatment unless it's absolutely necessary. I find it difficult to talk to her over the phone so, as I said earlier, this group helps with some of the medical queries I have but from a morale point of view it's much better to actually TALK to someone because we can have a real conversation and talk about other things than our medical problems. 

  • I’ve received so much support from Macmillan. I would be lost without them.I was just diagnosed three weeks ago with breast cancer.

  • Don’t think I would have got through this journey without the lovely people on womb cancer forum. The online community has been a massive support and help.

  • Hi everyone,

    My name is Rachel and I work as part of the Community team along side and I just wanted to thank you all for your comments and for letting us know the where you find support online outside of the Community.

    All your comments and responses are very useful and will help us to shape the Community going forwards and make it the best place it can be for our members.

    If you have any questions or ever need any support, please don’t hesitate to get in touch with the Community team by emailing community@macmillan.org.uk.

    Kindest regards,

    Rachel
    Macmillan’s Community team

  • Hi ,

    Thank you for your comment, I hope you don’t mind me responding today, my name is Rachel and I work as part of the Community team here at Macmillan. I was so sorry to hear from your post about your cancer diagnosis and everything you have been through. I’m also sorry to hear that you have found it difficult to connect with others online about this.

    The Community is a place of peer support and, if you did want to interact with others about anything you may have been through, the best place to start would be to post in one of our ‘Discussion groups’ about your situation. Our discussion groups are divided into Cancer types’ and ‘Cancer experiences’.

    We have a discussion group for those who have been affected by ‘Oesophageal cancer’ as well as our ‘Cancer surgery’ group that you might find helpful to post in. We also have a group called ‘Life after cancer’ which is for those who have finished treatment, which you may also find useful. I hope that you find these groups a source of comfort and support at this time.

    I hope this information is useful but if you have any questions, or ever need any support, please don’t hesitate to get back in touch with the Community team by emailing community@macmillan.org.uk.

    Kindest regards,

    Rachel
    Macmillan’s Community team.

  • Hi

    Thank you for your comment, I hope you don’t mind me responding today, my name is Rachel and I work as part of the Community team here at Macmillan. I’m glad to here that you have previously found the Community to be a source of support and that you felt well supported by our members.  

    I was sorry however, to hear that you were not able to navigate the site or access tech help after the recent upgrade Jenny. I can appreciate that sounds frustrating and, though I am glad that you are now back on the site, I can appreciate how it might cause anxiety to post after not being on the site for a while.

    We applied the Community upgrade based on members’ feedback, as making the site better for you is at the heart of everything we do. We know that sometimes these changes can cause issues, but long term they will help to provide a more stable and better functioning site for everyone.

    I hope that you feel more comfortable navigating the site soon and do know that if you have any questions, or ever need any support, you can contact the Community team by emailing community@macmillan.org.uk.

    You may also find it useful to have a look at our new and updated ‘Help section’. Here you will find our ‘Help pages’, ‘FAQ’s (or frequently asked questions)’, and our ‘Help group’ where members can post any technical questions they may have and a member of the team will aim to respond within two working days.

    I hope that the above information is useful but please don’t hesitate to get in touch with the team if you need any further support.

    Kindest regards,

    Rachel
    Macmillan’s Community team

  • Hi

    Thank you for your comment, I hope you don’t mind me responding today, my name is Rachel and I work as part of the Community team here at Macmillan. Thank you for sharing your experience of who you turn to for support online outside of the Online Community, I am glad to hear that you have such a good family support network.

    I am also glad to hear that you are interested in volunteering with Macmillan. Thank you so much for your interest and for taking the time to look into volunteer roles. I’m sorry that you haven’t found any volunteering opportunities in your area, the best place to find the most up to date information about volunteering roles is in our ‘Volunteering village’ on the Macmillan website.

    If you are interested in volunteering here on Macmillan’s Community, you can also find out more about our Community Champion Volunteer role by clicking here.

    I hope this information is useful but if you have any questions, or if you need any support, you can email the team at community@macmillan.org.uk

    Kindest regards,

    Rachel
    Macmillan’s Community team

  • Hi

    Thank you for your comment, I hope you don’t mind me responding today, my name is Rachel and I work as part of the Community team here at Macmillan. I’m so sorry to hear about your mam’s diagnosis and everything you are going through at this time, it sounds like a lot to cope with and I am glad that you have reached out for some support.

    The Community is here for you as a safe and supportive place online where you can speak to others who may have been through a similar situation for peer support. You might find it helpful to post about what you are going through in our Head and neck cancer’ group, or our ‘Family and friends’ group. Here on the team we see every day the benefits of peer support, so I hope you find these groups to be a source of comfort.

    If it helps to talk, Macmillan also have a ‘Support Line’ that is open 7 days a week from 8am-8pm. Our Support Line teams are here for you at this time – even if all you need is a listening ear. That number is 0808 808 00 00, or you can live chat to an adviser via our webchat facility during these hours by clicking here.

    I hope that the above information is useful but if you have any questions, or ever need any support, please do get in touch with the Community team by emailing community@macmillan.org.uk.

    Kindest regards,

    Rachel
    Macmillan’s Community team

  • I find a wealth of information for Bile Duct Cancer on Facebook private groups. Not only is there a dedicated group for Cholangiocarcinoma but also for immunology and targetted therapy. There are both international and UK & European groups. 

  • The sites I trust and find very helpful are this MacMillan Community and Cancer Chat on the Cancer Research website. But what has helped most has been highly-professional hypnotherapy via Zoom from the Olive Tree Cancer Support Centre. Because I have a good chance of two-year survival, I told my medical oncologist in the final appointment after treatment ended that I need to find work I can do as the fatigue means I can no longer work with lively teenagers.Tm He told me that the charity Olive Tree Cancer Support Centre can help with web-based mentoring. They offer various types of mentoring and I am very glad I chose hypnotherapy. I'd never have considered this before (e.g. I refused hypnotherapy during childbirth and tooth extractions), but reading the description of it on the Olive Tree website made me realize how helpful it might be. And it was. It has changed my life in wonderful ways I had not thought possible. And now that the sessions have ended, I use the training the hypnotherapy gave me for self-hypnosis for twenty minutes every day. By the way, they work with all relgions/ faiths and none and if you have a religion/ faith it's fine to combine that with the therapy. I'm a Catholic Christian, and this was very important.

  • We have a ‘Men’s Group’ run by our local Hospice. Used to meet every Friday but now only on Zoom once every two weeks.

  • When 1st Diagnosed and struggling to work out what next (in Thailand) Cancer Research uknurses on line were just brilliant. Speedy, professional, infornative. Now I tend to use Mayo and Cleveland websites for late effect chemo info. And I try to offer support to others on Macmillan 

  • I have a rare cancer so my facebook group for my specific cancer is my main source of support.

  • As someone who has been with Melanoma support for twenty years, I find the patient group on Facebook invaluable.