World Cancer Day - what does the Online Community mean to you?

I would encourage people to join this supportive online community.I joined back in July 2019 after being diagnosed with bladder cancer.I was very ill back then and not able to sleep because of pain.I found the awake thread in the breast cancer group first.The adventures of their virtual guinea pig Lucky Pants cheered me up so much.I was scared at the thought of major surgery but soon received advice and support from the bladder cancer group.Their support helped with recovery during the pandemic and the death of my mother.It’s good to be able to help support others now.Being a member of this community means a great deal to me,Best wishes Jane 

I have been around for 3 years here on a Prostate Cancer journey. I am married to a nurse but even though she knows the technicalities and mechanics of cancer - she just doesn't get it.

Cancer is a "bond" between people who have it / have had it - unless you've "been there - got the T- shirt" it's hard to understand. We DO understand what people are going through. We KNOW how their emotions are affected. We WORRY about test results and our diagnosis but most of all we CAN and do support one another.

The online Community was there for me when I didn't understand my diagnosis, when I was confused about my treatment, when the side effects of my treatment kicked in - but most of all I confessed when I was having a bad time of it - and they were there for me.

I am at the end of a "Curative Pathway", yes I have a good chance of needing treatment in the future - but at this point - that's the future. Why am I still here? The answer is at the start of my journey - and in the early stages I was like a rabbit in the car headlights and I don't wish that on anyone. The Community helped me on my journey and I am giving back what I have had out, not only that I have made some very good friends here.

If I were to invite someone onto the Community (something I have actually done) I would say "we are a great diverse bunch, all with the same aim - to have a successful cancer journey - you will get the support you need and whatever issues you may have you will not be judged".

So to all you out there who have been there for me (and I am sure you know who you are) a big THANK YOU. Without you and the other Community members it wouldn't be OUR Community.

Kind Regards and Best wishes to all - Brian.

Well said Brian.My partner is brilliant but he is glad that I have friends here that understand.Jane x

'Sadly,' I joined the community in October 2023, the sad part being,  I wish I had joined in June 2022, when diagnosed.

Having been in healthcare for 15 years, 5 in palliative care,'95% of which was cancer care', looked after 3 members of my family who we lost to cancer, living, and occasionally dying, from heart issues, I thought I was well equipped to manage when diagnosed with terminal cancer, I was wrong.

I'm sorry to say, I don't remember how I ended up on the community, but I'm so glad I did, and from my very 1st post, answered by some wonderful guys and girls on the prostate forum, including Brian (Millibob), thank you Brian, it's helped me so much on my journey, and I would like to think, I  have helped others too, as for all we hate this awful disease, I see everyone on the same journey as family, 

I now reside mainly on the LWIC forum,  with the most amazing group of people on the community, who despite going through some very difficult times will always offer support to others,  I have become close to many on the forum and meet up with a few who have become close friends 

I am always happy to encourage others to join the community, a councillor friend of mine, asked me to help start a metastatic group at a local cancer charity in March last year, with the hope of  expanding it across the region in time, with the help of a local university, during talks with the university about the focus of the new group, they were shocked to learn from me and a fellow incurable friend, how poorly  you are equipped to deal with cancer after diagnosis, and my friend and I both said we would have loved to have known about the community then, and it would have helped enormously, the promised to look into it, I  know these things take time, but I'm happy to say  the metastatic group is up and running, and everyone on it is told about the community.

I also do talks encouraging guys to get a PSA test,  or more usually,  getting their partners to encourage them, I have done 15, talks, to about a 1000 people, and always talk about the community, so at least they are aware of it,  and to date 107 guys have had a PSA test 

I would like to finish by thanking Macmillan, the moderators 'for putting up awith me," the community champions for all they give and my fellow warriors who's fighting spirit will one day rid us of this awful  disease 

love Eddie xx 

Good Morning Jane (winkers60) 

It's something I have discovered as my journey has progressed. People I meet who have cancer are easier to talk to about my/their diagnosis or journey as they "get it" and understand everything about it. "Outsiders" just don't and their reactions, "help" and understanding can sometime be embarrassing. 

Kind Regards - Brian x

I joined the prostate cancer group about 15 months ago, but wish I had known about it at the start of my cancer journey 7 years ago, when the future seemed so bleak and we felt on our own.  I can recognise myself in many of the posts from newbies and the group are so unbelievably supportive to new and old alike.  I have learnt much more about prostate cancer and the options available from other posts and it has helped me in making choices for my own treatment.  The group (including many partners) led by Brian, are a great bunch, nothing is off limits (within the Guidelines) and I would encourage anyone on this journey, at whatever stage they are at, to pop in and check us out.  Thanks MacMillan for your support.

I first joined the lung cancer community in 2014 when I was undergoing tests, I'd already concluded that I had lung cancer and unfortunately was proved right after tests were concluded. I was petrified at the time having lost several relatives and close friends to the disease and wanted to get as much reliable information and reassurance as I could, finding members at the time to be a great source of help and inspiration. I had surgery then chemotherapy and am delighted to say that, so far, all has been OK since despite a few scares. 

Fast forward to 2016 when I was diagnosed with prostate cancer purely by chance as a result of a lung cancer surveillance PET scan so I joined that community and again found it invaluable for reliable information, wise advice and inspiration. I had HT and RT with everything being well until early 2024 when my PSA level exceeded the magic 2.0 with further tests confirming recurrance. I've since had chemo and am on 2 indefinite HT treatments being unfortunately incurable but treatable. Again I was able to lean on community members for information and inspiration which was, and continues to be, invaluable.

I am not a prolific poster but when whenever I see a post or questions that line up with my own experiences I do offer comments which are hopefully useful. It is important to give back wherever you can. In addition to my main cancer "interests" I also follow Cancer Chat, Life after Cancer, The Room and Travel Insurance and participate when I think I have something useful to say.

There are other cancer community networks around which, although very informative, don't come anywhere close to those on Macmillan which I firmly believe are the best due in large part to members, community champions and of course the organisation itself. My journey would be considerably more difficult without it.

Hi Brian,Yes it is so much easier talking with people who have been through a similar experience.
I’m very grateful to Macmillan for all the work they do and for having this helpful online community.
Jane x

I joined the Prostate Cancer forum when first diagnosed in October 2018. It was a great help to me then and I hope I have helped a few along the way since. It's interesting to see how much treatment regimes have changed in those six years. I don't post as much as I used to as my experiences are less relevant today than they were but I'm still lurking.

I would like to thank everyone at Macmillan for the support they give to us all and particularly the Community Champions who are always there for the newcomers and keep the rest of us in line when we get a bit out of order!