January 2022 - Finding peer support from the Online Community

7 minute read time.
January 2022 - Finding peer support from the Online Community

Now we've nearly reached the end of January 2022, we're looking back on the last few weeks and sharing some of the amazing emotional support you've been offering each other. 

So far in January, we've seen 1,568 new members join the Community looking for peer support. Although we're always sorry that circumstances have brought you here, we wish you all a warm welcome to the site. 

If you're new to the Community, it's a collection of online support groups, divided into separate forums. You can find forums dedicated to your specific cancer diagnosis or cancer treatment. We also have forums for anyone supporting loved ones or family members with cancer.  If you're looking for more general chat and support, you can also find forums where you can talk about your pets,  spirituality or even share your creative projects. 

Unlike face-to-face cancer support groups, the Community is open 24 hours a day, 7 days a week. We know that many find it an enormous boost to their well-being to be able to regularly access peer support through online communities like ours. 

Let's now take a look at the Community through January and highlight the peer support you've provided each other and the personal experiences you've shared to help others feel less alone.

When a new member came to the breast cancer forum urgently seeking some help, another member was on hand to offer empathy and support. 

"I just wanted to give you a massive virtual hug and tell you that you are not alone. I have frequently found sleeping a problem. The anxiety of procedures can get overwhelming. However, I am out the other side - as in six weeks post operation and you will feel relieved once you have got today and Thursday over with.  I'm sure most of us feel like giving up at some point, but you will feel better when you know you have got rid of the cancer. Hold on there and good luck today - deep breaths and another virtual hug." - MickeyM, breast cancer forum

Members also discussed how difficult it can sometimes be to talk to their personal support network about their diagnosis.

"I'm also finding it difficult to deal with some peoples' reaction to the news especially those who say 'oh I'm sure that you'll be fine'.  Yes  I'm trying to feel positive and think that I will be but having seen my sister go through it I know that it's not going to be an easy journey." - Buttercup, breast cancer forum

What a difference it can make to be able to talk to people who understand what you're going through.

"I know just what you mean by the it will be fine comment.  Much as we want to believe this it doesn’t feel like that, does it?  We want to and try to be positive and they mean so well.  But it kind of leaves me feeling a bit lonely or alone with it.  But then someone comes along and gets it. I get it." Ep21, breast cancer forum

"I'm so sorry that you have had the same news as me so recently, but it's comforting to know I am not alone." - Mary, breast cancer forum

Similarly, in the prostate cancer forum, a new member received some reassurance from others in similar circumstances. You can read the full thread by clicking on the link to the forum at the end of each quote.

"Must confess I’m a little concerned with such a high initial PSA reading and would appreciate some encouragement that the outlook is not as bleak as it sounds!" - Silkworm, prostate cancer forum

In the bowel (colon and rectal) cancer forum, a new member shared news of a recent diagnosis. 

"Spoke with the consultant on Monday who told me that they believe I have colorectal cancer that looks like it has spread to the peritoneum in 3 places....I am trying to keep positive and active whilst I wait and have already found some comfort from reading posts on this board, so thought I should be brave and post myself." - Jumpin Jack, bowel (colon and rectal) cancer forum

Community Champion 'court' was on hand to offer some support.

"The first post is very hard indeed but connecting with others can be very helpful , particularly in the early days . Not only does it reduce the sense of isolation but gives a lot of tips on how to navigate a difficult diagnosis." court, bowel (colon and rectal) cancer forum

A new member to the oesophagus cancer forum also came looking for peer support. Members of the group offered empathy and shared coping strategies.

"Having a rollercoaster of emotions ranging from a little hope to absolute despair...How to cope best is the question,  to those that have trodden this path?" - Wayne, oesophageal cancer forum

"The emotional rollercoaster ride is the scariest one, cry and scream and shout when you need to. I used to wait until I was alone in the house, after my wife and son went to work. I felt better for getting it out of my system and I started to get more positive."  Zappaman, oesophageal cancer forum

If you're here on the Online Community because you're supporting a loved one with cancer, there's lots of support for you too. 

"I feel so scared, I can't lose her. She's been there for me all my life, how do I support her? My mum has done so much for me, how do I repay her? I'm sad and feel so lost. I love her, I love her so much and what do I do if she is terminal? There's so much 'I' and 'me' here. I want to support her and I want to be there for her. How do you support a parent with cancer?" - Laurooon, family and friends forum

Community member Edinmum responded with kind words.

"First of all please don't think of yourself as being selfish for saying 'I' and 'me'. For you it is about self preservation, what can you do to get through this so you can be there for your mum." - Edinmum, family and friends forum  

If you're looking for similar support, why not click on the link at the end of the quote to read the whole thread. 

The Community is also here for anyone bereaved by cancer. We know that members can find a lot of comfort in a support network like the bereavement forums in the Community, sharing coping strategies and emotional support to improve each other's well-being and mental health. 

"I just know it’s not going to be a good day and now I am filled with dread and overwhelmed again by those waves of helplessness, loneliness and sadness. I need a ‘switch’ to turn to turn all that off. I hope everybody else is not going to have one of these days." - Jude2, bereaved spouses and partners forum

"Oh darling, I felt just the same yesterday, woke up at 4:30 still crying... read posts on here, they made me feel not so alone, that’s all we can do, reach out to each other in those dark moments and know people care and we’re not alone…" - budge13, bereaved spouses and partners forum

If you're new to the site, or simply haven't posted yet, we hope this provides some reassurance and encouragement that the Online Community is here for you.

"I think basically we need to accept that however strong and independent we were in the past, we are facing a really tough situation right now and we deserve all the support we can get, so we should not be afraid to ask for it." AisB, emotional support forum

Please don't hesitate to contact us in the Community team if you need some help using the Community, or finding the right support for you. We're here seven days a week and always aim to get back to you within two days. The best way to contact us is by email on community@macmillan.org.uk

If you're struggling with your feelings and would also like some direct support from Macmillan, our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

We'd also love to hear from you in the comments section below. You can tell us if you've found this blog helpful, comment on the support shared, or even make suggestions for future Community News Blogs.

Anonymous
  • Am looking for people with lung cancer and their experience on Immunotherapy. Myself have 3 melanomas, so am told, and am going for the treatment if I can cope with the side effects.   Thank you

  • Hi GJL I started with bowel cancer, It spread to my lungs, abdominal cavity and groin. I'm on immunotherapy called nivolumab I'm going to have my 20th round next week. My side effects have been itching ( avino moisturiser helpd) Constipation (lactose helps) Mouth ulcers ( mouthwash) from my nurse sorted that. Just been diagnosed with type2 diabetes , they're NOT SURE if treatment coursed it. As my sugars up and down before treatment started. I have been stable for 19 months.  Best wishes I hope you don't get to many side effects, but lots of help on here. X

  • Hello

    My name is Steph and I'm part of the Macmillan Community team. May I wish you another warm welcome to the Community although I'm sorry that circumstances bring you here. I hope you find the site to be a safe place of comfort and support. 

    You might find it helpful to join our lung cancer forum here. You can join by clicking on the 'join group' banner, then click +new (or + on a mobile) to start a new post. Whenever you’re ready and feel comfortable doing so, I’d encourage you to post a message and introduce yourself so that members can offer you some support. 

    If you’d like to talk anything through with an expert at Macmillan, I’d encourage you to contact the Support Line. You can talk to someone who's here to listen and find out more about the emotional, practical and financial support Macmillan can offer.  Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

    There’s some help with using the Community available here if you get stuck, or message us back and we’ll support you further. You can contact us privately by email at community@macmillan.org.uk if you prefer. 

    I hope you find the support you’re looking for. Please do let us know if you have any questions or need further support with anything at all. I hope the Community helps to show you that you are not alone.

    Kindest Regards,

    Steph - Online Community Officer

  • Hello

    Thank you so much for sharing your experience here and I'm sorry for the diagnosis which has brought you to the Community. I hope you're finding it helpful to be able to talk to others on the Community.

    I've directed GJL to the lung cancer forum, so hopefully you'll be able to support them further there, if they decide to reach out for further support. 

    Do let us know if you need any further help or support. 

    Best wishes, 

    Steph - Online Community Officer 

  • Thank you  Steph, this site is very supportive and it's handy to chat with people who understand x