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
  • just been diagnosed with non small cell cancer see specialist tomorrow for full detains of chemo radiation treatment & hope to start the following week please tell me of your experiences thanks

  • Hi

    May I wish you a warm welcome to the Community, although I'm sorry that circumstances have brought you here.

    I'm so sorry to hear of your diagnosis and I hope you find some comfort and support from the Community. 

    I can see that you've already posted a message here in the lung cancer forum, which is the best place to find other members with similar diagnosis to you.

    If you keep talking in the lung cancer forum, you're sure to meet more members who can share their experience and help you through this.  

    You also have the option of talking to someone at Macmillan. You can talk things through with a specialised adviser 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 00email or live webchat.

    Please do let us know if you need any help finding your way around, Paul ob, we're here to help you make the most of the Community.

  • My husband is recently diagnosed with metastatic melanoma that has spread to his lungs. About a year and a half ago he went to the doctor about a swollen mole on his head that was painful and itchy. The doctor removed the mole and my husband was then diagnosed with stage 2b but first they had to do an excision and removed his tumour which was a hole in his head the size of a golf ball…a few lymph nodes in his neck was also removed where they discovered some cancer cells. Immediately he was put on immunotherapy for suddenly stage “3b” cancer Which he was on for 11 months. About 2 months ago he had a pet scan and drs called to tell him the bad news of cancer cells in both of his lungs. He has now been put on a new type of immunotherapy treatment called “ nivolumab“ for metastatic stage 4 melanoma….but since my husband was on this new type of immunotherapy he suffers from headaches, itchiness as well as diarrhoea where he stands up 3 to 4 times up through the night. My one hope is that there is a 50 percent chance that it can work. So I just patiently wait and see.  We then lived in Surbiton. We used to live close to the Marsden in Sutton area. This is where my husband gets the best treatment. Now we live in Frome Somerset as we bought a house that was before he was diagnosed with stage 4 melanoma. But we still drive in for his treatments and his doctors appointments, blood tests and scans. I am so grateful for the doctors care and helpful nurses and people that really care for my darling husband. Every time I go there I have a vegetable soup date with my husband where we can just have coffee and drink our healthy soup.  Its been a really scary time. I would just like everyone to go for a yearly check to check out their skin for dodgy moles.  As one always thinks it happens to “ other” people. Sun can be so harmful. Yes I live in England and I definitely prefer the rain.

  • Hi Snow white and the dwarfs,

    It’s Megan here from Macmillan’s Online Community team. Thank you for posting to share what has brought you to join the site. I am so sorry to hear about your husband’s melanoma diagnosis and what you are both coping with.

    It’s good you have reached out for some support and I hope you’ll find posting in the cancer forums helpful. From looking at your profile I can see you have joined a few groups and have already started posting and replying to discussion threads.

    You may have already taken some time to explore the Community as there are different ways you can access support here. Alongside speaking to members in our Community groups, there's the Ask an Expert section where you can ask questions to the Nurses, Financial guides, support advisers and Work Support Officers.

    If you need to chat to the Nurses about your husband’s treatment, please do get in touch. Alongside posting questions in our Ask an Expert section, you can speak with the specialist teams on the Macmillan Support Line on 0808 808 00 00 from 8am to 8pm, every day.

    There’s also the option to send an email or use live webchat during the opening hours.

    I hope this information helps you find the additional support you may be looking for and if you need any help with using the Online Community, please email Community@macmillan.org.uk or send a private message to the Moderator account.

    Best wishes, 

    Megan
    Macmillan's Online Community team