Saturday, March 10, 2012

A guide to finding cancer support online

March 4, 2012 by Editor
Researchers at Ohio State University studied a group of women who had just had surgery for breast cancer, collecting answers about their feelings of emotional stress, their support system, their diet and exercise, and their smoking habits. The women were also tested for how well their immune system was working. They were divided into two groups, one of which attended regular small group meetings on topics related to their health and treatments, and the other group did not attend any meetings. These women were similar in many ways: age, diagnosis, race, marital status, and menopausal status. At the end of four months, all of the women were interviewed on the same questions they had answered at the start of the study.
The women who had attended small groups showed improvement by reporting lower levels of stress and anxiety, improved feelings of support, and a reduction in smoking. Their blood was tested for T cells, a part of the immune system that helps the body organize its disease-fighting resources, and their resistance to disease was higher. The women in the second group, who did not attend small groups, did not show this kind of improvement.
This study suggests that you will benefit from attending a support group, because it can strengthen you in body, mind, and emotions, while you are in treatment. When I was diagnosed with breast cancer and undergoing treatment, I was lucky enough to join a wonderful cancer support centre attached to the hospital I was treated at. It quickly became my lifeline and I fully embraced the opportunities there to attend yoga, meditation, art and creative writing classes. Just as beneficial were the chats over cups of tea with other cancer patients who shared tips on coping with treatment and understood what I was going through. Marvelous as this centre was, it did not prepare me for what happens next.
When the time duly came that I finished my treatment and I was declared NED (no evidence of disease), I knew I had to leave this group which had become my anchor and support and return to the life that had been put on hold for the past 9 months.  From time to time I would return to the weekly meditation class which had sustained me over the previous year’s treatment, but I found that I didn’t “fit in” anymore. I wasn’t in the same space as these other women who were newly diagnosed or in the middle of their treatment, and yet, I wasn’t quite ready for moving on. I know I am not alone in finding myself in this half-way space, the limbo land of post treatment.This was one of the hardest parts of my journey with cancer and as I searched for stories of those who were also experiencing my sometimes confusing post-treatment feelings, I felt very alone and unsupported. I needed to find a new source of support for myself, and so I turned online to find it.
The rest, as regular readers know, is history….
I set up Journeying Beyond Breast Cancer three years ago to help me make sense of my life in this post cancer treatment phase. And find it I did. Along the way, I connected with so many others on the same path, many of whom have become precious friends.
Writer and blogger, Jan Hasak, in a recent article for Medify writes:
Social isolation need not follow a cancer diagnosis.  Find a cancer support group through local hospitals, clinics and the Internet.  Help is only a phone call or click away.  Let your fingers do the clicking through the Google pages.  You’ll be surprised at the variety of ways your needs will be met.
You will find many online support groups, which range from listservs, newsgroups, chat rooms to Facebook groups, Twitter chats and blogs. You get to choose how open you wish to be – most groups observe rules of etiquette and confidentiality.  Over 60% of breast cancer patients who used online support groups said that they benefited from the online community, had less depression, felt less pain, and felt more spiritual.
Finding cancer support online is a great way to overcome barriers such as fatigue, returning to work or living in a remote community, which might prevent you from attending in-person support groups. You also get to connect with women who may be geographically distant from you but emotionally on your wave length and it’s a support group that’s open 24/7 (you will always find someone online somewhere in the world to connect with).
I know that many of you reading this will agree wholeheartedly with what I have written here about finding cancer support online, but today, I want to address those of you who are reading this and are concerned about issues such as privacy on the net. Or maybe you question whether an Internet chat could move beyond the superficiality of most social media and foster any kind of in-depth discussion?
I have met women who tell me they are regular readers of my blog, and while they don’t feel comfortable commenting, they nevertheless find reading it a source of inspiration and support.
So today I want to reach out to those of you who are reading this but remain unsure that you can truly find support online. What are your main concerns? How can those of us who are part of online cancer support communities help you overcome some of  the barriers you have?
And those of you who find and give support online, what has that experience been like for you? Do you have any advice to share with those who are considering stepping into the online support community? Which groups would you recommend? Please share your experiences as a guide to help others on the same path.
Posted in Uncategorized | Tagged , ,,  | 73 Comments

73 Responses

  1. on March 4, 2012 at 2:13 pm | ReplyMichelle
    I have only been connected to this group for a short time and I feel like I am getting to know many of you personally. I also feel like I have been accepted with open arms, hearts and minds – thanks for facilitating this welcoming and supportive community Marie
  2. on March 4, 2012 at 2:14 pm | ReplyAshley Martin
    I could not manage without my online support buddies – they are truly my lifeline
  3. on March 4, 2012 at 2:15 pm | ReplyJane Collins
    Excellent points here – I am a lurker and reader more than an active participant but I too can testify to how helpful it is to have a place to go online where you will find people who truly get what you are going through
  4. on March 4, 2012 at 2:15 pm | ReplyAine Casey
    I wish there was more of this kind of online support online in Ireland
  5. on March 4, 2012 at 2:36 pm | ReplyAmy Ohm, Cancer Survivor and Founder
    This is exactly what we provide at http://www.treatmentdiaries.com – support for any kind of illnesss, online and anonymous. Strong bonds are built between those who can relate and inspiration comes from every directions. Thanks for this reminder and amazing insight!
  6. on March 4, 2012 at 3:13 pm | ReplyNancy's Point
    I attend a support group when I can. I find it somewhat helpful, but not nearly as helpful as my online support group system that I mostly discovered through blogging. Somehow, in person people tend to hold back more. Also, I’m the only brca2 positive person in my group and I find the others don’t relate to that at all. I can honestly say my online support system has been a life-safer. It has truly kept me sane at times. I would encourage anyone contemplating reaching out for support online, or otherwise, to just do it in any way you feel comfortable. You will not be sorry. Personally, I like reading and commenting on blogs the best, but there are many other ways to connect online as well. A person needs to find what works for them. No surprise there! If you’re reading Marie’s blog, you’ve made a great start.
  7. on March 4, 2012 at 3:50 pm | ReplyBruce
    Although online support groups are a great source of support, make sure you check any medical information you get. Print out what you learn and show it to your doctor first so you can discuss your options realistically together.
  8. on March 4, 2012 at 3:52 pm | ReplyCarl
    It is interesting to read the research you have cited here. There is a growing body of evidence that an increasingly important aspect of health is our sense of connection to other people, both at a personal level (with friends and relatives, for example) and at the level of feeling part of a community.
  9. on March 4, 2012 at 3:55 pm | ReplyAllen
    Many studies have found that both men and women who have more social connections have a lower death rate, but those who are isolated, with little connection to others, have the highest mortality from all diseases. It makes sense to build a support network and I look forward to hearing more from your readers on what elements go to make up a good one.
  10. on March 4, 2012 at 3:55 pm | ReplyAnn
    I can testify to the fact that having others to talk to about your experience can be very helpful, and relieve feelings of isolation and sadness.
  11. on March 4, 2012 at 3:56 pm | ReplyAmy
    Through social media, I have been able to build a support network of like-minded people who I can turn to for , advice or encouragement – many of whom I have found through Journeying Beyond Breast Cancer :-)
  12. on March 4, 2012 at 4:07 pm | ReplyMia
    Finding your blog has certainly helped to ease my feelings of isolation as a breast cancer patient who is just finishing treatment
  13. on March 4, 2012 at 4:10 pm | Replyalicedonovan2
    Reading your blog and the comments your readers leave is so honest – it i is like stepping into a space with other like minded people, where I can let go of all pretences – I can just be me and know that I will be understood and not judged – thanks for providing the space to do this so beautifully Marie
  14. on March 4, 2012 at 4:20 pm | ReplyJeanette
    I’d love to hear your thoughts on what makes a good online community – I believe the person who manages it is key , would you agree?
  15. on March 4, 2012 at 4:33 pm | ReplyPaul
    Jeanette has brought up an important question and one that all community managers should ask themselves periodicially to see if they are on the right track with their offering/
  16. on March 4, 2012 at 4:35 pm | ReplyTom
    I believe you must offer the content that people are looking for – it is very much focussed on the user’s needs and experiences.
  17. on March 4, 2012 at 4:37 pm | Replydenyse
    For me a great support community will give users information they can’t find elsewhere. Through you blog I have become much more educated and informed on topics that I hadn’t given any serious thought to before. Journeying Beyond Breast Cancer has broadened my horizons and given me a new insight into issues that are important.
  18. on March 4, 2012 at 4:38 pm | ReplyDeborah
    Listening and responding are key elements to a great online support community. There is nothing worse than making a comment and being met with radio silence.
  19. on March 4, 2012 at 4:40 pm | ReplyEmily Evans
    Asking for opinions and feedback – really showing members that their opinions count – that is a good indicator of a successful online community – being open and respectful too – even if someone’s opinion doesn’t match yours.
  20. on March 4, 2012 at 4:43 pm | ReplyJanet Farnham
    I think online interaction is great esp when mixed with live chats, meet ups and access to easily downloadable resources and information
  21. on March 4, 2012 at 4:49 pm | ReplyJan Baird Hasak
    Online support groups have afforded me a new lease on life, a sense of social significance. Not only have I used them for social rehabilitation from breast cancer (as per my Medify article that you so graciously noted), but also for lymphedema and marital disintegration. Regarding lymphedema, an ACOR listserv group evolved into what we called “LE Winners,” which comprised men and women supporting each other in their endeavours to lose weight to ease the heaviness of lymphedema. For some people, sharing that type of intimate detail would be too personal, but I found it life-affirming. I encourage those of you who “lurk” to test the waters by commenting on another’s blog post anonymously, and seeing where things go from there. I’ve found bloggers more than willing to edit or delete comments I posted which I later thought would be better left unsaid. I’ve also privately emailed blogger friends on issues too sensitive to share more publicly. Thanks for this wonderful conversation on a very important aspect of recovery from any chronic illness or trauma. XOXO
    • on March 5, 2012 at 10:34 am | ReplyMarie
      Thank you Jan – you bring up some great points here – often we start off blogging, commenting and interacting on one specific subject (like breast cancer) but we can end up supporting each other through many of life’s challenges. The key is to find a community where you feel safe and supported and as you point out, the option to email members privately means you get to choose the level of exposure to a wider group you are most comfortable with.
  22. on March 4, 2012 at 6:00 pm | ReplyCandida Abrahamson PhD
    I’ve just been leafing through “Living Beyond Limits” by David Speigel, and one of his big beliefs is in the power of the support group. The research is fascinating. Once again you’ve done such a service here by bringing that concept to the virtual level. Can’t wait to twitter this one and hear the responses. Thanks for opening the conversation even wider, Candida
    • on March 5, 2012 at 10:28 am | ReplyMarie
      Candida and Lois thank you both for letting us know about David Spiegel’s work – I hadn’t heard of him until I read both your comments – I am looking forward to learning more. This is the power of online communities in action!
  23. on March 4, 2012 at 6:15 pm | Replyhjelmstd
    Dr. Speigel’s work has helped many people. And so has yours, Marie!
  24. on March 4, 2012 at 6:17 pm | Replyhjelmstd
    I’m sorry. I misspelled David Spiegel’s name above. He’s at Stanford University.
  25. on March 4, 2012 at 7:35 pm | Replyelynjacobs
    Many studies have found that participating in a support group at least once a week increases survival substantially. Online support groups give us a bit of a veil to hide behind as we bare info we might not feel comfortable sharing in person (and easier to write with tears then speak). We also can share valuable info and links, but as mentioned by Bruce, we must always consider the sources. keep in mind too, that any info considered at all “alternative” might not be received well by our docs, even if it is legit and valuable…..which includes the use of supplements that may help offset the damages of conventional treatment. while you can present evidence to your doc, likely he/she will not support the usage.
    On the downside, sometimes conflicting “evidence” and opinions can be confusing to people, leaving the reader unsure of who to believe. We need to remember to use what we find helpful, logical. We all have our own innate sense of what makes sense, and should never be bullied for our beliefs. I have noticed that nasty arguments can break out on some sites, which I find rather sad. No treatment or therapy is right for everyone, and while we are all entitled to our opinions, I think it is important for the “owner” of the thread to monitor the comments to keep them helpful, not hurtful. I find that those threads drain me of energy, even when I am not involved in the conversation. I have dropped off some sites for this reason. Thankfully Marie, your blog is visited by wonderful, supportive people, one of the many reasons I enjoy it.
    hugs to all….
    • on March 5, 2012 at 10:16 am | ReplyEditor
      Elyn, I sure do appreciate you taking the time to leave such a comprehensive comment which raises important points. I was really struck by your words that “We all have our own innate sense of what makes sense, and should never be bullied for our beliefs”. This ties in very well with what Coco said in her comment too and again I want to stress, as you have done, if you find that a group does not provide a safe, non-judgmental, respectful space for you and your beliefs, then please do not stay with that group, but go find one that will. Again to quote Dr Attai, there is something for everyone out there. Thanks again.
  26. on March 4, 2012 at 8:13 pm | ReplyAnne Micallef
    Marie, you were the one who introduced me to blogs and I look forward to reading yours, though I’m definitely a passive participant. On the other hand I’m an active member of a local support group which goes well beyong the inital treatment phase – in fact we even have members who are 12-year survivors. I don’t therefore feel much of a need to find support online but find it very comforting, and inspiring at the same time, to know that there are so many amazing women out there each with their own story and experience. But I am thinking of dipping my toes in the water – especially after reading Nancy’s comment, which really touched a chord because I don’t know any other brca2 postive people either, except family members. Not sure if I can answer any of your questions but all I can say is that you are definitely doing something right!
    • on March 5, 2012 at 10:13 am | ReplyEditor
      Hi Anne, I really do appreciate you becoming an active commentator on this post :-) I am really interested to hear that your local support group is there for members on a more long term basis – I haven’t come across this before and it’s something I’d like to see more of. Always good to connect with you on Facebook – Marie
      • on March 5, 2012 at 11:36 amAnne
        Regarding our group, unfortunately we have limited resources and so maybe can’t provide all the activities and help that other support groups in other countries can, but we try to give plenty of peer support and share our experiences – both the good and the bad. We do have some very loyal members who continue to come to our activities and support us over many years and that was perhaps the one thing that really made an impact on me when I first joined. My first reaction to my diagnosis was – naturally – “I’m going to die”, but it gave me immense hope that perhaps I too could be a long-term survivor.
        I am however enjoying my first forays into the online community & have you to thank for that :)
      • on March 5, 2012 at 11:54 amEditor
        That is great indeed Anne – thanks again for sharing your experience with us
  27. on March 4, 2012 at 8:47 pm | ReplyThe Accidental Amazon
    Affection, humor, generosity, practical suggestions, honesty, and perhaps most of all, sanity — I’ve found all of those things online in peer forums and in the blogosphere and on social media. And I’m very grateful for it. It far surpassed what I could find in ‘real life.’
    • on March 5, 2012 at 10:10 am | ReplyMarie
      Yes Kathi! That is exactly how I feel too – and it does surpass what I have been able to find or could hope to find in “reality”.
  28. on March 4, 2012 at 10:08 pm | ReplyBreastCancerSisterhood.com
    I have a lot of readers who email me privately, but never comment on my blogs, who tell me what a help and support my words are. It’s so gratifying when someone tells me I’ve written something that helps them. I think that’s how all of us, who blog, feel. We are an extended family that knows what we’re feeling, and in some ways, I believe we’re a lifeline for one another.
    XOXOXO,
    Brenda
    • on March 5, 2012 at 10:09 am | ReplyMarie
      Beautiful Brenda and so very true. Thanks for being such an integral part of supporting each other online.
  29. on March 4, 2012 at 10:57 pm | ReplyCatherine Brunelle
    There are many times I become ‘cancered out’ – but alternative, so many times when I’m scared, frustrated, or elated (with good results) . . . the amazing thing about the online community is that a person is allowed to come and go as they please. No schedule meetings, no obligation – and the support has never been less than incredible.
    I appreciate my in-person live laugh learn, but online is a special community. Thanks for this post, Marie. I myself have befitted hugely from online connections and sharing.
    • on March 5, 2012 at 10:07 am | ReplyMarie
      Catherine I love that comment you make “that a person is allowed to come and go as they please. No schedule meetings, no obligation” – this is so true!
  30. on March 5, 2012 at 1:37 am | Replykimvanderpoel
    This is so awesome–Thanks for sharing this information. I am going to link over from two of my blogs, send an email to my support group, and share it on FB. As my internet time has been more limited, I am not able to comment on the many blogs I read…but sure do appreciate all my blogger friends! Love ya!!
  31. on March 5, 2012 at 1:59 am | ReplyLiza Bernstein (@itsthebunk)
    There’s so much (positive!) I could say but will limit myself to an idea for newbies.
    While, at the end of the day, transparency and authenticity are a couple of the essential qualities of a true community, newcomers to online cancer support might want to consider dipping their toes in before “going public.” That can be done with an alias. You can keep your identity private while you get a feel for how it all works. As long as your interactions and what you share are honest and true, then I feel you can interact online with integrity. After a while, as you get more comfortable, you might then feel more at ease sharing your real name.
    That’s all for now. Thanks, Marie for this great conversation!
    Liza
    • on March 5, 2012 at 10:03 am | ReplyMarie
      Thank YOU Liza – your advice is terrific for newbies – and indeed it is how I first started online too – including starting Journeying Beyond Breast Cancer with complete anonymity..and now look at me :-)
      • on March 5, 2012 at 10:48 pmLiza Bernstein (@itsthebunk)
        YES!! Look at you now!! As that old ad used to say….. you’ve come a long way, baby! I too started online with complete anonymity, in fits and starts beginning in the late ’90s and up until late 2010 when I started to use Twitter and tumblr in earnest…. and it’s only in the past few days that I’ve gotten to the point where I’ve actually posted a pic of myself on my new blog.
        This is such a great topic….. and it’s so wonderful to read all the various contributions. I wish I had the time to post answers to each of them, but alas I don’t….. so…. all commenters, please accept my collective thank you!
        Happy Monday to all :-)
  32. on March 5, 2012 at 2:09 am | ReplyCoco
    I attended an exercise/breast cancer support group in Australia which has quite a high profile internationally – its ideas about exercise and recovering from breast cancer emanated from the United States and is sponsored/project managed by a high profile women’s charity.
    The exercise component was brilliant. The exercises had been well thought out by ballet dancers and others who had a great understanding of anatomy and addressing pain, muscle contraction etc. The exercises were in a heated swimming pool so that aided movement and eased the effects of gravity.
    If the support group had simply taken up its entire time with exercise, I would rate the program a 10/10.
    Unfortunately the talking/sharing side was appalling. There may be many reasons for this but frankly the exercise staff were grossly out of their depth. Meeting 1 consisted of introducing ourselves and using a white board to set up The Rules for these sessions. Rule 1 was a requirement to always be positive. In other words, don’t you dare create any downers by sharing any traumatising or shall I say – real – parts of our cancer experience. We were all relatively close to our brush with a potentially terminal illness but by gosh, we had to be upbeat about it or… we weren’t wanted there. It was so sad to be sitting with women who were all going through the same thing, each of us with our faux little smiles plastered on our faces, making polite [meaningless] conversation lest we let the organisers down by exhibiting something vaguely human like a tear or fears for out future.
    I was so alienated by this atmosphere of mandated cheeriness I wrote a blistering piece against the positive thinking breast cancer police. I posted it on this site. I received more support, genuine comments and feedback from this online community within hours of that than I received in months of so called face to face “support.”. I cannot speak highly enough of the online community provided here, where, without petty censure, we can be our real, messy, sad, happy selves.
    • on March 5, 2012 at 10:00 am | ReplyMarie
      Hi Coco, it is great to hear from you again – I often think of you when I read something tyrannical about positive thinking! Your guest post really struck a chord with many readers and gathered a huge response. (You can read it Coco’s guest post herehttp://journeyingbeyondbreastcancer.com/2011/08/30/guest-post)
      I do think as Dr Attai says in her comment – there is something for everyone out there – you just need to find the group that suits you best. I want to stress, that how we experience cancer is highly individual and for some people adopting a positive attitude will be a very healing and empowering thing to help them through and there are many groups both on and off line to support them in this. Others, as you have pointed out Coco, find this attitude doesn’t sit well with them and that is ok too. There are plenty of people who share this point of view – it is all about finding a space which honors how you feel in the moment – not how others expect you to feel. Thanks again for your comment.
  33. on March 5, 2012 at 3:56 am | Reply@chemobrainfog
    Online support groups are very powerful. When we tweet chat on #bcsm, it’s a public forum and anyone can see it. Some of the online support groups are HUGE and overwhelming and some of them are more intimate and organized differently. I have navigated through a few and here are a few suggestions for the smaller groups where you can actually get to know people:
    http://www.cancersupportcommunity.org/MainMenu/Cancer-Support/Online-Support-Groups.html
    that one has facilitated groups that meet for 90 minutes each week. You have to sign up to be part of a group chat.
    Some of the hospitals have online support sites, too. Those are a few to get the list started! (I have to give a special shout out to the I Had Cancer gang…. they put the link to my chemobrain blog on their Facebook page and the response blew my mind!) …..
    I think you need to join a few sites to see what they are all about and then stick with the one that you find easiest to navigate.
    xoxoxox
    Nice job, Marie…. great idea to put something like this together!
    • on March 5, 2012 at 9:51 am | ReplyMarie
      Wow! Thanks so much AnneMarie, you have gone to a lot of trouble to put together this list of support resources – really appreciate your efforts.
    • on March 6, 2012 at 8:59 pm | ReplyVicki Tashman, Founder
      I agree with everything you said! When I was diagnosed, I found most of the online chat very negative and overwhelming! That’s why I founded http://www.pink-link.org. So any survivor can connect with someone with her exact pathology and get the positive, reassuring support she needs!
  34. on March 5, 2012 at 4:09 am | ReplyDeanna J. Attai, MD
    Thanks for this post, Marie. I think it’s important for patients to realize that there are many ways to get support, and there is definitely something out there for everyone – regardless of your age, stage at diagnosis, or personal situation. You just have to be willing to keep looking – it might not be the first group you join, and you might “outgrow” your once-ideal group. Online support is not for everyone, but for many it is the only way to do support – there is so much to choose from. The bottom line is that there is something for everyone – no one has to go through this difficult journey alone .
    • on March 5, 2012 at 9:51 am | ReplyEditor
      Thank you so much Dr Attai for taking the time to comment and I so agree with you, that there IS something for everyone and no one should go through this journey alone.
  35. on March 5, 2012 at 7:10 am | ReplyRenn
    Breastcancer.org was my lifeline post-diagnosis. I lurked for a month in various forums before finding one specifically for women having mastectomies the same month as me. Through that online group, I found another online group — women diagnosed the same time as me and focused on working out during reconstruction. Over a period of 6 months, a friendship naturally grew among a small group of us (who live all across the US) and we eventually branched off and started a private Facebook page where we chat candidly about anything and everything relating to our cancer and reconstruction experience. In the middle of that, I started blogging — and that opened my world even further to so many awesome and talented women and men braving cancer and blogging about it. What an A-MAZ-ING group! And PS: There are many in-person support groups in the city where I live, and I have tried a couple of them — with mixed results. I haven’t given up on the face-to-face idea, but I realize I’ve already created my own support group — cobbled together with keystrokes — and I love them all. I cringe to think where I would be emotionally without my “virtual” support communities! To the newbies out there, just keep reading whatever strikes your fancy and leave a comment here and there on posts that you relate to. You will be surprised at how soon you’ll start to feel part of a much larger community. Welcome! ;-)
    -Renn
    • on March 5, 2012 at 9:36 am | ReplyMarie
      What a fantastic comment Renn – thanks so much for sharing your experience of both in person and online support groups. When I was first diagnosed I found breastcancer.org a great resource for information although I did not join any of the support groups on it at the time.
  36. on March 5, 2012 at 10:39 pm | ReplySuzzann Cummings
    The online support community has been a tremendous help for me personally. Not only am I able to go on my chosen sites day or night, I’ve become quite comfortable doing so. In the beginning, I was a “lurker” of sorts. Now, it’s where I turn to when I need an answer or have a question. I must admit that I have “met” some of the most passionate and kindest individuals through the internet! I have spoke on 2 different occasions to different organizations about the online support community and the potential benefit. Most were very curious, questioned the privacy of the online communties, but also, they were very receptive to the idea. With so many website out there, it’s hard to know which ones truly give accurate information. One thing I did do was I gave out a list of websites that were reliable and trustworthy…and of course JBBC was 1 of those websites. As Dr. Attai mentioned, the online community is not for everyone, and it’s really a personal choice. I also agree that no one should have to go through cancer feeling alone-or not knowing who and where to turn to for answers to their questions.
  37. on March 6, 2012 at 2:14 am | ReplyJillian Exton
    Hi Marie, you will find a plethera of information onhttp://www.lessonslearnednetwork.com for both breast & gyne cancer. We still have more information to add- it’s evolving. Hoping to have skin cancer join us in the next few months.
    Cheers Jillian
  38. on March 6, 2012 at 2:19 am | ReplyJillian Exton
    Should also let you know about the book, WHAT’S YOUR PLAN- Manage Side Effects of Chemo & Other Cancer Treatments – More Than 90 Natural Supplements .. Evidence-Based’.
    http://www.managesideeffectsofchemo.com/
    it should be online in the next few days…. hope it helps those following in our footsteps!!!
  39. on March 6, 2012 at 5:58 pm | ReplyPinkKitchen (@PinkKitchen)
    For some people, it is hard to speak aloud even if they are in a safe community. I know that weight is a sensitive issue, and people who have gained weight due to cancer treatment and the whole cancer experience have an added complexity. Just wanted to reach out and tell you that you can contact me at Pink Kitchen privately any time with your nutrition/cooking questions.
  40. on March 6, 2012 at 8:05 pm | ReplyMona
    Hi every one. I think that online support is great…. I can switch on any time day or night. When you have family and all goes with it, it is good to have the online community at a time that suits me. I do go to a support group but sometimes I find that it can be a negative experience and I go home thinking too much. We can be who we are and dont have to but on a brave face that has to be done with the people we meet. Also when I was unable to leave the house during treatment it was a life line. I know that when i told people that I had cancer the response could be negitive but going on line and reading the blogs made me laugh. Was it because we are in the “Big C club” and nobody else understands? No matter where we are in the world we go through the same emotions and phyiscal side effects of cancer. I enjoy looking at the weekly round up which makes me smile. It does not matter what you look like ie no hair, sitting in pj’s. People dont make judgements on line. We can relate to each other without all the other stuff that comes with our soceity. Maire you work really hard at your blog and it makes enjoyable for your readers. thanks to all the bloggers. Oh yes my husband for buying the lap top other wise I would not be writing this!!!!!!!!!!!!
  41. on March 6, 2012 at 9:46 pm | ReplyMarie Ennis-O'Connor (@JBBC)
    Mona, thanks so much for such a great comment – I really appreciate you being here and sharing your experience with us
  42. on March 6, 2012 at 9:49 pm | ReplyMarie Ennis-O'Connor (@JBBC)
    Thanks again everyone – it has been really great to read your comments, hear of your experiences and taken note of your recommendations. I sure do appreciate your continuing support and the time you all take to share your wisdom and insight – I know it makes a difference!
  43. on March 6, 2012 at 10:09 pm | ReplyLinda
    As someone relatively recently diagnosed and having just finished chemo I haven’t really tapped into the online support that much yet. I’d say I’m fairly au fait with the strengths and weaknesses of the Internet but it can still be a fairly scary environment – it’s just too easy to find stuff about your condition that you might be better off not seeing. But it’s good to know that there are people out there who will weigh in to give you support when things seem a bit bleak. And it’s been great to be introduced to your blog, Marie, and via that, to other bloggers. Thanks for all you’re doing.
  44. on March 7, 2012 at 5:25 am | Replyuvmer
    Although I do not have cancer myself, I lost the most important person in my life to brain cancer. For 18 months, I was essentially the lone caregiver. Mostly we received treatment hours from home. The diagnosis, the disease, the prognosis, the treatment, was so difficult and very isolating. After it was over, I was left standing devastated. People did not know how to relate to me or what I had just been through. I was (and continue to be) pretty much alone, wondering how I was ever going to be able to go on. Somehow I ended up on twitter. The twitter people… survivors… have gotten me through the last 2 years. The support, acceptance, understanding and love that I have received in the virtual world far exceeds that from people in my every day life.With my twitter friends I can share tears, fears, frustrations, as well as laughs and giggles without judgement…. and with “people who get it”. I will never be able to thank them adequately. Although I will never be the same person I was before cancer, the progress I make in the healing process is largely due to my twitter family. The only tough part about having such wonderful twitter friends is that with the vast majority of them, I will never be able to look them in the eye, hug them and say thank you.
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