Can you help?
I have been invited to give a talk to board members of a cancer support group on how they can incorporate a blog on their website and while I’ve been preparing my presentation, and thinking about the elements that make a great blog, it occurred to me that I should really ask what you think about this!
So….
I would love to know your thoughts on what you think they should include on their blog.
But first, a little background on the centre.
This centre caters for individuals and their families who have been diagnosed with cancer. It provides counselling and holistic therapies such as reflexology, yoga, massage, meditation, and tai chi, as well as a safe, supportive environment to relax with a cuppa and a chat. At present their website provides contact details and lists the therapies that are available and they are now considering making it more interactive and incorporating a blog.
Your answers to the following questions would really help me provide the centre with the best way for them to move forward with their project.
- Did or do you avail of services in a similar cancer support centre?
- If they have a blog did you read it?
- What kind of articles would you most like to read on a centre’s blog?
- What do you think they could uniquely provide that is not provided elsewhere in the online cancer support community?
- Do you have any examples of cancer support centre blogs to share with us?
Looking forward to hearing your ideas!
Earlier this year, my wife’s mother passed away after a long battle with cancer. The last 2 months were very tough for everyone and I was thinking that it would be great for the centre to provide advice (via their blog) on how spouses can best support partners who have parents or siblings with cancer. Advice for the different stages would be great i.e. diagnosis, terminal phase, death and after death.
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Thanks so much for the comment Frank. I hadn’t thought about it from the point of view of family in this way, so this is really helpful.
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I think the value the centre would provide would be very much in being a trusted “go-to” source for the correct information – by that I mean – that we read so much about the latest breakthroughs in cancer research – it would be good to know that it could be interpreted or advice given on where to get more information on a site we know we can trust.
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I am attending a cancer support center in my home town and it has been a life-line to me. I would like to think that when it comes time for me to leave it and join the world again, I could still keep in touch with what is happening in the center via a blog. I would hate to lose that connection to what has been my home from home over the past 4 months and a blog seems a great way to maintain the link.
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I would like to see articles on how to keep healthy post treatment – advice on nutrition and exercise would be top of my list.
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It would be nice if clients (if that is the right term) of the centre could share some of their stories on the blog as well as the centre providing practical advice to readers. I don’t mean anything too private – just their advice perhaps on how they coped with treatment side-effects – like hair loss, mouth ulcers, nausea – that kind of thing.
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Adding to this, it would be useful (and possibly inviting to people debating whether or not to visit the centre) to have personal stories of people visiting and using the centre’s resources. Like what it’s like to have acupuncture at the centre, or what it’s like to be counselled about money concerns. This way the centre becomes personal – more human – and certainly less intimidating to anyone nervous about rocking up to the door.
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It would be good to have someone explain the benefits of the treatment the centre offers and introduce us to the practitioner by providing a bio or some background on who they are.
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There is huge scope to provide a better service to users of this centre and I think a blog is a great way to go about it. I don’t know of any cancer support centre in Ireland who is doing this, so it would be a welcome initiative and if anyone can show them how to do it..you can Marie!
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Good points by everyone here – nothing new to add, except to say, if anyone can give blogging advice, as Alan says, it’s you 😉
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I like the ideas of bios of the center’s staff and post-treatment articles (exercise, nutrition) as well as survivors’ stories. Hearing from someone who made it through what I’m going through had been so helpful and encouraging. The center picked the right person for the job, Marie!
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Thanks so much for your comment
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Did or do you avail of services in a similar cancer support centre? Yes.
If they have a blog did you read it? Occasionally
What kind of articles would you most like to read on a centre’s blog? Practical, helpful, well researched info on what we can do for ourselves to stay healthy – CAM for instance.
What do you think they could uniquely provide that is not provided elsewhere in the online cancer support community? Almost everything is provided on one blog or another for survivors. What has been especially popular on my blog is my Freebies and Resources list for survivors. Have seen the same kind of thing elsewhere, but I put a bit of time into researching mine to make it comprehensive and it’s drawn a lot of traffic from survivors needing these specific products and services that can otherwise be very costly
Do you have any examples of cancer support centre blogs to share with us? Not sure what you mean by cancer support center, but some of the supportive blogs I’ve seen are Pink-link and then some of the large organizations like Lymphoma and Leukemia Society and Colon Cancer Alliance have helpful resources tied to those specific cancers and CancerCare.org has a lot that speaks to survivors of all cancers. l
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Oh, I really like Caroline’s idea of having survivors share their stories. And the bios of staff are good too. What both of these suggestions have in common is that they make it personal. The give the organization reaching out a familiar “face”
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Being in a different time zone, I’m late again to the discussion. I can only add that I did use a cancer center’s support services. No, they did not have a blog and their site was basic and sparse. I would have used a site which was more intimate as to the professionals and exact services offered. Any site that speaks to the patient’s need to be in a safe, nurturing environment would be a plus. Good luck, Marie. They were smart to ask for your input.
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Thanks for your kind words Debbie and your comment is very helpful indeed.
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Hi Marie,
I agree with the comments of the others. Your blog was a specific life line for me. My advice is to use elements that make you successful on your blog. You have such a balance between correct information, what is new on the horizon, and taking care of the mind, body and soul which is essential to the whole person. I also follow Caring Bridge which families can blog on what is going on with them in the cancer area. You might want to look at this also. In any case you are going to do great with your presentation and thanks for asking!
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Thank you Luann 🙂
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Marie,
What a great project! I will be honest. I was more of a put my head in the sand, trust my medical team, and not do too much research kind of girl. I was scared about what I might find, if I looked out there on the web. Yes, I know – counter intuitive for what I do now 🙂
So, I can’t tell you what I used during treatment, but what I think it the most impact-ful is hearing other people’s stories. Maybe stories from patients on how they benefited from the various services/options at the centre interwoven into their own stories of survival.
Although this site is too new for me to have used it when I was going through treatment, I like what http://www.facingcancer.ca is trying to do with integrating questions and answers as well as survivor and caregiver blogs. I’m only slightly biased because I am one of their bloggers 😉
Hope this helps a little.
Terri
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Hmm, like Terri I had inhibitions about using a centre. But for me it wasn’t cause I wanted to hide – it was just because I was so nervous to engage with these services (felt as though, somehow I was playing the system by getting a free massage) . . . it took a lot of work to be able to visit the centre. This might have been due to the drugs, or the exhaustion or whatever – but actually using the centre’s resources was intimidating. Maybe this can be addressed somehow?
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This is great feedback Catherine – I will be delighted to pass this on and really appreciate you taking the time to let us know what you think.
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It helps a lot!!!
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** Tailor content to what makes the Centre unique.
** Website design should be clear, streamlined. easy to navigate.
** Provide a schedule for on-site support groups along with contact info of person in charge. Include regular quest speakers/special topics to foster community and bring people in.
** Ask a nutritionist or registered dietician to post tips on how to eat better during and after cancer treatment. A general list of foods to eliminate from the diet along with foods to add would also be terrific.
** Provide relaxation and exercise tips (written by Centre staff members)
** Give former patients a blog forum where they could share their specific experience, mention staff members who were superb, etc.
Three examples:
** The UCLA Jonsson Comprehensive Cancer Center’s website has good elements but dull design: http://www.cancer.ucla.edu/Index.aspx?page=71
** Leavey Cancer Center has a good “navigator” program but no blog: http://www.northridgehospital.org/Medical_Services/Cancer_Center/182583
**The Pink Lotus Breast Center has a great patient services section that includes elements mentioned above: http://www.pinklotusbreastcenter.com
-Renn
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Here’s a good example from the Breast Cancer Society of Canada — their website offers terrific “emotional support” tips for BC patients: http://www.bcsc.ca/p/211/l/237/t/Breast-Cancer-Society-of-Canada—Waiting-for-Results
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This is wonderful Renn – very much appreciate you pointing me in this direction.
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I go to a center called The Wellness Community, where I take advantage of their yoga and lymphatic movement classes. I also go to some of their special programs. I get a newsletter/calendar bi-monthy, as well as email announcements, but I don’t believe they have a blog.
I would like to see articles about how to empower yourself as a patient and survivor. Tips/recipes on cancer-fighting foods and supplements, exercise, spirituality, etc. It would be also helpful to have something about navigating the complex healthcare system (second opinions, questions to ask doctors, clinical trials, etc.). I think it’s important to help guide patients and provide them with needed resources.
I like EmbodiWorks’ site: http://www.embodiworks.org/
Also Talk About Health: http://talkabouthealth.com/
And well, mine, actually! 🙂 http://www.MiracleSurvivors.com
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Many thanks for your comment Tami – will be adding your suggestions and examples to my presentation
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Wow. Looks like the points I’ve thought of have been covered by the comments above, but I would like to stress that hearing from those who have “been there” was a huge help with my family and my father when he was battling cancer. There is unmeasurable strength from the source of what others have been through.
Best of luck to you with this Marie. I know you’ll do a fantastic job!
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That’s a wonderful line Patty “There is unmeasurable strength from the source of what others have been through” – I am stealing that one – thank you so much x
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My primary interest as someone with cancer is truth telling, especially when someone asks a question.
My disappointment with blogs has been the relentless social and other pressure on bloggers to “present” themselves in a upbeat, triumphal manner. I recall attending a breast cancer survivors support group where in the inaugural meeting a set of ground rules was established for the group. Rule #1 was to always be positive. I left the group and never returned. The ground rules meant it was impossible for us to meaningfully share any of the dark thoughts, feelings and subjects that is also very much part of what we go through. If the ongoing entry requirement for a cancer support group is a perennially sunny disposition and a requirement that all problems be relayed in an upbeat, positive way, then where is it we can be real with each other?
Blogs should be the one place where those of us with cancer can cast aside socially prescribed reactions to be this or that and just be as wee really are.
Unfortunately, I saw one breast cancer organisation blog where someone asked for the truth about dying from cancer and about pain levels – not one professional person answering told the truth – it was all about how drugs and a palliative care hospital fix all problems. Its pure propaganda in denying cancer suffers the true range of responses.
Another official cancer blog from what seemed to be a prestigious organisation culled one member for saying she did not want a breast reconstruction because she felt no part of her personality, ego, self esteem, sexuality or intellect resided in her absent breast. Her reason which I recognised as genuine, was deemed offensive.
So l enjoy reading other people’s stories – as long as they are their genuine stories and not been through some filtering system that only permits certain narrow emotional and intellectual range. I also get a lot from blogs that are real – where boggers present themselves, their disease and their struggles with it genuinely. Unfortunately the people who sometimes have the free time to volunteer to act as monitors or moderators on some group blog sites only want their own experiences validated by bloggers.
There needs to be a strong commitment to truth telling, free speech and non-censorship.
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Coco, I want to thank you so very much for your comment – it addresses such important points – in fact, so much so, that I think this may warrant a future blog post all of its own!
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Here are my thoughts:
* I have never had the privilege of going to a similar cancer support centre.
* I will read blogs of cancer centers if they are of particular interest to me, especially for breast cancer.
* I would like to read articles on meditation, integrative medicine, how to answer questions from insensitive people who don’t know what to say or ask, what questions to ask our doctors, and how to deal with long-term cancer survivorship issues.
* They could uniquely provide posts from medical professionals of varying specialties to alternate topics in their expertise.
* I don’t have any examples of cancer centre blogs. I haven’t had time to investigate them. I’m sure there are many around the world.
Thanks for asking for our input.
XOXO,
Jan
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This is so helpful Jan – many thanks for your comprehensive answer x
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“What kind of articles would you most like to read on a centre’s blog?”
Not only cancer sufferers, survivors or family read cancer blogs. Some non-cancer related people do read the articles, for various reasons. Perhaps address a few generic topics for their benefit also. So at the very least, they can recommend the blog to friends / family. (Often the language, jargon, emotion goes over our heads)
“What do you think they could uniquely provide that is not provided elsewhere in the online cancer support community?”
Personally I have no idea, but perhaps something on extreme survival, more technical aspects of cancer itself, how it affects the body, other ways it affects the body, mind and emotional well being. Explanations of the different treatments, difference between chemo and radio therapies etc, but of course in a non-clinical way.
Would it be very crude to have a laughter section? Fun place where people can laugh at themselves when things get sombre? This may sound cruel but I believe it would work for certain people, there is nothing like a good laugh in the face of adversity.
My two cents – well done to everyone and your suggestions are great, I feel a bit of a cheat having little exposure to the disease, it’s affects and the turmoil people go through.
Namaste!
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Sorry, forgot to mention, posts on holistic therapies that have worked for people, alternative medications for side effects, perhaps explore other treatments from the Far East, aboriginal, indian, samoan etc??
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Wonderful suggestions – the laughter section isn’t crude at all! I instituted a Smile Saturday feature here on JBBC for as we all know..laughter IS medicine too 🙂
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Hi Marie, I think that guest blogging once a week on topics of interest such as treatments, spirituality, emotional effets of cancer etc (Like what you do on JBBC) would be beneficial. This may evoke conversations betweem individuals who may not have otherwise connected. Also some direction and information for those who have just finished treatment, as there is often a large void once treatment has been completed. A section for those who have been bereaved by cancer may also be beneficial, it may encourage them to reach out to others who may be able to assist them through a difficult period.Just a few thoughts Marie, I have posted your call on my page, so hopefully some patients who have used the services of a cancer support centre will come forward with their ideas on this (after all, they are the ones who have direct experience of this).A blog is a great idea, as it opens up the support services to those who may not be in a position to travel to the centre and avail of the services directly.Good Luck with your presentation
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Wonderful suggestions Sinead – really appreciate your input as I know will the Centre in question.
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You are welcome Marie and thanks for all your support to me to date. It is much appreciated. Please let me know if i can do anything else to assist you.
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This is what I love about the power of social networking Sinead – how we can spread our information nets wider to catch what we need, not just in terms of information, but also support 🙂
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Just wanted to add, thanks for starting this conversation Marie. By asking survivors to talk about what they want to see – including those who have their own sites and or visit lots of other sites, you have a thread going that not only will help you to help the center, but will help all the rest of us with blogs to hit on what the folks we are reaching out to want and need. This thread in itself is an awesome resource!!
Rachel
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Absolutely Rachel! It is one of the most powerful things about social networking – being able to tap into advice, wisdom and support globally – it always blows me away each time I do it!
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Whatever the use of the blog is – to share personal stories of survivors, provide information, etc – it’s important to establish an authoritative, yet very personable tone. You can share information, and be considered a reliable source, with a bit of wit, as well. Because of the nature of a blog, versus a formal white paper or article, it’s important that it’s done in a conversational manner.
If you were at a party, which intellectual would you prefer to chat with and remain with for an extended period of time? The dry one, who regurgitates facts and information but has absolutely no personality, cannot tell a story and makes you want to fall asleep? Or the one who can convey a story that is captivating, makes you care about even the driest of topics, can even make you and the crowd chuckle, and to whom you can relate?
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You are absolutely right Rica – the conversational tone and the human touch is what makes the blog so different from other sources of information we can find on line. Thanks for taking the time to comment .
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It sounds to me as though a blog is a wonderful idea – apart from anything else, people can interact via the comments and perhaps even get to know other people in similar situations. After all, as the saying goes, ‘a problem shared is a problem halved’. I think it is a wonderful idea.
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Thanks Lorna 🙂
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