Post your ideas about what content you would like to see here
Thu, 16/04/2009 - 08:52
Hello everyone,
As you might have noticed. There are some blogs in the different areas of our community with some specific content. One on updates on survivors support, another one on carers support, there will be one to come on updates for young adults and recently one on sexuality and cancer. The aim of this is to have a series of people that have experience, knowledge and/or access to information that could support the members of our community in different ways.
Some of the other topics that are also planned to be covered via blogs, podcasts and with other approaches include:
Sexuality and body image
Isolation
Independence and autonomy
Supportive cancer care (getting the most out of the healthcare system and dealing with doctors, nurses etc?)
Treatment side effects and fertility issues
Emotional burden and peer support
Relationships (partnering, friendships, having a new value system and who 'sticks around')
Survivorship, fear of recurrence and long-term effects of treatment
Nutrition and diet
Complementary therapies
Study and work
Financial burden and insurance
I wanted to create this this discussion thread to double check if this is an approach that the community agrees is a good approach or if we think our community should not have resources provided by different people working on supportive services via blogs, podcasts and similar?.
I would encourage you to express your views here so that we can always take into account as many people as possible when deciding what is the best content to have in our community and how to provide that content.
Best wishes,
Totocol (aka Raul)
Wed, 22/04/2009 - 05:38
#2
Re: Post your ideas about what content you would like to see ...
Yes I agree wholeheartedly with Nikki's comments! I definitely favour having resources provided by different people working on supportive services via blogs, podcasts and similar.
I think an index of the subject(
covered in these blogs etc would be valuable. I came across Pandora's "Sex problems after cancer" yesterday - a topic which would seem to be particularly well suited to a quiet living-room style blog discussion, but I wasn't able to find any advertising of her blog where it would catch members' attention.
If I think of any additional topics I'll post my suggestions here. Looks like you've got plenty of topics to keep you and your contributors busy for the present 
Cheers,
Ed.
Thu, 10/09/2009 - 09:47
#3
Re: Post your ideas about what content you would like to see ...
Hi,
I believe Palliative Care should be a discussion point on this forum not just for those suffering from cancer, but carers.
Wed, 02/12/2009 - 10:47
#4
Re: Post your ideas about what content you would like to see ...
Hi PS,
I think palliative care is definitely an important and sensitive area for discussion. How do you envisage such a discussion to be like? i.e. would you prefer to start this topic yourself, or have a trained Cancer Council staff member to organise and oversee it?
Nikki
Wed, 02/12/2009 - 18:33
#5
Re: Post your ideas about what content you would like to see ...
Hey Nikki
I would love to have a CC staff member organise it. I def think that Palliative Care should be discussed. Sensitive yes, but for alot its reality and especially for carers who find themselves in the position of having to take that next step.
Frankly Palliative Care or end of life care is not up to scratch in Australia, Only if we talk about it and share experiences or information will be able to face this more comfortably if and when the need arises.
Cheers
PS
Sun, 13/09/2009 - 17:04
#6
Re: Post your ideas about what content you would like to see ...
Just something that came to mind when writing for the writer's group and the thoughts expressed by others at times- perhaps some thoughts ideas on what happens when chemo (or radiation) finishes?
Where do you go and what do you do when you have to try to be "normal" (there's that word again) after treatment.
Some help on the expectations of ourselves and those around us would help people and they may then not find themselves in the semi-lost situation I have been in.
Samex
Wed, 02/12/2009 - 10:51
#7
Re: Post your ideas about what content you would like to see ...
Hi Samex.
The so called 'normal' theme pops up so much for us cancer patients who are trying to adjust to a new life after or with cancer. The same can be said for our carers - life changes dramatically for us all, no doubt!
Am I correct in implying that you are asking for the Cancer Council to provide some information resources around this topic and then be available within this site?
Nikki
Sat, 05/12/2009 - 09:44
#8
Re: Post your ideas about what content you would like to see ...
Hi,
I agree with these commons. I had a few suggestions too.
Would it be possible to have a discussion on developing coping strategies for living with uncertainity, anxiety, depression and creating hope both for people undrgoing treatment and people who are on long term follow up. Would the Cancer Council consider approaching Beyond Blue to run some information sessions (on line or face to face)on dealing with anxiety and depression?
There aren't many resources that focus on issues of survivorship, late effects follow up or cancer in young adults developed in Australia. Nikki started a link on this website that asked people to list resources that they found helpful. Would it be possible to provide a list of reputable websites (Australian or oversease) that provide resources on these topics.
As more people are now surviving cancer would it be possible to begin providing resources (discussion forums online or face to face)on keeping well once treatment is complete. I think there needs to be a focus on this particulary for younger adults that have completed treatment (perhaps someone from ontrac@petermac or Priscilla Gates who is a clinical nurse consultant at the late effects clinic at Peter Mac might be good people to approach about these topics).
While I was undergoning chemo and radiotherapy I decided that I wanted to change careers. I would have liked to have had some information and support on making career changes and returning to tertiary studies.
Lastly, would be possible to provide transcripts of forums that are held on this website. I wasn't able to attend the forum on complimentary theapies that was run a few weeks ago. I would have liked to be able access a transcript of the discussion.
Cheers,
Flight.
Mon, 14/12/2009 - 15:43
#9
Re: Post your ideas about what content you would like to see ...
I am probably really late in jumping in on this discussion, however! I think this post by flight is just so valid. After being at a cancer council place during my treatment i witnessed a huge amount of depression and a huge amount of people that simply were not coping. In some instances the depression and not coping actually impacted on their ability to have treatment. Something really needs to be put into place to help these people deal. I think that a lot of people are just so disenchated at this point in their lives that they dont know how to access help and even calling a help line is beyond them. Just my observations.
Wed, 09/12/2009 - 18:53
#10
Re: Post your ideas about what content you would like to see ...
Hi Nikki,
Been away so I'm a little late in responding.
Yes, I really needed help when I finished treatment and had no idea how to get it or who to ask. Initially just chatting here helped enormously as I didn't feel like such a fruitcake but beyond that some guidance for professional advice such as counsellors/psychologists who are specifically geared towards cancer survivors would have been great. Not sure if CC can be that specific but some pointers and/or resources would have really assisted.
Samex
Mon, 14/12/2009 - 20:45
#11
Re: Post your ideas about what content you would like to see ...
HI Flight, Julkes2 and Samex,
thanks for getting involved in this forum topic and having the guts to say what you want.
I totally agree with each and every suggestion the three of you have out laid here. I have passed these messages onto the site manager, as they are currently looking at new ways this site can assist the consumers.
we should see a reply to these questions and suggestions some time early next year, if not then give me a friendly reminder and i will chase this up for you.
Best, Nikki
Mon, 14/12/2009 - 21:13
#12
Re: Post your ideas about what content you would like to see ...
Hey Nikki
Thanks for taking up on what we have all said. Good luck with it all.
Julie
Tue, 15/12/2009 - 07:15
#13
Re: Post your ideas about what content you would like to see ...
Hey Julie, its people like you that keep me pushing. Its makes all the difference to know that I do not have these thoughts alone!
Nikki
Tue, 15/12/2009 - 07:18
#14
Re: Post your ideas about what content you would like to see ...
Hey Nikki
It is good to know we arent alone. I think that is the beauty of being able to interract with other cancer patients as there is a "knowing" already there. There are things we have in common that simply do not need explaining as such. It is great that we have the cancer council and sites such as this one so that we are able to share not only our own problems or joys but also to perhaps make a difference in helping systems to improve so that other cancer patients may find life a little easier.
Julie
Tue, 15/12/2009 - 16:18
#15
Re: Post your ideas about what content you would like to see ...
Thanks for doing the pushing Nikki.
I hope that you have a great Chrissy with your small person. It's so much fun when they are little!!
S
Wed, 06/01/2010 - 21:26
#16
Re: Post your ideas about what content you would like to see ...
Hi I have had a lot of trouble finding support formy children. They all have suffered in different ways and needed help which I found for them but noone had been directly affected by cancer.
Alana
Hi,
I think that having a site like this set up to provide both information and support will engage more people as in my opinion some users will just want to have a chat with someone else, yet others will want some specific information or know when certain events are on etc.
Additionally, I think that having a series of people who can update knew information when it comes in is vital to keeping the site user up to date with the latest within our cancer community.
It would be a shame to see a wonderful site like this to be used just as a discussion forum, as so many already exist online. I say... lets do something different, effected, engaging and more helpful.
Would love to hear what others think?
Nikki