No scary personal stories - just floating a couple of ideas

Hello - my name is Liz and I've never posted here before though I have been scanning the site for months. I wanted to share a couple of ideas and see if others might feel the same.

I find I have to open this site extremely gingerly. Whist in treatment I do find scary stories of all the things that have gone wrong for others quite distressing. It can put scenarios into your head that you have never imagined and, once you have read them, you cannot un-know them. This sounds extremely selfish I know but I'm just being honest. I think I would feel differently about trying to share my experiences to help others if I were at the end of treatment/in remission.

However, I am interested to follow developments in the field and to learn of opportunities to support Ovacome/cancer patients/contribute to getting the patient voice heard etc.

So I just have an idea for Ovacome. Might the site work better if there were separate fora for news/developments and for people's personal stories? Do other people feel they tread the same minefield?

The other idea relates to patient literature. I wish there were sources of information which were pitched at a level somewhere in between patient leaflets (virtually no information) and academic papers (largely unintelligible). I can understand that many people absolutely would not want to know in detail about the drugs they are taking. But actually as someone who was fantastically healthy, very careful about diet and reluctant to even pop a paracetamol unless in dire agony, I would like to understand more about the drugs going into my body. Why does taking a metal (platinum) work on an organic body? What is the mechanism by which it attacks dividing cells? Why do side effects occur? What is going on in the body to create them? And maybe occasional updates on research: what are the key areas under investigation? What is the timescale for reporting on trials? Are there interim findings. Again: pitched at this mid-way level.

Has anyone found more detailed information which was helpful? Do other people feel this is a gap worth filling?

11 Replies

  • Dear Liz

    I'm glad you've posted and it's great to get to know you more. I feel exactly the same as you about gaps in provision. I too have learned to post gingerly on this site and that means I don't post as I used to. Having an open forum like this means people can't foresee who will read their blogs. Unhappy blogs may well disturb new members looking for reassurance, happy blogs equally get people down if they are in a bad place. Currently there's no way of grading blogs so members can avoid being drawn into a conversation or post that makes them feel uncomfortable.

    I for one have asked if there could be a patient forum to inform the design of this site. There are options available from Health Unlocked with different settings. I think many people would welcome 'area' where we could create a blog and people wouldn't enter if the nature of that 'area' didn't accord with the way they feel. Equally I have felt very distressed in the past that people I've got to know well online come to the end of treatment options and we don't hear any more. I've always felt that's the time I'd most like my nearest and dearest round me, including online friends, to be able to share how things are, say our goodbyes, or whatever. The only way to do this currently is via PM (Personal Message) where you can invite a number of people in to a conversation. I'm not sure whether that's the answer because people might feel they're drawn into a PM and don't know how to get out of it. 'Areas' are one way forward to a problem that members have raised over the course of the two years I've been a member of this forum. I'm sure other members would have great ideas that could be taken forward in order that the site meets as many needs as possible.

    I think you're also spot-on with your appraisal of what's available in terms of literature and online materials. It's difficult to find exactly the right information source. I've become a volunteer for the three London-based ovarian cancer charities and that's been very rewarding. I get to hear about events and seminars that have been extremely helpful. You'd need to join up with each of the charities to receive their newsletters and events listings.

    A number of us who've met via this forum have organised our own get-togethers and this has also been a great way of putting together a programme that like-minded people want. Quite recently MargaretJ organised an event in York where we visited her unit and had a talk by members of her team. It was really insightful and an opportunity to ask an oncologist the sort of questions you pose in your blog. Questions a lot of us would like to ask. Equally the charities put on events which are helpful. Ovacome have a Members' Day in May. I think everyone who attended raved about a presentation by Professor Ian McLeish of Glasgow University, I've attended a visit day to the Hammersmith with a presentation by Professor Hani Gabra organised by Ovarian Cancer Action, and Target Ovarian Cancer organise Be Together Days across the UK. I'm helping with one to take place in Cardiff next May. The more you engage with the charities and give them feedback the more they will respond to patients' needs.

    I hope you'll post more as I enjoyed reading your blog and thinking about it. Just thought I'd mention that the default setting is 'Visible to Everyone' which means everyone! If you want to limit the blog to be visible to 'Members Only' you need to click on the 'Visible to this Community Only' radio button before uploading your blog. That limits who can see the blog to people who've registered. You can edit your blog by clicking on a button at the top-right.

    A great first blog. xxxx love Annie

  • Hello Liz,

    Your post highlights some of the major difficulties of running a forum for people experienced in and experiencing any traumatic event; a difficult task which I think 'Ovacome' achieve remarkably well.

    I think we each have to decide when we are strong enough to read and contribute to such a forum. I really admire those who can do it during early treatment, but personally I didn't even start looking for a network until I was in remission.

    As a participant, one has to keep reminding oneself that these are a variety of people with a variety of experiences of (and this is so easy to overlook) a variey of diseases. It is too easy to feel implicated by the experience of others, simply because you have, or have had, an illness called 'ovarian cancer'.

    I actually relish the eclectic nature of the forum. I don't finish reading posts that I don't feel I can contribute to, or don't come close enough to my experience to interest me, confident that others will respond from their own standpoint.

    As for finding information that matches what you feel you want to read, there is so much out there. I have some authors whose work I find matches my levels and understanding and need for knowledge, and some sources that do too. I think information is a minefield largely because as your journey continues you realise that there is a huge confusion in the cancer field about what treatments work and why, and it is easy just to jump on the bus and hope it takes you to the right destination. I feel it is a matter of reading carefully, and assessing what makes sense from your own experience.

    To 'handle' personal and impersonal information about cancer (especially when it directly affects you) is a very subjective undertaking. I think this forum and Ovacome as an organisation answer many needs in a very sensitive arena.

    Very best wishes,


  • Hi Liz,

    I see what you mean. I preferred the Ovacome site as it was when I joined in 2009, before HealthUnlocked, which is a commercial organisation, came into existence. HU seems to be modelled on the Inspire website, a US based organisation, which hosts the Ovarian Cancer National Alliance, amongst many other similar patient centred organisations. I feel that Inspire is much more open about itself and its objectives than HU is. On InspireOCNA, you will find categories of posts that you can exclude if you wish, tons of personal stories of hope, a lot of medical information, etc..

    As for patient information leaflets, I agree with you. But this is a minefield. Anything published is overseen by a committee, and therefor arguments ensue before anything is published. You can find a lot of information on websites such as Wikipedia, which is compiled by individuals and then checked before it is published. Carboplatin is simply the latest form of a chemotherapy that started in the late 70s, I think, when it was known as cisplatinum replacement therapy, or something like that. Some clever researchers realised that metals, such as gold, are safe in the body and can be used therapeutically. Platinum is a heavy metal, and in combination with other agents that were known to destroy cancer cells it was discovered that it was a very effective way of killing certain cancer cells. For example, take cancer of the scrotum (I know, but that is the male equivalent of the ovaries) - in the 70s, virtually all patients who were not discovered at a very early stage died. It was heartbreaking to watch, e.g. an 18 year old boy slowly die in the cancer care ward. Now, the survival rate for cancer of the scrotum has massively improved, and virtually all men with it survive, because it is so easy to diagnose and obvious to men who have it.

    (I worked in hospitals a lot in the 70s, and I remember we used to have a whip round for certain patients - then one of us would pop out and buy an issue of Playboy or Men Only - what else could we do??? Even matron nodded her agreement when she caught me early one morning running back to the ward with a lurid magazine rolled up in my pocket…) I have to stress that I am not a clinician now - I decided on another career, but there are plenty of clinicians here, all of them much more able than I am to answer any questions you want to ask.

    I'm using story that simply for illustrative purposes. I hope it helps explain a little, you can find out much more on the web. Dr Google is both a friend and an enemy of us all - patients and clinicians alike. I had OC stage 3c serous grade 3 cells in 2009 - I found out to my cost why it is sometimes called The Silent Killer. I decided that it wasn't going to kill me, if I could possibly do that, and although cancer took over my life for a while, I'm happy to be still cancer free more than 4 years after my diagnosis. So I understand and empathise with what you say, but I want to try to reassure you that statistics are based on groups, and there are no statistics for individuals. I have a friend who was diagnosed at stage 4 nearly 8 years ago, and was given a terminal prognosis more than 7 years ago - 3-6 months. She is still alive, still fighting her cancer, working, enjoying her life. I am sure she would be happy to talk to you, if that would help. I am very busy in the run up to Christmas, my husband is off to see his son this week, but I also often talk to friends I've found here on the phone, by e-mail, we meet up for lunch, whatever. My life is slowly but surely returned to a novel normal, though I know I will continue to have check ups for the rest of my life. Best wishes to you, and I hope you will find what you need here. Please try the Ovacome helpline - it is excellent. It was a lifeline for me when I started my treatment, and every so often I still call. Vicky xxx

  • Hi Liz ,

    I agree with everyone so far . I think that the Ovacome site is invaluable in helping all of us in our journeys. I also agree that's its difficult at times as its hard to see others having a hard time , especially as treatment options start to dwindle and I find myself sad about others who are nearing the end.Thats life and I'm a very sensitive , caring person . But that said I've found out so much on the site and started to make some friends as well and for me I've really found its helped me not to feel alone at time with my anxieties .

    Information is a mindfield , and I feel I'm lucky as I can usually sort out in my head what is useful to me or not .Its so difficult to how how to pitch it .

    I like you am really nervous of blogging , mainly as I'm worried I won't express myself well in print cos of my dyslexia or that I will upset someone inadvertently !

    Anyway just wanted to say hello ,

    Dy x

  • Hi Dyana..

    I think it's hard to pitch things and people basically express where they're at ... . like you and others, I find it very sad when people who I've known here just disappear and it may be that they're fit and well.. but nobody really knows. That's another difficulty with a site like this. When someone who's had many treatments talks about how life is, it can make uncomfortable reading which is why I don't go into detail often, but then, on the other hand, for those who are at a later stage, it can be so upsetting to see others who are at a curable stage appear just as upset as people like me when I feel that they could just give themselves leave to forget they've even got it. Then I remember that it is just as upsetting as some don't know what the future may hold and that they're in a different place. Added to this, some people who are diagnosed at an early stage give their time and lives to helping others as they have gained an insight into how it feels. To them, I'm very grateful. We're all a hotch potch of people and in the main, I've gained far more from being on this site than I have lost. This illness is a rollercoaster and sometimes my feelings are so raw that I can't deal with people in general let alone anyone here. However, what I've found is that others here no matter whether they have the disease or not, are very straight forward rather than being uncomfortable about talking cancer feelings. I find I try to protect my family from it all without shutting them out but it can lead to being isolated in this journey. Love Tina x x

  • The site is invaluable, I think passing on my experience with Sandra,s rollercoaster ride is important. The good times as well as the bad times is for the benefit of all, expressing her treatment options, her side effects, her scan results and now her journey after chemotherapy is no longer an option we are now experiencing the next phase through the use of hormone therapy. Although I joined this site earlier this year her journey started in 2009. I have tried to tell her story as it is, the good bits as well as the bad bits, some of it can be useful to others. Love Paul xx

  • My thoughts as someone at the beginning of this journey. I too have found it incredibly difficult to gain information and support needed and not traumatise myself at the same time. I feel this is a dilemma on most sites. Personal posts are just that individual at that moment in time, good bad sad and It's up to me to judge and control what I can deal with at any given time. What I have gained is the understanding/ support and willingness to reply to posts that users give to each other at least you do feel your not alone in this nightmare. I agree that up to date information in progress advances in treatment would be gratefully received, to me it feels like there is little progress being made but that maybe because I not looking in the right places.

  • Hi there: thank you for posting. I was diagnosed December 2012 and only started being able to read and post from June onwards this year. I needed 'head space' to deal with what had happened to me, before I could read the stories of others. But I am so glad I did!

    Occasionally there's a question or a post and I think: yes! I can identify with that/give advice. I felt very alone during my treatment because of my age (35) and I don't want anyone else to feel that way. Often I think cancer is more the battles in the head than the body!

    I recall getting some literature from Target Ovarian Cancer and saying to my mum: 'I wish I had this at diagnosis' there is a paucity of information at the patient level, but there is some-if you look (another debate/challenge).

    When I do post my own questions or posts I find the responses supportive, informative and it's good to get different perspectives.

    I like the different mix of questions and posts covering every element of OC and life: please stick with it, I'm sure that you find something, like I did, which you will be able to contribute to and know that you're being supported to.

    Much love x

  • Hi Liz,

    Firstly I wanted to say a warm hello and welcome though I'm really sorry that your circumstances have caused you to find this site. It took me about six months of reading posts before I felt emboldened to post and in the early days I tended to use the search facility to find specific posts rather than reading everything. The search tool has been offline for a while but is now back which I think is great!

    I can really relate to your wish for information at a more in depth level than leaflets but that is accessible to those of us who don't have medical training. I remember quite clearly desperately wanting an 'A level textbook for cancer and chemotherapy' which would have been about right for me! My oncologist did find some papers for me that we're relevant to my particular issues and diagnosis so that I could just read the abstract and conclusion which as an English graduate was manageable!

    I also agree with you wholeheartedly that it would be good for the site to have some sections to sift the posts and questions into eg just diagnosed, for younger women, developments, light hearted stuff, for carers and loved ones etc etc and have made this suggestion. It's a feature of a many other online support communities and as none of the areas are closed there is no restriction to where one goes but equally well it enables the reader to be selective about what is relevant and appropriate for them at the point in their journey they are. It's not a criticism, just a suggestion for improvement and one I have raised.

    There is however a massive amount of knowledge, care, experience and generosity on the site and if you feel able, asking a particular question or blogging about where you are up to may provide the info and experiences you want to hear about.

    It is such a shock to the core of one's identity to be suddenly thrust into complex medical treatments and diagnosis when previously well and healthy. Many of us like you would have said we we're fit and living well and may not have had any previous experience of hospitals, drug regimes etc. It is a bewildering time when first diagnosed as if we are so minded, we try to understand what is happening when probably we are least able to make sense. However as I think most will agree, you will find your way through it all- there are many women who have done so already and then have moved on with their lives as well as others who generously continue to post as well as the nurse-led telephone support line which I know many have found invaluable.

    So wherever you are up to, I wish you well and hope that you will find the site and it's members a source of strength. I was only talking to a rather fabulous and feisty woman who I 'met' online and then in person and she so rightly commented that one of the few good things that comes out of this **** diagnosis is the fabulous people we meet!

    Wishing you strength and hope, Sxx

  • Ashamed to say I avoid reading this site because a lot of the info is a downer for me., not saying what's here is wrong, but I am looking for more factual reading that may be of benefit to me and my situation. Just sayin". Thanks for the honesty of those who posted before me who put my feelings into words.

  • Hi Liz,

    You make an interesting suggestion and it is one that has been suggested before. The thing is, as others have suggested, everyone is individual. We all have different needs, different wants and different aspirations. Our hopes and fears are individual to ourselves. That being the case it is impossible for any forum of this nature to be all things to all people. What it can be, and is intended to be, is something for everyone affected by this horrible disease. But enabling that is down to the membership. The forum is administered very lightly and admins only tend to become involved when things get really out of hand. It is for each of us to be aware of the feelings of others when we post and respond to blogs. It is of course, a tightrope at times but, the one thing that connects us all is Ovarian Cancer. As such, this forum is a place we can all come to connect with people that have some degree of understanding of our situations; an understanding that perhaps isn't available to us anywhere else. We can help each other through kindness, understanding, encouragement, empathy and advice when appropriate or requested. Yes, there are various views and we can't possibly hope to agree with each other all the time. However, what we can do is take what we can from the site and equally return the favour and give back when we feel we are able. This site is a lifeline for many of us, both those with OC and their families and friends. I have said before, it is the all inclusive attribute here that is unique to this particular forum; the variety of experience and perspective is invaluable to understanding and coping with this disease and someone, somewhere here has been there, done it and got the Tshirt. There are other sites that offer different things and I am sure that most members visit those places too... and that's fine. For me though, although I do find some posts distressing at times, I would not change a thing here. The fact that so many people take great support from the forum is an illustration, that as it is, it serves a very valuable purpose. If something isn't broken, why try to mend it by changing it? That said, I appreciate your view and welcome you warmly to our community.

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