We often miss important clues and factors in our rush to respond and give support to people and just had a good example of this. We post often when upset and miss mentioning some important things. Profiles often do little to help. I urge everyone to revisit your profile, as we can all help ourselves more. Tell your story completely as YOU wish but also - perhaps as bulllet points - why not highlight a few really key things to help everyone else help you. Some of these may be relevant.
> Could be that you had this before - a new kind of TLC is needed.
> Not having family - or having lost them and feeling alone. Or, being over supported and suffocated.
> Top worries - eg about reaction from, or impact on, children, partner, friends
> Feeling particularly young for this. Or old, even.
> Top things that keep you awake at night.
> Fears, eg of drug reactions or side effects; loss of independence or intimacy... long possible list
> If desirous of meeting nearby ladies for coffee (you would need to add location in that case).
> Also - key capabilities that could help others, if appropriate and if feeling so inclined.
> etc.
You get the idea. No rules, but some helpful thoughts, I hope
Thanks for the tip on profiles. It's really good to be able to read them before replying to posts and questions so we don't tread stormy waters. I find it helpful to be given a location as a ROCC I try to keep an eye out for people in my vicinity and contact them when they join the site. You're right. The profile opens doors to making the support and friendship circles on this website even better.
The only thing I'm really not happy about is the public nature of profiles and posts unless the author limits access to members of the forum only. I feel very uneasy that some of the comments are highly personal, and we have photos to boot, and all this is accessible to absolutely anyone.
I was thinking of asking Ovacome whether we couldn't have just minimal profile information available to the general public and then more detail available to members of the community - or even friendship groups so you are accepted rather like Facebook and therefore nobody can read your posts or profiles without your permission.
I rather think the site might have developed slightly differently from how the architect originally perceived it. This is a forum for friends to have some banter as well as the ability to ask questions about Ovarian Cancer and promote knowledge and understanding. The latter make important resources for the general public. Our banter doesn't and I don't want my work colleagues and neighbours pouring over my posts, questions and blogs. It's one of the reasons I'm generally very careful about what I do put on the site.
Now off to review my profile and update it. wltm like-minded women and have gsoh. It'll be a bit like a dating site! xxxx
V good idea re public restriction on profiles. Why not just total --easier to do IMHO
Always surprised how few use the privac thing when starting blogs. Ask ovacome to make this an option we can choose after it starts too if gets sensitive?
Look fwd to reading your updated profile! Sure it will be amusing too!
Left hand one finger typing as in chemo and pump stops if R hand or arm moves AT ALL
Hope you're feeling fine after chemotherapy yesterday. My last one was a disaster. The needle came out and got the bleach all over my trousers. I had to borrow some hospital scrubs to go home in. It was like I'd wet my knickers at primary school.
I've only changed the length of remission on my profile as I think it's what I want to say about myself for now, and keep the jokes for blogs restricted to the group.
Were you in a corridor yesterday or did you actually get chair in the day unit?
I thing profile amend sensible. I am at mount vernon for the trial and in bed this time -- the corridor issue is at Wexham Park in Slough and that's the one I am going into battle for!
Yesterday ok just 9 hours instead of 15, after spending 4 hours the day prior queuing for early blood test! Ho hum. Anyway: much better and they are hopefully writing the learning and new process I suggested last week into the protocol. All developments good for future, though uncomfortable for me...
Plus it was my last big sesh - the next on 28th is the very last assuming the monster does not return. Ca125 is 24 now. Thank you for asking, that's sweet of you. Your last one sounds rough in clothing as well as body!
The CA125 count sounds excellent. If only the NHS would take advantage of the massive collection of talent they have in their hospital queues and waiting rooms. They should harvest it all but we as patients sit there like sheep in queues when it would be so easy to sort them all out.
I can't believe you were in a queue for 4 hours for a blood test. What are they thinking of!! I thought ours were bad and it's just a half hour wait in an impossibly overcrowded and unimaginative waiting room. Phlebotomists appear from doorway and shriek someone's name who's just gone outside for a breath of fresh air. Fire Alarm goes off every 10 minutes because nobody's thought to hang a big label on the pull-chord in the loo so everyone thinks it's a light switch. Receptionist is over-stretched and grumpy - and there's TONS of paper!!!!! aaahhhhh
It's almost worth having cancer so I an offer to try and sort them out.
Don't you DARE be accepting if these circumstances! Not even in jest! We need you healthy and campaigning away unto the next generation....
The MV people just won their fight for a dedicated oncology phlebotomist, thank goodness, after its funding was pulled ages ago. So I should think for a place supposed to be a centre of excellence!
I can feel a good and hugely PRable list coming on. 100 observed anomalies direct from the cancer patients the givernment says it is prioritising.... Or how ever many we can reach, any round number would work...
100 suggestions for improvement. My brain is already in overdrive.
One, for instance. you have all those people sitting doing nothing except being bored. Everyone likes to volunteer. Give them a job to do while they're there.
Two, make more imaginative waiting rooms with exercise bikes, sofas for chatting, low tables AND sympathetic healing lighting.
..... oh I could fill a blog of 100 suggestions all to myself!
I posted this comment yesterday but I see it has disappeared, I just wanted to say that the "Inner Circle" facility gives people the opportunity to blog about themselves in a more personal way without anyone and everyone reading it, as you choose who yuo,'d allow to read it. (a bit like Facebook) It is at the top right hand side. Love x G x
Thanks Gwyn, I did once look at the Inner Circle and felt it's got a slightly different purpose. From what I saw the Inner Circle enables family and friends to be given a logon and for us to update them.
I suppose we could all start using Inner Circle for our banter but it's another layer of inaccessibility - particularly for new members.
I've just suggested in the first place that the Community Blogs default to Visible to the Community Only' rather than Visible to Everyone. This would protect people who either forget to restrict access, or just don't understand that their blogs are visible to the world in general.
Hey - we're hoping for a pic soon xxxx love Annie Actually
I agree the profiles are really important and it is a shame if there is no profile at all to guide responses. I need to update mine to rapidly receding hairline and ability to be extra for Argos campaign, requirements......blue paint only.
It's due a trim as has stopped growing again and starting to look patchy. I MAY let him shave a tree in it. I don't trust his shaving skills for anything more complex. I do trust mine though so may do holly on his!!
Must admit I was quite shocked when I realised that anyone could log in to the site and read most of what is written. To me this is an exclusive little club where you can pour out your heart and know you will always get support, why would anyone else want to read it? Unfortunately they do, which means we have to be careful what we write, like Annie I wouldn't like to think my neighbours or people that knew me vaguely were reading my posts. I had a bad experience myself an this had made me extra cautious.
I try to read peoples profiles before I put comments on their blog so that i have some understanding of their situation. I have kept my information quite brief as I really don't feel like opening up for all and sundry to read, which is such a shame. Maybe between us we could come up with a better way of protecting our privacy. I totally agree with Annie's comments and maybe we could adopt the idea of accepting friends.
Really I think this has to be open to discussion between us.
Thanks Linda. I rather feel I'd like to ask if there are Members on the Board of Trustees of Ovacome so there is grass-roots input and someone there who is going through the process so to speak.
Is this something for discussion on Members' Day? I've never been to one so I'm not sure whether there's an opportunity to discuss issues such as this one. I value this site so much I'm sad that we feel constrained by the lack of privacy. I guess the big challenge would be to persuade Health Unlocked that changes are necessary. I think Ovacome and Health Unlocked are slightly different organisations.
It would be good to get feedback and advice from other members.
Hey, I've just noticed the green Feedback thingy on the RHS. I could click on that and perhaps speak to someone about the issues here. xxxx
I agree. Maybe a need to open up discussion with health unlocked, the platform provider - amending these privacy things may not be in ovacome's control. Would love someone from there to weigh in I may drop message to one of them directly ref this concern now we have pin pointed it!
Like you Annie I value this site so much, it is an absolute lifeline. I suppose you almost feel like you are in a bubble and can say what you like, but look at those awful internet trolls you read about. To my knowledge we have never had anything like that here. I am always very careful what I put on Facebook, usually trivia which doesn't involve my condition. On the day I was diagnosed last year, December 7th, I posted that it was probably the worst day of my life and I had a big fight ahead. Didn't put any details but was amazed at the response I received, even my English teacher when I was 12! I then private messaged individuals and told them, most have kept in touch and wanted to be updated.
Obviously the office closes today until 2 January, perhaps we should think about where to go from here and who we should approach. There is obviously some confusion as to who would deal with this.
I so appreciate the people who work in the background and make this site possible for us all, it really would be a shame to frighten people away and change the content. I must say Annie as I haven't been to a members days I also don't know if it would be appropriate to bring this up.
I definitely think it is something I need to give thought to, and am quite happy to discuss my personal experience.
Me too -- but understandable it may not be as comfortable for all. I just messaged a couple of the lovely Ovacome ladies to raise this thing about more control though not sure how much they will have ability to do...
Interested in the Facebook thing separately - when did you tell all? I could only bring myself to mention after about five months, and only when people were wondering where I disappeared to. I went right off social media except for this site. Family and friends a d clients knew, that's all til then
I'm with you on that. There didn't seem to be a right moment to post 'hey I've got cancer' in the What's on your Mind' box and the thought of adding a pic of the tumour site would definitely be in bad taste. Facebook seems to me just for lightweight hey-I'm-having-fun posts - rather like those Round Robin letters some people put in Christmas Cards. That's what's so special about this site and why I' like to make sure that people feel confident their comments and banter aren't publicly visible so we can continue to chat, laugh, cry, commiserate and be there for one another.
I think the cancer news sort of seeped out on Facebook from other people's comments over a period of months or a year.
Just read your profile too. Highly informative and moving. How awful for you, to face so many things... But please, please don't burden yourself also with guilt re your husband. I have done that too -- but face it: you would do the same for him, and he knows it. Please focus just on you for now, And try to feel OK about it, too. OK.
but hopefully Lily-Anne you've restricted permissions for your Facebook account so the whole world isn't reading it .... though do beware - anything you do on your computer - emails, Facebook, this site - in a wi-fi area can be accessed with freeware available on the internet. I went to a fascinating talk at the university on how to hack into other people's data and could do it now even with my minimal IT skills. xx
You are one scary smart tech chick, Annie. Would not even occur to me...
I do take huge care on FB though, and with privacy settings. Stay up to date as far as poss - Instagram news very concerning around pictures, for instance
Yes the policy Instagram propose is terrifying but more frightening is that people don't know that this is already happening to some extent.
I'm not tech savvy - just had the most wonderful job for 10 years when I had to find leading academics who had the ability to pass on sophisticated and complicated factual data to 15 year olds and to inspire them to go to university.
My knowledge is therefore no more use than the information you'd expect to get on the back of a match box.
I'm the same reference Facebook and haven't put anything on there, people are wondering if I have just dropped off the face of the earth and I believe slowly the news is escaping via well intentioned people that I am "not well" but I'm not sure if that is helpful or not as I have a very stressy job that has munched a few of my predecessors I have a feeling that they think I am under the duvet for all the wrong reasons! Anyhoo feel that all the points raised are very valid and it will be interesting to see the response from Ovacome and how we can influence change.
In case it helps: if you do a FB post I really recommend to write it offline, sleep on it, then paste in after making any amends. Not a forum for a regretful, 'oops' moment. Just a tip - as I was heartily glad I did it this way, as it made for a less emotional, more informative post that didn't make the world feel like they had to get in touch!
Privacy is something that has crossed my mind, and I have considered removing my picture, or to have one that will not identify me in order to resolve this worry. Though I am not overly worried as I don't suppose anyone who only vaguely knew me would happen to stumble upon this blog and discover my most intimate details, but it is possible I guess.
What puts me off of having members only posts is that I think it may discourage some people. For starters, I'm pretty sure that I came across this site by using google and I cant remember what I searched for but, knowing me it was was a specific question rather than than 'ovarian cancer support group.' So, I was probably pulled straight into a blog where i could read about what i was interested in rather than joining first.
I have also noticed a lot of new people who say they have been reading for months before committing to blogging and some people may be discouraged from using the site in this way if you had to join before being able to read the blogs. I wonder if there are many women who just like to read and never join for whatever reason.
As for profiles, you do have to be a member in order to read the details that are in our profiles, but the pictures are visible on the homepage along with any non 'group only' blogs.
I shall update my profile, as per Sue's original suggestion, and may even change my picture to something less identifiable. I am thinking my scar strewn belly. Anonymous, but informative.
Thanks Vicky -- good additional perspectives. We have alerted a couple of Ovacome reps, and also the platform provider Health Unlocked. It may take a while to disentangle and I honestly have no clue what may be possible.
Your point about the watchers reading away, before building confidence to participate, is particularly important, I think. Thank you so much for that. We will see what transpires...
I listed it as an event actually, for the USO and the second operation, it is available for public view the rest of my account is restricted like photos etc, but my wedding, my children losing family members and breaking my leg are there for all to see, I've never had any problems as nobody can send me messages or friend requests outside of my family and friends group. I'm sure there are much more interesting epople around than me, unless anyone wants to see my new haircut, went for 3 inches off haven't had it this short for years, as part of the chemo prep, and the fact there'll be no more hair dye until May!!
LA
Hi,
Just to add my twopence worth, I actually use the "members only" facility a lot when I post a blog,the reason being that most are poems, back in June we started a blog to post up poems with the idea to get a poetry book together to sell in aid of Ovacome,(although I sometimes feel like a one man band haha) there is no point in posting poems for the whole world to see.. as there'd be no point in the book they could then read them online... so I would ask others that if they post any poems if they could post them on a "members only" blog (please) I do this because not all the poems will be in a book but it gives the option to choose.... also when I write a tribute because of the personal and sensitive nature of the tribute I think a "members only" blog is appropriate.
I don't actually think it is a problem to become a member in order to look for information... I think this is right...there are lots of members that haven't got OC but have become members to read the information all the more reason if you have been diagnosed to become a member as the membership is not a big deal.....while I think it might be useful to write a profile I don't think it necessary (so sorry to disagree) I haven't written a profile and wouldn't like to feel pressured into writing one either... and of course the discussion about Facebook is only valid to those that have joined Facebook, I haven't joined that either. I hope you don't mind me being out of sync with everyone else... we are all different... Love x G x
• in reply to
I think it's absolutely fine to have a personal perspective here Gwyn, indeed the last thing we want to engender is a feeling of pressure. Just trying to seek maybe a slightly better balance is all!
S
xxx
Cheers Sue,
Hi Sue,
I know that wasn't your intention...but us old biddies (that's me) is a bit wary of giving too much information, due to the fact that when one gets older people give out too much information haha when I was working (I finished last year) I said to my friend "have you noticed when people get older they talk about their bodily functions more" to which she replied her mum was doing that all the time well I started to do the same except I had no idea it was OC...LOL...love x G x
I have read and thought about this issue. have recently joined you all after a lot of thought. Having has oc for 3years I have avoided steps like support from Macmillan and ovacome that this is the next step down the sell by date road. After having lots of treatments and finding myself sitting next to other patients clients.either in chemo or the he waiting room, I found that someone always had something different to me and you couldnt judge how long people had had oc or what treatments they had had. I used to get fed up, and there seemed no support groups in my area.I have since moved. there were plenty of other groups for other cancers. I have found so much positivity and information. yes there have been some of your friendships that are no longer. I have found the profiles to me invaluable, hopeful informative, different treatments get my little black book out for the OC, and have given me a wonderful boost. I do understand that not everyone feels the same and it is very personal and life is now totally different,when we get the diagnosis. It is hard to stay positive sometimes but I thank you ladies for the hope you have given me. I wish you all a very good 2013 with the hep of all of our professionals in OC
Barbara[
PS Just jad my 27th weekly taxol yesterday and the steriods are working today!!
That's a great contribution, Barbara, thank you so much. Always nice when people join in, and it has to be at the right time and way for them personally. This is such an individual disease, with such deep personal factors and implications... Like you I previously steered away from most group support environments. Too forthright, opinionated, and a bit of a control freak being my problem, I think Ovacome has proved to be very special.
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