The Site - From another Perspective

5 minute read time.

FormerMember

18 Oct 2010

I know some of you have far more experience of this site than myself but I still think there are two sides to The Site argument. I only joined the site at the end of May this year so I cannot comment on the old share site or draw any comparisons. What I can do is tell you my view of this site because some of the thing I have seen discussed just clash with what I see and feel.
Maybe some of my difficulty is based on my understanding that the Macmillan Cancer Organisation offers support to those affected by cancer ? It is not exclusive for Patients, some of whom could not enjoy the quality of life they do if it was not for Carers and Family and even Friends.
I have expressed my thoughts before that some Carers suffer more than Patients. I don't intend to repeat my last blog about how much we patients owe to our carers - just the basic facts - they are there for us on our journey and if we do loose the fight then they are left to cope alone in maybe much reduced circumstances. On top of that they have all the emotional issues to cope with. I think that in sharing details of treatment, feelings and perspectives between Patients and Carers we all gain something by seeing a bigger picture - sometimes we may become self centred and introspective.
I do agree with the comments that not all Cancer Patients are terminal and not all Cancers kill. Both the detection and cure rates are improving all the time, maybe not in time for all of us. I have read several blogs recently were people have returned to the site to say that the latest scan results are clear, that they have been for their 3 monthly test and no further treatment is need at this time.
There are current posts on the site now from Ladies undergoing reconstructive surgery or have finished the chemo courses and looking forward to living a new life - so maybe its not just bad news we see posted.
There does seem to be a lot of Patients talking about more serious Cancers and have not been given a good prognosis - but surly they and their Carers are the ones more likely join the site looking for information and support ?
Yes there are posts about Carers going through bereavement - but again with the nature of Cancer and the Site this will be something we see on a regular basis. The people posting this information are 'Friends', most who we may never meet, that we have made on here and we have been on some parts of their journey with them. I do not know of anyone who has been offended by this.
Maybe its scary to the new guys coming on the first time and reading these posts ? If they read on and see the responses that are posted maybe they begin to understand the support the we offer to each other on here ? Cancer is about life and death - that does not mean we can't discuss it or tell others that we ARE LIVING WITH CANCER !
Ease of access to the site - yes Spammers and Fakes can be a problem - if you let them be. I should think all of the guys on here have those emails in broken English offering us friendship and love - just email them back - maybe include your bank details as well ? Not too difficult to refuse the friendship request ! - The fakes - OK maybe a bit of a more difficult to deal with - but my own stand is now, if I had 100% proof then I report my thoughts to Admin, let them deal - less than 100% - then I would rather support 99 fakes than not support 1 genuine person. I am also on Face book - and you get spammers and fakes on there too - its just a fact of cyber life these days.
Maybe there does need to be some sort of tiered access to the site regarding being able to blog or post responses - but what about the new Guys diagnosed a few days ago and maybe still feeling numb, shocked or even in denial ? They pluck up courage to come on the site for the first time at a weekend, maybe the first time they have not had workmates to distract their attention. Does anyone really think they should not be able to read the information, ask questions or just need to talk to people in the same situation until they fill in a form and produce proof ?
Greeting new people - I agree maybe at times we could all do better and more often. I normally spend a lot of time in the Chat Room in the evenings and it is very rare for anyone entering not to be made to feel welcome. There is even a brief welcoming speech pre-prepared to try let them know what the chatroom is about and to try overcome any initial shyness - it is the first time some people have ever been in a chatroom. It is also not unusual for someone to offer the new Guy a Private Chat to just cover some of the main points.

My Blog is not intended to offend or criticise some of the more experienced people on the site, just maybe to say, if you look for positive things about the site thing you can still find them.

It has offered help and support to me and maybe I find it hard to think back to the time before I joined - I know my prognosis has not changed - but my outlook on life sure has !
The share site does sound like a caring and close community so not knocking it - I just never got the chance to experience it.

Hugs Guys

John xx

FormerMember over 14 years ago

Sorry - I thought I'd lost the first post!!!!! xxxxxx
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FormerMember over 14 years ago

Although a member, I rarely used Share, cos quite frankly I thought it was rubbish! When you logged in you saw recent postings, most of which were the "chat" variety, and most of which are still here in one form or another. It wasn't easy to find links to topics about a particular cancer, unless it was one of the most popular, and most topics were dominated by a handful of people and you felt like you were intruding if you posted anything. What Now had a much more user friendly menu, which had different forums for different cancers, emotional help, financial help etc and you could see immediately whether any had been updated.

It not hard to avoid the doom and gloom pages here, they're usually pretty obvious, so as has been said many times before, if you don't want to read it, don't read it!

Personally, I keep to the melanoma group, blogs, and anything that catches my eye.

I think the problem with the "recently posted" menu is that there are so many members, and so many postings, that a new item can quickly be removed from the front page at which point it becomes damn near impossible to find unless it's been posted in a group that you visit often.

So, this ain't perfect, but it's all that we have, so let's make the best of it.

Marsha x
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FormerMember over 14 years ago

I like Marsha was a 'What Nower' I tried Share but couldn't navigate it or get used to it all, so I went back to What Now.

It wasn't perfect, none of them were or can be and I really disliked this site when we changed over (haven't totally changed my opinion now as it takes four times as long to load any page) and I have to admit, I don't use this site half as much anymore. I purely come here to see how old friends are doing, offer advice to those in the same situation as me and cos I am a woman - be nosey ;)

I lost faith in the chatroom a LONG time ago on here and although I popped in a few weeks back and everyone seemed pleasant and welcoming, its no longer for me but it works well and provides much needed support for lots of the users on here.

Yes I have lots of friends from here on my facebook but there are things I can say on here that I can't on facebook, for starters, not all of my children know the true extent of my illness and I have to be careful with who I allow on so as not to make an almighty stuff up! Besides my 'non-cancer related' friends and family don't wanna see 'cancer' this and 'cancer' that day in and day out on Facebook and I am sure thats how it is for a lot of others.

At the end of the day, Macmillan offer this as a free resource and service and we the users have to make the best of it, yes we are all entitled to opinions and many of us have had a grumble from time to time (who me! never lol) but what would we do without it......thats what I always wonder when the arguments start on here and fakes are out with more hatred and force than a third world country military coo taking place.

It worries me everytime it kicks off - will Macmillan just say enough is enough.......we've given you the tool but its never enough for you.

Debs xx
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FormerMember over 14 years ago

Can I just say I tend to ignore the front page of the forums and click through to the various groups that are of interest to me. I don't find this a hassle at all. I am also selective about the posts I read and that isn't a hassle either. This site has been a lifeline to me and I would be devastated if I didn't have it, or rather my friends on here. Caroline XX
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FormerMember over 14 years ago

Hi Guys

First thanks all for taking the time to post to the thread and your contributions As I said originally I have no intention of offending or criticising anyone, I am happy for others to express their view on here even if that is only to tell me I am wrong. I am just expressing my own views. Again if I misunderstood some of the original views about the number of Carers or Bereaved people posting and took this as meaning more priority should be given to Patient then it was down to my wrong interpretation.

I believe that ALL people who been affected by Cancer have an equal right to share the facilities of the site, be they a Patient, Carer, Relative of Friend. in many ways the only subjects we discuss on here are Emotions, just maybe a different emphasis depending on your perspective. There is the emotions of the Bereaved at the loss of a loved one. The Emotion of fear from the Patient who has been diagnosed, that does not need to be terminal - All Cancer are still scary and even carry a stigma, especially if they lack any first hand knowledge. A similar fear for Patients undergoing what maybe either life saving or life threatening surgery or treatments There is the emotion of the Carer who sees a loved one suffering, but feel no matter what they do it is inadequate. There is the emotion of the Patient who gets the all clear or told they are in remission. There are also maybe some of the minor sort when we hear a 'Friend' has had an addition to the Family, or even just enjoyed another birthday that, in the early days, they may of wondered if they would every see.

Not sure about you Guys but I would find it hard to rank which Emotion should be treated as more important than an other !

Reading some of comments on here it does appear that the old menu systems were easier to navigate - but I have no experience to compare, I do not have a problem as to me it is the 'norm'. No one likes change and sometimes we may wear rose tinted glasses when being nostalgic and only remember the better things, like Summers were always better when I was kid and we always had snow at Christmas !!

The main point I was trying to make was that I have found the site as it now to be a life line, as have many others. I have made 'Friends' on here that in many ways I am closer to than some members of my own Family, and I know I can discuss things on here I could not discuss with them. Here we discuss things with people who have been there or are also at the same stage as us. They are in a position to recommend methods they experienced to overcome side effects to various treatments and suggest how we should cope.

Maybe everyone brings what they can to the site and takes what they need, what I am trying to say that we are lucky to have a Mac Family to call on - build on what we have now rather than regret the loss of whats gone. Maybe a bit like life, we can't change yesterday, no one is guaranteed a tomorrow - enjoy every moment of today - live life to the full and look for the positive things in life and you will find them !

'I Believe I Can Be As Happy As I Make MY Mind Up To Be !!! '

Hugs

John xx
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