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
