I appreciate all your responses, I find it much more interesting and relevant having personal responses from you, so I've thought up some more questions for you!

1. How/why did you become a member of this online support group?

2. How has involvement in this group influenced your experience of coping with cancer?

Thank you

Helen

It was my mum who originaly found this forum, back when i was first diagnosed. But i didn't feel a NEED for it, and didn't even take a ook back then.

But when i got through my Radio Therapy and was off work i was lonely and miserable! I decided to take a look and was instantly addicted! I didn't feel like such a freak!! Finaly people in the same boat as me. Being 22 when i was diagnosed, the people in the waiting room (mostly in there 60's/70's) didn't really talk to me. But the people on here were great. & i felt i could bring something to the group.

My involvement in this group has influenced my experience of coping with cancer by simply jut being there! When my friends and family are sick of hearing about it - i know the guys on here are there for me. When we want to share a mile stone or a hurdle we've got over - no one else can apreciate it like another cancer patient.

I know there are people on her that relied on the form for every step of their treatment. & the advice on here in invaluable!

Thank you chelle for such a thorough response.
I hope you are doing well at the moment.
I'm afraid I'm still getting used to this site and am never quite sure what to say!

Helen

Helen. I was ten years passed diagnosis when I found the forum but like Chelle says, it's addictive.
Because I've been well for so long now I hope that my sucess in kicking it's dumb ass will help others to feel like there can be hope.
Cancer turned my life around completely and as I keep telling people (and they're probably fed up hearing it) the positives outway the negatives for me massively.
Chelle, read your other posts, I'm glad your business is doing so well, well done.

Hi Helen

I was diagnosed with tongue cancer in August last year, but I didn't find this forum until December when my treatment was over. I wish I had found it much earlier, but when I was searching the internet (before my diagnosis) one of the first things I read was "the five-year survival rate for oral cancer is not good" and after that I was too scared to look for any information again until after my operation when I realised that my prognosis was more optimistic. I then felt more confident about searching the internet and happened upon this site by chance. I wish I had been able to make use of the information, advice and support on offer here all the way through from my first suspicions that something was wrong, through my diagnosis and treatment, because I think it would have relieved some of the stress and anxiety both I and my husband were feeling.

When I joined the site I really appreciated the warm responses and advice I got from other forum members. I think Chelle is right: no-one can really understand unless they have been through a similar experience themselves. You know that whenever you post someone will get back to you very soon and you feel like a member of the community. There is also the chance to offer support and help to new members, which makes you feel that you are contributing a little.

Regards

Gwyn

hi
i found the site by chance browsing through the web after i was first diagnosed.i was warmly welcomed.i had not started treatment but i began to understand where my journey through cancer would take me.they are a wonderful supportive bunch of lovely people on here and have been a great source of knowledge for me. i am addicted to the site and like everyone else on here i always welcome new members but are sorry that they have had to use the site as no-one wants to have cancer do they. shirl xxx

THANK YOU for your responses!
It's great to hear positive feedback and warm sentiments. As a student, we are only really told of the more sinister side of cancer.

I have more questions if anyone fancies it. If not, thank you so much for your contributions this far!

Helen

Ps.
Hagg- pleased to hear you're kicking it!
Gwyn- I hope this site continues to give you what you need
Shirl-excellent point in the last sentance

Hope you are all doing well today

Hi Helen,
I have not had time to read all the responses so i apologise if I am repeating someone else but my major frustration with the whole process of caring for my Dad throughout his treatment is the lack of support we have received from the medical profession! Almost all the info we have found out has been through questions we have asked and research I have done. I have only just discovered this site. How easy would it have been for the hospital to refer me to it OR better still ( as there are a lot of people out there who are not computer literate, particularly the old) produced a pamphlet that gave tips on how to deal with the process and particularly what has worked for others. So much info we have recieved has been so vague, eg. don't use vasaline on the lips, btu no help as to what to use instead! When you are exhausted from all the side effects of the treatment, sitting at a pc does not come at the top of your list of fav activities, but some really useful, relevant information in pamphlet form can be read in bed/while sitting down resting. This forum is going to be GREAT for me to help Dad, now I have found it and Web info certainly has its place, but don't forget those that can't access it! Maybe thats a project for another student...or maybe I'll collate all the info I have found and do it myself if I have the energy amoungst fulltime work/family and caring for my parents! Oh dear, I sound cynical! Sorry, just frustrated and wanting to do best for Dad. Vicki

Hi Helen, happy to answer questions, either on the posting or via private message. Hagg.

Vicki,
I'm sorry to hear of all your difficulties with information. In my opinion this site is really informative, but that is not speaking as someone who is living with cancer day to day. Plus, I have easy access to the internet and it is a shame that people who don't have access or are not confident in using it should miss out.
With my research I need a conclusion and I was thinking of saying that this resource should supplement information from other sources such as leaflets and books (for example) and not stand alone as the only useful resource. An area for future research is more widespread promotion of this site.
What do you think??
Helen

This message has been edited. Last edited by: Helen Sheehan,

Hagg,
Really appreciate your enthusiasm.
I will post the questions here in case anyone else has anything to say, but feel free to send replies as a private message to me if that suits.
Also, any general comments you have re: the site are always welcome.

What aspects of the coping experience was enabled throught participation in this online support group?

(Vicki this one might interest you!) Do you have any suggestions for the health system that might be useful in helping patients deal with there cancer experience?

Thank you,
Helen

I haven't had time to explore this site thoroughly, I came across the American one first, but I am sure that it will prove invaluable, I just wish I'd found it earlier! However, better late than never. As to your question Helen, re suggestions, I will discuss it with my parents and see if we can come up with a list! Anything which will make this negative experience more bearable will be worth while. It is good that you are accessing those who are living through it and hopefully be able to ease the way for those to come. Vicki

Well said Vicki: lack of support we have received from the medical profession! Almost all the info we have found out has been through questions we have asked and research I have done. I have only just discovered this site. How easy would it have been for the hospital to refer me to it OR better still ( as there are a lot of people out there who are not computer literate, particularly the old) produced a pamphlet that gave tips on how to deal with the process and particularly what has worked for others.

Dunno how to do the quote thing

I came here after my treatment and found the support fantastic when I was scared and depressed.Through the group I went from being scared that I was going to die still to thinking "Hagg is here 11 years later, Ananth is still going and others".

I now hope I am giving a bit back by sharing my experiences with newcomers ven though I am not fully recovered. I love the guys here.

What aspects of the coping experience was enabled throught participation in this online support group?
People are honest so you are prepared for what may happen

Do you have any suggestions for the health system that might be useful in helping patients deal with there cancer experience?
I don't think I was told the full horror of what could happen because of the treatment. So be honest with patients.

Love Chloex

PS,
I really agree with Glynn's comment. In some ways I am glad I did not find this site at diagnosis because the statistic re survival make grim reading and I'm sure would have had a really negative effect on Dad, as it is he has remained very positive for much of his treatment- he has been battling this illness for 15 years and I'm convinced that his positive attitude of mind has been a contributing factor to him still being alive. Until the radiotherapy he was still playing 18holes of golf twice a week at 84yrs old!! So... keep the facts on survival rate as positive as possible, but within the realms of reality!!

Yes Chloe, Dad was told he would have a sore throat, his skin may be a bit burned, his saliva may dry up ( he was quite looking forward to that, as he'd been dribbling virtually non stop after previous operations and found it humiliating)and that he may feel tired. Doesn't really match the reality, so when the treatment was over and he feels so awful awful awful, he presumes it hasn't worked and he must be dying- infact its almost preferable to the living hell!! Had he known what to expect, a more realistic discription, he would have found it much easier to deal with.
So Chloe.... take comfort from the fact that my Dad is still with us 15 years on! When he was first diagnosed I was really distressed as my 3yr old daughter wouldn't really remember this man I loved so much and was so important in my life, she is now nearly 20 and loves him as much as I do! There is great hope and I am so pleased I've found this forum to help Dad through this next stage. Vicki x