Hello Helen,

I had been through hundred of sites after having completed my treatment where I could recieve some answers to some questions. I had written my story and when I found the MCF site, I found it to be the ideal place where I thought I would get my answers. In course of time, I merged in and made myself a part of the family and was accepted with a lot of love and affection. I found that talking about what is bothering one person, gives tremendous support when you have so many people who try and solve your problem.

Prior to joining the site, I was never ever keen on joining any site as I wanted to forget about the bashing my body had taken, but seeing others with so many problems, drew me to this site. I try and make life a bit better by doing funny stuff, writing jokes. I feel humor goes a long way in a fast recovery.

Besides learning more about my cancer, I was able to learn about other cancers - some which I had no clue about. I liked the way everything was discussed by all and with Dr. Joshi joining in once in a while with some leads.

Well, I guess you have my answer and if there is anything else you would like to ask, feel free to ask me and i shall revert accordingly.
With warm regards,
Ananth

There are so many things that the health system could do better when it comes to cancer, and, I suspect, other serious illnesses.

The main things I found were:

1, If you dont ask questions there is a serious lack of info, even from your cancer team to an extent. The trouble is that in the diagnosis/treatment stage you and the people around you are in such a state of shock that you can barely think, much less ask questions.

2, Getting help mentally. I really struggled with the mental side of cancer for a while (nobody told me I wasn't immortal ) and found the support I was offered was pretty crap. I would not settle for a useless counsellor and every time I was given one I would go back to my GP an insist on getting a decent one. I had three and then I got referred to a clinical phsycologist just to shut me up. That worked ok but I dont think I would have got one if I had given up with the first counsellor and not gone back to my GP. Sometime it pays to be gobby lol. I've started a counselling course recently because I know what a crap counsellor is like and think eventually I will be able to do a better job of it than the ones I saw.

3, There needs to be more specialised advocates to deal with the benefits system. We were turned down for just about all the benefits we applied for apart from the basic ones and it took a hospice social worker and my MacMillan nurse to reapply and get us sorted. A decent advocate could free up the valuable time of a MacMillan nurse or social worker.

That's it really. End of whinge. I'll have to go and lie down for a couple hours now, that's the longest post I've ever written . Hagg.

I agree Hagg,my parents had the forms to fill in for attendance allowance and a disabled parking sticker 5 months ago , but they are SO bloody complicated that they still aren't filled in!! Someone in the know who could guide them would be very welcome, they have enough on their plate and I suspect that the system seems to like that!

Aspects of the coping experience that were helped by the on-line support group were:

1)As Chloe has said: hearing about other people who have had similar experiences (often, in fact, much worse than mine) and have come through them/are surviving.

2) Being able to ask questions that I may not like to/get the chance to ask my doctor and get responses from other forum members and from Dr Joshi on occasions.

3) The general kindness, friendliness and good humour of everyone on the site.

I would echo the suggestions for the Health Services made by others i.e. improved communication and more information. What I found particularly hard was, after initially being told that my operation would take place "within the month", then not hearing any more about when it would be and getting more and more anxious, thinking that I had been forgotten and that my cancer would be spreading. Eventually my husband got me an appointment with the consultant who went and looked at the operating list and came back and told me the date. I realised that they had more pressing cases to deal with and I could cope once I knew when my operation would be (even though it was actually more than seven weeks after my diagnosis) but what I could not cope with was not knowing the date and no-body thought to keep me informed or realised how anxious not knowing this would make me feel.

I agree with Hagg, too, about the general lack of psychological after-care for people who have had cancer.

I think your suggested conclusion and proposal for further research are spot on!

Regards

Gwyn

Dear VJN, please get those Attendance Allowance forms filled in as soon as you can, the sooner you get them to the department,the better. Your GP practice should have a District Nurse or a Health Visitor who will be happy to help you fill in the forms, they will also explain about the Special Rules which also can apply. Failing that, the citizens advice bureau would also help. Fran.

I agree with Fran VJN, I know GP's are busy but never be afraid to go and see him/her for any problems you are having, they may get sick of the sight of you but it does tend to get you referred to people that can help. If they dont see you they will assume you are coping ok. Hagg.

I should have clarified, you dont need to make a GP appt. to access which ever member of the team you need to speak to. Just phone the receptionist & they will connect you to them. By the way, you can fill the forms in for your Parents(with their permission) All the best, Fran.

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

You can get pretty lonely coping on your own. No one who hasn't got it really understands what it's like. When I was struggling there was no web site - I would sit up in pain at night looking across the web and if I'd found this I would have been very happy - okay O take the point someone else made, maybe a buit more worried - but maybe niot. I don;t know about that. You do find negative stats and bad stuff everywhere on the web, not the support and positivism though. How great it would have been to read Ananth when I wa suffering!
Having been unbelievably fortunate I do want to try and help others cope, even if just cheering them up with my appalling spelling mistakes.

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

It had made me much more knowledgeable and understanding. And very thankful I have not suffered as much as others - these people are amazing.