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By Ali Bodie
Contact the author via Chris Johnstone by e-mail at christopher.johnstone@ntlworld.com

In the beginning it was just me, by myself, terrified, sore, sick, bald, in my wee picturesque cottage up a hill in the middle of nowhere. The flowers faded, the work friends fell away, the true friends tried their best. I tried to make sense of my situation but got nothing but bad news. I was getting chemo in a Glasgow private hospital, shut in a room by myself for hours with only a visit from Dr Death to cheer me (it didn't) and disinterested nurses for a few minutes company.

Luckily I got too sick to continue struggling from Fife to Glasgow, the only handy thing the local breast care nurse suggested on her one and only visit (during which she pulled off my scarf saying "how's your hair" oh horrors!) was that I swap to Dundee.

The difference between BUPA and NHS was marked. The NHS were mean with their medication so I learned to be sick after chemo (and I mean learned, once it happens you turn yellow on the way to chemo for evermore!) but the staff were a million miles more caring. They came to be one high spot of support for me (apart from my lovely Newburgh GPs).

But the biggest difference was being able to see and talk to others.

My chemo day was changed one month, and on that day I met two others who made a big difference in my life. One was a local farmer's wife called Jean, she was 62, her daughter a medical rep, Jean had mets to bone and lungs. We stayed in touch till her death two years later. The other was the only girl nearer my age I met during that time. She was sitting next to me with her husband, both looking stunned. She was newly diagnosed. I had been given lorazepam to stop my nausea, it has the reverse effect of turning me into a demented budgie. Gill still remembers me displaying my bald head to a roomful of people demonstrating how to tie a glamorous scarf.

We kept in touch and desperately hung onto one another for the rest of our treatment and beyond, without her I think I would have gone even madder than I did.

It must have been fate that threw us together on that day, for although she was married with two wee boys and I was now single and childless she was a nurse in coronary care and I was a medical rep. We were both realists, had the same black sense of humour, and were information seekers rather than deniers.

One night just after our treatment had ended Gill sent me a link to my new PC. It was for a website for breast cancer survivors. We were amazed that so many others were out there, thousands from all over the world including lots of our age and similar diagnosis. In Dundee you may never meet someone with the exact equivalent of your own situation, worldwide there are bound to be others.

The very first thing we learned from our worldwide counterparts was to ask for our pathology reports. In black and white we could see and research our situations, understand, face, feel the fear, accept it and put it aside. We learned so much, we met women with metastatic disease, we learned about the latest treatments and the pros and cons in the middle of the night we could reach out and get the support we needed right then.

As the years went by we lost so many, but although that has been upsetting it has also been enriching, for me it has made it so much easier to face my own death. Online I met Lady Georgina Grosvenor, virtuoso violist, she died at 31 two years ago, I am still in touch with her Mum. Georgie taught me peace, she knew she was going to a better place, she never seemed to waver in her faith or acceptance even during her last 5 months confined to bed, I sleep with her crystals under my pillow. Her Mum sent them to me at my brain mets diagnosis.

Two months ago I idly posted on the site that I was thinking of coming to New York, though I couldn't get travel insurance and needed a kind friend to go with me. It seemed impossible. But everything ran away with itself and I found myself in Manhatten surrounded by the women I'd known online for years. They call me Princess Ali as they reckon I must be posh(?), they organised a wonderful party, a stretch limo, a bard and a prince! Marion Easton, practice manager at Whitefriars in Perth generously came with me. It has a dreamlike quality now, one long pyjama party at our hotel! And New York is great for bling shopping! I came back engaged to Prince Leviathion. And I think I might well go through with it...no point in dying Spinster of The Parish when I could be married to a hunk who does a great line in Smeagol/Gollum impressions (he's an actor).

Support groups whether online or in reality are not for everyone, only about 30% of patients get involved with them. I've listed below the best support groups I've found over the years.

Links to online support:

http://bca.ns.ca/
Based in Nova Scotia but worldwide postings, its busy, friendly, lots of info.

club-mets-bc@listserv.acor.org
Entirely support for men/women with breast cancer metastases.

http://bcmets.org/
Excellent info and support for advanced cancer run by Pete Bevin and well known author Musa Meyer.

bcsupport.org
Probably the most complete support for all ages and stages, also grief support and caregiver support. Busy.

Her2support.org
For those who are her2 (herceptin) positive. Also brain mets details, longest surviving stage 4 woman on herceptin,15yrs. Inspiring. Any question on subject answered.

http://www.cancerlynx.com
Excellent info and articles including my own!

http://www.breastcancersupport.co.uk/index.php
Small informal site, British, great for making local contacts.

http://www.breastcancercare.org.uk
UK based, good but slow.

(When Ali was writing this article she posted a question on her board about the value of online support groups. The response was astonishing and we have reprinted some of them here, as part of WebExtra.

Other hoolet online articles by Ali Bodie can be found at:
hoolet edition 49 - Perched on her Electric Chair
hoolet edition 48 - A Different Holy Aisle
hoolet edition 47 - Swimming up the Aisle
hoolet edition 46 - Support Groups and New York, New York
hoolet edition 45 - Cancer, Attitudes, The Cure... Not!
hoolet edition 44 - Cat In a Bag
hoolet edition 43 - Swimming Against the Tide
hoolet edition 42 - Swimming to the Holy Isle
hoolet edition 41 - Swimming In De Nile
hoolet edition 40 - Breast Lumps and Swimming

hoolet is the magazine of RCGP Scotland. It is supported intellectually, financially and emotionally by RCGP Scotland.

This issue maintained by Robert Hallam.