Seeking support and information

Self-help groups and even the Internet can provide health-boosting support for cancer patients as well as some uplifting moments, as Catherine Kalamis found out.

HAVING cancer can lead to some unexpected, and occasionally, uplifting meetings and moments.

One of my best has been getting to know another Cathy. When I was diagnosed with neuroendocrine
tumour, the rarity of the ccondition meant that there were no fellow sufferers whom I could easily connect with in the island.

Support groups can provide a huge health-giving boost - it's a place to acknowledge, share and offload. It's where you can feel less alone and happier, perhaps, knowing that you aren't the only one. And it's also a source of useful information about treatments, or centres of excellence.

When you are diagnosed with a rare condition, it's very easy to feel isolated -especially in Guernsey.

So I sought out the only support group that caters for Nets patients - called Living with Carcinoid -which is based in the UK. Set up by the husband of the late TV producer, Liddy Oldroyd, who was a Nets sufferer, it sends out information packs and the occasional 'keeping in touch' emails.

At first I thought it might not be of much use to me being here in Guernsey. But I have been proved very wrong and can now highly recommend making contact with UK support groups to anyone living locally with access to the Internet.

By far the most valuable work of this support group is the links it creates between fellow sufferers especially as we are spread thinly, it seems, the length and breadth of the British Isles.

I regularly get emails from the group asking 'has anyone has this experience?' or 'have you had that sort of treatment?' - if so, then so and so would like to hear from you.

For a while I corresponded with a Nets patient in Northern Ireland, who also felt out on a limb because there were few fellow sufferers in her area.

Then I was electronically introduced to the 'other' Cathy.

She contacted the group asking to be put in touch with fellow sufferers of around her age.

I seemed to fit the bill so pinged her an email and so began a helpful and uplifting correspondence.

Over the Internet, we seemed to click.

In an early email she wrote: 'I have truly felt that I am alone with my illness, but now I have had six replies from all around the country and cannot believe how many are doing really well!

'However, I have replied to you first as you are more my age and diagnosed recently.'

In fact Cathy Logan had been diagnosed in the same month as me, there is just a year's difference hi our age, she was about to see my consultant in London and, oddly, it later emerged, she even has the same birth month.

Then she mentioned that she lived in Cambridge.

Another coincidence - I had a weekend visit already planned, so we met up.

It was strangely unnerving meeting someone you had contacted only by email. But as soon as we met that all fell away.

I think we both had a sense that we would get on through our correspondence. And so it proved.

Over cups of tea and coffee, we chatted. Here was support in action, albeit not on my doorstep.

Cathy, it turned out, was a great, spirited woman with a sense of humour and fun that shone through despite our shared health problems. Even the other halves that we had dragged along for the meeting seemed to get along.

Afterwards, she wrote: 'Thank you for sharing your experience with me and it really felt like a kind of milestone to meet another strange neuroendocrine person at last!'

This was a standing joke between us: our condition is strange and as patients we are a rare species.

Then Cathy let slip another fact.

She had been a professional singer and suggested I might like to take a look at her website and 'have a laugh at the 80s hairstyles'.

Intrigued, I looked it up to find that my fellow Nets sufferer was formerly Kathy Ann Rae, a lead singer with the pop group, the New Seekers, which were big in the 70s and 80s.

She had taken the place of Lyn Paul in the 1970s and had toured the world with the band - which had broken records with Teach the World to Sing - the tune that became a long-running commercial jingle.

The group, with Cathy [Kathy Ann Rae was her professional name fronting the band, had backed Shirley Bassey among others and she recorded 10 singles and two albums over 10 years.

It was truly ironic that bad circumstances had led to a meeting and the start of a friendship that I would probably never otherwise have had.

Even though we have cancer it's no bar to fun - in fact, enjoying oneself and having a good laugh occasionally is distinctly therapeutic.

But above everything else our meeting has been hugely helpful. And that is the point.

I can rattle off an email with a complaint about feeling like a pin cushion after the usual round of blood tests and know she'll understand.

And vice versa. Email is superb for instant support because you usually get a quick response.

Cathy, who after the New Seekers went on to a successful career as a jazz singer, tells me in a recent newsy email that she is planning to get into the recording studios before Christmas, despite her health problem, which is a great boost and an inspiration.

And if it all comes to fruition, I'll be among the first to buy any resulting CD - because proceeds could very well contribute to a charity raising funds for research into neuroendocrine tumour.

Yes, we also have that in common a desire to raise the profile of this little-known disease and the cash to fund research into this rare and truly 'silent' cancer.

It's a funny old world. But through Cathy I don't feel quite so alone, although, perhaps, not quite ready to teach it to sing - unlike someone else I now know.

 If you would like to help the Quiet Cancer Therapy Appeal at the Royal Free Hospital by making a donation, please send your cheque, payable to RFHNHST Trustees G311, to The Honorary Treasurer, Royal Free Hampstead NHS Trust, Pond Street, London, NWS 2QG.

The team at the Royal Free Hospital has been involved in the development of novel treatments for these cancers.

The progress in treatment and research will continue with the aim of pursuing new approaches to the management of neuroendocrine tumours.

Cash raised will go towards the development of a specialist oncology clinical trials unit with dedicated facilities for neuroendocrine cancers at the Royal Free Hospital.

This will enable the more rapid evolution of novel cancer treatments not only for patients with neuroendocrine cancers but also for more common cancers such as breast cancer and lung cancer.

THE CANCER CLUB

If you would like to raise any Issues

in the Cancer Club column,

contact ckalamis@guernsey-press.com

or phone 240210

Self Help Groups

The  British Medical Journal has recognised that self-help groups I are an 'invaluable resource'. According to the founders of a website and a reference book collating hundreds of support groups - called Help! - such groups consist of people who 'have direct experience of a particular condition or life situation'. The empathy and sharing of experience enable people to give each other a unique quality of mutual support and to share practical information artd ways of coping with that condition or situation.'

Steve and Julie Garill compile the UK Self Help Group and Support Organisations directory and have built a website.

They say that support groups can replace the traditional support networks formerly given by families. People can be aspired by others' experiences, feel more in control and increase their social circle and they can help to boost self-esteem and confidence. But number one is reducing the feelings of isolation and loneliness.

Help! lists 800 different groups -contact the compilers via the website www.ukselfhelp.info

A useful starting point for details about cancer and support groups is the Information
Exchange, next to Beau Sejour.

If you are unsure how to use the Internet to search for material, then an officer will log on
and guide you through the maze. Wendy Beaven, the manager, said people who were unsure
about certain websites and the information they contained couid ring the office and ask for
help to check them out. Or an officer would advise on how to start making a search of
reputable sites.

 St Sampson's surge y has a special Internet point where patients can access cancer information;
it was set up in memory of Barbara Hoskins, a cancer sufferer. Bulstrode House has a range of
literature available.

 The new edition of the Bailiwick Cancer Guide - released last week

 contains a host of useful websites. Pick up copies from the Information Exchange, MSG,
Bulstrode House or doctors' surgeries.

The Pink Ladies offer emotional, practical and financial support I for women in Guernsey with
breast cancer.

Jo Allen, one of the founders, said being involved can reduce anxiety -'it helps to find out
that you’re fears are normal' and improve the quality of life and, importantly, it's also
a place 'to have fun'. 'Members of our support group get together to make friends and
enjoy life, not just to discuss cancer she said. Bonds are formed that bring comfort
and strength between women as they face the same uncertainties and face the same battles.

Jo said: 'Participation can help individuals to cope better with their diagnosis and increase
their knowledge of cancer and treatment options. Learning alongside women in the same
situation promotes confidence.

'Talks by relevant speakers on cancer, diet, relaxation, exercise, looking and feeling good,
complementary therapies and other related topics can be extremely helpful.

'Women who are better able to cope with their situation can provide gentle guidance and assistance to
women who are having more difficulty: the opportunity to help others in a similar
situation and to give something back. The Pink Ladies also have a 24-hour confidential
helpline and a library of information and offer wigs and wig-care packs.

Jo said: The Pink Ladies do recognise that people react in different ways to the experience of cancer and understand that some breast cancer patients may not wish to participate in a support group. However, anyone who has been diagnosed with breast cancer is warmly invited to join the Pink Ladies for support and friendship.'

Sue Green is the senior cancer information nurse for the charity, CancerBACUP

She said: 'Some people who have been diagnosed with cancer find it difficult to talk about what’s happening and how they feel. They may find it awkward and perhaps embarrassing to discuss their illness with the' family and friends.

'It can ever be hard to talk to the nurses, doctors and other professional looking after then. This is a normal reaction and it's important to realise that there is no "right" way to cope with cancer. 'However, talking about the situation can help people cope with some of the uncertainties or difficulties that may lie ahead. It can also help people have some control over their situation. Many, people find support groups a great source of comfort. Talking to people who are experiencing something similar can help put fears into perspective and reassure them that they are not alone.'

Sue added: 'For people who would rather talk about their worries anonymously, there are national information and support organisations, Such as CancerBACUR that can help. CancerBACUP's freephone helpline Friday, on: 0808 800 1234. Website: .vww.cancerbacup.org.uk The charity provides lots of free booklets and information about many types of cancer.

 Cancer Researh has a useful information site called cancerhelp.org.uk that has information about the disease, treatments and healthy eating.

 One of Guernsey's newest support groups is the Orchidians, set up for men by two prostate cancer sufferers. Co-founder Richard Keen said that around six people were at the first meeting on Sunday. The importance of support groups is being able to talk to someone, one to one, about your feelings. 'You can read all you like from literature but you cannot actually understand how people feel or have coped with it. 'Cancer has psychological as well as medical problems and it can help just to be able to talk to someone in total confidence.

(Reproduced courtesy Guernsey Press and Star)
Article dated 30 November 2004



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