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St Barnabas: First Visit

In our last newsletter, Liz Fullick wrote about her hospice, St Barnabas in Worthing, West Sussex. We did not have space to include her poem about her first visit there, which is printed below.

St. Barnabas is a hospice and all that that means. I have been there for a look round with my home care sister and to various fetes etc - but to go and stay for a day is different.

To be a day patient you must have CANCER. At the moment I don't feel as if I do - I feel too well.

So many people I talk to associate one thing with a hospice - DEATH. I decided I should come and prove them wrong - and the draw of art therapy is the other reason I am here.

I am sitting here in the lounge on my own feeling rather strange, maybe scared is a better word. I don't like going to new places on my own. I'm far too self-conscious for my own good.

Everyone is very friendly - the nurses, sisters and the other day patients. I soon begin to feel more relaxed and I've been fed and watered, which gives me something to do with my hands.

We chat about writing - good - and I end up playing bingo with the others and having tea and cake before Brian comes to pick me up.

I shall come again.
Liz Fullick
Sussex

 

An e-mail from "down under"
Desperately seeking penpals

I have just recently come across your web site and wish to congratulate you on your friendly yet informative newsletter.

Unfortunately, here in Australia we haven't yet any web pages (that I know of) through which I can communicate with other ladies in the same position as myself. I find this extremely isolating, and hope that you can help me get in touch with some, by either post or e-mail.

I am 34 years of age and was first diagnosed with "extra-ovarian granulosa cell tumour" in 1991, as a 28-year-old. This type of cancer, I was told, is extremely rare throughout the world, and I was not given chemo the first time. Unfortunately it returned again 10 months later and I was given chemo, of cisplatin, etoposide and bleomycin.

Since then I have had recurrences in 1993, 1994 and 1997. On the one occasion when they gave me chemotherapy the tumour did not respond, so it has not been given again, and the only course of action has been major surgery each time it recurred. I did have three years of remission, but in August last year the cancer recurred, due to the fact - or so the doctors believe - that I was taking HRT.

My husband and I won't be having children (even though I still have my womb) because the risks are too great. I would dearly love to talk to any ladies of approximately my own age, for thoughts and support. Do you know of anybody?

At the moment I am extremely healthy and happy, and currently doing a course to train as a beauty therapist; this is a change from my previous career as an administrative assistant. I would love to offer encouragement and support to anyone you feel needs this.

Hoping to hear from Ovacome members. With best wishes,
Sharyn Hellstedt

If anyone would like to contact Sharyn, you can reach her by e-mail on:
bhellstedt@keira.hotkey.net.au
Unfortunately this address is not working at the moment, WEBMASTER

or by post:

Sharyn Hellstedt, c/o Debbie Howells, at the usual Ovacome address

 

Meal times: pleasure or penance?

It is widely recognised that nutrition is an important issue for those with cancer: being "nutritionally well" can help treatment, aid healing and help to maintain the immune system. However, food is more than just nutrients, it forms part of our social life and should be a pleasurable experience.

As a Senior Dietician specialising in cancer care, I see many women with ovarian cancer who are having difficulty with their dietary intake. This may be due to the actual side effects of treatment or anxiety itself can demolish appetite and lead to weight loss.

When you have a poor appetite a large plate of food is often the last thing you fancy and enough to put you off eating anything at all. Therefore, it is usually better to try to take small meals and snacks. Sometimes concerned relatives and friends find this difficult and may insist on piling up the plate. It may help if you explain how you can actually meet your requirements by having six small meals and snacks rather than the traditional three. Meals do not have to be elaborate or involve cordon bleu cookery but can be very simple and easy. Snacks can include biscuits, cheese and crackers, crisps, nuts, toasted crumpets and muffins.

Whilst you may normally follow healthy eating recommendations, if you have a poor appetite, you should basically eat the foods you like. Your body needs energy and it will not do you any harm to eat cream cakes, chocolate or fish and chips, if that is what you really fancy. In fact, foods high in fat and sugar are very useful, as they are energy-dense, and so small portions can still contribute significantly towards your overall energy requirements. If you normally purchase reduced fat and sugar products, try full fat and sugar alternatives - full-fat milk, thick and creamy yoghurts and non-diet drinks. It is also possible to add extra energy to your food and here are a few ideas:

 Delicious nourishing drinks and supplements
A wide range of products is available to suit most tastes, from nourishing drinks purchased over the counter from most chemists and supermarkets to those which can be prescribed by your doctor (some are listed on the right).

Oh no, I hear some of you say, not those awful drinks! But try not to be put off if you do not like the first one you try as they do vary greatly in both taste and texture. Most people normally find one they enjoy. The way the drinks are presented can also really change their taste: for example, a milky drink at room temperature is quite different from one served chilled with ice and ice-cream. If you find the supplements too sweet or thick, you can always dilute them. For example, the fruit juice flavoured supplements can be mixed with water, fizzy drinks or fruit squashes. In fact, why not be adventurous and try some of the cocktails below or even make up your own recipes?

Appetite Boosters
In small quantities, alcohol is not only an appetite stimulant but also a relaxant. So, if meals have become a stressful time in the day, then a pre-dinner drink may be just the ticket. It is always a good idea to check with your doctor, in case any drugs you are taking will interact with the alcohol.

Drugs are also available from your hospital doctor or GP to stimulate your appetite, though these are not appropriate in all circumstances.

More Information and Advice
I hope you find the above information useful; however, if you are concerned about your weight or have any other questions about diet ask your GP or hospital doctor to refer you to a State Registered Dietician.

There are also a number of publications available including:

Overcoming Eating Difficulties, A Guide for Cancer Patients
Hochland Communications Limited, 174A Ashley Road, Hale, Cheshire WA15 9SF. Telephone: 0161 929 0190.

Recipes for Health: Cancer
Clare Shaw and Maureen Hunter, Published by Thorsons, London 1995.

Jane Power
BSc SRD, Senior Dietician


NOURISHING DRINKS AND SUPPLEMENTS

Nourishing Drinks
Neutral, sweet and savoury

Milk-based Nutritional Complete Drinks
Sweet and savoury

 
Fruit-Juice Flavoured Supplements
Fruit flavours

Powder Energy Supplements
Tasteless

 
Liquid Energy Supplements
Neutral and fruit

COCKTAILS

Hot Toddy
200 ml Chocolate Ensure Plus, Fortisip or Chocolate Mint Entera
2 dsps of rum, whisky or brandy

Warm the Ensure Plus, gently add the chosen spirit and serve.

Ginger Fizz
100 ml Apple Polycal
100 ml Ginger Ale

Mix and serve chilled.

After Eight
1 Chocolate Build Up, Complan or Recovery
275 ml milk
2 tbs single cream
4 heaped teaspoons Maxijul
Few drops of peppermint essence
60 g ice cream

Blend ingredients and serve.

 

Good Hope Hospital NHS Trust Support Group

On Thursday 23rd October the BBC 1 Midlands Today programme screened a short news item regarding ovarian cancer. The aim was to highlight the difficulty in detecting this disease and explain to the public about the flexible individualised service we provide to women at our hospital in Sutton Coldfield from the time of their diagnosis onwards.

Seven women, who are all members of the Ovarian Cancer Support Group at our hospital, were interviewed for the programme. Interestingly, they all had a different story to tell about how they were diagnosed.

The women went on to explain how they coped with surgery and chemotherapy and also how much help they received from other patients.

The lead gynae oncology consultant stressed how important it was for any woman who had a change in bowel habit, frequency in passing urine or feelings of fullness or bloatedness to go along and see their GP to exclude a diagnosis of ovarian cancer. Hilary Jefferies, the gynae oncology specialist nurse at the hospital, was also interviewed. She stated that she supported these women by providing written and verbal information, advice and education and visited them at home and in hospital. As she was readily available to the women and their families, she was able to make a difference to their quality of care and life.

The news item lasted approximately five minutes, but was screened during the early part of the evening so it reached a very wide audience. The programme producer remarked how much she had enjoyed meeting the women and visiting the hospital to film the programme. All the women looked very well and there was a great deal of laughter and giggles.

If anyone would like to come to the Good Hope Support Group, they will be most welcome. Meetings are held monthly in the Postgraduate Centre from 7.30 p.m. to 9.30 p.m., on the second Thursday of every month. Sometimes there is a cup of tea and a chat, or maybe an organised speaker. Social events are also arranged.

For further information please contact Hilary Jefferies on 0121-378 2211 extension 3200

APOLOGIES

Our apologies that we have not been able to include in this issue the second part of Dr Ian Jacob's article on Familial Links in Ovarian Cancer.

We shall be doing our very best to include this in the next newsletter

 


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