Spring 2002
This newsletter is produced in memory of Sarah Dickinson, founder of Ovacome.
Letter from the Chair
Hello, Well what a month! April is always a busy month here
at Ovacome. As many of you know, April 8th is Ovacome day, when
we celebrate the birthday of our founder, Sarah Dickinson, with
a day devoted to raising funds and awareness of ovarian cancer.
Once again, we have been delighted to work alongside Lisa Quinn,
Georgie Carter, and the team from Band and Brown communications.
We have been very successful in placing stories across a broad
media base. This year, however, many of our planned events were
postponed or cancelled due to the official period of mourning
for Queen Elizabeth, The Queen Mother, including the first Conga
against Cancer. A hardy bunch of members, having put it in their
diaries, still made the trip to London, and joined us in walking
the route. Many thanks to all concerned, particularly Louise Joly,
who organised the event. It was a lovely day, if a little windy,
and I m really looking forward to a HUGE turnout next year.
I have been delighted to accept an invitation to join the editorial
board of a new magazine, being launched this month. Called I Can,
it is specifically for those concerned with cancer. There is a
fantastic team behind it, and its editor, Jean Mossman, is a great
friend to Ovacome. Jean used to be the Director of Cancer Bacup,
so we couldn't ask for more skilled leadership! The magazine will
be free, and distributed in hospitals, surgeries and by subscription.
Hayward Medical, the publishers, are supplying a copy for each
Ovacome member, and we shall be sending you the first edition
as soon as it s off the press. I hope you enjoy it! Please be
assured that we will protect your confidentiality and no personal
details will be passed on.
May I close by drawing your attention to the advertisement opposite.
We are looking to replace two members of staff. Jo is going on
maternity leave, and I know I speak for you all when I wish her
the happiest of times with her new baby, due in May. Sadly Christine
Kelly has resigned from her post here at Ovacome. The committee
would like to take this opportunity to thank Christine for all
the hard work she has done over the past few months, and wish
her future success. The office continues to be the centre of Ovacome
activity, and as the charity continues to grow, so we are now
looking for more office space. If you, or a relative/friend work
in London, and think you may be able to help, please do contact
me via the office. Wishing you all a happy springtime. With love
Louise
PS: as we were preparing this issue of the
newsletter we heard that some members have already had copies
of I Can. Profound apologies from Hayward Medical for jumping
the gun and also for sending some recent copies in clear wrappers.
It won t happen again!
Welcome to the Spring edition of
the Newsletter. I've been really thrilled to receive so many letters
and articles for this issue; thanks to those of you who wrote
in wishing me well, it was truly appreciated. Well, what an eventful
time for our nation since the last newsletter, Princess Margaret's
death, followed shortly afterwards by Her Majesty the Queen Mother's.
Unfortunately our Conga for Ovarian Cancer on Ovacome Day had
to be postponed, as it was felt that dancing alongside thousands
of mourners queuing along the Thames would be inappropriate.
Some of us still gathered together and completed the walk from
Tower Bridge to the London Eye, holding our Ovacome banner and
handing out to the crowds our Conga fliers and details of Ovacome.
It was a glorious day, quite chilly but the sun shone brilliantly.
We had quite a few children in our party and they were terrific,
they just held out the leaflets for people to take if they chose
to, they showed dignity and respect. I was really proud of them.
As we walked along it was a pleasure to see the Spring tulips
on our leaflets still in the hands of many people. The public
reaction to the Queen Mother's death was just as expected, thousands
of people coming to London standing for hours in the cold in silence,
determined to pay their last respects. It s heart-warming to realise
that our country still cares.
Although by the time you've read this issue the Marathon will
be over, contributions will still be accepted until June. For
our runners - 15 in all - a welcome break from training. The marathon
is our biggest fund-raiser so please support them.
As promised details of the photographic competition are on page
3 of the newsletter or below. The photographs
will be judged on 6th July at the ACM which will this year be
held at The Christie Hospital in Manchester: please let the office
know if you can attend. Thanks go to all our members who kindly
completed our questionnaire. Until the next time keep well.
Frances
On 3rd March Ruth was chauffeur-driven to the BBC studios in
London where she was interviewed for the Six O clock News, about
a report by scientists from the Cancer Research UK in Birmingham.
This report claimed that by using complimentary drugs which target
cancer cells in different ways, tumours could stop becoming resistant
to treatment.
They suggest that anti-cancer drugs work by flicking a "suicide
switch" within each cancer cell. Resistance to the drugs
develops when one such switch becomes jammed. The team focused
on ovarian cancer, which often responds to chemotherapy initially
before developing resistance to it at a later stage.
The scientists removed cells from ovarian tumours, grew them in
the laboratory and treated them with a range of anti-cancer drugs.
Their findings should improve their understanding of cell death
mechanisms.
In the Spring of last year I was asked if I would speak to the press about my experiences of ovarian cancer. Like most people, I am naturally wary of anything involving the press, as what you end up with is not necessarily what you d said! However as it was the run-up to Ovacome Day and meant some badly needed publicity, I agreed. I had two requests of the interviewer, the first was that, if there should be any financial remuneration, it should go to Ovacome. Obviously ovarian cancer does not come in the same league as ‘life with the Beckhams' , so that one bit the dust. The second was that Ovacome got a good plug. I asked for the same for Tenovus, the local cancer charity which had given me a great deal of support, but even though I spelt out the name, they still managed to get it wrong in the article.
The interview was conducted over the telephone by a female
freelance journalist for the Mail on Sunday features magazine.
The interview took about 45 minutes. Believe it or not, it s quite
difficult to know what is of interest or relevance, and what is
not. What ended up was more or less what I said "but not
necessarily in the right order" in the immortal words of
Eric Morecambe! Essentially, it highlighted the subject matter,
and that was the primary aim.
The results were quite surprising. From Ovacome s point of view,
the week following the publication of the article, the office
was besieged with phone calls, and I m not sure that I was flavour
of the month with the office staff! Still the aim was to raise
awareness of ovarian cancer, and it certainly did that. On a personal
basis, I had calls from relatives and acquaintances countrywide
who were unaware that the article was going ahead. The other thing
was that some people locally who had avoided me since my illness
was diagnosed seemed to find me socially acceptable again. I am
sure there will be people reading this article who will be able
to relate to that.
Was it worth it? As far as the publicity and raising awareness
of ovarian cancer are concerned, a very definite yes; but on a
personal basis, I have no future plans to engage an agent and
go in for guest appearances!
Rosemary Williams
Wales
Do you have experience with ovarian cancer (personal, professional, friend or family)? Are you a good listener? Are you self-motivated? Are you prepared to learn some new skills? If the answer s YES we have just the job for you! Ovacome is currently seeking personnel for the posts of Ovacome administrator, based initially at St. Bartholomew s Hospital, London. Part time: hours and schedule have some flexibility.Salary £10.50 ph, reviewed annually.For job description, more information or informal chat, please contact Louise Bayne, via the Ovacome office. To apply please submit your CV, marked ‘Personal to: Ovacome, St. Bartholomew s Hospital, West Smithfield, London EC1A 7BEn 3rd March.
In the Winter issue I mentioned that we would like to produce
our own Ovacome Calendar for 2003: this means that we need 12
photographs. I know we all spend a lot of money on photos - most
of which could actually be binned - but we never do get rid of
them do we? But sometimes amongst the ‘boring ones' there
is a little ‘gem and we pat ourselves on the back thinking
that this one could win a competition.
Well, now's your chance to enter those special snaps. Let's have
a look at them, they may be just what we're looking for!
There s no theme, just send any interesting snaps which look photogenic.
This competition is open to everyone - children, grannies, mums,
dads, sisters, brothers and friends - in fact anyone who has any
contact with Ovacome. And there are some good prizes too!
• A colour TV
• £25 worth of Boots vouchers
• A collection of Chanel perfumes/toiletries
Your snapshot and its negative should reach the office no later
than Friday.
Would you like to:
• Meet other women with OC?
• Share information?
• Give and receive support?
The Seagull Trust is a registered charity offering a fortnightly
daytime meeting at the Kath Locke Centre, Hulme, Greater Manchester.
It has a free car park with easy access.Meetings last one and
a half hours, including refreshments and relaxation, and are open
to any woman whose cancer has returned or spread. Chris is professionally
qualified and experienced at supporting women with cancer. She
can give you more details about the group and put you in touch
with other group members. Telephone 0161 284 7181 We'll be glad
to hear from you.
A 5-km (3-mile) Run, Walk or Stagger for Women, Sunday 1st
September, Hyde Park London.
Join other members, alongside the office staff, committee members
and their family and friends, in walking, running or staggering
- whichever seems most appropriate at the time!
Round up your friends and family too to help us put Ovacome on
the map.
Sponsorship is not obligatory!
Entrance forms can be obtained from:
Flora Light Challenge for Women, P0 Box 1998,
London SE1 8ZW
Or through the office, tel 020 7600 5141
Closing date 2nd August 2002. Last year I applied before the
closing date but as there were so many entrants, they could not
take any more. So please apply as soon as possible, just go for
it! Ovacome T-shirts will be available to all participants, and
nearer the time we will give details of our meeting place.
See you there
On 7th January the BBC carried a news bulletin concerning ovarian
cancer, which covered a report in the British Journal of Cancer
of a study carried out by the Department of Medical Oncology,
Department of Gynaecology, and the Cancer Institute in Rotterdam,
The Netherlands. It reported as follows:
The study investigated the potential of weekly cisplatin and daily
oral etoposide followed by oral etoposide maintenance therapy
in patients with platinum-refractory ovarian cancer. One hundred
and seven patients were entered into the study, 98 patients completed
the induction therapy consisting of cisplatin weekly for six administrations
plus oral etoposide. Of these 98 patients, 38 had a platinum treatment-free
interval of more than 12 months, 32 had an interval between 4
and 12 months, and 28 had progressed during or within 4 months
after last platinum therapy. The study assessed response rates
and time to progression, and also response duration and survival.
Analyses were done on the 98 evaluable patients.
The study concluded that this intensive regimen of weekly cisplatin
plus daily etoposide is highly effective and well tolerated in
patients with ovarian cancer relapsing after conventional platinum-based
combination chemotherapy, including patients who have progressed
during or within 4 months after platinum treatment.
British Journal of Cancer (2002) 86, 19-25.
DOI:10.1038/sj/bjc/6600002
Cancer antigen 125 is a substance that is produced in the fallopian
tubes and uterus. The CA l25 measures a sugar protein that may
be released when cells are inflamed or damaged. CA l25 levels
are usually measured by a blood test. Levels under 35 kU/ml are
considered normal.
Ovarian cancer cells produce an excess of these protein molecules,
as may some other cancers, including cancer of the fallopian tube
or endometrial cancer (cancer of the lining of the uterus).
Occasionally an elevated CA l25 test indicates other benign activity
not associated with cancer, such as menstruation, pregnancy or
endometriosis.
However, in early stage ovarian cancer this molecule may not necessarily
be released. Thus, the test is not an effective screening test.
The CA l25 test may be used diagnostically in combination with
other tests such as vaginal ultrasound, and can also be used to
monitor the progress of patients with cancer. increasing levels
may indicate a recurrence, while decreasing levels may indicate
a response to treatment.
"I feel lucky" I said to a friend on the phone recently
when talking about my experience of living with cancer. My comment
was greeted by silence, I could almost hear him thinking "is
this woman for real?" Given that five years ago I had been
diagnosed with Stage 4 ovarian cancer, had surgery, two bouts
of chemotherapy and a recent check for a lump in my left breast....
Rational thought and blind faith
I feel lucky because the coping strategies I employ today are
the result of rational thought and blind faith. I have arrived
at a point in my attitude to life which I could not have previously
imagined possible; like most people the thought of getting cancer
filled me with fear and dread - that is until I got it.
Initially my ignorance of the condition was spectacular, I went
to my GP and thence to the hospital blissfully unaware of the
seriousness of the situation. I can still see the bemused expression
on one doctor s face when I asked "what comes after stage
4?" Then the process of dealing with the illness took over,
my friends and family were a revelation to me, for instance a
friend from childhood insisted we go to Lourdes last year. I knew
she was secretly hoping that I would improve, but I pointed out
that I was happy to accept what Lourdes had to offer.
Life, fun and spectacle
Needless to say I was not cured but I did have a great time. I
thought Lourdes would be stuffy and very religious, but not at
all; on the contrary it was full of life, fun and spectacle. The
result of that trip was that I finally decided to move to a lovely
flat nearer my relatives. I am busy at present making changes
to my new home, and developing new interests.
I was lucky in my dealings with the NHS; much is written about
the difficulties encountered by many people, but I did not experience
these. From the beginning all my needs were dealt with promptly,
efficiently and sympathetically. My GP had me admitted to the
Royal Brompton within 24 hours of my first visit, and I was diagnosed
immediately and referred to the Royal Marsden next door. In both
hospitals the staff were kind and the support services most helpful,
from rehabilitation through to the Social Services. Given that
this was the first time in my life I had been admitted to hospital
as an inpatient, I feel really lucky to have come across these
two hospitals.
During this period of my life I engaged in a steep learning curve,
one does not always appreciate how much knowledge, skills and
experience each of us has that can be brought into play when dealing
with new situations. Retirement allowed me to take life at my
own pace, what a luxury! Having spent all my life from the age
of four years in an education setting, this was the first time
in my life when I was not subjected to the hectic routine of school
either as a pupil or teacher. Now when I am well I take great
pleasure in seeing friends and visiting places I would not have
had the time to do before.
I do not want you to think that I am home and dry, far from it.
Cancer still continues to challenge and forces me to continue
with my personal development. I have always known that the most
treatment can offer is a remission. My CA l25 marker continues
to rise. In November 2000 I received more chemotherapy which was
partially successful and I know that I will have to have more
treatment in the future. As one of the nurses said to me "regard
your condition as chronic, which means having treatment from time
to time."
Experience can help you
It is amazing how experience can help you through a difficult
time. On the last course of chemotherapy I had to have a line
inserted into my arm. The line and its supporting drugs meant
that I spent an awful lot of time attending the hospital to get
problems sorted out. Thank goodness I was single and could afford
the time. I had made a promise to myself that I would not allow
the endless visits to get me down. I had also learnt distraction
techniques which lessened my memory of pain. Both of these approaches
helped me to put the inconveniences of treatment into perspective.
As I have said before cancer continues to challenge. In January
2002 I found a lump in my left breast which luckily turned out
to be non-malignant. The prospect of having to deal with two cancers
left me - to say the least - downcast. But only for a few days.
Then I made another discovery about myself, I discovered that
I could exert a degree of control over my feelings and attitude.
I came to the conclusion that whether I was miserable or positive
neither were going to change the outcome of my cancer. It is advances
in medicine which will provide the answer.
Label the boxes
If I was to enhance the quality of my daily life, I would prefer
to develop a positive attitude rather than being unhappy. So I
visualised two boxes, one labelled ‘misery' and the other
‘positive' . In the former I put all those fears, doubts
and anxieties which bubble to. the surface and which have to be
acknowledged from time to time. Into the other I put happiness,
contentment, friendship, sunlight - in other words those things
which I find uplifting. I believe that if depression can adversely
affect health, then positive thinking should enhance it.
Personal coping strategies
I feel incredibly lucky to have found personal set of strategies
which help me cope at present. That is not to say that the day
the doctors tell me that there is no more treatment they can offer
I won t collapse in a heap. But that is for the future and hopefully
when the time comes I will again find more strategies and people
to help me cope.
Mary Doyle
Unfortunately the Conga in London was postponed, as our route
would have taken us along the Thames path from Tower Bridge to
the London Eye, shoulder to shoulder with people queuing to see
the Queen Mother's tomb.
However, some of us still met up, meeting new people, chatting
and sharing picnics, It was a chilly day with brilliant sunshine,
and most of us looked quite sunburnt by the end of the day. We
had Ovacome literature to hand out, and the fliers with the brilliant
golden tulips stood out amongst the crowds. It was great to walk
over the Millennium Bridge and on our return watch people as they
read our leaflets.
We passed places of interest, the Golden Hind, the Tate Modern,
the Globe Theatre, and I could hear members of our group planning
to return the following week to see the sights!
The walk took about an hour and a half, some people leaving before
the finish as they were having treatment, and others joining us
en route. Thanks to all those who joined us, it was a struggle
for some, but just great that you came. We had quite a band of
youngsters (children and friends of members and their friends!)
and they did us proud, just walking quietly with our Ovacome banner
alongside the mourners and handing out our leaflets
"We have had a fantastic day - weather perfect - Mowbray
Park pretty - Dunston Silver Band in the bandstand redolent of
an earlier time but bang up-to-date", that s how I summed
up the North East Ovacome Event of Sunday 7th April in an e-mail
to Louise shortly afterwards.
Ovacome members met for coffee last week, as we do regularly,
and everyone felt the same about our event. It was a great team
effort with not one cross word, which shows what wonderful women
Ovacome members are.
The afternoon was exhausting but exhilarating, inspiring, moving
and above all great fun. This year we had more walkers, more support
and talked to more women about ovarian cancer so, whatever the
total of money raised, we feel we did our job.
Last year was our first attempt at organising something like this
and this year was easier because we knew the ropes. Already we
have been asked about next year!
Margaret Borthwick
Dear Shiela
I'm sure I m not unique in that I feel I coped well with my diagnosis
of ovarian cancer and two major operations and many sessions of
chemotherapy.
But I have not coped well with the mental torture of misdiagnosis.
I visited my CI many times with various symptoms which I now realise
were indicative of the cancer. No one thought I had a problem.
One GP said I had wind, another said he couldn't feel a mass.
I was referred to a gynaecologist who diagnosed fibroids. Eventually
I was referred to a surgeon who arranged a week of tests and discovered
the cancer.
I torment myself by thinking about all the "if only..."
If only I had insisted on being examined by a GP or nurse, because
in all the years I visited my GP I only had two cervical smear
tests. If only I had the same chances as my relatives who have
had breast cancer and were referred straight away, had operations
immediately and were under the care of medical staff who worked
hard to give them the best chance possible. If only I hadn't let
my family down. If only I hadn't trusted my doctors to do their
best for me. If only... If only.
My husband and daughters are very supportive and tell me I only
did what many people do by believing that everything was OK because
that is what the doctor said. I try to remember what my mum told
me, "accept the things you cannot change." I do try
not to think "If only... If only..
Diane
Peterborough
Dear Diane
Thank you so much for writing to me. I am sorry that you
had such a difficult time getting an accurate diagnosis. It really
does sound as if you went through a frustrating and painful experience.
I think your husband and daughters are right, you did all the
things that it was possible for you to do at the time. Hindsight
is always clearer - but it is HINDsight. You could not have known
then what you know now. Try to limit the time you spend thinking
about the past. I know that it is not possible to suddenly stop
all the negative thoughts you are tortured by - but you could
begin to reduce their power. How about designating a particular
time of the day that you will allow yourself to think over all
the regrets you have? For instance, you could give yourself permission
to concentrate on the ‘If only...' for fifteen minutes after
breakfast. When the thoughts come into your mind at other times,
tell yourself that "I'll think about that tomorrow morning".
In time, you might supplant those thoughts about the past with
thoughts about the future. Replace ‘if only... With ‘so
what I'll do now is... Maybe your letter gives a good opportunity
of reminding people that everyone has the right to ask for a second
opinion if you are not satisfied with the diagnosis you have been
given. Your letter tells me that you have coped very well with
the diagnosis and the treatment of your cancer. I know that you
will use this ability to cope well with whatever the future holds
for you.
Shiela
Shiela Dainow DCS FBAC has been a counsellor for over 30 years. She is the author of several self-help books, the latest being 44½ Choices You Can Make If You Have Cancer, which she wrote with Jo Wright and Vickj Golding.
|
Why me? Why me? My body cries It only seems like yesterday, I'm sorry to tell you this my dear, It's just not true, my body cries, Three weeks later off I go Scared and lonely I go to sleep Four days later home I go, But thankfully that's not the score, Daily dressings, tender care, Back to the hospital, I do go, But the nurses there are caring and kind, But at night, when I lie awake in my bed, |
But he's fast asleep in a world of his own, Then I think of my friends and my family, Of course I'll be there, you wait and see, Eleven weeks gone since I had my op, Will the treatments work, that I don t know So what the outcome of my life shall be To the doctors I offer my sincerest thanks, Thank you again for all you have done, That the battle is won, I d just like to know, I'm really all right, I've accepted my fate, Life's full of surprises, that we all know, Gill Bond |
Christmas seems a long time ago now as I write this amidst
our hectic preparations for Ovacome Day, but in the North East
we celebrated with a great evening out and we think you should
all know about it! We arranged our meal for the 10th December
at the Sorrento, a family restaurant in Whitley Bay. We also arranged
to meet early in the evening, as most members preferred that.
It then occurred to us that some of us would be travelling through
the Tyne Tunnel in the evening rush hour which meant an extra
early start in case of traffic jams. Joan very kindly offered
to drive Heather and I in her car, on condition that we navigated.
It may also have had something to do with her vehicle being much
newer and more reliable than mine and also not full of dog hairs
etc. I was relieved, as I dislike driving in the dark and it meant
that I did not have to clean out my car that month.
When the evening arrived there was freezing fog in our area and
we set off not knowing whether we would have to turn back. The
two navigators, one in the front and one in the back, both had
maps and torches - and different ideas as to the route - as we
set off into the unknown. Fortunately the fog, cleared as we approached
the coast and we saw no more of it. We found Whitley Bay without
much disagreement and the Sorrento on our second drive-past. We
were exactly on time and received a warm welcome from the owners.
There were ten of us there including Anna s husband who had driven
her over from Brampton, and was therefore allowed to join in as
an honoury member of Ovacome. We had an excellent meal and our
high spirits were lifted even higher by Pat s wonderfully festive
sparkly tinsel, bobbing headgear. It was sparkly gear all round,
following Joan's directive. As the latter had to collect a book
from a friends house on the way back, we took what seemed a grand
tour of the area before making our eventful way home. Thank you
everyone for making our Christmas Knees Up such fun, it was an
excellent evening for us all.
Margaret Borthwick
How the immune system works
The immune system consists of special cells that move around in
the blood and lymphatic system, an army on a 24-hour "search
and destroy mission". They look for alien invaders - rogue
cells, viruses, bacteria or substances we are allergic to. These
special cells travel between the cells of our body, but are mainly
concentrated in our network of lymphatic vessels. They drain into
lymph glands, concentrated in the neck, armpit and groin, and
from there lead into the central lymphatic system where our immune
system is strongest.
Once an intruder has found its way inside the body, our immune
army is alerted. Its troops consist of many different battalions
of blood cells. These include special "scout cells"
that squeeze in and out of blood vessel walls on the lookout for
trouble. Once they find an invader they attempt to engulf it.
If they have difficulty they summon up more troops called T-Iymphocytes.
These ingest any invader they come across. To keep them in check
there are T-suppressor cells, that "turn them off" and
T-helper cells that "turn them on". (The AIDS virus,
for example, selectively destroys T-helper cells which leads to
a relative excess of the T-suppressor cells and to an eventual
weakening of the immune system.).
Perhaps even more important than T-lymphocytes are B-lymphocytes.
These cells have the ability to produce tailor-made antibodies
that stop the invader dead in its tracks. So if you have an allergy
to milk, the B-lymphocytes will produce hundreds of thousands
of antibodies seconds after you drink the milk. It was the discovery
of this, the body s ability to produce a specific weapon to deal
with each invader, that led to the development of immunisation.
When a battle is raging between your blood cells and an invader,
the body turns up the temperature which helps the immune cells
to fight. A high temperature and swollen lymph glands are the
classic signs of infection, coupled with effects of the particular
virus- a sore throat for example, or nausea and diarrhoea. The
consequences are familiar to us all. Headache, excessive mucus
production and coughing are just some of the symptoms of a viral
or bacterial attack. If it s any consolation, the worse the symptoms,
the harder your system is fighting.
Strengthening your defences
By keeping your body s guard up, you can win the war against invaders
before the battle has even begun. You have three strategies at
your disposal. Firstly you need strong walls to keep out invaders,
including viruses and bacteria; secondly you need to maintain
a stout army of immune cells with healthy production of new immune
cells; and thirdly you need to be armed against weapons of free
radicals. Your first line of defence is the skin, including the
"inside skin" which lines the lungs and digestive system.
Many viruses, for example hepatitis and the AIDS virus, cannot
cross the skin barrier and need to enter the body via fluids.
Even carcinogens - substances that are thought to induce cancer,
of which cigarette smoke is an example - are less likely to do
damage if your first line of defence is strong. This strength
depends on maintaining the integrity of your cell walls. To keep
your cell walls strong, you must maintain your level of vitamin
A. Carrots and other orange-yellow foods like tomatoes, beetroot
and apricots are rich in this vital vitamin. So are liver, kidneys
and cashew nuts. Children need more vitamin A than adults because
it stimulates growth and the maturing of the immune system.
Calcium and magnesium are also important for strong cells and
a healthy immune army. These are particularly needed by the elderly
and by post-menopausal women whose decline in oestrogen production
means that calcium is poorly absorbed. Dairy products, while rich
in calcium, are a poor source of magnesium. Only green leafy vegetables,
nuts and seeds provide these essential elements. Vitamin C is
important too. It increases the production of T-lymphocytes cells
and helps produce antibodies and improve their performance. Vitamin
C is also a crucial weapon, along with vitamins A and E, in your
defence against free radical attack.
Free radical attack
Many viruses try to force an entry into our cells. Cancer cells
go one step further and try to destroy neighbouring cells and
take over their space. This is done by releasing a barrage of
toxic and other substances, including "free radicals".
Free radicals are atoms, or groups of atoms, with an uneven electrical
charge. Because they are uneven they try to balance themselves
by stealing an electron from a neighbour. The easiest electrons
to steal are from essential fats that form part of every single
cell wall which then becomes weakened, making it easier for invading
toxins, bacteria and viruses to get in. Free radicals are also
created by eating fried foods, from pollution and smoking. But
nature has devised specific protectors, called anti-oxidants,
that help to mop up these enemies. They are vitamins A, C and
E - most of all vitamin E because it is fat-soluble designed to
protect fats. All natural foods rich in polyunsaturated fats and
oils are also rich in vitamin E. But as we process these oils,
for example in cooking, the vitamin E is destroyed and the oil
left open to free radical attack. So adequate vitamin F is another
requirement for keeping our cell walls intact. One mineral, selenium,
helps complete our defence against free radicals. Although needed
in tiny amounts of 50 mcg a day (less than a millionth of our
daily requirement of protein) it is no less important.
How to boost your immune power
So what can you do to boost your immune power? The answer is a
lot. Many factors are involved in keeping your immune system working
well. Getting plenty of light stimulates the thymus, and exercise
stimulates movement of lymph and boosts the immune system. Stress
causes the release of a hormone called cortisol, which is a powerful
suppressor of the immune system. Pollution can overload the body
s defences, so it is best to avoid additives and eat organic food
where possible. Ensuring that you get a good night s sleep is
also important to keep your immune system in good shape. Diet
is perhaps the most important
factor. Fat and fat-soluble vitamins are transported in the lymph,
so a diet high in fat makes the lymph thicker and less mobile.
Some nutritionists think that an excess of dairy produce, which
is particularly mucus forming, also clogs up the lymph. Fried
foods are doubly bad because they are high in both fat and free
radicals that damage and weaken body cells.
Getting enough protein in your diet is important. Fish, chicken,
beans and lentils are good sources of protein. While eating less
fat and getting enough protein are not too difficult, few people
get enough immune boosting vitamins and minerals from their diet.
Vitamins and minerals are vital for immune power. Many B vitamins,
including B5 (pantothenic acid). B6, B12 and folic acid, are needed
to produce immune cells. In severe B6 deficiency no antibodies
are produced at all! B vitamins are found in fresh vegetables,
grains, nuts and seeds.
Vitamin C is the most important of all. It helps to knock out
viruses by increasing T-lymphocyte production. It destroys many
bacteria. It helps produce antibodies and seems to improve their
performance. All fruit, but especially oranges and kiwis, are
rich in vitamin C. So are red peppers. Vitamin A also strengthens
cell walls, keeping invaders out. Of the minerals, calcium, magnesium,
selenium and zinc are the most important. According to Dr. Stephen
Davies, 'zinc has a profound effect on the immune system responses'.
Zinc increases T-lymphocyte production, the cells that destroy
alien invaders, and helps the thymus gland, the cornerstone of
the immune system, to work. Although immune cells are produced
in different parts of the body, mainly in the bone marrow, T-lymphocytes
only become mature in the thymus gland in the chest.
Today we have a new understanding of
the immune system and its importance in helping us combat disease.
We also know a lot more about how optimum nutrition can help keep
our "defence troops" in fighting trim. Our thanks to
Patrick Holford for permission for this chapter from his book
Optimum Nutrition to be reproduced below. Patrick s book
is available from Ion Press, London. Patrick has also written
The Optimum Nutrition Bible (ISBN 0749918551, price £12.99)
and Boost Your Immune System (ISBN 0749918640, price £5.99)
which can be purchased in high street book shops, or by contacting
Holford Associates, tel 0208 8712949.
Why not enjoy this old time favourite which many of us will
remember from our school days?
Pastry
4 oz self-raising flour
4 oz plain flour
4 oz soft margarine
A little water to mix
Filling
Small tin of evaporated milk
(put in fridge the night before using)
12 oz soft brown sugar
Method
To make the pastry, mix the flours together. Cut the margarine
into small pieces and rub into the flour to make a fine mix. Add
just enough water to make a dough. Roll out on a floured surface
and use to line a 7 in greased ovenproof dish or tin. Bake in
the oven for 25 mins at Gas Mark 5 or electric 2000C.
Whip the evaporated milk until it peaks (like meringue), then
beat in the sugar. Pour the mixture into the pastry case.
Cook for 2 minutes (Electric 1800C or Gas Mark 4)
If you have any quick and easy recipes that you enjoy cooking
and eating, please send them in for us!
I hardly ever cry now. It is a little more than two years since
I was diagnosed with cancer, stage 1, contained within the ovary.
This cancer is usually found at a much later stage because there
are no symptoms. Mine was discovered because I had an ovarian
cyst. The surgeon thought he had removed all the disease but the
cyst had burst during the operation. He could not be sure. Surgeons
and oncologists, working together, decided I should have a course
of chemotherapy because my cancer was aggressive. Treatment was
just a preventative. It gave me a year of illness; nobody takes
well but I took it badly. I couldn't face the sixth and last treatment,
the cancer retreated and I felt safe for a while. Talking with
a counsellor at my local hospice helped a great deal. Afterwards,
at three-monthly checkups, it became apparent that it was consistently
creeping back, not in a steady, level way but snowballing. I was
offered a choice of three chemotherapy drugs: I refused. My husband
John, so dear to me, was horrified, but from that day has not
pretended that I might recover. This was a relief because nothing
would have changed my mind.
Now I see my doctor at monthly intervals. Every interview marks
a step downwards. I take painkillers. I rarely feel ill and I
look well but am so extremely tired that I can do very little.
This means that there is no time for anything I don t want to
do. Each night I assess how good the day has been; if not good
then useful. I aim to do the cooking and washing, John helps me
when I run out of steam. I am fortunate in having so much support
from my family. I still drive along quiet roads but not in the
evening. I am too tired then.
I have rung handbells for twenty years. It is a lovely hobby and
I give it priority. The team practises one night each week, when
I become tired at practice I sit in the corner and shut my eyes.
The team takes notice and they continue ringing without me. Bless
them for that!
December we have seven engagements. I am prepared to rest all
day to ring at a concert in the evening. This winter, for the
third time, I have joined a writing class. Finishing my homework
each week is sometimes considerable effort a but it gives me goal
to achieve and keeps me focussed. I am writing a nativity and
short stories.
It is a joy to see friends.
In July I absailed to raise money for the hospice. Four months
later I would not have been able to do it.I have written a book
of Christmas is limericks which on sale in the shops. It has given
me a lot of satisfaction. Chemo kills off cancer cells but it
damages the immune system too. I am going the other way round.
I am keeping my immune system as healthy as possible. I am in
charge of everything except the cancer, I fancy that within reason,
it doesn't matter which ones you choose. They all improve your
chi, life force and therefore quality of life. All medical people
who look after me have approved (perhaps it would be to say, not
disapproved) of the choices I have made. I am lucky. I use homeopathy,
my therapist is very caring and competent. I am fortunate to go
to the hospice for acupuncture with lovely caring, qualified and
enthusiastic practitioners. Sometimes I feel woozy afterwards
and I sit for a while before leaving but the treatment raises
my energy level. Also there I have access to a dedicated doctor
who specialises in palliative care. The Hospice is wonderful.
Quite accidentally I found a healer. The first time she put her
hands on me, a tremendously powerful healing happened, which took
us both by surprise. I try to see her fortnightly. I take essiac
nightly. This Red Indian herbal tea, thought by many to help people
with cancer, feels very clean. I don t know what it does but it
seems right to continue with it. I am being mothered by a friend
who brews it for me every three weeks. Then there are vitamins.
I take a supplement every day, including the usual ones but also
things like zinc and selenium and apricot kernels which contain
Vitamin Bl 7. The supplement varies in content from day to day.
I go to a meditation group whenever possible. It feels good to
contact the subtle energies surrounding us. It is part of my healing
plan. Occasionally I have an aromotherapy massage which includes
reflexology. This is quite a bundle but if I could only have one
it would be difficult to choose. My recent blood test was satisfactory
and the tumours have hardly grown in the last six months, however
cancer is full of tricks, I can never predict anything. Faith
comforts many people including me. I do not go to church but the
church members pray for me. I am humbly grateful. My
expectation is that life will continue after death and be good,
I am aware of spirituality and have a belief in reincarnation.
This is my philosophy of life and cancer. Even now it has good
aspects. There is no ideal time to leave my husband, sister, children
and grandson. Therefore it doesn't matter when. I am afraid of
becoming very ill, perhaps it won t happen. I expect the tumour
in my liver will be the cause of death. If I am lucky it will
suddenly become impossible.
I have been told that, when the time comes, drugs will help to
shut down my systems so that I can pass peacefully into a last
sleep. It sounds manageable.
I have chosen where to die. Not at home! That would be too hard
for John and perhaps I will feel safer in the care of the medical
establishment. I expect also that John will find my death a little
easier if I have already left the house. I have made a list of
people to inform and their telephone numbers. John would have
argued against it but it is one of the few things I can do to
help at a difficult time.
I have chosen bell music for my funeral. I hope a team will be
available to ring it when the day comes. Naturally I have made
a will.
Honesty is best
I feel trapped by my family s distress. I cannot make it any better.
I don t pretend. Honesty is the best way. I have one problem and
those I love have another. I thought that leaving this life was
all my own affair so I have been surprised to find how many people
wish me to continue. In some ways this is a special time. My death
feels too early. I am mid sixties but the advantage is that I
will be spared aches and pains of old age (that s a blessing.)
This account seems too rosy for reality. I did not mean that.
I am not being brave and if there were any choice I would not
be in this situation. It is in my thoughts all day and every day.
I would prefer a swifter death. I tried to find a comfortable
means of suicide but nobody gives such information and I am assured
that no medics would help. I would not like to hurt my family,
although I think it possible that I could be driven to bringing
about my own death. Occasionally a black mood takes over. Its
intensity is frightening but it doesn't happen if I keep up the
calories. That's a bonus, slimming can be forgotten. I find that
I need lots of food for my body to do running repairs from the
havoc caused by cancer. I consider my meals are sensible. By no
means would I adopt a severe diet. It s too late for that. I carry
chocolate in my handbag as emergency rations.
I feel deep gratitude for all the professional people who have
given their expertise and care so generously and to volunteers
and carers in every field and loving friends. Macmillan nurses
are wonderful and the ladies of Ovacome who have all had ovarian
cancer, are always at the end of the phone. Cancer is a lonely
affair but it is made easier by a host of friends and kindly people.
Although usually at peace there are just a few times when I am
distressed. One has to get over the word ‘cancer' before
one can look at the illness.
I found it difficult to think in the short term. I don t buy clothes
now though I may need different sizes. I still buy plants. The
last time I bought toothpaste I wondered if I would need to buy
more. (I will.) I m continually seeing people and doing things
for the last time. If I get more chances I will happily repeat.
I feel grief sometimes or anger and resentment because of all
the things I cannot do. Can you believe that I cried for my bike?
All the things I planned to do sometime are sorted into two heaps.
They are things to do now and things to forget forever.
Recently our cat left a dead mouse on the doormat so I left it
there for our three year old grandson to find. ‘Who do you
think caught that?' I asked, and from the bottom of his experience
he answered, ‘Grandpa'. It was the first time he had seen
anything dead. He touched its furry head and its stringy tail.
The next week he spoke of death. Will that help him? Will he remember
me?
Editors note: I d like to thank Gwyneth
for writing in and sharing with us her really frank account of
her thoughts and feelings for her future, including the very touching
way she helps her grandson to anticipate death, by showing him
the dead mouse
Vitamin E
I was diagnosed with ovarian cancer stage 3 in October 2001 and
started chemotherapy in December. It has been fine apart from
my fingers and toes which have reduced me to tears a lot of the
time. In a health store I found Pure Vitamin E 1000, I took two
capsules daily (it says take one a day) for two weeks leading
up to chemo, and at last pain-free but still with a little tingling.
I have just started my fourth treatment, and it s been the easiest
one yet. So if anyone is having painful hands and feet
- try it, it worked for me.
My latest CA l25 was 9.6 so I am also celebrating. Thank you to
Louise my Fone Friends contact for all your advice and support.
If anyone in my area wants a coffee and a chat please phone me
on. 01323 890749.
Joan Mechen
Seaford, East Sussex.
Doing more
I've been reading your newsletter since my lovely mum Kate was
diagnosed with ovarian cancer. Sadly I lost my mum in July 1997
but have continued to read Ovacome ever since. Ovacome Day on
8th April, would have been my mum and dad s 30th wedding anniversary.
My dad, brother and I are going to celebrate - as that would have
been what mum wanted - with a lovely meal in a new restaurant
overlooking Liverpool s waterfront - a place my mum loved. I enclose
a photo of my mum and dad on their 25th anniversary (the last
one they spent together) and would really appreciate if you could
print this.
Like many people who have lost loved ones through cancer, I would
like to do something to help, I have done some voluntary work
and fund-raising for our local Marie Curie centre and the Linda
McCartney centre in Liverpool, and feel I would like to do more.
Therefore I would be grateful if you could inform me of any events
I could help out with.
I continue to keep up with the developments in fighting ovarian
cancer through the newsletter, and am particularly interested
in reading other people s stories.
Julie K Edwards
West Derby Liverpool
Editor s Note: if anyone in the Liverpool
area needs a partner to help in either fund-raising activities
or raising awareness, please do not hesitate to contact Julie
through the office, let s not waste her experience.
Health insurance
I write in reply to your comment after Peter Walsh s letter in
the Winter 2002 Newsletter, regarding private health insurance.
I was diagnosed with ovarian cancer by my GP, after having had
a scan arranged by him on the same day I first saw him. He then
arranged an appointment for me to see a consultant five days later.
From this clinic I was admitted to my local hospital, straight
onto a ward, all this in six days under the NHS. At that time
my husband and I had contributed to a private scheme for 11 years,
and during the wait to see the consultant I phoned them to see
if they could help. The reply was that nothing could be offered
as I could not wait six weeks for treatment. No sympathy was expressed
- and I have never spoken to anyone who has been so cold, and
this at a very vulnerable time. Surely sorry would not cost a
private scheme any more! Needless to say our contributions to
any private insurance schemes have ceased, and after 22 days in
hospital, chemotherapy (Carboplatin) and a great deal of support
through the NHS and our local hospice, I have recently been put
on three-monthly check-ups and I m feeling very positive. Recently
I read of a lady who had a small lump removed and luckily the
results showed this to be benign. The same private insurance scheme
would not pay for her treatment in a private hospital because
it proved not to be a cancer, when do they pay, sometime... never...?
Joan Cobden
Chichester
DR-70 test
I was most interested to read of this test in the Autumn Newsletter.
I straight away rang Mr Evans, Managing Director of DR-70 (UK)
Ltd, and he sent me a leaflet and my ‘nearest centre details'
which was in Manchester. I straight away rang Dr Michael s secretary
for information and was informed that he did not do the test.
I wrote to Christopher Evans with the above information and to
date, have not had the courtesy of a reply. We have a computer
at home but unfortunately, as yet, no website.
Although Dr Michael s secretary informed me that her boss did
not do the test, funnily enough she could tell me that his fee
was £80, and that it cost £75 for the test. I thought
you might be interested in my experience and wonder if anyone
else has had the same treatment!
Margaret Llewellyn
Barnsley, South Yorkshire
Hair removal
Please would anyone be kind enough to tell us if there is any
cheap, safe way for hair removal. We have sensitive skin, do not
take any tablets or HRT, but are very worried about the hair on
our skin and face, which is really bad, but we're too shy to write,
please help us (we are in our 70's).
Anonymous
Travel Insurance
My wife was first diagnosed at Stage 3 in August 1997. She had
chemo, surgery, more chemo and in early 1998 was officially pronounced
‘in remission' . She regained her strength and was feeling
100% when, midway through 2000, her CA l25 and a CT Scan indicated
new tumours. Further chemo was advised and this proved beneficial.
The CA l25 is again creeping up and almost inevitably yet more
treatment will be required before long. Right from the early stages
of the disease, whenever it has been possible, we have alleviated
some of the trauma by taking holidays. These have ranged from
two or three nights in a quiet hotel a couple of hours drive away
from home, to full-blown 1 5-day jaunts to the Caribbean. While
not really an issue for the short haul trip, we do not feel inclined
to travel too far outside the EU without insurance. We recently
found that it is becoming increasingly difficult to find a sensible
price and/or cover. We had arranged two weeks in Tobago on a freelance
basis and set about tracking down insurance. Once we had declared
my wife s situation the responses were generally along the following
lines:-
• sorry, we don t cover for such preexisting conditions,
at all (even if the claim is for a broken leg)
• we can provide standard cover at a standard price but would
exclude any problem related to cancer.
• yes, we can offer you full cover for £3,000 (bear
in mind our entire holiday cost less than that!)
• yes, we can offer you cover for £33, but there will
be an excess of £5,000 and maximum cover of £50,000
(standard cover is usually £5-10 million!)
We continued to phone around. Eventually we found just what we
wanted. The premium was somewhat higher than the norm - around
£68 - but provided my wife could arrange to have a brief
questionnaire completed by her GP or consultant, cover would be
unconditional. She approached her consultant who returned the
form with the confirmation that she was stable and fit to travel
and that was it. Peace of mind and a wonderful holiday with no
broken legs. Our helpful insurer was C.H. FACILITIES LTD, Tel
0870 7506711 who will try to assist even when a terminal prognosis
has been given.
Roy Cecil
Berkshire
Side effects
From August 2000 until February 2001 I took part in a Phase 2
trial of a new drug. At that stage little was known about the
side effects. The ones I was warned about in advance were diarrhoea,
nausea, vomiting, abdominal pain, loss of appetite and possibly
hair loss - the usual sort of thing. As the course progressed
I developed a number of unexpected problems, some of which took
several months to control. Life could have been easier if I had
been able to manage these problems sooner. As I am sure that these
side effects are not specific to this particular drug I decided
it might be of some help to other people to know about the remedies
I found.
Oral thrush. A couple of weeks after the first chemo I developed
a sore throat. I visited my GP, thinking it was tonsillitis, and
came away with antibiotics. As they had no effect - in fact my
throat just got worse - I went back to my GP (a different one
this time). He said he thought it was oral thrush and prescribed
antibiotic pastilles. The problem cleared in about a week. Subsequent
bouts of chemo produced the same effect and I came to accept that
during each cycle I would have trouble swallowing for about a
week. Then someone recommended tea tree oil - a very strong antiseptic.
I found that gargling with a very weak solution - starting several
days before I expected my throat to start hurting - reduced the
symptoms dramatically.
Watery eyes. At the hospital one day I met a lady who had just
had her 4th infusion of the same drug. Her eyes had started watering
- one of the likely side effects she said. After my 3rd and 4th
infusions, my eyes watered and went red for a few days. By December
2000 they were like a pair of unstoppable taps! Very embarrassing
and very sore. I tried a number of proprietary eye drops but nothing
seemed to help. Earlier during my treatment I had been to Neal
s Yard in Guildford and found the assistants there most helpful.
I decided it was time for a return visit. We had a long discussion
about my symptoms and weighty tomes were consulted. I came away
with a bottle of Euphrasia tincture - a few drops to be diluted
in about 10 ml of water and used as eye drops as often as necessary.
The improvement was immediate. Almost a year after I finished
chemo my eyes still water but nowhere near as much as they did
before I discovered Euphrasia.
Itchy skin. After the fifth chemo, for five or six days my skin
itched - arms, legs, back, front, soles of feet, palms of hands
- everywhere. It stopped as suddenly as it started and I wondered
if it was chemo-related or not. However, after subsequent treatments
the problem became persistent. I tried body lotions, creams to
put in the bath, antihistamines with no effect. It was worse at
night and sometimes I would wake up scratching and, half awake,
think ‘I shouldn't be doing this' . In the morning I would
find raw, bleeding patches on my skin. Another trip to Neal s
Yard and I came away with a tube of Stellaria cream, which I was
assured would ‘take the itch out of anything' . It certainly
controlled the symptoms but didn't cure the problem and I felt
that, with the whole of my body to cover, one small tube wouldn't
last long! Then when I was in Boots one day I browsed through
their leaflet on homeopathic treatments. None of the descriptions
of skin problems seemed exactly like mine but I decided the first
thing to try was Lycopodium. Instant relief! I wondered if the
tablets really were working or if the problem had just finally
gone away, but when I finished a tube of tablets and didn't take
any for a few days the itching returned.
What s next? It looks as if I could need more chemo before too
long. I wonder what delights are in store! Thanks to Lucy at the
Fountain Centre, Guildford, and the ladies at Neal s Yard, Guildford,
for all their advice.
Linda Cecil
Berkshire
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