Well,
what exciting times we've had since the last newsletter: the Golden
Jubilee celebrations, the World Cup, Wimbledon, the London Marathon
and the AGM - which this year was held in Manchester. And what
about the weather? - although as I'm typing the weather is quite
nice, sunny and blustery, but always with that threat of a really
heavy shower. Still, at least the evenings are light, and it never
ceases to amaze me that we Brits can be so optimistic, the moment
the sun does come out, then off come our clothes, however cold
it is.
As usual the AGM was a fantastic way of meeting new faces and
catching up with old friends. The speakers were excellent and
my thanks go to all those who worked so hard to make it happen,
especially Ruth in the office. Most of the sponsorship money from
our Marathon runners has now been paid in; it seems as if the
runners have raised over £10,000 between them. What an amazing
amount! I know they are all feeling back to normal now and not
even contemplating another run in the near future: I wonder why?
If you are seriously interested in running for Ovacome next year,
please contact the office and leave your details.
I am currently doing my final year of an MSc in Counselling and
Psychotherapy, which means that I am carrying out some research
into how ovarian cancer affects women. I intend to start collecting
data in the autumn, so if you are interested in taking part in
this research, please contact me through the office on 020 7600
5141. Thanks go to all of you who have taken the trouble to complete
the membership details once again, it helps us keep the database
current.
Well, I'm off to France next week for my holiday, so if you've
booked a vacation too, really enjoy yourselves, but if you're
staying home I hope the weather improves. Keep well.
Frances
I hope this finds you all enjoying a
few days sunshine! At last it seems that the summer is here.
It was wonderful to meet all of you who attended the Ovacome annual
general meeting in July. Three wonderful speakers - Ian Jacobs,
Professor at St Bartholomew's and the Royal London Hospital, Samantha
Parkin from the Beechwood Cancer Centre and Karen Donnelly from
St Mary's Hospital, Manchester - all gave wonderful presentations,
and were kind enough to take questions afterwards. The committee
regretfully accepted the formal resignation of Karyn Connor, for
health reasons, and sent their love and best wishes, as well as
grateful thanks for all Karyn has contributed to the charity over
the past six years.
Once again we were a little disappointed with a low turnout, approx.
45 members. It was agreed that next year's AGM will be held later
in the year, as we always seem to be clashing with major sporting
events in July. We shall notify you of the precise details, when
we have them, in the newsletter.
Your committee has been busy on your behalf. We have attended
the latest NICE appraisals which are re-evaluating Taxol, and
await their final determination due in September. We were delighted
to accept an invitation from Aventis Pharmaceuticals to be part
of a joint cancer groups reception which will be held at the Labour
Party Conference, in Blackpool. A few of us will attend, and it
would be wonderful to meet a few Ovacome members for an evening
meal etc. (details via the office).
Also shortly to hit the headlines, the results of the ICON 3 study.
We are currently preparing for the ensuing press activity, and
as soon as possible will feature an article in the newsletter
explaining the results of the study. The office staff continue
their fantastic support of Ovacome members, and as we go to print,
are due to recruit two new members of staff. We all look forward
to welcoming them onboard.
Have a beautiful summer, with love
Louise
Debbie and David Howells, whose daughter
Grace was provided by a surrogate mother two years ago, were one
of the couples taking part in the City University study, writes
James Burleigh in the Evening Standard.
Debbie 33, and David 34, a former professional footballer with
Southampton and Tottenham, are a good example of how parents who
receive a child from a surrogate mother provide first class care.
Speaking at her home in Surrey Mrs. Howells said: "When you
have a surrogate child, you tend not to take it for granted so
much. David and I struggled for six years to have a child and
so, when Grace was born, it was something truly special.
"Surrogacy is an amazing gift and I'm certain that I wouldn't
love a child that was genetically mine any more than I do Grace."
The Howells also have an adopted son, and they keep in close contact
with the woman who acted as Grace's surrogate mother.
Six years ago, Mrs. Howells had a hysterectomy after being diagnosed
with ovarian cancer. Grace was born after the Howells contacted
COTS, Childlessness Overcome Through Surrogacy, which introduced
them to the surrogate mother of four at the time.
Mrs Howells admitted that, at first, she found it hard to reconcile
the fact that the baby was not hers. But she said: "One day
she reached out her arms to me, demanding to be picked up. She
knew who I was: her mummy. I wasn't just someone who clothed and
fed her. It was one of the best moments in my life."
I'm sure all our members are thrilled to hear that Debbie and
David have been able to adopt a little boy: their family now seems
to be complete and my heart goes out to them.
Well,
not a whole day, but we packed a lot into a short time!
By Sunday April 7th we were well prepared and everyone had a job.
This year we chose to start at 2 pm as that coincided with the
opening time of the Sunderland Museum and Winter Gardens. As last
year, the Museum and park authorities were immensely helpful and
supportive during our preparations. The Dunston Silver Band had
volunteered to play in the bandstand for us without charge. We
had distributed posters and flyers throughout the North East,
many placed by Kathleen Sunderland. We had mentions on local radio
and in local papers with Katy doing an interview on Radio Cleveland.
The gynaecological department of the Queen Elizabeth Hospital
in Gateshead supported us, as did several local MPs. Answers Health
Shop in Sunderland had an Ovacome window display and we had had
a lovely article in the Sunderland Echo the day before. So, all
we needed was for the weather to be kind to us. Incredibly, it
was. The sun shone from a cloudless blue sky, and in the sun it
was warm. Mowbray Park, a newly restored Victorian park behind
the Museum looked beautiful. Even the trees' bare branches displayed
attractively above the spring bulbs and their shadows reflected
in the lake.
Our mile-long course was designed and laid out by Katy and Derek
- it's not just a simple walk as this park has a hill at the far
end, from where you can see the sea on a clear day, and also a
quarry area, where primroses bloom. There was a slight problem
with missing markers initially - two Boxer dogs were found to
be the vandals responsible! As last year's chalk marks had taken
some time to wear off and in view of the Queen's impending Jubilee
visit, it had been a condition of our booking that we mark the
course differently this year.
Wendy and Joan arrived early with a posse of friends and neighbours,
all sponsored and raising money for us. Heather, our money lady,
arrived with Jack and Eric as bodyguards, to deal with the registrations
and Kathleen joined her. They made a great team dealing efficiently
with the increase in business as start time approached. A slight
hiccup occurred as the band started to arrive and their 25 chairs
in the bandstand did not. Thank goodness for mobile phones as
I was able to ring the staff of the Museum and they lent us chairs,
holding me personally responsible for their safe return! I hadn't
thought to look to see whether the Ovacome event insurance covered
such eventualities! As 2 pm neared, it was a relief to see more
people arriving. We were based on the new North Terrace just by
the outdoor seating area for the café and the entrance
to Winter Gardens. Ovacome members and their friends took the
opportunity to visit both during the afternoon.
Joan was 'balloon monitress' and decorated the bandstand. Ann
had collected the start/finish banners lent by @Nova International
and Pat and Bill manned the finish. Claire from Lazi Leisure not
only brought her team and a large cheque, but also several cases
of boiled water donated by Abbey Well. The St John's Ambulance
cadets kindly helped us carry those.
Derek started his vigorous warm-up, which was great fun for us
all. One or two members did say they found the warm-up more tiring
than the actual walk! Then they were off! I say this advisedly,
as I was kept busy walking round the lower part of the course
and did not reach the further parts at all. However, my family
completed the full course.
The band struck up in the bandstand, playing an excellent selection
of music, and there were no hitches. Ovacome members, families
and friends raised over £1,500 on the walk. The run/jog
bit wore off early and for most participants it became a pleasant
stroll. We'd all like to congratulate Margaret, who walked the
whole course again this year, despite being in the middle of her
chemotherapy, and to thank Vince for so bravely taking part, with
many of Sue's friends, in very difficult circumstances for them
all. By 4 pm we were all tidied up and ready to go home. The park
warden said "see you next year" so we cannot have been
too much of a nuisance to them!
Will we do it again in 2003? Well, we have a solid base of information
and support to work from and have even, by request, opened a mailing
list. We would be very lucky to have a repeat of such perfect
conditions, but we do still have the dream of 500 people in the
park walking/running/jogging for Ovacome and raising awareness
of ovarian cancer, so it is most likely that we will.
Margaret Borthwick
Adrian
Dickinson, Secretary
My involvement with Ovacome began in supporting my wife Sarah's
vision for a nationwide support group for ovarian cancer - well,
actually making the tea and handing round biscuits at the very
first Ovacome meeting! Since that time I have raised money for
Ovacome through bike rides, and have recently become Secretary
to the charity. Outside of Ovacome and my work I look after my
nine-year-old daughter Michelle, and in my spare time I enjoy
mountain biking and sailing.
Jan Walsh, Adopt a Hospital
I joined the committee at the AGM in July 2001. I am a Health
Visitor (currently not practising). I have two daughters aged
28 and 23, and a dog named Bonzo who is my constant companion.
I was diagnosed with Stage 1V at King's College Hospital, London,
where I found really useful information about Ovacome. I wanted
to do something about ovarian cancer. During the treatment I completely
lost my hair, I'd thought waking up in the morning and finding
clumps of hair all over the pillow would really freak me out but
it didn't. My hair has now grown back and I'm thrilled to be able
to tell you that I've just made an appointment for my first haircut!
Andrea Pithers, Raising
Awareness Co-ordinator
I am a GP (at present having a break as I've been living abroad).
I've always had an interest in women's medicine and one day I
picked up a copy of the General Practitioners Journal, and inside
was an article about Ovacome. I contacted the office to see if
I could offer my services, and here I am! I am currently trying
to encourage the powers that be to incorporate ovarian cancer
into the training programme of all GPs.
I am married with three children; I'm absolutely hopeless at all
sports, apart from, to my amazement, water-skiing, which I love.
Nina Irvine, Treasurer
I'm a married 38-year-old IT Manager also taking a break from
my job for a few months. I was diagnosed with borderline ovarian
cancer last year and wanted to do something worthwhile to help
others with the disease. I called the office to offer my help
as a volunteer; initially I worked on Thursday afternoons, making
up membership packs, and was a general dogsbody! But I felt part
of Ovacome which I had found extremely helpful and supportive
during my time of need! Since working as a volunteer, however,
I have been persuaded and cajoled into becoming treasurer, a huge
task but one which I am really looking forward to, albeit with
some trepidation.
Diana Williams , Public Relations
Being a James Bond fan was the first step towards Ovacome for
me! When mum (Rosemarie, also on the committee) was diagnosed
in Autumn 1997, all I knew about ovarian cancer was that Pierce
Brosnan's first wife Cassie Harris had died from it. Luckily I
found Ovacome via the website, and we were really pleased to receive
the newsletters, especially in the early days. After mum got better,
I wanted to do my bit to ensure that Ovacome is there to support
all those who want or need our help.
My favourite Ovacome activity has definitely been the AGM, I've
been to three now and each one has been excellent - we've had
great speakers, and honest active debates. The best bit though
is meeting everyone, we have some truly remarkable members who
are a real inspiration. In my day job I'm a communications manager,
and it's these skills along with my enthusiasm, that I hope I
bring to the committee.
Rosemarie Williams,
Mother of Diana (above)
The Welsh are renowned as good talkers, which is probably why
I found myself on the committee - however, we Welsh females remain
extremely silent on the subject of ovarian cancer. I am 55 years
of age and was diagnosed with Stage IV almost five years ago.
The road back to health has been a real challenge, and that I
am where I am is a tribute to my family, close friends, consultants
at Velindre and UHW and the support of TENOVUS nurses and counsellors.
Now retired I have a totally different life, I miss the company
of work, but not the stress! I have holidays in the USA when I
can and have discovered cross-stitch. Part of my work on the committee
has been in dealing with health and safety issues, raising awareness
and supporting others with ovarian cancer.
Helen Bayley, Merchandise
I became a member of Ovacome soon after I was diagnosed as Stage
3 in March 1998. Like many newly diagnosed members of the charity
I wanted everything made perfect for all women immediately. Why
so much ignorance, why wasn't the CA125 a reliable test for all
women? Why couldn't all GPs recognise the whispering symptoms?
Over the last three years I have learnt a lot about the disease
and the system. I know that together we can make a difference,
especially now that the NHS is emphasising the importance of US
- the patients/users. I attend conferences, exhibitions, order
new merchandise and attend gynae oncology meetings, talk with
ladies on Fone Friends in the Midlands and help others to set
up support groups in area 11. I am always happy to talk to the
media and will continue to spend each day educating women.
Will you sponsor my Three Peaks
Challenge?
My name is Christine. I am 43, married with two sons and until
now quite a sane person - that was until someone asked if I would
like to join another 19 people on the Three Peaks Challenge!!!
For those of you who have never heard of this, I will explain.
The challenge is to walk or climb the three highest peaks of Scotland,
England and Wales in 24 hours. You start at Ben Nevis in Scotland,
then travel to Scafell in the Lake District and finish at Snowdon
in Wales. Completing it in 24 hours is the tricky bit!
My hope is to raise money for Ovacome, a charity I have only just
become aware of. My mother was a wonderful kind and generous lady
who lived for her family but was sadly taken from us in 1993 with
ovarian cancer at the age of 62.
She was a very fit person for her age, she loved to walk for miles
with her dog and she cycled everywhere. When we found out she
had ovarian cancer it was such a shock, as she seemed so well.
I know my mother would have loved to have the chance to do this
challenge herself, so whilst I am walking up these mountains and
am nursing sore feet and blisters, it is thoughts of mum which
will keep me going, and the fact that every step will be helping
other families cope with this terrible disease.
Christine Johnson
Christine's neighbour set up a charity ten years ago called Home
of Hope Romania, an orphanage which is home for 14 children all
suffering with AIDS. One of the charity's runners had to drop
out and the place was offered to Christine. We are most grateful
for this generous offer, and as Christine is raising money for
Ovacome I hope many of you will feel able to sponsor her in this
tremendous challenge.
Hundreds of women in the north-east are
facing unnecessary trauma because of a lack of support for them
after undergoing surgery for ovarian cancer, a leading charity
said yesterday.
Research carried out by Ovacome, a nationwide support group for
women affected by ovarian cancer, said that over half of all women
with the disease are not offered any counselling to help them
cope.
The charity said that the lack of emotional support available
had serious repercussions, with one in five women quitting their
jobs as a result of their trauma and nearly one in fifteen experiencing
long-term mental health problems.
Over two-thirds of the women affected said they were worried about
discussing their concerns with family members for fear of becoming
a burden.
71% said it was difficult to talk to their friends because they
simply did not know what to say to them.
A spokeswoman for Ovacome said: "This survey dramatically
highlights the need for support when a woman is diagnosed with
ovarian cancer. At the moment the service is patchy with some
patients receiving fantastic support and others receiving virtually
none. Cancer is not just a physical disease - it causes a great
deal of emotional trauma too."
Being diagnosed with ovarian cancer
within childbearing years can have a devastating effect on a woman's
choices and aspirations with regards to fertility. In some cases
loss of fertility is a consequence of the cancer and its treatment,
a situation, which many women find to be a double blow.
This article has been written to help you understand the choices
that may be available to you and the responsibilities of the multi-professional
team who may be involved in your care. Although it may not answer
all of your questions, I hope it provides some useful information
on available treatment options whilst understanding some of your
feelings which result from a potential or actual loss of fertility.
Catherine Spencer (Clinical Nurse Specialist in Gynaecological
Oncology at St. Bartholomew's Hospital, London)
A multi-professional team at the Cancer Centre has the specialist
expertise to ensure that you receive the best care. You should
receive effective, adequate information and support to enable
you to explore the options and the feelings you may have as a
result of your diagnosis and treatment. There will be further
articles discussing your choices in more detail, outlining the
practicalities and highlighting real life experiences.
Firstly, it is important that the medical team gains an understanding
of your hopes and concerns regarding having children. For women
of childbearing years it would be standard practice to raise this
issue. You should be given the opportunity to discuss fertility-sparing
options with your surgeon, on the basis of early investigations
or suspicion of disease. This is mostly a possibility in some
early stages of cancer. In all cases this needs to be weighed
up against treating cancer to the best of current ability.
For women with later stage disease of the ovary, it may be useful
to explore treatment options with a fertility specialist whilst
the plans for your surgery are in progress. Your cancer centre
will be able to refer you.
Some of our patients say that they need to have explored every
possible avenue before proceeding with any cancer treatment that
has an irreversible effect on their fertility. In some situations,
the answers may be difficult to come to terms with.
The effects of cancer and its treatment (usually surgery and chemotherapy)
on fertility and sexual function may differ, and therefore you
should be given the opportunity to make your views and personal
priorities clear to the team, who will then take these into account
when planning your care.
You should be offered specific information on your cancer and
your individual treatment and the impact of these, on your fertility
to the best of current knowledge. Information should be both verbal
and written and be offered alongside support and counselling with
regards to the implications of these, for you and your future
hopes.
The following information outlines possible surgery for ovarian
cancer, its impact on fertility and the choices that could be
discussed. One of these is living childless and being supported
with your feelings of loss. Fertility specialists will ask your
referring doctor about the safety and possible effects of any
drugs. In all cases the welfare of the unborn child, particularly
with women with a history of cancer is taken into consideration
and will be discussed with you.
SURGERY AND ITS IMPACT ON FERTILITY
Unilateral oopherectomy - the removal of one ovary, leaving the
other ovary and uterus. In this case fertility should not be compromised
unless there is a previous history of infertility and you should
be able to conceive naturally.
If you are at all concerned please discuss this with your medical
team as in some circumstances, e.g. if you are over the age of
37, it may be worth speaking to a fertility team earlier. Any
couple who have been trying for a year to become pregnant could
be referred for specialist support. Fertility advice may be required
for reasons other than the cancer or its treatment.
Bilateral oopherectomy - removal of both ovaries but retaining
the uterus. It is not possible or safe to stimulate the ovaries
prior to surgery to harvest eggs when there is suspected cancer
in both ovaries. In this difficult situation, the option that
may be open to you is of an egg being obtained from an anonymous
or known donor (egg donation), fertilised with your partners'
sperm and the embryo implanted into your womb. You would need
to take hormone replacement therapy to stimulate the lining of
the womb to receive the embryo.
Your health will be taken into consideration as well as the length
of time since diagnosis and completion of treatment.
Legal guidance from the Human Fertilisation and Embryology Authority
states that the donor can be up to the age of 35. There is no
stipulated age for you in receiving the embryo, but most fertility
units have an upper age limit.
Total abdominal hysterectomy and bilateral oopherectomy. This
involves removal of the womb, tubes and ovaries, which will result
in immediate loss of fertility and hormone function. This is done
to remove as much of the bulk of the cancer as possible. This
is often extremely difficult and women often describe their feelings
of sadness and loss after such an operation.
Support from family, friends and the oncology team is essential
in understanding these feelings and allowing you time to absorb
what has happened to you. For some, formal counselling has helped.
At a time in the future it may be that you wish to consider other
options for having a family including surrogacy, fostering and
adoption.
Further information on these points can be obtained from:
Childlessness Overcome Through Surrogacy (COTS) www.surrogacy.org.uk
Secretary: Gena Dodd, Loandhu Cottage, Gruids, Lairg, Sutherland
IV27 4E7
Local social services will have information regarding fostering
and adoption agencies. In all cases your wellbeing and health
will be considered alongside that of your partner and the needs
of the child. An initial conversation about the impact of cancer
treatment on your fertility with your oncology team could lead
to onward referral to a fertility specialist for further information
in exploring choices. You should be given sufficient time to reflect
and the opportunity to discuss treatment options before making
an 'informed' decision. The team is ultimately responsible in
helping you understand your choices by providing you with adequate
information, support and advice throughout.
Denise Wragg appreciates the good things
in her life - a happy home with her husband Howard and their three
children. But two years ago she came frighteningly close to losing
all that she valued. Denise was already aware of ovarian cancer,
as her aunt died of the disease and her mother was diagnosed with
it.
On medical advice in 1966 Denise, then 36, and her two female
cousins were offered annual screening tests, as having two close
relatives affected by ovarian cancer increased their personal
risk of developing the disease. But at that stage she was not
unduly worried. "I thought it wouldn't happen to me,"
said Denise, from Heath, near Chesterfield. "I'd had three
children with no gynaecological problems. I felt healthy, I was
normal.
"I was asked to go for screening every September and it was
always fine. Then I moved home, had a change of job, I was so
busy I thought I'd go another time." In the November she
started to feel ill. "I was very bloated and had painful
periods, I was in a lot of pain. I had a lot of antibiotics from
my GP but the infections didn't go away.
"My GP was very good and referred me again for the screening
I had missed, and I was referred to the Consultant at the Chesterfield
Royal Hospital. He said there was some enlargement of my ovaries,
he thought it could be endometriosis and also perhaps a bladder
problem. He asked me to come back for a scan in March."
But as the weeks went by her fears grew. "I was convinced
I had cancer, I thought this is sinister, I was so bloated I looked
pregnant. Then I got a call from the hospital to see them about
a bladder repair operation. The doctor told me 'I can see you're
upset'; it had got to me and I was very worried that I might have
ovarian cancer. I remember that he said: 'Denise, you haven't
got ovarian cancer, if we thought you had, we'd have you in tomorrow'."
But she was still not reassured and decided to be seen privately
at the hospital, so that she would not have to wait any longer
for the hysterectomy.
The operation went ahead in June 2000. When the surgeon opened
her up, he found a tumour was pressing down on her bladder, each
of her ovaries had blown up to the size of a clenched fist. Afterwards
Denise had six sessions of chemotherapy, to make sure that all
the cancer cells were wiped out.
By telling her story, she does not want to blame doctors, or to
frighten patients, as she recognises that the symptoms are easily
missed, because they are similar to other conditions, but she
does want to make others more aware of the condition.
And having the condition changed Denise's outlook on life, so
that she gave up her job as a pharmaceutical representative to
become a housewife.
"I realise I'm not as much in control of my life as I thought
I was. My attitude has changed, as well as my priorities, with
my husband, children and the garden now my priorities," she
added.
"I'm so very lucky, if we had left it another month the prognosis
wouldn't have been so good."
Denise had been helped to cope by the charity Ovacome, which offers
support and advice to sufferers.
This account of Denise's story was published in the Doncaster
Star, and our thanks go to Denise for being prepared to speak
to the press.
Stephanie and I were within a week of our 49th wedding anniversary
when our alert GP warned us that he had palpated a pelvic mass.
The presenting urinary symptoms were thought to be due to a diuretic
medication prescribed for mild hypertension. Stephanie had said
nothing about the small discharge around her navel. Now all was
revealed.
Ultrasound and CT scanning disclosed the ovarian tumour and secondaries,
including one which had made a track (fistula) through the abdominal
wall near the umbilicus. A
bowel surgeon visited Stephanie while she was waiting to go to
the operating theatre and warned that she might need a colostomy,
he was present with the gynaecologist and worked with him during
the four-hour operation. I spoke to the surgeons in the changing
room after the operation; a colostomy fortunately was avoided.
It was thought that the tumour was a poorly differentiated adenocarcinoma
of the right ovary, which could have been present for about five
years, as it's known that ovarian cancer manifests few, if any,
symptoms in the early stages.
Modern surgery and postoperative care had Stephanie leaving hospital
within eight days. The oncologist had visited Stephanie whilst
she was recovering in hospital. A man of few words, he simply
said that he admired her. Our first visit to him was ten days
later; he headed an expert team of nurses and pharmacologists.
The lead nurse showed Stephanie a refrigerated cap, an option
which, it was suggested, might help to avert total scalp hair
loss if worn and maintained at -5oC, during the intravenous Taxol
infusion. Stephanie wore it throughout the monthly hospital-overnight
procedures and conserved just under half her scalp hair, but lost
all her eyebrows and eyelashes soon after the first of the six
sessions.
The side-effects to be expected were well explained, notably the
peripheral neuritis experienced as numbness of fingertips and
toes. The toes were to prove the most difficult to manage since
lack of feeling made walking difficult and trip-ups a risk.
I had asked about nausea and vomiting and was told that it would
not be a problem, I soon found out how it was avoided. A massive
dose of dexamethasone, given by mouth 12 and six hours before
the infusions with intravenous granisetron, a powerful anti-emetic
(anti-sickness) drug.
Immediately after chemotherapy Stephanie was euphoric: she cooked
all the meals for us for 48 hours, then took to her bed for four
days.
I gave her an injection of filgrastim every day for ten days to
keep her white cell count (defence against infection) very high.
These four-day episodes were 'flu-like, generalised aching but
no raised temperature, poor appetite with no nausea but marked
gut pain and severe constipation, which might have been a side
effect of granisetron. After the first infusion with taxol-carboplatin
we developed a domestic regimen for managing side effects. Amitriptyline
was prescribed for pain and was highly successful. Gut spasm was
managed with mebeverate, granisetron was on stand-by and so too
was ciprofloxacine in case of infection. The fourth session of
chemotherapy was followed by a scalding urinary infection, not
recognised as such at first, but treated with trimethoprim after
a urine sample had been sent to the laboratory.
Just prior to the infusions Stephanie took laxatives: lactulose
which softens the bowel contents and if necessary sennakot, which
seemed to help overcome the problems with constipation. The aftermath
of the final infusion was a rectal bleed which was disturbing
and frightening, but of short duration. There was too the only
bout of sickness Stephanie had had throughout her treatment. Her
eyebrows and lashes have grown again but she still has the numbness
in her feet and fingers.
Stephanie's hair is not showing any sign of growing yet (not enough
anyway to warrant a trip to the hairdresser), her joints are still
painful, but she did suffer with this condition prior to being
diagnosed, and apparently carboplatin would have exacerbated this.
Marked weight loss has changed to marked weight gain!
This has been Stepahnie's experience and management of Stage IV
ovarian cancer: she is 75 years old.
The experience of chemotherapy is different for each person and
it would be inappropriate to generalise, save to say that it requires
insight on the part of the patient and carer. Constant support
is required and is available from a number of sources, Ovacome
being one of them. My advice is to get answers to all your questions
and concerns.
It is important to look forward to the anticipated outcome, particularly
when the side-effects peak after each infusion. Enter into chemotherapy
with courage and a will to see it through. Bear in mind that it
is all that is presently available and previous generations didn't
have anything to compare with the management of malignancy which
is available today.
We are much indebted to the many professions involved in the care
of cancer cases; we warmly thank them for their kindness and help.
Luckily our GP set in motion all that has been described; we don't
like to think about what might have happened if he'd failed to
diagnose the disease.
Finally I salute my wife for this further evidence of her courage
throughout our marriage and for her determination, aided by modern
medicine, to seek to alleviate a malignant condition and enhance
her life expectancy.
Peter Walsh
Chingford, London
Well,
I made it, all 26.2 miles, but boy was it hard! All those wanting
to do it, think long and hard about it first, though it is totally
worth it! I ran the first 13 miles and was in my full chef's attire,
which the crowds loved. The second half of the race, I walked
and ran in little spurts, because by then I was in too much pain;
sore legs, blistered feet and very hot in my chef's gear. I've
got sponsorship for up to £1500 for Ovacome, so a big thanks
is owed to all those who sponsored me, including yourselves. For
those not lucky enough to have seen me (!) I hope the picture
with my medal is proof that I made it. As for whether I do it
again, we'll see; but if I do, then I'll definitely do it in fancy
dress and run with somebody . . . maybe I can persuade dad to
come out of marathon retirement! Thanks again for the sponsorship.
Hope to see you sometime. Tim Payne
Tim is Ruth's son and I know you'll want
to share with me in thanking him and all our other marathon runners
who have raised to date over £10,000 for Ovacome.
Judith
Price, Another of our marathon
finishers, looking remarkably relaxed.
The Flora Light Challenge
A 5-km (3-mile) Run, Walk or Stagger for Women
Sunday 1st September, Hyde Park London
If you've entered, please leave your name and telephone number
at the office: let's meet up and make an Ovacome team.
Four of us from Ovacome are hoping to hobble around the course:
myself, my daughters Karen and Beccy, and Nina (the treasurer).
And if you haven't entered, why not come and cheer us on? We'll
need all the support we can get!
The Edinburgh Marathon 2002
8th June 2003 (to be confirmed)
Edinburgh is one of the most picturesque cities in the world and
an excellent stage for this annual event. Ovacome has applied
for some charity-assured places, so if you are interested please
contact the office and leave your details
This week was particularly special to one of the men in my
life - Arsenal won the double! I was ecstatic for him, as the
only thing to give him more grief than Arsenal over the last two
seasons has been my diagnosis with ovarian cancer.
I was 24 and you don't expect to hear from your gynaecologist
that the cause of your miscarriage is cancer. My poor dad had
only just come to terms with impending grandadhood when I phoned
to tell him not only that I'd had a miscarriage but that they
suspected I had cancer too, but not to tell my mum just yet. I
must point out that my mum is a cancer nurse at the Wessex Cancer
Centre in Southampton and she would have marched me back home
whether I wanted it or not.
Apart from dedicating this to my dad John, what I want to talk
about is MEN! Think of me if you will as the ovarian cancer Bridget
Jones type. I am now 26 and single . . . if you didn't get that
I said SINGLE! You see, my partner left me as both the baby and
cancer thing was too much for him to bear - well, that was how
he put it to me by e-mail on Valentine's Day. Boy, have I had
grief ever since!
First of all, I like men - no actually I love men and everything
about them. I love football, lager and Kylie. But how do you tell
a man, especially one between 25 and 30 years and who you fancy
like mad, that you have cancer and that your remaining ovary (and
I am fed up explaining what they are, and that, like lungs, women
have two of them) has a shelf life?
My shelf life is six months, give or take a few months or years
if I get my way, before they relieve me of my last ovary and intravenously
drip me with HRT. This is an ongoing debate with my consultant
and usually I say "over my dead body". I hate to sound
flippant about a disease which has left me feeling as if I had
been run over by a steamroller, both emotionally and physically,
but I like my ovary, probably too much. Actually, I am damned
right possessive of it, in a way similar to how I treat vodka,
Bacardi and wine. I've made no secret of my desire to have a child
with my remaining ovary as my perfect conception partner. But
how does that translate to the opposite sex? Well, I had male
friends wishing to donate their sperm (with or without their wives'
consent), I had to tell one gently, though I love him dearly …
no, no, no!
I have had to contend with the permanent skid mark which my ex
made on my carpet when he bolted, to where I don't know, maybe
Outer Mongolia, anywhere bar my house as I have never seen him
since.
My mum, the south coast's Yoda (exceedingly short, green and full
of apparent wisdom) thinks I should leave it until I know they
are serious about me. At least ten minutes is an agreed target!
I agree, but when is the right time? Is that after my wedding
vows or before, in my case, the drunken fumble after one too many
vodkas? My mum says it's my desire for a child that's putting
men off, and I thought it was my good job, own house, qualifications
or stubborn independence!
In my opinion the dreaded C word has a lot to do with it, no not
commitment but cancer! Let's see, cancer is not contagious, not
sexually transmitted or, in my case, something that interrupts
my normal day-to-day life. I have come to realise that my cancer
is the reason why I love my life, treat each day as a miracle
and that to have a child would be the icing on the proverbial
cake. So why can't men see that I am a complete package inclusive
of my cancer and that they are not dating the cancer but a reasonably
sober, sensible 26-year-old who would like a child and a man in
her life?
Until this happens I have given up, put on my chastity belt and
thrown away the key (I lie, my mum has it and will reissue it
only when Mr. Right comes along). If it's meant to be, it will
happen and Mr. Right will accept me as a complete package. If
not I will fight for my right . . . ovary, that is, and get a
return bus ticket to the nearest sperm bank!
'Desperately Seeking'
Emma
Outside the window huge great clouds toil by, slow, solemn
ships.
I stare at them, my eyes blind as oceans.
Inside the air is waiting, waiting for someone to say something;
No-one speaks. My tongue is nailed down.
Words are more than helpless, words have fled.
I feel myself vanishing upwards, dissolving into cloud,
With the room turning, turning under me,
Tick, like a clock, though here all clocks have stopped.
And the air goes on waiting, stupidly,
The stunned air does not know what else to do;
No-one can help it; not one of us knows what to do.
And I am spinning, slowly spinning, shattering into fragments
And there is no-one who can know how to reassemble me,
For there is no-one who can speak for me.
We are all robbed, robbed of the power of speech:
Someone has burgled our lives.
Gill McEvoy
It's amazing what the loss of a friend can encourage one to
do! It's not as if I'm a newcomer to arranging the odd concert
for charity, but to book Huddersfield Town Hall - 'with all those
seats!', as Sheila's sister declared when I expounded my idea
- was perhaps looking a little ambitious to say the least!
But where else should one consider, in the area of Huddersfield,
when you have the glorious voices of Honley Male Voice Choir coupled
with the melodious blend of brass instruments in the Skelmanthorpe
Band, TV celebrities Granville Danny Clarke and Jon Hammond adding
artistic colour and humour, all rounded off with a song or two
by yours truly, and a joyful British flag-waving finale?
Sheila Wilks, dedicated Fone Friend, fought a battle with ovarian
cancer for five years, and although her body could not overcome
this silent disease, her spirit certainly did. Medical care was
superb, but the support she found with Ovacome was as equal in
importance in her fight to survive the cancer as any physical
treatments she needed and endured.
Performers also need support, and in my case no more so than at
present. The task is achievable, the reason would be no more sincere,
this concert is saying thank you to a supportive friend in the
only way I know how.
Your support will not only make the evening of Monday 2nd September
the success it deserves, it will also assist 'Ovacome' to continue
folding its arms around the victims of ovarian cancer, and their
family and friends, and campaigning for more research, funding,
awareness and regular screening for women.
Please join me, and wave the flag 'For all those Remembering a
Friend'.
For All Those Remembering a Friend
A concert in memory of Sheila Wilks
Huddersfield Town Hall
Monday 2nd September
Tickets £6 to £12
Kirklees Booking Office and Tourist Information Centre
01484 223200
Ideal for short breaks
My name is Alan Yeomans and my wife Wendy died on May 16th last
year with ovarian cancer.
In my area of Skegness there is very little in the way of support,
for example there are no support groups to help people get over
the loss of partners. I have been to my GP and all he could do
was prescribe me some antidepressants which helped only in the
very short term. Eventually the realisation of great emptiness
and loneliness creeps in from knowing that your partner has gone.
MY IDEA
I live in a two-bedroomed council flat on the outskirts of Skegness
and I wish to offer free break/holiday to anyone who needs one.
There are two single beds in my spare room, all you need is to
buy your food and arrange your transport to Skegness. The room
will be available all year round. Maybe you are feeling empty
and lonely due to loss of a partner or maybe you just need some
good clean sea air.
SKEGNESS AREA
Skegness is situated on the east coast of Lincolnshire and has
many good entertainment attractions including Fantasy Island,
Butlins and the Embassy Theatre where many celebrity artists such
as Val Doonican and David Essex have appeared. There is also an
indoor swimming pool and gymnasium.
There are a good number of places to go if you like to eat out
such as the Look Out and the Beach Comber; meals are at reasonable
prices and, of course, we have the best fish and chips for miles!
Fantasy Island is famous for its markets and there are plenty
bargains to be had.
And in the off season everything doesn't all shut down: restaurants
stay open and even the theatre still goes on with pantomimes and
artists.
There are miles of good sandy beaches and a promenade, which stretches
for at least three miles from Skegness up past Butlins to Fantasy
Island.
If you like to dance the night away or simply go for a quiet drink
there are some excellent venues such as the Dunes Pub where entertainment
goes on all year round.
FACILITIES IN THE AREA
My home is close to the doctors and the local cottage hospital
is only five minutes away, so if you need any medical cover it
is close by.
BOOKINGS AND CONTACT
If you are interested please do contact me at 98 Lancaster Avenue,
Skegness, Lincolnshire PE25 2PL
Telephone 01754 898564
E-Mail alanyeomans@btinternet.com
As we are all aware fund raising is a major part of enabling
Ovacome to continue to help with our cause. Our cards are a huge
success. Please help to make them as successful this year by ordering
your supply now. All cards come in packs of 10 and princes include
postage and packing. (To the UK only)
Use
this link to print our order form and post with your cheque to:
Ovacome, The Basement, East Wing, St Bartholemew's Hospital, London.
EC1A 7BE
or you can telephone us at 020 7600 5141
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Meeting the press
I have just received the newsletter which mentioned the BBC broadcast
about screening for ovarian cancer. I was interviewed and appeared
at length in that broadcast. I have also recently been interviewed
for Sky News on latest drug trials, and have done phone interviews
for the Mirror and the Western Gazette, a paper based in Bristol.
I also contributed to a feature for the 'discovery health' website.
I'd like to tell others like myself that there is nothing to be
afraid of. All the interviewers were very sympathetic and the
interviews are conducted in a very relaxed fashion - usually just
the interviewer and a cameraman. I am just a normal person, a
teacher who was diagnosed in 2000 and had a recurrence in 2001.
It is a chance to get our situation noticed and for other ordinary
people to be aware of the issues involved. If you get the chance
don't be afraid but speak out and make people notice!
Lesley Hogan
The Iron Lady
My sister Gill Turner had ovarian cancer and was lucky to pull
through. Five years went by and the cancer came back in the bowel
after we thought all was well. Gill is loved by everyone and lives
life to the full. She never complains about the pains or the operations
she has gone through. Because of her strength I have nicknamed
her The Iron Lady.
The nurses and doctors at the hospital have never seen someone
with such a fighting will to live. It has been over 10 years and
the cancer has taken over again but my sister still fights on.
I think if Gill were the Prime Minister this country would be
a better place to live. Myself, I am selfish; I do not know what
I would do without my Iron Lady.
Jackie Prigmore
Essex
Every little helps
For Ovacome Day I decided that I was jolly well going to do something
to raise funds. With the help of two friends I had stalls at two
venues in Brampton on market day April 10th (each one from 9.30-11.30
am), pictured below. Also I had a window display for Ovacome for
two weeks in the centre of Brampton. I arranged for the office
to send me Ovacome merchandise such as notelets, keyrings and
mugs and tea towels and away I went. I couldn't believe that we
raised £60. My motto being every little helps!
Anna Clare
Cumbria
"Getting the boot"
For about three years, in the early 1990s I seemed unwell, everything
seemed too much trouble and I longed for the weekends (so as not
to have to rush off to work). My GP thought I had a fibroid and
decided to leave well alone. I visited the lavatory every half
an hour or so and asked for sleeping pills to enable me to have
a better night. Hopefully, I would then have more energy during
the day. Finally, scans, blood tests and other examinations found
ovarian cancer - advanced stage 3. I had carboplatin at three-weekly
intervals and quarterly check-ups. These then became half yearly,
and annually. I was initially told I would be checked over for
the rest of my life. I am now 60 and at my last check up to my
astonishment my consultant (in his words) told me he was "giving
me the boot". My CA125 level remains at a low level and he
was satisfied to make this decision. I felt to begin with that
my safety net had been taken away, but my file will not be destroyed
and it is comforting to know I can return should I have any recurrence
or worries. I hope this gives encouragement to other women.
Valerie Gross
London
In response to Gwynneth Baker
When I read Gwynneth's story it made me realise that not all of
us who have had ovarian cancer are prepared to continue with chemotherapy
when they have a recurrence. Having had two years (1990-92) of
chemotherapy and an eight-year clear period I was surprised to
find that it had raised its ugly head again. I was prepared to
go back to conventional chemotherapy (which I did) but with an
open mind to anything else on the market.
Thanks to a loving husband and a supportive family who understand
the internet (which I don't) I was able to coax them into surfing
the web for me for anything and everything that could help in
the treatment of cancer.
We came across a new South African supplement made from a herb
called Sutherlandia. It is new to the UK and has been successfully
used in the treatment of cancer. I myself came off chemotherapy
after 18 months (not with as low a CA125 as I would have liked
but I was stable and feeling well). After I heard about Sutherlandia
I asked my oncologist if he would mind if I took the pills: he
told me to go ahead.
For the last few months I have taken one tablet a day (not two
as recommended) and have found a vast difference in my energy
levels and general well being with an added bonus of my tumours
decreasing a little in size. I have to admit that I would go back
onto conventional chemotherapy if I had to, but who knows what
tomorrow might bring?
I leave you with this final thought ladies: we are really lucky
because there is treatment for us which is improving daily. For
some, e.g. those with spinal injuries, Parkinson's disease, senile
dementia, to name a few, no cure is as yet in the pipeline.
For anyone who is interested Sutherlandia can be obtained from
REVITAL, 78 High Street, Ruislip, Middlesex HA4 7AA. Freephone
0800 252875. It costs £18.99 for
60 tablets.
Sutherlandia can also be obtained from Biogenesis Laboratories
in the USA. Email info@biogenesis.co.za or visit www.biogenesis.co.za
Hair removal
I read with interest the letter in the Spring issue regarding
hair removal. I was surprised to learn that the two ladies concerned
do not take any tablets or HRT. Has either of them consulted their
GP? I say this because of someone I know in their mid 40s who
developed a long beard under her chin. Because it was such a sensitive
subject people she knew just stared but said nothing. It took
her years to get 'treatment' on the NHS. Sometimes, she resorted
to burning it off, which I think was most unwise! Otherwise it
could have been shaved off. Sometimes she did this and started
new growth.
Surely the problem in all women with hirsuitism is hormonal, i.e.
an imbalance of oestrogen, progesterone and testosterone. The
correct hormone balance could be determined by a blood test. The
lady above had to beg for private treatment through a charity.
She argued that she could not look for work effectively and attend
interviews wearing a beard. In the short term the use of Immac
hair removing cream or electrolysis might be useful.
Mary O'Dwyer
London
I enclose £250, which was raised from kind donations
made by colleagues, family and friends who sponsored me after
my recent 'night in the nick'! I also raised £250 for the
Crocus Trust and £250 for the Merseyside Police High Sherrifs
Charitable Trust. Who says crime doesn't pay?
Maxine Martin
Thank you so much, Maxine, we
were all really amused and amazed. Let's hope you'll keep on the
'straight and narrow' from now on!
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