Experiences

Did you see this

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.

Denise went private and survived ovarian cancer

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's story

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

Dear Diary

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

Diagnosis

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