Experiences

Jane's tortuous path to diagnosis

As a nurse I do have some medical knowledge but as far as ovarian cancer was concerned I was totally ignorant of its signs and symptoms and of the tests available for its diagnosis.Last summer I started getting pain in my lower right abdomen. I can t remember when exactly it started but it had gone on for a number of weeks and it began to worry me as I was having to take painkillers on a regular basis (something I rarely do) to alleviate the symptoms and they were having little effect. I was also experiencing a ‘dragging sensation in my lower abdomen as well as the desire to pass urine frequently, and even when I had been, the desire to go stayed with me. The symptoms reminded me of the sort of period problems I used to get.

I had had a fairly early natural menopause (in my late thirties, early forties) so had been on HRT since I was 43 and had been having no problems until now. So I made an appointment to see my GP at his surgery He prescribed trimethoprim for urinary symptoms. He also made an appointment to have an ultrasound scan.

The scan was booked for 5th September. The sonographer was very pleasant and explained everything she saw. It appeared that there was a 2.5 cm cyst on the right ovary and there also seemed to be fibroids in the uterus - she could not see the left ovary even though she had a good look around for it! She also said there was some fluid in the pouch of Douglas which, she said, should not be there. The report was duly sent to my GP and on 21st September I returned to see him when he informed me that I would be referred to a consultant gynaecologist in Stockport.

I received an out-patient appointment for 11th October where I saw the consultant. He asked me my symptoms, gave me the quickest internal examination I have ever had in my life and said I would need another ultrasound scan at the hospital (the other scan had been at a private clinic). He also said he would like one of his colorectal colleagues to have a look at me to rule out any bowel problems. No bloods were taken for analysis at this visit.

On 22nd October I had another scan. Again the sonographer was pleasant and again explained everything she saw. There was a cyst on the right ovary but she did not think there were fibroids in the uterus. There was no mention this time about any fluid in the pouch of Douglas.

On 22nd November (the day before my 55th birthday) I again attended the outpatient clinic to be reassured by the consultant that my problem was due to nothing more than a small cyst - I would be listed for a laparoscopy but, he said, he might have to proceed to a hysterectomy if it was necessary. Again no bloods were taken. I received an appointment to see the colorectal consultant at his outpatient clinic on 4th December. Again I attended, to be seen by one of the consultant s registrars who, after examining my abdomen and discussing my symptoms, agreed that my problem was gynaecological rather than anything that the colorectal surgeons could correct. I now waited to hear from the hospital as to when I would be having the laparoscopy. I was by now getting pain more regularly and it was beginning to dominate my life. I was then surprised to receive yet another appointment with the gynae consultant. I was not able to keep this appointment because of my commitments, so finally I got to see doctor on 25th January 2002. When I arrived at the clinic I asked the nurse why I had been called for again as I had been listed for a surgical investigation. She spoke to the doctor who reassured me that my problem was nothing more than a small cyst, but that he would send me for another ultrasound scan.

He did ask me if I was still getting pain, and when I said yes and it was now almost constant, he asked the nurse to bring a blood vial and proceeded to take some blood. He did not tell me why he was taking blood or for what test and I did not ask because I just assumed it was routine bloods which are done on a daily basis in any hospital. The scan showed that the cyst had grown, it was now 4 cm. I had also received a date for the laparoscopy - it was to be in the Day Case Unit on 19th February. I was relieved because now at last I would get this pain sorted out and I could get on with my life. I was, however surprised that it was to be a day case, because I had been told that the consultant would put me on his genera! list in case he had to proceed to full hysterectomy.

What happened next was to turn my life on its head! On Wednesday 13th February at about 12.30 p.m. I got home from college (I had been studying for a BSc in Podiatry at Salford University for a year and a half) and checked for any phone messages. There was one it was from a colleague of the consultant, saying that he had taken over my case. I was instantly alarmed because I knew that consultants only - phone a patient at home if there is something drastically wrong. I was told not to attend for the laparoscopy - it transpired that I needed a CT scan really urgently and I was to telephone the specialist nurse to get the details straight away. Alarm bells were ringing very loudly I knew that a CT scan meant that there was a possibility of a malignancy I telephoned the nurse but got the answer machine and left a message - I was feeling just a bit frantic by now!

My husband had been away for a couple of days and was not due back until the evening so I was all alone. The phone rang and it was the nurse, who explained that an appointment had been made for me for a CT scan the next day The blood test done in out-patients had shown a high possibility of a malignancy on the ovary and the CT scan was to show the extent of that malignancy. She said she was very sorry all this had to be done over the telephone and that she would much rather have told me in person.

On Valentine's day (14th February) I had the CT scan. The following Tuesday I went to the out-patient clinic yet again, to be told that I had a tumour on my right ovary, now measuring 7.5 cm, and that I would be coming into hospital on Sunday 3rd March to have a total abdominal hysterectomy bilateral salpooophorectomy, omentectomy, and possibly a temporary colostomy due to the fact that, if the bowel is affected, some of it may have to be removed. So much for ‘just a small ovarian cyst nothing to worry about! I duly had the surgery (and I did not need a colostomy although the bowel wall was affected) and I recovered very well. The staff on the gynae unit (called the Jasmine Suite) were excellent. I am now receiving chemotherapy at Christie Hospital which commenced on 29th April. I am participating in a clinical trial that means I have four cycles of carboplatin then four cycles of taxotere at three-weekly intervals - rather than six cycles of carboplatin and taxol. Chemo is no fun! I must admit that there are times when I've thought that life is pointless - I have cancer so what is the point in going on? Other times I feel that there is everything to live for and I m going to fight, with a lot of help from medical science. I have had to give up my podiatry course and also my nursing, for the time being anyway. The one thing that makes me very angry now is the fact that I was not given that simple blood test, the CA125, when I first presented at the hospital outpatient clinic. Given my symptoms and my age it should have been a routine blood test. I was repeatedly reassured by my consultant that it was just an ovarian cyst and not a very big one at that. In fact I felt a bit of a fraud at bothering him for such a triviality I was referred to another doctor when it was known that there was a possibility of malignancy without any explanation. I never received any form of communication from my consultant informing me of his decision to refer me to another consultant. I can only assume that his arrogance will not allow him to admit that he was wrong with his diagnosis. No doctor should make a definite diagnosis until all avenues have been explored - especially where medical science has developed tests that will aid diagnosis.

Nothing would have changed the fact that I had cancer and probably had had it for some time when I first went to see my GP. However, had the consultant taken blood for the CA125 initially the tumour would probably have been smaller and a little less invasive. I have never made a formal complaint about what happened but I only hope that, if another patient presents with similar symptoms to mine, a CAl25 is a routine test.
Jane Viney

Thank you, Jane, for this explicit account of your tortuous journey to diagnosis. I feel quite strongly that when you say that "I can only hope that, if another patient presents with similar symptoms, a CA125 blood test should be carried out" that ‘hoping' just doesn't seem enough. Any suggestions for the way forwards, anyone?

Join Gina in Snowdonia

I wish that I had known about Ovacome when I had ovarian cancer in 1996: it would have been so helpful and reassuring to talk to someone who had been through it all . I had breast cancer in 1992, they only found lumps in my glands, so they were removed, followed by six months chemotherapy The cancer was found at a breast screening session and J was very fortunate that it was.

Then in 1996, just before David and I were due to complete on a derelict farmhouse in Snowdonia, I was diagnosed with ovarian cancer (my stomach blew up, within a matter of days). On 14th February I had a hysterectomy followed by six months of chemotherapy David moved to Snowdonia in the April, along with our great Dane dog, and I stayed with a friend in Cardiff to finish my treatment (with the odd couple of days between treatments in North Wales between chemo sessions).

At the end of July after the final treatment (and after a week in hospital because my blood levels were dangerously low) I arrived up here at Ffridd Isaf. Three weeks later, I was up on the scaffolding with David, removing what was left of the slates from the roof, ready to re-slate. And I haven't looked back since. The farmhouse had no running water, no bath, no toilet, no kitchen, half a roof etc., but three years later, and doing all the work ourselves, we opened for B&B and Ffridd has now been honoured by CADW and been Grade 11 listed.

I cannot now remember how I first heard of Ovacome, I think it was an article in a daily newspaper, but I joined and then joined the Fone Friends, adopted my local hospital and now have become a co-ordinator in the Liverpool, Merseyside, Manchester, Cheshire and North Wales Group. PMA - Positive Mental Attitude - is a wonderful way to beat the cancer, and, of course, this wonderful lifestyle and fresh mountain air is a real bonus.
Gina Kent

Nothing can rain on my parade

I've just had my first ‘after-chemo' check-up - 'after-chemo' because my last chemo was on 14th April, my sister's 40th birthday At check-up six weeks later and my CAl25 was 7. We were all very excited but I wanted a good CA125 with chemo out of my system. Some drugs take a long time to clear, and my three-month check in August was the one I wanted clear and it was, 5.5. I was told that if it was the same in November I needn't be checked again for six months. After being diagnosed with Stage 3 C in October 2001 I never dreamed that nearly a year on I would feel so well and happy back to work being a proper moody mother with attitude (my children s words). Life is great. I was so pleased to read in the summer issue about people who are years down the line, it gives me hope for the future. I'd like to tell Peter Walsh that I am 41 years old now and everything he said about his wife's treatment and side effects was almost identical to mine. My fingers and toes were so painful at times that all I could do was cry, put on the electric blanket which helped and try to sleep, but when I found vitamin E it was a godsend to me.

I was 7 stone when I left hospital, but after chemo I was 10 st 8 lb (I am now on a diet). The worst was not the operation or chemo but people! My husband and I decided to go to Tunisia after such a dreadful year. The holiday was fantastic, the children had me paragliding, swimming, dancing ‘til after midnight and soaking up lots of sunrays. We met some lovely people but they never joined us. I believed that I looked normal, but of course to others I didn't: I was still bald and bloated by chemo and steroids. We were waiting in the queue for lunch one day and I sent my son to get some chicken; when he returned I noticed that he had eaten it all, so I told him it wasn't fair, what about the others? So, typical of an 11-year-old, he said:
"well, they can get their own and join the queue." A lady behind was listening and butted in by saying "Don't worry, love, you don't need it". We all laugh about it now but at the time I was so hurt. I wanted to shout "1 look great, I have had the worst year of my life and I feel great now", but of course I didn't, I just walked back to my table totally destroyed.

A couple we met on the way to Tunisia were at the airport on our departure and I went up to them to ask how their holiday had been; the man just walked away though his wife was lovely and spoke to me. I was so embarrassed as he started talking to my husband about football, but spoke as if I wasn't there, it was sad really. I am not worried about it now because nothing can rain on my parade!

I would like to thank so many people for getting me through this, I went to Pontins and drank so much red wine celebrating, that I ended up unconscious, one glass is enough now. Cindy my friend, had to carry me back to the chalet with the children following and I was sick all over her shoes, they were open toes as well. Sorry Cindy. Gina my friend kept me laughing.

What is your wish for today?
Ruby my friend who took me to Wales to see my relatives especially one who has lung cancer through asbestosis, kept me going with funny text messages, one especially I'll give you all to read as I think this is beautiful. "When Cod opened the door of Heaven he saw me and asked ‘what is your wish for today? I said ‘please take care of the one reading this message for ever . I'd just got out of hospital at the time and it made me cry As for my family well! My husband took care of the kids, the housework, the washing, the cooking and me. Thank you. My mum bathed me, walked me, fed me with cream cakes every morning, coming to chemo with me, buying my lunch and holding me, she was my angel when each time I was told my blood count was too low and I would have to have another one and wait an hour. She ironed everything in my house and still does. Thank you. My dad now shares our dog, walks him, feeds him and has him when we go away.

Diamante eyelashes
My sister had the kids whenever I was very bad or just to give me a break and had a brilliant 40th where I wore false diamante eyelashes and partied all night. My mother and father-in-law phoned every day came to chemo with chocolates and took me home and everything. Thank you. On the final day of chemo I fell over and broke my ankle and they all started again. Thank you, Ovacome, for listening and giving me such good advice. I would like to volunteer my services at this end in Sussex. I can do most anything on a PC I would really like to help, I did think of raising funds by rock climbing, but after breaking my ankle I m off climbing for a while. So please give me ideas and I will raise lots of money if I can. I work in a school so I could involve the children too. I was sent a copy of a new magazine called ICON it is all about cancer and success stories and studies, with an A to 7 on eating. I hope some of you read this, as it is very helpful. None of us knows what the future holds, but I know I think positively and live each day to the full and will be happy whatever. My number is 01323 890749 if anybody in my area needs cheering up.
Joan Mechen
Seaford Sussex

Joan sounds as if she has a marvellous family and friends who have really helped her. At the moment I know she is busy organising sponsored events at both the school swimming pool and the local football pitch. She intends to present participants with Ovacome medals. I hope Joan s enthusiasm will inspire some of you, as she has me. I'll be organising a cycle ride in Surrey next May so look out for details.

Remembering a Friend

My daughter Beccy and I travelled up to Huddersfield on a glorious day at the very beginning of September, to see the concert that Jane Hobson organised in memory of her dear friend Sheila Wilks who died after a courageous five year battle against ovarian cancer. Beccy and I stayed in a lovely lodge in the town; the day was so hot even in September that a tin of Vaseline left on the dashboard turn to fluid! After a lazy afternoon we enjoyed a delicious meal in a local bistro and made our way in our best clothes to the Huddersfield Town Hall.

ZULU SONG
The concert started with the sight of many men all clad in black walking in darkness towards the stage carrying a lighted candle: this was our first introduction to the Honley Male Voice Choir, who enchanted us with their rendition of Siyahamba, a traditional Zulu song, and various other songs including a wonderful performance of Singing in the rain complete with a medley of colourful umbrellas! Beccy and I are from the South so have never seen a male voice choir or a real life brass band in action. But almost immediately we seemed closely in touch with quite a few of the members of the of the ntl Skelthorpe Band. We had assumed that a brass band would a bit stuffy but not at all, the percussionists in particular enthralled us with their enthusiasm for their performance.

TITIVATING!
What can I say about Jane: she was magnificent and so versatile. She sang the Haban era from Carmen by Bizet, looking charming as a gypsy girl dressed in red carrying poppies in her basket. I expected her to continue singing other songs from traditional operas, but was surprised to hear her saucy and titillating rendition of the Tipsy Waltz, the whole audience were laughing, she really has a special talent for entertaining.

GRACE DARLING
One completely unexpected addition to the concert was the artist Granville Danny Clarke, who has appeared on Watercolour Challenge. His challenge was to complete a watercolour on stage within 15 minutes. He told us the story of Grace Darling, whom many of you will remember from the Schoolgirl's Annual as I do, and went on to produce a painting of the sea, whilst recounting the story. On completion his work was auctioned, I would have loved it but sadly I m very poor (it did, however, raise over £600). The most poignant part of the evening for me was whilst he worked and the audience was avidly engrossed, Jane appeared on the balcony dressed in an emerald low-cut gown (reminding me of Scarlet O'Hara) whilst singing Blow the Wind Southerly. I found that I had tears in my eyes and goose bumps on my arms, truly wonderful.

RULE BRITTANIA
Remembering that Jane had worn some really enviable costumes, I was a little disappointed to see her in quite a shapeless red sequined number towards the end of the concert, which she had obviously chosen specifically for when she sang several sea songs. The audience joined in the old favourites with gusto, and finally when Jane ended with Rule Britannia the audience, bursting with patriotism, waved Union Jacks, a wonderful sight to see. We had not come to the end, however: Jane still had a trump card. With one swift pull at her dress, it fell to the floor, and there she was sporting yet another wonderful sequenced mini-dress of the Union Jack! The whole audience roared with laughter and cheered and showed their appreciation of such a wonderful evening and entertainer by a standing ovation which was second to none. Hundreds of Ovacome balloons floated down from the ceiling, a fitting end to a concert whose proceeds, Jane told us, would be over £7,500 and would be donated to Ovacome. I feel really pleased that I took the time to travel to Huddersfield, to enjoy this truly wonderful evening's entertainment. But, more than that, it has been a privilege to witness a very real friendship between two women such as Sheila and Jane although now sadly ended. Sheila will be remembered by those who didn't know her because of her friend's commitment to her.

My Health Scare

Christine Hamilton today revealed she is awaiting checks for a health scare as she arrived back in Britain after nearly two weeks in the Australian jungle for the TV show I m a Celebrity: Get Me Out of Here! She said she had still not been given the all clear . The self-confessed battle-axe , who showed her softer side during the show, told This Morning "I think I'll be OK." The wife of former Tatton Tory MP Neil was talking to viewers, with one caller explaining how she d been diagnosed with ovarian cancer. Christine told her: "I have sympathy with you because I've had scares in that direction, shall we say, and haven t got the all clear yet." Pressed further by presenter Fern Britton she said, "I've got a hospital appointment waiting for me shortly, but I think I'll be OK" "That s all I want to say at this point," she added. She went on to say that after appearing in the TV show she had heard herself being described as a national treasure which was very nice. "It was an incredible privilege to take part," she said.