Regular features
Letter from the Chair
Welcome to the spring newsletter. At Ovacome it's been a very busy few months. At last our office is up and running, marking a significant point in our evolution. Ruth and Frances have been doing a fantastic job sorting, organising and wrestling with phone companies and computers; we will all benefit from their efforts. If you've called the office recently you will have noticed that our opening hours have increased. The phone is constantly ringing, so phone lines close at 1 3.00 to enable the girls to act on other work (post, post and more post!!).
We are also holding a photographic exhibition, and our PR company has been working overtime to ensure a big press response. Several articles in women's glossy magazines are coming up in the next few months, as well in the national press, and on television closer to April. Many of you have offered to talk to the media, so we may be in touch soon!! If you would like to help further with this year's Ovacome day, please do give us a call in the office.
For the past few years we have all been lucky to receive this superbly edited newsletter. Sadly (for us) Debbie Howells, our editor, will be resigning at the end of the year. She has been a terrific worker on our behalf, running the office up until last year, and still keeping us up to date with the newsletter. As many of you know Debbie recently became a Mum, and wishes to spend more time with her family. She will be sadly missed by us all.
We shall need a new editor to take on this essential role. You don't need experience, just an ability to write, a fair understanding of computers, and a big stick to chase the committee when we're last with our articles (just kidding team!). Debbie will be on hand to give training and support, and we employ professional publishers who are also a great help. Think you can help? Give us a call!
We are also still looking for a new treasurer. This mainly consists of overseeing our financial activities, reporting at quarterly committee meetings, and making an annual report to the Charities Commission. You do not have to be a registered accountant, but some financial experience is necessary. If you have any queries on this or would like to discuss it further, please contact me via the office.
We shall soon be sending the annual report, inviting you to this year's AGM. After much deliberation and feedback from members, we have decided to have this in London. Whilst we enjoy varying the location each year, we often hear of transport problems: even if it is further London is usually easy to get to (if the trains ever get back on their rails!). For those of you who missed the past few newsletters, the AGM is on 7th July, so keep the diaries clear! I look forward to seeing you there.
Well it's actually stopped raining, and the troops are restless - time for some fresh air I think. Love, as always,
Louise
Letter from the Editor
I have recently made the decision, after a lot of contemplation, to resign as newsletter editor at the end of this year. It was a very difficult decision but I am five years post-operation in July and I have reached a point where I should not totally forget what has happened to me - I could never do that - but to move on and concentrate on my family and fostering duties.
I am thoroughly enjoying being a mother to Grace, she is just a dream come true, but also find fostering totally fulfilling and possibly the most rewarding thing I have ever done in my life. To bring joy to these children and re-introduce them to their families after such trauma is just amazing and something that I want to continue to do.
David and I are also about to embark on adoption and are hoping that our family will be complete by the end of this year. To be a full-time mum was always my dream as a child and I now feel, after nearly eight years of marriage, that I am almost there. When I go in to something I must give it 100% and I do not feel that I can do this if I am still working for Ovacome, and vice versa.
Ovacome came in to my life after my treatment had finished and I felt that I had reached a crossroads in my life: should I go back to my old job in London (after nine months off sick), or should I move on and help others? I had felt positive during my own two-year ovarian cancer journey and knew that I could benefit others.
Contacting Ovacome changed my life - FOR THE BETTER. I started off as a committee member and took over the role of Newsletter Editor after six months. When Alex went on maternity leave to have Tabitha in December 1998 I felt that I could take on some more responsibility and so offered to cover her role for six months. The charity during this time was growing at an incredible rate and when the time came for Alex to return to work, the committee decided to hang on to me and give me a new role. It was at this time that I became Charity Development Manager: I continued to answer the telephone lines, edit the newsletter and pursue sponsorship for the charity. The latter was an impossible job, with a pile of "no letters", and thus very disappointing to me!! I was despondent but never gave up.
When at long last I became a parent to baby Grace in June 2000 I resigned from my paid position but agreed to continue as editor. It is with a lot of sadness that I will hand over this role but I feel I have benefited the charity as much as I can and there is a vacancy for somebody else to continue to improve this much read publication. Are you interested? If so please contact the office for more information. I have worked with a great committee over the years I have been involved with the charity. Some have unfortunately passed away, some moved abroad and some resigned, but some faces still remain the same. If you feel you have a lot to give and could benefit ovarian cancer sufferers (once you are feeling better and in remission) I would highly recommend becoming involved with us. It is both rewarding and for me especially has taught me so much. I am now a mine of information - not only about ovarian cancer and its treatments but also: surrogacy, fostering and adoption. If you can spare some time and want to give something back to the ovarian cancer community, contact the office. Our ACM is fast approaching and this is the annual opportunity to be voted on to the committee. IT IS ONE OF THE BEST THINGS I EVER DID.
Well I hope you enjoy this issue. If there is anything you feel that you would like to read in a future issue, or you would like to send in your stories, please do so via the Ovacome office. Lots of love
From our Postbag
In response to Judith
Thank you for the newsletters, a great source of information. Now my cancer has returned, I am reading them all again to see what information I need to know. I did e-mail you in November to ask for a copy of the Spring 2000 issue but have not to date been sent one [editor's note: they are available on-line at www.ovacome.org.uk/ovacomej.
I am writing because of Judith Wheeler's story. I wonder if I can add some information about - ‘previous histories". As a teenager in 1967 I had my appendix removed as a non-emergency case, in the days before surgeons had scans to look at. When I was opened up, it was discovered that the cause of the pain was not the appendix, but an ovarian cyst about twice the size of my ovary. This was sent away and found to be benign. They took my appendix out during the operation, even though there was nothing wrong with it. I told my GP about this when I went for my postoperative check-up and he was very surprised, as he had not been told about this. I believe to this day that there still is nothing in my GPs notes about my ovarian cyst.
From 1970 to 1975 I was on the pill. I had children in 1976 and 1978. I chose to have IUD contraception after that. In more recent years I have reported to my GP that mid-monthly I often had a sharp stabbing pain, which I guessed was ovulation. This sometimes lasted momentarily or occasionally may have lasted a few hours.
These are just small items to add to Judith's story, but may all add to make a more interesting "big picture".
Moira Lloyd
Herefordshire
Great support
I would like to say how pleased I was to receive your newsletter. Where I live, there is no cancer support group, so it is great to hear all the news in the Ovacome newsletter. First of all, I would like to ask any readers if they have been to the Bristol Cancer Centre and what were their views? I would be interested to hear - good or bad. Also is there any one else reading this newsletter who has clear-cell ovarian cancer? I have been told it is quite rare. If anyone has any information or wants to get in touch, please phone.
Lorna Calder
Caithness
Editor's Note: If you can help Lorna please do make contact with her. Her telephone number is 0184 7851 778.
Fundraising News
Jacqui Whiles' sponsored slim
My name is Jacqui Whiles. I am 53 years old. In February 1 999 I was diagnosed with ovarian cancer. This was a total shock (even though I had a history of "female problems since childhood), mainly because I had a total hysterectomy, with ovaries removed in August 1 995. I never thought I would get ovarian cancer! However, after major surgery and four months of chemotherapy (Taxol and Carboplatin) - which resulted in total hair loss - I am being closely monitored for the next four years. I've been told to be positive and carry on life as normal!
I used to suffer with polycystic ovary syndrome and for years had battled with my weight. Also, I am a comfort eater and ate my way through my treatment in 1 999. However, having come to terms with my illness, I wanted to be slim. I joined my local Rosemary Conley diet and fitness club several years ago, but was never able to lose much weight. I decided that a sponsored slim might help and Ovacome was my chosen charity.
Now four months later, having maintained a healthy and low fat diet, I have lost 23 1/ lbs in weight, a total of 23 inches and have raised £700 for Ovacome. I feel fitter myself and proud that I have managed to raise funds for such a worthy cause. I only have another 3 stone to lose!!!!!!
I was introduced to Ovacome during my stay in hospital and found the articles interesting. It made me realise how many other women were battling with the same disease. My thanks to Ovacome for your support and encouragement when I needed it! Best wishes to you all.
Jacqui Whiles
Maidenhead, Berks
Editor's note: Our thanks and congratulations to Jackie for her very generous cheque and to her for the achievement of losing all that weight - well done. May your good health continue. August 1999 and August 2000, before and after pictures of me as proof of the diet and that my hair did grow back!!!
Christmas cheer
Every Christmas Arm itage Sykes, the firm of solicitors for whom I work, have a tombola, raffle and book sale and the money raised is donated to a deserving cause. I was diagnosed with ovarian cancer in July 1999 and they have kindly chosen Ovacome as this year's charity. I have pleasure in sending you a cheque for £257.13. I would like to take the opportunity to thank all of you who are involved with Ovacome and in particular the Newsletter editor, for all the marvellous work you do in providing information, advice and support to ovarian cancer sufferers and their families.
Eileen Dundon
Huddersfield
Jumble proceeds
I have great pleasure in enclosing two cheques for £310 for your Ovacome funds. It was raised by Crowcombe WI who have kindly adopted Ovacome as their charity of the year. We held a very successful jumble sale with everyone lending a hand to make it so. It was a friendly affair with people sitting down to a well-earned cup of tea and home made cake after they had found their bargains! Keep up the good work.
Christine Jones
Taunton
Editor's note: Many thanks for this very kind and generous donation and for choosing Ovacome as your charity of the year. It is always nice to receive monies raised at such fun and worthy events. Perhaps people will follow this example and hold sales for Ovacome Day.
Sponsorship required - can you help?
Karen Summerville, McMillan Gynae Oncology Specialist Nurse at The Hammersmith Hospital and President of the National Forum of Gynae Oncology Nurses, is running the London Marathon again for Ovacome again this year. She must be mad - she ran both London and New York marathons last year but has obviously caught the bug!!!
She is concerned that she is going to struggle to find sponsorship again this year and so the committee of Ovacome and Karen would like to ask for your help. Are you willing to sponsor Karen and help our worthy cause? If so please contact Frances or Ruth in the office on 07071 781 861 to pledge your donation. ALSO: do you train on a regular basis, would you like to run this year's marathon? If so please call Frances - we have one spare place that we would love to fill. We appreciate it is short notice but every penny counts and we have to pay for the place anyway.
Raffle receipts
Please find enclosed two cheques, one for £27 and one for £1 20. My daughter Anne Haynes who has ovarian cancer, bought items for a raffle and when my husband Paul had his 40th birthday party she decided to run a raffle in aid of Ovacome. We have already sent over £500 to cancer research but now feel our aims should be towards helping Ovacome if possible.
The Ovacome Newsletter for Autumn 2000 letter from Mike Gibson "In Memory of Mandy Robb" really touched me because my daughter was 24 years old when diagnosed with ovarian cancer last year. If possible I would like you to inform Mike Gibson of this gesture of ours because my daughter sounds very similar to the picture he describes of his late girlfriend. I just hope Anne remains well and gives hope to other young people in similar circumstances. When Anne has completed her story perhaps we will send it to the Ovacome newsletter.
We did attend the Ovacome ACM and will attend any future events if possible and continue to raise funds however small to try and help in some way.
Marie Kiblet
Birmingham
Editor's Note: Many thanks to your very thoughtful daughter for this kind and thoughtful gesture. I will pass on this message to Mike and wish Anne all the luck in the world with her recovery.
