Experiences
Don't cope alone
I didn't want to get in touch with Ovacome, and I didn't want to get involved. I knew I could cope without any help from anybody else, after all, I'd done it before.
In 1986 when I was 37, I'd suffered renal failure and was on dialysis for nearly two years. Dialysis was very time-consuming and tiring, and I needed blood transfusions every four or five weeks. My husband did most of the housework, I was working part-time, and my children were 12 and 14. The goal was a kidney transplant, which I was lucky enough to get in August 1988 and I'm eternally grateful to the donor's family for their generosity, kindness and thought for others in their grief.
Last year I was diagnosed as having ovarian cancer. A transplant surgeon came to assist with the operation as my transplanted kidney is in my groin. After six treatments of carboplatin (used as a safer option to protect my kidney) I was cast adrift into the big wide world and felt I needed support so I rang CancerBacup for advice, close to tears, because I had to say those words "I have cancer".
A friend, a former Renal Ward Sister, gave me a copy of an Ovacome magazine and just before Christmas I plucked up enough courage to contact you. I rang my Fone Friend and discovered that a group regularly met at a Fenwick's restaurant in Newcastle. Unfortunately at the end of January I had a recurrence, so I was told there was no other option but Taxol. I had a laparotomy and spent a total of four weeks in hospital because of bowel problems and left very weak and unable to walk.
Luckily, this time I had another goal and that was to take part in the Transplant Games that were being held at Tyneside at the end of July. I was part of the local organising committee and eventually got really involved with the running of the Games, spending two or three days per week for about five weeks, helping in the office. It was very hectic but I felt that, at last, I was getting my old, normal, life back again.
There were numerous events to take part in, such as snooker, sailing, squash, tennis, cycling, archery, bowls and a full athletics programme at Gateshead Stadium on the Sunday.
Our guests included Heather Mills (Paul McCartney's girlfriend), Steve Cram, Brendan Foster and Jonathan Edwards who presented medals, ably assisted by my husband, known as 'medallion man'.
I helped, amongst other things, to organise the VIP lunch and Gala Dinner, and took the AGM and Management Committee Minutes in my role as Secretary of the Transplant Sports Association of Great Britain. 1,200 people took part from 56 hospitals - over half the competitors were children, the youngest just three or four years old.
Last year I wasn't medically fit to compete but I was determined to try this year so eight weeks after finishing my chemotherapy I took part in the Veterans' Table Tennis and Badminton and managed to get silver and bronze medals. To be honest, in my age group there's not too much competition, but I found having to play to three sets in both competitions very exhausting. My toes, knees, right wrist, elbow and shoulder felt like they were on fire but I DID IT, and I was so proud. I felt as if I had to push myself to the limit in the hope that I can challenge and fight this cancer and boost my immune system.
The Games will be held next year at Leeds and I hoping to add the walk and swimming to my events. In October I'll be taking the Management Committee Minutes again at the Volleyball Competition. The Chairman of the Transplants Sports Association, you've guessed, is my transplant surgeon whose support for me has been immense.
I feel so lucky to have my Ovacome 'ladies who lunch' - actually we meet too early for lunch but partake of tea, coffee, nibbles with lots of chat and friendship. I don't know how I would have faced up to all of this without them. I just need to pick up the phone and their help, support and advice will be there.
I've taken part in eight transplant games now and we always end the Gala Dinner by singing 'You'll never walk alone'. It's very moving - 1,000 people linking arms, many of them crying.
If you are reading this and you feel as if you're alone, you're not: your friends are here. Please get in touch and I'm positive you'll help yourself by getting involved.
Sandy Lawson
Thoughts to comfort you
- It's better to express your feelings than to bottle them up
- Hope and trust help counteract stress
- Hope gives you control
- Consider yourself an equal partner with your doctor in achieving recovery
- Remember, you have power over your body
- Don't save up real living for tomorrow, live your best today!
Carol Robinson's story
My story begins in 1987. I felt pain in my left breast. My doctor could find no lumps so he sent me home saying you must have pulled a muscle. We women knew our bodies very well and I knew I had a problem.
About a year later - after going backward and forwards to my doctor - to put my mind at rest I was given a mammogram. Before this the nurse asked me about my family history. My sister had five cysts removed when she was 30, my age at the time was 43, cancer did not take the life of members of my family. My mammogram was not clear, I was told that I had a small cyst.
For the next 18 months I presented myself at the breast clinic, trusting in them totally. Sometimes the doctor would say "I can feel the lump" and they would put in a needle and try to aspirate it. They never really managed to find any fluid and it was always very painful. Sometimes they would say they couldn't feel the lump and it must have gone, but not once was I offered a biopsy. During this time I was getting very agitated. I felt a problem. I had a dull ache in my breast: just to remove the pain I would remove my bra and hold my breast, the pain was getting progressively worse.
One day, I decided to pay for a second opinion. I paid £180, to find myself in front of the same doctor I had been under for the last 18 months.
The local hospital had lost all my mammograms and so I had been charged £180. I insisted on taking these new ones home. The diagnosis still seemed to be the same but the doctor knew I must be serious to go private and it was only at this point I was offered a biopsy. I was told that I had malignant cancer and I would need my breast removed.
I was devastated, these doctors tell you to come as soon as you feel anything. I felt I had come early and yet it was only my persistence that had got me to this point. You can imagine how I felt. I thought by now the cancer would be all over my body. I felt lonely and very scared. I didn't want to die. I had a husband and three boys - my life felt good, although spiritually very dry. I had always believed in God and yet he seemed so unreal. He didn't seem to be a power I could ever feel or ever get to know, even so I fell on my knees and prayed "God, if you are really there show yourself to me".
I had my operation, praise God I didn't lose my breast - I had a lumpectomy followed by radiotherapy and they found no cancer in my lymph nodes.
I came home from hospital so glad to be alive. The trees and flowers looked so beautiful, in fact anyone who has had cancer will tell you that you look at things with more wonder and appreciation when you have had to face your own mortality. At one point I even worked out what I would be leaving people in my will. Now I needed God more than ever, I didn't want to die yet. I knew God could heal so I started to go to church and over a few years started to read and understand the bible.
I went every three months for my check-ups and stayed free from cancer for about six years. During that time my mother-in-law died of breast cancer and my mother got breast cancer after me and died of it. We lost our business, our home and about £250,000. I was now 49 years old and homeless.
Because of what had happened to me I was full of anger, resentment, bitterness and fear, but in my spiritual walk I had found God, I did by now know that he loved me and I had a joy and strength covering up all the emotions within me.
By now it was 1993. Suddenly my stomach started to swell up; I felt very well in myself and was suffering no pain. I remember a few months before having a small discharge but just put it down to the change of life and got on with life. I was just beginning to feel they would discharge me from the breast clinic. The swelling didn't go away, it got so bad that I couldn't breathe. I was told it could be cancer again. I was admitted to hospital to remove the fluid and then sent home to wait for a bed. Within four days the fluid had built up again: this time I was admitted.
My prognosis was dreadful. They said it could be secondaries: I had a lump by my ovaries, one in my liver and bits showing in my womb. They removed my womb and ovaries and then gave me chemotherapy. Half way through the treatment I had a CAT scan, and they discovered that they had left a lump behind the spleen. The doctors told me the chemo would probably not work and if it did it would not be a cure but would give me a little more time.
I praise God my diagnosis was on tape because I was so devastated I would never have taken it in. The doctors thought I would have two years if I were lucky.
It is difficult for me not to talk about my faith because God came so close to me at that time. I knew from the word of God that Jesus came to give me life and life in abundance. Sickness and disease didn't come from God. I had to let go of fear, unforgiveness and bitterness. I walk with the Lord and it is so amazing but I am sure it is the cancer you want to hear about. At this time God was my only hope so I got deeper in to him.
I had my course of chemo and responded very well, much to the surprise of the clinic. The lump behind the spleen had shrunk, before the chemo I asked if they could remove it, they said no.
Over the next seven years I had disappointment after disappointment. Every 18 months to two years my CA125 would go from 8 after treatment to 200, then I would be told I needed chemo again. It got to the point where I could not stand the smell of the hospital. If I thought about the chemo itself I would sense the coldness in my blood as the chemo circulated around me, it was like a nightmare the reality of it all.
I had made up my mind to find out what God had to say about my health and claimed his promise to me every day. He says his word brings health and life to all my flesh. Last February I felt the Lord say he would heal me through the hospital profession. My blood had gone up again, I had a CA125 of 180, the CAT scan showed the lump behind the spleen. The doctor told me he had some good news, a new surgeon had joined the team and he was prepared to operate, never once in seven years had this been an option.
I met up with the surgeon and he told me that it was a very difficult situation. He said that if they opened me up and found more cancer than the lump behind the spleen then they would close me up and send me home. I also had to have an injection against pneumonia in case he had to remove my spleen.
I said to him don't worry, God told me he would give me a miracle and you will be part of it. I said I felt very confident that everything would be fine. I had my operation and believe it or not they found no cancer in me. They removed some fatty tissue from behind my stomach, convinced that they might find some nodules - but nothing was found, no lump behind the spleen - NOTHING. I stated that my CA125 was over 180 and that this alone indicated that there must be cancer present. You have removed no cancer from me. If I have another CA125 and that is normal it must prove that I have had a miracle - I had that test and it was normal!!!
I praise God for his word is true. During the seven years I suffered with ovarian cancer my faith grew so strong. I feel a different person, when God heals he heals my mind, body, spirit and soul. He heals the complete person. I have a new life in our Lord Jesus Christ that passes all understanding. The joy of my salvation and strength I never thought possible, and all because I dared to believe.
I know this is a long testimony but it was a long test and I don't know what to take out. I can think of plenty to add but I won't. God bless you all.
Carol Robinson
Hants
In memory of Mandy Robb
My partner recently passed away after a long brave fight against ovarian cancer. She always promised herself she would write her story for Ovacome but never had the time to commit her words to paper. So I thought it only right that her story should be told, and decided to write it myself for a number of reasons: first, in memory of my beloved girlfriend and second, because I hope to convey the manner in which she fought this terrible disease head-on.
Stubborn determination
Her stubborn refusal to let it get in the way of her life, her determination to carry on as normal - even while undergoing chemotherapy she never lost her sense of humour. Her wicked sense of fun was so infectious that she was impossible to dislike and would entertain me, her family and the professionals who looked after her.
It all began in February 1998: while the two of us were lying awake late in bed one Sunday night, she noticed a lump in her abdomen. It seemed to move quite freely and wasn't sore to touch. The craziest idea that came into our heads was that she was pregnant, cancer didn't even cross our minds.
After seeing her doctor and arranging an ultrasound, we waited for the results. About two weeks later, late on a Sunday night, Mandy complained of feeling nauseous. She then became uncontrollably sick and I called for a doctor to come and have a look at her. The doctor examined her and decided that we should get her to the hospital. We arrived at casualty where they later admitted her to a ward so they could carry out tests to ascertain what the problem was.
After a series of tests she was told she had a cyst on both her ovaries. Still cancer didn't enter our minds, our main concern was that because they might have to remove her ovaries our ability to have children together was going to be taken away. Mandy was only 23 years old and I was 25.
The operation to remove the cysts took place the next day and was a complete success. When I approached the consultant he told me that one of the cysts looked unusual. I thought nothing of it and cancer still didn't cross my mind. Later that day I decided to look at some books relating to Mandy's condition. It was then that cancer first entered my head. The book mentioned that cysts can turn out malignant, but I thought "no way", Mandy was only 23.
The bad news
One week after the operation while at home I was awoken by the telephone. It was a nurse at the hospital, who asked me to come in as soon as possible as Mandy had just received some bad news. I asked her what it was but she would not tell me. As I put the phone down I had this bad feeling that the cysts were malignant.
I rushed as fast as I could and on arrival was met by the nurse who took me to a small room. It was there that I learnt that my girlfriend of five years had cancer. I just cried out, "Oh my God." I couldn't believe it, she is only 23, I kept saying; all the emotions I'd managed to keep to myself over the last few weeks just came out. All I wanted was to be with Mandy. The nurse led me to the room where she was. The door opened, she was sitting down crying. I rushed in sat beside her and we both cried and hugged. She kept saying she was sorry. It was so typical of Mandy to be thinking of everyone else but herself. After we both calmed down she turned to me and while fighting back the tears she said to me that we are going to fight this.
A rare tumour
Then came her second operation, within a couple of weeks, to remove what was left of the ovaries and the omentum. A full hysterectomy was not performed due to her young age. I also believe they left a small part of the ovary, owing to her young age and the possibility of preserving her eggs in storage before the commencement of chemotherapy. They decided to do this to give Mandy and I the option of still being parents.
Then we learnt her particular tumour was extremely rare, small cell, very aggressive and that it had burst, but just to make us feel better they did tell us that they caught it at stage 1A, the earliest stage, I believe. Because it was so rare it was decided she would undergo her chemotherapy at the Royal Marsden Hospital in Fulham, London.
She received six courses of etoposide and cisplatin along with three doses of bleomicin - an exhausting treatment that took away her beautiful, golden curly hair and made her physically and mentally tired. But her sense of humour remained throughout and her refusal to let it all get her down was a constant source of inspiration to others and me.
She had nicknames for the drugs and would take the mickey out of herself and call herself "Frank Leboeuf", after the Chelsea football player with a bald head quite similar to her own. Her humour and positive attitude helped make her many friends at the hospital, including Karen Summerville, her clinical nurse specialist, and she had frequent telephone conversations with Debbie Howells.
Living life to the full
On her off days from the hospital, if she was feeling well enough, we would always do something we always had wanted to do but never seemed to have the time, perhaps to visit a particular place or go to a posh restaurant. What struck me about this was that when your life is threatened in some way you tend to live life to the full, appreciating everything that you have.
It seemed a long time but we got through the chemotherapy. Her sheer will to live, her love of life and her love for me and her supportive family got her through the dark days. Our love for each other became stronger and I believe she had her heart set on us getting married one day. The light at the end of the tunnel was getting brighter. She entered remission and decided to resume her interior design studies at Kingston University. We had our first Christmas alone in 1998 - just the two of us - and it was the best ever. Life seemed to be getting back to normal, she resumed her studies and I was doing well at work.
In February 1999 she went to hospital for a CT scan with a follow-up appointment to see the doctor. He came into the room where we were sitting and didn't waste any time telling us that the disease had returned. She shouted out "No! All I want to be is a designer. I just want to spend my life with Mike!"
The chemotherapy resumed with a different course and when that had no effect surgery was planned to remove the tumour which was located in her pelvic region. That was followed up by a course of radiotherapy. By this stage she was complaining of feeling tired, we put it down to the radiotherapy.
The final diagnosis
A couple of days before her last session she had an internal bleed and was rushed to hospital. She was transferred to The Royal Marsden where we learnt that the disease was present in the liver and the dreaded terminal diagnosis was made. She had weeks to three months to live. She had just turned 25.
We took her back to Ireland, her birthplace. She passed away without pain and surrounded by love, a feeling I'm sure is with her now. Hopefully she'll be waiting for me keeping my seat warm where we can be together again surrounded by love and happiness for eternity.
I'm sorry it ends on a down note, but if I can convey the strength, the sheer will to live and not let this unseen killer get her down, the determination to live her life not only for herself but also for her family and me. My fondest memories are of her sense of humour through it all and her ability to make others laugh and not let them feel sorry for her. She fought the disease the only way she knew how, taking it head on, bravely and with dignity and used her sense of fun to get through it all. I hope the way Mandy bravely fought the cancer inspires others, for me it would be the best way to honour her memory, for her she would not want it any other way.
Mike Gibson
Editors' note: My thanks to Mike for this very touching piece. Mandy was indeed an inspirational woman and our frequent chats helped me to focus on my own future also.
