Family Story

Mum's View

I have never had cancer but I have been fighting it since 1988 when my youngest Daughter Savannah was diagnosed with Leukaemia at the age of 3, she was only a baby, a beautiful happy little girl who had become pail and very tired with a few bruises on her arm, I took her to the doctors, he sent us for a blood test at the hospital and the next day we were in Sheffield children’s hospital. That was the start of my fight with cancer. It was like I was in someone else’s life, this couldn’t really be happening to my little girl…..my son Gary was 14 and Joanne was 11 I had to leave them for family to look after back in Grimsby. We spent 2 years going back and fourth to Sheffield for chemotherapy and radiotherapy all the time living are life in this world of parents with sick children, doctors and nurses, needles and blood tests. Every parent knows that feeling of there child being ill even with a cold it tugs at your heart and you just want your child to feel better. I felt every blood test, and every needle that went into Savannah, watching the chemotherapy going into her body knowing it would make her sick and we would be spending the next few nights up with her head in a bucket. It takes over your life, and I wish I could say Savannah recovered and all has been well……….but I wouldn’t be writing this now if it had.
We spent the next 4 years up until Savannah was 9 living a relatively normal life.

Savannah complained of the TV being blurred, I said perhaps we need to take you to have an eye test that was the Thursday, I made an appointment at the opticians for the Monday, we didn’t get there, by Saturday she was vomiting and had double vision. We were living in Portsmouth. I had rang my Doctor and he told me to take her to A&E at Q&A hospital I had no idea what was about to happen……… She went through a series of tests, and the doctor came to tell me Savannah had a Brain Tumour. This was the start of a nightmare, I couldn’t even begin to describe how I felt, or what Savannah went through for the next few months, only parents and families that have been through this nightmare of cancer in the family will understand how it feels. Savannah had surgery and intense radiotherapy at Southampton hospital. Her prognosis wasn’t very good, and I didn’t really know how she was going to survive this time. Well she is now 23 and we have spent the last 13 years fighting many health problems most recently epilepsy. This has developed over the past 3 years, and it has made life even more difficult. Savannah is longing to be more independent and live on her own. I don’t know if this will be possible, but that is our goal at the moment, and we are working with a social worker and other professionals to give her the chance to have some independence. For me it is hard to let go I want to, but have many feelings of guilt, fear, and frustration. When Cancer invades your family it has a massive effect on your life and the people in your life.

I wish I could say that was the only story I could tell, but, again the reason I am writing this is because of my other beautiful daughter Joanne. She is a bright, talented young woman who has a sister, who she has seen grow struggling with cancer. She has been my rock many times as she has grown up.

Then I have a phone call to tell me she has breast cancer at the age of 24. What can I say to describe my feelings, it is very difficult and hard to talk about, I suppose it is like a kind of numbness, things are still going on around you, normal day to day life ( I still had to go to work) I was living in Grimsby with Savannah in my own house, where we moved 8 months previous to be financially better off. Cancer once again took control of my life. I put my house up for sale and lost money doing that, to move back to rented accommodation in Chichester to be near Jo when she was having Chemo. Fortunately Savannah was ok at that time, we were just struggling with her hormone problems, and Eskemia (minor strokes). Well, we got through that, I wonder how sometimes, but always say we really have no choice, YOU EITHER FIGHT OR GO UNDER.

Well as you know by Jo`s website that wasn’t the end, Jo is now fighting breast cancer again and secondary bone cancer, at the age of 31, so we are still fighting. There is no end to that fight only death, that is true for all off us, but as a family engulfed in this horrible disease we have to understand that the cancer is in control of us and could take away 2 young vibrant girls who want to live a full long life which is only what we all deserve and want.
As a mother I have watched my children in so much pain emotionally and physically, that at times it has been more than I can bear. I have had to be strong, for them, but have been so proud of their strength, and now we haven’t gone under, we are even stronger. We have to be to stay in some control of are lives.

I think there are many charities who help families, and we would not have survived without many of then. P.A.C.T. in Sheffield, Macmillan, Starlight foundation, Dreamflight, just to mention a few. These charities are so vital to families giving special happy times to families and long may they reign. Cancer can be a financial drain on ordinary working people. It has affected my working and personal life in a massive way and it has stopped me progressing in both areas.

I know Jo wants this website to help bring families who have suffered with cancer and serious illness together for moral support, any advice, or just a shoulder to cry on. I am happy to help if you want to contact me, or would like to know more about us as a family please email us at www.seizethisday.co.uk@googlemail.com anything that makes people more aware of the implications of Cancer in your family I think is a good thing. Families need all the help and support they can get when going through this terrible time.

Savannah’s Story

Savannah suffers with Epilepsy and Transient Cerebral Eskemia (minor strokes.) She has a damaged pituitary gland and injects herself daily with growth hormone. She takes a large collection of tablets daily to stay on an even keel but has not yet found the correct combination of drugs to control the epilepsy completely. She cannot predict when a fit may happen and regularly has huge bruises where she falls over. All of these problems come from the damage to her body caused by the cancer and its treatment. Savannah had the largest dose of radiotherapy to the brain any child has ever received. The affects of that treatment are still becoming apparent even now, nearly 14 years later. We constantly strive to make Savannah’s quality of life as fulfilling as possible but it is difficult as Savannah’s disabilities do not fit into any category and thus social services have limited resources to help her. She has struggled forming meaningful social bonds and strives constantly to develop the skills to form genuine friendships. She has tried many different types of voluntary work but has not found anything she is truly comfortable with and her health problems constantly interfere. Her epilepsy medication causes mood swings and depression and it is a constant battle to stay happy and focused on the good things in life in this situation. She currently lives with mum but they are working towards her living independently because their relationship is strained, we always take out our frustrations on the ones we love. Below, is her own account of her past illness and current situation. She would welcome any thoughts you may have about her situation and would love to find other young people that understand what she has been through. Please email us at www.seizethisday.co.uk@googlemail.com

Savannan Jones

My name is Savannah Jones I fought and battled through Leukaemia at the three, and when I was nine I was also diagnosed with a brain tumour as well.
I don't remember much of much about the treatment for Leukaemia, but
I remember the treatment I suffered when I had my brain tumour.
The drain's coming out of head after the surgery the feeling absolutely and I mean really uncomfortable, I just wanted people even my family to leave me alone.
But yet the doctors waking me up to take blood pressure and to thermometer under my arm.
Then I just snapped I started swearing at anybody that came near me and this is me I've never sworn in my life.
And so as I said the drain's coming out my head, the surgeon had to stop, because she didn't want me to be more disabled than I am today.
Later we discovered the surgeons had left a leak in my head, Instead of having more surgery they decided a very large needle would be best of course that knowing I was absolutely terrified of needle's they decided to put this very large needle straight through into my head.
So next section in my life the horrible mask I had to wear whilst having my radiotherapy session imagine making a mask then somebody else has another half on the mask and wearing this for at least half an hour to an hour maybe. Oh all the doctors had trouble getting blood out of me as well.
Eventually I got to school taking the worst year of my life without any sort of schooling. People there didn't take me to well to me, because I was different and was different no doubt about that, see not many people have a large scar across their head.
So I was bullied through my school years, it seemed normal that they should bully me. And my tutor read this for instants thanks for nothing, I got tortured for a those years and you did nothing I really dreaded going to the bus stop every day to school because I knew was going to happen at school. I didn't have any friends and the friends have just tolerated me.
You know I'm different and proud that I survived the cancer twice in fact, I've been to hell and back, I know people still stare at me, because still got scar on my head so what not many have been through what I've been through.
It's not easy for me life's not been so kind to me, I have not got one friend in this world that would stand by me.
Well I'm still living without a friend, and people still stare at me the only thing that's changed is my age, I'm 23 years old now.
Well that's the truth about my life it's not all a bed roses but I know I'll get by I've got something to stay for, now I know life is worth fighting for now thank GOD I've got my family behind me.
Sometimes I feel like I'm not meant to be here on this world or this planet my friends always called me a freak I'd always agree with them there 's just one question remaining

WHY ME?
Written by Savannah Jones

Matt's View

Well my wife has been asking me to write this for the best part of 6 months. This is my take, my experience, my emotions, my journey, my side of the story and I really can’t avoid it any more. Sooner or later we will have to face a demon and I truly hope this helps me face mine. I would like to say that I do not intend on hurting any ones feelings or to offend friends or family with what I write. Truth is people can say or do the cruellest things without even thinking at the worst times. Times when you really need them. But I will not apologise, this is real life and as I have learned this year people always say what you want to hear and we all have to find the inner strength when we are at the bottom of the pit of despair and really can’t find a way of finding it. We all have to stand alone and find it, life is a beautiful thing but we have to work for it and as my Persian grandfather wrote in a poem,
“Life is a battle, prepare yourself for war”
I know what he means; at least I think I do. We have to work hard to enjoy it, life that is!
So here’s my side of the experience. I may bounce around a bit. I hope it makes sense.
So its 6th Feb 2008, my wife had been complaining about a difficulty breathing and despite my repetitive insistence refused to go to A&E , we say difficulty breathing I mean serious, can’t walk upstairs, serious! At 30! My mother was over comforting her best friend after losing her husband. I get a call at work from my mother saying Jo is in A&E after real trouble breathing and I wanted to go straight over but my wife and mother in law did not think it was necessary. I found this hard, I am the husband I love my wife and wanted to stand by her, that what I vowed anyway. It really pissed me off, my mother could look after my daughter, whets the problem, I was worried, the issue had been going on for months. I was worried and annoyed that it took this long to get serious about breathing problems. After rowing on the phone I reluctantly stayed home. Then bang, I get a call, it’s the mother in law. You’d better come over. I was furious all I wanted was to be by her side.
To all the husbands out there if you feel the need to be with your wife at a desperate time, make sure your kids are ok and get right by her side, don’t let anyone tell you otherwise.
I put my daughter to bed, left her with my brother and went to the hospital to be met by two teary eyed ladies my wife and her mum. I was left alone with my wife. From going to A&E with breathing problems the doc found a lump in her breast and 2 litres of fluid on her lung and he said it is probably cancer. The doc was good, great infact. His name is Rob. It’s like a delayed shock reaction. It’s a blur for a day or so. From that point, I phoned my boss and told him I wouldn’t be in for a couple of days, phones my mother and brother and desperately tried to keep it together. I think I was at the hospital for a few hours. I left after they had drained the fluid from my wife’s lung. I am so glad that my brother was at the house. We talked, I can’t really remember what about. I drank a couple of pints of Guinness and went to bed. Up to this point I just managed to hold back the real tears but when I was woken up by the beautiful sound of my nearly one year old daughter couldn’t hold it together. This was the first time I really cried not for me or my wife but for my daughter and the thought that she may lose her mummy. Then I worried about my wife, the drain the night before was tough and I thought about what she may have to go through and then me and our perfect life. To say I was scared would be an understatement. For the next couple of days I tried to be strong but always cried when I said good bye to my wife. At this stage I didn’t know what we were facing and managed to find a way to cope and focus on the small steps to treatment and wellness or at least blank and avoid my fears in order to function in some way.
Up to this point in my life I had it really quite easy and hadn’t really been through any real hardship. My father worked very hard to provide for us and my mother struggled through an early diagnosis of arthritis to care for us. I know I have the values of hard work and determination. My parents did a great job with me but nothing could have prepared me for this. Just when I needed them my parents and my only brother they were not there they had moved to France a few months previous. When you are 28 and you’re desperate to give your dad a hug or you really need to speak to your mum face to face for reassurance because the shit has hit the fan and you can’t, it’s tough. It’s these harsh realities that make you realise how important family is. We aren’t perfect, we have our ups and downs but our love for each other is unconditional and we are close. And what my wife and I have together is amazing. I want to tell you the full love story; I’ll save that for my biography one day. I just really wanted to highlight that the 3 people I wanted or needed for support were not even in the country through the most difficult time of my life. My wife needed me so I couldn’t let it all out on her. My grandparents and Aunt’s family were great but I wanted my Mummy and Daddy. This in a way was good for me. It made me search inside to find the strength, strength I am still looking for. I have had to look deep inside for strength, wisdom and courage. Things are getting easier. This is a rollercoaster and just when you are getting on you will have a bad day. It’s OK! There is help out there, not much for us blokes, but it’s there. I f I managed to find it any one can. Don’t be afraid to admit you need help..........................................
To be continued.

Dad's View

BY DEREK JONES

I’m Joanne’s Dad, and I hope no father has to write what I’m about to write now. When Joanne was first diagnosed with Breast Cancer, she was 24 years old. She had never been ill before. She was lively, bubbly, vivacious, full of fun and a very talented singer and musician. My first reactions were ‘No, it’s a mistake. They’ve made a big mistake. It can’t be true. If this is a joke then it’s not fucking funny. If this is a mistake then I’m going to kill some ba*!#rd for it.’ Then came the anger, smash something, hit somebody, blame someone, anybody. When the disbelief and the anger had passed and rationality had returned, ‘make a plan’. Stay calm for Jo’s sake. Examine all the evidence and results to get a full grasp of the situation. Stand back and be objective. Talk her into just a lumpectomy with some underarm gland removal. Maybe by minimizing the surgery we can minimize the effect. Be positive throughout. Only say positive things to Joanne. Try and be there at every turn. WHY MY DAUGHTER? There is no god, there is no justice, there is no fairness in the world.

Six years later a telephone call ‘Dad! The breast cancer has returned and it’s worse than it was before’. Further to this ‘Dad, I have a secondary incurable bone cancer’. Shock, disbelief, fury, frustration, PAIN. A crushing blow! A weight pressing me down, hurting my head, hurting every cell in my body. I want to fight for her, but how? Hasn’t she suffered enough. Give me the bloody thing, I’ll take it willingly. Leave her alone, please leave her alone. She’s my only daughter, please let her live, she deserves it so much. No God, no justice, no fairness in the world. Please Joanne LIVE, LIVE, LIVE.

BY PAMELA JONES

I’m Joanne’s ‘stepmom’ and have known Jo for 15 years, since she was 16 and I was 21. When I heard that she was diagnosed with breast cancer at the age of 24, it took me back to memories as a teenager when my own mum was diagnosed with breast cancer. Then (in the eighties), cancer treatment wasn’t as effective as it is now, and sadly there was no hope for my mother who died at the age of 42 when I was just 14. However, technology has improved since then and anything is possible. Therefore we always try to stay positive for Jo, and believe that cancer can be beaten.

Secretly every woman must be afraid to end up in Joanne’s position, however for Jo this is not once but twice. Sometimes I think that that could be me! That could be any woman! How frightening is that! Jo shows so much courage and bravery and always has a smile on her face, which I admire. Jo is not only a great step-daughter, but she is also a great friend. My life has been enriched knowing her.