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Standing alone on a beach. Waves rolling in, out of reach, Changing the shape of shifting sands, Just like life, with the turn of a hand. One moment still like a piece of glass, Then small ripples, but they soon pass, Winds of change bring the breakers, Crashing down, each one a taker. Taking what you recognise, sand you know, Changing it, moving it and so it grows, Like a new, beach one unfamiliar, You search all around - nothing is similar. At first you can stand, upright and strong, Unbending, unwavering,and sturdy for so long, Never giving up against the ever increasing bluster, That rages and batters you with all it can muster. Then one day the storm moves away, You're left on the beach - another new day. Everything's changed, it's all moved on, Things that you knew have now all gone. Just as you adjust to your new surroundings, A breeze across the sea comes abounding. Gently moving and silently building, Across the sea, seeking and finding. Pushing the breakers you already know, Towards you again, how fast they seem to grow. This time there's fear that they might swamp you, Taking you under, holding you there, Squeezing every breath from the inside out, Stealing your life and still you can't shout. All above you the storm rages on. Pushing the beach where it took you from, Everything's cold, everything's black, All you can do is pray you'll come back. You know in your heart that the storms pass Leaving behind them a brand new path, One you will tread with anxious care, Taking each step, moving on if you dare. One day you will stand on a beach, The sea like glass and out of reach. Sparkling with diamonds from the sun, Enjoy the moment for it could soon be gone. Every now and then the storm clouds will gather Dark and threatening the glass will shatter Then from the deep the breakers will rise And if you let them they will be your demise. Crashing down on the beach that you know, Grabbing at your ankles around you they flow Twisiting turning moving the sand, Knocking you off balance if they can. That is when you hold on to your faith, Reach out, say your prayers; you're not too late God will hold on to you - not let you go You have to believe this, you have to know. He is the rock that never moves, You can hold on, but you have to choose. No storm or breakers will ever Him move Even if hope fades and light becomes dim. So take that thought and hold it tight. In those dark storms God is your light, They will become easier.....and Your feet will stay firm in the shifting sand, With many thanks to Jane Samuel. VHLCG member. KARIN...MY LIFE WITH VHL. I am the youngest of four children. As we were growing up I noticed how lucky we were to have good health. None of us went to the doctors or had a stay in hospital - except Steven who had appendicitis. Mum had VHL - but none of us knew it. She was born in 1937 and was one of eight children. Three of her brothers had renal difficulties and Mum had lost her left eye around the time I was born. VHL was scarcely known about in the 1960's and things were put down to cancer. In 1977 I was thirteen. I remember I visited the optician. My eyes were always very tired and we imagined that I needed glasses. The optician spoke to my Mum in hushed voices and seemed interested in her eye history. The conclusion was that my sight was perfect. There was something at the back of my eye which was unusual but nothing to worry about. We went back to being a healthy family for three years. I left school at sixteen. My life was just beginning. I had got a start date for my first job - 11th August 1980 - but that day, instead of settling in to my office desk, I was arranging my things in a bedside cabinet ... in the Manchester Royal Eye Hospital. A few days before that, I had visited an optician because the sight in my left eye was wobbly and a little blurred. Before I knew it I had been fast tracked via my own GP into the emergency clinic at the hospital. VHL was diagnosed and all our lives changed from then on. From that first hospital stay I learned that I had VHL, as did my Mum and three of my uncles. Despite intensive laser treatment, I lost the sight in that eye and later the eye itself. As well as that I had become someone new. The next few years featured more VHL presentations. In 1981 my oldest brother was diagnosed with a cerebral tumour and cyst. It caused him severe pain and health problems for many months. He visited numerous clinics at hospitals and GP surgeries, but was told that he was stressed out, to take pain killers, and ultimately to stop bothering them! Eventually they took him seriously and a scan showed his cyst to be the size of an orange. We nearly lost him. He had a post-operative blood clot, causing a severe stroke. He was in hospital for three months. At that time he was aged twenty four. What happened to him has always affected me. It was hard to see my big brother, a soldier, prankster and a magnet for the ladies, unable to speak or walk. We all had to play a part in rebuilding his life ... teaching him to walk again, eat with dignity, be John again ... but of course he did ninety per cent of the work. In 1986 my other brother had been diagnosed - for now with neurological presentations. I had lost my eye and needed two more operations to stabilise my right eye, and one of our three uncles had died from a brain haemorrhage. Even so it seemed to be manageable I thought. When I was eighteen my mother told me I would make 'a suitable case to be sterilised'. They were cold words ... very shocking. I wasn't really prepared for that. As a young women the choice of having children was just there. The doctors told me endlessly that because I was diagnosed and aware of the symptoms, to look for life could be managed pretty well. I thought that in another fifteen years things may be more medically advanced and having children would not be a problem. I wanted to keep my options open for now. I told myself that VHL would not rule my life ... I was in charge. In 1986 things stepped up a gear. I got a phone call at work, one day in August, from Mum. Although we noticed she was losing weight, she had been hiding the change in her general health from us. Having plucked up courage to see the GP, she was told that she had renal problems and had to go into hospital straight away. The memory of the medical history of her brothers and the realisation of the VHL connection had hit her hard. She was crying and terrified. I felt helpless. Hearing your Mum sobbing like a baby is not easy to take. Mum had both kidneys removed and went on to dialysis. It was too late. A malignant tumour had developed and the cancer spread. She died five months later aged forty nine. By now, medical teams were taking VHL seriously. All four children were put on regular screening. To me it seemed that someone had to die to make even doctors understand how dangerous VHL can be. After all we looked healthy! Clothes or hair covered our scars; we had all our limbs; we didn't struggle to breathe or take special medication; and, to add to the frustration, it was rare to find anybody, even consultants, who had ever heard of VHL. When I told friends and work colleagues, they did not appreciate the seriousness of VHL. A period of time in hospital, to cut out the growth, and months of chemo and radiation therapy seemed to them a minor inconvenience. One day I went to visit my GP to talk about the choice as to whether contraception was best for me. I was given an appointment in a group practice with a Catholic doctor. I explained that I had VHL and had been told that it was not wise to take the 'Pill'. I gave him details of my family history and asked for advice. He said 'I am a Catholic and, as such, do not give contraceptive advice'. I was shocked and embarrassed, especially as he had a student with him. He followed it up by saying 'so there's nothing wrong with you then...goodbye'. I saw a second GP who said, having looked me up and down, 'You'd be best off with condoms'. I received no professional advice from those I believed I could trust. There was no discussion and possible options were not explored. I know I was wrong, but at that stage I gave up. I felt very confused. I knew VHL could cause blindness, and tumours in various organs of the body, and that there was a fifty percent chance of it being passed on to any children ... but here were medical men telling me there was nothing wrong with me. Perhaps it wasn't that bad. Perhaps I had just been given the worse scenario and life would just be full of clinic appointments. But it had killed; and would go on killing. I felt stupid too. I had no one outside the family to talk to. I knew no one else who was going through what I was going through. No one understood, listened. or empathised. I felt isolated. The years between 1986 and 2004 had been challenging in every sense of the word. John had presented with renal failure and more cerebral cysts. My other brother had renal and spinal tumours and I had cerebral, renal and spinal tumours ... and I had lost my sight completely. I also had a baby in 1994. I had to wait five years before a blood test for VHL could be done on her. Five years of holding her, playing with her, loving her, wondering if the gene had been passed on. Every day I rehearsed what I would say to her if she was positive; imagining how it would change her life, how my beautiful little girl would be terrified on the inside ...l ike me and my brothers living from on scan to another. But she was clear. I could not believe it. For nearly 25 years I have lived with hospitals, doctors, scans, tests, injections, operations and disability. I know what I need to know about VHL. My brothers and I are living case studies. I manage to put VHL somewhere in the back of my mind until three weeks either side of the scans. Then I become tense and my mind fills with images of bad news, operations, more scars and a reduction of the quality of my life, maybe even death. Today my brother is waiting to go on dialysis, having had his kidney removed; my other brother is in a wheelchair due to the chronic pain caused by multiple spinal tumours and many operations surrounding his kidney transplant. I am aware that the next scan could change my life drastically. It seems that the net is closing in. The most painful image that I carry is that of an old photograph. In it four small children - all grouped in ill-fitting pyjamas; their faces rosy cheeked, and eyes filled with innocence. They are healthy and happy and full of dreams and promise. Then I flash to a photograph taken thirty years later, when the four are grouped again. This time three of them are thin, almost boney. Under their clothes they carry scars and their veins are thin from the over-use of injections. Their dreams and lives are restricted. But, whatever VHL brings to us, I am still determined that VHL is not me ... just a part of me. Finally, I would like to thank Mr. Lavin, opthalmic surgeon, for being the only doctor - the only one in twenty five years - for saying 'you have a horrible disease. VHL is horrible' When he said that to me a couple of years ago, when no more could be done to save my sight, it felt like he had stepped through the patient /doctor barrier and spoken TO ME; almost as if he had been putting on 'tough', to help me through the endless torture of operations, treatments, hopes and fears.
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