Life Stories

Louise’s Long Journey to Victory

21 November 2016

I heard someone calling my name, but didn’t recognise the voice; I could hear machines whirring and beeping but didn’t recognise what they were; my body ached but I couldn’t figure out why…

Not many people can say they grew up by the beach.  I was very lucky to boast this claim as every weekend between March to November would be spent at the caravan and school holidays would pass by in a sunny swirl of swimming and beach fun and ice-cream with friends.  However, it was also here where my battle began.

In 1992, aged ten, I was having problems walking and kept getting pain in my left leg.  I carried on as usual but the pain in my left knee and leg increased.  After an accidental bump whilst playing my left knee started to swell and we had a manic drive to Banger A&E; department.  After a night of x-rays, examinations and poking and prodding we were told that an appointment had been made for me at the Royal Orthopaedic Hospital in Birmingham … a Cancer specialist hospital.

Mom stayed with me in hospital whilst I underwent tests and a biopsy on my leg.  A week later the doctors told us that I had Osteosarcoma in my leg and knee – in other words I had Cancer.  At my young age I was having to make some important decisions about Chemotherapy, amputations and the possibility of secondary Cancer.

The summer of 1992 was the start of three months of chemotherapy at Royal Orthopaedic Hospital.  It was also the start of constant sickness and the daunting prospect of losing all of my hair.  That September the doctors removed the Cancerous tibia in my left leg and replaced it with a metal bone – I had become bionic!  7th December 1992 was my final day of Chemotherapy, just four days before my 11th birthday – what a present!  No more being sick; finally, I could get up out of bed and get rid of my awful wig which I’d been wearing to hide my bald head.  I was now officially in ‘remission’, getting my life back to normal.  

It was difficult adjusting to my new life.  Learning to walk again with my new metal leg was very strange but a challenge I was going to master.  I had Christmas to look forward to and was going to America in the New Year with MASCOTS (a charity that made a sick child’s dreams come true) so I had all the motivation needed to get back on my feet.  However, by March 1993 I was having breathing problems and was taken back to hospital to get checked out.

I was at Birmingham Children’s Hospital this time.  They discovered I had ‘dilated cardiomyopathy’ – basically an enlarged heart a result of all the chemotherapy I had had for the cancer.  My dream of going to America was over.  I was admitted and started on a cocktail of tablets to help prevent my heart getting worse.  Not only was I trying to recover from the Cancer but to learn of this new setback knocked me for six; from now on I needed to take tablets to help with my heart condition and be a regular visitor to both Royal Orthopaedic Hospital and Birmingham’s Children’s Hospital.  Summer came and went and I finally got back to the caravan.  

Finally, some good news: my dream of going to America wasn’t over; I had been selected to go to Disney World, California in October 1993.  I spent two glorious weeks with 20 other children who were going through illnesses.  It was great to know it wasn’t just me who was battling with their health; it gave me a massive moral boost knowing that there were others just like me.  It was great doing the tour of Universal Studios, Disney World and loads of other places with the doctors and nurses who all looked after me whilst I was sick.

It was now High School for me.  It wasn’t always easy as I stood out and bullies saw this, but my closest friends were always there to look after and support me. 

Back at the beach a new setback was just around the corner.  Whilst out swimming with my sister and friends I felt my left leg give way underneath me in the pool and was swelling up.  We rushed to hospital – I had bent the metal bone in my leg.  Back to the Royal Orthopaedic in Birmingham where I waited for a replacement metal bone to be made.  I couldn’t believe it was possible to bend a metal bone!  It was back to square one after the operation: physio, getting confident on my feet again and hospital appointments to make sure everything was okay.  However, I was determined not to let this get in my way; I was all ready to take my GCSEs and nothing was going to stop me.

In 1998 I left school and went on to an apprenticeship in office administration. In November 1998 my left knee needed an operation but I was back in the New Year.  I loved working at the office and met lots of new people and made new friends.  One very good friend introduced me to Wayne – we started dating in February 1999!

Wayne was always supportive and patient.  In 2002 we took the plunge and moved in together.  We were so happy in our new flat.  Wayne worked shifts and I was finishing off my apprenticeship.  Things couldn’t be better.  

In October 2002 I was rushed to the Manor Hospital.  My speech was slurred and I couldn’t feel my right side.  I had no idea what was happening until the doctor told me that I had suffered a stroke.  Luckily there wasn’t a blood clot on my brain but one from my heart had moved into my chest.  Another spell in hospital where I had to regain use of my right side and get used to walking again.  It took me a long time to get back on my feet but I was determined not to let this get in my way and we celebrated my 21st birthday in style. 

In 2003 I suffered three more strokes between January and May – so I was back into recovery mode to get over them.  Things were tough but Wayne was my rock throughout.  The support and love he gave me was indescribable; he kept me going.

The summer of 2003 was looking positive.  I was over the worst of the strokes, Wayne and I were now engaged and I had found myself a job at a catering company traveling around different businesses working in their kitchens.  One afternoon at work I slipped on a wet floor and instantly knew that trouble was ahead.  Another trip in an ambulance, this time to Birmingham Heartlands Hospital where I was told I had fractured my left femur again.  I could not believe what was happening; why couldn’t I just get on with my life?  I found myself back at my second home, the Royal Orthopaedic Hospital, who told me that not only had I broken my femur but I had yet again damaged the metal bone in my left leg.  The solution was to have a completely new bone made for my entire left leg.  Wayne and I were due to move into our new home together and should have been celebrating, but he was having to cope with the move on his own between work and visits to see me.

Wayne and I tied the knot in April 2006 and set sail on a glorious cruise for our honeymoon.  Just as things were going so well … I suffered a fifth stroke that July.  It was back to recovering the use back in my right side.  My speech was quite badly affected and it took me a long time and rehabilitation to get things back to normal.  My health continued to deteriorate; I was having problems with my breathing and knew something major was wrong.

In October 2009 I found myself in the Queen Elizabeth Hospital in Birmingham undergoing tests to see if I was eligible to go on the heart transplant list; if not I was only given another two years.  I was added to the list and was now playing the waiting game, my hospital bag at the ready by the door.  I cannot even begin to describe the feelings and emotions that went on in our house; one minute we would be talking about the future and then we would remember that I was very sick and might not make it to Christmas.

On 30th December 2009 the fateful call arrived.  We made a mad dash to the Queen Elizabeth Hospital to await the arrival of what could be my brand new heart.  Unfortunately, it was not viable, which was a major blow; I had said my goodbyes to Wayne and my family not knowing how the operation would go – and now I would have to do this again another time. I carried on doing as much as possible but found the most trivial of things a massive task.  Fortunately, I didn’t have to wait long as “the Call” came on 20th January 2010.  Another mad dash in rush hour traffic and prepping for surgery.  By 5 pm the whole day had passed in a blur of tears, hope, anxiety and fear – but then it was all systems go.  I was determined to survive this operation but was also aware of the risks of such major surgery.

I heard someone calling my name, but didn’t recognise the voice; I could hear machines whirring and beeping but didn’t recognise what they were; my body ached but I couldn’t figure out why – until the voice that was calling my name told me that the operation had gone well and I was the proud owner of a healthy working heart.  I came round from the anaesthetic and reality kicked in: I had had my heart transplant!  All I wanted now was to see Wayne and my family to make it seem real.  I couldn’t believe what was happening as I recovered in intensive care.  With every day I got stronger and was determined to get back on my feet and out of hospital.

After three weeks at the Queen Elizabeth Hospital I was allowed home.  My new life meant regular trips to the QE to monitor how I was, which was great as I got to see all of the staff who had been such a support to me.  I have also been able to meet other transplant patients, making some very dear friends along the way.

As I sit here writing my life story so far I cannot help but spare a thought for the individual that gave their life in order for me to continue mine.  There is not a day that goes by when I do not think of this unsung hero.  Without them I cannot even begin to think of where I would be today.  I have been given more than a second chance in life and will continue to battle with everything that fate has in store for me, not just for myself, for my beloved husband and family but also for my guardian angel who has made today possible for me.

The battle began; the fight has taken place; I stand here victorious.

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