Lily, Simon's mother, shares his story
Simon complained of pain in his hip - we thought it was the golf (a sport he had just taken up) or the martial arts at uni when the instructor slammed him to the floor (how he got the blame!!).
The visit to the GP and painkillers eventually x-ray which didn't show anything and in hindsight it was the wrong area. Then in September 1999 I was diagnosed with breast cancer and Simon battled on with his pain, not complaining. We sent him to Bupa to see a sports injury consultant who injected Simon in the thigh with steroids this was very painful and achieved nothing, physio followed and a second steroid injection, a chance shopping trip to cheer me up, and he was seen by his physio, he was limping badly by now, resulted in his advice to ask for a scan. Sitting outside that day, nurses started to be nice to me, the first warning bell. The consultant at Bupa told Simon it could be bad or really bad. This was 6/8 months since it started. Simon was referred to Prof Harper at Leicester Royal Infirmary, the scan picture was horrendous the tumour area seem to be his entire thigh.
After that it was just a series of bad news and worse news and the day Simon was told it was malignant and he smiled thinking that was the good one (benign), was a cruel one. It was Ewing sarcoma; I had never heard of it.
Simon's treatment was long, long and hard; chemo, radio, limb sparing surgery (9 hours) allograph, dislocations, dislocations, dislocations, change allograph for metal, full body plaster, months in hospital but throughout Simon remained positive, comical, loving, energetic, joining a gym, building up his upper body, he was in great shape when he wasn't in crap shape with the treatment, our main worry at that time seem to be keeping the hip joint in the socket. He was fed up with his Mum saying steady and careful. He even managed to keep up with Uni work from his hospital bed with the aid of his trusty laptop, he was great at computing, curiously he (as far as I know) did not delve into the internet to find information, which probably allowed his mind to concentrate on that word 'curable'. He started his own Web design company called Krypton-IT with his mate, taking the name from Superman. Ironic really, as Simon left us on the same day that Christopher Reeve (superman) died.
Hope is the only thing that gives you the strength to get through this; it should never be diminished.
Simon was changing, nature had already bestowed on him a quick wit, sense of humour and an ability to mix with all sorts, now his own predicament bestowed on him a gift of compassion, because he suffered he was aware of other suffering. He changed from boy to man before our eyes.
The first reccurrence was I suppose 12/18 months later; more chemo, skin grafts,more reccurrence, more surgery, more grafts, infections round the metal rod in Simon's leg and we became a little hospital at home, inventive, sourced a vac machine to control the infections. Another lump, biopsy, bad.
Thursday Clinic: Friday hind quarter amputation: how I can even write that is a miracle. Still Simon survived it and you will never walk out of this hospital he was told, stuff that, he did. He had one day at home walking with his sticks before being paralysed from chest down and a tumour on the spine.
Down to the theatre again; joking with the surgeon, the entire medical team took him into the theatre, again he survived and the tumour was removed and some feeling came back to his leg.
He got engaged to his girlfriend before the last surgery, she slept in his room on a camp bed and he was never left by himself again.
By this time we were told that Simon was terminal and he was planning his wedding and his life with his Gemma. A brain tumour next and more in his abdomen. They said to us that he should come home. He demanded more chemo more treatment, the Prof agreed if he was strong enough - this gave him hope and he came home.
I actually feel Simon was blessed to have had the tumour where it was in his brain it had destroyed the part of the brain that must control fear and some emotions because Simon could believe he would make it , enjoy the very little abilities he was left with and make the best of it. Give us his family loads of hugs and kisses, jokes and very special memories.
Simon came home in May 2004; I think he was expected only to have days. Simon knew better. Between a marvellous partner Gemma, his Sister Claire and her partner James, Dad Michael and me his still heartbroken Mum we managed to make the last months really really special. Simon with the help of palliative radio and steroids and a ton of tablets, enjoyed fishing his top hobby (on the lake his Dad built for him) photography and computing still mending and building a couple of PCs, and especially cooking (thanks to the steroids) his appetite was enormous whoa betide anyone who nicked one of his cookies!!! We became inventive again with wheelchair adaptations, managing two rounds of chemo, but we never allowed him to be away from us again, we nursed him at home.
I gloss over the heartbreaking times in the last months, it certainly wasn't easy, pain free or pretty but we managed, we made some sort of life out of the madness.
Simon was still eating, joking and loving up to the last night, he wasn't always happy, comfortable or free from pain but the cancer was never more than the man. He died with his family close by and Gemma, me and his Dad holding his hands. It was 10th October 2004 and Simon was 24 years old.
We are still and always will be heartbroken. The nicest thing Simon said to me his Mum was that I was his second best friend; his love Gemma was his first. What a gift to leave me. I know that I cannot see my son by my side, I cannot hold him, but the love I felt for him is embedded in my soul, runs through my veins and inhabits every breath I take.