I'll start by taking you back to 1979. This is before my life with cancer started, but I believe it might be relevant.
I had been to school and was going to my parents' shop for lunch, as I did every day. This day, towards the end of my 10-minute walk from school, I was met by my elder sister. I knew instantly something was wrong.
She told me that dad had collapsed earlier that morning, had a massive heart attack, and died. One of those where he was dead before he hit the floor. It was quite a shock for 15 year old me (in fact a shock for anyone), but I do believe this might have been the start of what was going to come.
Let me take you forward to 1981. I was attending Burnley College in East Lancashire. I walked three or so miles to college every day. One day, in May 1981, I noticed a pain in my left calf. It ached, it was sore, but nothing that worried me. I walked every day on it, but the pain was increasing.
My sisters were both senior nurses (they are slightly older than me!) and we put heat lamps and creams on it and thought nothing more about it. They told me:
You've got growing pains, or you've done too much sport and pulled something.
My sister, who lived in Warton near Carnforth, suggested a good walk up Warton Crag would help. It didn't! The trigger point was not only the swelling on my calf, but the fact that my toes had gone numb. None of this was helped by three knocks on the area of the calf and a cut that had appeared. Kicked during a rugby match, hit by a squash ball, scratched whilst doing an eskimo role from a canoe... yes, I was very active once.
It was decided in June 1981 that I go to the GP. Unlike those today who are in a similar situation, this all moved very quickly. I think my sisters' connections to the NHS helped, and my elder sister worked in a theatre with orthopaedic surgeons.
The GP didn't like what he saw, the numb toes were a big indicator, and I was sent for an x-ray at the local hospital.
As I sat waiting for confirmation that the x-rays were okay, I was hearing: Mr. Smith, go back to your GP in a week. Mrs. Jones, go back to your GP in a week. Mr. Ashworth, could you go to your GP this afternoon. Alarm bells started to go off.
Well, long story short, the GP said I needed to go to the hospital. I think I was in before the end of the week for a biopsy. The results all came back after a couple of days, whilst I stayed in hospital, and the diagnosis was sarcoma — something they referred to as osteosarcoma.
It meant nothing to me as a 16 year old, in hospital on an adult mixed ward, as they were back then... think Carry on Matron, for those of an age.
A charge nurse, Ricky, ruled the roost and there was no lying on the bed or crossing feet and lots of other rules... sorry, I digress.
The decision was made, I don't even remember being part of it, that the best thing was to amputate. That it was going to have to be above-the-knee amputation to ensure no cancer cells were left. Did I understand what was going on? At the time sarcoma, amputation, cells were not everyday words to a teenager.
It was quite a while later that I realised I had cancer.
My fellow older male patients all thought I'd heard wrong. That a young lad could not be having his leg removed. They were mainly there with twisted knees and broken legs. It was true though and, despite Mr. Garragty' s (the butcher opposite me) disbelief, the day came.
It was actually the day before my 17th birthday, in July 1981, that they amputated. I don't remember much on my feelings, I think I just got on with it... maybe I blocked it out. That was it, my leg was gone, and I was back in bed.
The next day Ricky, who I mentioned above, was over to tell me that I was sitting around in bed, and I needed to get up.
This was the first time I saw my stump and I was not in a good place.
Going with the flow, head spinning and wheeled into a patients' room. This was the day when smoking on the ward was allowed, and I was left by myself in a smoke-filled room... the irony when I look back.
The only other things I can remember back then was the planning about some drugs I needed, and leg fittings, which would be done in Manchester. Oh yes, there was the moment of the drain removal. An odd experience at the best of times, the most painful experience of my life when they had stitched it in. Who knew I could scream so loud?!
I was sent to The Christie in Manchester for my chemotherapy - methotrexate - the lovely yellow liquid that you watch drip, drip, drip.
Radiotherapy adds a whole new level to the experience and did give me my only tattoo (okay, they put a dot on me to line me up with the radiotherapy machine in the same place each time, and the dot remains to date).
For context at the time, I know I'm digressing again, the thing I remember the most from this is Botham's Ashes in 1981. Okay, go and search it, but the time the radiographer was a cricket fan and had the radio on.
My only other memories from the time were being one of the oldest children at The Christie, in the days before 'teenage spaces' were invented and patients were smoking in the corridors between their appointments.
This was also the age of no information on cancer, no leaflets, no discussions, poor explanations (no-ones fault, they just weren't used to talking to teenagers) and no counselling. Obviously pre-internet.
The months went by, treatment finished, and the monthly chest x-rays started.
I got my first pylon leg (a very basic, flat facing prosthetic that they start you on). Most of the limb fitters were war veterans and had artificial legs themselves.
It is amazing to see how limbs have changed over the years, from wood to metal to carbon and computerised knees.
Technology has been fantastic, but it still comes down to a good fitting socket. Over the years, the way I walked, and my gait occasionally bothered me, but now it is comfort and I'm doing as much as I can. Social media and the Paralympics have opened up the world of artificial limbs to a wider audience and people stare less... most of the time.
We jump forward to 1982 and I'm getting ready for my A-Levels. The chest x-ray comes back with some shadows.
The shadows are metastasis, small ball bearing sized lumps in my lungs (the place that osteosarcoma likes to run and hide). There were lots of these small lumps to be removed. Their concern was that some were so small they couldn't see them. They planned on doing their best and I had a bi-lateral thoracotomy.
Two large cuts down my back from my shoulder to my waist area. Throw in some more chemo and radiotherapy, patch me up and back to do my exams. I did pass... just! They removed all they could, but were not convinced they got them all.
Right, back to life's more mundane activities for a late teenager, getting ready for drink and parties. I didn't have a great 17th birthday, 18th wasn't much either, but I got on with things. Tried university (three times) and a few temporary jobs, everything was falling into place. Obviously challenges with the leg, but I was active and positive.
1985 came around, and my 21st birthday was on the horizon. I was all clear for a number of years and on six monthly check-ups at the hospital. Then, one day, I did one of everyone's normal daily activities in the smallest room in the house and had a wee. Wee should not be red and slightly gloopy (sorry if you are eating). I passed a lot of blood and that was not normal. I had no pain or symptoms before this point.
Back to my GP and on to the hospital, the same process I had become familiar with.
This time, they found a lump in my left kidney, and no surprise it was cancer. Apparently it was very swollen, and they thought it had been growing for a long time. The only option was to remove the kidney and another scar down my stomach area. I tell people that I'm a walking dot-to-dot, and you can join all the scars up to make a lovely picture.
My next operation was carried out at Burnley General Hospital. The song 19 by Paul Hardcastle was released and for some reason this is a memory for me sat in the hospital around April 1985.
Music brings back so many memories for me, especially on this journey.
An operation leads to chemotherapy. The doctors wanted to try around 10 doses of a chemo cocktail to put an end to this. They have no idea if the kidney cancer was there at the same time as the lung metastasis. I'm apparently unique, and I'm being discussed at various cancer conferences around the UK and worldwide.
Now, a different reaction to the chemo. I was three treatments in and at home. I'm hot and cold, sweaty, up and down, and just can't settle. After a day or two, I'm taken back into hospital in Manchester, Wythenshawe or Withington... it doesn't really matter to you, the reader, or the story. Long story short, the chemo has killed all my red and white blood cells. Because of this, a blood transfusion was needed.
Discussions were going on (not with me) and doctors decided to stop chemo as it was killing me. My body had reached the limits of its tolerance. Fortunately, my head hadn't and for whatever reason I knew I had to get home, and I wasn't going to die in Manchester (nothing against Manchester, I love it as a city).
Whilst the rest of the world was watching Freddie Mercury and Queen work a Wembley crowd, and David Bowie and Mick Jagger are Dancing in the Streets, I tell my poor mum to order a taxi from Manchester to Burnley.
I discharged myself from the hospital. I wasn't planning on dying on the hospital bed. On 13th July 1985, the day of Live Aid, I go home. Who really knows what was going through my head and what was happening to my body. Maybe it was positive thinking, maybe just lucky, but I was able to have a happy ending. A life that so many others haven't been able to have, and from time to time that does still resonate with me. I often ask myself 'why?'.
I am a statistic of around 160 people diagnosed in the UK with osteosarcoma each year. Three people out of every million. 160 is still too many and we must raise the profile of this cancer and how it impacts our lives and our families. The stats are against me, but I am happy to be an exception in the survive and thrive category, who is able to give back by sharing my story.
Surviving and thriving is a challenge, but better than the alternative. Over the years I've also had a benign para-thyroid gland removed (another scare across my neck). I've also had a heart attack, a stent put in six years ago and, shortly after, sepsis. I've had most things thrown at me.
I have said that dying is easy, it is the living that's hard.
As I reach 43 years since my first diagnosis this July, I often reflect on life. I can get upset in my private world and I think I've used up most of my cat's lives. Getting older just brings the age thing into my life and factor in the 60% more energy I need to function each day. I can be a glass half empty with the simple everyday tasks and challenges, but always half full when it comes to the more serious things in life.
No offence intended, but would I change anything? My answer is no! I hate cancer, it affects too many people, and it is a horrible thing to go through. But it has made me who I am and put me on the road I'm on.
I have three amazing children, who are all finding their ways in life, and I love them all. I also have a good job as a tax specialist. The cancer and my disabilities have not stopped me doing things in work, but I wish I was braver to have done more things outside of work. I am a food and a restaurant judge, and food is my passion. The world of food has given me so many opportunities. I also have a weekly radio show on a local station to share my love of talking and music.
I couldn't finish without mentioning one other person (I have tears as I type). Jane, my best friend, rock, special person and proud to say my wife. Without her I would not be here and without her my life is nothing. She gets me through every day. She lives with my moods (yes, I do have ups and downs, despite everyone knowing the happy, smiley Steve), but I do everything for her and I love her more than I can ever put into words.
All of us who are here today at various stages of life have their family behind them, and it is they who have the hardest challenge. Jane, thank you for making my life with you so special.
Thank you for taking the time to read this. I hope it gives you, the reader, some focus and hope. There are positives out there, in a difficult and challenging world that the Big C brings. I know the pain that cancer does bring and leave many, but together we can make a difference.
So much has changed since my diagnosis in 1981, but a lot is just the same now as then and this needs to improve. I wish that the Bone Cancer Research Trust was around in 1981, as their support and resources are making a real difference.
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