Your child’s first day at school is an incredibly special day and something you never forget. For Pete, he waved Joshua goodbye on his first day of school then went to continue his difficult and emotional journey at the Christie, and the third round of his chemotherapy treatment.
In April 2011, Pete aged 30 was diagnosed with osteosarcoma of the left femur. Pete’s treatment involved chemotherapy, which included Methotrexate. Pete’s determination has been centred on his family, Kate his wife and 3 children Joshua, Lilli-Grace and Annabelle.
In his own words Pete has kindly shared why he’s focused on where he wants to be and not where he’s been...
In 2007, I fell over and shattered the inside of my bone causing metabolic bone disease to occur called osseous fibrous dysplasia, which is benign but in rare circumstances can turn cancerous. I underwent treatment and a bone scrape. It looked as though all was improving and in 2009 Kate and I had Lilli-Grace, I returned to work and ran the Manchester 10K but over the coming years my condition deteriorated.
In 2011, I had my femur removed, which lead to the diagnosis of osteosarcoma.
I was driving through Manchester with my wife, after being shopping and I received a call from my surgeon Professor Grimer at Birmingham and he informed me I had osteosarcoma and that I would need to go to the Christie the following week.
It completely floored me, no one likes hearing the words ‘you’ve got cancer’ or that it is a high grade one and that it is in your bone. It gutted us as a family, but I had to put my thinking head on and start processing. I was given a 20% chance of survival without chemotherapy, this increased to 60% with chemotherapy – it was a no brainer!
Everything moved very quickly and the following week a hickman line was put in and I had a PET scan, an MRI and started my chemotherapy treatment on a MAP regime, consisting of Cisplatin, Doxorubicin and Methotrexate.
Once I started treatment I couldn’t play with Joshua or Lilli-Grace, I was very tired. Lilli-Grace would sit on me so I couldn't move. When I came home from hospital she would deliberately fall asleep on me so I couldn’t go anywhere. It’s had a massive effect on Joshua, he had behavioural problems and some speech problems, he still has a stammer now.
I became headstrong wanting to know every last little detail of my treatment. I had to know what, where, how, why and everything in between. Knowing the exact timings of treatment so I could be home with the children at the weekend, this was my only time with them. It was critical, I was in Tuesday morning and had to be out Friday night.
Cisplatin and Doxorubicin wasn’t so much of an issue as it was timed bags but the Methotrexate needed the rescue and sodium bicarb to bring Ph. levels up. Otherwise such high doses could cause you to go into toxic shock, which could kill you within an hour.
So, on my first day of treatment I wrote out a whole regime and put everything in order in a folder so anyone could pick it up and see exactly what the regime was and what I should be having and when so I could be home for the weekend. I had amazing nurses at the Christie, who talked me through chemo and sat with me whilst having chemo. The nurses would chase blood tests to allow me to go home with rescue tablets to manage the Methotrexate. They knew how important it was for me to be in and get home to my family.
After my first dose I had severe sepsis, the second dose I had to have a blood transfusion, third dose I had to have platelet and a blood transfusion and then I got an infection. I also developed oral thrush, which was horrific, I could barely open my mouth to put a straw in, my mouth was covered with ulcers, all over my tongue, and down my throat. It caused terrible reflux and I had to take lots of indigestion remedy, which also helped with the mouth ulcers. It also caused severe constipation. I had so much pain going to the toilet.
The MAP regime is the most gruelling, debilitating, sickness inducing, awful regime you could possibly imagine. It is horrid.
From the moment it goes in, it made me feel sick. The anti-sickness medication didn’t work or stop the feeling. Methotrexate takes it out of you, it is the worst type of fatigue you will ever feel. I also lost all of my hair, I was bald head to toe including nose hair. However my skin looked great, smooth soft skin, this was the only positive.
I was so exhausted, I couldn’t open my open eyes, your mind says one thing but body says another. I felt like I had swum oceans, ridden across land and done marathon upon marathon, your body just feels beaten. It’s truly horrible, I lost 4 stone in weight.
But I had to move, I had to keep going, I had to get in to the mindset where it won’t beat me, it did just keep coming at me. It felt like everything was working against me, all you want to do is shut your eyes and sleep but if I did that I didn’t know if I would wake up again as it completely and utterly takes it out of you.
At one point my Haemoglobin levels reached 2 or 3, they normally have to be between 13 and 17 and I was taken to the Christie, I was told I shouldn’t have been walking, I shouldn’t be able to stand and I was given three bags of blood to bring my levels back up. I would slip in and out of consciousness and wake up with a crowd around me.
My chemo treatment was for 8 months and finished on the 12th January 2012. 2 months later I had my acetabulum (socket of the hip bone) replaced. It didn't work because I had so many operations in the same site, leaving my muscles weak and I had lots of scar tissue.
My wife, Kate and I were asked if we wanted any treatment to preserve my fertility in case we wanted anymore children. We already had children and felt very blessed so thought if it was going to happen, it would. And something amazing did happen in 2014, Annabelle was born, it was such a great surprise!
For the next few years I carried on as best as possible with a stick and crutches but my leg never did get strong enough for me to trust it. In 2017, I was playing with Joshua in the garden, throwing a ball and my leg went from underneath me and I just thought ‘I can’t do this’ so I made the decision to have an amputation.
I had to be assessed at an ability centre, and visit a counsellor and pain clinic before I could have the amputation. I just wanted to play with my kids in the back garden without fear of falling or hurting myself.
Since the amputation I’ve got my life back. It has been a long long slog of recovery from chemotherapy and I had 10 operations in total, I still don’t think I am fully over it, but I can play with my 3 wonderful children on the floor or in the back garden.
My memory is still affected, it’s nothing like it used to be. I really need to concentrate for things to sink in, I can have a conversation then 10 minutes later forget I had it. My energy levels are nowhere near what they used to be. I suppose it becomes daily life and you just adapt yourself so you don’t see it all the time.
My wife Kate has been amazing and we’ve had friends and lots of family support us. Kate made it as normal as possible for everyone. She never let me know how much it was affecting her. We made the most of the days when we could go out together. She’s amazing
My diagnosis also affected us in other ways it would ruin plans and stop us from going out. We couldn’t go to the pub and see friends it killed off any social life. We didn’t do anything for so long until the amputation.
I have found my own interests. I have learnt to ride a motorbike, as it gave me something to concentrate on away from the routine of treatment. It’s been like my time, I didn’t have to think about treatment, hospital appointments, nothing apart from being on the bike. It was a massive help. I don’t think I would have been as positive if hadn’t done something to help cope. It gave me escapism!
Do something that makes you feel human, rather than a patient. Do something you’ve always wanted to do that allows you to escape from it all.
If new treatment developments could be made by the Bone Cancer Research Trust and it alleviates just one symptom it will mean the world to patients. The treatment needs to affect just the tumour and not every cell in the body. I saw it as hitting a reset button putting my body back into factory reset. Destroying everything for it to rebuild.
I think the work the Bone Cancer Research Trust does, funding research and incredible people who want to find new ways to treat, reduce side effects and increase longevity of life is incredible. I feel proud to have been in the hands of a medical team that is so directly linked with the Bone Cancer Research Trust.
I don’t know of anyone who has had the treatment I have had and been treated so well through the journey. The Bone Cancer Research Trust's impact on surgeons and their way of thinking comes shining through. Just having someone to talk to that listens, I’ve never poured my heart out to someone before like I have to the Bone Cancer Research Trust, it’s incredible. Joining the team at the 2018 British Sarcoma Group Conference was amazing, loved it!