Tom de Young

When Tom began to notice concerning symptoms, he contacted his GP and was immediately given a blood test. But upon further investigations at the hospital, Tom was initially misdiagnosed until his results were checked again, a decision that would save his life. Tom now shares his Spot Leukaemia story.

It took me four to six weeks to realise that the symptoms could potentially be serious. Initially I started noticing some bruising, which I put down to being quite active. I was playing football, running and also doing some work around the house regularly, so I’d put it down to those kinds of things. Tiredness also wasn’t new to us; we had a six-month-old baby who wasn’t too keen on sleep herself so I was getting minimal sleep as it was, making it easy to cover up those tired spells. My colleagues at work would joke about me telling them how tired I was all the time. My bruising was also highlighted a lot to me as I was wearing shorts at work and a few colleagues suggested I get them looked at. However, one evening while out for some food with my mates, one of them pointed out a massive bruise on my elbow and I really couldn’t explain it, which is why the next day I acted by calling my GP surgery.

On reflection, I’d taken the odd photo on my phone of funny bruises a while before, and looking back at photos it appears they were there a little longer than I realised. I also had some strange spots that appeared on the insides of my arms that looked very similar to freckles. Again I decided it was just a reaction to something I’d been doing, later discovering that these were typical of leukaemia!

My initial phone call with the GP surgery was fantastic and I was advised to get some urgent bloods. Working in a GP surgery myself, I was able to take advantage and get this done even quicker.

On Thursday, after more tests at AMU at Torbay and an overnight stay, I was advised first that I had a condition with low platelets which could be treated with medication and I was going to be discharged that morning. Only when my bloods were looked at by someone else were they able to confirm my actual diagnosis.

On Friday, I was taken to a “quiet” room by my then consultant-to-be with an army of nurses who were clearly going to be present when I was told the life-changing news. I was still none the wiser as I had just been told I was to be discharged routinely shortly! Added into the mix, the night before was a blue light arrival of my six-month-old little girl to A&E, who was admitted for breathing difficulties. So, I was in in-patients in a ward, but also my little girl and partner were being seen in the children’s ward.

After I was told the life changing news that I had acute myeloid leukaemia (AML), I then had to decide how best to tell my loved ones. I had not long got off the phone to my partner Jacqui, who thought I was being discharged that day! I waited until I knew she would be at home and not driving and I asked her to start packing me a bag, revealing my diagnosis as the team wanted me to start my chemotherapy the very next day. To this day it was the hardest phone call I’ve ever made in my life.

I then had to tell my parents (something no one should ever have to do). My parents were actually at a funeral very close to the hospital and I text my mum asking them to come and visit me. They suggested they would go home and get changed first but my reply was “no, you need to come now” – which is when my mum knew something was serious.

When everyone arrived, we were in a room and my consultant was able to explain to everyone my diagnosis again and the next steps in my treatment. Throughout all of this I had one of the nurses present who little I knew would become such a massive part of my journey (Fran) who I recently nominated for a special recognition award.

Initially I was told I would need my bone marrow biopsy now and treatment the next day. My consultant disappeared and came back and said he had had a change of heart and would allow me to go home for the weekend and treatment could commence the next week after topping me up with “a bag of platelets”. I had no clue what the hell platelets were, never mind how the hell they would help; little did I know my life would rely on them so much!

I was able to “enjoy” (if that’s the right word) time with my family over that weekend, which included a BBQ and some special times with my little girl. I was petrified that it might be the final time I saw a lot of people. The brave face continued as we all agreed to my one rule of “no tears in front of Brooke” (my little girl’s name). Her daddy was about to embark on the hardest journey of his life, and I didn’t want her to know any pain I was in or anyone else around me. Luckily, she was young enough to understand nothing.
The following week (Monday) I was given the opportunity to visit a local hospital and freeze some sperm in case the treatment affected that side of things. That was an experience! I’d just been told I had cancer and now I had to provide a semen sample with the aid of Heart Devon on the radio and some magazines from the 1970s. No detail needed here!

Bone marrow biopsy. Wow. What pain that was… I had two before I decided to give the gas and air a try. I think I’ve had four or five in total now at the end of various treatments to confirm no cells present.

My treatment was due to start on the Wednesday, but we decided I would check into my room on the Tuesday and stay the night to get used to my surroundings. I took some personal things in with me. Little did I know I wouldn’t be leaving for six weeks!
I opted into a clinical trial as I believed, even if it didn’t help me, it would help people in years to come. I then had my PICC line inserted. I’m petrified of needles and the thought of having a wire inserted into my body scared the hell out of me, but I knew it was essential for my journey.

Treatment started. Initially I wondered what the big deal was all about. I was able to receive treatment and sit and watch the football with my dad—what was the big deal? I found out the effects of the treatment are the big issues throughout.

After my first round of chemo I was hoping to get home, but I unfortunately found myself with a rather serious heart infection which meant I needed to have IV antibiotics every two hours. This was confirmed by me having a camera down my throat and also several ECGs and scans on my heart. I also found myself with sepsis which was a very scary time for me and my family. I genuinely feared going to sleep in case I didn’t wake up. I was unable to move, my body hurt, I had what felt like cramp in my calves for two days and I cried and cried.
Every visit from the ward rounds I would cling on to the hope that they would let me go home. Every time they said it wasn’t safe for me and every time I cried; I was so desperate to have a break and see my partner and daughter at home instead of in my hospital bed. At the time I was so gutted, but I know they had my interests at heart.

Jacqui would visit in the mornings and my parents would visit in the afternoons. My sister would visit late, which often came at the times I was being given my chemo. Most days chemo wouldn’t finish until 1 or 2am, but Grace, my sister, would sit with me until the end. She would also keep me topped up with takeaways and other unhealthy gifts. I weighed 90kg before treatment; I was down as low as 68kg due to the treatment and lack of appetite. No one can ever prepare you for the mouth sores or appetite loss. Some days I would barely eat a banana and the nurses would constantly try and encourage me to eat. Without sounding ungrateful, hospital food after a couple of weeks was really not appealing.

Round two was eventually able to take place, which is when my hair really started to fall out. I embraced it! Each day to me was a step closer to eventually getting home and recovering.

After round two we had Brooke’s christening arranged, which was very important for me to attend. There was a small chance I would be commencing round three which could have meant I wouldn’t be able to attend my own daughter’s christening. Luckily, I was able to. My local football team arranged a fundraising walk too which meant a lot! They all walked a small section of the local Templar Way walk and we all met at the clubhouse at the end where I was able to attend and see a lot of people for the very first time.

It was decided, due to my slow recovery rate in blood levels, that I would not be able to receive chemo rounds three and four. To this day my blood levels still haven’t recovered to normal, but I continue to make progress. I have been able to return to work full-time and continue to step up my efforts to one day play for my football team again. I was very active before all of this!

I then visited the day unit every day until the days were able to spread out. I received numerous bags of blood and platelets until the end of November! My mum would take me every time and we made some great friends with some of the staff who I was seeing every day.

From day one I decided to write a blog about my journey. I decided it would be a good way of informing people of how I was getting on. Little did I know the impact it would have. Some days I was unable to write a blog and my partner would receive messages asking if I was okay! I received various messages of support from some famous people. Video messages from footballers (mainly from ex Rangers football players who I follow) and some TV stars (DIY SOS), the most exciting one being from Steven Gerrard offering me complimentary tickets to a match when I was fully recovered (an offer I’m still yet to take up!). These really lifted me on my darker days!

However, the after-effects mentally are very hard to process. I am currently seeing a psychologist to help me overcome some of my darker days, but I am so glad I have engaged in these services.

Raising awareness is so important, pushing people to get these things sorted if worried. My workplace is covered in Leukaemia Care syringe pens and various colleagues are wearing the Spot Leukaemia badges on their lanyards. If it starts a conversation with someone about the disease, in my opinion, that’s one step closer to improving knowledge.

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