Patient Case Study: From 1986 to Today: Ross’s Journey with Leukaemia
From 1986 to Today: A Survivor's Journey with Acute Lymphoblastic Leukaemia
Young patient Thomas Ashley has been detailing his blood cancer journey and battle against Acute Myeloid Leukaemia (AML) following his diagnosis aged just fifteen as part of an online blog in association with Cure Leukaemia, and we bring you the latest edition that details his life post-treatment:
I didn’t know or want to admit what was happening, but I was crumbling. Piece by piece and they were no longer crumbs. I was sinking quicker than I ever had before and I didn’t know how to stop. I didn’t know what to do. I was getting bad and it was getting bad. By December 2018, even friends could start to see that I was heading to a dark place. I carried on writing during this time in different spurts, as it was my only way to get it out my head. I couldn’t speak to anyone so I had to find a way to voice what was going on in my head and that was writing.
I wasn’t there for you, was I? When you needed me the most, I wasn’t there. I was too busy thinking about myself. Too busy being the selfish cunt I am.
You were always there for me. From the day I was born to your very last. You didn’t stop thinking about me. Never. You went through thick and thin with me. And you were there every step of the way. You never had to come up to see me. But you always did. You were always that bundle of joy which could always make someone’s day. Specifically, mine.
But now I’m so lost. I can’t come to terms that I will never see you again. Hear you again. Just nothing… again.
I’m so angry. So, f***ing angry. Of all the people, why you? Why did it have to be you? What does anyone have to do to deserve this?
I miss you. Nothing is the same without you. I’m dreading Christmas. It’s supposed to be the best time of the year but that’s because you’re there. I don’t know Christmas without you. I don’t know life without you. I don’t know anything without you.
I’m struggling. I really am struggling. Every day is the same. Just pain. When does it stop? When does life actually get better? Because all life is, is waiting for the next bad thing to happen and the one after that. For years I’ve been told life gets better, but how long can that last for?
There is one certainty in life; death. That’s what stood out for me at your burial. That one saying. I don’t know why. Why do I keep going back to it?
I’ve been to your house more times in the last month than I did for the past 3,4,5 years. And I don’t even have a good excuse why I didn’t visit. I just took it for granted that I thought you would always be here. Always be able to call you, to see you. But I was wrong.
I just can’t do it anymore. All this pain and suffering. It hurts. I don’t know for how much longer I can continue to be positive. Every day at the moment, is a struggle. To get out of bed, to shower, to cook, to get out, to go to my acting classes. I’m not living life anymore. I am just getting dragged along by it.
I always thought that you’d be around the longest. Out of any grandparent. Even my mum thought that.
I don’t think I ever truly told you how much you mean to me. Because it’s the f***ing world. The f***ing galaxy. The f***ing universe! Words can’t describe it. It will do you an injustice.
04/12/2018
As I had mentioned, my time in London and acting was something I thought I wanted, but it wasn’t. It’s what I thought I needed but I was wrong. As per usual, I was running away from the problem and it was catching up with me… quick. The hardest part; I didn’t know what I needed. I wasn’t doing well and it was showing. I was missing a lot of classes because I just couldn’t do it. But I also didn’t want to leave my room because I was scared of showing people what was going on. That I was going to break down any minute. And that wasn’t who I was. I couldn’t face giving in to what was happening. I didn’t want to admit it because then I would be surrendering to defeat.
At the time I couldn’t see that and in February 2019, I had the urge to write what I had been through, just like now. But I really struggled because there was so much. So much I just didn’t know. This was all I could write at the time. Just raw pain and anger and resentment. I had no other way of expressing it other than trying to tell people, trying to tell myself what I had been through. I was 19, trying to circumnavigate life with added baggage, all alone, not knowing how I ‘should’ feel.
This is very similar to my first blog when I was diagnosed, just how I wrote it at the time with emotions I didn’t understand. So, feel free to skip over this next bit. However, I do believe it is important to share as it’s all part of the journey.
Do you know how hard it was? How hard it still is? So, f***ing hard! And do you know how much it f*** with you, being told you have cancer, not once but twice.
When they tell you the first time it’s the worst thing anyone can hear. But when you’re told the second time, that one really f**s you up. Knowing the pain of the first time and how hard and cruel and f***ing horrible it is, mentally and physically. To know you have to do it all again.
Just when you think that life can’t get much worse. You think you’ve been through the worst part of your life. The depression, wanting give up and out of nowhere your world is flipped upside down… again.
Both times I was told I will remember forever. It’s something I’ll never be able to not to. Whether its good or bad. It’s something that will stick with me. And I remember both times clearly.
The first time I was diagnosed, it was just after 2014 Xmas. Went back to school for a couple weeks when I started to get a sore throat. Turned out to be ‘tonsillitis’. Went to the doctor, got the usual medication and took a week off of school. The next week, my ’tonsillitis’ had gone but I felt quite ill. I tried to play football on the Sunday but after 30 seconds after kick off I nearly threw up so I came off. Thought it was just side effects of the medication so took another week off. The following week I go back to school, on the Monday. I had games, so it gets to the afternoon and try and play all I can and push myself. I’m exhausted at the end. I get off the bus at my stop and walk home. When I get in, I literally collapse because I am so tired. My mum realises something is wrong and calls the doctors for a ‘check-up’. I go the next day for a blood test and in the evening, the doctor calls saying I can’t go back to school till after half term (which was 3 weeks away). I carry on going for blood tests every other day.
My mum does start to worry more each day but I was oblivious to it all. I just thought I was ‘ill’. The next Monday I have a blood test. 7 in the evening the doctor calls saying I have to go straight to the hospital. I was shocked and confused why. Anyway, we get to Coventry hospital and go into A&E. We wait about an hour and then go through to have a blood test. I remember, the nurse took my mum out the room to have word with her. I didn’t know what it was the nurse needed to tell her. My mum comes back into the small room and tells me what she said… she told me that it could possibly be cancer. This was hard to stomach. I pretty much instantly broke down. From just being ‘ill’ to possibly having cancer! When your first told about it as well, you can only think and imagine the worst. Anyway, they take me through to a ward, where I’m given my own room. It’s quite late at night now.
They eventually come in at 1ish in the morning saying that the specialist blood doctor isn’t in so can’t quite tell what it is but the doctor which has looked at it says it looks like glandular fever. To this day I don’t know if they said that so my last night before my world is changed forever, can be in peace and without worry. However, they tell me to come in at 11am the next day to give me my full diagnosis.
I go in with my mum at 11am and end top just sitting there for a while. I had a mix of emotions going through my head. I still didn’t know I had cancer and still had hope that it was just me being ill. However, 2pm comes up and two nurses come into my room. They close the door, sit down with my mum and I. I remember they got straight to it and told me there and then; ‘you have cancer’. I didn’t react, I was blank. I just sat there, going along with it, trying to process it. My mum broke down straight away. Floods of tears. I can’t imagine what went through her mind. To hear your son has cancer.
The nurses reassure my mum and I that its curable. There are lots of different treatments, whatever leukaemia it is. At this time, my brother and sister are at school, my older sister is at university and my dad is in Spain. My mum doesn’t really know what to do. She goes out the room to make phone calls to my dad, my granny and my aunty. My mum and brother had had a chat a few nights back, and my mum told him that it could be cancer. So, when my mum called him, he knew straight away. My dad knew he needed to get home so got a flight home as soon as possible.
My Aunty Jane came up from South Wales. She met me in the hospital with my brother and sister. I didn’t really know what I was going to have to do that night but my Mum knew she was going to stay with me. My Aunty took my brother and sister home that night. I was then told that I needed to go to Birmingham’s Children’s Hospital that night but it depended whether a bed on TCT became available. A couple hours later (6pm or so) I was told I can go over. It’s really a mix of emotions going on inside me at that moment of time. But then it wasn’t. It was just blank. I just didn’t know anything. My mum drives us over to Birmingham Children’s hospital and I get taken to the ward. I have all checks done as you do. Then I’m just on the ward with my mum, whose calling people and letting people know. Just surreal.
I knew I had cancer at this point but they didn’t know what type. On the Wednesday I go down for a bone marrow aspirate. At this point I’m getting more and more ill by the day. On the Thursday, they take myself, my dad and mum into a room and tell us the full diagnosis. It was Acute Myeloid leukaemia. They tell me the course of treatment needed to defeat it etc. I remember telling my mum on the Monday that I hope I don’t have to stay overnight because I hate it. The course of treatment meant I would have to stay in hospital for pretty much six months. I left the room with a nurse and whilst the doctor spoke to my parents more just about everything else and extra support. I was still coming to terms with it at this point. Still not really knowing and it was just… hard.
The next day I go to the Women’s Hospital to do a sperm bank because the chemo can make you infertile. I was really ill though. I went over there (it was really weird, a separate story) and did what needed to be done. I then needed a Hickman line put in. It goes into my chest, then just under my skin, up to my neck and into my main artery leading to the heart. This is because if I had the chemo through my arm, it would burn it off. I then woke up on the Saturday and started the chemo.
There is a lot more to this story which I will continue to add to over time. A lot more detail to go into in every aspect. SO much more to tell. This is just a start.
Being in hospital is another story on its own. When I come out of hospital is another story on its own. Year 11 is another story on its own. Year 12 is another story on its own. How I got diagnosed again is another story on its own. Being in Hospital again is another story on its own. Year 13 is another story on its own.
I haven’t included too much detail of the emotion in any of it. My physical state and details of what I went through is a different story altogether to what I am feeling and why I am feeling that and not understanding that etc. which do link together.
There is so much more to say which I will say one day.
