I felt tired, but other than that, nothing. I have had quite bad health most of my adult life, so I am in and out of the doctors a few times per year. I just put the tiredness down to working too much as I run my own business. I popped into the doctors for my blood test (every few months) to check my iron levels.
My GP told me to go to hospital the following day – I knew what hospital and what ward I was heading to. My GP is absolutely amazing and has been very supportive throughout the past year.
So, I arrived at the hospital, headed to the second floor and walked through the doors. I was surrounded by posters that were all about cancer and effects of chemo, support groups, give blood, wig makers, etc. I felt ill with fear, and I had no clue what I was going into.
I sat down and one of the nurses came up to me and said, “Are you here for chemo today?”
I said, “I have no idea why I’m here.” And ran away into the toilet and had a panic attack. I was meant to see a consultant first. I then went in and they said there was a 99% chance I had chronic myeloid leukaemia (CML).
Sitting in the consultant’s room with my mum, dad and husband, I was in my own little world. I heard a few words and could see the consultant’s mouth moving but nothing coming out. I just heard the words “cancer” and “leukaemia”. A million questions were going through my head: what’s going to happen to me? What will my life be like? Am I going to die? How long will I live? Can I have children?
It’s so strange all these things go through your head that you have never thought of before. I was looking around at my mum and dad and they were asking questions; my husband was just in a daze. It wasn’t nice to see the fear in their eyes.
I’m such a happy, bubbly, positive person and I snapped myself out of the daze and said, “What’s next?” completely interrupting the consultant. He said the next step was to do a bone marrow biopsy and he could get me in next week. I asked if I could just have it done today. I was then taken into another room and had my back injected to make it numb to do the biopsy. Then it began; it was a horrible pressure pain and I was crying. But the song from The Greatest Showman ‘This Is Me’ was playing in the background and I focussed on that – I feel it’s now became my theme song!
I was back in the hospital on the Friday. I was told the results were back and I had CML. Everything was going to change. Again, I tried not to let all the thoughts come into my head and I asked to start the treatment straight away; I was not waiting around. Off to the pharmacy I went and collected all my pills. I then went back to work the following week – this was not stopping me.
The first generation of the TKIs were awful, I couldn’t get through a full day, I could only get up and about for an hour or two at a time. I was sick, weak, bone pain, muscle pain. It was horrible! I’ve never cried so much. I lost so much weight, I was so weak I could hardly use a knife and fork. I tried to keep going with work, but it was all too much. I had to cut my hours right down. I have never felt like this in my life, it got me really down for a while. But my inner warrior was not going to let that happen for long. I tried to power through. I was then taken off these tablets and moved onto another generation. I am still on them now, but I was covered from head to toe in a rash, and my bones in my legs were so sore and weak they felt like they were going to snap.
Fast forward to today. I have had my “cancerversary” one year living with cancer. Every day is still a struggle and some days are worse than others. I’m getting there. Cancer will just have to get used to living with me because I am in no way going to let it beat me. I’m still smiling and not stopping.
My blood levels are steadily going down which is great. I have not hit my target yet, but everything is moving in the right direction. I try to keep doing everything I would normally do weekly but just a bit slower and sometimes it’s quite difficult.
I try to carry on as normal as possible, but this is my new normal! I try to pop make-up on and look a bit more like myself.
I have heard a few times that if you’re going to have cancer, this is the best one to have. Really? Did you actually just say that to me? Nobody will know how it feels unless they are going through it.
Some other cancers you have to go through the horrible process of being injected with chemo, losing your hair and being weak, but when you come out the other side of it that can be you “fixed”. Whereas with me I will have to be on tablets for life. It’s very different.
I’ve also had, “Is that you cured now?”, because I’ve done my hair and make-up and managed to get out in high heels for an hour. Just because I look ok doesn’t mean I feel it. I try not to talk about it too much, so when someone asks me how I am I always say I’m good! I’m not going to go into detail with them by saying, “Oh, today’s been a bit hard, it took me two hours to get out of bed and I needed help getting out of the shower today as my legs went into a cramp.”
But these are things I have daily and I just carry on with a smile on my face as I’m so lucky to be able to have this treatment. And hopefully, in time, these will all ease off.
I have kept working as much as I can all the way through, as having my own business, if I don’t work, I don’t get paid. I have also made up my own hashtag #mycmljourneydiary online as I felt it’s good to keep a wee diary to look back on. Also, if someone is going through the same thing as me and if I can help in any way at all, that will make me feel good that I can help. It’s got the good, the bad and the ugly. All “keeping it real” posts.
Spot Leukaemia is so important to raise awareness as I had no idea what leukaemia really was until I had it!