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I have acute promyelocytic leukaemia (APL). When I was diagnosed, I couldn’t find that much information about it and I wasn’t able to make contact with anyone else going through it.
Tuesday 12th April 2016:
I was told that I was in remission. I should have been really happy, but instead I burst into tears. The enormity of everything that I had been through hit me.
My nurse told me that these feelings were quite normal and often occurred when patients finished treatment. They also told me they wouldn’t need to see me at the hospital for two months, which seemed such a long time. I felt completely lost. I’d been used to planning my life around my hospital appointments and, in truth, I was very scared.
I immediately panicked about what I would do if something went wrong and I spent the next couple of weeks in a terrible state. I had problems sleeping and I started to worry about everything; I just couldn’t help it. I would wake up and start crying for no reason and it would go on for hours. I couldn’t understand why I was feeling like this when the prognosis was good.
really felt for my partner, Tom, as he didn’t know how to help me. I thought that perhaps a support group would be the answer. I found one locally and went along, but it really wasn’t for me.
I then found out about another group in Oxford, near where I lived. I turned up and was given a really warm welcome by a lady called Claire. However, when she told me I was the only person who had turned up for the group, I burst into tears. She was incredible and sat and listened to me.
She then asked if I would be interested in an appointment with a psychologist, and she managed to get me one the following week. I couldn’t believe it. I was fortunate enough to get six sessions. It was so good to talk to someone who wasn’t directly involved, as I didn’t want to talk to my family or friends about how I was feeling.
As the weeks passed, I was not only feeling stronger, but also more my old self.
Before I got ill, I’d been making silver jewellery in my spare time and would exhibit it at the annual two-week Bucks Open Studios. I thought I might have to miss this year’s, but I actually felt well enough to exhibit with my friend Sarah and ten other artists.
I was a bit apprehensive as I’d lost some of my confidence, and it was the first thing that I’d done that was ordinary. I’d been shut away for a long time; I wasn’t even sure how I’d be dealing with the general public.
Thankfully, it went really well. It was so nice to be doing something that didn’t revolve around cancer. At the end of each day I was totally exhausted, but I looked forward to the next one. I really enjoyed myself.
After the two weeks, I had to rest for seven days. Looking back, I probably wasn’t quite ready to embark on so much activity and I really pushed myself to do it, but it was still a real turning point. I began to see parts of the old me coming back to life and I was so happy I had taken the chance.
Over the summer, I progressed well. I sometimes found it hard to pace myself as I’d feel well some days and forget that I was still in recovery. Then I would pay for it and have to rest for the next few days.
Saturday 5th November 2016:
Before I knew it, the anniversary of my diagnosis was here. I hadn’t thought about it until we got to Halloween and then suddenly all the memories of this time last year came flooding back. I thought about it a lot and realised that, actually, I should feel happy as on the 5th November 2015 my life was saved. Yes, I had to endure a horrible treatment, but ultimately I was still here and not everyone is as lucky as that, so I’m extremely grateful.
So, what’s next? Well, I’m not sure yet. I’m still not quite well enough to look for work. I’m scared about it, but I’ll have to cross that bridge when I come to it. I’m hoping that as time continues to move forward, I’ll feel more confident about finding a job.
Parts of the old me are coming back slowly, but I know things will never go back to the way they were. Inevitably, I have changed. On the one hand, I feel much stronger; if I got through the last year, surely I could get through anything? But, on the other hand, I know that I have lost some confidence with things that I wouldn’t have thought about before. I’ve been on a long and difficult journey over the last 12 months and, at times, I have surprised myself.
My friends and family have been really supportive and I have appreciated every visit and message I’ve been sent. Those who couldn’t physically be with me kept me going with phone calls and messages. My friend Sharon, who lives in Spain, sent me messages on WhatsApp every single day; my friend Susie in Australia would Skype and phone whenever she could; my cousin in Spain would send me photos of the beautiful walks he went on. All these little things meant so much to my recovery.
It’s so important to be surrounded by love. I have met some amazing people with their own stories to tell and they have helped me find my way. I hope that by telling mine, it will help others in a similar situation find their way too. Oh, and I haven’t been put off the Christmas 24 channel. I’ve watched a few films already this year, and they still make me smile.