Beginning of October, 2015
I started noticing bruising on my legs but I didn’t really pay much attention to it. I thought I’d probably bumped into something without realising. Then towards the end of the month I got another bruise, this time the size of my hand, on my left arm. I had no explanation for it. I racked my brains but couldn’t think how on earth it had happened. My mother had had a low platelet count, so I convinced myself that perhaps I had the same thing.
Monday 26th October, 2015
I tried to make an appointment with my GP online. The next appointment wasn’t available until November 23rd which seemed ludicrous. The next day I called the surgery and the confirmed that that was the first available date. I told the receptionist that I didn’t feel very comfortable waiting that long. She asked me if it was urgent (But how was I supposed to know, that’s what I wanted to find out!). I said I had no idea, but that waiting three weeks didn’t sit well. Instead, I was given a telephone appointment in a week’s time.
Monday 2nd November, 2015
I finally got to speak to my GP and made sure I mentioned my mother’s condition. Thankfully she agreed I should have an appointment for a blood test as soon as possible. She managed to get me one a few days later.
Thursday 5th November, 2015
In order to make the appointment, I had agreed with my boss that I would work from home. I had the blood test first thing. At about 6:30pm I was just shutting down my laptop when the house phone rang. It was the doctors’ surgery. They explained they had found an abnormal film on my blood results and they wanted me to go to my local A&E for further tests. I had a strange feeling I might be a while so I picked up my glasses and my phone charger. At A&E I went through triage and then they said that the consultant would come and see me as soon as possible. The consultant arrived and confirmed my diagnosis. I don’t really remember much of the conversation but I heard the word leukaemia and suddenly everything stopped. My heart started beating really fast and I felt like I couldn’t breathe. All I could think was, this is it, my number’s up! I didn’t know very much about leukaemia and I certainly had no idea that there were different types. But then I heard the word treatable. That’s all I really remember about that conversation. The consultant said they would need to do further tests to confirm which type of leukaemia I had but, in the meantime, I had to be admitted that night as treatment needed to start straight away.
Friday 6th November, 2015
After some blood was taken, I was told that my levels were dangerously low and that I would need a blood transfusion. I had no idea what that meant and that’s when reality properly hit. I was told that had I not been admitted I could have just collapsed and died. It didn’t feel possible. I had felt fine that very morning. All I had had was a bruise and now, all of a sudden, I was on deaths door. I had two blood transfusions that night and was put on 15-minute observations. The next morning I had to have bone marrow removed from my lower back so that it could be sent off for analysis. It was very unpleasant. I was so tired as I hadn’t slept and I remember feeling very numb.
This first round of chemo was given every other day for five days. I was scared but at the same time I knew it was something that needed to happen if I was to get through all this.
Saturday 7th November, 2015
My first day of chemo. I was taken to a ward and put in an isolation room. Although they still had not received the confirmation of which type of leukaemia I had I was told they needed to make a start on trying to get me into remission. I’d heard about chemo but I had no idea what it was or how it was even administered. I received mine manually; it was a red liquid given by injection which took the nurse about 15 minutes each time. It didn’t hurt. The liquid just felt really cold going into my veins which was a bit weird. This first round of chemo was given every other day for five days. I was scared but at the same time I knew it was something that needed to happen if I was to get through all this. I was sick one day but it really wasn’t as bad as I had feared.
Monday 9th November, 2015
The consultant confirmed I had acute promyelocytic leukaemia (APL) which is a blood cancer that affects the blood-producing cells in the bone marrow. He said it was a rare and aggressive leukaemia but a treatable one and that the prognosis was really good. Although the chemo itself didn’t affect me too much, I did suffer badly with tiredness. It was like nothing I’d ever experienced. I remember texting a friend one minute and the next thing I knew I was waking up. I’d fallen asleep half way through!
For me though, the side-effects were worse than the chemo. I suffered with terrible mouth ulcers. They were so incredibly painful that I couldn’t eat. Ironically, the week before I was diagnosed I had signed up to Slimming World. The nurses kept trying to make me eat but I couldn’t. After a few weeks I was threatened with a feeding tube. I decided that this was not going to happen. I sat and patiently mashed a digestive biscuit and mixed it with a yogurt. It took me nearly two hours to eat it, but I did it in the end.
I ended up staying in hospital for five and a half weeks. I had access to a channel called Christmas 24 and over the course of my treatment, I watched nearly every film that was on. The nurses laughed at me but I didn’t’ mind, I watched them because every film had a happy ending. I didn’t want to see anything that was going to make me sad. I knew I needed to stay positive. I made the choice early on to tell all of my friends. I knew I was going to be in hospital for several weeks and I wanted to ensure that I had as much support as possible. I was very lucky that I had visitors nearly every day, sometimes even twice a day. It was lovely as it meant I could talk about something else other than my illness.
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.
25th December, 2015
I managed to make it home for Christmas. My partner Tom and I had a lovely quiet one even though it wasn’t quite the celebration that we had expected. I was pleased to get out of hospital but I was a little scared too as I’d been used to having a medical team on hand. And, because I was in familiar surroundings, I kept forgetting I was ill until I tried to do normal things and found that I was too weak. One day I was a little cold so I tried to go upstairs and get a cardigan but as I reached the stairs my legs gave way and I had to go up on all fours.
My hair didn’t fall out immediately. It’s always been long so I was worried about how I would react to this when the time came. When it did start I had a dream in which my late mother was telling me to prepare for the next stage and cut my hair. When I woke in the morning I felt really reassured by this. I phoned a hairdresser friend and asked her if she’d come and cut it into a short bob. I actually didn’t lose my hair until I had my third round of chemo. By then I knew it was inevitable so I didn’t feel too bad about looking like a little alien with my bald head. I just kept looking at myself thinking how strange I looked. In the end, I decided to wear a wig. Even though I was poorly on the inside, I didn’t want to look like I was on the outside. It wasn’t that I didn’t want people to know I had cancer, but I wanted it to be my choice. I hated my first wig but then, my friend Clare offered to go wig shopping with me. I found a company called Banbury Postiche Ltd who were absolutely brilliant. I walked away with a new look I wouldn’t have had the confidence to choose on my own but I really liked it. At first I didn’t look like me but I did feel good when I was wearing it.
Friday 29th January, 2016
I went in for a routine clinic appointment. I wasn’t feeling particularly well and ended up being admitted to hospital straight way. I was neutropenic (which meant I had a low level of white blood cells and couldn’t fight off infections). I ended up staying in hospital for two and a half weeks. I remember really struggling as I had been doing so well. It was a bit of shock feeling so poorly again and I was feeling really exhausted and teary. The nursing staff were wonderful and, if they saw that I was upset, they would sit with me for a while.
Monday 29th February, 2016
I had my last chemo session. Hoorah!
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 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.
Recovery and getting life back on track
I 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 at Maggie’s Centre and was given a really warm welcome by a lady called Claire but when she told me I was the only person who had turned up for the group I burst in to tears. She was incredible and sat and listened to me. She then asked if I would be interested in an appointment with a psychologist. 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 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 really well. I sometimes found it hard to pace myself as I’d feel really 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.
I have met some amazing people with their own story 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.
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. I know that 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 can get through the last year, surely I can get through anything. But on the other hand I know that I have lost some confidence with things that I would 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 story 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.