When I was starting to get worried

After the London 2012 Olympics, I retired from being a full-time athlete in the GB rowing team and became the assistant coach for the Oxford University Women’s Boat Club. In my third year of coaching I started to notice that I would get mouth ulcers for months at a time. I was prone to getting mouth ulcers when I was an athlete, more when I was run down or when I was nervous/stressed about a competition, but they would normally tend to go after a couple of weeks. At this point I had had them for about 6 months, so the Oxford Women’s team doctor suggested I went to see my GP.

My diagnosis

Luckily my GP referred me to a mouth specialist where I got prescribed some tablets for my mouth ulcers and had some bloods taken just to check. As it happened, the mouth specialist was a little concerned about my platelets being too low. I then went on to have further bloods and then was told I should have a bone marrow biopsy. At this point I started to get a little nervous, especially as my auntie has had leukaemia. The doctor warned me that the biopsy would be quite painful. Luckily, I saw an amazing doctor at the Royal Berks and I wasn’t too nervous as I was used to having back injections from my rowing career! It wasn’t painful at all just a little uncomfortable and it felt very odd. After my biopsy I was told that I had Aplastic Anaemia and PNH. At this point I did what any normal person would do… I googled both of the disorders. That was a big mistake! I didn’t really know what to make of it all.

Closing in on treatment

I was referred to a bone marrow specialist at the Churchill in Oxford and had to see a PNH specialist in Leeds. After having several check-ups and blood tests over time we noticed that my bloods were deteriorating, and I was feeling more tired and started to have less energy to train. To me this was the worst bit, from going from being a full-time Olympic athlete to someone that was getting out of breath on a jog was really upsetting. After more appointments and chats with specialists, we were trying to decide what the best plan of action would be if my bloods were going to keep deteriorating. I was told to get my sisters to see if they would be a bone marrow match - at the time both of them were pregnant which would mean that they couldn’t be a donor for some time. But luckily my big sister Beth was a match. This was pretty cool, as I was told that there was only a small chance that either of my sisters would be a match. At this point there was talk of me having to have a bone marrow transplant which was really scary.

After speaking to the PNH specialist and the bone marrow specialist we decided that ATG treatment and cyclosporine might be the best plan of action. In the end the decision about when I should start the treatment was left to me, which in itself is a bit scary! I decided I wanted to kick Aplastic Anaemia’s butt as soon as possible! I was also very aware that I wanted to start my PGCE the following year and if I had a chance of doing that, the sooner I started the treatment the better. Being married and 32 I was also aware that at some point soon I would like to start to think about having children and I know that it was not advised to do so until I came off all of my treatment.

Treatment day!

The big day came! In April 2016 I went into the Churchill to have my ATG and cyclosporine treatment. I was told that there were a few side-effects but felt that from the research I had done and been told about that this would be a good option. I had to be in hospital for 5 days where I would be attached to a line that would allow the ATG to get into my system. The nurses at the Churchill were all so lovely and made me feel so at home and I had my own room which was great. Each day I had to have about 10 hours of treatment. Unfortunately, my line would get clogged quite a lot, so I got a bit sleep deprived. On day 3 I started to get a real hot flush, so when the milkshake and lolly pop lady came around on the ward I took two ice lollies to go!

Each day I had to take quite a few tablets as my immune system was getting a bit zapped from the ATG. I also had my bloods taken each day just to keep an eye on them. The ATG treatment is used to zap your immune system in the hope it reboots itself (well I think that’s the easiest way for me to understand it). On day 5 I was ready to go home. Throughout my time at the hospital I had put on 8kgs of fluid!! I felt a bit pooped from lack of sleep but apart from that I was feeling ok. During my time at hospital I had lots of lovely visitors. My Mum and Dad took it in turns to visit and my husband visited every day – even though he was trialling for the Rio Olympics! I felt bad about that, but I don’t think anyone would have kept him away.

On one of the days my mum brought my niece in, so we had a colouring in session with my new posh colouring in book. I also had an iPad with Now Tv on which was a godsend, especially when my line would get blocked and keep beeping, so I couldn’t sleep. On my last day my sister visited with my new baby niece which was amazing. Although when we went for a walk to get a hot chocolate I had to sit down because I thought I was going to pass out! That afternoon I was allowed to go home.

Going home!

It was so lovely to get outside into the fresh air. Being at home was where I felt worst though. I was quite dizzy and fainted a few times which was a bit scary, and had a horrible migraine, but after the first day I did start to feel more normal. The fainting carried on for a little longer, but I think I just needed to take it a little easier. We had to go back into hospital to have my line cleaned and to have more blood tests where I found out that my platelets were a bit on the low side, so I had to have a platelet transfusion. How cool is that! I am so grateful for blood donors!! After that trip to the hospital I had to check in every week to have my line cleaned and my bloods taken. I was lucky that my family and friends took me to the hospital as I couldn’t drive at the time. After being off school (where I coached and taught some art lessons) for the most of Easter (3 weeks) I was allowed back I think after a month. I still had to go back for regular check-ups but my bloods slowly started to get better which was very exciting!

Back to normality

While I was back at school lots of people were asking about how I was feeling and I had to explain to them about what aplastic anaemia was. I was so eager to get back and do some training, so I slowly started to get back into a bit of jogging which made me feel so much better! I then decided with my husband that it would be a really cool idea to give me a goal. The following April after my treatment, so in April 2017 we decided to enter the Reading Half Marathon. I asked loads of my friends to get involved because I thought it would be a good idea to race for aplastic anaemia. So about 10 of us ran including family and friends and we managed to raise about £5,000! Everyone was so supportive, and I feel like we may have helped put aplastic anaemia on the map. My husband then went on to run the London Marathon and raised a further £1,000, so in total we raised £6,000! In February 2018 I was allowed to come off my cyclosporine which was so exciting! And since then my bloods started to actually get a bit better especially my haemoglobin which I have really noticed while exercising. I feel so grateful for the ongoing help I have had from specialist doctors and nurses, as well as my very supportive family and friends. I am currently still teaching and coaching at Queen Anne’s School in Reading and I am in my final year of doing my NQT – so I am almost a qualified teacher! I am hoping that I will be able to start thinking of having children soon too. This time last year I was doing the Reading Half Marathon and the year before I was in hospital having my treatment. What a couple of years! But I have learnt so much and what doesn’t kill you makes you stronger! :)