I got diagnosed with aplastic anaemia in February 2021 and in my case it was a very quick process, from becoming unwell, having all the tests, being diagnosed and then admitted into hospital for treatment.  

Getting the call

It all happened in a space of three to four weeks, therefore I didn’t have much time to process it all. I remember it was a Thursday and I had a phone call from a transplant nurse in Cardiff (I live in Carmarthenshire) who told me to pack my bags as I’m being admitted on the upcoming Monday to Cardiff hospital for a minimum of three weeks, but it could be more. I knew this would be coming at some point but not so soon. I'm used to being in hospitals, as I work in one, but this time I was going to be on the other side of things. I remember feeling very nervous! 

In the end I ended up being admitted for a full three weeks. The first week was difficult because there wasn’t much happening. The doctor wanted to do a lot of extra tests to determine that I was going to be receiving the correct treatment and I also came out in a rash all over which he thought was very unusual, so he wanted to investigate that too. I kept positive and I tried too hard not to think about home, because I knew I still had a long way to go! 

Starting treatment

My second week admitted, I finally started my ATG treatment which meant I knew I was in for that next full week and then potentially another two because of the risk of serum sickness! Once the treatment had finished, I felt well in myself which then meant I really started to miss home.  

I’m not one to suffer with my mental health normally but being admitted into hospital for two and a half weeks (at this point), one thing I learnt was that it really can take a big toll on your mental health. During these times also with Covid, most wards don’t allow visitors which really is awful especially for the long stay patients. I was lucky enough to be on the Teenage Cancer Trust unit who did allow only one visitor for two hours a day which really helped me!

Some patients have to stay in hospital for months for different reasons and I think it is so important to have a good staff and support system, otherwise patients really could deteriorate with their mental health. For me it wasn’t as bad because I made sure I took enough things with me to the hospital to keep myself busy if I did ever get bored or felt 'down'. But I do now understand how the older generation especially, get confused or depressed, especially if they sit there and just wait all day doing nothing.  

To top it off feeling isolated in hospital when I was in I had to be barrier nursed in my own side room because of the ATG treatment. While being in this room the door had to be kept closed and the windows were sealed shut - I couldn’t even open them for fresh air. This was difficult and I could only walk around my room which wasn’t massive. The nurses were brilliant and whenever they could they’d come keep me company but I know how busy they get, so I understood they couldn’t do it all the time.  

Keeping active

The last thing I found difficult and really did bring my down slightly was how much strength I lost while being in hospital. I’m normally a very active individual, being a nurse, I’m used to being on my feet all day. I also like to go to the gym and go walking, all of which I couldn’t do while being in hospital.

By the third week I realised how much of my strength I had lost. I did minimal work with the physio which included standing and lifting one leg at a time and half squats and I had to sit down because I nearly fainted! This did then give me the motivation to get up more in the day time and walk about to gain my leg strength back. I also started using a little peddle bike to get my legs moving while sitting down.  

 

The main thing to remember here, as I always get told, is to keep positive!

It may be hard at the time especially being away from home but we all have to remember – it’s a marathon, not a sprint, it will all come together slowly.