Sunday, 21 April 2013

The C word

Aim for my blog:
My life completely changed when I was told I had cancer. Everyone is afraid to mention or talk about it but I feel it needs to be spoke about a lot more. Before I was diagnosed with cancer there was a lot I didn't know about and wish I had more of an idea at the time.
 My aim is to share my story and make people aware of the effects of cancer. I also want to share my experience of having cancer with others as I know how worrying and scary it is when you are first diagnosed.  I have a very positive mind and this has helped me a lot through my journey so I would love to share that positivity to make someones cancer journey a little better.

Always smiling x

My Journey so far...
I was diagnosed with AML (Acute Myeloid Leukaemia) on 23rd May 2012. My instant thought was OMG i'm going to die! I never had anything wrong with me before so thought I was fit as a fiddle.
 It all started in April 2012 when I started to feel really tired and down...I also had problems with my gums, I suffered a lot with ulcers and abscesses. I visited my dentist and he explained that it was continuous infections and put me on a course of antibiotics. This went on for a month or so and It wasn't until one day after a night out with the girls, I realised my gum had started to turn black and looked bruised. URUGHHHHH!
 I returned to the dentist and he sent me to a hygienist, she cleaned my gums and they didn't stop bleeding for 2 days. In this time my glands had swollen a lot and my mum insisted me book an appointment to see my doctor. She implied that I had glandular fever and told to return the next day for a blood test. I was worried about having glandular fever as my friend Kath was very ill with it. 

I had the blood test taken and my doctor phoned me that evening saying 
' I'm afraid we have worse news, you will need to get to the hospital straight away.  Would you like to know over the phone? Obviously I said yes and she replied we think you have Leukaemia'
I was so shocked and didn't take in the information properly and passed the phone to my mum casually saying 'ohh Mum it's the doctors, they think I have Leukaemia.' My mum thought I had said it wrong and got it mixed with anemia. 

 From then my life changed forever.
I packed a overnight bag, little did I know this would be my home for the next 8 months. Me, mum and dad drove up to the hospital, luckily we only live 5 minute drive away from our local hospital so we were there in no time. When we arrived I was taken into a hospital room with a bed and lots of doctors came in and told us they didn't know how aggressive the leukaemia was and that I would not be going home for a long while..when they said long I wasn't expecting months! I was told that I would need to have chemotherapy, my hair would fall out and I could possibly lose my fertility. At that point it was still a blur to me and everyone including myself were crying and still in shock. I had so many things running through my mind. 
what was chemotherapy? would I die? why me? how did i get this? what am i going to tell my friends? 
The doctors told me that my cancer was treatable and they have treated it in the past they were just unsure how high risk the cancer was. They told me that I would need three rounds of chemotherapy to clear the cancer. (That wasn't quite the case.) 

I started my first round of chemotherapy after 2 days in hospital. It made me feel horribly sick but luckily anti sick drugs worked wonders. I had lots of thoughts running through my head and one I could not stop thinking about was that my hair was going to fall out. I said to mum 'if I'm going to loose my hair, I want it cut really short first so it wouldn't be such a huge shock from going really long hair to being completely bald.'
Here is a photo of my lovely blonde locks.
 I actually had cancer when this photo was taken and didn't have a clue!
Luckily my hairdresser is also my best friends sister so she came in and cut my hair for me. At first I hated it as i thought it looked really stupid but looking back I think this was because I never cut my hair short. I didn't let it bother me too much.
Having chemotherapy meant that my immune system would be dampened and I was prone to catching infections. This meant I had to stay in an isolated room with a constant pressure fan, the reason for the pressure van was to destroy that any germs that came into my room by keeping the air circulating. Unfortunately this meant I could only have 4 chosen visitors that were allowed to enter my room, these special chosen four were my Mum, Nan, Dad and best friend Kate. The one thing I found hard was that I didn't have a toilet in my room and had to use a commode to go to the toilet. This was the worst part of my journey, being a 19 year old and having to use a commode to go to the loo and not having any shower facilities. I tried hard to stay positive throughout and didn't let it bother me too much. I was lucky to be allowed home for a week at a time between treatment and I spent a lot of this time with friends and family.
Family meals 
First cuddles with my Niece 
Fun with my Girls 
 I responded to the first round of chemotherapy really well and went into remission after ....this was amazing news. I was allowed home for a few weeks to let my counts recover (blood, white cells etc). Unfortunately a bombshell was dropped when I had a routine blood test and I was told that my chemotherapy wasn't as successful as they thought and the evil cancer fought it's little way back into my blood! This confirmed that I had an aggressive form of cancer. The consultants and doctors then had to think of another treatment plan for me. They came to the conclusion that having a stem cell transplant was the best option for me. It was a huge shock as me and my family were told transplant was the last option for treatment and at the time of my diagnosis my consultant said that there was a rare chance I would need one.
 I  thought that anyone could be my transplant donor but it wasn't that easy. 
When looking for a stem cell donor firstly your siblings are tested to see if they are a match. I have a brother who was 16 now 19 and a sister who was 8 now 11. They said my sister was too young but they tested my brother and Thank God he was a perfect match. Me and my family were not expecting this great news at all as doctors told us there is was only a 1 in 4 chance of a sibling being a match! They said you could have 10 children and none of them be a match so I felt extremely lucky. If he wasn't a match I would have had an unrelated donor and the success rate can vary but the process is the same. Before preparing for my transplant I had 2 final rounds of chemotherapy. 

Preparation for my transplant took a few weeks. I had lots of tests on my organs to see if I was healthy enough to have a transplant. I also had an MRI and CT scans. I was then given a very high dose of chemotherapy and total body Irradiation which totally wiped me out!  ( this killed my bone marrow completely) I had 9 minutes of TBI twice a day, for 3 days and on my final day, I had my brothers cells transfused in me to rescue me (very confusing but I will blog in detail). Next I had to stay in isolation to recover. It took a few weeks for my brothers cells to start to engraft, then it was just a waiting game to see if it worked or not.  
Now I take each day as it comes. I started off having weekly blood tests, then monthly and now I have just hit the every 3 months mark. I also have a clinic appointment every 3 months where my consultants check me over and talk about my blood test results. 

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