My journey

In June 2002, at the age of 19, I became ill with an unknown liver infection, and after several weeks in hospital and lots of medication later I was discharged on the condition I attended my GP surgery each week for a check up. During one of these check ups, I explained to the doctor that I had found a really bad rash on my legs, and had begun bruising all over my body, but I was sure I hadn’t bumped into things. The doctor seemed concerned and took some blood tests, then sent me off to A&E. I was diagnosed in August 2002 with a blood disorder called “Very Severe Aplastic Anaemia” aka VSAA. I couldn’t believe it…I had already spent weeks in hospital, and wasn’t happy at the thought of spending any more time there.

I was sent to the Ruth Myles Unit, at St George’s Hospital, about a week after I was diagnosed. At the time I was a single mum to my 18-month-old daughter, and I had never spent any time away from her before I got ill, so it hit both of us extremely hard.
My family were great and pulled together to take care of her, but I was so angry with myself, and my illness, and just about anything or anyone else that I could blame! I think other than not being with my daughter, the thing I found hardest to deal with was having no control. I couldn’t do anything as far as I was concerned and had no “reason” why…….I couldn’t be a mum, I couldn’t be an aunt, I was useless….all because of an illness.

But looking back now, it changed so much in my life, most of all me! Now I can see all the little problems and hassles in life as what they are: little problems. I can appreciate things that, before I got ill I would have taken for granted. I probably have more control over my life now than I did before I was ill, but I didn’t realise this until after I left hospital.

It was such an emotional roller coaster. During my 9-month stay at the Ruth Myles Unit, I began to write a book on my journey. It began as a book for my daughter, just in case anything bad did happen, as then she would have a small insight into me, but also what happened. After I came out of hospital, I decided it might be useful for other patients and their families, so continued to write. Here are some extracts from my book detailing more of my journey:

“It never occurred to me how attached I would become to this essential ward and how it was going to become my home from home. Nor did it cross my mind how close and dependent I would become to the staff. The staff at Ruth Myles Unit are amazing, and go beyond their job description, from domestics and the receptionist to the nursing staff and doctors. I don’t think any of them realize just how special they are to patients like myself.

I can remember occasions when some of the staff were on holiday, and would pass messages on to other staff to let me know they were thinking of me, and it would inspire me to want to be doing really well and feel better when they came back.
Another special member of staff to me was the receptionist, who also introduced complementary therapy to the ward, which I will talk about further on. She was an amazing person who helped me in so many ways; such as facing my fears, coming to terms with my illness, but she also helped me find part of me I never knew existed, and look at life in a whole new perspective.

Treatment begins
The first line of treatment I had was ATG/ALG serum. These antibodies help reduce the activity of the lymphocytes (white blood cells) which are attacking the bone marrow stem cells. I got delayed serum sickness; it took a couple of days longer to affect me. I wasn’t physically sick, only my temperature went up, but as soon as I told the staff I was given medicine to take it down, cold drinks and a fan. Afterwards, I couldn’t understand what I was so scared of, we’ve all had a temperature and sickness before and if it’s going to help you for life, then it’s worth a couple of days of feeling rough, especially when your not feeling great anyway!

It might not work
My first feelings at hearing these words were depression and anger. I didn’t want to be in hospital, I wanted to be at home with my daughter, my family and friends. I wanted to be doing everyday things not sitting in a room on my own, with machines beeping around me, and people telling me everything would be great ‘when’ I got home. Then being told it might not work. Everyone’s different, there is a small chance it won’t work, and this could make all the difference for you and for others. For me it didn’t work, which meant my last option was a bone marrow transplant. I was let home for 2 nights to spend sometime with my daughter, before coming back to hospital to start assessing what steps had to be taken next.

The doctors tell you once you go home to take things easy, accept help, and avoid certain things or places, such as crowded places e.g. buses and supermarkets.
I went home and wanted to be ‘me’. I wanted to be a great mum, running around with my 22-month-old daughter, doing shopping. But as well as doing this, my daughter had a virus, and I wanted to be with her, ill or not, and I caught the virus. I was back on the ward again.
After being extremely ill, and scaring just about everyone, including myself, the next step of my journey began. My brother and sister were both tested for a match as a bone marrow donor, but neither matched me…I was beginning to get that feeling that everything was against me again. This is when Prof Marsh contacted the Anthony Nolan Trust, and with in weeks my luck had changed…I had 256 possible matches! This was eventually narrowed down to one, my closest match, my saviour!

Chemotherapy
I think just hearing this word scares everyone, and I was no different. You automatically began to think of side effects you’ve seen or heard via television or books such as sickness, hair loss and fever. But everyone is different.
Before my treatment I tried to prepare myself, I’m the type of person who likes to know what to expect, rather than be surprised. I read information over and over, and asked everyone questions. I wasn’t too concerned about the fevers, they’d been happening on and off for months, and as much as I didn’t enjoy them I knew they would pass.

I found it really hard to cope with seeing people. A lot of the time I felt as though people only came because I was ill, as though they had a duty to see me. I know now that it was just as difficult for people who care about me to see me the way I was. I had such a need to be ‘me’ and not ‘sick’, that I had changed, and because I had changed, people’s reaction towards me had changed too. A lot of the time people didn’t know what to say. Whether to talk about my illness or completely avoid it, and unsure if speaking about everyday life would upset me or not.

“I remember one time when my sister came to visit, and mentioned something my daughter had done, and had probably done a thousand times before. After she had left, I locked myself in the bathroom and cried my eyes out because I wasn’t there to see it. Ironically, it was something I had seen her do time and time again but on this one occasion I missed it, and that hurt.”

All patients on the Ruth Myles Unit have isolated rooms. When I was on the ward they had arranged for a series of complementary therapies to be available for the patients to try. I think this was to boost patients’ moral and lift some of the depression, but for me it did more than this. It not only gave me company and filled in some of those never ending hours, but it opened up a window to a whole new world.
Everyone has there own beliefs and disbeliefs, whether it is in one god, or more, or chakara or spirits, everyone is entitled to their own beliefs, it is what makes us individual. I am very open-minded and love to learn new ideas and new ways, and follow what feels right for me.
Bio-energy for me was one of the greatest experiences, it helped me physically and emotionally, it helped me learn to overcome my depression, and in a way I suppose it gave me something else to focus on. As I’ve said before everybody is different, and these therapies may not appeal to you or interest you, but the way I looked at things when I was ill, was that anything was worth a try, even if it was just to take my mind away from the reality of it all for a while.
I had several sessions of this, and learned a basic grounding technique, which I also use now just to help me feel a bit more balanced and focus on tasks that seem a bit difficult. It is something that I truly believe in and would encourage anyone to just have a try.

Going home
No matter how hard you imagine how it will feel to finally get home, you could never believe how much of a relief and how fulfilling it is.
I didn’t get home till late at night, as I had to wait for my sister to come and get me. The first thing I did when I walked into my mum’s home was go upstairs to my and my daughter, Kelsey’s room. She was fast asleep in her cot. All I can remember was kneeling by the side of it and bursting into tears, my mum came in to comfort me. I can remember her telling me “its ok, its all over now”…….but deep down I wasn’t so sure.
I knew I still had a long way to go yet!”

A new life
My life is back on track now; I have a wonderful Fiancé, who supports me in everything I do. A lovely stepdaughter, and a son I never thought I’d have. As well as finally getting to regain the time with my daughter, and be a mum again.
But most of all my journey has given me a new life…one where I can help other people like everyone helped me, I’m even training in energy healing myself, in hope that I too can help inspire people and help them see how great they can feel!!
Return to Top