Becky’s Story

Becky

When I was 8 years old I was diagnosed with a benign brain tumour. After going for a routine eye test the doctors could see something behind my left eye so I was sent to Kings College hospital in London where I was diagnosed with a benign brain tumour.

After the last operation I could not walk and so I was in a wheelchair for a while and had physiotherapy to get me walking again. The operation also left me with permanent double vision and blurred vision in my left eye.

My Neurosurgeon is called Chris Chandler and I think he is an amazing person! He is so loving and caring and always makes me laugh. He is not patronising towards me and to me, he is my hero! I had a 6 week course of radiotherapy which made me loose a section of my hair.  In result to the radiotherapy I didn’t eat very much and got very underweight.  I also had a couple of operations on my eyes as my left eye was not straight and looked like I was looking out to the side. The radiotherapy destroyed my adrenal gland and my thyroid gland, so I now take artificial adrenaline and I also take a tablet to replace my thyroid gland, I am also on this for life.

Before I got my tumour I was a very outgoing confident child with loads of energy but now I am very unconfident and shy. I also get tired very easily.

In November 2010 I woke up and felt totally normal, had a shower then when I got out the shower I had a headache but it didn’t feel like a normal headache, it felt like when you wash your hair with cold water, a stinging sensation. I was sick a couple of times so we went up to the local hospital where I continued to be sick.

I had a stroke and collapsed at the local hospital and was transferred to Kings College hospital in London by ambulance where I was on life support! I was rushed straight into theatre I had a double brain haemorrhage. I was in hospital for 9 weeks over Christmas and New Year. The fluid had to be sampled every so often and checked to see the red blood cell count which had to be low enough to have a shunt fitted, if the red blood cell count was too high the shunt could block so my surgeons had to wait until the red blood cell count was low enough. I had to have a drain fitted to drain all the blood in my head.  The red blood cell count had to be around 30 but mine were 7000 and kept going up and down. I missed my dog so much while I was in hospital and the sister on the ward had promised me that on Christmas  day I could have my dog in my room with the door closed for the day, I had a picture of my dog up in my room :). My mum and Nan put a mini Christmas tree up in my room.

Off of the top floor of the hospital you can see the London eye so on new year’s eve my mum and sister were allowed to stay and my other sister surprised us and came up to the hospital and we watched the fireworks come off of the London eye it was amazing!

I got on with the nurses very well, they were so lovely!

My mum stayed at my Nan and granddad’s house while I was in hospital because they live in London.

I didn’t really eat much when I was in hospital and I lost a lot of weight.

My veins are the worst!  The nurses could never find a vein, and my mum told me that when they got to the hospital my arms were black from my elbow to my wrists on both arms with bruises where they tried so many times to get a needle in a vein.

The first dinner I wanted when I came out of hospital was my mum’s roast potatoes, are the best!

I’m definitely a true believer in the saying *everything happens for a reason* It really does because just before I had a brain haemorrhage I was looking at getting a new medic alert bracelet which I wear all the time, and it has all my medical information on it, but decided to leave it because it was a bit too pricey. Good job I didn’t get one I would’ve lost a lot of money!!  I got this saying tattooed on my foot J and I love it.

After having the shunt fitted I was still getting headaches literally every day and couldn’t lean forward or look up as I got dizzy! My shunt had blocked.

My parents eventually met me after they were able to get away from work. We were told that the nurse had to ‘watch me like a hawk” I had to move to another ward. The nurse told us that on the handover the doctors told her that I was waiting for surgery so me and my mum both said “what surgery?” because no one had told us anything but even then the nurse couldn’t really answer our question because she didn’t know.

Finally we got some answers and were told that I was going to have an operation on 2011 and they were going to add another shunt because the shunt I had was only draining one side and wasn’t draining enough. So they were going to fit another shunt! When the surgeon went in and moved the catheter part of my shunt a load of fluid came rushing out so it was blocked and must have been putting a lot of pressure on my head!

They replaced and repositioned my shunt and didn’t fit another shunt in the end. I was allowed out a few days later J luckily because we were going away on holiday to Cornwall that weekend. My surgeon used the same scar that he originally made for my shunt so I didn’t have another scar to add to the collection!

I had a scan and went back for the results exactly a year after the haemorrhage and the results were that the tumour was growing fast…so my surgeon wanted to send me for a biopsy to determine what the tumour was.

The operation went well, and I was allowed home a few days later.

The results came back that my tumour is a  Glioblastoma Mulitiforme, which is a grade 4 brain tumour. My tumour has changed and is now cancer, my doctor thinks that my tumour may have changed by the radio therapy I had when I was younger but he is not certain that it was the radiotherapy, so I was absolutely fine for 10years.

I had a year of chemotherapy called Temodar and finished in October 2012. The chemotherapy was oral so it was just tablets.

I had a scan just before Christmas 2012, it showed that my tumour had slightly grown so I have to have more chemotherapy, this time it’s a different chemotherapy, called PCV chemotherapy. I have to be hooked up to a drip every 6 weeks and then take tablets for 10 days after the drip.

I had to get a PICC line fitted which is a permanent cannula in my arm and it will stay in for the duration of my chemo which is 6 cycles.

My balance is quite bad so I have to hold on to somebody’s arm when I am walking, I also use my wheelchair whenever I go out as I cannot  stand up for very long or walk very far as I get tired easily.

Work was really supportive when I was in hospital. They kept my job open for me to go back when I was well enough. Now I am not well enough to work so am on benefits.

My attitude to life is to live everyday as it comes and not take anything for granted. I never feel sorry for myself or want others to feel sorry for me because however bad it is for me there are millions of people who are going through much worse things.

I never sit and feel sorry for myself I like to take every day as it comes and I am always smiling! I am so glad to be part of Teens Unite, I really enjoy being able to spend time with people who have been through similar things, and do things and being able to share the same experiences with one another. I am really grateful that I am part of Teens Unite.

I hope my story will help others going through times like this and never give up hope!