Celebrating a year

In a weeks time, one year ago I had my operation. I really can't believe it. This time last year I was languishing on the sofa and did not even celebrate my birthday, which is this Wednesday.
I have now raised a total of £753.46 for my walk. Thanks so much to everyone who helped me raise so much for Hurstwood Park it means so much to me, more than you can imagine.
You know I'm going to make sure I enjoy my birthday this year!

October Sun

I sent off to Hurstwood Park League of Friends a total of £570.50 last week, and if we Gift Aid it we will make a total of £688!!! Which is so fantastic!! I know it's just a drop in the ocean to what the NHS really need but I've done my bit.
We had a lovely weekend my family and I. We went to Seaford beach and went in the sea in October! It was beautiful.

Trying to find out why?

It is two weeks since my walk and we have now raised over £5oo! I've still got money to collect so the grand total may end up being higher than £600! Brilliant!

I've recently been in contact with my mum's cousin. She had a brain tumour, and so did her mother,( my mum's auntie) and they were both treated at the National Hospital for Neurology.
I wanted to know what type of tumour they both had and it turns out that she had a meningioma, and it was benign (mine was a glioma and an astrocytoma benign). They couldn't remove it all the first time and it started to re-grow and they had to do a second operation in which they managed to remove all of it. She told me that she now has weakness in her left hand side, permenantly. Which means that her tumour was on the right side. She also said that she was diagnosed in her early 30's she is now 49( I was 28. her symptoms were that she had earache so bad that she would be reduced to tears, and it took a few years for her doctors to diagnose what was wrong with her. She is doing well she tells me and long term has few problems, apart from the fact that she is also on anti-depressants.
Her mother was also diagnosed in her 30's with a benign tumour and she believes that she also had a meningioma but that they couldn't remove all of it and that she had to have radiotherapy. It didn't grow back but she had many health problems throughout her life related or unrelated I really don't know, but I do know that she was in a wheelchair at the end of her life and she lived to be 70. She had weakness in one side of her body also. I believe that through talking to my nan who was her sister, that she found out that she had a tumour because her vision was effected and I think that she had a fit.
On talking to my mum's cousin she believes that her tumour was genetically inherited. Which I am tending to think, because it is too much of a coincidence. Even though the doctors who research into the causes of low -grade brain tumours say that there is no proven genetic link of inheritance. The researchers I believe are mainly focusing on malignant tumours, which of course they should do. Anyway I had a low grade glioma and my relatives had meningioma's so maybe it is not at all related. I really don't think I'm ever going to find out why I had a brain tumour, I just can't help wondering.

Walk completed!

Myself and Andrew completed our walk on Saturday. It was a lovely day, sunny and warm, the first weekend of sunshine for a long time! It took us 3 and a half hours in all to do approximately 10 miles. I started at 10.45 and finished and 2.30. We only stopped once for a 1/2 of cider in The Bull at Ditchling. The only problem was that I got very muddy!
I'd like to thank anyone who sponsored me, I am truly grateful. We raised approx. £400!

Hiking for Hurstwood

I am going to be doing a walk next Saturday 13th September to raise funds for Hurstwood Park. They need to buy a fantastic bit of equipment called a Stealth Surgical Navigation Unit. Basically it guides the surgeon around the brain and facilitates the removal of tumours etc.. with an accuracy of 1mm, minimising trauma to eloquent regions of the brain.
I will be walking from Ditchling Beacon to Hurstwood Park Neurological Centre.
Any kind donations for my walk would be very much appreciated.
All cheques to be made payable to; Hurstwood Park League of Friends

Check out there website at www.hurstwoodparkleagueoffriends.org.uk

Short but sweet

I saw Mr C today, first appointment of the day. It all went well and he was very pleased with my progress. The scans showed that my brain hasn't changed since my last scan in May, meaning I still have a hole in my brain where the tumour was. He says it is filled with water and may never fill in again. I asked about the possibility of coming off Tegretol Retard and he was happy for me to do that. He recommended to come down to 400 mg twice a day for a month, from 500 mg. He is going to write to my local epilepsy nurse to monitor me. I will have another scan in 4 months time. Really that was it, I would say he saw me for about 10 minutes. Short but sweet. He is my hero!!

Good News

Well my MRI scan was today and the scan showed all to be clear! Yay! I walked practically straight into the MRI room, no waiting around like all the other times. The same Chinese guy, (the radiographer) was there as always, he is very kind and reassuring. Then the scan and my leg was twitching the whole time! I was terrified, but on the whole I coped much better than last time. When it was finished the radiographer told me he was very happy for me and it was all clear. I was so relieved! Just have to see Mr C on Wednesday 3rd September and then it will be over for another 3-6 months. I wonder if he thinks I should be weaned off my anti-convulsants? I quite scared about that because I really don't want to have a fit. In all the time I had known about the tumour I feared having a seizure the most, more than the actual tumour itself. Even though the tumour was incredibly scary. Oh well, we will just have to see what happens.

Calm before storm

It's my MRI scan tomorrow, and I'm feeling uncharacterically calm. However, when I actually get to the Sussex MRI centre it will probably be another story. Fingers crossed everything will be fine.

Will it come back clear

Almost a week to go until I go to have my MRI scan. I think I am coping a lot better than the last time I had one. However, I am really not looking forward to it. I know everything that will happen almost minute by minute. Going into the MRI room, laying on the bed, holding onto a panic buzzer, headphones on to blot out the noise( which it actually doesn't ), having the headcage put on, then slowly being slid into the tube, the machine. Lying there while a lot of strange noises and vibrations go on for 20 minutes. Struggling to stay still. Then being slid out for a quick injection of fluid into my arm, a dye that shows up my brain more clearly. I have to stay in the same position all the time so that they get a clear picture. If I move they may have to start again.
Anyway that is the easy part, the terrifying part is will everything come back clear again, I really, really ( infinity) hope so!

MRI appointment

I got my appointment for my next MRI scan, it's the 28th August and then my appointment to see Mr C is on the 3rd September. It is really hard going to these appointments because I get so scared that the tumour would have come back, even though the chances are low. At the moment it is difficult to believe that now that I've found relative happiness that my life won't be turned upsidedown again. You can't be happy for long. Or so I believe. I need to work on that feeling.

One of the lucky ones

When I came round from the op, my vision was impaired, my right side couldn't move properly and I couldn't speak all I could say was "um." I also couldn't swallow properly. I must have looked horrific to my husband and family as there were tubes coming out of me everywhere. However, I was really out of it in intensive care. I remember the doctors saying to me try saying more than "um" please, and asking me where I was and what a pen was and who the prime minister is. They then said that they thought that my speech, vision and movement would return as my brain was very bruised.
Then I had a seizure of some kind and I don't remember much until I was on the ward. I thought I had died and I was convinced that the nurses were taking me to the mortuary until I arrived on the ward. Seriously though I had some terrible nightmares and hallucinations I'm not even sure if they were nightmares because everything felt very real. I still don't ask about this time too much because I'm scared of knowing the truth.
Once on the ward I just kept on getting better and better. I was so determined to get my speech back and my movement. When I had food it was really hard because I felt so dizzy and sick and my right hand was so weak I kept on spilling soup everywhere, down my chin everywhere apart from my mouth. However, eventually movement in my right hand did improve and I was able to get more in my mouth than all over myself. My speech was gradually improving but it seemed to me to be extremely slow and I got so frustrated that people weren't understanding me. It wasn't as if I was slurring but I just couldn't find the words. I could say the names of objects and places but when it came to describing what I needed and wanted or everyday conversations I was stuck. I was even more frustrated when nurses tried to force on me the wrong medication when you can't speak you just feel like crying with the frustration of it all. You really do take it for granted that you can speak and do everything for that matter, when you don't have that ability it is so incredibly hard.
I had my staples taken out after about 5 days, I didn't feel a thing really, the nurses said it would hurt but it was nothing. And I had the most staples they had ever seen. Then I had a bath, I was on a hoist and a nurse had to wash me it should have been humiliating but it wasn't really because once youv'e been through as much as I had I really didn't care.
I was discharged from hospital after 8 days the 6th December. I met some very kind fellow patients in that hospital and they really did look after me in there. Many people go into that hospital and never come out or if they do come out they will never be the same again. But I was one of the lucky ones.

The Op

The week leading up to my operation I was frightened to death. I had two fits prior to the op, probably brought on by sheer fear. I just stayed on the sofa for the last week and just hoped I wouldn't have another seizure. I know that sounds incredibly weak and cowardly and selfish but that's how I coped with it all or didn't cope. I was terrified that Kerry would not see her mummy again, how would she survive without a mummy? Not being able to hug and kiss and love my little girl ever again made me so incredibly sad.
Anyway, to the day of my op now and it was all so weird. I waved goodbye to my mum and dad and to Kerry who she being looked after by and drove off with my husband Andrew. We arrived at Hurstwood Park at 2 o'clock. And sat around for a couple of hours whilst they got me organised a room. I had one final MRI and CT scan for usage in my surgery the next morning. I then saw a nice man, a Registrar who took me into a side room and described to me the risks of surgery and then I signed my life away. That evening I found that although I had ordered some food I had no appetite and could not eat a thing. I then said goodbye to Andrew and he was gone. I was alone, it was just me now against the world. I was determined from that point on that I was just going to get on with it.
I took a couple of sleeping pills or whatever they were I really didn't care and went to bed. I got up early the next day and peeped through the curtains the sun was rising and I felt calm. Whatever will be will be I thought. However, when they came for me at 9 am I felt shit this is really happening, too late to escape now! I held onto Andrew and Kerry's photo taken on the Carousel on Brighton's Palace Pier nicer days I thought than what was happening to me now, how can anything be more scarier than Brain surgery. They gave me a shot of something and I was immediately gone into a world of nothingness.

Meeting Mr C

I met my Neurosurgeon for the first time back in the Spring of 2005. For the purpose of this blog I will refer to him as Mr C. I have since met him several times. However, the first time was a very solemn affair. Holding onto my husbands hand tightly and my daughter in the pushchair being very quiet. My mum and my dad there too, so many people in the room, I really had so much support. Looking at the scan the tumour looked very big to me, it was about 3 centimetres long. We all decided that the best thing to do was to watch and wait as it is called. Mr C said that it was probably a low grade tumour as its boundaries were clearly defined and arranged for me to have another scan in 6 months. That scan showed no change and continued to show no changes until October 2007. Then the decision I knew that I would eventually have to make finally had arrived. I was now in Mr C's more than capable hands.

Got to get through this

It's now 7 months on from surgery and although physically feeling better I have been suffering emotionally. I am feeling much better than I did 10 weeks ago when I found my lowest ebb. However, I am now on medication ( Citalopram)for my anxiety and low mood. I have been to the doc's this week to have my dose put up to 30mg. If I can get through the surgery I can get through this. You will probably think me ungrateful, for everything I've been through why can't I be happy but I'm going to get better.

Was something wrong?

Three years ago I collapsed in a restauarant, I was 7 months pregnant. When I came round I had no idea what was happening and had no recollection on how I had collapsed. I was frightened, was the baby alright? The ambulance men were all standing around me, and when I got to the hospital they said I might have had a complex partial seizure or fainted. However, the next few months passed without another funny turn. I saw a neurologist who said he wasn't concerned, that I probably had a panic attack(of which I had a history). I gave birth to a healthy daughter and a month later a had another seizure, and a month after that another seizure. There was something wrong, I had a MRI scan which revealed a glioma a brain tumour in my left temporal lobe.