MRI Results

Hi all

I got my MRI results.  It turns out I have 10 brain tumours and the metastasis has started to spread to the bone in my head.  Scary stuff.

There is a doctor in Germany who is ready to start to fix me, so I am currently on a race to raise 14,000 Euros just for the treatment. This is the initial stereotactic brain radiotherapy.  Not sure what comes with it but after probably chemo.  More on this later.

I am being set up as a charity on Monday so people can make donations to an official account via my solicitors in Paphos but I will aslo provide a UK bank account too.

I have made a facebook page (other than my persona account) so you all know whats when – this will include bank account and donation areas.  Please join it http://www.facebook.com/#!/pages/Aletheas-melanoma-fight/142237025835795

I am feeling increasingly tired most days, its hard with my son as some days he wants nothing to do with me as he can sense I am upset even though I sing and act silly.   

Soon I can go to Germany and all this will be a bad dream and I can start getting ready.  Here is where I am due  to go http://www.sozialstiftung-bamberg.de/

My right affected side of the brain as u look at me 

One of my tumours

What the other doctor said

I went to see another oncologist on Saturday.  He looked at my previous head scan and thinks that possibly they missed my first tumour.  The one u can see biggest in the picture. But I guess its had since October to grow.

He recommended stereotactic radiotherapy which targets the tumours rather than the whole brain.  He needs to get in touch with a doctor in Germany and let me know.

I havent started treatment yet.  I went to Nicosia today to get my head measured for a mask but the attending doctor didn’t see the point if I have not yet decided if I am going to Germany (if the government will fund it). He also said that for more than 4 brain tumours they dont give stereotactic brain therapy, and that my CT scan doesnt give a really clear image of my brain and I can have 10 tumours now, not 7 to which I replied “jeez thanks very much”.  So I didnt leave there too happy.

The bus journey back was tiring and made me queezy.  But I went and got some sushi, and a plate of chips to take away.  I never thought i’d see the day Id like Suhsi. Christian ate some chips then after a short nap proceeded to throw up all over me, the couch and the floor. So the cat ate chips too.. gross.

I feel so hopeless.  Every day I wake up and I think, shit I have terminal cancer.  I try to fight it and I scream and I say I am stronger than you melanoma, you wont beat me. I will win. I will be victorious.  The drugs make me a little woozy so sometimes I don’t know if I am coming or going.  Thats quite frustrating.  Every day is a struggle and hard to get on with it.

I wish I could just go to sleep, and wake up when it’s all better.  I want to start treatment so then I am actually fighting. Right now I feel like I’m just sitting doing nothing.

So Wednesday I go back to Nicosia, if I don’t get the Germany option and start full head brain radiotherapy for 5 days.  This will result in complete hair loss and other shite side effects which I’ve been reading up on. So I just want the tumours to vanish and I can get on with my life.  I guess next time I get a headache, I’ll be a bit more paranoid.

Thank you for all your comments and best wishes. They do help and are very appreciated.

I’m fighting, I am winning, I am alive and its my right to be. 🙂

What the doctor said

So I went to Nicosia today with my husband and two good friends.

Dr Katodritis is such a lovely doctor and has a sense of humour which I think is very important when having to deal with someone like me.

He said what I have obviously is very bad and I must start treatment immediately.  I go for a brain mask measurement on Monday and then start treatment full brain radiotherapy.  I take a chemotherapy tablet every day, cortisone, and anti emetics as well as anti seasure drugs too.  Last thing I want to do is end up rolling about on the floor.

I’m going to lose my hair.  I’m totally gutted about this even though I know its going to grow back so I’ll be off to get it all chopped tomorrow so the shock is gradual. I’ve always wanted to try something new so now’s the time 🙂

Life expectancy for me is a year. I have an incurable disease so I’m terminal now. Bollocks.  But doctor said I can get well soon and it depends on how well I respond to my treatment too.  So I’m staying positive even though I think I’ve been kicked in the stomach and my whole world is upside down. It’s so not fair. I have so much life in me. I don’t feel ill, don’t look ill, so why the hell am I ill?! I’ll fight it. With every thing I’ve got.

Not good news but miracles don’t happen over night.  I will have my miracle though. I will walk out of that oncology unit a miracle.

I went to try on some wigs after. Had a right laugh with my friends pulling silly faces and poses. Think the woman isnt used to people going in smiley trying on wigs cause they are gonna go bald from cancer. Sucky times. But you know me I make a joke out of everything. It can always be worse.

Once my treatment is over I will have to get re staged and hope its no where else in my body.

Here I come melanoma. I’m ready for you. I’m fighting you. I will be victorious.

I am going to live! Whoop Whoop

How I feel

Well during the day, I feel ok. Today is the first day I woke up without a headache! Bonus.

nighttime is different. I get all snuggled up with my husband and act all silly and tell him I love him and that I’m sorry if I don’t wake up the next day. He says don’t be silly. 

I am afraid of going to sleep.  I’m afraid I wont wake up again.  You can say don’t think like that. I dont. I dont think I am going to die. I think I might not wake up. Not that I’ll know if I haven’t but If I suddenly find myself upstairs I’ll be really pissed off and demand he sends me back. But by then it will be too late. 

So every day I wake up happy, just cause I’m awake. My house is a mess and I really want to clean it but I can’t be arsed. Think that’s the depression side.  Then I put you tube karaoke songs on and I start singing out loud like an idiot which cheers me up.

My son nearly two can sence there’s something wrong and isn’t really into me at the moment and cries if I pick him up. That’s upsetting so I hope he’ll come round soon. I need his cuddles. They are very therapeutic.

So now you know how I feel.  I am ok. I can beat these 7 little shits. There’s no room for them in my happy brain. But after a long day when I am tired they are there to remind me that life is short and I’m to make the most of it. Not forgetting ever to tell the nearest and dearest that I love them.

I love you and I’m sorry if one morning I don’t wake up.

There’s stupid and then there’s me!

Ok this is no joking matter really.

Had a day of in-house visitors today; mum came and did some ironing bless her and my good friend Mel popped round with cake and her beautiful daughter Calista. She knows the way to my heart. Meanwhile my husband went with my scans to the oncologist and she gave the impression that there are more than one tumor. So I checked the paper and there it is.. as clear as day. 7 metastatic tumours.. SEVEN..  yesterday I was like “well I only have one so i’ll be fine”.. now I have 7. well I had 7 yesterday.. so my new line is “I only have 7” it could be worse. It could be a WHOLE lot better but it’s not.

I woke up today so that’s always a good sign. As long as I stick to the breathing in and out again I’ll be fine. Roll on the radiotherapy. Not sure when I start but probably next week I’ll be back on George’s cancer bus.. I’ll be there to cheer everyone up.. perhaps I can act even more silly as I can say “I can’t help it I have 7 brain tumours don’t you know..”

Bloody hell.  Cant really call them all charlie..but I’m not gonna name them all.. so now I’m snow-white and the 7 dwarfs.. after all I don’t sunbathe anymore.. so Happy (from when I’m acting silly) Sleepy (from when I’m knackered),  Sneezy (cause I always do that) grumpy (for when I just can’t take anymore and Im pissed off and swearing) Dopey (cause I was yesterday when i thought I had only one when it clearly said 7) Doc (for when I chant my get well and shrinking chants to them) and Bashful (for when I’m shy when all hands are on me)

So there you go.. 7 personality Alethea.. 🙂 

Today I’m Dopey. Clearly.

Brain tumor

Just when you think things couldn’t get any worse.. they do.

I had another bad headache this morning so I decided to go the general hospital a&e to get some help and insist on a scan. I was soo poorly.

They put me on a drip and said they can’t bring my scan forward as I wasnt an emergency; I hadn’t been in an accident.. so my sister called my oncologist, whilst my mum yelled at the a&e doctor and said what if she’s got a brain tumour? will she be an emergency then? Anyway my oncologist spoke to the doctor and finally I was wheeled in for a brain scan.

Results are I have a brain tumor. 24.2×17.1mm in size in the frontal right side of my brain.

meet Charlie, my brain tumour

 

So this is Charlie. As I already used Bob for my drain I chose Charlie for my tumour, wouldn’t want to get repetitive now would I!

It’s not fair, I’m too young and I want more kids and I want to see my son roll his eyeballs at me when I shout LOVE YOU when I drop him off at high school. Hopefully they will zap Charlie to death, pump me with stuff that will make me go bald and look like something from a zoo and get rid of it and I will do what ever it takes.

For now I have to take cortisone tablets 3 times a day and something for my stomach. So I’m gonna be looking like a puffer fish before long.. yummy.

So once again, I am praying for a speedy recovery, to god, Buddy, Allah and all who are listening to my prayers. Friends unite and pray for me and all the other cancer sufferers out there and for gods sake STAY OUT OF THE SUN!

Wish my news was better.  Will find out more when I see my oncologist.

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