Road to recovery

Its quite a long one.  You get sick, you get diagnosed, you get treatment then you need to start getting better. Everything changes about you.

My legs are still weak and its frustrating getting up off chairs which sometimes cause me headaches and dizziness so I have to do things slowly.  I darent squat cause I’d never get back up again but I am able to get up off the floor now by myself which is a bonus.   My head is bald apart from a few stubly bits as it appears the chemo tablets made what little had grown fall out.

The doctor prescribed me some stronger anti emetics so nausea stopped and I was able to eat normally again which was fab.  I am off them now for a three week break.

Tomorrow I am having an ultra sound scan to my armpit area as I have a sore bit there which could be scar tissue but its best to get it check out and I a also having my follow up MRI too.

Fingers and toes crossed for good news.

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9 tumors not 10!

Hello.

So the doctor today told me I only have 9 brain tumours.  That has pleased me lots. Silly really. But its better than 10. This was discovered from the recent CT and MRI scan I had last week.  Fab result.

They are still doing the brain mapping so treatment will not start till Thursday probably the Dr said.   Tomotherapy treatment which is not available in Cyprus is a CT scan machine which will give HIGH dosages of radiotherapy direct to the tumours and kill them as well as any other affected area of metastasis.

I start my chemo tablets the same day I start my radiotherapy too.  I take cortisone tablets still which make me eat like a horse. ALL day. The weight is piling on but I can’t stop eating and its annoying.  Most days I cope but there are days when I feel my body weighs a ton and I cannot move. I’m like a rocking back and forth mess and I last night I didn’t sleep well at all and was awake from 6 am going nuts with worry.  I hate days like that.   But once I manage to pull myself together and eat I am ok.  Food appears to be my best friend at the moment.   Poor Adam gets to deal with a real cow bag sometimes. Snappy as hell one minute and go away leave me alone the next. 

We have been out into Bamberg a few times, fresh air and walks are good for me doctor said cause the cortisone is affecting my joints so now I have a faithful crutch to take everywhere too. I’m a regular pensioner in a 35-year-old body. ha     Bus journey is short and cheap too.   Its very beautiful here.  

I miss my son terribly.  I wish I had brought a teddy of his or top or something so I could snuggle up to at night. I just wanna smother him and cuddle him and kiss him. Skype helps with that a little but doesn’t help the cuddle cravings.

We have found a few supermarkets so we can stock up our little fridge to keep my batteries going throughout the day which helps keep food costs down.  Amazing how much you need when you don’t have a cooker or any facilities to use.  But they do have hot water on tap here so thats somet.

They don’t have tea. Normal tea. They have all the tea you can think of, flavoured, vitamined, minted, sugared, green, bright orange but no normal tea. And sometimes I nice cup of tea makes it all better.  And their toilet paper is SAND paper. I kid you not. NO JOKE its like cheese greater paper. haha And it’s everywhere, even in restaurants.  Hard asses here I swear. haha   So much for my sweethoneybums (those of u know that nickname for me that is).

Still. Everyone is nice.  My german that I did in school years ago stuck with me and I am so pleased cause I can order delivery and I can ask for stuff and communicate basic with everyone.  Not just a pretty face me. ha

Well here are some photos of the clinic.  The hotel is stuck to the left of it, its only one floor though. I single floor hotel. lol

Clinic

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Hotel just on left of clinic

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Update

Hello all!

So I’m in Germany, Bamberg, in this hotel called Somnia which is attached to the clinic. It’s just a BB so we are looking for alternative self catering as you can’t get any food here after breakfast.

Yesterday’s journey was awful. The flights initially where wrong so they had to be fixed.  We landed in Munich and waited on the plane to take off for Frankfurt.  Once there I was exhausted but Lufthansa arranged a wheelchair and took me through on my very own bus to the next flight to Neuremberg and all free too.  Once on that plane which took 25 mins I felt even more ill but soon landed and got carted off in yet another wheel chair to the taxi.   Our taxi driver Paolo from Turkey was lovely and ever so understanding as I was violently ill before we drove off.   Think the stress caught up with me.

We soon arrived at the clinic then hotel.  Then it was a rush to find some food.   Totally exhausted went to sleep thankful for the days end.

Today we had a hearty breakfast.  Went down to the clinic and spoke to the radiologists about whats next.   I went and got measured for a mask. That was strange as it pins you to the bed and you can’t see out of it there is a space just for the nose.  CT was soon over and shortly after the MRI.  They want to check there are no more tumours.   They will then match the two together so they can target exactly where the tumours are and the mask will ensure I do not move throughout the process. 

The side effects will be minimal, controllable headaches probably as my brain my swell; but tablets will help.  My hair will fall out in about three weeks and take a few months to grow back but I wont be in any pain.   Tomotherapy is a great way to treat my tumours so I’m very pleased about that.

The doctors here are lovely, and I’m pleased to say my German that I learned in school gets me by quite well, most of the time. Excellent.

Mornings are the hardest as it takes me a while to start functioning and reality hit me hard in the face since I got here, but I just keep saying I can do this. I will get through this, come on brain work with me here lets get a wriggle on.

My joints are hurting and I fell in out of the balcony today. Was quite funny really, I was ever so graceful. Thats quite rare for me I’m such a lump.

So all is well.  Treatment officially starts Tuesday they think.  I am seing the doctor today to discuss things further. Hope I can keep my eyes open.   

Weather is so crisp and fresh that makes me feel alive which is always a good thing eh.

Till the next blog then 🙂

Faith. x

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

Good news and bad news

Well you can imagine how I was feeling for a while with the news that I may possibly be poorly again!  However on Thursday I was told that my MRI was all clear! YAY I think what he felt was scar tissue from where the drain entered near my ribs. Its still quite sore there still.

I know have to get my new lump tested today.  I’m seeing the doctor that did both my surgeries who is supposed to stick a needle in it and draw out some fluid. I hope its just a stitch so I can smack him for scaring me and leaving it in the in the first place! haha I do not want to think about the what if. I’m out celebrating tonight in town with all my friends who have supported me throughout all this. So around 10pm Cyprus time, please raise a glass and drink to good health, good friends to you and to me! 🙂 (thanks)

The bad news is I’m now unemployed.   I have to say the timing is rubbish but I haven’t let it get me down. I have plenty to offer a new company and I know they will be lucky to have me.  When one door closes, another one opens.  That’s the way life works.

I just want the all clear. Trivial things are not important when you are given a cancer diagnosis.  So once I get the all clear again after they test my new lump, I can hopefully find a new job as I although I have plenty to offer, no one will want to hire someone if they are suffering from cancer and need lots of treatment.  Talk about the wrong time to be unemployed. But there’s never really a good time to be unemployed. Unless of course you have just won the lottery, then that’s a great time to be unemployed. haha

So watch this space for new lump news. Fingers and toes crossed that its nothing. I could really do with some good news.