The battle continues

So, recently lumps have appeared around my body, one on shoulder , two in right boob, one where my ribs are and one in my upper right bum cheek.  The one above shoulder needed removing as it was growing so I am currently waiting for the results.  They think its metastasis but we aren’t sure.

I’ve also been experiencing the worst stomach/tummy pains ever.  They have made me vomit on occasion too. So Wednesday I was checked in to the local general hospital where they gave me blood tests and a chest and abdomen CT scan and x-rays.  They said it may be crone’s disease, then that its an ulcer, then that its metastasis and that I will be needed intravenous chemo.  Needless to say I was devastated.   Then I checked out of the hospital and went to see my doctor who checked the CT and he said he said signs of a swollen bowl are visible and fluid in the gut.   So I am having some fluid drained to be sent off for testing to see if there actually is metastasis and also waiting for the biopsy of the lump results to see if that is metastasis too.  Talk about a difference in opinions.

My poor veins are all buggered, broke and none existent in my left arm and have that many holes I look like a junky lol   Now Im on some strong pain relief thank god and I’m on the waiting game.

So I can either have metastasis or not.. here’s hoping not.

Absolutely fed up but hopeful.

Chest pains with a side order of panic attacks

So last night I had really bad chest pains and difficulty breathing which then resulted in a big fat panick attack. One of the good things about this hotel, is that its more a patient hotel rather than a holiday hotel, so the receptionists etc are also nurses.   So Adam whent and fetched one and she said I had to go to A&E.  So off she rolled me in a wheel chair and they gave me a an ecg, blood tests and blood pressure checking, the usual stuff really and said it’s quite possibly the cortisone. DAMN that stupid fing cortisone.  Its given me nothing but hassle.  I’m down to  two mgs a day and it’s still effecting me.   Bad stuff that.

So today I have to have another ecg and see what the blood tests say when I see my doctor.   I feel very rough today, hard to move around it’s as if someone has sucked out all my air and energy and left wobbly leftovers.   arghhh 

Getting zapped at 12 and its my 11th time! I’ve passed the half way mark.   All being well, I am booked to go home on the 14th of March! YIPEEEEEE

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

CT scans suck

CT scanning machine

Well I arrived late at the hospital again yesterday because I forgot my doctor’s note at home. I got my bottle of gross water and proceeded to the cafe to drink it. It was awful. We’ve all had to do it, but I don’t know if other countries flavour is as bad as mine? What does yours taste of? A whole litre of aniseed powdery water. Two glasses straight away then one every fifteen minutes. It’s meant to go in via the mouth so it will light up your intestine. I have to say I really struggled. I was gagging all over the place which in turn made me feel really ill.
There were a few others waiting there. This lady told me how her son in law died six months ago from melanoma. Said it all started a year ago by a mole from his back and after they removed it and he had a bone scan and he got told he was ok, he never went back to the doctor. He then got metastasis in his armpit, a very very large lump and after that he just gave up the fight. Said he still went in the sun wasn’t careful and that was that. Sad story.
I didn’t go in to scanning room till about 1130. After the warm pissy feeling was over I was done and someone came in and said, we need to give you an ultra sound. I crapped myself. So did my mum and sister. So off I went to this dark room again with the same doctor who had done my boobs a few months ago and he gave me a neck scan. I watched as he went over something which to me looked scary and I thought that was it. I was done for. But he finished and said all is clear. What a sigh of relief. No sooner had I got off the table then when he got me back on it to check my womb. He said my cervix looks enlarged and that I need to go and see the lady bits doctor. Great I thought. More invasive tests I can’t wait.
So I walked out of the room and my mum, sister and that lady where waiting for me holding their breath. I said ALL CLEAR.. my poor mum must have aged 10 years whilst I was in that ultra sound room. The was a huge waiting list outside you see and the doctor told them all to wait cause he had to check me.
I didn’t leave till 12:20! A long day at a hospital that made me feel drained and rough.
I came home and waited with anticipation to go and see my gynecologist.. NOT. He did my c-section though so I figured he’s seen it all before but no matter how many times you go it really doesn’t get any easier and unless you are a woman you can’t possibly understand how awful it is. The good news is that he said that all appears to be normal but I won’t get my results till Friday next week.
So as far as everyone is concerned I appear to be normal. haha (if only they knew) Official results for CT on Monday and other test Friday.
Today I have a stupid cold and slight chest infection. I feel hung-over even though I had nothing to drink. It’s the weekend though so that good. Going out with my husband tonight to cheer myself up.
I miss having a job even though with everything that is going on and all the tests I’ve needed I would have been away a lot, its hard trying to find a job in my current situation and I feel very upset that I got fired whilst they all knew I have malignant melanoma to deal with too. But at least I can hold my head high. Ihave applied for a few jobs and still waiting to hear about the other one I went for a few weeks ago as position doesnt open for a while so fingers crossed for that.

I hope you are all having a nice weekend. 🙂

Tests and Results

So I went for my CT scan on yesterday.  The usual people where there and I was late cause I got the times mixed up and they were actually worried about me. Getting used to seeing me now.  They got me all ready with the butterfly and off I went.   It doesn’t seem so scary anymore but I could think of other more fun things to do! I also go prepared with a dress with no buttons and no metals so I don’t have to change into one of those drafty robes.. lol

Anyway, they called me after I left to ask some questions and then the doctor said it was clear. ALL clear.  Which means I’m all clear again.  Talk about a roller coaster of oh shits and sighs of relief..

I spoke to the secretary of the oncologist I was being referred to and she said he looked at my scans and that he confirmed they were clear too!  So I was referred back to my radiologist. I have no idea whats next as she said I’m back on the watch and wait list again..I am going to see my first oncologist sometime next week to see what my options are.

I came across an article about vitamin supplements and malignant melanoma by the daily mail. It says that it can speed up tumor growth especially in women. You can read it here but it advises not to take pills containing vitamin E, ascorbic acid, beta-carotene, selenium and zinc http://www.dailymail.co.uk/health/article-1315724/Could-daily-vitamin-pill-cause-skin-cancer-Scientists-fear-speeds-tumour-growth.html#ixzz10qblvN00 

I’ve also been told that over exercising can harm you as your body needs to fight cancer and not focus on building your muscles! 🙂

So all good news again for me. I feel blessed and lucky and supported by many. Thank you 🙂

Results

I finally got a call today from my doctor, he said that its not good, he said that I will need treatment.  I asked if its radiotherapy and he said as that hasn’t worked they will need to find another way of treating it. 

Its bollocks isn’t it. After all the bus rides, the burns, getting fired and now I still have cancer.  How sucky sucky sucky sucky is that.

I want to shout obscenities, I feel like I’ve been punched in my stomach and my whole world has collapsed again. The whole world is happening around me and I just want to shout stop. I want to get off now. I don’t like this ride I want to go on another one please.

So I guess you can say that my melanoma is putting up a fight.  I wont give up though and I have more fight in me, and I refuse to let this beat me.

But for now I’m gonna walk around in a  haze, feel sorry for myself, be really really really pissed off and perhaps shout a few obscenities at the world. 

😦

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