Making the most of it!

I realised i hadn't updated this blog in a while so i thought i'd post about the last few weeks following my last lot of news.

As most of you know i have a pretty big transplant coming up soon. Well before this starts my doctor needed to run a tonne of tests to see how well parts of my body are working ready for all the harcore treatment.

It's all pretty hyper at the moment and i'm getting tossed around for one test after the other.
Yesterday i was at the hospital for two different tests, my heart echo scan and an ECG - oh and also a kidney test.

My kidney test was scheduled at half nine in the morning. I had to be injected with a dye and then hourly for the next four hours i had to return to have a blood test. If my kidneys are working ok, the amount of dye in my blood should have decreased every hour.

Unfortunately my heart scan was not scheduled until 4:10 in the afternoon at a completely different hospital. There was no point going home so we had to wait around a good few hours.
The heart scans are a pain and i won't really go into detail as to why, let's just say you don't have much dignity left after them!

We finally got home yesterday and i was completely shattered. All together we'd been at the hospital a grand total of 12 hours - most of this time was spent doing absolutely nothing apart from waiting around.

We've got a few more tests in the next week including a bone marrow aspirate on monday and a lung function test on tuesday.
Got to go back and see the doctor on the 11th of september, the day after my PET scan, for the results.
Will update here and let you all know how they went.

Until then i'm free from the hospital for that little bit longer, and i intend to make the most of it :)

Last Chance Treatment

So today was the day.

Meeting my new doctor and finding out what so called "amazing" treatments she had up her sleeve.

Turns out she had only one thing that hadn't been tried on me yet.....a stem cell transplant.
Wouldn't really call it amazing, more like a pain in the ass!

This seems like the last and only treatment that they have to offer and the doctor still cannot guarantee if it's going to kill my tumour. Perfect.

It involves a long and what seems like a painful process.
My body will be blasted with high dose chemotherapy, practically killing every blood cell in my body. I will then be given back healthy cells in the hope that my body will take them and start rebuilding healthy cells. Sounds easy? It's not!

The doctor told me on a scale of 1-10 (1 being the mildest chemotherapy and 10 being the strongest) the chemotherapy i will have to have comes in at about a 9 or 10.
I will be in hospital for about 5 weeks while the transplant takes place and then it will take about 4-6 months to fully recover.
Another long process, oh the joys.

I noticed immediately that i was now in an adult hospital as the doctor was very blunt and straight to the point with me.
She rolled off a list of all the side effects, and during the transplant as i have no cells to fight infection, she guaranteed 100% that i will pick up some sort of virus.
She also told me outright that i may die from it, though apparently there is a much higher rate of survival (like that makes me feel any better)
She also told me my fertility will be affected, i will probably find it harder to concieve children naturally.

Damn what a brain freeze. All this was explained to me in about the space of ten minutes. I then got ushered out for various blood tests and scans.
I'm due a PET scan in four weeks, but until then another waiting game.
Once i get the results of my scan, they want to push straight on with this transplant.


Yes i will be in hospital a long time, yes the transplant might not even work, yes i might die from it....but i know without a shadow of a doubt, i'm not giving up without a fight...and a BIG fight at that :)

BRING IT ON!

Putting it off....only time will tell

Most of you know that i've been quite ill recently.
These chemotherapy blocks of the ABVD treatment have really been knocking me about.

Last week i finally finished my scheduled doses and was booked in for a scan this week to find out how it went.

I've been putting this blog off for a while as i didn't really know what to put. I'm on another waiting game at the moment and frankly, i want to be anywhere but here.

I had my scan and that all seemed fine, until we went for the results. It seems that the treatment has done nothing, not even touched it, so unfortunately for me my tumour has grown again. A lot bigger than before.

All that treatment. The days of feeling sick and ill. Me loosing my hair. It's achieved nothing. I'm worse off than when i started. What a kick in the teeth.

At that very moment, i was scared. Looking at my picture, at the tumour, at the little blob on the screen that's eating me up, i was terrified.
The doctor was rambling on about the tumour and other things and frankly everything was a blur, one line stood out though and everything else is just a blank,

"We are running out of options and treatments for you"

Imagine hearing that. Yeah i knew this was slowly killing me but i thought we were making progress on my stupid rare tumour stuck inside me, i was obviously wrong.
Just as i seem to be getting somewhere, i get knocked down again and i hate it.

The doctor doesn't know what to do anymore and is referring me to a specialist adult cancer doctor to see if she's got any ideas. He mentioned something about intensive treatment and hardcore stuff like transplants, which undoubtedly means more stays in hospital and once again becoming very, very ill. Oh the joys.

He's last words were, listen to what her treatment plans are and you can decide then if you want to go ahead.
Frankly i'm fed up. I hate these times when you feel like nothing good is going to come of it, and even when it does it gets torn away as quick as lightening.
I don't know if i want to try this new stuff, if it's not going to work is there really any point?
I'd rather feel well than feel really ill and find it's not worked anyway.

I suppose i've got a lot of thinking to do. The doctor phoned this morning and i've got a meeting with this new doctor on tuesday. I admit now, i'm scared. Scared for myself but also for everyone around me. I don't think anyone wants to go through everything that happened already.

Looks like we will just have to wait and see once again.....only time will tell.