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.

The Race Of My Life

I finally did it. I raced "For Life" once again

This thursday just gone, i had my usual lot of chemotherapy and once again it left me pretty ill. Sunday came and it was the day of the race, i felt really ill and was sick a few hours before it but i knew i wanted to still do it - and in a way i knew i had to.

It sounds ironic but i literally fely like i was racing for my life, and racing for my life i sure did :)

We decided it best to walk the course instead of running it and we officially came last, but the atmosphere was amazing and i was so proud of myself for not giving up. This race means a lot to me, but i wasn't just racing for myself and it makes me feel all the more blessed that i could finish it.

I've never seen so many people all there for the same reason and it's sad, but also extremely rewarding to be able to walk alongside many inspirational people, whether they were there in person or in spirit !

The support shown for us as we crossed the finish line was overwhelming, so many people were cheering and willing us not to give up - even if we were last :)

A brilliant day was had and i know that everyone was definately looking down on us - the rain started to pour the moment we got in the car to come home!

Why i'm Happy...

People often ask me how i cope, how can you be so optimistic about life, how come you always seem so happy?

The more i think about it, the more i realise how strong i actually am.

I wouldn't really say optimistic, more determined. We're fighting every day. Every drug, medication and chemotherapy that we have is doing one thing, buying us time. It's keeping us alive. Every day we wake up feeling ill or not 100 percent, struggling to get out of bed, we know that's one more day that cancer can't have. As hard as it is sometimes, just getting out of bed in a morning means another day that the beast can't have.

Yes i'm confused about life, i'm confused about what is happening to me. I've been told numerous times that my cancer isn't responding the way it should do but the best thing we can do is just that - go with the next best thing.

I found out again recently that another boy from the hospital had died. I went away with him to the TCT weekend a few months ago. I'm ashamed to say it, but i didn't know him too well and i hate the fact that i never took the time to get to know him better.

I've also heard that two of my friends have fallen out over a boy and are now worst enemies or something. It makes you think though and like i've said before, life is too short to bear grudges. I hate people that fall out and argue over the most pettiest of things - they have no idea. I just don't see the point of wasting your energy on hating someone when there are so many other things to love in the world. It's time people really started to focus on the positive things in life instead of always looking at the negative.
People moan about their love lives, exams, stress, work when really these things are so petty. If you just stop and think about your life, and i mean really think, you will realise that those things don't really matter at all. Yes life is unfair, but it's also too short.

I'm having the crappest time lately, not life wise just health wise. I don't really care about that though. If you think about it there is always someone out there who is worse off than you and that's what i really concentrate on. I may not be leading the perfect life i'd like to, but knowing there is someone worse off than me gives me a reason to keep going. I have a home, i have food on the table and i have my happiness. That's more than what nearly 80% of the population have and that's a fact.

Now can you see why i'm so happy?

Cancer is like a Box of Chocolates

Ever had that feeling of being exhausted even after a good night's sleep?

It seems to be happening to me a lot recently.
I just don't have any energy anymore.
Things i used to find easy are becoming ever so slightly harder.
I wake up in the morning and by lunchtime it feels like i never went to bed, like i missed a night's sleep. My energy is zapped.

I'm still going on with this strong chemotherapy. Had my second lot of it on thursday. I've been really ill with it again, hence why i'm updating this blog on a weekend, i didn't have the energy to do anything again. I have to sit down and rest nearly every ten or fifteen minutes and i can't seem to stand up for to long anymore.

Cancer really is like a box of chocolates. That's how i see it.
You have the chocolates you like and the chocolates you hate.
On a good day it feels like you've picked a good chocolate and on a bad day, a bad chocolate.
The only thing is the chocolates are disguised in colourful wrappers, wrappers that represent life, represent that day that has started. You don't know if it's a bad chocolate or a good chocolate until you unwrap it.

Lately i seem to be picking a lot of bad chocolates, bad days.
Hmmm i never really liked chocolate anyway....


.....Jelly beans anyone? :)

Looking back....

It's amazing how quickly three years fly by when you are stuck in the world of cancer.
The days and weeks seem to go so quickly and they then turn into months, which then become years.

The years that have passed since me being diagnosed have brought on some of the worst memories i can think of, but yet have also produced some of the best times and memories of my life.

We were clearing out the loft a few days ago and i came across all my "get well" cards and presents. Looking through them i noticed the names of the people, people who i hadn't seen for ages. I remember watching and seeing people drift away around me. Whether it was college or jobs, people were moving on with their lives and i hated the fact that i never got to say my farewells to the majority of these people.
I would love to know what had ever happened to some of the people i went to school with and what they are now doing at this very second, yet i know i can't really do that.

I'm lucky in other respects though. I have friends now that i would never have met if i hadn't got cancer. It's weird when you look back and wonder what if? What if i hadn't got cancer? Where would i be now?

Frankly i wouldn't want to know. I'm happy with the person i am now. I have a supportive family and some of the most amazing friends anyone could ever ask for and i know they are there for me whenever i need them. I think about the world differently now and stay positive and happy no matter what. Having cancer has really opened my eyes, opened them to give a much wider perspective of the world. I take each day as it comes and live it to the fullest, knowing very well that every single day could be my last. I'm much tougher now than i ever was, not the toughness that's seen in fighting and bullying, but the toughness to perservere. I know now that when i get knocked down, i can get back up again. Yes i may be weaker and a bit more bruised than before, but there is no way cancer is going to keep me knocked down.

I'm going to fight; and i'm going to fight HARD

First Day......Of HELL

Hmmm, i can write a few words to express how today was,

Stressful, Hell, Sad, Lonely, Annoying..... i could go on.


Yes, today was the first day of my new chemotherapy - ABVD.
I thought things might have gone according to plan.
The doctor told me i'd only be in there for four hours....

.....Eight hours altogether, funny four hours that turned out to be.

Everything was going fine. I'd had the three lots of new chemotherapy and was being administered my final chemotherapy drug, which was supposed to be over half an hour.

The senior nurse put it up fine and told one of the other nurses to keep an eye on it.
I was feeling fine and quite suprised that i wasn't feeling the slightest bit sick.
That was until the senior nurse came back from her lunch break.

Turns out the chemotherapy hadn't gone through and i'd been sitting there for an hour with nothing going into me.
My cannula had now clotted and i had to have it removed.

What followed was a painstaking half an hour of cannula jabs here and there as the stupid woman tried to put a new one in.
I swear she hit a raw nerve with me. I ended up in tears. It was just that stressful and annoying, i wanted to be anywhere but there.

In the end i finally got another cannula in and the chemotherapy got completed, a total of four hours after it was supposed to.
I can't explain the sheer boredom of sitting in a bed, being strapped to a rickety old dripstand, doing nothing. I wouldn't wish it on anyone.

All i'm hoping is it's not like this the next time i go. I've been ill, been sick and i don't know how long it's going to go on for.
I'm just glad i've got a week to recover. Not due back until another fortnight. I think i'll need that long to get over this lot.

Roll on next week eh?

The Girl With Cancer

Ahhh what a rubbish day it's been.

Crappy weather, crappy hospital and i'm feeling pretty crappy myself.

Had my hair shaved today.
I knew it would eventually happen and i knew what to expect, didn't stop me feeling completely awful.
Sitting in the salon chair is normally something us girls love, well not this time.
I watched as my hair fell off and landed around me. I can't explain it but at that one moment something changed again for me.


I'm no longer Amy.
I'm Amy - the girl with cancer.

When i still had my hair it was easier. Noone knew i was fighting cancer unless i chose to tell them myself. Now, looking at my hat covering my head, everyone will know i've got cancer. I can't hide it anymore. It's made everything seem more real and i'm all the more determined to fight it! And i guess every cloud does have a silver lining - i save a fortune on shampoo :)

Got into the hospital this morning expecting my mild chemotherapy before i started my new ABVD treatment next week.
As always though things didn't seem to go that way.
My doctor was away (again) and it seemed that the other doctor we had to see had written me up for ABVD this week. He also sent me for a heart scan that also wasn't planned.
To be honest, i didn't need it. I thought we'd just come in for routine treatment, then we get loaded with everything else. More stress that wasn't really needed and for the first time ever i got really pissed off.

The doctor's eventually sorted it and i got given my normal chemotherapy - ABVD starts next week as planned.
I was so glad to get home today. I've got a nice day to rest tomorrow and then it's off to London for the weekend.....frankly i can't wait :)

P.S I've been getting people asking me about getting a regular update of my blog. If you scroll to the bottom of this blog you will see something that says "Subscribe to: Posts (Atom)" You can subscribe to the blog that way and you will get the updates sent to the computer under your favourites. If you aren't computer literate i can also send an update to your email address and it's all easier for you, just let me know :)
Hope that helps!

Bring It On!

I told you i'd update with the doctor's phone call, so here i am :)

He had the meeting today and phoned to confirm the ABVD treatment is definately going ahead.

After weeks of waiting and not knowing, something is finally going ahead.


As to whether it will work?
That's another thing we will have to wait for.
Let's just hope the old saying is true,

"Good things come to those who wait"

Why do all good things come to an end?

How time flies eh?
I can't believe we have entered June already. Only seems like yesterday when i heard my cancer had returned and yet that was four months ago.

What can i say about today?
Still didn't get any news that was definate and it seems that now in reality, i don't think anything is definate when it comes to this type of thing.

Finally saw my actual consultant this week and he informed us that the major meeting with all the doctors and nurses, that was supposed to be on monday, didn't happen.
This once again means that nothing definate has been planned.
The meeting is rescheduled for this monday and the doctor will phone me and let me know the outcome.

The most likely action now is ABVD the treatment i spoke about in a previous post. The doctor has wrote me in to start recieving it in two weeks time, whether it will go ahead or not i won't know until Monday.

Radiotherapy has come back a no-no. The radiographer is reluctant in giving me any treatment at the moment as he is anxious of the outcome. I had a funny feeling this wouldn't go ahead anyway.

The ABVD treatment takes 6 hours and i am hooked up to a drip and given the drugs intraveniously. I suppose the upside is that i won't be staying in hospital for days on end.

It's still waiting around now really. At least we near enough know that the ABVD is definately going ahead, just got to wait until monday for definate.
I will update here then and let everyone know.

As for the good things coming to an end?
I've just had the greatest time ever in London and it seems as always it ended too soon. Everything was perfect and i hate that feeling of returning home from something that awesome - it feels like you were never away. Kind of like a world away from what i'm used to.

Shame though really, as in some ways my cancer has been a good thing. I can't really explain it but it has changed me for the better.
Ironic though that if this cancer's been a good thing, why hasn't it come to an end yet?

Laugh Out Loud - Though it's not really funny!

Once again back in clinic this week for a shot of my regular chemotherapy drug Vinblastine.

Apparently one of the doctors has decided to increase the rate of it so i will be even more exhausted than i usually am - great!

No real news this week as my doctor has gone on holiday for a week, the lucky git!
So i'm left here waiting once again and won't find out anything 'til next week.

I had to get checked over by another doctor however as i have had a cough and cold for the past week. She says i've most likely got a chest infection so i've got to take cough medicine, YUCK! Lol!

Someone said to me today,
"Amy, how come you are always smiling when like the worst thing is happening to you?"

And i just laughed. I told her that if i didn't laugh, i would cry you know? I don't see the point of moping around feeling all sorry for yourself when you can't really change anything by doing that. You've just got to go ahead and fight it, oo and keep smiling :)

Catched up with the legend of a macmillan nurse Claire and had a laugh and joke with her. She's brilliant!

Apart from that nothing really happened i feel kind of lousy today actually, i think it's just the cold and everything.....oooh and the fact that my guinea pig died today.
Bless his little heart, the poor thing.

Oooo and my flippin' hair has started to come out. The doctor near enough promised that the chemo i'm on wouldn't make it come out,but obviously it has.
It's coming out quite a lot but i'm doing well at covering it with my remaining hair at the moment - if it comes out anymore i might just have it shaved off again, lol. BALDIE! BALDIE! Haha! So if you have any spare hats lying around you know where to send them!

I am hoping i will finally hear some news next week and that the doctors have come to a decision, i will update here as soon as i have any.

Until then, keep smiling people. It could brighten someone's day :)

So Much For My Happy Ending

Wow, where to start this week. Everything seems to have come at once and i've got lots of new information.

I wasn't due in clinic today for treatment but i had to go and see my doctor anyway so ended up booking in.
Earlier this morning i was sent for a chest x-ray to see how all the treatment is going and if it's done anything to the tumour....

Had it? ......Not exactly

The doctor explained that the chemotherapy i was taking had stopped the tumour from growing any bigger but hadn't made it any smaller.

He then gave my brain an overdose of information as he went into the different things he has planned for me next....

1. Fortnighty Vinblastine
This has been given the go-ahead at the moment and i'm starting with it again next week, same old same old i guess. Not as bad though if it means only fortnighty trips to the hospital

2. Radiotherapy
This is another option the doctor was looking at, but he has yet to hear back from the radiographer. Frankly i don't think this will go ahead, they had to stop it last time.

3. ABVD
This is the most complex one of them all. It consists of four strong chemotherapy drugs that i will have fortnighty in the clinic. They have to be given over a period of 5 hours so i will be a day case patient. Not many side effects to these apart from the worst one i guess....hair loss. Which once again means that if this goes ahead i will lose my messy mop of red hair for about the fourth time, gutted!
The doctor is not sure about this option yet either and is waiting to hear from his colleagues around the world. Even the most skilled cancer doctors are baffled with my case, like i've said before "I'm worldwide famous, but for all the wrong reasons"
I'm there special case - which probably means feed her any drugs as we don't know how it works.

So those are my three options - i have to go back in a few weeks to see if the doctor has heard anything about where to go next...joys!

Stuck once again in another rut, i just wish they'd get on and decide what to do with me next. It's the constant waiting and not knowing that is the worst.

Anyway will update again next week :)
Thanks for reading!

If One Door Closes Does Another Open?

Went into clinic this week as usual for another dose of Vinblastine.

Finally managed to see my doctor and he had heard back from the surgeon - the surgery is out of the window.

Typical.....

The surgeon explained he didn't want to attempt any surgery as it would probably do more harm than good, which i suppose is a good enough reason.

Doesn't really help me though....i'm stuck in another rut again.....don't know what is going to happen next.

I've got to go back next week, not for chemotherapy, but for a chest x-ray.
This is to see if the vinblastine has been working and the outcome of it will help doctors decide what to do next.
If the tumour has responded to it then i will most likely continue with the vinblastine, but if it hasn't? The doctor doesn't know yet. I don't think they have any clue to be honest, stupid rare tumour hehe!

Aside from that nothing else was really mentioned, apart from the fact he is still waiting for a reply from a radiotherapy doctor to see if there is any chance of that.

Kind of a let down once again. Don't really know if it's bad or good news that the surgery can't go ahead. It's good in the fact that they are not risking my life attempting it and also bad as they don't have any other options at the moment.

Just have to wait and see really. Wow i seem to use that word so often when it comes to talking about my treatment......waiting



I've just had the best two days ever as well!
Me and my mom had our trip to London and it was amazing, just as i hoped it would be.

It was great to just get away from everything, have a proper rest (though we hardly got any rest at all!)

Again went to see a musical and this time however we day ticketed for it. This is when the box office releases 24 front row tickets every day for a discounted price.

Only problem?
You have to queue for ages in order to get them. The box office opened at 10.....we were queueing from quarter to 6 (and yes this is in the morning lol!)

Four hours in the dull weather, sore legs from the walking and a cold to match, but was it worth it?

You BETCHA!

We sat front row dead centre and it was the best thing ever.
The actors were amazing and their voices were mindblowing.
Saw everything in so much detail...it was seriously breathtaking.
Never had an experience like it before and probably never will again. Was amazing! 16/05/07 A Day To Remember :)

Everything is so expensive in London though, it makes me wonder how people manage to set up home there....i can see why you have to have a really good job! It cost me a fortune just to get there and sleep over for one night!

Shame we had to come back, seems like we were never away.
Kind of like a snap back to reality, back to the real world again.

Ahh well life goes on eh?

Will update again next week, once i get the results of the scan

Same Old Story?

Wow, what a weird week it's been.

Ever had one of those days where everything seems to go wrong?
Well i certainly had one of those today.

Got into the clinic this morning to be greeted with tonnes of people...all waiting to be seen by a doctor and recieve treatment.
I've never seen so many people there on a thursday for absolutely ages.

We ended up seeing a different doctor today who didn't seem to know about much that was going on with my treatment. She had no idea if the surgeon had got back to us and didn't seem like she knew an awful lot about it....kind of disappointed i didn't see my usual doctor.

My blood count was fine so i was given the go ahead with the vinblastine.
After what seemed like forever, we finally went in to have it.
Took the doctor four attempts to get a cannula in my veins....very annoying, not to mention painful.
I had the chemotherapy eventually and could finally go home.

Ooo and then we missed the train....just my luck.

Overall a kind of sucky day today. Nothing seemed to go right and we still don't have any more news on the surgeon. Have got to return next week for another lot of vinblastine so hopefully the other doctor will be back.


On a more exciting note....

I am off to London in a few days for a little break with my mom.

It's going to be great and i'm super excited! Just a chance to get away from everything...even if it is just two days :)

I'm praying for good weather though, it doesn't seem to be that nice at the moment.

I know we're going to have great fun, lots of laughs and brilliant shows to look forward too.
Also heard a few new riffs in a couple of songs i love so i'm praying for them tooo, haha :D

Will update next week and let you know how i get on with the doctor, fingers crossed he will have some news!

Ooo and check this video out if you have time....
It was when me and some of my friends from the ward went to a conference called Find Your Sense Of Tumour (FYSOT)
It's where teenagers with cancer come together from all over the U.K and abroad to share experiences and just party, party, party :P
We always have an amazing time there and i always come away with fond memories, great new friendships and knowing more about my cancer and how it affects me and other people :)

And Because I Knew You......

Once again i find myself hearing those dreaded words as i ask a nurse how one of my friends from the ward is doing...

"Amy, i'm afraid they are no longer here."

I think to myself, why them?
What did they do wrong.

Then i realise i have to carry on fighting as i know they would have wanted me to.

See it seems to be a common occurence now....

When i first ever started treatment on the ward i got put on a bay with other teenagers my age. I met some lovely people there and we became close friends. We sort of made a silent pact to keep on fighting and try and beat this whatever happens.

Of the seven people i knew at that time, only two remain today......Megan and me.

Can you imagine what that feels like?
Making great friendships and then wondering how long they will last.
I'd certainly give my life anyday if it means that any one of these people could come back, they didn't deserve to miss out on the rest of their lives.

Michael, i know you have gone to a better place and God is taking great care of you up there so you don't have to worry - RIP buddy.

Yet through all this sadness and loss of another friend i find myself still smiling, knowing that they would have wanted me to stay strong.

Not only am i fighting this battle for me now, but for all my team mates i have lost on the way - and there is no way i am giving up easily.

On a less sad note, i went again for another dose of Vinblastine yesterday.

Spoke with the doctor and he told me that the scans and pictures have been all posted off to the surgeon at Heartlands hospital, just got to wait and see what he decides.

I find this sort of waiting unbelievably difficult.

Knowing my future is in the hands of a complete stranger....

I still find myself stuck, not being able to plan anything that far into the future as i have no idea when any of my treatment is going to happen.

Yet i still plan things in the hope that i can go - probably only to be let down again.

A postive note though...

Me and my mom are off to London for a few days - just to escape everything that's going on at the moment...proper chill time.

This is something that is definately going ahead, we have planned the chemotherapy round it this time.

Gives me something to look forward to

I've got to have the weekly Vinblastine for another 3 or maybe 4 weeks and then another scan to see if it's done any damage to the tumour - fingers crossed!

Will update again as soon as i find out any information about the surgery or if anything interesting happens inbetween.

Until then...

“The happiest of people don't necessarily have the best of everything; they just make the most of everything that comes along their way.”

Major Life-Threatening Surgery? Too much to take in!

So yeah, went on thursday for my fourth lot of Vinblastine.

I was taken into the consultant room to speak with my doctor and was yet again introduced to more student doctors. I know they mean well and are only trying to learn but it's annoying when you are about to hear the results of tests and want to ask the consultant personal things......rant over :P

Anyway, the week before i was sent for a routine chest x-ray to see how my tumour was reacting to my new doses of vinblastine and the results were not bad, but not amazingly good either.

It showed that the tumour hadn't shrunk at all but at least the good thing is it hasn't grown anymore. This means that the chemotherapy i'm having is stopping the tumour from growing but isn't killing the cancer cells off.....not really any change from last time.


One extra thing.....

When i first ever got diagnosed the doctors explained how difficult surgery would be as the tumour is attached to my main artery and also my heart - basically saying it was a no-no.

Now however it seems they have changed their minds.
My consultant is now sending my scans and x-rays over to a specialist surgeon at the local adult hospital to see if he would attempt to take it out.

He didn't want to say much apart from the fact that it would be major surgery as it's so close to everything keeping me alive. They wouldn't be able to take the whole thing out but they want to try and take as much as possible. They then want to try and start me on another course of radiotherapy in the hope it will kill the cancer cells left.

One setback?
We have to now wait and see if the surgeon is willing to take on such a big operation.

I've got a funny feeling my consultant was holding back on a few things. My surgery would take numerous hours and the slightest slip up could be fatal.

Kind of scary really

So yeah, for the minute, we are waiting on the surgeons decision, could take a few weeks.

For the time being i am still taking weekly Vinblastine treatments in the hope it will keep the tumour at bay for now.

Will update this as soon as i find out any more news.

The doctor didn't explain whether there were any other options apart from this surgery....i sure hope so, at least then we will have something to fall back on.

I don't know whether i want this surgery to go ahead, but then again i think it's the only way forward.

It's either risk my life in that operation or not risk my life and end up loosing it anyway if nothing else works.

I think this is where the real fight is going to begin....

From Diagnosis To Where I Am Today

Hey and welcome!

Thought i'd start way back in the beginning and tell you about all the chemotherapy, radiotherapy and various other treatments i've had up to now.

I was first diagnosed way back in May 2004 after a month of constant tests, scans and a biopsy operation.

The tumour is a type of Non-Hodgkins Lymphoma though the proper name for my exact type is Anoplastic Large Cell Lymphoma. It's a very rare type of Lymphoma and there isn't a set type of treatment for it, i was sort of like a guinea pig where the doctor's decided to give me whatever they thought would work.

I started off with a six month stay in hospital where i was given a course of mild chemotherapy. I can't remember all of the drugs i had but Methotrexate sticks out at me for some reason. After the initial six months of chemotherapy i was sent for a scan to see if the tumour had shrunk or even disappeared, it hadn't. The tumour hadn't changed in size at all and the doctor's explained that it was very unusual to not see any change at this point.

They then suggested a more higher course of chemotherapy. I had another three months of chemotherapy drugs that seemed as though they were working. I became very ill from the drugs and had to stay in hospital for a further two months. The muscles in my legs wasted away and i was isolated away from the rest of the ward. Noone, not even the doctors, could explain what infection i had taken on. Sure enough i came back fighting and on christmas day 2004 i managed to get out of the hospital and back home. It was only one night but wow i had waited so long for it, i don't think i've ever wanted to go home so much in my life.

Further tests showed that the tumour still hadn't shrunk to what the doctor's wanted. They explained that the tumour was near enough inoperable, as part of the tumour was attached to my heart and the other to my aorta (the biggest artery in the human body)
They did a few biopsies in between treatments to try and take away as much of the tumour as possible, but they could never remove it all.

In February 2005 the doctor's suggested another plan of action - Radiotherapy. I was given a course of 23 lots, but only got as far as 13. The consultant radiographer told me that if they carried on it would damage my lung and i would end up a respiratory cripple.

Another plan of action washed down the drain.

By now, doctors were running out of ideas. My consultant was in contact with doctors all over the world, trying to find the best treatment for me.
He suggested a new drug that had been linked with my type of cancer - Vinblastine

I was told it was a mild chemotherapy drug and had hardly any side effects, meaning my hair would finally grow back.
I went on to have this drug for a further year and following this i had another biopsy operation.

Finally got the good news that the part of the tumour they did remove was dead, which most likely meant the tumour that was left in me was dead aswell.
The doctor said i should carry on with the vinblastine for a few more months just incase there are any cancer cells still present.

In November 2006 i was finally put into remission. This is a period of 5 years where you are monitored closely as the cancer is most likely to come back during these crucial years.

My follow up scans in the following months showed no change and the tumour that was left seemed to be well and truely dead - in other words, scarring tissue.

That was until last month...

I started to develop a cough that wouldn't go away, i had it for four weeks and the doctor sent me for a scan only to have my worst image relived.....the cancer was back

After only three months of remission i was being told i'd have to relive my journey all over again and treatment should start straight away as to stop the tumour growing any bigger.


So here this blog ends and the next one begins. I will keep this up to date with any new changes, treatments or ideas that the doctor's come up with next.

My future is up in the air at the moment, noone seems certain of what it holds for me.

All i know for sure is i will keep on fighting this, no matter what happens