Monday, March 28, 2011

Guest post by Emma: The Boy Who Cared

When I was young I was known as the oddity, the freak of the playground. I generally wandered its borders with my head down and my shoulders hunched, as if carrying something on my back. I suppose it was because I thought differently than everyone else - I was real Looney Lovegood of the class.

So it came as a great surprise to me when one day a boy, that I had never noticed before, came over to ask me how I was. I bristled defensively at first, sure that it was some sort of dare to touch the freak or something. "I'm fine", I replied snappishly. The boy didn't poke me or tease me, he just smiled, as though he knew exactly what I was thinking.

I tried to ignore him, but that was hard with someone following me around, talking animatedly about this and that........ So slowly, grudgingly I began to talk to him.

Within a week we were inseparable, even when I escaped into the boys' toilets from the evil eye looks of the 'popular group'. I had been laughed at for that too, but he hadn't minded. He had stood loyally by me as the teachers bullied me, teaching me my first swear words when he referred to them. I don't know what I was thinking then, but I should have known that it was far too good to last.

Things continued on like that for months, all the way through first class. Near the end of the year however, I noticed a change in him. He wasn't talking as much and once I caught him with tears in his eyes.

One day I heard someone sobbing in the boys' toilets. I had scanned the yard for teachers but they were busy with some sort of fight on the other side of the yard.

I slipped silently into the toilets and over to the door from where the crying was coming from. "Is that you?", I asked gently. The sobbing stopped abruptly. "Emma?" came a very hesitant call from behind the door. "It's me", I said softly. The lock clicked open and I went into the cubicle. He was sitting on the toilet seat with tears running down his face, his eyes full of a sadness too advanced for an eight year old. "We're moving away", he choked. I swear at that moment, my heart stopped.

He's long gone now of course. His face faded and blurred in my mind. His name is a numbing pain. I will always remember him, even if I live to be a senile 100 year old, my friend - the boy who cared........


Emma Tobin
Age 13

Saturday, March 26, 2011

Tutti Frutti

I found a journal entry that I wrote in August 2007.

I was in hospital having a stem cell transplant and I was off all food and drink.I started to crave fruit juices and favoursome drinks. Some of the ad's on TV used to really set my cravings off. I could have drunk whatever I wanted but it woul only have stayed down for seconds.

I used to take sips, taste the drink and then spit it out into a basin which I kept with me all the time. I was like an addict craving new and better tastes every day.

I had 7-up
Club Orange
Ginger ale
Soda Water

I would last a day of two mouthwashing each of these for the taste and then I would feel sick at the thought of them. Then my Mum started to make dilutable cocktails for me with two types of dilutable drinks - she would mix them and put them in the freezer for me so as they would be nice and cold for me when they arrived to the room. I was confined to the ward as I was being nursed in isolation - my immune system was at ground zero. It was July and the room was really hot. I was not allowed to open th window or the door. The taste of a cold, icy drink was just heaven, even if I did have to spit it back out straight away.

Then a lot of the soft drinks started to sting the inside of my mouth so I took to drinking club source which had a high water content and which I was able to tolerate. \At one stage I put a call out by text to people to see if they could source me some bottles of Club Source - it was hilarious really and so many of my family and friends looked for it and i had three loads delivered to the hospital for me. It was wonderful. On one of the bottles I noticed a competition to invent a new flavour of club source. Even though I was really really ill, I decided that I would invent one or two and get them posted off.

These are the new flavours that I came up with:

Gushing Grapefruit
Grapefruit, Blood Oranges and Mango

Passion Crush
Passion fruit, peaches and pinepple

Pears, Apples and a touch of lime

Looking back at how sick I was, I can't believe that I was doing this sort of thing. I suppose I had a lot of time on my hands. I sent these ideas off to the people at CLUB but I didn't hear anything back nor did I ever see any of these flavours on the shop shelves.

I wrote these flavours down in a little notebook that I wrote in the whole time I was in hospital. I was looking through it today to find the flavours I created and I found the following random lines which I wrote about fruit:

Great gushing grapefruits, all tangy and tart
Oh how I'd like one as a morning start

Passion fruit and pomegranates
blueberres to make you anything but blue

Outrageous oranges all squirty and sweet
Magnificent mango

Glorious grapefruits all tangy and sharp
succulent strawberries, a rich ripe red

I think you could say I was slightly obsessed! I even used to dream about fruit.

My obsession with fuits and juices continued the entire time I was in the hospital and for many weeks afterwards. I think the body craves what it needs and sometimes what it can't have.

Thnkfully I can have whatever fruits and drinks I like now. But each morning when I pouring myself a glass of juice or biting into an apple, I am very grateful to be able to tolerate them.



Monday, March 21, 2011

It's not just 'having chemo'!

I know this is the second blog in a row about cancer so I promise my next one will be on something else! LOL!

Everyone knows someone who has been touched by cancer. Everyone knows someone who has had chemo - but there in that short sentence lies so much sanitising - 'having chemo'. It's rarely explained, rarely delved into. Yes we have seen Hollywood actors and actresses bent over toilets vomiting as they play the role of someone with chemo!

But there is so much more to 'having chemo' than hanging your head over the toilet bowl vomiting.

I had two different types of chemo in 2007, three actually:

  • Type 1 - oral chemo in tablet form
  • Type II - liquid low dose chemo
  • Type II - liquid chemo equivalent to setting off a nuclear bomb inside my body

Type 1 was a doddle, I wasn't sick, didn't lose my hair, was able to eat all the time I was having it.

Type II was  bit more challenging. I vomited for a few days, had nausea and discomfort, and I was off my food for about a week. Not too bad on the grand scheme of things, but it was frightening to lose control of my body for a while.

Type III was like someone setting off a nuclear bomb inside me.

It was the worst experience of my life. I received the chemo over two days, in through a line in my chest. Within a couple of hours of the first dose I was vomiting violently. I went on vomiting for four weeks. I did not eat for 4 weeks. I could not swallow water or any liquids for four weeks. This type of chemo is known as high dose chemo and it had to be high dose as it had to kill everything in the bone marrow to allow my own stem cells to re populate the marrow after my system was attacked by multiple myeloma.

But type III chemo did more than just make me vomit and stay off my food:

I had explosive diarrhoea for four weeks
I had a hemorrhage into both my eyes
I had a hemorrhage from my womb which went on for days
I had a nose bleed which went on constantly for almost 3 days
My mouth broke open with sores and peeling skin, my lips cracked, my body was swollen and engorged from all the trauma. My entire digestive tract was in trouble.
I could not speak for a couple of days as I did not have the energy to form the words.

I banned all food programmes and talk of food. All food trays were banned.

I craved drinks, going through so many different types - lilt, 7up, ribena, appeltiser, coke, fanta - but I could not swallow any - I would sip and swirl and spit and this went on for 3 weeks.

The first day  allowed some liquid down into my stomach, it came up immediately.

It was the most challenging time of my life.

I had read all the materials but nothing prepares you for these sort of effects.

Nothing controlled the nausea and vomiting. Nothing stopped the diarrhoea. For a time I wore nappies!

I had constant anti-sickness meds being put in through my central line, an anti nausea pump in my hand and my stomach, antibiotics all the time, minerals and nutrients, food, glucose, anti fungal meds were all being pumped into me to treat the side effects and to prevent infection and pneumonia.

Finally a day arrived where I did not vomit, did not bleed and did not have diarrhoea. It was the most amazing feeling in the world.

Eventually after four weeks of intensive treatment I was allowed home - I was four and a half stone lighter, I could barely walk from one room to the next, I could not lift my 2 year old. I was short of breath. I was nervous. I would throw up without any warning - once when I was standing talking to a neighbour out the front I vomited all over the place. I was unable to eat and lived on half a yogurt a day as that was all I could tolerate. After a few days I was able to manage a sip of soup. That was August 2007.

My ability to manufacture saliva had been damaged so it was October 2007 before I could have a biscuit or toast or bread. I lived on a very limited diet. I was emaciated. My bones stuck out and I felt very ugly.

I lost my hair but that was a minor detail in comparison to everything else.

The nurses and doctors were amazing - they were angels. My family support was amazing and I could not have done it without them.

I don't remember being in pain, but at times it was a painful experience
I don't think I suffered, like some people are suffering in this world, but at times it was hard and I thought I could not hang on.

So 'having chemo' is not just a matter of hair loss and a head in the toilet - it is so much more.

I am out the other side and thank God my chemo and stem cell transplant did the trick. I am in remission. My remission won't be permanent and I may have to have another transplant. In a way it will be better next time as I know what I have to face, but in a way it will be worse, because I know what I have to face!



Friday, March 18, 2011

A Year to Go

Do you ever wonder what you would do if you were told that you had a year at most to live?

Would you sell up and travel the world, seeing all the sights that are on your to-see list?

Would you curl up in a ball and just let it happen?

Would you find all the people who you have fought with, are still fighting with, have hurt in your life, so as you can apologise to them?

Would you go sky diving, parachuting, hot air ballooning or some other mad activity that you had always been too scared to do?

Would you accept it? Would you deflect it and stay in blissful denial?

About 4 months into a diagnosis of cancer I was in the attic looking for some photos and I found a medical dictionary. I decided to look up my cancer - multiple myeloma - too see what the book would say. I read along, yes yes I know all that - it's a cancer of the plasma cells of the bone marrow.......yes yes I know! Then I read the last line which said: 'People usually survive for 3 to 5 years after diagnosis'. I almost fell through the attic hatch. What? WHat? WHAT?

I could not believe that I was looking at just four and a bit in this world. Why didn't the doctors tell me? I asked them repeatedly about my prognosis. I asked one of them if I was going to die. In my own attic I had the answer waiting for me - I had between 3 to 5 years to live! WTF?

I almost fell through the attic door. Then I sat and just cried. What had I done to deserve this? I started to do the maths about how old my kids would be when I died - Emma would be 14 and Cathal, my little baby would be just 7! I couldn't breathe such was the panic thinking of how little time I had left with them. How would my husband cope with two young kids, how would my family cope and would my young soon forget that I had ever lived.

I decided there and then not to accept those odds. I looked at the publication date of the book and saw it was at least 7 years old. There had been so many advances in cancer treatment since then.

I fought
I am still fighting
I have had a bone marrow translant and gone through hell
I am here
I have met people who have been living with myeloma for 15 and 16 years - I guess they decided not to accept the 3-5 year prognosis either.

I am living with myeloma for 4 years and 4 months now. I intend to break the five year prognosis barrier and push on to be one of those living with this cancer for 10 or 20 years.

Emma is almost 14 and Cathal will be 7 in the Summer. I have no plans to go anywhere anytime soon.

I am fearful for my future at times, but I have hope and sometimes hope is all that we need.


18 March 2011