30 July 2007 - snapshot from hospital

This is a letter I found in a notebook which I wrote on 30 July 2007 but never sent. It was addressed to my work colleagues in Maynooth:

Hi everyone,

Thanks so much for all your good wishes by text and phone and for all the letters. They mean a lot. I had a good giggle recently when I received a text from Noreen which said "Hang in there Brenda, it will be all uphill from here..." I assume that she meant downhill!

I am improving every day little by little, bit by bit. I am free of all drips and tubes. They are removing the central line from my neck/chest either today or tomorrow. Today they mentioned the H word (home) for the first time since I was admitted. The end of this part of the treatment is in sight. I will be four weeks in hospital on Wednesday of this week. It's a long time. I can't wait to get home to Bryan and the kids, as well as to familiar things. I can't wait to get outside - even if it is raining. I know I will be on a very short leash from the hospital for a while and that I will have to take it slowly but it is great to be this side of the treatment.

I am moving around a lot more and building up strength. It is amazing how many people in here are willing me to get better - the doctors, nurses, nursing assistants and the catering ladies. I can't ell you the number of the times that I have been stopped in the corridor by someone to say 'great to see you looking so well'. It really does my heart good. Some of the nurses who cared for me at my lowest ebb have come back after a week off and they can't believe the difference in me. I am starting to look like myself again.

I had some wonderful prayers said in my room a few days ago, by a nun who is a member of the chaplaincy team. There were some days when I was too sick and drowsy to know that people were around but the chaplaincy team were there for me, even if I didn't know it.

Bryan (hubby) has told me some of the silly things I did and said when I was a bit out of it from medication. He said he was leaving me one evening and I said to him: "You don't expect me to drive like this, do you?" Another friend of mine came to visit and I was in the middle of a sentence and I just dropped off to another world. There are other things I did but I am too embarrassed to share them now.

I thank God for giving me the strength to get to where I am now. I could not have done it alone. It was very hard for Bryan, my Mum and others to see me at my sickest. There was nothing they could do except hold my hand. Some days I couldn't talk at all and it must have taken all their strength and composure to sit with me without caving in.

Thankfully, all that is in the past for now. The days ahead are looking brighter at last. I still have a few challenges to get through. I have to start eating more and it is very difficult. My temperature needs to stabilise also, but hopefully that will happen once my central line goes. I have been told that it will be weeks, months before I fully recover from the chemo and transplant.

I know that once I am home I will do better. I will thrive in my own surroundings so as far as I am concerned the sooner the H word is a definite, the better I will do.

I am going to sign off now. I just wanted to tell you how much better I am doing.

Thanks again to everyone who wrote to me, texted me, called me and visited. I was delighted to see Marie a couple of Sundays ago - it was a lovely surprise.

I will be in touch soon and hopefully the next time I write it will be from Newbridge.

Talk soon.

Brenda
XXXXXX

[This letter was written during week four of the stem cell transplant process which I went through in July/August 2007. ]

Below is a picture of how I looked on 15 July - mid way through the process. So it puts the treatment in context. It was brutal]

This is me halfway through the transplant



My first day home from hospital after transplant

Two months after the transplant

NOW

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........

Ends

Emma Tobin
Age 13

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
Lilt
Lucozade
Coke
Fanta
Club Orange
Ginger ale
Appeltizer
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

Pearfection
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.

B

xx

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!

B

xx

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.

Brenda

18 March 2011

Friends on Facebook?

I reckon there are several different types of ‘friends’ that people have on Facebook.
The first type are those that you have never met, will never meet, have nothing in common with, have never spoken to, will never speak to, have no work connection with – these are the ‘friends’ that you agree to be friends with because maybe you want people to see that you have loads of friends. These are the ‘friends’ who make it their daily goal to have as many ‘friends’ as possible. These are non friends!

The next group of friends are those that maybe you have a loose tenuous connection with through a common interest – maybe it’s politics or the x factor, maybe it’s the Apprentice or something else like that. These ‘friends’ are people who have posted comments on a page that you LIKE and you have responded and then somehow you have ended up as ‘friends’. These are another group of ‘non friends’.

Next up we have the ‘friends’ that you know through work or clubs and societies that you may be involved with. It is likely that out of this category you may have one or two actual real friends that translate into real life. The rest I am afraid are ‘non friends’.

The school ‘friends’ who have re-connected with you through Facebook are the next group. Some of these people you would sooner not have re-connected with but you felt unable to ignore the friend request in case you upset them and you might run in to them in the next few years at a school reunion. Again, out of this group maybe there are one or two people that you actually chat with, that you actually genuinely liked at school and that you are happy to re-connect with. The rest are ‘non friends’.

Then we have family members. I am lucky enough to have a good few of my family members on Facebook and it makes for much cheaper connections with my sister in the UK and with cousins in America. These are genuine friends and they are the ones who will comment on what you do and how you are and will genuinely know what you are talking about. However, even in this group of ‘friends’ there are some who you really have no interest in – maybe you have minimised them so you don’t see their endless updates and nonsense posts, but you don’t want to disconnect with them in case it causes problems in the wider family circle. More non friends I am afraid.

Finally, you have your actual friends and if we are honest, for most people this group will amount to no more than maybe ten or twenty people – that may even be overly generous. These are the people who text you, call you, connect with you, send you a real birthday card without having needed to be reminded by Facebook. You meet up with them regularly and they know you inside out. These people are your FRIENDS.

We read this week about two very different sides of the Facebook ‘friends’ coin – one tragedy where a woman posted an update saying she had overdosed. Not one of her 1,000 plus Facebook ‘friends’ made any effort to help her – so did her friends belong in one of the ‘non –friend’ categories? Clearly hey did or maybe she would still be alive.

On the other side of the Facebook ‘friends’ coin we have a woman who is being helped financially by Facebook ‘friends’ following a cry for help after her husband’s departure left her in financial difficulty.

So next time you feel a twinge of jealousy because someone you know has 2,250 ‘friends’, ask yourself how many of these are real friends and how many belong to the non friends category?

P.S.

I have 152 ‘friends’ on Facebook!

Brenda Drumm

Cackelkine by Emma (age 13)

Guest post by my daughter:

CACKLEKINE by Emma Tobin

Age 13

I

I sat down on a cracked dusty pew in the abandoned Church in Edenville and bent over to examine my shoes while fighting back tears. I watched with fascination as they dripped one by one onto the floor forming a small puddle. My headache drummed a heavy beat into my skull, duh – dum, duh – dum.

The sound of a giggle shattered the silence around me. It began low, just a chuckle, but quickly escalated into a hysterical cackling that bored into every crevice of my brain. I stood up slowly, backed down the aisle and scanned the rows of empty pews. The laugh stopped as I desperately searched the mouldy interior of the Church for the source.

“Sweet, oh sweet human blood”, a voice too close to my ear for comfort said lustfully.

“Who are you? My voice sounded strange to me, too low and faint.

“Don’t worry, it won’t hurt a bit” the voice said.



I spun around and stared into the cold, clear, blue eyes of a hideous ……..thing, crouched cat-like on a nearby pew. It was wearing a straightjacket, battered prison combat pants and sandals. Its jagged, yellow teeth gleamed in the sunlight that streamed through the stained-glasswindow, and blood dribbled from its chin.

“They thought they could keep me locked up”, it mumbled as it approached me. I stood there, just watching, not running like I should have. Its wicked eyes seemed to stare right into my soul. I tried to scream, but I could only manage a squeak as I crumpled onto the cold ground, sapped of all energy.

“They put me in this”, it squirmed in the straight- jacket, “but they underestimated my feet”. It showed me a sandaled foot, with long sharp toe nails that looked like blades.

Then it said, “Now I will feed on the bones, flesh and blood of a human”. A strange calm had descended around me and I watched with resignation as it lifted up my pale arm and bit into it. I screamed so loudly it flinched. I squirmed and lashed out at the elongated mass of shadows that my world had become. The only thing I saw clearly was the drips of blood that were escaping from its mouth as it sucked my blood.

Suddenly it jumped up and staggered away from me. My world came back into painful focus.

“You, you, you”…..it said over and over as it staggered to the door. It made it half way down the aisle before it collapsed. It shook, convulsions wrecked its body. Then it exploded and blood splashed the stained glass windows as bits of it fell around me like warm, sticky, confetti!

II

Next thing I was aware of was footsteps coming towards me. My vision was blurred but I could just make out four figures dressed in crimson garments walking in tight formation up the aisle.

As I watched, one broke off and ran towards me and I shied away when I saw the glint of the blade that he………no she, carried.

“Rayne, I think I will need your help with this one”, she shouted back to the group.

My vision finally cleared and I saw a boy break away and walk towards me. “Who are you?”, I asked, feeling dizzy as I spoke. He ignored me and reached out for my arm. I slapped his hands away, hissing angrily in a way I never realised I could. “Ssssh”, he said.

He knelt down and reached out to touch my arm. I looked up at him, transfixed by his eyes which were every colour of the rainbow. I felt myself going limp as his cold fingers probed my wound. “Lorenzo bit deep”, he said.

“Don’t dawdle, just get the poison out, preferably before the human dies”, a new voice says. I felt a stab of indignation - who was he to call me human, he was too, wasn’t he?

“I need to know the extent of her wounds before I heal them”, Rayne hissed. “ Why don’t you two go clean Lorenzo off the walls or something and leave this to me”

Rayne suddenly raised his hand and hissed – “I hear human police”.

“Great”, the wall cleaner said happily, “let’s leave her for them!”

“What?”, Rayne exclaimed angrily, “ Have you seen her cuts - they have Leecher poison in them. She is going blue”.

A pair of ice-cold hands lifted me from my pool of blood. I cried out in pain and a voice cooed in my ear – “It’s okay”. I felt myself losing consciousness. Who are these people, I wondered numbly. Who………..

III

It took a huge effort for me to open my eyes. Rayne was unwrapping a blood-stained bandage from my arm, which was a light shade of blue. Seeing my eyes open, he smiled tentatively at me. “I fixed you up, but your arm will be blue for a while”, he said as he finished dressing my wound.

“Where am I”, I asked.

“Cleo will explain everything - she is waiting for you at the fire, Rayne said. I noticed how cute he was.

Rayne lifted me and as he did, I looked up to the sun as it filtered through the canopy of leaves overhead.

Rayne set me down gently at a crackling fire and sat down at the opposite side of the fire.

A girl of about 16, was sitting at the fire. She had long blonde hair and blue eyes and she smiled at me when I looked at her. I guessed she must be Cleo.

Cleo turned to me: “I am sure you have a lot of questions”, she said.

I blurted my questions in quick succession:

“Where am I?

“What was that thing?

“Why did it explode?

“Who are you people?”



She didn’t flinch as she replied:

“We are in a forest just North of Edenville

“That THING was a Leecher.”

“Like a vampire”, I asked.

“No, a Leecher is mortal like us but it feeds on human flesh, blood and sometimes souls.”

“Souls!”, I exclaimed, “then how come I am not an empty shell. Did it not get my soul?”

“No, but it did get a good deal of your blood which is why you feel so weak”, she said.



She paused and locked eyes with Rayne, who shook his head. I wondered what was going on. That glance between them must have meant something.

Cleo spoke again. “As to who we are we are known as the 22nd Cell of the Metro Police. We have powers which have been handed down since the beginning of time”, she boasted.

“Oh, that’s er ….. nice”, I stammered.

Cleo gave me a withering look and said “and you Sasha Hope, are one of us”.

As she spoke a blinding light shone out from her eyes and two beams struck me, one on my forehead and one to my heart. I screamed in shock and pain and tried to roll out of the way but a strange sensation pulsed through my body, a feeling of immense power.

“WHAT DO YOU MEAN?”, I yelled!, “AND WHAT THE HELL WAS THAT?

“You are a pure blood” Cleo said, “and that is why the Leecher exploded. They can’t withstand blood so powerful. You are bound to the Metro Police. You are one of us!”

I shocked her I think when I smiled and said: “When do I start?”



THE END