Leukemic Step Child: April 2010

Am I in eastenders - Part 2

Sitting on Plastic seats like the ones you would find in a 80's village hall, placed outside the isolation rooms. We where waiting for the Prep team to finish cleaning and stocking room 2. around us are bags filled with time passing books mags, etc. the maintenance kit for Kim hearing aids and the suitcase. We look like forlorn passengers waiting for a aircraft to a sunnier climate. My mind start wondering off to the Disneyland Paris holiday we had the year before. When Kim was healthy and the only worries were where to meet up and how long the queue to thunder mountain was. How I wished for that time to be now and not sitting on this ward.

A mix of my back pain and a nurse talking snapped me out of my daydream. she asked if I was ok Yes, I think whats happening is taking it toll. As I talk with Kim about what I was going to do, the prep team finished. Kim and I rolled and carried the bits we brought along into the room. This was the time where I took my leave as we worked out. The next time she would see me is later than agreed, but you know what they say about the best lay plans of mice and men.

The plan was. I would go to Mat's for a coffee to give Kim some privacy during the prep and installation of her central line*. Come back after an hour or so. Sort out the room make sure she is settled in. get back home eat. Do the evening run at work and then return for visiting hours with Shell and / or Pat.

As I leave the building I light up a Cigarette and call my friend Mat to see if he was in, he was as I talked to him I mutter as my back plays up again. He asks if I am Ok I reply with the stock answer of must of sleep in a funny position as I got into the landy.

I arrive at Mat's. Climbed out of the landy and head for his front door. I feel like crap, My back is really killing now and I feel so tired. I know there is something wrong, maybe my insides are complaining with the stress of it all, as it has been a stressful last 5 days. Maybe doing something akin to Irritable bowel?

Mat has 'that look' ** on his face when he see me. A slight panic tries to rise in me, but it can't I am too emotionally cream crackered for that. I ask to rest on his sofa for a min or two, as I pass a mirror my reflection is worrying. I am as white as Kim was on the fateful night 5 day ago. Oh god no, Not today, Please. I need to be there for Kim, Please NO.

As I lie on his sofa. Head on the seat my feet hanging over the brown arm rest. Mat asks if I want him to take some observations. “If you want” I could not really be bothered. Within second he is kneeling beside me with his grab bag*** Oxygen (O2) monitor on my a finger of my right hand, blood pressure on my left arm is quick time. Mat looks at the O2 monitor and grabs my right wrist of a manual pulse check.

He looks up at me with ' THAT LOOK!!! ' † and pulls out his phone. I think he has forgot we crew together and I know his looks. He asks me what my age was as he hit the 9 button 3 times. “29, Whats the readings!” I ask. He turns the equipment around. Oh SHIT, that's not good!!!

*A tube that all chemotherapy, medication, blood etc to go though. placed in the centre of chest.

** is a look that says ' I don't like this ' between first aiders in a team (or unit) without saying it

*** is that bag crews always have when they jump of the ambulance.

† is a look that says ' OH heck, this is very bad. '

Am I in eastenders? - Part 1

I was not feeling myself as I pulled out of Wem. My back felt odd, it was sore, I felt tired. Its the stress and pressure of what's going on I thought to myself as I headed back to the big gray building called my base work site. Apart from the back pain the trip back to the site was uneventful. As usual Chris Moyles and the gang were doing their normal funny stuff and as I drove along life seemed to be normal as my mind was busy with driving. Not thinking about anything but, driving and navigating a well travelled route.

I pull up at work, turn the key, the engine stops Chris disappears back to the unseen radio waves. I look at the time 0858 a bit late, thats following tractors for you. As I get out and lock the vehicle my lower back wakes up with a bit of pain. “bloody hell, I must of slept in a weird position last night” I mutter to myself. As I make my way though the busy reception area to drop in the keys. Its strange being in an area full of people but feeling alone. As my mind was somewhere else, thinking of Kim soon to be poked, prodded, tubed and incarcerated in a isolation room*. I give a half hearted thumbs up and smile to being wished good luck. If we had good luck I would not be on the way to the hospital with my step daughter.

As I load the suitcase and other bits into the landy my back gives a jolt, I mutter a few swear words. I could do without a bad back today. With Kim in the passenger seat. Everyone is jammed together at the front door, to watch Kim disappear for the next 10 days. Little did we know at the time what a day we were going to have.

I pull into a free space in the hospital car park and jump out. Digging though my pockets for 2 pound coins I mutter a few rude words followed by 'Not today'. The ticket machine clunks and beeps dropping the ticket out, the grave under my work boot crunches as I return ticket in hand to the landy. I steady myself on the tree defector**. My back is really sore, I mutter more rude words. Kim looks at me a bit confused. I comment to this look with my back is playing me up.

We enter the hospital and on the way to the ward I nip into the loo. When I came out Kim is sat on her suitcase looking like a lost child on a railway station. We carry on to the ward, the lift door closes with a clatter a pause then the lift jolts into life. Not helping my back one bit. It was sore and a bit painful but I had to carry on. I must of slept on it wrong that the only answer I could think of. The lift judders to a stop and the door slides open with a metal on metal squeak.

*soon to be know by me and kim as the cell.

** I don't call them bull bars, as they are for defending against trees there are no bulls around here.

Friday

I am sitting looking at the Venflon* as it sticks in kim's arm like the stinger of a bee, at the end of it was a drip tube redden by the blood that flowed down into her. It looked like a borg probe. My mind wanders into thoughts of borg probes, and how if they were real the nanobots could clear the luekemia cells in days. A fast and easy way to rid people of this horrible illness. But biological nano tech is not that advance. This was a wishful day dream, of a parent*, of a very ill child.

My mind carries on wandering, over the events of the last few days. The reaction of work colleagues, students, family and friends. The hard part was Kim is well know at work, the side affect of working where your step kid go to college. When you hear that students are crying at our agricultural campus, because they been told about Kim illness was hard. It was one of them moment where a quick exit is required, as I feared I would 13 mile away join in. My Colleagues and bosses where great, cover stuff that needed to be done at work as I was in Shrewsbury with a sick child.

Family was the hard part. Shell eyes had not change from being red though crying since she started as we pulled out of the drive the day after we were told, as the truth of it all started to sink in. The mother in law Pat was the same, her husband George just fussed over Kim. As their eldest the first born grandchild. Always hold a special place in the heart of grandparents. And Kim had been though so much. With her hearing problem, the regular hearing test, the faults and failure of equipment the list goes on and Kim always took it in her stride.

This time she was trying to take it in her stride, but I could see that even she was cracking at the edges. This was taking it out of her physically. And I think that she was full of thoughts and feeling she could not or would not express. Everyone was faltering at this event the was unfolding in front of us.

* IV cannula / peripheral venous line

the morning after Part 3

We are back in the consulting room. The consultant is off again with his medical waffle, about blood cells, white cells, etc. the need to stabilize her with a blood transfusion, needing to come back for more test and another transfusion in two days time, and being admitted after the weekend on Monday. Then we get the told what type it is. Acute Myeloid Leukemia (AML)

As we walked out of the room and back to the landy, Kim had a scared and confused look on her now pinkish face. The blood transfusion gave her a health look, one that did not show the true horror going on in side her. The horror that would be our life for the foreseeable future.

My mind was floating in the events at the hospital, I was emotional and overcome with the whirlwind that had been the day events. Feeling physically and emotional drained I head back home with my precious load, Kim.

I did not know much about leukemia, I knew it was a cancer of the blood system and bone marrow produced Blood cells, and that was about my lot. So it was time to do some research online*. This blew my mind, did you know there is 4 main type, I did not. Boy was that night a learning curve and a half. The type that Kim has is AML, I found out that is the overproduction of early myeloid cells making immature cells sometime called blast cells, that fill the bone marrow and block up the spaces needed for production of health blood cells. These blast cells spill over and enter the blood stream. As blast cells don't mature, so don't work right giving the appearance of anemia.

The Last bit got me, 'giving the appearance of anemia' the memory of the 5^th came back, when I was talking to her and said “your most probably anemic” How could I get it so wrong, mixing up a lack of iron and leukemia** . How could I HOW, over ten years as a first aider and I got it wrong. A mistake that could be greatest one I have ever done. I sit there trying to keep it together and take it in, tears welling up in my eyes. The sadness of the events of the last couple of days heavy in my heart and soul. I start to cry I was glad shell was asleep, I could let her see me crack as I needed to be the strong one. The informed one, keep money coming in and that was important as traveling and parking for visits was not going to be cheap.

With a heavy heart, I tried to turn in. As I needed strength for the days to come, I don't fall asleep easily and this night was no exception, with all the info I found out and the emotions flying around my pillow held head. Looking up at the ceiling darkened by the night. My mind would not rest, the questions of the day and why her, when though my head over and over again. Until my body forced it to give up and embrace sleep.

*Thank god for macmillan online.

** This question still haunts me today

The morning after - Part 2

I pull the handbrake up and turn the key, Chris Moyles and the engine noise disappear into nothingness. The vehicle parked in the same place from where I got into it a few hours earlier. I swing the door open as I look at the clock 0850. The keys clatter as they land with all the others in the box, with a sharp turn I am off, though the door so quick the reception staff did not see me. I hurry up the road, a sense of purpose filling my stride, to get home and get on the road to Shrewsbury with my stepdaughter, to find out what type of leukemia she had and what was going to be done about it.

This sense of purpose turned to dread during the 19 odd mile trip to the hospital. A trip I did many times with casualties. But this was different to transporting the sick and injured in my volunteering pass time. Next to me was my stepdaughter, the step of it was a technicality, in my heart she was more than that just Step. This wave of feelings that filled me, some I am still trying to name today, was horrible. The best way to describe them is, I felt I was driving my loved one to the gallows for a crime they did not commit.

The hospital moved quickly with the blood test and we where quickly in with the consultant. As I sat there in the consulting room I looked at him, his lip were moving and a weird language came out of his mouth. It is lucky I have some medical background and can decipher the basics. To get a better idea of what it was and how to treat it, Kim needed to have a bone marrow biopsy. I could not stay for that, no matter how much I wanted to be there. So I took my leave and headed off for a takeaway coffee, sandwich and the daily paper.

As I headed for the Landrover, I knew from experience of watching others what was going to happen next. Prepared as best as I could, a couple of clean rags as hankies, the paper to hide behind, but I did not make it to the landy before it started. Without purpose for 30mins, the tears started to fill my eyes, a lump growing in my throat. My professional side was started to crack, my emotions coming to the surface as they should at a time like this.

I must have been a sight. Sitting in the landy, newspaper open on the steering wheel. Crying and sniffing, like a big blubbering baby. Out of the corner of my tear filled eye I see a Car park attendant passing, looking at the ticket and then at me, un-phased at this sight and carries on with his job. A chuckle fights it way though the sobbing to the surface, as my mind places a thought bubble above his head saying “third one today, must be the day for bad news, and it only 10 am”. My defences where fighting back, I needed to get it back together enough to return to Kim and support her. No matter how much I wanted to curl up and cry, I force the sandwich down and drink my coffee. Wiped my eyes and headed back into the hospital.

The morning after - Part 1

My mobile sprang into life, sounding the dawn of a new day. I roll over and press the button to make it stop for 5 mins. For at least 3 of them minutes life was normal until reality and the memory of what was happening snapped into my mind. I was sitting up in bed smoking before the mobile broke it silence again. What to do, how to do it, what was going to happen. Flew around my head, as I got dressed for work. There was no time last night to get cover at work, and I needed to at least get the morning pick up done.

The air was still a fine mist of rain as I walked in a daze to work. I needed to see the caretaker on morning that week, my first point of contact with work at that god forsaken time in the morning. The revolving door still moves as I pick up the vehicle keys, in a empty reception area. As I turn to leave, Barry, one of the caretakers is there. I look at the floor, down hearted, and start to stammer, “I hhhhh have sommme thing to tell you.” after a short pause I continue getting a grasp on the stammering. “ The GP came to visit last night over Kim, oh , umm, she went to the doctors yesterday for a blood test as she was not looking that good and getting ear infections all the time, I thought it was anemia, umm,” as I was saying this, I looked up to see a confused look on his face as I was babbling, as I usually do when I get stressed. I take a deep breath and decide to bullet point it. “Kim has leukemia, got to get her to hospital at 0930. doing morning pick up then gone”

Barry blinks, looks at me. I cant remember what he said exactly only that his first words where “oh, fuck” he offered to do my pick up, but I decline his offer, he needs to be on site. I walk out to the vehicle, drop myself onto the driver seat, take another deep breath and sign. I turn the key as it awakes Radio One fills the air, Chris Moyles and the rest of the gang where chatting about something stupid that happened the day before. I close my eyes take a couple of steady breaths before opening them and driving off down the drive and way from the big gray building of work.

A bad night

Just as I went to light the first firework ,with a fine mist of rain in the air. The doorbell busts into life. I was expecting it to be a late comer so I waited a minute, I am sure that Mandy would not mind waiting a minute more for her birthday firework display.

My wife appears at the kitchen door silhouetted in the doorway by the naked 100w light bulb hanging from the roof, calling for me to come inside as Dr L is there. As I walked across the wet and slightly muddy grass towards the house. I thought “I'm sure I didn't invite him”

Sitting on the laminate flooring. In a State of shock, a strip of mud flops from the tread of my work boot. At the same time as I am trying to regain some composure. In front of me Dr L had the look of someone that would rather be rodding drains full of raw pungent sewage, or anything else. than having to tell us what he just did and knew in his heart could only be done face to face. I knew it hard on him, and could imagine him going home flopping into a chair, replying to his wife question with “I just told a 16 year old she got leukemia”

I carry on looking around the room to Kim. She sat there dirty blond shoulder length hair, covering her ears and the hearing aids that adorned them. Her face the same white that made me tell her she was most probably anemic, when we packed her off to the Doctors early that day. Next to her is my wife, a thin woman with just above shoulder length hair. They both shared the same dazed and shocked look. Doc L asked if there was any question, this hung in the air for moment. Before anyone spoke. To this day I still can not remember if anyone spoke before me.

I wondered who was speaking, I know that male voice, it took me a second or two to place it. It was MINE. It was asking “what do we need to do next?” what the hell my mouth has taken on a mind of it own!!! well not really, the practical part of my brain is running the show. Thank god it was, I was still falling over in shock, at least in my mind. At least I had mental sat up enough by the time Dr L was leaving to talk on the door step.

As I showed him out, I think I shocked him a bit. As I passed comment on how hard it must be for him to break news like that, he agreed. As I thanked him and closed the door, I heard the sound of crying drifting though from the kitchen. It was not Kim, or my wife but Mandy. What a thing to be told on your birthday, your sister is seriously Ill.

After a Quick conversation, It was decided that the fireworks would go ahead. It was a more muted affair then usual years. With the sound of half hearted mummers or sobbing. And the younger kids that did not know or understand were enjoying it. At least two or three in this small group of party goers where having a good time.

With the smoke hanging in the damp cold air, the fine mist of rain soaking my clothes, spent cartages, sticks and paper of the fireworks lay strewn across the wet and muddy grass at top of the garden. The scene of deviation was something akin to my thoughts and feeling. As we cleared away, the visitors leave and we headed for bed, little did we know what the next Severn day had in store for us.