It is the 19th of January. I am sadden by what's been going on over the last couple of weeks.
I don't know if I'm a pessimist or a realist. But the worry I had when we found another angle on Kim's sporadic eating have come true. She has now stopped altogether, even the food parcels we are taking in.
I am leaning on the Front of the landy smoking the 3rd cigarette in a row. Pondering the Glass half empty / half full thing and decided that at the moment it could be 'Glass what glass some bugger drunk it and nicked the bloody Glass'. If I am this low after 2 month & 14 days, God know what I will be like when it been 12 months.
I Kick the little Voice in my head saying “If she gets that far' into a sound proof cell in my mind. I take a deep breath and head for the entrance.
“Don't say it” Kim says as I walk though the door “ I have had enough off mum” I know Shell has been on online chat with her since before I got home from work.
“She's right” was the reply as I dropped the bag of clean washing in the corner. “you do need to eat or you will become too weak for treatment. I know the chemotherapy is most probably changing the way things taste, but a dietitian has been up here working out a food plan with you. Please see them again and try even harder to eat”
I could tell by the the look on her face that everyone has been talking to her about it, so I decided to leave it there.
I started trying to talk about other things but it was hard with the 'no eating elephant' in the room. After a while of uneasy conversion, I said see you later.
Talking to the nurses about the options over nutrition for Kim. The Doctor was not going to fit a feed line, as it could scratch her nose or throat.
The thoughts of a garden hose, funnel and a big jug of oxtail soup have flashed though my weird mind.
There are no words for how I feel about Kim not eating. Very worried is the understatement of the century.
Gunk
I am on the way to see Kim, we need to to about a phone call shell made to the ward that had her worried. I wash up and head in to the cell, sorry isolation room.
“ok, why aren't you” I asked “I don't like them” “ you need to eat to keep your strength up, get the vitamins and minerals you need” I reply. “It's crap, would you eat budget meals, cook in bulk, left to dry up, harden and go gooey for ages on a heated trolley?”
I am lost for words for a second or two, as I was trying to talk Kim back into regulator eating and my answer to her would be no. But I can't as I would prove her right. So I say the first thing that come into my head “ You know some of the places I eat at some times. I have to resort to a small hack saw to cut some of that food.”
Kim sighs and give me a look of 'is that the best you could do' “I see your jokes are not getting any better” We carry on the great food debate until we notice a young nurse doing something to the white board strip used for the patient name on the door. She gets up smiles, waves and points to the outside of the door, before opening it so we can see what she has done.
It was a great free hand drawing of spongebob Square pants, Kim loved it. After chatting about the drawing, the nurse started chatting about Kim eating. She nips out of view for a second or to and reappears with an apron on as the conversation carried on.
“Maybe some more teenage type meals could be more to your taste” the nurse suggests “as long as it looks like food, and not something that get dunked on your head in Get your own back” Kim replies. “ok, We will have to raid the children's wards menu then” With this the nurse leaves with a smiles and see you later.
I am have a bit of a mix of thoughts and emotions as I leave. Relief that another angle has been found for Kim eating problem. But worry that it may not work and she gets worse.
“ok, why aren't you” I asked “I don't like them” “ you need to eat to keep your strength up, get the vitamins and minerals you need” I reply. “It's crap, would you eat budget meals, cook in bulk, left to dry up, harden and go gooey for ages on a heated trolley?”
I am lost for words for a second or two, as I was trying to talk Kim back into regulator eating and my answer to her would be no. But I can't as I would prove her right. So I say the first thing that come into my head “ You know some of the places I eat at some times. I have to resort to a small hack saw to cut some of that food.”
Kim sighs and give me a look of 'is that the best you could do' “I see your jokes are not getting any better” We carry on the great food debate until we notice a young nurse doing something to the white board strip used for the patient name on the door. She gets up smiles, waves and points to the outside of the door, before opening it so we can see what she has done.
It was a great free hand drawing of spongebob Square pants, Kim loved it. After chatting about the drawing, the nurse started chatting about Kim eating. She nips out of view for a second or to and reappears with an apron on as the conversation carried on.
“Maybe some more teenage type meals could be more to your taste” the nurse suggests “as long as it looks like food, and not something that get dunked on your head in Get your own back” Kim replies. “ok, We will have to raid the children's wards menu then” With this the nurse leaves with a smiles and see you later.
I am have a bit of a mix of thoughts and emotions as I leave. Relief that another angle has been found for Kim eating problem. But worry that it may not work and she gets worse.
Ghost of Christmas past
“It's been hard over Christmas, boxing day especially” I say to the powerfully build bloke sitting on my sofa. “you do know” I continued “ I woke up in the early hours of boxing day morning in a cold sweat, as my dreams took me to revisit the last time I saw him. Lying there so waxy in a Hospice bed. Kim's leukemia has bought a ghost of the past back to me”
It seemed fitting that I was talking to Tom, a very close and dear friend of the present about a close and dear friend of the past. Although Tom some times looks like a bouncer, sorry Door staff. He has a heart of gold, and Know I need to talk about this.
He leans forward with concern, and sums up my thoughts in one line “You are worried this is the future for Kim.” “ You know that every illness is different and Kim's is no different in that way. She has a 80% chance of surviving this.”
“I know, I know” as I am saying this I'm playing uneasily with my lighter.
“This will play on your mind, especially when its around the anniversary of his death. It is a big event in your life. It will affect you. But that does not mean it going to happen again.”
“Yes, I suppose. This whole thing is getting me down a bit, I feel so mentally and emotionally tired. “
“ I know, Its hard on all of you. You do know that I am here for you to talk to, I am always on the other end of a text.”
I just nod in recognition of the offer
It seemed fitting that I was talking to Tom, a very close and dear friend of the present about a close and dear friend of the past. Although Tom some times looks like a bouncer, sorry Door staff. He has a heart of gold, and Know I need to talk about this.
He leans forward with concern, and sums up my thoughts in one line “You are worried this is the future for Kim.” “ You know that every illness is different and Kim's is no different in that way. She has a 80% chance of surviving this.”
“I know, I know” as I am saying this I'm playing uneasily with my lighter.
“This will play on your mind, especially when its around the anniversary of his death. It is a big event in your life. It will affect you. But that does not mean it going to happen again.”
“Yes, I suppose. This whole thing is getting me down a bit, I feel so mentally and emotionally tired. “
“ I know, Its hard on all of you. You do know that I am here for you to talk to, I am always on the other end of a text.”
I just nod in recognition of the offer
As a mark of respect - No Kim post
You may be wondering why there is no posting about Kim's leukemia this week. This is out of respect for a wonderful woman I knew on twitter and as a listener to Radio Shropshire.
Val Higgins, A woman that touched the hearts of many on twitter. A creative, witty and wise person who all way faced her cancerous tumour with dignity & a smile.
She meant so much to her friends on twitter, to some she was the witty encyclopaedia. to others a creative person that made them laugh or gave wise words, when they were needed, In what ever Val did she did it with wit and a smiles.
Or as I said on twitter
Goodbye @valdary you will be sadly missed by many people. At least you can be creative, witty and wise, without pain now.
Val Higgins, A woman that touched the hearts of many on twitter. A creative, witty and wise person who all way faced her cancerous tumour with dignity & a smile.
She meant so much to her friends on twitter, to some she was the witty encyclopaedia. to others a creative person that made them laugh or gave wise words, when they were needed, In what ever Val did she did it with wit and a smiles.
Or as I said on twitter
Goodbye @valdary you will be sadly missed by many people. At least you can be creative, witty and wise, without pain now.
Back to the treadmill
Without any problems with her temperature it was the prearranged time for Kim to go back to the ward ready for the next course of treatment. As we headed for Shrewsbury in the dark around 6pm I thought back over the last couple of days.
The fun of Christmas dinner, The jokes about the WII accident, Laughing at Stupid films on DVD during Boxing day, The incident with Stu and a trainer*. All in all I really enjoyed my Christmas with Kim, even though it hard work having a Leukemic child at home.
As we come to the island with the hospital turn, Alec a friend of mine appears, and waves in a weird manner, With his Amber warning lights. God they are bright, in the darkness of the night. We pull in just before the hospital for a quick chat. First about Kim, then my kidneys** then how Christmas when. After saying goodbye, it quickly around the corner and into the hospital car park.
There are smiles and hellos from the nursing staff, Friendly and happy chatter. With all Kim's stuff sorted out, and Kim waving the latest DVD she has at the staff, some Joke about one to one nursing care for about the length of the DVD. It was time to head home.
I sit down in front of the PC, this very PC I am blogging on now. And update my Facebook status with “Dave & Shell is back on the treadmill of having a kid going though chemotherapy”
With that one line status update it was back to Business as usual for a Family fighting Leukemia together. And the reality returned with a bump.
*Long story, I could write a blog just about what stu gets up to. But wont.
** More about them Later in the Blog
The fun of Christmas dinner, The jokes about the WII accident, Laughing at Stupid films on DVD during Boxing day, The incident with Stu and a trainer*. All in all I really enjoyed my Christmas with Kim, even though it hard work having a Leukemic child at home.
As we come to the island with the hospital turn, Alec a friend of mine appears, and waves in a weird manner, With his Amber warning lights. God they are bright, in the darkness of the night. We pull in just before the hospital for a quick chat. First about Kim, then my kidneys** then how Christmas when. After saying goodbye, it quickly around the corner and into the hospital car park.
There are smiles and hellos from the nursing staff, Friendly and happy chatter. With all Kim's stuff sorted out, and Kim waving the latest DVD she has at the staff, some Joke about one to one nursing care for about the length of the DVD. It was time to head home.
I sit down in front of the PC, this very PC I am blogging on now. And update my Facebook status with “Dave & Shell is back on the treadmill of having a kid going though chemotherapy”
With that one line status update it was back to Business as usual for a Family fighting Leukemia together. And the reality returned with a bump.
*Long story, I could write a blog just about what stu gets up to. But wont.
** More about them Later in the Blog
Boxing Day
I woke up feeling a bit bloated and windy, too much veg with the Christmas dinner I think. Shell was in the loo, she had not been right all night. Stuart was impatiently waiting for it, both of them had diarrhoea.
First thing to do, check Kim, her temperature was fine. You may be wonder why we are pre-occupied with Kim temperature, well here comes the science bit*.
Acute Myeloid Leukemia (AML) causes a drop in healthy blood cell production including White cells, Chemotherapy also causes a drop in white cells. This weakens the immune system. With the white cell part of immune system depleted other mechanisms kick in to combat the infection, one of these is fever. This is a very simple and affective why of picking up on illness in Kim and others with depressed immune system though leukemia and Chemotherapy.
Right with that out of the way, back to boxing day**. I can't decide if Shell and Stu have an bug or food poisoning, I'm not much to go by as my insides with take a lot of punishment. So it end up with a debate over what to do with Kim, let her stay or take her back to hospital.
Now Kim had very strong thoughts on this. The hospital staff had strong thoughts on this. I had thoughts on this, Shell Just had the urge to keep going to the loo! Oh and had thoughts on this.
The Hospital wants her to come back in, Kim wants to stay. Shell wants her to stay as healthy as possible and if that means going back to the ward then so be it. My thoughts, Well Kim will not move unless we physical carry her out to the Defender. The jury is out on why Shell and Stu are ill, and over the last 4 hours her Temperature has not change for the worst, it very healthy for her.
As this debate goes on Stu wants his mate in the house, and is not happy with the reply of no, from me and Shell. And headed off in a huff.
Where did the debate end up. Kim could stay with twice the amount of temperature checks, one move in the wrong direction, then it straight into the ward, no argument. Kim was sort of happy, The hospital and Shell was not happy, and Me well I was observing her and making the decision on the ground, and the less stress Kim had the better. So I was happy to go along with it.
*That saying reminds me of that bloody hair advert.
** There is a joke there about gloves, but I cant think of it.
First thing to do, check Kim, her temperature was fine. You may be wonder why we are pre-occupied with Kim temperature, well here comes the science bit*.
Acute Myeloid Leukemia (AML) causes a drop in healthy blood cell production including White cells, Chemotherapy also causes a drop in white cells. This weakens the immune system. With the white cell part of immune system depleted other mechanisms kick in to combat the infection, one of these is fever. This is a very simple and affective why of picking up on illness in Kim and others with depressed immune system though leukemia and Chemotherapy.
Right with that out of the way, back to boxing day**. I can't decide if Shell and Stu have an bug or food poisoning, I'm not much to go by as my insides with take a lot of punishment. So it end up with a debate over what to do with Kim, let her stay or take her back to hospital.
Now Kim had very strong thoughts on this. The hospital staff had strong thoughts on this. I had thoughts on this, Shell Just had the urge to keep going to the loo! Oh and had thoughts on this.
The Hospital wants her to come back in, Kim wants to stay. Shell wants her to stay as healthy as possible and if that means going back to the ward then so be it. My thoughts, Well Kim will not move unless we physical carry her out to the Defender. The jury is out on why Shell and Stu are ill, and over the last 4 hours her Temperature has not change for the worst, it very healthy for her.
As this debate goes on Stu wants his mate in the house, and is not happy with the reply of no, from me and Shell. And headed off in a huff.
Where did the debate end up. Kim could stay with twice the amount of temperature checks, one move in the wrong direction, then it straight into the ward, no argument. Kim was sort of happy, The hospital and Shell was not happy, and Me well I was observing her and making the decision on the ground, and the less stress Kim had the better. So I was happy to go along with it.
*That saying reminds me of that bloody hair advert.
** There is a joke there about gloves, but I cant think of it.
Christmas Day - Part 3
Kim pulls a face and mutters as I wave the thermometer at her. “I'm fine, I don't need to do that to know I'm fine” “well, if you are fine, then you won't mind proving it to me” was my reply as I put it in her hand.
As Kim sits there with the thermometer in mouth in my mum & dads front room, We have only just finished the beef or turkey baps. Steph and my dad are setting up her wii, with some comical moments.
Kim hands back the thermometer say “told you I was fine, why do we have to go though it all the time, its almost as bad as at hospital, they keep doing it every five flipping minutes” I threaten to use my BP & Oxygen Saturation* machines when we got home if she carry on complaining. Her reply was something like**,' you can go away with that idea'
With the Wii set up it was time to play, bowling as four people could play it, as we did steph got over enthusiastic and her control flew out of her hand, flying straight up in the air and hit the ceiling hard, she dives of to side as it thuds to the floor near where she had been standing. We all laughed after we all looked up to see if there was a dent.
After much fun with the wii and time getting on. It was time to head for home. We are all tried out, and every one falls asleep, well almost everyone. I lay there looking at the ceiling thinking about the fun we had today, and how having a seriously ill child bring home the family togetherness that Christmas is all about.
*pulse oximeter as used by ambulance crew to see if you need oxygen.
** There was a few rude words used, I will leave you to work out what she said.
As Kim sits there with the thermometer in mouth in my mum & dads front room, We have only just finished the beef or turkey baps. Steph and my dad are setting up her wii, with some comical moments.
Kim hands back the thermometer say “told you I was fine, why do we have to go though it all the time, its almost as bad as at hospital, they keep doing it every five flipping minutes” I threaten to use my BP & Oxygen Saturation* machines when we got home if she carry on complaining. Her reply was something like**,' you can go away with that idea'
With the Wii set up it was time to play, bowling as four people could play it, as we did steph got over enthusiastic and her control flew out of her hand, flying straight up in the air and hit the ceiling hard, she dives of to side as it thuds to the floor near where she had been standing. We all laughed after we all looked up to see if there was a dent.
After much fun with the wii and time getting on. It was time to head for home. We are all tried out, and every one falls asleep, well almost everyone. I lay there looking at the ceiling thinking about the fun we had today, and how having a seriously ill child bring home the family togetherness that Christmas is all about.
*pulse oximeter as used by ambulance crew to see if you need oxygen.
** There was a few rude words used, I will leave you to work out what she said.
Christmas Day - Part 2
Shell and her mum Pat are busy cooking in the kitchen. The smell wafting out was wonderful, there is nothing like the smell of a Christmas dinner being cooked. I could not hang around the kitchen door taking in the wonderful mixture of smells. I got to get on and set up for the dinner.
With eleven People eating, I had to get the table, well to be correct tables and chairs ready. We had some and the rest came from mine & shell parents. So cue the Christmas favourite of walking across the road, with a dining chair from the in law in each hand.
Before long half of the table was up in the middle of the front room, my parents arrive with a garden table and chairs to join ours and complete the the extra large table area. As I looked around at the finished table with the mismatch chairs of differing heights, I knew that Christmas social meeting was upon us.
We all sit down to eat. Kim has opted for the sofa, and with the conversion of mine & shell's dad I don't blame her one bit. I see food disappearing under the table, thanks to Steph & Stuart. Then something runs into my legs. It was billy Kims dog having a whale of a time, with the food being chucked under the table for him.
With Billy Shut in the kitchen, there was nowhere for the kids to hide the bits of the Christmas dinner they did not like. My dad and shells dad George are putting the world to right over what was left of the sprouts , stuffing and cranberry sauce.
With eleven People eating, I had to get the table, well to be correct tables and chairs ready. We had some and the rest came from mine & shell parents. So cue the Christmas favourite of walking across the road, with a dining chair from the in law in each hand.
Before long half of the table was up in the middle of the front room, my parents arrive with a garden table and chairs to join ours and complete the the extra large table area. As I looked around at the finished table with the mismatch chairs of differing heights, I knew that Christmas social meeting was upon us.
We all sit down to eat. Kim has opted for the sofa, and with the conversion of mine & shell's dad I don't blame her one bit. I see food disappearing under the table, thanks to Steph & Stuart. Then something runs into my legs. It was billy Kims dog having a whale of a time, with the food being chucked under the table for him.
With Billy Shut in the kitchen, there was nowhere for the kids to hide the bits of the Christmas dinner they did not like. My dad and shells dad George are putting the world to right over what was left of the sprouts , stuffing and cranberry sauce.
Christmas Day - Part 1
I am woken by Steph shout “Daddy, Daddy, It's Christmas Day. Get up Daddy.” a hyperactive 11 year old excited about it being Christmas day is not fun at, umm. I Finally get my eyes to focus, 0643 in the morning.
Bleary eye we all head downstairs, where Kim takes tablets and has her temperature checked, before opening of presents. The first to open a present is Steph, and its a wii. That I end up setting up as the rest of the present opening.
I don't know what happened for the next hour or so. I dosed off on the chair, When I woke Kim was on the end of the sofa near the TV playing a gentle wii game with Steph. Shell is in the kitchen, getting stuff in the oven for Christmas dinner. It not our turn for having Christmas dinner here, but with Kim being ill it is safer for her to limit visits to other house. So the In Laws are coming here, so we can go to my Parents in the late afternoon.
I check Kim's temperature, before heading off upstairs to get dressed, As I do Shell's mum turns up to help with the cooking.
Bleary eye we all head downstairs, where Kim takes tablets and has her temperature checked, before opening of presents. The first to open a present is Steph, and its a wii. That I end up setting up as the rest of the present opening.
I don't know what happened for the next hour or so. I dosed off on the chair, When I woke Kim was on the end of the sofa near the TV playing a gentle wii game with Steph. Shell is in the kitchen, getting stuff in the oven for Christmas dinner. It not our turn for having Christmas dinner here, but with Kim being ill it is safer for her to limit visits to other house. So the In Laws are coming here, so we can go to my Parents in the late afternoon.
I check Kim's temperature, before heading off upstairs to get dressed, As I do Shell's mum turns up to help with the cooking.
"Ohh, That Cold"
Kim has slept for about 2 hrs. she wakes with the help of a gentle rub of her shoulder and the waft of dinner. Looking a bit better for the rest, she tucked into her chicken dippers and chips. She really enjoyed eating something that had not been in a heated trolley for about 30 mins.
As she is finishing her dinner, Shell is running her a bath, the first bath in almost 2 months it. The isolation room only had a shower. Kim slipped into it, not to be seen for the next 20 mins. She really enjoyed it, but then came the drying and creaming. Cue Shell disappear into the bed room with a box of medical gloves and the tub of cream. Then hearing Kim going “ohh, that cold.”
I never creamed Kim after bathing as it was an all over covering, and there is some things a bloke in late twenties should not do to a teenage girl. And this is one of them, due to it being embarrassing enough standing naked in front of her mum let alone me.
Just as they were finishing, Amy* one of Kim's mates turned up. When she find out kim is having cream rubbed in, makes a B line to the bedroom door and starts joking about it should be done by a celebrity that is the heartthrob of the time**
Kim is Laughing at Amy. As most of us do when she is in funny mode. Accidental double entendre, getting the best laughs. God it's nice to see Kim laughing & joking with her life long friend.
The question is how long is this friendship going to carry on.
*Amy, Same age as kim and has a larger then life personally, making her a mood lifter.
**I Can't for the life of me remember who Amy said!
As she is finishing her dinner, Shell is running her a bath, the first bath in almost 2 months it. The isolation room only had a shower. Kim slipped into it, not to be seen for the next 20 mins. She really enjoyed it, but then came the drying and creaming. Cue Shell disappear into the bed room with a box of medical gloves and the tub of cream. Then hearing Kim going “ohh, that cold.”
I never creamed Kim after bathing as it was an all over covering, and there is some things a bloke in late twenties should not do to a teenage girl. And this is one of them, due to it being embarrassing enough standing naked in front of her mum let alone me.
Just as they were finishing, Amy* one of Kim's mates turned up. When she find out kim is having cream rubbed in, makes a B line to the bedroom door and starts joking about it should be done by a celebrity that is the heartthrob of the time**
Kim is Laughing at Amy. As most of us do when she is in funny mode. Accidental double entendre, getting the best laughs. God it's nice to see Kim laughing & joking with her life long friend.
The question is how long is this friendship going to carry on.
*Amy, Same age as kim and has a larger then life personally, making her a mood lifter.
**I Can't for the life of me remember who Amy said!
Coming home for christmas
Its the morning of Kim christmas break. And Shell is coming to the end of the cleanathon, by hoovering the beds and washing the sheets. Thank goodness I would be on the road to the hospital when she is dueling with the sofas using a hoover pipe, It a sight to be seen. The Cupboards are stocked and space made for the pills, creams and thermometer.
It was sunny but cold December day. I had been tired up with another matter in Shrewsbury, and got to Kim in the early afternoon. She was sitting on her bed when I arrived, arms crossed complaining I was late*.
With the need for barrier nursing gone I just walk in, It is strange walking in without the apron and hand cleaning. I disconnect the Freeview box and pack up the Xbox. With this done everything is ready to go.
She came with a suitcase, backpack and one plastic shopping bag. And now I think we have the complete luggage set to take back. I resist the urge to joke about women and packing for holidays.
We say bye and see you after Christmas to the nursing staff. We head to the landy, I joke that with all this stuff it could be overloaded. Kim just looks at me with her 'thats a bad joke' look.
Kim settle into the landy wrapping her quilt around herself, As it cold out and the fan is doing the on off game. It amazing how thing start playing silly bugger when you need it. Oh, well. At least she is warm in her quilt.
We arrive home and everyone is in doing what they normal do. The in laws appear from across the road moments after we get in the door. Stuart is complaining that his mate cant come in, but one of them has had diarrhoea the day before. And he cant quite get it idea of bug being bad for kim into his head.
Kim settle on the sofa to watch a Christmas film, turn on the subtitles, Slides her hand up her head , turning off her hearing aids to block out her grandad taking about nothing really to her.
Pat, Shell, Mandy and myself are looking at each other trying not to laugh as we all know that kim has turn her aids off and that he is unaware that she has, He finally stops when kim falls asleep.
*She should know by now that I am not the best of time keepers
It was sunny but cold December day. I had been tired up with another matter in Shrewsbury, and got to Kim in the early afternoon. She was sitting on her bed when I arrived, arms crossed complaining I was late*.
With the need for barrier nursing gone I just walk in, It is strange walking in without the apron and hand cleaning. I disconnect the Freeview box and pack up the Xbox. With this done everything is ready to go.
She came with a suitcase, backpack and one plastic shopping bag. And now I think we have the complete luggage set to take back. I resist the urge to joke about women and packing for holidays.
We say bye and see you after Christmas to the nursing staff. We head to the landy, I joke that with all this stuff it could be overloaded. Kim just looks at me with her 'thats a bad joke' look.
Kim settle into the landy wrapping her quilt around herself, As it cold out and the fan is doing the on off game. It amazing how thing start playing silly bugger when you need it. Oh, well. At least she is warm in her quilt.
We arrive home and everyone is in doing what they normal do. The in laws appear from across the road moments after we get in the door. Stuart is complaining that his mate cant come in, but one of them has had diarrhoea the day before. And he cant quite get it idea of bug being bad for kim into his head.
Kim settle on the sofa to watch a Christmas film, turn on the subtitles, Slides her hand up her head , turning off her hearing aids to block out her grandad taking about nothing really to her.
Pat, Shell, Mandy and myself are looking at each other trying not to laugh as we all know that kim has turn her aids off and that he is unaware that she has, He finally stops when kim falls asleep.
*She should know by now that I am not the best of time keepers
Christmassy Hospital
Glad that I am out of the Santa suit, the lift door open and I step into the entrance area for Kims ward.
Oh great, Christmas decoration hang from the doors and the walls. Great I don't have the Christmas feeling, and Christmas is everywhere.
Kim is lying on the bed watching TV, and on the laptop chatting. As I chat with the nurses about the home rest over Christmas. It going to be for 10 days, hopefully normal enough to feel like the holiday season.
The Isolation is not a strict as normal as her white cell count is up and she is fairly stable. So she takes great Pride is telling me that she has been decoration the ward, and the tree. Kim loves Christmas, and is really looking forward to it, seeing the family and good food.
She was going on about her Nans Christmas dinner and how much she would enjoy it. Compared to the not very nice food* the hospital proves. As she did she was eating a bag of crisps I brought in.
She ends the visit by trying to talk one of the nurse that came in to check her temp, blood pressure, etc. in to letting her go now a day or so early. Much to the nurse's amusement.
As I am heading off I talk to the nurses, They enjoy her being there when she is like this, almost back to her old cheeky funny self. I take one last look. The next time I see her I will be a pack horse as we leave to come home together.
A Christmas with Kim being funny and cheeky. Maybe Christmas is not going to be too bad after all.
*well I can't repeat the exact words
Oh great, Christmas decoration hang from the doors and the walls. Great I don't have the Christmas feeling, and Christmas is everywhere.
Kim is lying on the bed watching TV, and on the laptop chatting. As I chat with the nurses about the home rest over Christmas. It going to be for 10 days, hopefully normal enough to feel like the holiday season.
The Isolation is not a strict as normal as her white cell count is up and she is fairly stable. So she takes great Pride is telling me that she has been decoration the ward, and the tree. Kim loves Christmas, and is really looking forward to it, seeing the family and good food.
She was going on about her Nans Christmas dinner and how much she would enjoy it. Compared to the not very nice food* the hospital proves. As she did she was eating a bag of crisps I brought in.
She ends the visit by trying to talk one of the nurse that came in to check her temp, blood pressure, etc. in to letting her go now a day or so early. Much to the nurse's amusement.
As I am heading off I talk to the nurses, They enjoy her being there when she is like this, almost back to her old cheeky funny self. I take one last look. The next time I see her I will be a pack horse as we leave to come home together.
A Christmas with Kim being funny and cheeky. Maybe Christmas is not going to be too bad after all.
*well I can't repeat the exact words
Tradition
Bloody hell its almost Christmas. Where did that come from? And guess who has been 'volunteered'* for a tradition in my department at work. Yes you guessed it ME!!
I have to dress up as Father Christmas and hand out present to nursery children, something I would have trouble with even if my mind was not else where. But Sharron one of the drivers said she would help, and she was already dressed for it.
Standing in the reception area dressed in a ill fitting Santa suit, bad fake beard,. Sharron stands next to me wearing a much better looking outfit. Black Boots with white fur trim, black legging, Santa Smock, Green wig, jester style Santa hat, rosie cheeks (make up) and a big smile.
As the Kids arrive we take ours seats, and start handing out the presents. I am glad Sharron is there, as I am not that talkative, but she is cover for it well. My thoughts where with Kim,wondering what she would be doing now, If she had visitors? Not the sea of children in front of me, fresh faced without a care in the world , so innocent and naïve to the horrors of the world.
Sometimes I wished I could be like that, and not scarred by life and death.
*everyone bar me knew what was coming and legged it, thanks guys
I have to dress up as Father Christmas and hand out present to nursery children, something I would have trouble with even if my mind was not else where. But Sharron one of the drivers said she would help, and she was already dressed for it.
Standing in the reception area dressed in a ill fitting Santa suit, bad fake beard,. Sharron stands next to me wearing a much better looking outfit. Black Boots with white fur trim, black legging, Santa Smock, Green wig, jester style Santa hat, rosie cheeks (make up) and a big smile.
As the Kids arrive we take ours seats, and start handing out the presents. I am glad Sharron is there, as I am not that talkative, but she is cover for it well. My thoughts where with Kim,wondering what she would be doing now, If she had visitors? Not the sea of children in front of me, fresh faced without a care in the world , so innocent and naïve to the horrors of the world.
Sometimes I wished I could be like that, and not scarred by life and death.
*everyone bar me knew what was coming and legged it, thanks guys
Drained Piggy Bank
Having a ill child in hospital is not only physically and emotionally draining, it is also draining on the old bank balance. Especially during the recession, and the fuel prices going up, my trips to the hopstial are bring my mileage up. I have gone from 300 miles a month (75 miles a week) up to 800 to 1200 a month (200 to 300 miles a week). Oh, yes the knock on effect of high fuel prices is a raise in food prices.
Hospital Parking charges are draining too, £2 a visit, there is a system for getting it cheaper, but only if you can go there during the working day. No chance of getting it if you work all day.
The hard part is balancing going down to regularly visit Kim and staying in the black.
And before anyone says “Stop complaining” I will. Plus point, Vat down to 15% for 13 months
See you next week, when I get back on track.
Hospital Parking charges are draining too, £2 a visit, there is a system for getting it cheaper, but only if you can go there during the working day. No chance of getting it if you work all day.
The hard part is balancing going down to regularly visit Kim and staying in the black.
And before anyone says “Stop complaining” I will. Plus point, Vat down to 15% for 13 months
See you next week, when I get back on track.
Bubble Wrap
I deposited Kim back into her nice clean room, the deep clean team did a wonderful job.
Driving back was a mix of emotions, it was nice to have her home for the day but she was weak as a kitten. So fragile I had a image of wrapping her up in bubble wrap for the journey back*.
As I pull up the handbrake a wave of tiredness flows over me, It may of look to any outsiders as a lazy day at home, although you could not see, I had been far from restful from the first time I set eyes on her this morning, there are a lot of thing you can check without touching. Rate of breathing, pupil reaction time, blood refill to skin. And that what I did all day, checking for changes in the above. And now the mental strain is showing.
I drop my weary body out of the landy and head into the house, the door squeaks as I open it, The house looked normal enough, shell checking emails the kids watching TV, but there is a feeling of unfilled space and a more sombre mood than the normal tonight. I wonder if seeing her here has brought home the thin line she treads.
As I lay in bed that night looking at the ceiling as I normal do now, I feel as far away from Kim as I have ever felt before and so close.
*I do have a weird mind, or its a defence mechanisms. I cant work out which one it is. :D
Driving back was a mix of emotions, it was nice to have her home for the day but she was weak as a kitten. So fragile I had a image of wrapping her up in bubble wrap for the journey back*.
As I pull up the handbrake a wave of tiredness flows over me, It may of look to any outsiders as a lazy day at home, although you could not see, I had been far from restful from the first time I set eyes on her this morning, there are a lot of thing you can check without touching. Rate of breathing, pupil reaction time, blood refill to skin. And that what I did all day, checking for changes in the above. And now the mental strain is showing.
I drop my weary body out of the landy and head into the house, the door squeaks as I open it, The house looked normal enough, shell checking emails the kids watching TV, but there is a feeling of unfilled space and a more sombre mood than the normal tonight. I wonder if seeing her here has brought home the thin line she treads.
As I lay in bed that night looking at the ceiling as I normal do now, I feel as far away from Kim as I have ever felt before and so close.
*I do have a weird mind, or its a defence mechanisms. I cant work out which one it is. :D
Day out
I wake up to the sound of the hoover and smell of polish. I walk into the bathroom to see it been clean to within a inch of its life. I get dressed and head downstairs where I see shell in a almost dueling like manner attacking the sofa with the hoover.
I can tell Kim is coming home, the latest news is this is a one day visit home, not the week she was hoping. Well it better than nothing, and the word has got out. There is a huge list of people wanting to pop around, we are warily that this could tire kim out too much or worse one of them could bring an illness with them.
Quick conversation with them about illnesses drop the list by half. We did not want to do it, but we had to do it to protect Kim. My mum had visited her a lot when she is in hospital so decided to not pop in. with all that sorted it was time to go get Kim.
Kim was sitting on the corner of her bed coat in hand, bandanna on head. Chomping at the bit to get going. It is strange going into the room with out the barrier nursing stuff on. But considering she was heading out some what logical.As we left the cleaning staff arrive to do a full deep clean of the room during her time away.
I can't remember who got to Kim first Shell, Steph or Billy. All I know is she had a big welcome. After billy ran around madly he joined kim on the sofa. Where they both fell asleep. And that is what Kim did most of the day, sleep. The Treatment was really taking it out of her.
I can tell Kim is coming home, the latest news is this is a one day visit home, not the week she was hoping. Well it better than nothing, and the word has got out. There is a huge list of people wanting to pop around, we are warily that this could tire kim out too much or worse one of them could bring an illness with them.
Quick conversation with them about illnesses drop the list by half. We did not want to do it, but we had to do it to protect Kim. My mum had visited her a lot when she is in hospital so decided to not pop in. with all that sorted it was time to go get Kim.
Kim was sitting on the corner of her bed coat in hand, bandanna on head. Chomping at the bit to get going. It is strange going into the room with out the barrier nursing stuff on. But considering she was heading out some what logical.As we left the cleaning staff arrive to do a full deep clean of the room during her time away.
I can't remember who got to Kim first Shell, Steph or Billy. All I know is she had a big welcome. After billy ran around madly he joined kim on the sofa. Where they both fell asleep. And that is what Kim did most of the day, sleep. The Treatment was really taking it out of her.
Thoughts in the night
Everywhere is quiet. I am looking at the darken ceiling lit gently by the streetlight outside throwing a light shadow of the window frame onto it.
As I lay there looking at the ceiling I started to think.
It has been a hard 38 days. My head had and still is all over the place. The shock had passed, leaving the feeling of pain, anger, realization, despair and sadness.
Unlike my cool almost professional outside I was far from cool inside. Lucky the shock only lasted a couple of days, the anger lasted a bit longer, but passed.
I surprised myself over the last month or so with my reactions to the situation I have been in.
The numbness of the dark wet night we got told
The frustration of being stuck in hospital with the stones
The mix of getting home
The over powering experience of all the support at work, and the strange feeling of anger. Dont know why, weird.
To the realization and sadness I feel now.
There is a little up lift
Later today Kim should be coming home for a week break from hospital. I just hope her temperature and white cell count play ball.
Time to try to get to sleep again.
As I lay there looking at the ceiling I started to think.
It has been a hard 38 days. My head had and still is all over the place. The shock had passed, leaving the feeling of pain, anger, realization, despair and sadness.
Unlike my cool almost professional outside I was far from cool inside. Lucky the shock only lasted a couple of days, the anger lasted a bit longer, but passed.
I surprised myself over the last month or so with my reactions to the situation I have been in.
The numbness of the dark wet night we got told
The frustration of being stuck in hospital with the stones
The mix of getting home
The over powering experience of all the support at work, and the strange feeling of anger. Dont know why, weird.
To the realization and sadness I feel now.
There is a little up lift
Later today Kim should be coming home for a week break from hospital. I just hope her temperature and white cell count play ball.
Time to try to get to sleep again.
I know you from somewhere.
Its Saturday and it a overcast day. I am walking in with a bag of clean stuff, new mags and a couple of DVD. As I do the usual pre entry routine I notice there is some one in with Kim already.
I know her from somewhere, I just could not put my finger on it. I say hello and she nods. With my back to them putting the stuff down I hear nothing until they both laugh. Ok she is deaf too, that narrow it down. It turns out the laughter was about me not recognizing her. In my defense I had not seen her in about 2 and half to 3 years, at a bowling ally.
She is Katie, one of Kim very good friends from the SIS get togethers. They are always chatting away on facebook, messager or in any other non verbal medium.
I am treated to them laughing and joking using as little verbal cues as possible, they know each other so well, that even with out sign they can do it really well. Some thing I have seen lots of the kids do in SIS meet ups.
So here I am an outside in the world of hearing impaired kids. Being able to pick up bits of the interaction between them, but a lot more than someone that is not used to the world of a deaf child.
Kim was enjoying the jokey banter of who's football team was better, her (Liverpool) or Katie (Manchester United). The fit lads in the mags and all the other girly stuff they go on about, well I say girly they are both tomboys.
This carries on for a while until katie need to head off, the parting shot is Katie waving the man u badge on her shirt and doing the winner W with her hand then pointing at Kim liverpool cover and doing the loser L. Kim replys doing the W for her cover and the L at Katie's top. Katie disapears though the door saying "no, they are the losers"
For a time I saw the old pre illness Kim, laughing, joking and taking the Mick. It was great to see, the day to day grind of her illness had been getting me down, wearing my soul and ripping at my heart.
But today I left feeling a little bit upbeat.
I know her from somewhere, I just could not put my finger on it. I say hello and she nods. With my back to them putting the stuff down I hear nothing until they both laugh. Ok she is deaf too, that narrow it down. It turns out the laughter was about me not recognizing her. In my defense I had not seen her in about 2 and half to 3 years, at a bowling ally.
She is Katie, one of Kim very good friends from the SIS get togethers. They are always chatting away on facebook, messager or in any other non verbal medium.
I am treated to them laughing and joking using as little verbal cues as possible, they know each other so well, that even with out sign they can do it really well. Some thing I have seen lots of the kids do in SIS meet ups.
So here I am an outside in the world of hearing impaired kids. Being able to pick up bits of the interaction between them, but a lot more than someone that is not used to the world of a deaf child.
Kim was enjoying the jokey banter of who's football team was better, her (Liverpool) or Katie (Manchester United). The fit lads in the mags and all the other girly stuff they go on about, well I say girly they are both tomboys.
This carries on for a while until katie need to head off, the parting shot is Katie waving the man u badge on her shirt and doing the winner W with her hand then pointing at Kim liverpool cover and doing the loser L. Kim replys doing the W for her cover and the L at Katie's top. Katie disapears though the door saying "no, they are the losers"
For a time I saw the old pre illness Kim, laughing, joking and taking the Mick. It was great to see, the day to day grind of her illness had been getting me down, wearing my soul and ripping at my heart.
But today I left feeling a little bit upbeat.
the touble and cyber
Over the time Kim has been in hospital. We have been looking at getting Internet for Kim. Shell has been talking Sensory Inclusion Service (SIS) about the technical side as they have a department on the hospital site. Unfortunately dial up over a fix phone line is not possible.
They talked with the Shropshire deaf children society (SDCS) about the problem, and SDCS have decided to by a loan laptop for use by deaf children. They are adding a USB mobile dongle that we will top up with data credit.
You really don't know what this means to us. Kim can communicate with us, her friends, with the world. Letting her reach out side the confines of the cell, sorry isolation room. Being able to chat online with her, means her mum is only a click away, and for a teenager that can be a godsend or a cures. For Kim I think it the first of the two.
It is going to be a week or so before the laptop arrives, and Kim is looking forward to it. It is nice to see something other than sadness, tiredness or just fed up look on her face.
You got to hold on to the little thing like that look.
They talked with the Shropshire deaf children society (SDCS) about the problem, and SDCS have decided to by a loan laptop for use by deaf children. They are adding a USB mobile dongle that we will top up with data credit.
You really don't know what this means to us. Kim can communicate with us, her friends, with the world. Letting her reach out side the confines of the cell, sorry isolation room. Being able to chat online with her, means her mum is only a click away, and for a teenager that can be a godsend or a cures. For Kim I think it the first of the two.
It is going to be a week or so before the laptop arrives, and Kim is looking forward to it. It is nice to see something other than sadness, tiredness or just fed up look on her face.
You got to hold on to the little thing like that look.
Kims present to herself
With Xbox 360 in hand I headed into see Kim. She had paid for it out of her own money as an early Christmas present to herself. We had just gone out and got it for her. Tested it as all the equipment being used in the hospital has to be PAT* tested, and clean it down so it has as little bug on it as possible.
It been a couple of days since she should have been out, her white cell count is still too low. The doctors hope to have it high enough for Kim to be out for Christmas. Which will be good, she loves her Christmas dinners, and she complains about the hospital food.
As I walk thought the door into the cell, Kim looked down. I think I would be too if I had to look at the same white walls for 26 days. She see the Xbox and brightened a bit. We get chatting about things as I unpack it. As my back was turned Kim asked "Dave, I know you don't bet but.......
Right back to the posting
with the Xbox installed and Mamma Mia in the CD drive, I collect the dirty washing and head off to the car park, with the bet with Kim heavy on my soul. I know its hard but I hold out hope.
Seeing Kim down like that and thinking in that way make me feel even more down than usual.
*Portable Appliance Testing, a test to check that electrical equipment is safe to use.
It been a couple of days since she should have been out, her white cell count is still too low. The doctors hope to have it high enough for Kim to be out for Christmas. Which will be good, she loves her Christmas dinners, and she complains about the hospital food.
As I walk thought the door into the cell, Kim looked down. I think I would be too if I had to look at the same white walls for 26 days. She see the Xbox and brightened a bit. We get chatting about things as I unpack it. As my back was turned Kim asked "Dave, I know you don't bet but.......
screech of brakes. Everything freezes. I turn from my PC screen to look at you.
Hello dear blog reader, hope you are all well.
I bet you are wondering why I stop this posting mid flow.
Well I'm in a dilemma
The next bit is Kims thoughts and feeling about someone, and I believe that at this time putting it on the blog for all to see will cause pain and hurt to them.
So I have decided it is best to leave it between the 4 people that know about what happened next.
Apologizes, but I have not made this decision lightly.
Right back to the posting
with the Xbox installed and Mamma Mia in the CD drive, I collect the dirty washing and head off to the car park, with the bet with Kim heavy on my soul. I know its hard but I hold out hope.
Seeing Kim down like that and thinking in that way make me feel even more down than usual.
*Portable Appliance Testing, a test to check that electrical equipment is safe to use.
and the white cell counts are in....
Kim should be coming home for a break before the next lot of chemotherapy, but her white cells are have a different idea. They are not building up as quickly as thought. With the white cell count being so low it would be dangerous even suicide for her to come home.
The chemotherapy damages the white cells hence thecell isolation room, to protect from infections during the treatment, and a low white cell count means that there is low or no defence against infection.
Kim was not that pleased that her cell count was keeping her from escaping the cell. She was desperate to see billy her chocolate Labrador, her mum and eat some decent food.
As I left her that night she was down, consoling herself with the DVD of Mamma Mia I had taken in that day.
I sat in the landrover, as it felt like someone was cheese grating my heart and soul. It was a bit more than just a single tear tonight.
The chemotherapy damages the white cells hence the
Kim was not that pleased that her cell count was keeping her from escaping the cell. She was desperate to see billy her chocolate Labrador, her mum and eat some decent food.
As I left her that night she was down, consoling herself with the DVD of Mamma Mia I had taken in that day.
I sat in the landrover, as it felt like someone was cheese grating my heart and soul. It was a bit more than just a single tear tonight.
whats that rattling?
Get up
Work
Home
Food
Visit Kim
Bed
And repeat.
I had just finished a week of the above, it is Friday 28 November, time to head off to visit Kim She is on so many tablets that if she had the energy to jump up and down she would rattle*. And a lovely cream for the rash that appeared 4 days ago.
It was washing swap day, so I had a bag as big as Santa but I was the other end of jolly and 4 Sponge bob DVDs. Although 16, she is a bit of a big kid when it come to sponge bob.
After cleaning hands apron on,etc. I get into the room.
Kim is now bald, or as she said “I'm a slap head” I turn around from putting the bags down to get a shock, A Wig waved in my face, with the word “Im not fucking wearing this, it way too itchy!”
it's a nice wig, well made. Shame her skin is become really sensitive to wear it, this is one of the side affects what is part and parcel of this aggressive treatment. Her skin was blotchy and sore, a sore that look akin to a cold sore was making a appearance on her top lip.
After a bit of a chat, I headed for home. I have to pull in before I left the car park. It had only be 23 day from that horrible night and my heart and soul is being hit hard by seeing this happen to her.
*Ok, maybe not but she is on 8 tablets a day.
Work
Home
Food
Visit Kim
Bed
And repeat.
I had just finished a week of the above, it is Friday 28 November, time to head off to visit Kim She is on so many tablets that if she had the energy to jump up and down she would rattle*. And a lovely cream for the rash that appeared 4 days ago.
It was washing swap day, so I had a bag as big as Santa but I was the other end of jolly and 4 Sponge bob DVDs. Although 16, she is a bit of a big kid when it come to sponge bob.
After cleaning hands apron on,etc. I get into the room.
Kim is now bald, or as she said “I'm a slap head” I turn around from putting the bags down to get a shock, A Wig waved in my face, with the word “Im not fucking wearing this, it way too itchy!”
it's a nice wig, well made. Shame her skin is become really sensitive to wear it, this is one of the side affects what is part and parcel of this aggressive treatment. Her skin was blotchy and sore, a sore that look akin to a cold sore was making a appearance on her top lip.
After a bit of a chat, I headed for home. I have to pull in before I left the car park. It had only be 23 day from that horrible night and my heart and soul is being hit hard by seeing this happen to her.
*Ok, maybe not but she is on 8 tablets a day.
Back to work
My mobile sprang into life, sounding my first day back at work. As normal I roll over and snooze it. Not much was said when I was driving around, when I got back to site, comments where a mix of are you feeling better. and oh I heard about your step daughter, how is she.
I know they meant well and it must be hard to chat to some one that had the crap I have had over the last few week but I felt like saying “No i'm in agonizing pain that why i'm flipping working! Idiot !!!” to the are you feeling better and “she is fine, having chemotherapy for leukemia. Losing her hair, looking like shit.!!! Idiot” to hows Kim ones.
I did not, as I did not have the energy to get upset about it, after all they were trying to show they cared.
I got though the day (just) and headed home, I had food and headed off to See Kim.
She had lost even more hair, her bed look like it had been used by a molting dog. Patches of skin appeared though the hair that was still holding on to they home as long as they could.
She was down as another problem has arrived, a rash. Kim comment on it is one that cant be blogged as it too rude, the gist of it was 'this rash is very annoying. I wish it would go away' I will leave you to imagine what she said.
As I head to the landrover my soul is worn a bit more, The pain of seeing her so ill hurts a bit more .
A lone tear runs down my face.
I know they meant well and it must be hard to chat to some one that had the crap I have had over the last few week but I felt like saying “No i'm in agonizing pain that why i'm flipping working! Idiot !!!” to the are you feeling better and “she is fine, having chemotherapy for leukemia. Losing her hair, looking like shit.!!! Idiot” to hows Kim ones.
I did not, as I did not have the energy to get upset about it, after all they were trying to show they cared.
I got though the day (just) and headed home, I had food and headed off to See Kim.
She had lost even more hair, her bed look like it had been used by a molting dog. Patches of skin appeared though the hair that was still holding on to they home as long as they could.
She was down as another problem has arrived, a rash. Kim comment on it is one that cant be blogged as it too rude, the gist of it was 'this rash is very annoying. I wish it would go away' I will leave you to imagine what she said.
As I head to the landrover my soul is worn a bit more, The pain of seeing her so ill hurts a bit more .
A lone tear runs down my face.
Hair today Gone tomorrow
Spend most of the morning and some of the afternoon running around doing the usual stuff that keeps a family going. It was time to head down to see Kim, on the way out I notice it is the 23 November. That means its 18 days since Dr L gave us the news and 13 days since she started chemotherapy.
Clean hands, on with apron and into see Kim. She looked upset my eye wander down to the beds table where a mound of dirty blond hair laid. I could feel the sadness build as she was loosing her hair. The hair she loved so much, the hair that hid the hearing aids she needed to hear and behave just like a teenager with normal hearing. This need or want to be a normal teen that won her awards. She will have to come to terms with having her disability on show along with the leukemia attacking her body.
Kim was not in the mood for a long conversation, nether was I. So we had a broken uneasy chat, as I installed the Freeview box and hoped it worked, it did. Now she could get her fix of Hollyoaks.
As I walk to the landrover, I feel so low, It is so horrible to see her hair going, to see her drained and sad. It wears on the soul.
A tear runs down my face.
Clean hands, on with apron and into see Kim. She looked upset my eye wander down to the beds table where a mound of dirty blond hair laid. I could feel the sadness build as she was loosing her hair. The hair she loved so much, the hair that hid the hearing aids she needed to hear and behave just like a teenager with normal hearing. This need or want to be a normal teen that won her awards. She will have to come to terms with having her disability on show along with the leukemia attacking her body.
Kim was not in the mood for a long conversation, nether was I. So we had a broken uneasy chat, as I installed the Freeview box and hoped it worked, it did. Now she could get her fix of Hollyoaks.
As I walk to the landrover, I feel so low, It is so horrible to see her hair going, to see her drained and sad. It wears on the soul.
A tear runs down my face.
routine starts
Back to work Monday. Today though is back to hospital, not for my stones but to resupply Kim with clean clothes and new reading material. She was looking drained, sporting a bob hair cut that will help with the shock of hair loss, which lucky had not started to her lovely dirty blond hair.
She complained about the food, the boredom of being stuck in the cell that staff call a Isolation room. The TV only had the basic 5 channels to keep her company.
The life line to the outside world is a landline phone and the Texts on her mobile phone. The only people to ring on the landline was me and shell. Kim hated using Voice on phones due to her hearing impairment.
On the way home I wonder if the TV signal distribution system supported DVB* as I have a cheap Freeview box at home . At least there would be more choice of what to watch for her.
I arrive home drag a big bag of washing out of the landy into the kitchen for shell sort and clean. Shell has cooked tea for me, and we go into the front room. To chat about how kim is until casualty comes on.
*Digital Video Broadcast. Freeview for the less technical minded
She complained about the food, the boredom of being stuck in the cell that staff call a Isolation room. The TV only had the basic 5 channels to keep her company.
The life line to the outside world is a landline phone and the Texts on her mobile phone. The only people to ring on the landline was me and shell. Kim hated using Voice on phones due to her hearing impairment.
On the way home I wonder if the TV signal distribution system supported DVB* as I have a cheap Freeview box at home . At least there would be more choice of what to watch for her.
I arrive home drag a big bag of washing out of the landy into the kitchen for shell sort and clean. Shell has cooked tea for me, and we go into the front room. To chat about how kim is until casualty comes on.
*Digital Video Broadcast. Freeview for the less technical minded
Ghosts
As I lay on the bed my mind floods with thoughts, even when resting my mind is not at rest. One stuck in my head as needing a decision soon, the Ghost from my past. Does it need to be aired, would it be damaging for anyone else to know, what affect would the moral of shell. A lot of confused thoughts about the pros and cons of putting this ghost on show to the world.
The Ghost is well a ghost. Of my very good friends from school. Aged 13 he was not well, pain in his one hip, the visit to get it check out changed his life. He had bone cancer and I seen him go though the treatment, the hair loss. To the last time I saw him alive.
I walk into a hospice some where in Shrewsbury, into a room where a waxy looking version of my lively friend lies on a hospital type bed. I say hello to him there is no movement in his body or closed eye, his mouth moves just a bit.
On the table next to the bed laid a book he was reading, almost finished, less then a chapter left to read. I pick up the book and started reading it to him. When I finished the chapter, I said good bye and left*.
That was the last time I saw him, he died 1 day later on boxing day.
I decided at the moment it was in shell best interest not to bring it up.
* It still bring a lump to my throat and a tear to my eye to talk or write about it even now.
The Ghost is well a ghost. Of my very good friends from school. Aged 13 he was not well, pain in his one hip, the visit to get it check out changed his life. He had bone cancer and I seen him go though the treatment, the hair loss. To the last time I saw him alive.
I walk into a hospice some where in Shrewsbury, into a room where a waxy looking version of my lively friend lies on a hospital type bed. I say hello to him there is no movement in his body or closed eye, his mouth moves just a bit.
On the table next to the bed laid a book he was reading, almost finished, less then a chapter left to read. I pick up the book and started reading it to him. When I finished the chapter, I said good bye and left*.
That was the last time I saw him, he died 1 day later on boxing day.
I decided at the moment it was in shell best interest not to bring it up.
* It still bring a lump to my throat and a tear to my eye to talk or write about it even now.
Stones away
Shell told me, that the way I was when an attack of the stones moving happen, scared her so I am really glad she was not here for this next. It would of scared her to beyond breaking point.
The attacks where the stones moving from my kidney to my bladder. The next one would be the exit of the stone. Blokes just think about that, right I will give you a second to wipe your eye and uncross your legs.
I am following the doctor's advice, and drink lots and lots of fluids couple that with the medication for ureter dilation. I was urinating like mad, if it was an Olympic event I would have been holding the gold medal.
Sitting in the front roombeing bored by watching day time TV. Time to visit the loo. Upstairs to the bathroom, I start my business, about 2 or 3 seconds in I get pain in my groin and the urine flow slows down a lot. The pain builds to a point where I am nearly double over the toilet, on my knee groaning, screaming. Tears running down my face and the pain and discomfort travels as the stone make it way from my bladder to the outside world down the urethra of my penis.
It took a second to travel from my bladder to the outside world but it felt like a lifetime. Now happy that my passenger is no longer with me I head for a lie down on the bed, and let the colour return to my face.
The attacks where the stones moving from my kidney to my bladder. The next one would be the exit of the stone. Blokes just think about that, right I will give you a second to wipe your eye and uncross your legs.
I am following the doctor's advice, and drink lots and lots of fluids couple that with the medication for ureter dilation. I was urinating like mad, if it was an Olympic event I would have been holding the gold medal.
Sitting in the front room
It took a second to travel from my bladder to the outside world but it felt like a lifetime. Now happy that my passenger is no longer with me I head for a lie down on the bed, and let the colour return to my face.
First day
AAAAAAAAAAAARRRRRRRRRRRRRRRRRRRRR. Holding by back at stupid O'clock in the morning with a kidney stone moving is not good.
The sweat is pouring off me, I reach for the Ibuprofen and down two. As they kick in I dose back off.
In a sleepy haze, I see it day time. I go to the loo, and head back to bed. Its about ten in the morning, I am so tired. I curl up and it the pain hits me again, I drag to pillow into my chest biting the top of one of them as I growl, Fuck, bastard, fucking stones.
I am doing this there is a worried figure on the landing, Shell. It must be hard for her to have me making sound akin to labour. And having kim in hospital. Just one of these events is enough to deal with without having both going on at the same time.
The pain passes, I head down stairs. Shell is on the phone to kim. I say hi to her and look for some breakfast. After Shell finished on the phone she ushers me into the front room to rest. I don't want to sit down I got kidney stones, a small minor inconvenience. Its not like I have smashed my legs into 500 bits or dieing from a serious illness.
Shell appears with a coffee and toast, I do wonder what it is like for her to have two loved one ill, I know I got it hard with the fucking inconsiderate stone that pick that bloody day to make it present know.
The great escape
I make good my escape, with the aid of the bus stop on site. my defender is on the other side of Shrewsbury, along with its keys, I call Mat whist awaiting for bus to arrive, for 2 reasons, 1 see if he is in, 2 find out what bus go out to his house.
I arrive at his, First words to me were “ you look better than the last time I saw you bud” After a coffee and a call to Shell, I headed for home. I need not worry about Kim as my parents decided to go to the hospital anyway and visit her.
The drive back was one of mixed emotions, that were difficult to separate. Relief for being out of the hospital, excitement about seeing shell and the kids. Mixed with worry about kim, scared about how we where going to cope or not and a couple of other emotions I still don't understand to this day. The journey up the A5 was uneventful. The last couple of mile where the longest.
I pull into the driveway, head into the house. Steph launches herself at me with a scream of “ Daddy “ I grunt at her impact and hug sent pain shooting out from my sore kidneys. I can't shout at her she is very pleased to see me. As Shell is. I settle down into the sofa, shell sit next to me and we talk about my kidney stones as I check emails and change my Facebook status to ' is out of hospital, damn kidney stone trying to emigrate to bladder'
I sit there looking around, thing are normal but you know they are not. Its a weird feeling that. Knowing there is a loved one, fighting for they life and I am sitting at home with a cupper.
The big question is do I tell Shell about a ghost from the past that weigh on my mind??
hospitalization- Part 3
I get stirred into life by the sounds of breakfast and observations*. Ok the breakfast is not 5 star, luckily it cereal so I can rest my sore arm with the venflon in it.
A nurse comes around to do my observation. They are fairly normal, if you can call me normal. I comment about the venflon and was told they would not remove it yet. Out for a smoke then wait for Doctors around.
Lets skip the boring bits of being stuck in hospital. Hits fast forward. Lad across the way up on walking frame, more comments on pain of venflon, visiting kim, feeling helpless. Wrapped up in the thoughts of kim.
Hits play.
Time for a MRI** scan. On the scanners table I slide in and out, with the induction sounds of the magnets. Day dreaming about my steel toe cap boots taken flight and flying though the control rooms window into the scanner, yes I know it could not happen under normal operating conditions.
Hits fast forwards Hits play
I am sitting in the smoking shelter, the pain is still shooting up from the venflon to my shoulder. I forgotten how may time I commented on the problem, and was wondering if it was to do with the stunt my dad pulled with the hat.
I have tears in my eyes I don't know if it to do with kim or the pain I am in. A nurse came and sat down she is off my ward. She asked what was wrong so I told her about the pain.
Been back on ward 10 mins venflon removed, thank god! Next time I have to have one in I will tell them to get lost, maybe in stronger terms!!!
Hits fast forwards Hits play
The consultant's junior Doctor appears, talks some medical crap. Tells me I got kidney stones and I will get a letter for an appointment in 6 weeks time†. That I am going to have some medication and when I get it I will be let loose on the world one more.
I pack, all 50 second of it and head out for a smoke. He forgot to say one thing, he ordered the medication before coming up to the ward. I am greeted by a nurse on returning to the ward, she explains the medication to me and discharges me.
* Checking of Blood Pressure, Pulse, Temperature and other thing Doctors want checking.
** Magnetic resonance imaging, Look like over sized washing machine with big electro magnets inside.
** Magnetic resonance imaging, Look like over sized washing machine with big electro magnets inside.
† Make a note of this 6 weeks
hospitalization- Part 2
I headed back up to the ward. It was getting close to Visiting time. Dad arrived saying Mum visiting Kim first. After a while mum appears. Telling me Kim been making jokes about my stones. At least my problem is amusing to someone. At the end of their visit I walked down with my parents for a smoke. I waved them good by, and headed back to the ward.
I am sitting on the bed, a bloke in my bay is trying to attract the attention of a nurse. After about 8 minutes my caring side get the better of me. So I ask if I can help. He had broke his hip in a fall and could not get out of bed to go to the loo and wanted the curtain around his bed closing so he could relieve himself. I am only happy to do this. One less job for the nursing staff.
I talked to him. He did tell me his name, that has been lost in my weird memory. Which is sad. Nice chap used to work in maintenance at the hospital and sails in a mere near Ellesmere.
It was time to turn in for the night, I was not ready to sleep. The bed by the window was nice as everyone else drifted into the land of nod, my mind was a wash with thoughts, feelings and emotion that and the pain running from my venflon to my shoulder.
I looked out over the A&E entrance entered though earlier in the day and the ambulances arriving and departing. I feel so numb, so disconnected with the world outside the window. A world getting on with daily life. After a while I laid back on the bed and drifted off to sleep.
There is someone next to me, I open an eye a bit it still dark out side. That person is a nurse holding a B.P cuff*, Just as she was going to put it on my arm I said gently “hi” and opened my eyes fully. This poor nurse jump in surprise. “Whoops did not mean to do that, sorry”
After the very early morning health check, I drifted back off to sleep.
*Blood pressure cuff, a band that goes around your arm that feel like it trying to squeeze your arm so hard it going to fail off.
hospitalization Part1
After my Eastender's moment. I phoned shell, got Alec to park my Defender on Matt's drive. I'm still in A&E. Awaiting transfer to the ward. My name on the 4 hour screen changes to red, I had been in the dept for over 4 hours when the porter come to take me to the ward.
As I am being wheeled up to the ward in wheelchair, I wonder why I just cant walk. My legs are fine, I have been walking fine. But a porter has to wheel me up to the ward, how embarrassing. I could feeling my face going red.
On the ward, I was being booked in when the Kim lead nurse turned up on the ward, The funny looks you get when a hematology nurse from ward 23H turns up looking for you. I do wonder if they thought she was there for a problem with me. In a little office on the ward. We got down to business. Signing forms talking about Kim's treatment, my illness and its timing.
By the time we had finished. My dad turned up with nightwear and it other bits you need to during a stay in hospital. A swap was taken from my nose to test for MRSA during this dad waves the hat I have with me with the name of the first aid organization I volunteer for on the front. Thanks dad!!
I had a bed near the window over looking A&E, Dad had gone. I found there was no earphones for the bed radio system. You know the ones just tubes no electrical bits. I look around and wonder if I could find the following one oxygen tube, medical tape, and a pair of tuff cut scissors to make some earphones.*
With boredom setting in I when for a smoke then headed up to see Kim. I was washing my hands, one of the staff is looking at my wrist the one with my patent tag on. As I enter the isolation room Kim chuckles at me and says “what you like”. I grin and reply don't start. I sit down to to talk with kim and watch tv, as I do I wonder if this pain running from my venflon into my shoulder should be there.
*I will have a go at doing that one day.
Am I in eastenders - Part 4
As I get into the cubical a wave of pain reminds me that I'm not well. As I slide onto the bed the thoughts of Kim where blocked out by the pain and the tiredness that filled my body. As I try and fail to get comfortable on the bed the time starts ticking for the A&E dept.
I lost track of time. The medical shock that my body had gone though had taken it out of me. I was dosing off. When I went to the loo I knew I been there for just over an hour from the four hour target screen*. Test happened, bloods, x rays, etc.
Placing the Venflon was a difficult thing. After the multi able failed attempts to get it into the back of my hands, although it felt like it was trying to though them. The member of staff gives up and puts it into my right arm. Due to the pain I'm in I don't realize the how much I would come to hate that Venflon.
I look up at the X ray machine, humming away above the table. The hum changes tone as it takes a snap of my guts and other internal organs. As this is going on I am wonder about what happening with Kim. What Shell is thinking about this, and should I smile for the X ray camera. How the hell the last one got in there is anyone guess!!
Back in A&E I have a wave of pain in my back and the feeling of a full bladder shorty after. Wandering back from the loo I look at my name on the Four hour target screen, I had been in their lovely care for 2hr 50mins. Oh well, smoke and phone shell I think. Quick note in left the cubical and outside.
There I stand, hospital gown, unzipped fleece, work trousers and steel toe cap work boots. I think it will be in the next collection for the discerning patent. Yeah right! I look a bit stupid but I really did not care. Shell tells me Kim finds it funny, trust her and thought I was unwell. I could hear shells mum in the background. I just felt so helpless, stuck in A&E until they knew what was wrong with me.
I was lying on the bed in the cubical when the A&E doctor appears. She smiles and tells me they know what wrong. I have Kidney stones and I and going to be admitted. She leaves for the time being. I lay back look at the ceiling and think
AM I IN EASTENDERS... Duff Duff Duff (theme tune continues) fade to black.
* A big screen that puts unneeded pressure on to over worked A&E Staff to get 98% of patents out of A&E in under 4 hours.
Am I in eastenders - Part 3
The Blue lights tint the living room ceiling as I think about the readings. Blood pressure error less than readable, Oxygen level 94%, Pulse 30 bpm.* my god this is not good. A member of the ambulance service arrives beside me and assesses the illness**. He stands up with a look that says, 'Hospital investigation'. I close my eyes for a second when I open them there is him Matt and two crew. Standing side by side, like the four horse men of the apocalypse.
I am told what the paramedics† face said. I needed to go in for further investigation. My heart could not sunk any lower, if it could of it would of.
I walked to the ambulance, unsteady and in pain. And sit down in the chair. Mat puts my bag and coat into the ambulance and the door slides shut with a clunk. The attending crew member pulls out a blue bag. Entonox a pain reliving gas. And starts to ask me question, I already know them as I am medical gases trained. So to save time I told him that I had no contra-indicators, Know what is it and how to use it.
As I move the mouth piece up to my face, I wondering. I have given this drug to many people over the years in my volunteering. But never needed to use it myself. And now I am going to find out what it feels like to use. Into my mouth goes the bite bit and I start to breath it in deeply.
Wow, I check I've got my seat belt on to hold me to the chair, I'm sure my bum is lifting from it. I feel like I'm floating. The vehicle moves off and the attendant start asking the usual question. Bloody hell I sound like I'm drunk.
I am sucking on it well. That means one thing. Taking too much of it into my system. Arrrr, Itchy teeth first symptom of having too much. So I stop, the attendant tells me to carry on using it and nods when I tell him I had too much, I got itchy teeth. They stop and I carry on with it, a bit of a mistake.
The feeling sick part of having too much arrived, I pull out the vombag†† that Mat gave me when I was in his front room. And proceed to umm, use it. Ambulance crews are very happy when you don't cover there vehicle with your breakfast or any other meal of the day. I look up after finishing to see him holding out some tissue. As I wipe my mouth he asks if I feel better for it as I look better for it. I did. I saw myself in a refection and I was look a bit more heather than before.
The ambulance pulls up at A&E. As I get off, I look up at the window of the Isolation room Kim was in and wondered, how my illness would affect looking after her. As I am wheeled into the building my thoughts turn to whats wrong with me.
*Health Oxygen levels are 99 to 97% and 60 to 80 ppm (beats per minute) at rest. Off the top of my head
** I will save you from the boredom of what I remember of it
† I think he was a paramedic
†† vomit (sick) bag
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.
* IV cannula / peripheral venous line
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 5th 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.
Leukemic Step Child
I am Dave, and this Blog is the thoughts, feelings and memorises of a Step dad with a step daughter suffering from Leukemia.
After months of deliberation about to blog or not to blog, and weeks of writing it time for it to go live.
After months of deliberation about to blog or not to blog, and weeks of writing it time for it to go live.
Subscribe to:
Posts (Atom)