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.
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.
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