Early Bird Rises to the Occasion

The last couple of days have been rather stressful.
Coming to the Trappenberg I was confronted with the bad communication skills of the VU hospital. For instance; they hadn't reported that I can not strain my arm for 4 weeks. Nor had they reported that I had already walked since the operation. Vital information like that can totally influence my treatment plan. Experience had had me worried in advance so I discussed this with the hospital. They promised to pass on the necessary info and when push came to shove, they didn't. This means that it will take at least half a week for me to correct the damage in the Trappenberg. They have put on the pressure for me here because I am difficult to treat at the moment and they want to see results in 2 weeks, if not I am out of here for the meantime. I am really pissed-off (excuse my French) about this.
On top of this, they have decided that I am now a neurological patient instead of a surgical or orthopaedic patient. This means that another team has to treat me. Therapist with whom I have worked together for 3 years and who know me really well, are no longer going to treat me. I hope to change this this coming week. The stress and frustration was on the foreground for me this weekend as I tried to fit in again. As usual, my case sticks out like a sore thumb. I am the only patient that gets moved around in their bed.

It has been wonderful to be in this environment again. (nature and fresh air). I have been lucky enough to get my own room. I am a lot closer to Hilversum which is great. (10 minutes by car).

Today I am off to the VU hospital for radiation therapy to T1 and the pubic bone. It's a way to get my mind off things I guess...because the stress of the transportation by ambulance and laying down on a hard surface in the simulator and during the radiation is much bigger than the stressing about the burocracy at the Trappenberg.

I would like to emphasize that I would be delighted if you want to visit. Do call in advance on my cellphone.

Trappenberg revisited

After a reasonably peaceful week at home I am off to the Trappenberg today.
I will start my rehab there in the hope to regain the ability to stand, walk and do some daily chores independantly again. I have no idea where this will take me but I just have to assume that the sky's the limit. The trick is, how do I convince my rehabilitation doctor of this.

Visitors are allowed outside of lunch and therapy hours. The address is:

De Trappenberg Huizen
Kamer B2
Crailoseweg 116
1272 EX Huizen.

If you wish to come, please call in advance.

Home today!

I get to go home for a week! I'm out of here this afternoon!

Yes, I'm alive!

People Get really nervous when I don't post any news! Even when I am straight out of arm surgery. LOL. (Cannot type!) So I will do my duty and write this post even if it kills me. However, I will be brief.

• Operation -succesful
• Leucocytes - Up
• Trombocytes - Up
• HB - Up
• Saturation -not quite 100%
• Blood pressure - Down
• Pulse - Up
• Catheter -Out
  
• Painkiller IV - Out
• 
  

All in all, it means that I am doing well and will shortly be out of here. It seems like I will be moved to the Trappenberg on Monday. In the meantime I am enjoying my cards from Twitter friends, and people visiting me! The status of my house hasn't changed in the last week, so if there is anyone out there desperate to help out please speak up!



























And to all my Twitter friends, guess which nurse is in the picture, That's right! It's Britney 'Rusinsky'Spears!

Surgery today

Morning all! As I wake-up today I am a little apprehensive. Today is the big day as I am scheduled for the surgery of my arm. Remember the operation in february when they placed the pin in my arm? Well the pin has moved from it's position which is giving me a lot of pain due to the fact that the purpose of the pin was to fixate the arm.

Today they are going to remove the pin that failed to do the job and are going to replace it with with a new, shorter and thicker pin. I don't like the idea that they have to redo an operation but I don't have much of a choice. Hope to hear from you all after my OP.

Just a strange little anecdote from yesterday....: I went for a PET scan yesterday which involves administering radioactive glucose through an IV which is used as a mrker for the tumors. So they gave me a new needle in my wrist and I suggested they would leave it there as I was to be in for surgery today and would need a drip!. The radiologist was concerned about the needle blurring her picture and refused to leave it in there. I don't know what she was thinking! How could a tiny needle be a problem if I already have heaps of metal in my body? Anyway, I gave her her way.
The scan lasted a good 40 minutes! And when I came out I was totally suprised that my hand was asleep. How was that possible in that position? And my whole arm was wet too, I could'nt have sweated that much! Then it dawned on me and I lifted my arm from under the blanket. A blue hand soaked in blood emerged from my bed. The artery had not closed up properly and had been leaking blood for nearly an hour...What a mess, it was radioactive too, which seemed to be the radiologists main concern! What a way to start the day! -Breakfast in Amsterdam!-

I will be returning to this room after my operation! Needing all the candles and prayers in the World!

PS: Joy, I am concerned that I haven't heard from you this week. Please give me a life-sign a.s.a.p.!

Friends are so valuable!

My friend Jocelyn had a dream. This is what she wrote me afterwards:

"okay now its really getting weird, had another dream just last night,, man you have got to stop starring in my dreams-- always got the lead too..

LOL this one was bizarre too, but this one was at my 20th college reunion I was using the restroom and Zara was trying to peep under the stalls and find me . and for some reason no one knew i was in there but i have no idea how zara felt that i was there...

anyway she was even smaller than now, like how she is now, just miniaturized and she was putting her head under my stall and a huge disgusting lobster/crab thing roach like creepy crawly thing crawled down the door and onto the floor and was about to bascially get on her..it was about her size exactly , it was huge!!! and orange...with claws..I was so grossed out and horrified and I couldnt get Zara to move out of the way, but then I heard you walking over ( I knew it was you by your voice, but never saw you) all calm, reach down and clamp your hand over it and say, "no you dont" , you picked it up and crushed it againt the bathroom wall by the sinks, and I am talking this thing was like a foot in diameter, it was so awful and you sorta had no fear, you just did what you had to do, it was CRAZY!! I woke up at 3am so yucked out by this creature.. and you were the one who saved the day!!!!

weird uh?"



I think Jocelyn saw me killing the cancer! Let's hope she's psychic!

Unplugged

Friends visit and bring me outside!


OK, so I've been busy checking-off the list! Here goes.

1. Lung infection - gone
2. Blood in urine - gone
3. Low trombocyte count - gone
4. Low leucocyte count - gone
5. Anaemia - I was given a transfusion
6. Psychological dip - moving upwards

What's still going on?

1. Arm operation on Thursday.
2. Possible bladder infection.
3. Decubitis.

What do I need?

Well it would be great to have more people visit. Particularily in the mornings from 11 to 13 hours. Do come, but do call in advance!

I'm Connected!

Connected, it's one of those fashionable words with a positive feel. I am experiencing another side of the word (connected). Here I am in the hospital looking back at the past week. I am really connected. I am connected to a IV containing my antibiotics, a two-way catheter which is flushing my bladder, I am connected to the TENS machine and perhaps I will receive a blood transfusion this weekend. What happened?

Two days before my radioactive iodine treatment we found blood and blood clots in my urine. Seeing as I had been using a catheter , the nurses weren't too alarmed. Blood samples were taken on a daily basis and by the time I got to the Department where my iodine treatment was to take place the doctors were alarmed. My blood-work showed that there must be an infection somewhere. Before they could treat me with the iodine they needed to make sure that it was safe to do so. They asked me if I had any idea what it could be and I told them that the only new problem was blood in my urine. When I told them about the blood clot and it's size, they figured that it couldn't be a problem in my bladder but that it must be a problem in my kidneys. To be on the safe side they had a sonogram made of my kidneys. In one of the kidneys it seemed as if they were three kidney stones. However, there was no obstruction. The doctors decided to go ahead with the treatment.

Mom came in with me to look after me as I have not mobilized yet. This meant that she was going to catch radiation, something I was not happy about but the doctors assured us that she would be fine and she chose to go ahead with it. What moms do to help the kids! I was feeling under the weather and went from bad to worse. By Sunday evening I felt so bad that the doctors came to check me out. I was administered antibiotics and diuretics as my lungs had fluid in them. Blood samples were taken, but the doctors believed that I had pneumonia. Everything else went okay with the iodine treatment and mom and I came out on Monday afternoon. I went to a brand-new department 4B , yet a new place to get accustomed to. We were off on a bad start. By day 2 it became apparent to me that no department was willing to admit me due to my radioactive treatment. It seemed as if the nurses had no idea why I was here and even the Doctor asked me why I was in her department. My patience was really tested when they forgot my antibiotics. Marcus had mentioned this to them and when I tried to reach them in the evening it took me three hours to get their attention. The, I think was a Russian one, nurse finally came to my room after three hours of waiting. I told her that I had not had my antibiotics that day. They had checked it off administration and refused to give me a daily dose. I told the nurse that I wanted her to sort out the problem and that it is not a good idea to stop taking antibiotics once one has started the cure. She told me it was my problem and my frustration and that she wanted to go home. I said, "I beg your pardon?". The nurse went ahead and repeated what she had said. I was livid! It took another nurse to calm me down. I went to sleep without the antibiotics and in the morning I addressed the matter. In the course of the week, because I had threatened to make a formal complaint, the nurse made her apologies, the nurse who had made the mistake acknowledged it and the Doctor got with my program.

So what else happened this week, medically;
· I got pneumonia.
· I got kidney stones.
· I turned anaemic.
· And my white blood cell count dropped.
To top it all off, the pin in my right arm needs to be replaced in a new to the scheduled surgery. It was not a muscle that had torn. Thanks to Doctor Lips an x-ray was made to check was wrong. Further strain could have caused a lot of damage.

I'm sure you can imagine that this week has been an all time low, emotionally and mentally. It has taken everything I've got to crawl out of his deep deep valley. For the first time in three years I wasn't sure I was going to make it. I have always been so afraid of infections. This weekend however it looks like I'm going to get over this.
Like I said earlier I had my iodine treatment last week. That means that I couldn't see Kiara for 10 days. I get to see her tomorrow, what a treat! How do you even start to tell your 10-year-old daughter the above.

Lots of suprises too though this week, my sister bringing me food, and Twitter friends helping out, like Henk who came by to bring my bed outside. The first sunlight in a month. This stuff kickstarts recovery, not to mention all the people working on my house!

Time-out

Last weekend, after my shoulder muscle tore, I had no choice but to take a brake from mobilising. I used the time to become myself again. Bye-bye Dexamethasone moustache and hairy legs, and Marcus was so kind as to trim my hair!






Not only did I nurture my outer body, I also nurtured my inner body and went to the hospital chapel to attend a service. They brought me there in my bed which was interesting.










In the meantime, at home friends have been working hard , helping to fix my home. We are moving along nicely!


























This week has been hectic with scans and doctor's visits. As of tomorrow I am moving to the nuclear department for my Iodine treatment. So no visitors until mid next week. Will communicate online.

Kiara's visit

What can I say? ;-)...

"You are my Sunshine,

My only sunshine.

You make me happy

When skies are grey.

You'll never know, dear

How much I love you.

Please don't take my sunshine away".

Written by former State Governor Jimmie Davis and Charles Mitchell;copywright 1940 and 1977 by Peer International Corporation.
This is one oe two official songs for the State of Louisiana.