15 September 2010

Many rivers to cross.

Just a short post before I enter OP again tomorrow. The last operation was succesful (Arm) but I have been in severe pain since. The pain is mostly in my pelvis and right leg and has been unbearable. What the cause is is not clear. I can only imagine that my positioning during the last OP changed the position of vertebrae or other bones. The pain that I am going through is mostly nerve-pain. All in all too much is going on in my life at the moment for one person to deal with. That would be physically as well as mentally. My battle against this dreaded disease is really tough and more than ever, it is asking alot from me.

orrow at 8 o'clock I will be expected at the Angio department. They will perform RFA treatment on my sacrum (rear end of the pelvis). I am pretty scared though Dr. Meijerink has calmed me down a bit. As usual I hope to win this battle too. I have been afraid of this treatment because my general health is weak. I am worried only about possible complications and not being able to win that fight. Precautions are being taken to avoid infections. That is the most important issue.

As far as Marcus goes, I know many of you have questions about what happened. All that I am willing to say is that despite our recent break-up he is being very supportive of me.

Another matter that has been bothering me is the fact that Dr. Bussemaker of the Trappenberg has thrown me out of the system. She is allowing me back in to the Trappenberg only if I pass her (impossible) test. She expects me to be able to perform all my tricks by next week Thursday. By tricks I mean that she expects me to be able to sit on the side of my bed, stand and make a transfer with a lift into a wheelchair. Those are the 'tricks' that I was able to do when I left the Trappenberg and she expects the same level of performance after 1,5 weeks with two major surgeries. As you can imagine, I am pushing myself to the limit to reach those standards (not good for me I need rest). I have informed my doctors in the hospital and they are enraged. They have taken over the handling and are arranging an admittance for me.
After all, I have shown that I can and will do the needed work and not only I but Kiara also deserves the best possible solution for a rewarding life.

Will be gone for a while and Angelique's request from the last post still stands.

I should be home this weekend if we can m
anage the pain and I will need the quiet and comfort of my home for quite a while. If you wish to visit me, contact me through Twitter or e-mail and I will see when we can meet again.

Once I am home I will continue to have visiting hours. I would like to ask everyone to not come to my home unannounced. I need this to be able to take this hurdle.

Last but not least, thanks so much for Tweepcare. Y
ou guys and my friends and my neighborhood have been amazing! Once I do get past this hurdle the next step is to sell my house so that Kiara and I can move on to the next positive stage...The Entrada, my dream castle!

Please say a prayer for me today and do click the vid!

09 September 2010

Back in hospital, no visitors please!

Dear readers,

This is to let you know that Aisha is back in the hospital, recovering from yet another operation. The operation restoring the pin in her left arm was successful. Aisha can be reached by regular mail at the following address:

Aisha Hunkar
Room 2c.36.4
VU Medisch Centrum
P.O. Box 7057
1007 MB Amsterdam

Aisha is in a lot of pain (not due to the operation) and desperately needs some rest. She has asked me to let you know that she will not be receiving any guests during her stay at the hospital. So if you would like to show your sympathy and support, please do so via the above address or by Twitter. As soon as she is ready to receive visitors again, she will let you know.

As a concerned sister I urgently request that you comply with her wishes. I wish to thank each and everyone of you for the support you continue to give Aisha. I join Aisha in expressing the wish that she will soon again be well enough to enjoy your company.

Angélique Hunkar

06 September 2010


If you feel the urge to leave a nice comment behind on the website of the RAV Regionale Ambulancevoorziening Gooi- en Vechtstreek, you can do it here. Please do not mention what they did for me (not everyone needs to know), but DO mention my name.

I left you with a cliffhanger in my last post. Yes, my relationship did end. People seem to want to know who ended it. Well, if you really want to know I did. I had a hunch that it was time to stop and I should have had that hunch 6 months ago. All in all I am not going to elaborate on details here. All I can say is that being sick does magnify every emotion.

All this happened in a really difficult week in which I had a lot of pain and have had to deal with great anxiety for the next two operations which the hospital has set up for me. The goal was to do both operations at once so I would only have to undergo anesthesia once. This however, is not possible as one is done in the Angio room (bloodvessels) and the other in the OR. Anyway I find myself co-ordinating my care again as I am trying to do both during one stay at the hospital. I have to call them in the morning.

As you can imagine besides the physical pain I have been on an emotional roller coaster this week. The man that I dedicated the rest of my life to is no longer a part of it. It was really hard to grasp myself but I put all of my energy into my therapy. Therapists Denise and Lisette were my saviours as they pushed me to my limits. They did this to boost me and small miracles took place. Also Antoinette and Anke, they were of great help. I worked on my art to keep my mind off things.

There was also Jolanda Dirken, another patient at the Trappenberg, who came to talk to me every night. Unfortunately for me this was her last week. I will really miss her!

Then there was my acquaintance Jacques Happe who turned up on Twitter and rapidly became a friend. He so kindly built me a Humus fest on Friday afternoon. Humus is a chickpea paste (middle east) that is very healthy for cancer patients. I had a lovely day with him forgetting all my sorrows and he sent me off with my ambulance at the end of the afternoon. Off I went to my home to be with Kiara for the weekend.

Waking up at home was wonderful! I have been eating very poorly but Jacques' humus kick-started me! Mom made me breakfast and lunch was the left-overs from my fest.

The point of being home was to spend some quality time with Kiara and to finish off the packing of my stuff that needs to be stored in order to be able to sell my house for a reasonable price. Melvin had already done some clearing out the week before. When you are sick, as time goes by, your home slowly changes from a home into a ware-house. As you can imagine, it means that I need to clear out a whole load of stuff. It just doesn't feel right when someone else does the clearing when you are not there. I am so greatful to Melvin (my brother) for clearing out my stuff and respecting my every wish. He came up to Hilversum especially so I could have a say about all my stuff. Mom and Dad helped him get the job done, but it was hard because all my friends (that help me so much) kept popping in. It drove me crazy after a while and I have learnt to keep the weekends that I am home for myself and Kiara as she ended up finding her peace outside. Thank you Jermaine for being her dear friend.

I am also trying to focus on a future and the best thing to focus on is my appartment building. A few weeks before I ended up in the hospital I made the papers with this shot as one of the possible future tendants of the Entrada in Hilversum. This week I received my first newsletter and they are moving along nicely with the first of the 5 flats that are being built. This is the current state of progress. They are starting to build my flat this month. I have to hurry up and choose my kitchen and bathroom which is impossible from my postion in bed. My friend Rachelle has offered to take care of all the meets and handling. So how do you explain what you want..to sum it all up we ended with a blue or brown bathroom with a touch of Mendini, totally adjusted to my handicaps of course.

Finally there is one little story I have to tell you: Because my Dr. in the Trappenberg refuses to sign the ambulance requests to go home in the weekends, the people at the ambulance department got really angry. I am talking about RAV Ambulance Voorziening Gooi- en Vechtstreek.
A few people from the department, encluding Yvonne who started this all, have decided to transport me home for free every time I want to come home. This would be every two weeks or so when Kiara is home. It means that they transport me when they are off duty and the boss has given them permission to use the ambulance cars. Well, if that isn't heaven on Earth.... I don't know... I may have the worst possible disease but I sure have my little angels. Kiara was allowed to ride with us when they brought me back to the Trappenberg tonight. She got the full blown tour of the interior. After bringing me back they brought her home again!