A post for my Dutch readers

Deze kreeg ik van mijn vriendinnetje Birgit Scheeve naar aanleiding van het bezoek van mijn vriendinnen uit de VS en Zweden;


Op een dag zat een jonge vrouw bij haar moeder thee te drinken.
Ze spraken over het leven, het huwelijk, over de verantwoordelijkheden in
het leven en de verplichtingen die volwassenheid met zich meebrengt.

De moeder roerde in de thee en zei bedachtzaam tegen haar dochter:
"Vergeet je zusters niet.
Ze worden steeds belangrijker naarmate je ouder wordt.
Hoeveel je ook van je man houdt, hoeveel je ook van de
kinderen die je misschien zult krijgen zult houden,
je zult altijd je zusters nodig hebben.
Denk eraan zo af en toe met ze mee te gaan en
dingen met ze te doen.
En onthoud dat zusters alle vrouwen betekent.
Je vriendinnen, je dochters, je collega's en al je vrouwelijke familieleden.
Je hebt vrouwen nodig.
Zo is het met vrouwen".

Wat een grappig advies, dacht de jonge vrouw.
Ik ben een pasgetrouwde vrouw.
Mijn man en het gezin dat we zullen stichten zal zeker alles
zijn dat ik nodig heb om mijn leven waardevol te maken.

Toch luisterde ze naar haar moeder.
Ze hield contact met haar zusters
en maakte ieder jaar meer vriendinnen.
Naarmate de tijd verstreek, kwam ze er langzamerhand achter dat haar moeder wist
waar ze het over had.
Als door de tijd en het leven veranderingen en mysteries in een
vrouw groeien zijn 'zusters' de steunpilaren in haar leven.

De tijd verstrijkt
Het leven gebeurt
Afstand scheidt
Kinderen groeien op
Liefde groeit en vergaat

Geliefden overlijden
Harten breken
Ouders sterven
Loopbanen eindigen

Maar 'zusters' zijn er, tijd en afstand maken niet uit.
Een vriendin is altijd binnen bereik als je haar nodig hebt.

En als je alleen door dat eenzame dal moet gaan,
zullen vrouwen in je leven aan de rand staan om je aan te moedigen,
voor je te bidden, ten gunste van je tussenbeiden te komen
en je aan het eind met open armen te ontvangen.
Soms lappen ze regels aan hun laars en lopen ze naast je.
Of komen ze om je eruit te tillen.
Vriendinnen, dochters, kleindochters, schoondochters, zusters,
schoonzusters, moeders, grootmoeders, tantes,
nichten en buurvrouwen, allemaal zegenen ze je leven.
De wereld zou niet hetzelfde zijn zonder deze verbondenheid tussen
vrouwen.

Toen we dit avontuur, genaamd vrouw-zijn begonnen,
hadden we geen idee van de ongelooflijke vreugde en verdriet
dat ons te wachten zou staan.
Noch wisten we hoe we elkaar nodig zouden hebben en nog steeds
nodig hebben.

No pain no gain

My last post was month ago. Since then pain has reigned. The pain is really indescribable but the best description I can give you is that this feels like I would expect a glowing hot rod pushed up your behind to feel like. I was transported home the Friday after my operation whilst my pain medication wasn't adjusted yet. I was given Fentanyl plasters and lollies (opiates) which are the strongest painkillers administered out of the hospital and even that did not help. This pain has dragged me through my lowest levels of conciousness, to the point that I was certain other people would have given up. I was feeling like the end might be really near, living one day at a time. I have lost so much weight that I have lost all of my reserves. Seeing as Dr. Lips prefers me to be 20 KG overweight, it means that if a really bad complication turns up now and I lose a lot of weight, it will be difficult to fight back.

I kept a low profile, few phone calls, hardly any visitors, no blogging and no tweets on Twitter by me. I had energy for one thing only and that was getting better. I had some quality time with Kiara which was both beautiful and confronting.

In the meantime I mourned the loss of my relationship. Marcus easily picked things up with his Nancy and seems to show little remorse.

On the brighter side of things, I passed the Trapp-test. As soon as my pain has died down I get to go back to the Trappenberg. Dr. Bussemaker is at least making an effort to repair the damage that was done. She is now keeping tabs on my progress which is very pleasant. A little birdy (never ever mentioning names) told me that my blog's impact caused quite some havoc at the Trappenberg. It was even discussed in the Management Team and some seem to think it was un-ethical that I mentioned the Dr.'s name. I don't intend to defend myself as this blog is about my life, how I experience it and what goes on in it. I have always mentioned my Dr.'s names so what goes for them, also goes for Dr. Bussemaker. My story about the past months is merely a reflection of what actually happened. I hope the havoc will do some good and that lessons can be learnt.
Remember 2 years ago when I had problems with Dr. Jiya?...well we solved them and got them out of the way. If things get better with Dr. Bussemaker I will be the first to report it. Moreover I believe that freedom of speech is still one of our virtues. I can't help it that I am a pretty good communications advisor and that my blog is read by an average of 600 people each week. All I can say is that people keep coming back to it, I must be saying something worthwhile.

This week finally it seems like the pain is slowly deminishing. They took forever getting the dose of the pain medication right. I am still training with the physical therapist and still manage to sit up and stand once a day. It feels like I will need some more time at home. I was struck by a bladder infection and now that that's gone a tendon in my arm is strained. After not eating for a week I am slowly starting to take in more food. I hope the trend can remain upwards for a while now.

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.

Tomorrow 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 manage 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. You 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!

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

Big-up

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!

Life changing moments

I haven't been able to write the last week. So much has been going on , but I have been in too much pain. The big news is that I am back in OP pretty soon. Since last week, the pain in my arm has been fragile. I had a wonderful birthday celebrating it on Saturday with friends from the neighborhood, but that was the same day that I realised something was really wrong. I spent the weekend at home and make sure I enjoyed the Sunday as well before calling the hospital. This was supposed to be a major weekend as I turned 42 against all odds. But by Monday morning I was certain that my left arm, had given way. The gentleman doctors deliberated as to what to do. By Wednesday I was given the choice, either we replace the nuts, or we replace the whole pin. Seeing as the RFA treatment was scheduled anyway, I decided that I would go for the least invasive option, and to see how that holds. This means that within two or three weeks I will be back in the hospital for surgery. I have been in incredible pain,.... in my right arm, but also to my hip. For the first time in all these years I have cried constantly from the pain.

It's 7 AM in the morning, and I actually slept last night. Why? This is the first day of the rest of my life. It looks like things are going to change. Tomorrow is the day that my long awaited matters arrives. Technically speaking. It should mean that the pain will die down. It also looks as if today is the day that my relationship ends. Cancer is hard on partners. As my partner so prudently pointed out, he still has a life and I don't. I have news for you, cancer is even harder on people who have to bear it. I don't know what life will look like at the beginning of this day, all I can say is that it really hurts. I have become a burden. Well, that's the last thing I Wanna be so, we'll see what the day brings, perhaps I'll be lucky.

Checking out to see if I can save my old life in any possible way....

To be continued.

Progressing slowly

Since the last post have been working very hard. I went from standing for the first time, to walking 50 metres. Swimming is also going well. I swim, 250 m in half an hour. Last week. I had a couple of sessions, radiation therapy. Somehow, I can't seem to get away from the hospital. Lately, I try to organise my trips to the hospital in such a way that there is always someone to accompany me.

I have become so familiar with the routine that little tricks like putting my stuff in a zip lock bag so that I don't have two worry about carrying a lot of different things, while I am being transported by ambulance. The transportation is very strenuous. Theadiation therapy was to my head and to my rib. When you arrive at the hospital. They position your body on a hard surface and by means of a CT scan, they localise the area that needs to be radiated. This is a very difficult process as precision is of extreme importance. They also use a mask to fixate your head seeing as moving a few millimetres could cause damage to healthy tissue. The mask looks pretty creepy, though it is of great importance to use it. The team at the VU hospital quite as disciplined as in the AVL hospital. They ended up positioning me four times and by the fourth time the machine crashed. This resulted me in having to lie down on a hard surface for an hour and a half last Friday. I am grateful know that Doctor Dahele is always present during my therapy. This is a criterium to be able to go forward with the therapy as far as I am concerned.
More trips to the hospital have been taking place. Yesterday I visited the neurologist and the oncological surgeon for further treatment. They have decided to go through with RFA to the Sacrum. It took a whole day to see the doctors yesterday, from 10 o'clock in the morning until six o'clock at night, when the ambulance finally came. Because I travel lying down, I am often placed in areas where the bed won't get in the way. Yesterday, they parked me in the room where the casts are moulded. Because I have to wait for the ambulance for hours, they admitted me to a one day patient department. The joke is that my view was looking out on to my last room in the hospital. Not really inspiring.

Kiara has been back from holidays with her father for almost 3 weeks now. She spent the last 2 weeks, doing all sorts of fun stuff. For instance, she went to Friesland with Aldith to see Jet. We know Jet from twitter. Kiara was able to camp their and they made boat a trip, a typical Dutch activity. Jet taught Kiara how to navigate and read maps.















Kiara's cousins also took her to the Efteling (a Dutch prizewinning theme park). As I gather, they had heaps of fun. In the meantime, life goes on, and I keep on working really hard. I keep practicing walking, swimming, and sitting.

Until I move more, daily injections are necessary to prevent Tromboses.

I Walk!

04-08-2010 I walk again. Here's a vid made today!:

Moving along

It's been two weeks since I talked to my doctor. An interesting fact is that my pulse has dropped from 105 - 120 to 93. The only factor which has changed is the amount of stress I was living with. I had check-ups this week with Doctor Lips, and my blood work looks great. Even my blood pressure is back to how it used to be three years ago. Looks like things are looking up for me. Besides swimming. I have proceeded on land as well. I can now sit a good 10 minutes on the edge of my bed. I have also started to stand using a lift. Once the lift has put me on my feet I am able to hold my weight, indicating that my legs are strong enough to hold me. Yesterday I tried to lift my legs are standing. Even that seems to be an option.This week. I have also started to try to get out of my bed on my own. I can almost manage it without help. I have been here now, five weeks and am growing into my routine. Steps taken seemed to be so slow. But @Tuxeltje on twitter has assured me that I am a long and very fast pace. It just doesn't seem that way, because I'm in the middle of it. let's just keep hoping for the best.They have also put me in a wheelchair during my standing sessions. I didn't sit for long, but that was the first step to some independence. I hope that the next couple of weeks I will be able to move around myself. Emca
Sport will be delivering my speedy to the Trappenberg, which is fantastic. It will mean that I can get around motorised!

The three weeks separation from Kiara are almost coming to an end. She will be home on Tuesday. Cant wait to see her as I have missed her so much. Three more days to go!