I can't help it but blood is thicker than wine. The only reason why I can stay home to be nursed is because Mom and Melvin are here and because I have a professional team of home nurses looking after me. The regular nusing companies are a disaster, but I have found one called Buurtzorg with a modern concept that works really well. Buurtzorg has small clusters of office units around the country. The clusters are made up of nurses, each one of them a freelancer with the full responsibility for clients from beginning to end. They cut a lot of red tape, saving time and attention for better care for their clients. A Dutch news programme made an item about them and Buurtzorg asked me to participate. I did! And all of this in a week in which I really wasn't feeling well at all.
Though at first I had the impression that the item was going to be a diluted message, I have to honestly say that Buurtzorg looked pretty good on TV. It was fun to be involved in PR and Communications again.
Chech this out:
Nieuwsuur, Thursday 23 Dec 2010. Start watching at 15'50".
I write this post with mixed feelings of sentiment. Looking back I seem to have gotten stuck in time somewhere at the beginning of the year. Kiara and I had had a wonderful Christmas last year, first with Marcus and his boys and also with my family. I remember us pledging that there would be a next year together. It was a happy Christmas.
Then the new year started in which Kiara's musical Amandla Mandela was in full swing. Despite a new pin in my arm I tried to go to as many of Kiara's shows as possible. There was one specific time that I felt so weak that I went to get my wheelchair in the intermission. I wondered if I would make it through her shows.
The cancer has progressed and a rather high level in the back, devastation is no longer postponable. As usual my inner radar told me something just wasn't right. After intensive diagnosis the neurologist told me that I am to expect to loose all functions from the bottom of my chestbone downward pretty soon. All my efforts to walk have flown out the door now.
As things go Mom and I got caught up in the medical carrousel last week. Tests were done, radiation therapy was given, meetings were held, my pain was managed etc. and eventually, for the first time, I was given a family room on the oncology ward. I couldn't help noticing that I was the liveliest patient there, not to be interpretted wrongly, because I was one of their worst cases. I would have never been given that room otherwise. It was comfy there and Mom was able to spend the night there with me. What happened in that room could best be described as private, I guess. I can't describe what happens between a mother and a daugther and how confusing that gets when your own daughter also comes by. The dynamics of caring, sharing, protecting, and wanting to ease the pain for each other are very complicating. Kiara visited on Saturday and we had our talk. It gets harder each time but she makes it easier for me with her incredible capacity to deal with tragedy. I am so proud of her level headedness, her intelligence, her ability to plow through a mourning proces. She uses maths and her favorite things for comfort. Focus somehow eases the pain. Kiara went home with the Kleps who took her into their home lovingly. She was OK. Mom and I spent another 3 days in the hospital. I underwent a radiation session and the Docs wanted me there for observation. I made use of the situation to have my first shower in almost 4 months. It was so nive to feel the water on my skin that the instant it touched me I cried. I cried for a good hour and felt so good afterwards. (The showering is lying down on a special showerbed).
I came home in a winter wonderland. My house looked like a fairytale cottage. I haven't seen this kind of snow since 1985. I remember that that year I had pain in my knees and that they had found week spots on my Femur. Could that already have been the cancer? When I came home Mom and Melvin swapped shifts. I had come back as another woman than the one that left on Friday. We had no idea what we were into. Even all the nurses, physical therapist, and my GP were so blown away, that we decided to just go with the flow these two weeks to see where exactly we are at. We focussed on Christmas. We have to get it right this year. My home was the opposite to Scrooges... it was all but Humbug.
Had radiotherapy done to TH5 and TH6. In the hospital to monitor swealing and to wait for a CT scan of S1. Then home on monday. was also administered a bone fortifier by drip.
Mom is with me now and Kiara came to see me this afternoon. Going through the motions
Today I was once again admitted to the hospital for an Iodine treatment. The past two weeks I have had a lot of body-functional complications and new types of pains. I have had to start to catheterize and am finding it difficult to control but also to feel bowel movement. I still have been managing to stand this week, but I was so winded. I thought at first that this was because of the new tumors in my lungs. The Dr. had called me to let me know that since July there has been a lot of spreading of the cancer going on. I went from a few nodules in the lungs to an amount that they weren't able to count any more. This in both lungs. As I practiced my Physio more and more it started to hurt in the rib area. I thought at first that I was me straining my muscles, but by Wednesday evening I started to have a hunch that it was the same pain caused by the compression of the TH 6 vertebra that was operated on earlier this year. I called Lips and requested a meeting with a neurologist before I started any Iodine treatment. And that is precisely how it went down. In the afternoon they did some imaging in the MRI scan. I was in sooooo much pain because the vibrations of the sound were strumming my painful nerves for a good 30 minutes or so.
2 hours later Dr. Lips broke the news to me, together with Dr. Van Schie that there is progression of the tumors in TH 5 and TH 6 and that basically it is such a mess that they can't operate any more. They will try to do some radiotherapy on it to buy some time. In effect this means that within days or weeks I am going to turn paralysed from the breastbone downwards. This means that I won't walk again, but it could mean that it will be easier to sit with vigorous paintreatment which wouldn't work with the previous situation.
From there on the expectancy is that my bodily functions in that area will slowly start to shut down. To make sure that I am understood I need to tell you that this is technically speaking the beginning of the end. Now to really confuse you...I have not been given a prognoses. My Dr. says he can't because my medical history shows that I have an exceptional way of getting back on top of things. And this factor is so determining that by giving me a prognoses based on the medical facts, he would be cutting me short. In another case with another patient, the patient would already have died 4 times, and given where I am at now, they would be told they have 3 to 6 months left. Personally, I am feeling like I have more. I have to see my baby girl to High school and I have an appartment to move into. In Dutch we say, weeds never wither...Oh well. Taking it from here.
How I feel? I feel devastated. I am not ready to give up on life. I have too many things to do, too many places to go, and too many people that I really need to be with. Telling your 11 year old child what is going on is the worst pain anyone can have to go through. We had a huge snow storm here. I was lucky to make it to the hospital. I have never seen so much snow fall at once! Maybe heaven was crying frozen tears? After hearing the news Kiara had a huge snow ball fight with all her friends. Sounds like healthy therapy to me. Thank you so much the Klep family for loving my baby like she's your own. This night was not easy.
I don't know what the next period will bring and if I will find the time and energy to write. But if you don't see me here you can catch me on Twitter from time to time as it's easier to write in 140 characters for me. Look me up under @AishaHunkar or just simply click the Twitter button on this blog.
I do owe you two stories though....one about my TV appearance that is coming up, and one about #Twanniversary, my online virtual twitter anniversary party that was sooooo cool. Check out the #hashtag if you can read Dutch and have Twitter.
In the meantime I want to share a fragment of Radio DJ Anita Undercover's program on Future FM. Start listening at 12'30". I'm sorry, it's in Dutch.But it's about the way I use Twitter and how I inspire people to really LIVE. She says that I have mastered the art of using Twitter's capacities to the fullest an also to benefit my life.
Today I am off to the hospital again for a radioactive Iodine treatment. Back into quarantine. This time Mom is coming with me again. Should be out by Monday. But I have so much more news that I hope to write at least two more posts this weekend from my hospital bed.
Hi, my dear friends all over the World. I thought I'd post a small message here as I have been unable to keep up my blog due to my health situation. I know that many people have been worried, and rightly so. The last couple weeks have been a real ordeal and I have needed all my energy to get through this. The good news is that may pain has deminshed quite a bit. But my body is failing me in a lot of different ways. The Doctors have found that the cancer has now spread to my lungs. This was a huge psychological blow. At the moment I need to catheterize (hopefully temporarily). I lost weight and am unable to eat at all. I have lost approximately 20 pounds in 3 months. I am however slowly getting back on my feet. Last week I got up and walked 12 whole steps. Mom and my brother Melvin have been caring for me 24/7. They are so wonderful and I am so greatful for such a supporting family. Luckily I still get to be a mother to Kiara! :-). I Still looking forward to the little things in life that make me happy. Though it's been really hard, I have managed to keep my fighting spirit up. With regards to visitors, I do miss you guys, but I still experience that a visit is very energy consuming. If you do wish to visit, just drop me a line and I'll see if we can work something out. Take care everyone!
The past weeks it has been too much for me to write my blog. I have needed all my energy to focus on getting better. too much has happened to write it all down here but I will try: After my visit to the hospital for my first check up after the RFA I really needed time to recuperate. After a couple of days I picked up my Physio regime again and found myself standing in no time. I made a little progress and actually got to the point that I took twelve steps again. The strain was huge though and every time I tried something new in exercise I found that I was straining a muscle elsewhere. I have been able to maintain the standard but I haven't actually made big steps.
My visit to the hospital didn't really enlighten me. They haven't a clue why I am in so much pain. They did tell me that they had only seen this reaction once before and that I should assume that in good time the pain would deminish. It did in the end but it took weeks. And I am still in pain, but it is less excruciating now. The morfine-like drugs are now for permanent use. Couldn't manage without the painkilling effect.
Too Little The over all change has been too little. The huge cramps I had before had been replaced with areas with loss of sensation and other areas with more nerve pain. On a whole it did become easier to move. However there was too little to work with to go back to Rehab. Dr. Bussemaker from the Trappenberg's attituded turned right around. She has been in close contact with me since then and has been willing to help in many ways. I myself at one point had to say that at this rate, there was too little potential to move ahead to rehab. I decided that for now I would do what I could at home, so that I could at least be with Kiara and we will see what the future brings.
This meant that my family had to step up to the plate. Mom and Melvin (my brother), take care of me alternately. We are talking about 24/7 personal care which was only taken over for a period of 2 weeks by Adrienne my sister who was able to come over from France. The rest of the time Mom and Mel have had to put their lives completely on hold. Once again the social system in Holland has failed. For this kind of professional care at home I need to be declared terminal (that means that the procedure of dying has started) before I am entitled to the hours of professional help. If I am not terminal I have to go to a special home where I could get the care that for instance old folks would get. Those are the places where they give you precisely 3 diapers a day because more would be too expensive and rather than help you clean up after every bowel movement or pee, a diaper can reduce the amount of times that they actually have to work at your bedside. The Physical therapist would only come by 2 times a week and would most certainly not be concerned about getting me back on my feet. And what about Kiara. I will not have her living in an old croney's home. I don't have a huge stash of money hidden anywhere so...this is how things work out for me which is less than satifactory. We get help from Buurtzorg, a fantastic organisation and trained nurses come in every morning to wash me and check up on me. My GP has become much more involved and has taken over the general coordination.
Too Late
It is really too late to mention everything else that has been going on here. Besides caring for me, the family has gone to great lengths to clear out my house. When you are as sick as I have been the past 4 years you never get around to clearing stuff out. Slowly but surely your house changes into a warehouse where you can hardly breath. I got rid of so much junk that I think it filled two minibusses. My house looks much better, also thanks to all the help my friends and twitter friends gave me to fix up the outside. I was given a value statement 10K euros higher than before things were fixed up. This made it possible to get a good deal on my mortgage for my new house. I now own the new property! Funny cause the notary guy actually came to my house!(will post the pictures later) A special mention goes out to the Suiks the Van Geenens and @Jettemetet and @Emhateha who spent days of there spare time to get things done. Many more friends helped out in the course of about 6 months to make things possible. Many of them were people that I had never met in real life but knew from Twitter.
Another wonderful thing that happened was Jocie Zara and Helena's visit. That was one huge trip down memory lane. Jocie and Helena are my primary school friends from when I lived in Tunisia at the end of the 1970's. These amazing friendships have endured the years, the constant changes of addresses and the huge distances that we have been apart from each other. What is so remarkable is that you hardly need words to communicate because you all know exactly where you're coming from. This feel-good-sensation made me reallize that this was the feeling that I had so much been craving in my relationship with Marcus. And to be perfectly frank, I never did feel that. It gave me great comfort that that which I sought after, I already had. Friends who love me and who are willing to take me as I am. This picture was taken by Jocelyn. To me it illustrates that she was willing to put her fear aside to look at my fragility. Marcus has moved on and doesn't even pass by or give me a call anymore. His new girlfriend Nance makes sure that she posts enough information on her Facebook so that I know that she is already moving in with him. Well, what can I say...Good Virtue? I don't really think that I have lost too much, maybe just an illusion of my own that I had a partner who was willing to support me. NO! The best support has come from my amazing family. Due to my illness Mom and Dad have been driven to live apart for over 3/4 of a year. Understanding and love is glueing this famiy together. Cancer, if you let it, will not only kill you but it has the the power to demolish every form of relation, love, or security that we all need so badly. It is truely amazing, but also so painful to see that the seams at which my family is stuck together are as thick as solid wood. Cancer is devastating. Some times you just want to give-up so everybody else's life can go back to normal. The great paradox though is that if I die, their lives won't be normal ever again. So I keep up my fight, not only for myself but also for them. So Marcus, this once for you:
By far this has been the hardest post to write which is why it has taken me so long. Not only that, I really needed all my energy to get better. I need more space to inform you how I am getting along medically but will do so in following posts.
There is one little person that have got to mention. With all these things going on, Kiara has held up so wonderfully well. She has the capacity to deal with each hard blow that she gets. In the midst of many painful moments, Kiara keeps following her own course, bringing home straight A and B report cards and excelling in her Capoeira classes to a level at which she can now train with the adults. She is so proud and self assured that I can hardly believe it! In my eyes she has done a wonderful job in absorbing everything that I ever hoped to instill in her. After all that is what us parents try to do. At some stage you hope that they have reached a level at which, as a parent, it is safe to say that your kid will be OK and it will manage in life. This is crucial if you are this sick and you are not sure how much time you have left. Kiara is doing well and it is such a huge gift to be able to be home with her and still being able to be a mother to her. I truely feel that Kiara has already learnt so much much from life, that 'Yes!' she WILL be alright. My little sunshine propels me to keep moving on.. come on Mom, hang in there.
After 7 weeks at home after the RFA treatment, I am going to the the hospital for the first time for check-ups. Until now I wasn't able totravel due to the tremendous pain. I have managed to plan my meetings on one day, which requires CIA intelligence to accomplish it.
I am hoping that today will reveal some more information regarding my health. I am afraid that the dream team really doesn't know.
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
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.
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.
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!
I can't help it but blood is thicker than wine. The only reason why I can stay home to be nursed is because Mom and Melvin are here and because I have a professional team of home nurses looking after me. The regular nusing companies are a disaster, but I have found one called Buurtzorg with a modern concept that works really well. Buurtzorg has small clusters of office units around the country. The clusters are made up of nurses, each one of them a freelancer with the full responsibility for clients from beginning to end. They cut a lot of red tape, saving time and attention for better care for their clients.
them and Buurtzorg asked me to participate. I did! And all of this in a week in which I really wasn't feeling well at all.
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