Buurtzorg

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".

Christmas Eve 2010

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.

I did! I attended her last show in Sittard and my sister Angélique drove us. By the time we got there paralysis made it's entrance in my life. Tumor mass in my spine was damaging my spinal cord.
We drove straight from the show to the first aid and I was admitted to the hospital that day, March 28. Since then it's been an up hill battle trying to defy cancer.

It all came to a screeching hault last weekend which looking back now seems like an unreal dream. I was supposed to have an Iodine treatment but wasn't feeling well. There were problems with my bodily functions.

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.

Life continues at number 1.

Speed post

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

Dooms day, in the end, doesn't stay away

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.

Iodine again

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.

Too Much Too Little Too Late

The new post is under the previous one as I started to write it before the last post. Please scroll down two posts.

Small news update while you have to wait for the real post.

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!