Timbuktu or Tipperary

Timbuktu or Tipperary, it doesn't really matter, which I choose, what ever the case it's a long way to go. My first month in the Trappenberg has been one full of action. Before I came I felt a huge dip coming up. After a quick analysis I learnt that it was my apprehension to start at the Trappenberg . I am now well into my third year of being a patient. They call someone like me an experienced patient. Crazy really, that such terminology exists. I know the system and I know the requirements for insurance companies. I also know how that leads to bureaucracy and mostly idiocies. There were two things that worried me about my transfer from the hospital to the rehab centre. One was the fact that I knew that the hospital was going to mess up with the assignment for the Trappenberg, the other fact was that I was sure they had not communicated my arm operation. I know you are thinking: Why wouldn't they do such a thing?

Well, every day exceeding the first five days of my admission in the hospital has to be paid for by the hospital rather than by my insurance. A six-week admission is a very expensive situation for the hospital. They will therefore try to transfer you to either a nursing home or a rehabilitation centre. In the case of cancer. They tend to want to send you to nursing homes because why on earth would you want to go through a rehabilitation process if you have cancer? I refused to go to a nursing home. They can't send you there if you don't want to go. That to me is the same as giving up. It was interesting because as soon as I suggested to go home for the last week before I could start rehab, I was able to organise it within an hour. It makes you wonder why on earth the Doctor hadn't suggested this herself in the first place.

Anyway, I went home for a week. It was delightful. Mom looked after Kiara and myself, and we were able to spend some quality time together. I came to the Trappenberg four weeks ago on Thursday. I arrived here by ambulance, and I was happy to see that I had room to myself facing the beautiful gardens of the Trappenberg. Summer had kicked in and it was fabulous weather to leave your doors and windows open. Though I had a nurse that day was rather stubborn, the day started off okay, because my talk with the Doctor in charge of the Department went well. I had expected problems regarding my rehabilitation due to the last operation on my arm. I needed to rest my arm so it could heal, but I also needed my arm to mobilise. The fact that my arm had been operaterd was a surprise to the Trappenberg. Normally speaking, they would if not have admitted me within the first six weeks after my arm operation. You see, the hospital didn't mention it because they knew that the Trappenberg wouldn't take me otherwis. They felt that there was too little that I could do here. That was exactly what I was fearing before coming here. In addition to that the hospital had not informed about the fact that I had already walked after my operation. Doctors in rehabilitation centres in charge of neurological departments have learnt to motivate their patients. I was confronted with a screaming female doctor (the head of the department and not the first one I talked to), who kept telling me, “You WILL lean on your arm to mobilize”. By this time, I was furious. "I will not lean on my arm", was my response. These quotes went to and fro three times when she asked me if I would agree to lean on my arm if my orthopaedic surgeon said it was okay. I told her that it would not be okay, as he had told me not to lean on my arm. She then asked me "If he signs a paper saying that it's okay for you to lean on your arm, will you then lean on it?". I replied once more that I would not before I had spoken to him myself. I also explained that I was not planning on losing the function of my arm once again. She then came to the conclusion that rehabilitation wasn't possible for me. I told her that it was possible , as I had walked after my operation. She told me I must be wrong and must have forgotten the chronology. (You see, all neurological patients are crazy. Yes, all of them). How shallow can one be despite her maybe eight years of university?

I suggested I started with muscle strengthening exercises in bed and perhaps maybe do some swimming. I then learnt that the team of physical therapists, that they had assigned to me was the neurological team and not the team that I had trained within the past. I then suggested that they changed that, as it would take much too long to explain my complex situation and it would be a waste of time. The Dr. refused and told me to work with the neurological team. She also told me that she was giving me two weeks time to be able to sit in a wheelchair for an hour.

Taking my medical condition into consideration, this was a ridiculous and unrealistic goal. She also linked that to her decision regarding keeping me here or not. They gave me 2 weeks to prove my ability to rehabilitate. Her colleague substituted her for three weeks, while she went on holiday. This became a huge problem for me. I was angry about them wasting my time and making the wrong decisions. The anger caused me huge stress, and the general atmosphere was set.

Fifteen-l’oeuf to the Trappenberg.

I had prophesied that it would take a whole week to undo all the mistakes made. That is seven days of precious rehabilitation time for me. And that would leave me one week to prove that I had a right to be here.

On the Tuesday after my intake, I had my first physical therapy session. 23-year-old Jesse came to my room and I talked to him for about five minutes explaining that it would be a waste of time to start all over again with a new therapist, whilst they were three therapists in the building, who have known me for three years. Jesse agreed with me and told me that at least one of my therapists of the past, also worked for the neurological team. He promised me he would make arrangements for them to treat me. I also told him about the last couple of weeks in the hospital and about how the physical therapists in the hospital had neglected me the last weeks. By the time I was through Jesse was sitting on the edge of my bed, teary eyed. He couldn't believe how it was possible that they had done that to me. It just goes to illustrate that the hospital should have kept training my muscles, to avoid further deterioration.

On Thursday they had finally reached Doctor Schönhuth, my orthopaedic surgeon. He verified my story and finally, the Doctor realised that I was certainly not to lean on my arm for the next four weeks.

Fifteen-all for me.

Okay, so I gradually started to notice that the struggle with the doctors was a power game. I especially noticed it when I wanted to go home for the weekend and I needed her signature in order to organise my transportation. Even though my insurance had agreed to pay the bill. They were apprehensive to sign the request. They kept telling me it was because they were worried about receiving the bill at the Trappenberg. After explaining the procedure several times and telling her that I always receive the bill at home and send the declaration to the insurance, she still refuse to help me out.

Thirty – Fifteen for the Trappenberg.

I finally made a contract with her, which stated that if my insurance did not pay for the trip, I would pay for it myself. I had cornered the Doctor and was allowed home.

Thirty-all for me.

By the second week, my therapists started to tell me about the reactions they had received from the Doctor in a rather heated discussion. The therapists were on my side. They more or less confirmed my thoughts fears;

A) the Doctor didn't understand why someone like me with cancer, would even want to go through the rehabilitation.

B) some nurses were complaining about the work involved in looking after me.

C) the Doctor had a wrong idea about my character.

I must mention here, that nobody told me outright what was said, but when I suggested how things were according to me, they weren't able to tell me that that was not the case.

In the third week I started swimming. It was a major operation to get me to the pool, but we managed in the end. I did well, really well! Check out these vids:

(keep scrolling down after watching the vids)










As you can see, in order to get me in and out of the swimming pool, several transfers have to be made. One particular day, we were making the transfer from the showering bed to my own bed. There was any metal edge that I would have to slide over. We had solved the problem by putting a duvet on top of it the day before, which worked. When I was about to slide over, I noticed that they had put the duvet on single-ply. I mentioned that they needed to roll up the duvet instead. The nurse involved was stubborn and said that the single ply should be enough. One gets tired of having to instruct people all day, but you do it anyway. But when they are not prepared to listen, you can either cause havoc or comply. This time I was so tired of the struggle that I decided, “Hey, you know what? Why don't you just go ahead and do it your way?” I shouldn't have said that because I ended up really hurting my tailbone as I slid across. I made an huge bang and was reduced to tears. I never cry when I hurt myself. But when I do, things are really pretty bad. Anyway, the thump caused quite a bit of pain and set me back slightly. In the meantime, I have also heard that the Doctor wanted to reduce the frequency of my swimming from five times a week to once a week. How crazy is that? That the one thing that I can do is taken away from me? Last Tuesday, the Doctor had returned from a holiday. It was time for me to have a chat. I decided to grovel. I figured that grovelling might be the best way to change things around. I mention my anger, which I had when I came to the Trappenberg and that I felt that she might have gotten a wrong impression of me. I explained my anger, and had a lot to do with the weeks preceding my start at the Trappenberg. Great! This worked! Because she immediately admitted that the intake had not been as it should have been. She had rushed things and had allowed external matters to come between us. So, that is how we buried the hatchet.

Fourty-thirty for me.

And then asked her if she could give me greenlight rather than making me have two prove my ability to rehabilitate every week. I explained that that put a lot of pressure on me. She she told me I didn't have to worry about that any more and that I had shown the team that there are plenty of chances for me. I then asked if the frequency of my swimming activities could be brought back to at least three times a week. That was no problem at all. I had expected it to be a real battle. So, all things were set.


GAME- SET- MATCH. Aisha wins!


I started off the week with quite a bit of pain and Wednesday I went to the VU hospital to have a scan made of my pelvis. The scam was made to see if the embolisation had helped and also to check whether their radiation therapy was working. Yesterday morning, Doctor Lips call me in the morning and left a message saying that I should return the call. He told me that there was a fracture in my tailbone, the location was precisely the same location as where the nurse had injured me who had made my transfer. The fracture cannot be mended, because there is no material there to fasten the bone to. I will just have to hope that it will mend itself. I'm afraid that this will put me back at least another six weeks. That is, if the bone does mend itself. Let's just hope that this does not stop me walking. I cannot believe it! I was just about to start standing.

When Kiara left for her holidays, she asked me one thing: " Mom, will you promise to call me as soon as you standd next to your bed?". She called me today from the south of France. I told her about the fracture and that I told her about being able to swim six times the length of the pool on my back. Thankfully, she was impressed.



Martina Topley-Bird - 02 Too Tough To Die Live Montreux 2004
Geüpload door helaheudanlatehitehia. - Muziek video's, interviews met artiesten, concerten en meer.