15. The period of the first treatments: November 2000 t / m in March 2001

Phase 2 period in November 2000 t / m in March 2001

During this time, everything in the light of undergoing the treatments, to notify everyone you know.   Then there are weeks when everyone is busy and would like to come say goodbye. That puts enormous pressure on you and is very difficult because you have so full of emotions it. It's all very challenging and sometimes it's all just too much and you would you prefer to get away alone and just cry.  

My husband was now the monthly chemotherapy. That meant a rate of once every four weeks on Mondays, Wednesdays and Fridays at the UMC and wait there until the chemotherapy were given. Especially on the first day of the course, my husband at night very sick and nauseated, he got medicine for it again.

Then every Tuesday in the week it reported to the pulmonary clinic, first shots and blood work then wait for 10 minutes talking to the doctor. Often a replacement because apparently it was "our" doctor often away on vacation or at conferences or anything else. So every time a small note and then was to   The results of the blood samples examined, sometimes with an X-ray and was told that there was not much to see but it looked good.

What I remember of this period is the whole business approach from the hospital and there is little time to really go into business. Furthermore, you as a patient and partner receives little information even if you are very specific questions.   We crept over the feeling that the diagnosis given "was made ​​and that they therefore were reluctant to invest in time, treatments, experiments and education. Statistics confirm that diagnosis whatsoever, but that is because the cancer has spread too far or because the treatments do not go far enough? We wanted to give at least not yet. Indeed, "any person sentenced to death would still appeal to prove that he / she is innocent," and every cancer patient wants another chance to prove he can continue to live as long as possible!

We slowly started to look around us to obtain more information about treatments and alternatives. We made ​​an appointment at the KWF Fund in Amsterdam but returned empty-handed back to our sensibilities. More information than we already had gathered and we had no information about alternative treatments or treatment opportunities abroad was certainly not to us. Even when we specifically asked for was reacted negatively.   We made ​​an appointment for a second opinion from the Antoni van Leeuwenhoek Hospital in Amsterdam. Not so much to the diagnosis in doubt, but more to see if there were alternative treatments. Again we got a bit of rude awakening. The diagnosis was confirmed, we were clear that the situation is very serious and still was a risk for paraplegics had seen the damage to his spine by the metastases there (had we never clearly told and shocked us very much) and that indeed was chosen for the standard approach to the UMC and the method of treatment in the Netherlands. Regarding the damage to the vertebrae, my husband was advised to drink lots of milk! Never have we ourselves received a report of that conversation, we had to back themselves.

In this period we also decided to step things to address. In other words, the results from the 2nd chemo and wait to know if there is an extension of time was given. That we could use to continue looking. First in the Netherlands and later outside the Netherlands. See which treatments are still "the market" and there was a choice to make. We also have the practical matters at this stage more or less regularly. Discussed the final phase, what we wanted and what my husband definitely did not want. About euthenasie had. But the funeral to be addressed, it will regularly, and so on. All those things you would rather not have but still want to be discussed. Not everything in detail because it was sometimes prohibitive, then emotionally.

In this period we decided to some feelings and emotions sliding away in the fridge to set. Under the motto "goodbye we pass the last two weeks!". That did not always, sometimes, the emotion too intense, the grief is too intense, the feeling of powerlessness to overwhelming and the idea of coming alone are too close to further business to respond. I think this is also a difference in the patient. You can change your partner, if only imagine what it's like you just going forward, only enter the house after the funeral, just get in bed, etc.. And that's so frightening.

Tips

·         Ask for records of all conversations and keep calling until you find the information you want, have received. Do not settle for the answer that it is sent to your doctor.

·         Claim the time you want to have you ask questions and demand an answer. Do not settle for just   Oct. 1-mint call (plan a 'double' appointment).

·         Make sure you have access to your medical records, make copies of everything and build your own dossier.

·         Have a second opinion execute.

·         Line all the practical matters that you and your family are important, how difficult whatsoever. Later you have your mind free for other things. And that space you need to fight.

·         Talk to each other about everything but take the time to you occasionally with your grief retreat. Make sure you do not lose contact with your partner or go into the emotions. Seek professional help if you can not be done alone or together, be honest with yourself and what you can not handle.  

·         Keep your kids honestly about what is happening and what the results are. Involve them, let them read about it and take it along to such treatments. We have taken to the hospital where my husband received chemotherapy and were there when the drip was inserted etc. Later we have also taken to the hospital where my husband was irradiated.