14.Vooraf the diagnosis in May 2000 to November 2000

Phase 1 period May 2000 t / m in November 2000

From April 2000 my husband started complaining about pain in his back. We know that an accident with karting. But instead it was less, it became something worse. Because it was so gradual, we were not aware that it was something serious.

During the months he had bouts of pain so bad that he could not sleep. Miscellaneous (lubrication) agents did not work (anymore). Often the pain came on after he had made ​​a certain movement that is why we still thought it had to do   the effects of the kart accident or maybe a hernia.   There were general X-rays, but in a statement that after a "haze" around his lungs was, was left idle. My husband went to a physical therapist a few times but after a couple of times it was worse so we stopped by that route.  

In August he was on vacation while we were sweating a lot, especially at night, but since we were in a hot country, we thought it had to do with the heat there. We also saw that his left was "suspended" and he suffered from a clogged feeling in his nose and eye. But because he often suffered from frontal sinusitis was, we know it to.

In September, the back pain so bad that he really could hardly sleep and sit, especially in the car was a disaster. Again, an x-ray of the spine and, after a few weeks, the results stated: "There was nothing to see, and was even said that we did not have to be afraid of cancer, there was no reason for '. After the relief hit the desperation really matter because the pains were only worse. He also started at a rapid pace to fall as he did in the end nothing inside, was still vomiting. Nothing helped. The doctor called again and said that something had to be done because it did not. Who wanted a referral to the orthopedist, but that lasted for a first date back three weeks.

Early November 2000 through the grapevine, we made ​​an appointment for a scan at a commercial institute in Amsterdam. An internist friend provided the necessary referral. The scan took place on Friday, November 10.

The result was the same morning by the internist called by   and it was overwhelming. Metastases of his entire spine. The diagnosis of cancer was made ​​and was advised to jump to the nearest hospital to get him to record. Through the GP, which greatly shocked, was a meeting at the Emergency Room of the UMC made ​​for that afternoon.

Then I have both my husband, who was sleeping when all children are informed. Your world is under your feet and you feel helpless. You want to scream and shout but it continues to regulate and inform everyone involved. In a sense you're numb and you react automatically.

I immediately stopped working (was manager at an IT company) because all the hustle and bustle you could not concentrate on the 'normal' things. Later I resigned. That way, do I have great difficulty because I was ambitious and found the work I was doing great. Processing the fact that I had no job has lasted over one year, mainly due to the fact that the first time you do not deserved and was later mixed with other emotions.   Honesty is that you sometimes needed as a distraction but I never could have done the same job and at the same level to operate. Before that you "filled" with other things.

From that moment you are drawn into the whirlwind and medical doctors, etc. are ruled by what should happen and at their pace, while you just feel that it is too slow.  

That Monday was a result of the investigation afternoon in an emergency lung scan to confirm the diagnosis of lung cancer. The diagnosis, how ironic was mainly triggered by the "left hanging", where previously no one had made ​​pressure. My husband was, after we had specifically requested it, a prescription for morphine for the pain manageable. That stunned and made ​​sure my husband could sleep a bit this weekend. It numbed everything that he lived in a blur, but now he was happy not dazed by the pain. For through that pain was literally the last months of life before him and he was difficult to approach.  

The results of the lung scan was given on Wednesday. Lung cancer. It was suggested that next day to do a bronchoscopy to determine whether the small or large cell lung cancer. It was so small cell and it was suggested as a starting chemotherapy because it is usually small cell lung cancer responded well.

You leave at a moment everything to the experts and say so on anything with a glimmer of hope and opportunity in it, YES! So began my man friday (1 week after the scan) with his first chemo treatment in the UMC. He was admitted and I stayed with him almost all day and night. The prognosis was very poor. He was a few weeks before his death if we were to do nothing and after the 2nd chemo, we know that the cure would be to strike. So you live in perpetual insecurity and you feel that way about it can be.

My husband responded well to chemotherapy, nausea after the huge resources but that was contested. The pain slowly disappeared (the morphine he has swallowed more than 6 weeks and gradually phased out). He became slowly aware of his surroundings and life and what snapped.

After five days he was discharged from the hospital and we would the rest of the 5 day treatment regimens and move forward through his weekly blood tests at the clinic of the UMC and a 10 minutes conversation with the attending pulmonologist.   A, no, the standard treatment for small cell lung cancer is.

He was back home and we lived a bit in a daze, all very unreal. You live in a sort of no man's land, you are while you're also working on the possible departure. Lots of emotion, a lot of grief and sometimes anger about what happens to you. It was a big transition from the hospital with all medical expertise around you home where you only need to dust with a jar of morphine and an appointment for the following week.  

Tips

I find it hard to give advice because it happens to you all, it's actually so gradually. The tips I give are related to both, "you" can refer to the patient, partner, or both. So:

·         Take complaints seriously, especially pain.

·         'm Not self-medicate and avoid to be attributed to the complaints you've had more. We thought the pains were dealing with chronic back pain he had. You're going there to focus and direct the attention of doctors even that.

·         Look   the possibilities for a scan to make. X-rays show little show there and it is difficult to determine an accurate diagnosis.

·         Follow your intuition and do not be lulled to sleep, if it is something wrong then you never forgive you.

·         Accept painkillers, also very heavy, they are there for a reason.

·         Honestly tell what's going on. Not to conceal anything (small) children. They too must cope with it, are confronted with daily.   There is a foundation that it can be helpful in all kinds of advice and tips (Behind the Rainbow Foundation in Utrecht (see page useful addresses for address).  

·         Go to the doctor at the table and discuss with him / her what's going on and where the care is and what his / her role is and can be.

·         Share your grief together, find comfort with each other and give each other, how difficult it sometimes is to draw attention and talk to each other about everything.

·         Stop working temporarily if you have a job, line it with your boss and make no final agreement on a time that you go back to work. Time being living from day to day and get no discussions about these issues or arouse certain expectations.