Mich's Story

Then... It’s the mid sixties, I am just a little boy. My father is laying in the hospital in an annex building. I'm in a small glass cubicle all by himself. My mother is being treated in the same hospital, in the surgical ward on the third floor. Both have cancer - called the "big C" in those days.

I have one younger brother and four brothers and sisters who are older. Six children all in all. My father hardly wants to see us during visiting hours. He sends some of us away to visit our mother, some to other patients who don’t have visitors. My brother and I, the younger kids, don’t understand why and my mother is too ill to explain or maybe she doesn’t even realize what is happening. She is heavily sedated and will remain like that for the next two weeks. More surgery is already scheduled for her. I understand that it’s her stomach and some organs only mothers have.

The illness of my father is even more mysterious to me. I know it’s got to do with his belly and his bowels. And I notice he gets very uncomfortable when once in awhile I get to stay ten minutes or so in his small room. He has some bottles with eau de cologne on his bedside table. That’s very unlike him. And all the time he asks us to bring scented hankies which he constantly rubs on his wrists and forehead when I am there. To mask the odor of stool, as I later find out. Somebody, I don’t remember who, explains that my father has a colostomy. Or a stoma, as it is usually called in Dutch. He can no longer poop like us all, he has to do this in a bag, which the nurses stick and tape to his abdomen. And he feels horrible because of this. Mind you, my father wasn’t a dandy. But he was always spotlessly clean. A shower, a proper shave and maybe some after-shave, that was his ‘beauty’ routine. Possibly an anti-perspirant, that was all. As I realize now, back in the 60's, ostomates didn’t have many appliances to choose from, let alone any room deodorizers or drops to combat odor. My father died within a couple of months.

We, the family - well actually the children with some help from I don’t know whom – had moved into a bigger house during my parents' hospitalization. My father was allowed to spend one weekend in our new house. He didn’t even make it to Sunday. He had to be rushed back to his little cubicle in the hospital on Saturday evening. Only to die there some weeks later. My mother lived for another year. She somehow got her strength back, although not a whole lot. There were six children to raise, who was going to take care of them? That’s what she must have thought. But the cancer got her as well. Back in the 60's cancer was almost always lethal.

Now...

It’s a good thirty years later. We are well into the third millennium. It’s been two years since I had my own ostomy surgery. Yep, the docs found cancer in my body too. Recto-anal cancer to be precise. Squamous cell carcinoma. As if I knew what that was. Boy, talk about being in shock! Everything you live for, everything you take for granted falls to shambles. For a while you don’t live your life, doctors decide for you. They scope, scan and echo you, they procto and recto you. I get to learn all these new medical terms like proctoscopy, rectoscopy, sigmoidoscopy, endo-echo and all these other new medical terms. Do I finally get to make some good use of all the Latin and Greek I learned in Grammar school?

They then said: ‘Radiation will cure you’. Fine, do it! And please start quickly. Well, things don’t work like that. They had to do lot’s of new scopes and echo’s and scans and what not first. And there were waiting lists. Finally after two months the radiation therapy started. The regular one, which takes five weeks and some internal radiation therapy. Continuous radiation while you are hooked on to this strange gurgling machine for three days. Now I was laying in isolation, now it was me inside a glass cubicle. History repeats itself, it sure does. But ‘that’s it’ I thought when all was done, now I am cured. Time to get on with my life. No way, the cancer had grown twice as large. The radiologist wanted to wait another five weeks or so. And then decide what next steps to take. I didn’t, I was too scared. Something was definitely wrong here.

I consulted a new surgeon. He had more tests done. While waiting for the results, he put me on the emergency operating list. When I was admitted to the hospital, he came to see me. The results were in. He said he needed to remove my anus and rectum. Which meant a permanent colostomy. I said that I didn’t want that to happen. The memory of my father lying in this small room was too vivid. Like it was all happening again. And I didn’t want to die, I wanted to live. ‘That’s why you need this operation’ came his answer.

The first weeks after the operation were no fun. I left the hospital in a wheelchair since I could hardly walk. My rectal wound was far from healed. I could only sit in a chair for 30 minutes or so. And this depression was starting to hit on me too. My GP said it would take one year to fully recover. Both mentally and physically. He has been right on target there. It did take one year. Something like five steps forward and right away falling back four of the same five steps. But at least I felt a little better with each new day. I gained back all the weight I had lost. I started to walk on my own again. I once again could enjoy the small things in life. I was on my bicycle some six weeks out of the hospital. Several physio guys and girls helped me a lot. Although it meant being in front of this large mirror with just my underpants on and my pouch for them and me clearly there to see. Talk about self-acceptance.

Five months out of the hospital: I wanted to start to irrigate my colon. Something I already mentioned to my surgeon the day prior to the op. He tells me ‘Fine, go ahead’. People, I tell you, it’s the best decision I took in possibly my whole life. My stoma no longer dictates my life, I dictate to my stoma if and when to be active. I dictate to my colon when to empty. I am once again in full control. I easily get two days in between sessions. And when on holiday -always in the tropics- I get an extra bonus day. Must be the heat and hence my body absorbing water differently. For me this is such a relief. I swim again, I play squash again, sometimes I even forget to put a patch or a cap over my stoma. Heck, I have a sex life again: all is as before the op. Maybe even better!

How I wish that my father could have benefitted from the advances the medical profession and the ostomy manufacturers have made for all us, the people who for one reason or another need this surgery. Sometimes I get to talk with people who had their surgery over thirty years ago. On the one hand, this pains me. There is always this little voice saying: why didn’t my father live that long? Why did he have to die? Then rationality takes over and I feel so glad for them. They are the true pioneers, they had to cope with less professional methods and appliances than us. They are the best proof that an ostomy means living. Living life to the fullest.

In memory of my father who died on October 14th. 1966.

Michiel,
Amsterdam.

Mich, unfortunately, lost his own battle with colon cancer on New Year's Eve 2002
RIP Mich, my friend!

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