ディニー

オランダ、女性、50才

ヘンドリック

オランダ、男性、56才


新しい愛

We had known each other for only four months. Diny had been alone for sixteen and a half years, raising her two children. I, Hendrik, had been alone for six years bringing up three children for most of this time.

It was great for us to have a nice relationship again after all this time. Since we were both working and living 150km apart, we only saw each other at the weekends. We always looked forward to the weekends, when one of us would travel to the other in order to enjoy one another's company and do all sorts of fun stuff. The alarm clock would go off at a quarter past five on Monday morning and one of us would go back to our home and then on to work. A wonderful time!

We discovered and touched each other's bodies, as lovers do. I noticed a rather large lump in her right breast, but the joy of our newly born love kept me from asking any questions about this.


something was wrong

After having spent almost four months together and sensing that something was wrong, I finally put the question to Diny. She answered that it was probably a cyst, something benign that she had already had before- I wasn't totally satisfied with her explanation and suggested that she should visit her physician. The next Wednesday she went to her doctor, on Thursday she was at the specialist, and on Friday we mew for sure: it was breast cancer! Our world collapsed, normality simply ceased to exist.

Diny was working as an assistant to a psychologist in a detention centre for juvenile delinquents and also had a part-time job in the plaster room of a specialist hospital. She did all this with pleasure and dedication. From one moment to the next, all of this was lost. Still dumfounded by the diagnosis, we had another difficult task waiting for us: telling the children. The emotions that this stirred up in us and in the children are indescribable. It was as if a bomb had exploded in each of our emotional worlds, causing grief, anger, desperation and fear.


chemotherapy

Diny decided to get treatment at a hospital in Amsterdam. After many tests and a lot of research, their suggestion was to start off with five to seven hearvy chemotherapy sessions, and amputate the breast afterwards. The first chemotherapy session brought with it the side effects of nausea, vomiting and constipation. In short, she was really, really ill.

After ten days, her hair started falling out in handfuls. That was probably the worst thing for Diny and she desperately begged me to shave off the rest of her hair. This was on a Sunday. I didn't have a trimmer, so I was obliged to use a regular razor. It was a dramatic moment. A razor isn't designed for this sort of work and it kept getting clogged up. I finished the job I had started with bitter tears.

The wig we bought was very pretty and it mirrored the shape and colour of her own hair. The hairdresser did a great job, but Diny didn't feel very comfortable with that thing on her head and she wanted to take it off straight away. It was already past six in the evening when we left the hairdresser, so we decided to get something to eat in a restaurant. Feeling hesitant and insecure, fortunately we managed to find a table at the back of a restaurant, where we ate a simple meal.


a small amount of weed

A few months before all this took place, we had bought a great tent and wanted to make a camping expedition to visit those beautiful cities in the south of Spain, 'in the footsteps of the Moors' as we called it. This was out of the question now. Despite everything, we still wanted to go on holiday together for once, but we decided to stay closer to home.

We would go to Normandy. The specialist at the hospital insisted that Diny should return immediately if she ran a fever. When I thought of this on the night before our departure, I didn't feel at ease. Driving from Normandy to Amsterdam takes about six hours and I didn't want to take the risk. We decided to go to a campsite in the Veluwe, just half an hour's drive from her home and an hour from Amsterdam. The weather was excellent, even though it was already the end of September.

As Diny had already undergone her second chemotherapy session and was feeling pretty rough during the first days of our holiday, she slept until the early afternoon. Like so many people of my generation, I had experimented with cannabis before. I had read in a newspaper article that marihuana could offer relief to people who suffer from serious illnesses. We had talked about this and I had bought a few grams of weed. When she awoke at noon, I had tea ready and a few roll-ups with a small amount of weed in them. She took a few drags while still lying in bed and, amazingly, felt a lot better!


finishing a whole meal

We would drink tea together, enjoying the sun, and pick out a place worth visiting in the area. Then we would drive there and enjoy the day intensely, no matter what. In the evenings we always went to a cosy restaurant in a town nearby

Diny couldn't eat a lot because of the chemotherapy, so she always asked for the children's menu or half a portion. She would eat without being able to enjoy her meal and always drank a glass of white wine diluted with mineral water. We slipped into a routine of sleeping late before starting our day with a few drags of weed, tea, sightseeing and then our trip to the restaurant.

After a few days, I noticed to my amazement that Diny had started finishing a whole meal, even before I was through mine. I couldn't believe my eyes! She looked at me with a big grin and said:"It tasted so good, that must be because of the weed." It was a very special holiday for both of us, going camping half an hour away from home straight after a chemotherapy session and still having a really great time


not been effective

Then we went to the hospital after our holiday, it turned out that the chemotherapy sessions had not been effective. The swelling had hardly decreased. After consulting the surgeon, the decision was made to move on to breast amputation. We had thought that this operation - which would be followed by more chemotherapy sessions - was still far ahead of us, but the moment had arrived much sooner than expected. There was no other option and nothing for us to do but adjust to the situation and accept it.

After the operation the surgeon told us that surgery had been successful but that he had also removed many secondary tumours from the lymph glands. This was not a good sign.

It is not surprising that a woman with only one breast feels herself to be less of a woman. I told her my view of the situation. I am the father off our children and was present at all four deliveries. After their birth, I watched babies being breastfed over a period of about ten years. I managed to convince Diny that I had gained a different outlook on breasts through these experiences. A breast to me as a man wasn't much of an erotic object anymore,but an amazingly practical one.


the scar

Two days after surgery, Diny asked me if I wanted to see the scar. A nurse realized that this was an important moment and I asked her if there was a vacant room nearby so that we would be sure that no one would disturb us.

Diny showed me the scar - thirty eight stitches - and I comforted her and tried to convince her that she was just as much of a woman to me after the operation as she had been before.

For nights on end, we talked about everything that had happened to us. We talked a lot about the things that had forced themselves into our lives, things we hadn't asked for. I remember one particular night when we mentioned breast reconstruction and euthanasia in the same sentence.


radiotherapy sessions

Shortly after the breast amputation, we were told that the surgery had to be followed by twenty-five radiotherapy sessions on four different areas of her body. The sessions were to start very soon and I didn't have any idea of what this would mean. The radiotherapy sessions started shortly after she was discharged from the hospital.

First, they marked each area of her body with ink. Then, the real work started. The first few sessions weren't too bad. The room where the radiotherapy sessions took place is reminiscent of a science fiction movie, with its strange radiotherapy chair that can be moved in every direction. Underneath this radiation cannon, two red laser beams - one horizontal and one vertical - are aimed at the area to be radiated.

Soon, it became more severe and more difficult. Every day, the same drive to the hospital to undergo a disagreeable procedure that you hadn't asked for. It was getting more and more difficult to get Diny into the car and she would just sit on the edge of the bed, determined to stay there.

I knew that trying to convince her of the benefit of this therapy would have no effect and I didn't see the use of it, either. All I did was park the car in front of the door and wait there with the engine running until Diny came out of the house of her own accord. This usually worked.


celebration

To make matters even worse, when she was in the radiotherapy room she started getting disturbing images of people with shaved heads sitting in the gas chamber of a concentration camp. More medication was added to suppress the fears and side effects of radiotherapy. We were so upset that, unfortunately, we didn't even think of smoking weed, which had proved to be so effective previously.

The drive to the hospital got harder every day. One time, Diny completely refused to have the radiation. She wouldn't even listen to my reasoning anymore. In the end, we convinced her to go through with it with the help of a tactful nurse. Fortunately, all this came to an end as well. The twenty-fifth radiotherapy session took place on the sixth of January, 1998. I was there, and her son and daughter had also joined us that day.

We walked to the car after the session and everyone was quite surprised when I took a bottle of champagne and glasses out of the boot. We raised our glasses in the car park, glad that this ordeal was over and done with. Some passers-by smiled at the unusual sight of such a celebration taking place in a hospital car park.


side effects of all the medication

During the months that followed, Diny was terribly ill from the side effects of all the medication and radiotherapy sessions that her body had endured. One evening, months later, we were out for a walk in a park. It was dark and we looked up to the sky for a moment. However strange this might sound, we were both really surprised that there were still stars up in the sky! Where had we been all this time?

While I had the feeling of having lived in a dark tunnel for an interminable period of time, Diny had felt that she was riding in a speeding train without emergency brakes! So it was that our separate reactions to the shared experience had combined to bring us closer together.

The following months were marked by regular visits to the hospital for check-ups. When we tried to make a rough estimate of how often we had been to the hospital, we came up with the figure of 100 to 130 visits.


enjoy the small things

We learned to live one day at a time. We could enjoy the small things in life immensely. We often drove to a fishing harbour nearby, bought a portion of fish and drove to a car park overlooking the sea, taking a bottle of chilled white wine and two glasses with us.

While eating and drinking, we would watch the beautiful skies and, sometimes, spectacular sunsets. That made our day. Our aim was to do something together every day, no matter how small. We would go for a walk, enjoy a cup of coffee and pie in town, or a meal in a small restaurant.

Finally, to our joy, Diny again managed to cycle small distances! All the things we did always gave us a feeling of triumph over adversity. We had come another step forward.

A time came when things were going reasonably well and we could even go for short walks on the beach! We would take lots of rests along the way and end up in an outdoor cafe overlooking the sea, drinking a white beer, and we would look at each other with a shared feeling that we had managed to come so far and that no one could take this away from us!


received yet more bad news

However, we always had a dark cloud hanging over our lives. Not a day went by without us being confronted by the disease. Diny was very weak, physically, and sometimes depressed, afraid of not making it through to the end of the year. This was mainly caused by the numerous scans she underwent once every few months, which didn't give any reason for hope.

Once, when we were driving home after having received yet more bad news, we couldn't put our feelings into words. For a moment, we were emotionally paralysed. Then, Diny did a peculiar thing. She rolled down the window and started cleaning out the dashboard and the glove compartment and everything in the car that was worthless got thrown out of the window. Normally, she wouldn't even throw the cellophane wrapping of a cigarette packet out of the window. I just let her be.

Six months after the last radiotherapy session, she started to feel a bit better. We never gave up and I think she started getting better because of her incredible strength. Not only was she fighting for her own life, but also for the people she loved that surrounded her. This was how we stumbled through the first year, but during the last few months, Diny again started suffering from terrible pain.


emergency scan

She didn't want to go back to hospital and so we kept putting it off. Eventually, the moment came when we really had no other choice. Diny couldn't go on suffering any longer and so we ended up going back to hospital.

On New Years Eve, they did an emergency scan and the results weren't good. She had to be readmitted to the hospital. The date of admission was set for the January 6th, 1999. Ironically, this was exactly one year after the four of us had been drinking champagne in the car park to celebrate the end of her radiotherapy sessions. Now she was going back in.

Her children and I brought Diny to the designated room, where she was attached to a drip and a morphine pump. When visiting hours came to an end, we had no choice but to go home. We said goodbye. At the door, I looked back one more time. Never in my life have I seen so much pain, desperation and fear in the eyes of a human being as I did then. My heart broke.


Gnomes are walking over my bed

The following few days were a living hell for everyone invololved as the doctor s sought the right combination of medecation and painkillers. Without this particular combination of drugs , Diny was feeling so nauseous that she couldn't eat antthing and kept losing weight. The pain continued, despite the intravenous morphine. She even started hallucinating once, saying "Gnomes are walking over my bed" . In the edd they found a 'cocktail' that had the righteffect ans she slowly started eating a little again.

One day, when I walked in to pay my daily visit, I couldn't believe my eyes. I saw Diny standing in the hallway, fully dressed, and talking to a nurse. A wave of joyous surprise washed over me. On January 29th, much to everyone's surprise, she had recovered to such an extent that she was allowed to go home.

A hospital bed, bedpan, Rollator {a walking frame on wheels), and a toilet heightener were installed in her home thanks to the hospital and with the help of a good friend. The furniture in her room was changed around so that Diny could lie beneath the window and look out onto her beloved garden that was visited by lots of different feathered friends.

Early in the afternoon, an ambulance brought Diny home in the company of her daughter. She was carried through the garden and into the kitchen on a stretcher, but it couldn't make the turn from the halfway to the living room. Much to everyone's surprise, Diny simply got off the stretcher, glanced around the room, let out a cry of surprise and went to put the kettle on for coffee and tea! After that she spent weeks lying in bed again.


prognosis

A doctor from the municipal council paid a visit to see how serious the situation was. She was very impressed and the decision was made that, considering the prognosis, Diny was eligible for specially adapted housing, which she could get within six months.

When we still hadn't heard anything after six months, we decided to phone the hospital administrator. It turned out that, because Diny had been spending a lot of time in my home, the 25 guilder administration costs hadn't been paid. They hadn't even started the paperwork!

Slowly, things started getting better. Every day, I rolled a few small joints for her. At first we went to the village with Diny in her wheelchair,just to have a cup of coffee and something to go with it. That was a real treat for us. As Diny recovered some of her strength, we took the Rollator to the village. Later, she was able to walk with the aid of a stick and later still, we went arm in arm, very carefully. That felt like a victory.

Two more scans were made in April and in July. Despite everything, Diny was feeling pretty well and she decided to go back to work for two half-days a week, on a therapeutic basis. This suited her very well and so she decided to work four half-days a week, or at least try to do so.


secondary tumours

Diny was ready to return to her home and to start working again, but first we had to visit the hospital for a check-up and to find out the result of the last scan. The internist consulted her case history, looked at her in surprise and told her that things didn't look good. The secondary tumours that were visible had become larger, and some that had not been apparent before had become visible. How many times can a person collapse?

We walked out of the hospital, defeated. We sat on a bench together and lit up a cigarette. Neither of us knew what to say. Slowly the truth of what was happening started to dawn on us. This would not end well! She began to cry bitterly: gone was her job, her life. I put my arm around her and stroked her head without saying anything.

We sat like that for hours, hand in hand, in silent despair, with tears and intermittent fits of rage. We realised that we had to tell this news to our children as well. The strange thing was that we never cried at the same time, as if we had made a silent pact. When you cry, I will comfort you. When I cry, you comfort me.

We finally got up and walked towards the subway. Diny insisted on going to her home, despite my objections. I suggested that we go to my place, but she wanted to be alone for a few days so that she could think about everything. Reluctantly, I accepted her desire to be alone. We embraced each other with mixed feeling, wished each other courage and took the subway in opposite directions.


This is, alas, a fact.

We had agreed to meet at the hospital four days later to talk with the internist and the children about the prognosis and what further treatments might be possible. In the event, the conversation was pretty pointless. Diny and I had already talked about what we would do.

The internist had another chemotherapy session lined up for us, of the most severe kind, but without any guarantee of success. We thanked him, but declined. For Diny to be ill for six months after chemotherapy, again losing all her hair, nauseous from its side effects: no, never again.

We decided only to carry on with treatment for the pain and to make the best of life, for the little time we had left. Seven of the eight different kinds of pills she had been taking ended up in the rubbish bin. Only the morphine and marihuana remained.

In less than a week's time an unbearable pain started again and Diny had to undergo radiotherapy immediately. When. we went to the radiology department to make an appointment we were told that there was a waiting list of at least five weeks!

The internist couldn't do anything about it. I was outraged. It's unbelievable that patients who are chronically and terminally ill can be left to suffer like this in a country that claims to be so socially responsible and prosperous. This is, alas, a fact.


sensible to start using marihuana again

Back home, we discussed the situation and decided that it would be better if Diny allowed herself to be admitted to hospital because she would have a better chance of getting radiotherapy. Sometimes people cancel their appointments at short notice and that makes room for someone who is already in hospital.

This time, things went a bit better because they already knew which medicines helped and which didn't. After a few days she managed to get her treatment and was allowed to go home afterwards, with the hope that it had been effective.

The following weeks were not exactly easy. The pain continued, as did the nausea and all the other side effects. Diny stopped eating and lost fifteen kilos. It seemed sensible to start using marihuana again and see if it helped.

What else could we do? First, I made weed tea for her but that wasn't a success as it gave her stomach ache. Then I bought a vaporizer and tried that. It made Diny feel better but she ended up lying on the couch in a daze all day, so that wasn't the right solution either.

Then I just rolled a normal joint for her, using a mild kind of weed. A few drags proved to be effective and then the joint would extinguish itself in the ashtray until Diny felt she needed to take a few more drags.


I don't feel any pain!

One day, she looked at me with surprise after having smoked half a joint and said:"It's unbelievable, this is the first time in weeks that I don't feel any pain!" I was happy because I felt as if I had been able to do something for her. I was even happier when she started eating again!

Rolling a few joints for her became a daily ritual. So much had taken place in our lives in such a relatively short time: so many downs; so many reset boundaries; so much pain and fear. Despite everything, we just carried on. We were still alive and wanted to carry on living. We learned the skill of living for the moment.

We had been in my house for months, near the dunes and the sea. One day, Diny told me that she wanted to return to her home. She took all her drawing and painting materials with her, which was strange. I was overcome by the anxious feeling that she wouldn't return. This turned out to be the case. We only came back to my home once, to spend the Christmas holidays with our children. On New Year's Eve we were back in her home together. These were very special and intimate days.

The only question that cast a shadow over these days was whether Diny would still be there the following year. This was the thought in everyone's mind, but we never mentioned it out loud.


highs and lows

In the following months there were a lot of highs and lows, in a physical sense. We made the most of every moment in which Diny was feeling well. Even when she was lying in the living room, we could enjoy watching the birds that flew down to eat from the food nets that she had hung up in front of the window. We tried to understand the hierarchy between the great titmouse and the sparrows and were captivated by them.

I noticed that she was having more difficulties with walking every time she got off the couch. Her right hip, where she also had secondary tumours, started to hurt more and more. She started spending more time in bed. I sneaked up the stairs at least ten times a day to see if she was awake, so that I could bring her tea and biscuits, or lie down beside her for a chat I had to help her with going down the stairs, because she liked lying on the couch and watching her beloved garden and the birds.

A short while later, I couldn't support her any longer, because everything hurt. She would come down the stairs on her bottom, sliding down the steps one at a time. One Friday night, a friend of ours was going to take part in a play in a nearby town. Diny was set on going to the theatre and had spent six hours in bed in order to build up enough strength.

She made it, supported by a friend and a walking stick, and all went well, although she did have to throw up before the performance started. The next day, Saturday, the weather was amazing and I suggested that we go for a little walk. The Rollator was put in the car and I had brought a flask of tea and biscuits. We walked through a nature reserve, but sat down on a bench after the first hundred metres. Diny was exhausted.


You must be there too!

When we got home, she collapsed onto the couch and said,"I can't go for walks anymore." The next day, Sunday, she started feeling a lot worse. She was short of breath and I decided, against her will, to call for the weekend physician.

Diny was very fond of her own doctor and didn't want to see anyone else. We came to an agreement. I would phone her doctor the very next day, but I told her I couldn't let her go into the night like this. She agreed to let the weekend doctor come.

Despite the pain and the tightness in her chest, she insisted on going downstairs. Sitting on her backside on the steps of the stairs, she slowly made her way down, moaning from the pain in her back. Lying on the couch was too painful for her, as was sitting. Then she wanted to sit in the armchair.

When we finally managed to get her there, I kneeled down in front of her and placed my hands on her knees. Suddenly she gave me a penetrating look and said,"You must be there too!" It sounded like a command, which wasn't like her at all. I understood immediately that the 'Big Battle' had begun and, at times like that, you don't ask politely.


Diny was fighting Death

The doctor arrived soon after I had explained the situation to him over the telephone. It turned out that Diny had fluid in her lungs. She had a lung infection! She couldn't take the prescribed antibiotics because the pills were too large.

On Monday, her family doctor came and he was shocked. After examining her, he decided that she had to be admitted to hospital immediately. Fifteen minutes later, the ambulance arrived and we were on our way to hospital. Diny's children and daughter-in-law followed the ambulance by car.

After a thorough examination at the hospital, it was found that she had a serious lung infection. Of course she had to stay and was given a room of her own. It was now clear that the Big Battle, the birth in reverse, was proceeding quickly. Diny was fighting Death.

We gathered around Diny's bed: her son, daughter, daughter-in-law and I. The next day, a very good friend of Diny's arrived and we decided to stay by her side, no matter how long it took. We ate and slept in the hospital. We didn't leave her alone for a second. We watched her as she lay fighting, with pain in our hearts, unable to do anything. She couldn't let us go and we couldn't let her go, either.

How much must you love someone to be able to let them go? Very much!


two things happened at once

In the end, we couldn't bear to see her like this any longer and we started tang to her, knowing that she could hear us. I told her how much I loved her and talked about the crazy days of our first four months together, when we didn't yet know she was ill. I told her how special our intense relationship had grown as a result of that illness.

I made her promises about things I would do so that she could feel peaceful. When I finished talking, she moaned and I knew that she had heard me.

All the others talked to her as well, we spoke the everyday things aloud and whispered the intimate things into her ear.

On Wednesday at twenty five past two, Diny suddenly sat upright and looked at us. Full of excitement, we said all sorts of thing at once. Her good friend said:"Give us a sign when you reach the other side."

Then two things happened at once. It was dark outside and raining. When she looked at us, she sighed heavily three times, as if getting ready to take the leap. Her head fell back onto the pillow and the sun burst through the clouds, its full glory flooding through our window to light up the entire room! Diny lay there, bathed in sunlight.


so beautiful and peaceful

Her face, which had been tense and marked by thirty months of pain and fear, was now completely smooth. The birth in reverse, as I called it, was complete. We all reached a state of euphoria, drunk on a cocktail of joy and sorrow. We danced around the bed and cried out:"Look at how beautiful she is, lying there: she could be a twenty-five year old girl." Her hands, which had been skinny and riddled with veins, turned into Tuscan marble!

We couldn't get over the fact that she was so beautiful and peaceful. We kissed and stroked her. Her son noticed that his mother had her own body scent back again. I smelled her beautifully smooth forehead as well and, amazingly, I could again sense the smell she had when we first met, when she wasn't using medication. The scent combined a blend of sun, sea, and beach.

The ladies in our party helped the nurses with the necessary tasks. When all was done, we covered Diny with a spread and insisted on walking with her to the door of the morgue.


sweetheart, I can't go with you any further, see you again.

The next day, we went to the morgue again. This time the ladies had sought out her nicest clothes, those she would definitely like to wear.

Her daughter-in-law had brought make-up with her and made up Diny's face beautifully. There was a lot to be done, and we hardly had any time to think. We visited the morgue every day to look at her. She looked so peaceful. We closed the coffin ourselves. Brought the con into the church ourselves. It was a beautiful church service in a beautiful little church.

When the service was over, I wanted to carry the coffin again, the last thing I could do for her. I took the handle nearest to her head, walked out of the church and placed the coffin on the wooden crossbeams of her grave.

In my thoughts I said, 'sweetheart, I can't go with you any further, see you again.'