Staying close when having a child with cancer is not easy. Your skills are challenged to the utmost. From the moment of diagnosis ‘normal’ life ceases and may never return to what it was before. How do relationships survive?

In this presentation I want to give you some tools to survive. And if it’s not for yourself, please care for the parents who stand at the beginning, who have to support their child on the long way of cancer treatment, who face the death of their child or who care for a child that survived.

They are all struggling in their own ways with fear, anger, sorrow and pain. Maybe you – as parents, doctors and nurses - can give them some professional, personal or parental advice.

The disadvantage of psychologists is that they start with stories about sorrow and pain. Stories about people in trouble. Because that’s why people go to psychologists.

‘When I look at her, she is so far away. We are in separate worlds. Each on our own island. How can we come closer?’

But the good thing is they can end with stories of ‘coming more together’ and ‘feeling more intimate’ Because closeness and intimacy are look-alikes I want to start with some different forms of intimacy.

Intellectual intimacy. Intellectual intimacy: the exchange of important ideas and topics can create intimacy. Hopefully there is intimacy between us, because you are interested listeners. This can be the same between parents. When there is intellectual intimacy, the distance between parents is small. Both parents communicate on the same level.

"My partner and I both love to read and exchange ideas.  We always have something to talk about"

Physical intimacy. Look around and you will see what I mean. Rocking a baby, the embrace of mother and child, sitting close to a friend, a kiss, a hug, touching each other, holding hands, all are forms of physical intimacy.

"Four-year old Simon diagnosed with a brain tumour is very ill. He only wants to sit on his mother's lap"

When a child has cancer it’s not only the child who needs physical comfort. Also Parents too long for physical intimacy.  They can feel very lonely.

"I was in the hospital with my son, my husband was at home with the other children. Although we phoned regularly, I missed his arms around me. Once at home, I thought it would be better. But I was exhausted. My son with cancer, the other children, my work, it was all too much"

The child survived, but this couple had to start again.

Sometimes it’s the other way around. In the next example the mother is in shock

"I couldn’t do anything. I just sat on the couch. I didn’t want anyone to come near me. I just didn’t want it"

Parents who are able to share their pain - how desolate they may feel - can give mutual comfort.

And what to do with the sexual relationship? Making love as parents of a child with cancer is most of the time very emotional. And sometimes the child with cancer sleeps in the parental bed or bedroom, which makes love-making almost impossible.

Yesterday it was the first time that we made love.  Afterwards I cried a lot. It was so contradictory. Nice that everything was normal, but at the same time an overwhelming feeling of guilt. Is it possible to enjoy love making while your child has cancer? 

Let’s go back to another type of intimacy: emotional intimacy i.e. exchanging important feelings. For most adults talking is one of the most important ways of exchanging feelings and ideas. But talking - and especially talking about your feelings - is not always easy. Fathers in particular found it difficult to talk about their feelings.

A father: "I’ve always found it hard to talk about it. My wife is different, more open. She can talk to everyone. I don’t"

Exchanging important feelings doesn’t always need to happen in face-to-face encounters. Sometimes it’s even nicer when the person you love the most isn’t there at the moment. It can be safer.

"We used to send each other letters when we are younger, now talking is so painful we started writing letters again"

"I love you, come home soon. XXX" (SMS message)

If we define intimacy as being close to another person, then shared activities can provide another way to achieve this state. Not only doing things together with the whole family, but especially partners spending time together.

Quality-time.  The 10-year old twin daughter of Iris and Mark is treated for a relapsed Hodgkin's disease. Medically everything seems fine, but the child is very depressed. She is very tired, can’t go to school by herself and is jealous of her twin sister who seems to have enough friends. She doesn’t want to see a psychologist (she really hates professionals) so her mother asked for help for herself. After a few months of advice for the mother, the father stepped in. He was depressed too. He claimed that there was no time left for him and his wife together. They shared the pain, but not the nice things. Everything revolved around the twins. Half a year later they enjoyed a dinner for two for the first time. 

Be aware: not even the closest relationships always operate at the highest level of intimacy.  At times parents may share all their thoughts and feelings with their partner, at other times they may withdraw. Or they may freely share their feelings about one topic but not about another.

Of course there are cultural differences in intimacy, at least in the expressing of intimacy. In some cultures husband and wife are not allowed to express their feelings in public, they are not allowed to walk hand in hand, to look or talk to each other. We all have our own values and standards. But being grown-up in a society with strictly separated roles will surely affect the closeness you need so much as parents of a child with cancer.

So how to keep your relationship clear and alive if your child has cancer?

In each relationship one has to work, in times of a crisis one has to work even harder.

If parents want to come together or if they want to prevent troubles growing beyond their control they have to talk to each other. Talk about their feelings, express their sorrows, their anxiety.

Some advice for parents in despair:

Choose the right time and place, don’t ask for attention when your spouse is too tired to receive anything, not when he or she has 5 minutes to relax and not when he or she just starts to go out (that’s called the doorknob-method).

Don’t choose to express your feelings in the supermarket, or on the stairways of the hospital but choose a quiet place where you can be yourself and a moment that is the best for both of you

(When parents were asked about the right time and place to talk about their feelings many of them answered: in the evening when the children are in bed and we are enjoying a glass of wine. Others say: while walking together along the beach, while having dinner together, while washing the dishes together or while sitting in the car going to the hospital. The most important thing is that parents make and take time for them together!)

Be clear and honest; don’t think half words are enough because you understand each other fully. You know the sentence: but I thought, that you thought, that I thought? Stimulate each other – and other parents - to be clear and honest. What do parents expect from each other? In what way can they support each other?

Don’t be afraid to show your emotions, sometimes parents try to protect each other by not showing their emotions. That sounds nice but is almost impossible to maintain.  They also miss the chance to share.

Don’t deny the other person's feelings, don’t say ‘You don’t have to be afraid’, or: ‘It’s ridiculous to feel guilty’.

Try to retain hope.  But what if talking is not your style?

We have to accept that some things never change.  If talking was not the style before the child was diagnosed then it will be not now. Fathers who find it difficult to talk to their children are not by definition bad fathers. Playing soccer with your child is also communication. Mothers who have difficulties in saying ‘I love you’, can show their love in other ways. But: it can be a problem if one has to talk. In my practice I talk with many men and women. They all start with ‘I don’t know what to say’ (or my wife sent me) and they all talk till the end. 

For parents it’s important to know that there are lots of other ways to ‘talk’. Writing a letter is one of the best examples. Draw a kiss on a paper, send an SMS, write a mail, draw a picture, buy some flowers, sing a song, or: go out together to share some activity. 

One more thing: Not knowing how to communicate or ‘how to come off your own island’ is normal when your head is full of sorrow. Stimulate parents to think about what they did before their child was diagnosed.  How did they interact before? How did they solve their problems?  What was good and what of no use? It’s in their system!  They only have to pull it out.

Professional support

If troubles are too much, if there is no way out, don’t hesitate to ask for support. Psychologists are not so bad.  (You look very normal! commented a 10-year old client, last week). And of course there are other psychosocial workers. It’s good to put your suitcase full of sorrows on the table of a professional. 

It’s not a sign of weakness to go to a professional, as most people think. On the contrary, it’s a sign of power.  Asking for support is taking good care of yourself. And it is never too late. 

Ten years after the death of his daughter William came to talk about his pain. His wife didn’t want to come, but after a while she started to come also - at William's request. She refused to talk because – she said – ‘talking doesn’t bring my daughter back’. I agreed with that, but the problem was she never talked about her daughter. The two other children didn’t dare to talk about their dead sister either, because if they did their mum burst out into tears. They had a lot of questions. Individually and together they talked a lot with me and each other about how to handle the pain, I even went to their home.  William considered a divorce.  He couldn’t handle the situation any longer, but he decided to wait.  Little by little the mother started to talk in her own way and in her own time.  Together they made plans for the renewed memorial of their daughter and sister.  It was painstaking for all of them.  I will never forget William's tears.

As he said: why must it be so long before we talked about this?  Why not eight years before?  I told him that everybody follows his or her own path.  There is no time, there is no place, there is only one way to survive: to express the unexpressed at your own time and at your own place.