“For former childhood cancer patients, job applications are a bit like walking a tightrope”
An Interview with Rahel Morciano, affected mother
Rahel Morciano’s son was diagnosed with a brain tumour at the age of 14. Today, Jamiro is officially cured but is still struggling with the late effects of the illness and therapy. His parents are doing everything in their power to make sure Jamiro, now 22, can fulfil his career aspirations, but there are massive obstacles to be overcome.
Ms Morciano, your son was diagnosed with a brain tumour in 2015. What was it like for you and your family back then?
The diagnosis pulled the rug out from under our feet. We were so very, very worried about and of course afraid for our son and had to completely reorganise our lives from one day to the next. At the time, I worked but had to give up my job. It wouldn’t have been possible any other way. At first, we were totally overwhelmed and basically lived our lives on autopilot. After the operation and the chemotherapy, Jamiro was initially paralysed on his left-hand side. In the beginning, it was mainly about him rebuilding his muscles and getting his strength back. But that took a lot of time and he spent almost two and a half years in a wheelchair. Today, he is doing well under the circumstances, but nothing is the same as it was before. The illness has changed a lot but we have learned to live with it and to make the best of it.
What consequences did the illness have on his schooling and training?
When we got the diagnosis Jamiro was in secondary education. Even though he missed nearly a whole year at school, he managed to finished the obligatory part of secondary education. He had always wanted to be a chemical engineer and he had a very specific plan: first, he would do an apprenticeship as a lab technician and then study chemistry with his technical Matura exam (the equivalent of ‘A’ levels). But due to the late effects, it was absolutely impossible for him to find any kind of apprenticeship. That was a very stressful time for all of us. He got one rejection after another and was not invited to attend a single interview. For former childhood cancer patients, job applications are a bit like walking a tightrope – constantly: “Should I say I’ve had cancer or not? Do I have to tell a potential employer about my illness, even though it was a long time ago, and I could jeopardise my chances by telling them, or can I just keep quiet?” These are all questions that those affected have to think about. In Jamiro’s case, however, it was clear we would have to be very open in any communication because he is physically impaired, has balance problems and suffers from fatigue*. This means that, like many other survivors, he also struggles with chronic states of exhaustion and therefore has to pay very close attention to his energy balance.
So what happened when it became obvious he wasn’t going to find an apprenticeship?
Because he couldn’t do anything else, he took a different path and started at what we call a Diplommittelschule in Switzerland, a kind of a technical college you do straight after school. That gave him more time to recover and at the same time meant he could do a useful qualification. Then we started the rounds of application again and this time he was lucky. He found an apprenticeship as a chemical lab technician with an employer who was willing to hire him despite his medical history. That was a massive step for him and we were all very pleased for him, naturally. But after about a year, the problems started because he had difficulty completing certain tasks in the lab due to his physical impairments. As a result, he had to undergo various external examinations at the employer’s request. Due to the test results, his training contract was terminated a few months later. We were particularly disappointed that nobody showed any willingness to look for ways of making it possible for him to at least complete his apprenticeship. That was another low point for Jamiro and he really suffered because of it. The people at the invalidity insurance (IV) advised him to do a number of different trial internships and that resulted in them suggesting he might like to try a commercial apprenticeship – even though he had always made it quite clear that he wasn’t interested in commercial training. The invalidity insurance seems to suggest this regularly as an option for former brain tumour survivors. We really don’t see why the system should be so inflexible. No young person who has beaten a serious disease such as cancer and has the scars to prove it should be forced to simply give up on their aspirations for the future. So we started looking ourselves for ways he could perhaps still realise his professional goal. Now he is going to a grammar school to get the Swiss equivalent of ‘A’ levels and will then go on to study chemistry.
And how do you and your son feel now?
We are confronted with the illness and the late effects every single day. So you really have to forget the idea of simply being able to go back to normality. Cancer has really marked Jamiro’s life forever and it is not always easy for him to accept being so dependent on us for such a long time because he needs more time than others of his age. He is 22 now and will need another two years to complete his ‘A’ levels. That means that everything is inevitably pushed back, so by the time he is finished studying, he will be in his late 20s. And then there are obstacles we hadn’t reckoned with. Because he chose a higher education path with the grammar school, the invalidity insurance no longer covers certain costs. So things that could make his everyday life simpler are just no longer available for him. And we really cannot comprehend that because for him it is his first course of training. After all, he did not voluntarily give up his apprenticeship, but was forced to do so and go the long way round to approach his goal of becoming a chemical engineer. If he had done the commercial training suggested to him by the invalidity insurance, they would have continued to pay for those extras, for those aids. But now, they see his current path as being a second form of training. I find that totally unfair.
What does that mean for you financially?
Well, first of all we are very proud of him for never losing sight of his goal even though the late effects mean he has had to take some extra in-between steps and the whole qualification thus needs more time. As far as it is physically possible, we don’t want him to be limited in his choice of profession. But not every family can afford to do that. This is because the impairments result in many additional costs that parents usually have to cover. First of all, because it might take the person concerned longer to finish a training scheme – as was the case with Jamiro. And secondly because, unlike their peers, some survivors cannot earn a little bit of extra money because they only have enough strength to cope with studying, and simply can’t do a job on the side as well. Added to that is the fact that we also have to pay for health insurance, the GA Travelcard, the compulsory military service levy and other things for longer than would normally be the case.
What would you hope for – also for other parents?
A lot of parents and also survivors have the feeling that they have been left to their own devices in this difficult situation. It was no different for us, but we had the strength to take things into our own hands. I would like to see better access to information about support services in the future. We had to painstakingly find out everything for ourselves and would have been grateful if there had been one central place we could have turned to for help and advice. What also concerns us a lot are the legal questions about the invalidity insurance, which result from the illness and the late effects: “What services are we entitled to and what do we have to watch out for?” In addition, there is an urgent need for better vocational counselling for survivors so that they have easier access to a good education and do not have to risk being “pushed” into a commercial apprenticeship, for example, like my son. Because like him, many have no cognitive impairments, but could well have physical limitations, resulting in them not being able to perform as their peers could. I would like all of them to have the same chances and opportunities as their peers to be able to take up a profession that suits their desires and makes them independent. But unfortunately, reality paints a different picture.
* Fatigue is a distressing, persistent, subjective feeling of physical, emotional and/or cognitive tiredness or exhaustion related to the cancer itself or the treatment that is out of proportion to current activity and interferes with the usual functioning of a person. More about it here (in German only).