Allow me to introduce myself. My name is Katia Vermeire and I have been a member of IMA Luxembourg since 2006. In 2011, I was part of the team that prepared the EUMA International Training Day in Luxembourg. I have worked as a management assistant since 1995. I came to Luxembourg in 1999 to work, initially for 3 years, but twenty years later I still live and work here. After all I have been through lately, I now have to admit to myself that being a management assistant is no longer possible. However, I do believe that finding new challenges is still possible.
This is how the cancer got discovered
It all started on 6th May 2019 during our holiday in Madrid. That morning, I accidentally hit my foot against a table leg and then, in less than a second, I heard a horrible cracking noise and felt like a firework in my upper right arm. The pain was so excruciating that I asked my wife to call an ambulance. At the hospital, the internist asked for an X-Ray and one hour later, he told me my arm had broken on an old cyst. No urgency to go back home immediately he said; So we stayed the whole week as planned and returned home one week later. On the first day back in Luxembourg (14th May 2019), I went to my general practitioner who immediately sent me to see a traumatologist. As of that moment, everything started to snowball: I went from one medical examination to another, I met an awful lot of doctors (and internists) and I was confronted with some extremely non-empathetic ones, like the professor who told me – gazing at his computer screen and not even looking at me – that I had a malignant tumor. Bam! That was the first big shock.
I felt completely disorientated, so we decided to go to Brussels for a second opinion. There I immediately felt more confident. But unfortunately, the oncologist and orthopedic specialist reconfirmed it was a cancerous tumor. A biopsy was programmed for 27th May and on 3rd June I received THE phone call confirming I had a stage 3 cancer in my right arm upper bone (sarcoma).
Start of the treatment
Once again, things went very fast: The first chemotherapy was launched two weeks later on 18th June 2019, the first of a series of six chemotherapy sessions, taking three full days each, this was repeated every 3 weeks. On the very same day, they had to saw my arm cast right open, as my arm was heavily swollen and so compressed that I could not stand the pain any longer. On the second day of my first chemotherapy, a colloquium of five doctors gathered at the foot of my bed announced that I had a compartment syndrome, which could lead to an amputation of my right arm or even my shoulder.
Bam! The second big shock.
They tried everything they could to keep the hand tissue alive, but nothing helped.
As of the moment doctors told me I had a very aggressive type of cancer, I decided to call my tumor PacMan (named after the electronic videogame). The tumor grew so fast it had reached the volume of a wine bottle. There was nothing left but skin and the tumor. I had to wait until the tumor was in necrosis stage (dead body tissue) before being able to have surgery..
The amputation
On 22nd August, the orthopedic surgeon confirmed amputation was inevitable if I wanted to stay alive. Therefore, he programmed it for 28 August 2019.
The evening before the amputation, I said farewell to my arm thanking him (not ‘it’ as my arm was a part of me) for everything he had enabled me to do, for every happy moment and explaining him that it was as difficult for me as for him to be separated. Unfortunately, this was the only option for me to stay alive!
The surgery went well, although the surgeon had to amputate the arm a bit higher than originally planned. I must admit it was impossible for me to look at my right arm on the first day: my eyes turned only to the left and my whole body avoided being ‘in contact’ with my right arm. The next morning, nonetheless, I started touching my stump and decided to face the situation looking at myself in the mirror.
Bam! The third big shock!
I could not stop crying; it felt awfully strange to see a part of my body missing in that f****** mirror. It all looked so unreal, although this is how I am obliged now to see my mutilated body in the mirror every day. I still could feel – and still can feel – my right arm, although it was removed more than one year ago already.
During all those weeks of treatments, before and after the amputation, I have been through all kinds of side effects, from cancer sores to hair loss, to incontinence, to neutropenia, to blood transfusion and even to fever flare.
Fighting back
Ten days after the amputation (12th September) the stitches were removed and that same day, I went out for lunch with a friend. She was astonished to see me going to a restaurant that soon, but why should I wait to come back to life? I knew the second series of 3 chemotherapies were to start a week later. The little hair that had grown back would fall out again, nails would break again and I would lose weight again. So, I wanted to enjoy these few days of respite. After the amputation, I went to a rehabilitation center to learn how to execute daily gestures and to find back my body balance.
A bit later, my oncologist finally came with good news: We had gained the upper hand on PacMan!. Nevertheless, I had to continue the chemotherapy; the last one being planned for November 2019.
After about 6 months, I could – finally – go home (in the middle of December 2019). That first day back home was a huge relief! It meant the end of all this struggle, the end of all this sickness. Nevertheless, it was difficult for me to find my place in our home again, where my wife had taken over everything during all that time.
Immediately after the amputation, I was anxious my life would blow up and nothing would be the same anymore. I could only think about the “impossibles”, but with the help of my psychologist I learned, day after day, to see also the positive things.
Physically, my hair started to grow back slowly (curly and black instead of smooth and blond), my nails became stronger and, most important of all, I could enjoy eating again.
The bad news though was that the phantom pain (pain that is localized in the region of the removed body part) persisted in my full (amputated) right arm.
A new life
In May 2020, one year minus one day after the beginning of this story, I finally went back to the office, to start on a therapeutic part-time basis for the first three months. The other half time was filled with all kinds of therapies such as acupuncture, physiotherapy, ergo therapy, mirror therapy, balance exercises, reiki, and many more. In August I had to go back to work full-time, but it was really too much and it became impossible for me to combine work and health, so my oncologist decided to put me on sick leave for three more months (until the end of November). The medical advisor at my work suggested I should apply for an invalidity pension, but this was not conceivable for me! I insisted on staying, but no longer as a director’s assistant, I had to give up this job because of my handicap. Luckily, I could stay in the same management team with the same colleagues, but had to incorporate one of the three units, with a back-up function.
Coping mentally and physically
During all this misadventure, I was very lucky to have a loving and even more caring spouse. She drove 500 kilometers every weekend between Luxembourg and Brussels to visit me at the hospital or at the rehabilitation center. To offer me at least one positive thing during this devastating period, she proposed and exactly 5 days before the amputation (on August 23rd), we got married. The ceremony was in a very small group and, as I was still very tired from the chemotherapy, we had no wedding party nor honeymoon. This was initially delayed but because of the Covid-19 pandemic, we still could not do it.
Also, my friends have been proven to be very valuable, both those in Brussels (where I had most of my therapies) and those
in Luxembourg (where I happened to come back occasionally). They all did all what they could to make my days – and
sometimes my nights – more pleasant. I was like a pregnant woman, having very specific desires. And as I really had to
gain weight because of losing about 10% of my body weight due to the chemotherapy, they did all they could to satisfy my whims. I must confirm the saying: It is during the bad times in life that you know your real friends! Unfortunately, I have been disappointed by some of them who I thought were really close friends I could count on, but I have now deleted them in my address book.
What was hard – and it took some time – was to accept my new self-image, physically AND even more mentally. All these things you have to go through really do change your personality, in every perspective. It makes you see life very differently than before; one’s priorities in life do change a lot.
As I said before, since the beginning I have been followed by a psychologist specialized in oncology. She came almost daily to check if I was OK and, when needed, she stayed in my hospital room until I felt better. As the phantom pains still did not fade, even some months after the amputation, she invited me to write a letter to my arm, which helped me to accept the loss of my arm. Unfortunately, it did not take away the phantom pain. It also made me realize that the word “death” never crossed my mind.
In previous years, I was passionate about
photography, but how could I take pictures left- handed and with only one hand? None of the camera brands offer an adapted camera for people in my situation. What a disappointment! Notwithstanding, I found a new passion which I discovered at the rehabilitation center. There I tried out my hand at silk painting and realized I was totally absorbed by it. Nothing else around me existed anymore, neither the surroundings, nor time. During these last five months, I have manufactured three big scarves of different styles and it is only the beginning of a new love story…
The impact on my daily life
The first thing I learned is being a one-handed left-hander. I must admit I was all thumbs during the first weeks! (no pun intended). You realize many things become very difficult or even impossible: Putting on your bra, tying your shoelaces, closing a zipper, putting on a watch or jewelry, cutting your meat, washing the dishes, opening a bottle or a tin can, stapling and punching, typing on a keyboard, and so on. I must admit I have yelled and cried quite regularly when things did not go as expected. Until today, I have listed about 40 things that became difficult – see impossible – for me with only one hand/arm.
Losing my arm did force my brain to work on finding solutions and being inventive and creative, to find means to “replace” my right hand. My chin and my knees gradually become precious co-workers.
Having only one hand/arm also implies being unable to execute two tasks at the same time; It is already difficult enough with your only hand/arm. Therefore, “adapt” became my slogan.
I really look forward to my prosthesis as it will enable me to accomplish some daily actions, even though I keep in mind it will never replace my hand nor arm. Adopting it asks for a lot of motivation, training and concentration, but it will help me regain a little bit of independence.
Some key messages I would like to share with you
This whole story forced me to quiet down and become more patient. For somebody who was quite (re)active, this was rather difficult in the beginning. It took some months and occasionally I still feel that my old habits resurface. On top of this, I was quite a perfectionist, and here too I had to lower my demands. I can tell you now that life isn’t all about productivity! It can be lived more slowly and more intensely without any prejudice!
During my readings while I was sick, I came across the following quote: “When life gives you a hundred reasons to break down and cry, show life that you have a thousand reasons to smile and laugh.” I really liked this one as it reflects who and how I am.
As a conclusion, for those who are up to a challenge: Put your dominant arm behind your back and, for at least 1 hour, try to live your daily life. Have fun!