“When hospital was my home, I thought there would be no other way out, I felt it was my time to leave”. The experience of spending a long period of time in a hospital, can be challenging and transformative. However, it can also be an isolating and unnerving place, especially when visits from friends and family are too limited.
When hospital was my home: Stories of perseverance and hope
For some people, the hospital becomes their temporary home, a place where they receive ongoing medical care, and develop deep friendly with medical staff and other patients.
Today we will learn the story of three patients who managed to get ahead and can currently say “when hospital was my home”
When hospital was my home: Seth Burke and COVID-19
Seth is a 13-year-old boy with a lifelong progressive condition, who returned home after weeks in the hospital with covid.
He contracted this virus just days after becoming the first wheelchair user to serve as a member of the Welsh Youth Parliament in the UK. Him being the most vulnerable to the effects due to his condition, and was fighting for his life in intensive care. Seth remembered this epoch like “when hospital was my home”.
Seth has Duchenne muscular dystrophy, which made his covid treatment more complex. He tested positive for covid on December 13, 2021.
He was taken to the University Hospital of Wales in Cardiff and, after his condition deteriorated further, he was admitted to intensive care, where he was put on non-invasive ventilation to help him breathe a little better.
On Christmas Day, his parents prepared for the worst when his lung collapsed, but he recovered and finally came home days later.
Seth’s mother and father, Lisa and John Burke, said they had to face the possibility of losing him, yet they never lost hope that he would recover. Both they and his son were very brave and strong.
By New Year’s Day, Seth had recovered and was out of the intensive care unit and back in a hospital ward playing games and watching TV. However, as a result of the virus, he will feel the impact of the covid for a while longer. His parents said that he is much weaker and gets very tired, however, his doctors said that he would be much better as the days went by.
Already with his illness, the covid made Seth return to school some time later, with his friends, he managed to tell his story and expressed how lucky he was to have his parents by his side, and thanked the medical team, who accompanied him throughout this hard and long process “when hospital was my home”, like he said. His fears of leaving the house again were abysmal.
When hospital was my home: Tina and her cancer story
“When hospital was my home” is a phrase that for Tina, 31, marked a before and after in her life. In October 2011, she underwent a laparoscopy to remove her left ovary because of a cyst that was affecting her.
In another of her studies, she was told that they could also remove her left tube because they saw damage to her tubes. After the operation and recovery (somewhat painful, according to his account) came the report of the operation, and there he received the strongest news he had ever received… They had to operate again urgently because what they had removed was a tumor.
She was diagnosed with “clear cell carcinoma of the ovary” in its early stage. He says that he was very lucky to catch it in the first stage, but not because of the type of cancer, well, the reality is that he was the most aggressive type and hence his urgency. In these moments of anxiety and rapid decision-making, health professionals do not give much time to assimilate the situation and less to inform you about the existence of more options.
They performed a complete hysterectomy. That is, they removed even the appendix and numerous lymph nodes. After the operation, she went through the worst moments.
“I was more afraid of not being able to be a mother, and of the effects of menopause, than of the cancer itself. They were very strong days, both in pain and in patience. When hospital was my home, I felt a lot of fear”, was Tina’s testimony.
The best of those days, for her, was seeing all the love that her family and friends gave her.
“I didn’t feel alone for a second, and that was something I will always be grateful for: having my people with me, and making me forget”.
So, she initially treated the disease as a gynecological problem. In fact, she did not see an oncologist until the start of chemotherapy.
The first day of her chemotherapy was the worst day of her life, she says. “That’s when I became aware of the disease and its seriousness. Before, I thought of it as a cold with consequences…”
“It affected me to see myself bald, but since I hadn’t lost my eyebrows… I wore it well with my hats.”
It was winter. She managed to complete all her chemotherapy sessions, and she felt much better, she felt like a new and renewed woman. She managed to get ahead together with her family and friends.
Cristina and Hodgkin’s lymphoma: When hospital was my home
“I was 18 years old when a lump appeared on my neck and I remember as if it were today that my university classmates and I laughed, since we thought it was something unimportant”, were Cristina’s first words when she found out that I was sick.
After the first visit to the doctor, those laughs stopped because she noticed in all the looks of doctors and nurses that something serious was happening. They told her about a treatment that she was going to have to receive, but that she was not at all clear about what it consisted of, and they did not finish explaining it to her either.
The day of the explanation arrived: “you have Hodgkin’s lymphoma, you will receive chemotherapy and radiotherapy”, which for her at that moment she could only summarize “Ok, your hair will fall out, and you will have great discomfort during the days that each session lasts “.
The chemotherapy was hard on her, making her vomit a lot and feeling weak. Instead, radiation therapy was much better. The only thing was, her father had to do was 160 km, every day after work to take her to the hospital, since they didn’t do these treatments in her town. At that moment and from then on she said to herself “when hospital was my home”.
After chemotherapy and radiotherapy, an automarrow transplant was planned. There were a series of setbacks there, since after several attempts, it was not possible to get the cells out for auto-trasplantation. So the doctors began to look for alternatives and performed tests to find a bone marrow donor. The search was unsuccessful, no one was found, and the possibility of doing the transplant with an umbilical cord donor was raised. Due to the risk that this entailed and advised by a very good doctor with a lot of experience in the subject, we tried the autotrasplant again in another hospital and this time, finally, they managed to get my cells out.
This helped a lot with his improvement, although he recounts that the days “when hospital was my home” were full of tears and little hope, but then, they managed to see the light at the end of the tunnel.