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Huber (Betroffene)

At the age of 50, Mrs Huber developed a melanoma at the back of her head, caused by malignant melanoma. At first, she thought the symptoms were simply a stiff neck. The symptoms worsened: nausea, ravenous hunger and increasing headaches. Following a misdiagnosis at the A&E department, imaging was only carried out after her second visit to the doctor. This revealed a 5 cm tumour, which required emergency surgery. The operation was delayed due to her medication, so she was kept under observation for a few days. During her stay in hospital, she was acutely aware of her surroundings and remained positive despite everything. She appreciated the support of her family and the care of a nurse when she suddenly became anxious. Mrs Huber is married, has two children and a dog. Before the operation, her husband tried to discuss possible decisions with her; she now has a living will. The operation went well, yet some limitations remained: reduced function in her left hand, a restricted field of vision, and problems with temporal and spatial orientation. She declined a stay at the rehabilitation clinic and wanted to put the matter behind her. The limitations still make her angry to this day, especially when she cannot carry out tasks as she used to. She developed strategies for everyday life, such as having a maximum of one appointment per half-day and preparing the evening before. When dealing with her family, she sometimes wishes she had her former patience back. Before her illness, she worked as a speech therapist specialising in reading, maths and writing difficulties and also had training in graphic and web design. However, returning to work quickly revealed her limitations, meaning she now has to consider applying for a disability pension. At the time of the interview, Ms Huber was 54 years old. The interview took place at the University of Zurich.

VIDEO

She only underwent an imaging scan during her second visit to the doctor

As her GP was unavailable, Mrs Huber had to visit another surgery where the staff did not know her. She was given painkillers and balance exercises and sent home. It was only during her second visit that the doctor on duty took action, as Mrs Huber was exhibiting symptoms typical of a neurological condition.

Video Interview

TRANSCRIPT

And then I couldn’t see my GP, who’d known me since I was a child. So I had to go to one of those out-of-hours clinics. And the doctor said, well, to him it looked like positional vertigo, or something like that. And I said, to me it feels like something more serious, because I’m also feeling sick. And I then said, ‘I’m a speech therapist; I know what else might be going on in the head.’ And he reassured me, saying, ‘No, it’s a severe migraine or positional vertigo,’ and gave me some exercises where I had to lie on my back and move my head, so to speak, to get the vestibular system back on track. And it worked – they gave me strong medication, a strong aspirin. And I went home and the exercises caused me terrible pain. I had to lie on my back on the bed with my head practically hanging over the edge and then do these exercises. And it just didn’t get any better. It hurt so much that I ended up vomiting. And then, two days later, the medication wasn’t helping anymore either. The pain was always there. And I went back to the same surgery as an emergency. My husband drove me. And I really always had the feeling that I was about to vomit. And the doctor – it was a medical centre. And the doctor who’d treated me before wasn’t there, and the emergency doctor was there and said, ‘Good heavens (exclamation of surprise), a headache with vomiting and dizziness like that. We need to do an MRI straight away.’ And then I had to go to hospital. (---)

Other experiences by Huber (Betroffene)

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Huber (Betroffene)

At the age of 50, Mrs Huber developed a melanoma at the back of her head, caused by malignant melanoma. At first, she thought the symptoms were simply a stiff neck. The symptoms worsened: nausea, ravenous hunger and increasing headaches. Following a misdiagnosis at the A&E department, imaging was only carried out after her second visit to the doctor. This revealed a 5 cm tumour, which required emergency surgery. The operation was delayed due to her medication, so she was kept under observation for a few days. During her stay in hospital, she was acutely aware of her surroundings and remained positive despite everything. She appreciated the support of her family and the care of a nurse when she suddenly became anxious. Mrs Huber is married, has two children and a dog. Before the operation, her husband tried to discuss possible decisions with her; she now has a living will. The operation went well, yet some limitations remained: reduced function in her left hand, a restricted field of vision, and problems with temporal and spatial orientation. She declined a stay at the rehabilitation clinic and wanted to put the matter behind her. The limitations still make her angry to this day, especially when she cannot carry out tasks as she used to. She developed strategies for everyday life, such as having a maximum of one appointment per half-day and preparing the evening before. When dealing with her family, she sometimes wishes she had her former patience back. Before her illness, she worked as a speech therapist specialising in reading, maths and writing difficulties and also had training in graphic and web design. However, returning to work quickly revealed her limitations, meaning she now has to consider applying for a disability pension. At the time of the interview, Ms Huber was 54 years old. The interview took place at the University of Zurich.

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Huber (Betroffene)

Point of contact for loved ones

Following her cancer diagnosis, Ms Huber and her family were assigned a dedicated contact person who helped them adapt their daily lives to the new situation. It was particularly important that this person was willing to listen to their concerns and questions and helped the family cope with the challenges brought about by the illness.

Procedure after brain damage

Brain damage

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Huber (Betroffene)

Orientation aids in the intensive care unit

At first, Mrs Huber felt disoriented and anxious in the intensive care unit. She was grateful for the helpful guidance and clear explanations regarding the ongoing medical treatment, which helped her to find her bearings.

Procedure after brain damage

Brain damage

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Huber (Betroffene)

“I had the feeling he was looking forward to the operation.”

Ms Huber was briefed by the surgeon about the upcoming operation. During this discussion, she learnt where the tumour was located, how the operation would be carried out, and what the risks involved were. This information helped her to better understand the situation. Overall, she trusted the surgeon, as she perceived him to be competent.

Decision-making

Brain damage

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Huber (Betroffene)

Compared to others, Mrs Huber took her condition less seriously.

Mrs Huber took her cue from the condition of the other patients on the ward. By comparison, she took her own situation less seriously, which shows just how strongly her perception was influenced by interacting with and observing others.

Decision-making

Brain damage

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Huber (Betroffene)

Back home, her family cried a lot.

It was only afterwards that Mrs Huber realised the heavy burden this had placed on the family.

Decision-making

Brain damage

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Huber (Betroffene)

"Perhaps I’ve pushed it out of my mind."

Before the operation, Mrs Huber was unaware of how uncertain her prognosis was and that a poor outcome was possible. Before the procedure, her husband couldn’t find the right words to talk to her about the possible implications for the future.

Decision-making

Brain damage

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Huber (Betroffene)

She only underwent an imaging scan during her second visit to the doctor

As her GP was unavailable, Mrs Huber had to visit another surgery where the staff did not know her. She was given painkillers and balance exercises and sent home. It was only during her second visit that the doctor on duty took action, as Mrs Huber was exhibiting symptoms typical of a neurological condition.

Decision-making

Brain damage

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Huber (Betroffene)

Mrs Huber used to have one appointment after another

Ms Huber has learnt to reorganise her daily routine. She now allows considerably more time for appointments than she used to. In doing so, she compares her organisational skills with those she had before her brain injury and realises just how much her planning has changed.

Identity

Brain damage

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Huber (Betroffene)

Delimitation

Mrs Huber learned to set better boundaries

Lessons and strategies

Brain damage

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Huber (Betroffene)

Tea and a chat: a small gesture with a big impact

Mrs Huber was very anxious before the operation. It helped her a great deal when a nurse brought her some tea, sat down with her and listened attentively.

Lessons and strategies

Brain damage

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Huber (Betroffene)

A message for the worst-case scenario

Mrs Huber left a message for her children in case she did not wake up after the operation.

Impact for loved-ones

Brain damage

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Huber (Betroffene)

Restricted visual field

Since her operation, Mrs Huber has had a restricted field of vision. This visual impairment affects various everyday situations. She illustrates this particularly clearly using the example of food preparation: tasks such as chopping food are more difficult for her, as she cannot reliably see things in the lower part of her field of vision

Challenges after brain damage

Brain damage

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Huber (Betroffene)

Problems with orientation

Since her operation, Ms Huber has found it difficult to find her way around both virtual and physical environments. This is evident, for example, when she works on the computer, where she struggles to navigate between programmes or use the keyboard. She experiences similar problems in large car parks, where she struggles with spatial orientation. At the same time, she reflects critically on this experience and notes that difficulties with orientation in such situations may also be part of her personality.

Challenges after brain damage

Brain damage

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Huber (Betroffene)

Mrs. Huber gets angry when she is unable to perform certain actions in a targeted manner

Compared to other people with brain injuries, Mrs Huber feels that her own limitations are less severe.

Decision-making

Brain damage

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