Many aspects of treatment may cause problems for some patients. Here are some examples that others have shared with me.
• The thought of having treatment so close to the brain and optic nerves, both surgery and radiotherapy.
"It's an invasion inside your head."
"I have experienced and now suffer with dizziness, tinnitus, and hearing problems since the RT treatment. I feel angry that the RThas done this. I could not cope with treatment and cannot accept what it has done to me."
• When the patient has needle phobia.
"I have and do suffer from psychological problems, needle phobia being the most inconvenient because of the nature of the tests. Also, I am GH-deficient and inject daily. It took me and the specialist nurse almost a year before I was able to get round to injecting myself."
"On the plus side, my needle phobia is cured: I used to faint with injections, but I now inject myself daily!"
• When local health authorities will not pay for essential drugs.
• The prospect of becoming hormone deficient after radiotherapy.
• Worrying about taking too much hydrocortisone.
• Worrying about not taking tablets (especially hydrocortisone).
• The claustrophobia experienced with MRI scans and with the radiotherapy mask.
"Brain scans [MRI] are absolutely frightening. The experience of going through that tunnel leaves me cold."
• During radiotherapy relationships build up with other patients also waiting for treatment. They mainly have cancer; they may think you have a brain tumor.
• Having to have all this treatment at all, even though there are positive aspects of life long-dependency on drugs and having regular checkups.
• When expectations of treatment are not met.
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