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12 Jul 2005

Re: Alone
Dear CS
Where is the delete button? I shouldn’t have posted that message. Things are never as bad as I make it. We live in Pretoria and the people I’ve called seemed to be overwhelmed by the patients they already have. They said that perhaps they can send someone to assess the situation, but it would be difficult. I’m so embarrassed by everything I don’t even want to ask anyone for help anymore. We should accept it that we are nothing more than a nuisance.
He is badly deformed and crippled by the illness. Severe Lymphodeama, as a result of the cancer, is causing the sores on his legs. It is basically just one sore on each leg, stretching from his ankles to his knees. His legs are becoming green now. I don’t think green is good. The doctors don’t even want to have a look at his legs. It has been made clear to us that we are responsible for his condition because he refused potential lifesaving treatment for the cancer. Now it is too late. His dr. had suggested hospitalisation for pain control, but he doesn’t want to go. His reaction and the decisions he has made about his illness have never been rational. I should have done something about it and I didn’t.
Answer 365 views

01 Jan 0001

Hello El-Jo,
Things are often not quite as bad as they seem --- but it's the "seem" that we feel and respond to ! Neither of you is a nuisance to anyone, and if those groups, like Hospice and Cancr Association who raise very large sums of money to provide exactly the sort of help you need, can't be bothered to get enough trained stafs and provide the care they get well funded to provide, then that is simply disgraceful. And neither doctors nor anyone else is entitled, according to the ethical codes of their health professions, to EVER neglect a patient, or to become spiteful if we don't accept their advice, especially as regards treatiment that MIGHT have been life-saving or might not.
Green doesn't sound at all good, and someone medical really ought to look at those legs. Lymphoedematous swelling can make limbs more at risk of wounds that heal badly and which can get infected, but there are many things that can be done by skilled palliative care, to reduce such swelling and to help such wounds.
I wasn't possible for you to force your husband to have treatment that he didn't want, so don't allow yourself to feel guilty about that. Technically, if the treatment was all that likely to save his life, then the doctors might have found ways to require him to accept the treatent, though such methods are rarely used. They have much to feel guilty about, but not you.
See if you can persuade him to accept a period in hospital to enable the doctors to find the best way to control his pain --- that doesn't mean he'll be stuck in hspital permanently, but one needs the control of an inpatient situation to be able to gain control efficiently and effectively of such a complex clinical situation, and then to find the best way to maintain pain and other symptom control when the person is then able to go home, more comfortable and able to be looked after more easily.
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