Friday, 27 November 2009

Tears of Frustration

I came home today after my visit to the ENT specialist and burst in tears of frustration. He couldn’t understand why I hadn’t been referred to him earlier, considering I have insurance and I have been suffering for eleven months. He told me that I must have at least a month of high-dose antibiotic specially designed for sinusitis as well as nasal washes. He has arranged a CT scan for me (in the middle of radiotherapy!) and warns me I may need an operation. He knows this may put back the transplant. I have explained that the lymphoma may grow back and he understands my dilemma.

Some people, whether they work in the private or public health area, are really efficient (like my oncologist) and others just can’t get their act together. What worries me now is if the Bone Marrow Clinic are inefficient over their administration, how good are they at their job of doing a transplant? How concerned are they about individuals? How observant are they? Do they have a sense of urgency?

With the NHS we are encouraged to be passive and have things done to us. When going privately, we seem to have more say about our treatment. The specialist today asked me about my hearing; obviously ear, nose and throat are linked. I explained that I had had two types of tinnitus since having a reconstruction operation after in situ ductal carcinoma so I know he understands that I have been put through the mill by the medical profession.

On Monday I should start with the radiotherapy. Perhaps they will be kind enough to let me know how long I will be having radiotherapy for as it’s been difficult arranging other medical appointments around it. There are so many ways in which the NHS is good but they just don’t get the idea that everything does not revolve around them. Of course the treatment is essential but when you contrast the NHS attitude with that of the private sector it’s like chalk and cheese.

It’s really made me question whether I want my transplant done in the NHS hospital. I have talked to BUPA who have told me I qualify for a private transplant but I would need to find out whether the same bone marrow donor would be available for a private transplant as for a National Health one. Nothing is ever simple. It would be very difficult having not only the transplant done in London, but attending all the hospital appointments afterwards which amount to about three a week.

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