Looking to the future

After three days of pathetic in-fighting a chastened district nurse came to see me and flushed my hickman line. Ray had to go to the surgery and insist either the nurses did it or they found a doctor who could. This flushed them out! The whole point of this was not only to get the line checked and cleaned but to ensure that this procedure could be carried out by someone at the local surgery when I come out of hospital.

The literature about central lines cheerfully says how some people like to do this themselves, well perhaps they do but it’s easy to make an error and in fact the nurse could only flush through two out of three lumens and the third line will have to be cleared by the Marsden when I go in on Monday. The hospital have sent me a reassuring email to let me know that they will do that. Part of the reason for having a nurse do the procedure is also to check for early signs of infection and to be able to discuss any other aspects of problems which could be cleared up if caught early. So after lots of apologies from the district nurse and my own GP a relationship has been set up and we hope this will be helpful.

Those three days caused me a lot of stress. I am treading a fine line between keeping calm and toppling over the edge. I don’t want these days before going into hospital to be a series of crises and emotional outpourings; it’s so unnecessary. I felt so much better physically and mentally once it had been sorted but once again it’s thanks to Ray’s persistence and refusal to allow me to be taken to the General Hospital where I might pick up an infection at this late stage which could prejudice the whole transplant.

Whilst we have not received the support we could have expected from medical personnel, we have had so much from other people: cards, messages and just kind words from people we encounter. I suppose normal people can see how they or their families are affected by serious illness and the empathy is there. I am glad that Ray is also getting the support he needs because at the moment he is carrying me.

Today my GP took samples of my DNA which I shall store as after the bone marrow transplant my DNA will change. I explained that maybe sometime in the future, it may be possible to find some half-siblings or perhaps even further in the future, scientific advances may mean that females will be able to trace their paternal ethnicity. Even if it is too late for me this could benefit my children. I have to hope that perhaps at some point the law will be changed so that no other people are born who have been deliberately separated from their genetic heritage with all the problems that this brings.

Here’s looking to the future!