Dr M faxed a letter to my GP, Dr H, to tell her that I had been put on this new drug which we hope will work but also asking her to initiate palliative care support. She immediately telephoned us and came round to our house that morning. Dr H has already been to see us before but it is not until you really need a service that you can take it all in. We talked about the sort of assistance we thought I would need and she is both helpful and sympathetic.
I was aware that I would probably have a lot of help in managing pain and sickness but I needed to explain my phobia about not being able to breathe. When I was very young, another child put two cushions over my face and sat on them so that I nearly suffocated. Difficulties with breathing were further compounded when I was a child as I had adenoids and lots of catarrh. We were absolutely amazed though to receive a call from a medical oxygen supplier and by 3.00 p.m. a cabinet was installed on the upstairs landing with sufficient tubing so that I shall have access to oxygen wherever I am when I come to need it.
By late afternoon/early evening I began to feel really ill and had to lie down in bed which is unusual for me. As I have no wish to return to hospital, unless it is something which is necessary for a doctor to treat, we have to deal with this situation ourselves. Fortunately, I am much better today but it shows us the need to have met the palliative team and know how and when they can help.
This morning I have spoken on the telephone to one of the nurses on the palliative care team and she will be seeing us on Monday. I really want Raymond to know that he has some support on which he can call together with advice, as otherwise it is a difficult situation to be in.
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