Last month I told you about the presentation I gave at one of Newcastle's hospitals. I had said that I would post some more of the talk I gave, so here are a couple of diary extracts I read out during the presentation. They're from a few years ago and are about the experience of being told that there is no more that can be done for you medically. This extract is actually two diary entries from consecutive days, and as with the previous ones, it is written here as it is in the original, with no ammendments.
'Dr. H. came round this morning. He told me there is nothing more he can give me, nothing more he can do for me except manage my catastrophic acute attacks as they occur. He says all we can do is wait for science to catch up with my disease ... however, I may not live that long. I take in his words. I hear them and react as though he'd said we're having egg and chips for dinner, but it clatters around my head with a stark reality for the rest of the day ... and probably will for the rest of my life. This is it. This is final. This is the way things are. My asthma consultant - this regional specialist and nationaly respected figure in his field of medicine - has informed me that he cannot offer any new hope of cure or management; that although my disease is not terminal it is however fatal and may well kill me before medicine has a chance to catch up with the extreme nature of my illness.
'Dr. H. says he's sorry. He leaves the room. I take in the news that I'd known within myself for sometime but am now struck in the face by the bullet of this truth delivered to me at point blank range. There's no way I can pretend that all this hasn't just been said to me. No way I can pretend that I've been told we're having egg and chips for dinner. No, this doctor almost seems to be preparing me for the end of my life, without being able to give a timescale, as he would if my disease were terminal like cancer.
'I ask if I would be able to have a bath - be bathed. I want to scrub this information from me, even though I know I can't. The nurse can't either, but she joins me in shedding a tear because she knows me, and she cares about me, and our lives have been intertwined by this place for the past eleven years. At least I am now clean from the blood, sweat and tears of the past days' fight to survive, even if I cannot clean the newly acquired knowledge from my mind.
'The information, the shock of its stark reality, the physical exersion of being bathed is exhausting and I collapse into a brief and fitful sleep in the hope that when I wake I will discover it has all been a dream.
'I awaken. It is not a dream. This is my reality. It feels very final.'
[The following day]
'I didn't want to open my eyes on today. Not only was I extremely tired from a fitful night's light dozing, and yesterday's crying, but I also didn't want to have to face the knowledge of all of yesterday's news again. Of course, lying there trying not to remember only brought it forward in my mind, and before long I was picking up where I'd left off in the night - wrapped in stunned tears.
'S (SpR) came round late this morning. I put back on my 'egg and chips for dinner' persona and asked him if I really heard what I thought I heard Dr. H. say yesterday. He knelt beside me and said that he was sorry and that I had heard correctly. My voice cracked a little as I said, 'I knew it really. I was clutching at straws ... It's hard.' He looked at his hands. He looked me in the eye. He said 'sorry' again, and said, 'Yes, it is hard.' Scrambled egg and chips. I know S away from this place - he goes to my church. Because of the doctor/patient relationship we sometimes have to have here, we haven't sought each other out as great friends at church. However, he knows me and I know him, and we are loosely involved in each others lives in a place beyond hospital and illness. I see he really is sorry ... and I'm sorry too.
'The rest of today has been a blur of visitors and imparting my new information to them. I don't have any platitudes for myself so I can't give any to my friends. I tell it how it is, unable to look after them with my news and they sit there as quiet and unmoving as I was yesterday when I was told. I see the information seep into their consciousness and they understand that although I knew it before yesterday's words had been spoken, the imparting of the news by the consultant somehow makes it more final ... more true ... undeniable.
'We prayed a short while and then R pulled the children's poetry book 'Please Mrs. Butler' from her bag and made us smile a little in this newly confirmed chapter of my life.'