Tears

Well, two posts for the price of one today! Sarah has let me on again!

I wanted to post today because last night was a very special night for me. You may have all noticed that Emma has not blogged, although we have mentioned her a few times. She isn't going to blog today either, but this entry is predominantly about her and the amazing woman I truly believe she is going to be.

In the last few days (possibly even weeks) I have noticed my relationship with Emma has been somehow diminished by the fact Sarah and I have had many conversations about my illness and the things we may have to decide upon in the not too distant future from which Emma has been excluded. We have told oursselves the reason for this is, of course, the future is truly unknown and to tell Emma some of the doctor's thoughts and predictions could well result in her experiencing stresses and worries that are proved ultimately to have been pointless and unfounded. The result of which has been a lack of integrity for me and a feeling I am placing a barrier between the two of us, and Sarah has felt the same way. Last night, I had the opportunity to talk to Emma as Sarah was out having a massage, and she and I were alone in the house. SHe'd just done some homework on her new Christmas laptop, and sat in the wheelchair to have a little spin around the front room.

I asked her "A lot has been happening in the last few weeks with hospital appointments, and the oxygen arriving and the wheelchair and all that, and I know you've not asked anything about what's been going on, but I wondered if you had any questions about it?"

She told me she didn't, and then added "I know that the doctors gave you three years Dad, and that you are obviously not well, but you're looking ok." I said that waws true about the doctor's opinions, and that they had, over a year ago now given me two to three years. But then I added, "And right now, sweetheart, they think I am very poorly."

"Well, I know you said yuo are not going to give in, and I can see that you have been doing your best to keep going," she told me. Then she added, "What will happen, Dad? I mean, when you get very poorly, what will actually happen?"

I told her that was a very good question, and laid out the facts Sarah and I had been discussing, namely, if I did not recover, being nursed at home (as I would get more and more tired and need to be in bed almost 24 hours a day), going to be nursed at the hospice (again for the care to be 24 - 7 but for me to be out of the way of both her and Sarah's day to day activities at home). I told her the hospice was very different to the hospital, being without visiting times presribed, private rooms which you can personalise, and a facility for them both to sleep over if they wanted to. The last option was the hospital itself, and I told Emma that would probably only happen if I fot a serious infection, or had to go in for something else.

"I know you talk about the possibility of getting better, Dad," she said, "But what do you think about your illness really, without the miracle cure." So there it was, the opening for me to tell her the truth about what had been going on in all the appointments and discussions. So I told her this. "Darling, in the opinion of the doctor's, if I were listening only to what they said, then next Christmas is a very long way away. In fact, even Summer is a very long way away, becuse to their eyes, I am very poorly indeed." Still sitting in the wheelchair, she stopped the slight back and forth rolling she had been doing, and her eyes began to tear up. I said nothing, knowing I should not speak. "And," she said, "are you scared?"

"Scared? Well, in terms of dying, no I am not scared, because my beliefs and my thoughts about what happens when we die are nothing to be frightened of - in fact, the Buddhists say that death is such a wonderful experience, it should be seriously celebrated by all the people who know the one who has died." Then I paused to see if she had anything to say about that before adding, "In terms of whether or not I am going to die, I have to be really honest with you, Em, and tell you I am really worried about it, and that I am very poorly as you can see with all this stuff around us."

She said nothing for a few seconds, and I was just about to say if she had anything else to ask when, with poor timing, the phone rang. I could have ignored it, but I didn't, and it was my GP. As we spoke for a few minutes, Emma went back onto the laptop and began writing away, her fingers tapping out very quickly (she is a quicker typist than I by far!). When I got off the phone I asked if she had anything else to say or ask, and she said, with a smile a few millimetres from tears, "No, that's ok!"

After double checking, and getting the same response, I decided not to push it, and I went into the kitchen to put some cooking stuff into the dishwasher. Less than five minutes later, Emma came out to the kitchen and said, "I am just going to the shower." Her eyes were still red, and I reached out and gave her a hug. "can you switch my laptop off please, Dad?" And she went upstairs to shower.

On the screen of her laptop was a document, entitled simply "Dad". She had written a letter to me and knowing I would read it if she asked me to shut down her computer, ahd left it in full view for me to read. I would love to reporodice it here for you all, but I am treating it as confidential until she tells me otherwise. I can tell you this much: in it I was given permission to die, by her saying "please do not think you have to put yourself through any more pain than you are for my sake. Although I am scared shitless, I know I will be OK, and me and Mum will do fine". There were other things even more amazing, even more insightful, and even more thoughtful. Recalling it now, I am in tears, mostly of pride and awe, with more than a hint of sadness. I have no idea what whe will grow to be and do. I only know she will be an amazing woman, because in my world, she already is.

I should probably end there, but another thing happened last night which is that when going upstairs to bed, even though I was carrying oxygen, I became short of breath again. I do not know if it is panic attacks, or if it is based in something physical, but it took me twenty minutes to get into bed, and with the oxygen still on, try to get some sleep. Then it happened again when I woke up once in the night. How I stopped it this time was to ask myself what is the worst that could possibly happen? The answer is, "I die by asphyxiation." After my conversation with Emma, and having to be honest with myself, I then said, "And that may well not be such a bad thing. Better than fear, pain, and slowly falling further and further into a deep sleep I know nothing about." It stopped the panic almost straight away. In the morning, however, I told Sarah that I wanted her to stay home with me, that I did not want to be parted from her and that I would be scared if she was not here. And that is how we both get to blog on the same day!

A doctor is coming round soon to check on my lungs, so we shall see if there is more physical reasons for my shortness of breath, or if it is all me playing mind games with myself. I know that for some people, contemplating my death and saying "it may not be such a bad thing" is the equivalent of a Cardinal Sin! However, one friend of mine sent an email to me a while back, and it is one I have read a few times now: the words are from a woman with cancer, who had a near death experience when she was a child and was close to death again now. She writes: "People keep talking about the miracle, and how I will be cured. For me the miracle is death! For far too long I have been kept from that feeling of love I felt when I "died" as a child." So perhaps, I can take a lesson from her book, and say just this: I am not dead yet, and all the time I am not, I will be giving it my all. But death is not a big scary thing to me either.