My guide

Taken by Pandy in July 2007

20^th November, 2007

Did not manage to finish the above, fell asleep! The words SS has written are so heartfelt. I truly believe the reason I met her, was so she could be here to guide me through this part of my life, but maybe she is at a time in her life where she needs my guidance too?

I did not go to the graduation ceremony.  I am getting so tired and breathless doing only small things, which I think is a combination of disease and anxiety. I did think long and hard about it, and I am so grateful to C for organising it, but the feeling of safety I get from being here with my family is very important to me. I must try to go out a bit more.

I haven’t written about my party yet, and now I have the photos I can see it wasn’t sad at all. People are smiling and enjoying it. I am not sure what I expected, but it was great to see all my friends in the same place. I did feel a bit guilty that I had invited all of my work colleagues, but at the time we had arranged a lunch at Brockett Hall, which I then cancelled, so I think that is why it hadn’t crossed my mind. Marion was not there unfortunately, but I know she will be having a great time in India. I am really looking forward to seeing her at the end of the week.

I wanted everyone to know each other before I died, so that they may even become friends and can support one another. The saddest part of the party was when everyone had to leave. It was like saying a final goodbye. It was very surreal feeling holding everyone and saying ‘goodbye’.

I need to start thinking about my Celebration of Life, NOT funeral and write it down so that everyone (in particular Jue) are not left with too much to think about. I can see she is getting tired with all the people/ carers coming in, and the hassle and the sheer amount of organisation that I need. I love her so much for everything she is doing. I am not able to do anything to help as I create the work!

I am getting more and more tired and SOB when I do things and at times I feel just left*, I suppose I am dying and the it is just a case of making me comfortable. The syringe driver does seem to be working fairly well, I only need to take one or doses of Oxynorm for breakthrough pain a day. I am frightened of new symptoms, what will I do if I need oxygen all the time? I sometimes feel alone, but then I am not sure who I could talk to, to make me feel better. I wonder what it will be like without me here. I want to be remembered, but not as some amazing person because I am not, but on the otherhand, I hope that people don’t remember me in too bad a light!! It is such a strange feeling writing about not being here. Everyone dies, life goes on, that’s how it is, but I really hope I will be able to look down on my friends and family and help. In particular Juliet and her writing, which I hope will be the one thing that lifts Mum and Dad and her when I have died. She has already been 1 of 25 finalist in the Commonwealth Competition, she deserves it, she works so hard and has such belief in what she is doing.

I’m tired now, it’s 21:00. I’m going to have a wash and a cup of tea. I take forever anyway, so by the time I get into bed it will be gone 22:00. Everything is becoming hard work, even the smallest things. RIGHT! That’s enough moping, off to the bathroom and another day!

*I think Andrea is referring to the Doctors and nurses, as she felt they weren’t taking her shortness of breath seriously enough.