02/03/05 Abbie’s pain and condition reached a terrible peak yesterday. It was the worst day ever.(Apart from 2 days ago when I took Abbie out to get some clothes and she collapsed at the checkout in her wheelchair. I had the first surreal moment of panicking thinking ‘this is it’. Everyone ignored us. Abbie revived and I took her home as quickly as I could).
Yesterday was so harrowing and exhausting – it was like doing three days in one. For a start, Abbie was so bad with pain that she could barely function. Secondly, her four year old son was too distraught to leave her for nursery. I’ve never seen anything so emotionally raw and tender in my whole life. All he wanted to do was snuggle up to his mum. At this point, Abbie could barely move or speak but she could hear. He asked her to rub his foot like she did when he was a baby and she did. While she did this he just stroked her face and kept telling her he loved her. He is only 4 years old. She then turned over and he cuddled into her. Truly galling. As Sally (Abbies mum) said – it was like his last goodbye. Heart-achingly, jarringly painful. We both left them alone and sat in the kitchen crying our eyes out and holding each other for support. We rang the doctor and he ordered a whole load of morphine patches. These were like the most incredible miracle cure. Of course, there is no true hope. The only hope left is that Abbie does not suffer any more pain.
The morphine transformed Abbie so much that at lunchtime she summoned a lawyer and asked for her family to be present. She then announced that she didn’t want Charlie’s natural father to have custody of Charlie once she died. They are divorced. She wanted her sister to be Charlie’s legal guardian/custodian. The family were completely stunned. I knew this was coming. I don’t think Abbie truly believes this can happen. The only person to lose out will be her son. Hasn’t/isn’t he going through enough?
I think I can only try to appreciate how awful it must be to have a fairly precise time of death hanging over you every day. You must feel like you have so much to hang on to and tie up. Which is exactly what she is doing. She never particularly liked her ex-husband and always criticises the way he looks after Charlie when he has him. IN saying that, Charlie loves his Dad and likes going to his house. Imagine how he would feel losing his mum and then losing his dad for no reason at the same time? The family were distraught and Abbie was adamant despite the fact that Charlie would have to go into care while all the legality was being sorted out. Don’t you just love America? I kept schtum and just listened…..until the day I left. I had been awake here and there in the night going over it all. Much as it is only my opinion, I didn’t feel it was right and it seemed to be more that Abbie wanted to punish her ex-husband permanently after her death. This wasn’t about Charlie. This was about her and her ex and possibly deep down her frustration and anger that it was her going and not him!! So I told her what I was worried about and she cancelled the custody order much to everyone’s collective relief.
So that was a big day. Then the wonderfully brash and outspoken doctor Andy turned up. He told us that Abbie had 4-6 weeks left, possibly less. Crazy that it was, we all practically collapsed again even though we knew that this wasn’t new news. I’m glad he didn’t beat about the bush and was both startled and grateful for his unashamedly honest delivery. He must have felt the tension pinging around the house when he entered. I know he could feel it. He asked us how we do it and we said said we just ‘do’. She has turned down offer of a hospice and a nurse and we are helping her until the end. God, that was the worst day.
You can feel the stages trickling by each day. The morphine makes her so much more able to converse and generally perkier BUT the cruel reminder kicks in when she trys to get up and do something simple like go to the bathroom. It takes one and soon two people to help her sit upright as her condition declines. We then have a bit of balance gathering and up for walking. Another pause. Her balance thanks to the bulk of the tumour has gone. She lists to the left and suffers a lot of dizziness. She is weak and in the last week her left foot is beginning to drag. But you have to keep going and stay focussed for her. Don’t get me wrong – we have all had our moments. Often, when we can see the other one carrying her and can see the undignity and seriousness of it all for her it rips you apart inside. This is it. I can’t quite believe or accept it although writing this journal is the only way I can express my feelings for the moment.
I didn’t cry when I left. I nearly did but I told Abbie I was coming back so I couldn’t. I wouldn’t cry infront of her anyway. I’m sure that’s the last thing she wants. It is bad enough and she has been complaining about all the well intended but appalling letters she has been sent basically talking about her to her as if she is already dead. In fact, we had our own sick joke going – if the phone rang which it did incessantly and she heard it was someone she didn’t feel like talking to she would shout out “she died last Thursday!” We joked about sending replies to the multitude of cards and letters back with the short phrase “not dead yet thank you”.
As I write, Abbie is in decline but rather manic and repetitive. We are still laughing and I am due to go back soon.