29th May 2007
My goodness!! So much has happened since my last entry on 16.5.07. I’d better re-read that entry to see where we were at at that stage…
So I am pleased to say that that all-consuming terror that I had been feeling is the exception rather than the rule these days…despite the fact that the diagnosis has turned out a little worse than we expected. I definitely have sad times, but that deep, dark, terrifying place I was at doesn’t happen too often. I think I have accepted that she has cancer, and am currently just focusing on her treatment options.
The weekend was pretty tough. On Friday night she had about 4-6 beers with her best friend Wai, and Jay, and didn’t eat despite our encouragement to do so. She ended up throwing up at 2.30am and really suffered for the remainder of the weekend. On Saturday night she was crying in pain (across her back and where the para-aortic tumour is) and I just couldn’t bear it. I ended up crying with her. When I woke up at 6.30am the first thing I did was go to her room to see how she slept and to see if she was in pain, and she slept poorly and was in pain, and I just cried. In the end, when Jay got out of bed to get ready for work, I jumped in and snuggled up with Mum for an hour or so. It was so yummy!!
On Sunday we convinced her to try taking the oxycodon that had seriously made her throw up, and although she felt a bit nauseous and “heady”, it stopped the pain which was good. The more she took/takes it, I think the less nausea she felt. She also started taking my Fiorinal that I take for my neck, and has had two really good night’s sleep. When I hear that I smile. She’s also eating better…not having the heart-burn so much etc.
I still think and talk about it all quite a lot…but then sometimes also get sick of talking about it. When I do cry, it tends to be a brief outburst, followed by calm….so I guess you could say I am not in shock anymore. I guess we should enjoy this time before the chemo starts in some ways? As it will bring with it some challenges as well as some success with controlling the tumours.
We went to the oncologist last Thursday only to find out that the PET scan results were worse than expected and that there was “multiple boney tumours”. Also that the primary cancer had not been identified and that more tests were required. Whilst we understood the need to identify the primary, another week of waiting was not ideal. But here we are, close to the next appointment where I am sure he will tell us the primary has been located. This will bring the best possible outcome as they can treat it very specifically and appropriately, which will achieve the best outcome.
I am sitting here in the quiet of my place for the first time in ages. It’s actually nice to be “home” and not to be living out of bags and between my place, Brad’s and Mum’s. I must make a point of being here more, and getting time on my own more. It’s actually nice to have some “me” time. I probably should be in bed!!!!
On that note, I’m going to go now! Night night
Love you Mum. I am sending you lots of love and healing light. Xxx
3rd July 2008
It’s been ages since I wrote in here, and that’s not at all how I hoped it would be. When I started this I thought it would be a space to record every up-and-down of this journey, but there have been so many up’s and down’s and lefts and rights that I don’t think there’s been time TO write in here. My goodness – this is only the second time in more than 3-4 weeks that there has been the time and space (and inclination) to put pen to paper.
Mum’s in bed asleep I hope, though when I saw her to say goodnight half hour ago she was feeling very uncomfortable – it kinda seems like it’s the constipation from the morphine, but my gut feeling tells me it’s actually the fact that there is a tumour inside of her, just under her diaphram, that is taking up space where there is no room. She says “I feel like there’s a big lump stuck just there” (pointing to where the para-aorta tumour is) and that’s because there is. I know it’s an awful thing to wonder, but I wonder how you die of her condition? Will it just grow so big and push on her lungs/heart? Does it produce gases or something that cause undesirable reactions? I don’t know what sort of a journey lies ahead.
We had our first consult with the oncologist today since chemo, and since getting out of hospital. For the first time, she asked “how long have I got?”…well, she said something like “I haven’t got six months to live have I?” i.e. it’s not THAT serious? And he said “you’ve talking months not years most likely”. She was shocked. She really didn’t think it was that bad. I think that she thought she’d have chemo and it would go into remission for years and then maybe have to have it again years down the track. He said:
– it’s incurable
it’s sad….REAL sad!!!
It’s a gift (in disguise??)
It’s…not long enough
It’s a waste…and not, if we make some good decisions
It’s one hell of a mother fucking journey
It’s better than her dropping dead suddenly without notice one day, leaving lots of unfinished business
I love her so much I don’t want her to die