I read, "Existing until better days come along" in a cancer booklet for carers when Mum was having chemo on Wednesday. Whoever came up with this sentence I wish I could hug. They understand what it is to have lost someone. There was something else I learned about which was anticipatory grief. It validated the way I feel right now. I wish I could thank the person who compiled that booklet because it helped me a lot. You think you know lots at 41 but I'm still learning every day. I'm so angry and sad and it suggested a diary could help so I'm going to give it a go.
Before I talk about My Mum's Mesothelioma, I need to write what's lead me to this point...
My Dad was diagnosed with Cancer when I was 25. I was the middle kid, the only girl. In my culture (Greek Cypriot) daughters are held up on a pedestal by their fathers, and although he was an alcoholic, he loved me very much and I always felt lucky to have him. He died when I was 29 and it was very hard to watch him die. So skinny and weak in the final months. They say it was because he smoked. He had throat cancer, and then lung cancer which is what killed him. Burying him was very hard but I was in robot mode because the year before he died my little brother (20 months younger than me) had developed a mental illness. I helped Mum with everything because my older brother didn't and still doesn't want to know because it hurts so much, and my little brother had schizophrenia. I handled all the admin for my Dad's death but Mum helped a lot. She picked his clothes and handled telling the extended family. She picked the burial plot and the headstone.
My Mum was clouded by my little brothers illness too so we were both on auto pilot through Dad's death. But, to help my Dad, I fasted for 40 days and did everything he wanted me to do. Support Mum. Don't fight with the family. He said he was very proud of me the night before he died. I was very lucky. He died in the afternoon. I asked Mum to check on him while he was in bed and all I heard was "come quick, he's not breathing". I jumped up and checked for his pulse. I called for my little brother who was in the shower. I called 000 but they insisted I perform CPR on him. It was awful. I think I broke his ribs.................. Awful.
Allen, my little brother, committed suicide around 3 years after we buried Dad. Allen was my little brother. I have no childhood memory that he was not a part of. He was my Mums baby and my baby brother, my friend. His brain broke the year before Dad die and watching his mental illness get worse and finally take his life was worse than watching my Dad die. It's not supposed to happen like this. He died in Byron Bay. My Mum and I leaned on each other and I couldn't have got to this point today without her. We had to both go to identify his body and burying Allen was no words.
I met my husband the year after Allen died. Until recently, I measured time either by "before Allen died" or "after Allen died".
I wanted a family of my own since I was a teenager. My parents were immigrants and worked very long hours to give us a better future. We had a petrol station growing up so we practically lived at the servo. Allen and I would play while Mum, Dada and my big brother would work. It was 7 days a week from morning till night. I wanted more. When I met my husband, we were instantly on the same page. We started a family 2 years after. Charlie was born in 2008 (4 years after Allen died). Charlie gave me reason to get out of bed. He gave me life. I'm so blessed to have Charlie. When Charlie was only 7 months we tried for another baby. Allen was born in 2009. Yes Allen.................... What an idiot! Or so I thought for a long time. When Allen was 6 weeks old I said to my husband I need to change his name, he suggested I get some help before then. From the time Allen was 6 weeks till around 3 years I saw therapists, was in post natal wards, and was on and now off anti depressants. I’m so glad I didn’t change Allen’s name. My son is so funny. I am no longer plagued by grief related to my brother. It took many many years but I can finally think about my bother without being angry and sad (although there are still some days when it feels as though he jumped off that cliff yesterday). My son Charlie gave me life and my youngest son Allen lit is up (my son Allen is a blessing). I’m so lucky to have 2 little boys who make me smile and keep going whether I feel like it or not.
My Mum helped me through all those post natal months and sleep deprived years. Charlie started to sleep through the night when he was 5 years and 4 months and Allen started to sleep through the night when he was 5 years and 2 months. Allen is now 5 years and 5 months so for the last 3 months I’ve had uninterrupted sleep and I feel back t normal, whatever that is.
In June, when I got my sleep back, Mum couldn’t breathe. She had a lot of trouble when her chest so she got some scans. She was admitted into hospital the day a lung specialist saw the scan. There was so much fluid. They drained 2.1 litres of fluid from her right lung. Poor thing. I sat with Mum all day and every day. It was very hard because I also wanted to be with my boys but between my husband and my bother, the boys were well looked after. On her discharge they took more scans to ensure they got all the fluid but what they saw was cancer. They went in a few weeks later to do a Talc Pleurodesis and took a biopsy at that time. She has Mesothelioma. They said in the beginning she has 5 years at best. Then when she had another scan 4 weeks later they changed that to 12 months. My Mum is my best friend. I helped her through the death of her child, and she helped me everyday with my boys. She's made me a better Mum and can't imagine life without her. After chemo I stayed with her for 3 days and nights which was hard coz I missed my husband and boys sooo much but I couldn't afford to get Mum sick. She's coped with the 1st chemo very well although between me and you I can see that the end is near. I'm so angry!
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.