The long and winding road

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Well, it’s been a long time since I’ve blogged, lots going on though. Mum is half way through a 3 month stint of immunotherapy- so far no side effects but she looks frail and is a lot more dependent and verbally affectionate than before. She’d originally refused this treatment as there are few guarantees, and a likelihood she will get severely fatigued and nauseated. I think she only agreed as her doctor changed and suggested it, and as my sister and I were with her I think she said yes as she thiught that’s what we’d want. She continues to syphon off $50 notes to my daughter. My sister is still great – she flies in regularly to support both mum and me.

It’s 6 months since we were given 4-12months,  which is pretty disconcerting. We’ve got a few trips booked and each time we organise one I wonder if this will be the one we have to cancel. My fabulous husband asked me to organise a trip to Sydney to see Les Mis, something he knowsI really want to do, I wonder if we’ll get there? Last Friday we went for mum’s second dose of immunotherapy- she was too dehydrated to be cannulated, it took 3 oncology nurses over 45 minutes to succeed. Mum was so upset, it was awful to see her so vulnerable as her veins collapsed. She had thought she’d be ok to go to these appointments on her own but has now conceded that won’t be happening.Easter is approaching. I’m not religous but the significance doesn’t elude me, renewal and new life.

Every new day that mum is still with us is a gift.Each day that she is still with us and feels well is a bonus- I’m focussing on the present and appreciating each moment. My priorities are the clearest they’ve ever been, my love of family is as strong as it’s ever been and I’m gathering strength for the long road ahead.

Rocket Man

space stationSo discombobulated, I can’t think straight, I can’t eat. My brother came down and ‘let’ me tell him about mum. He was nasty- I know it’s because he’s an emotional luddite but it was still horrible. My little sister is coming home for Christmas, but she’s staying at a hotel instead of with mum so she doesn’t get stuck with our brother too ( 53 and lives with mum!!). Mum’s sad about that now- even though she understands that she’ll actually get to spend more time with my sister as she’ll come and get Mum and take her out each day while she’s down. Our brother made it very clear he wouldn’t be going out of his way just because it’s mum’s last Christmas, but he’ll go out of his mind if the rest of us do stuff with her and he’s left out.

Parents are supposed to die, it’s still not ok when it’s happening, but it is a normal part of living.I can do death- I know my feelings are normal reactions to learning that my mum is on limited time. But why oh why do others have to complicate everything with selfish attitudes and ostrich behaviours? A lighthouse doesn’t seem far enough away at the moment, might need to consider a space station….

Stormy Weather

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Feel so flat- mum’s oncologist called me today. She’s palliative. Luckily she is still largely asymptomatic, so there will only be intervention to manage any symptoms as they arrive. The time frame is back to a few months to a year with strong advice to make this Christmas special.

The thing that is really pissing me off is that my older brother still refuses to be told anything about it. It seems pretty selfish to me- I could do with his support. Also he lives with mum so he really should be aware of signs to look out for and just have an idea of what’s she’s going through.

She told the oncologist she was satisfied with her life, that her kids were all ok and that she misses her husband ( dad died 16 years ago at 59 of Renal cancer) so I guess she’s accepted things BUT she wont actually tell any of us kids what she know about the prognosis, which is why the oncologist rang me.

On a scale of light breeze to Hurricane , things certainly feel very stormy at the moment.

Please don’t put me underground

imageI don’t want you to think I’m a whinger or a pessimist, in fact I am the exact opposite, at times positive to a fault. I’ve had a fabulous day,my school had it’s annual fair which is such an amazing community effort. It warms my heart to see so many people come together for a common cause. I’ve been comfortably busy all day, with no spare room in my brain for maudlin thoughts. Then came the drive home. I was quietly content, very pleased with how the day had gone. My kids and husband came along to the fair and helped out- one of the many times when my work and home life melded seamlessly. My playlist kept me smiling- some Arctic Monkeys,a bit of Temper Trap and even a walk down memory lane with Bruce Springteen. Then Megan Washington was soulfully singing ‘Underground’. This is an amazing song about what she wants to happen  when she dies. The chorus begins with ‘if the day is sunny let my father say some words and if the night is starry let my mother tell you all her stories’ . I lost my dad 16 years ago and it certainly doesn’t look like mum will be around to tell any stories, not that I expect nor want her to bury her children, but I’d hoped she might tell a story at my 50th next year. And with that chorus my contentment was gone and reality was back. I so don’t want my mum to die.