So 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….
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.
I love to talk, and to sing along with the radio and to laugh out loud. I love banter with my colleagues and family and deep reflective conversations too. But I’ve been muted!! I’ve come down with laryngitis and it’s driving me insane! I literally have nothing, not even a croak!! Suddenly I realised how often I use my voice, to remind the dog to get off the furniture or to stop barking insanely, to call the chickens home, to yell for help when there’s a huntsman spider on the wall, to let the family know dinner’s ready, to laugh out loud at a TV show, to order take away on the ‘phone, to thank someone for their customer service or to ask for assistance in a shop, to greet an old friend and show the joy I’m feeling at seeing them again, to tell my husband I love him, my daughter I miss her and my son to travel home safely to me. Take care of your vocal cords- it’s a lonely place while they’re on the blink!
After fairly hopeful news from the oncologist we went to what we were sure was the last appointment with the surgeon who removed mum’s melanoma. What a downer!! Firstly the registrar had no idea what was going on with the oncologist and asked inane questions about whether or not mum was going to have chemo, a decision we will be making next week with the oncologist. Then the surgeon comes in, clearly so underprepared and garbling: saying the exact opposite to the oncologist ” I feel so sorry for you, so much uncertainty, chemo doesn’t work for melanoma, you could be dead in few months, no point making any plans really blah blah blah” Mum was devastated and I was furious. Bloody clownl!
Had a bit of a check up last week, and left with a referral for an ultrasound of my kidneys, bladder and gall bladder plus a bowel test kit!! Mind you Dad died of kidney cancer and with Mum’s recent diagnosis I’m happy to have every screening procedure out there! Reminds me of what a lucky country Australia is though, none of this cost me a cent and so far none of Mum’s stuff has either – and she has another CT this week and an MRI next week. I wish someone had been just checking her skin a bit earlier though- could have saved a lot of procedures, a lot of angst and a lot of Mum.
The thing about cancer and all its trimmings is the lack of control- little or no control over appointment times, availability of treatment, rollercoaster emotions, the reactions of others etc.The thing about work is the exact opposite- so much control. I am a primary school principal and returned to my fabulous school today after some long service leave. My leadership style is very inclusive however I did relish in my ability to make decisions today, to have so many easy to solve problems and to be able to make people happy. Work- the polar opposite of dealing with cancer!
What a great day!! Finally some real hope from experts! Mum and I met with a specialist melanoma oncologist who feels confident that there is treatment for her tumours! Blood test to find out if it will respond to oral BRAF or else excellent odds with IV chemo. Dancing, singing, hopeful & happy !!
We’re home. It was 6•c when we landed last night, it’s about 12•c now! Certainly appreciating the 8 days we had of perfect sunny days with temperatures of 30+ .The dogs were wrapt to see us, our son was out and our daughter won’t be home until next weekend, but we’re here and happy. I love Port Douglas . We booked next years trip before we left but of course we don’t know with an certainty what this coming year holds and wether we’ll be able to go. But it’s good to have something positive booked to look forward to. So for now it’s back to it- gym, groceries, washing and catching up with mum. No matter the weather life goes on😄
It’s back- that anxious feeling in the pit of my stomach, that subtle gnawing that says things are not ok. I managed the initial guilt of me on holidays while cancer gallops merrily across my mum’s body. I calmed myself when my son rang with the fabulous news of his upcoming interview for the uni of his choice, though I was thinking ‘ how can you contemplate moving away when your grandmother is dying?’ I have justified every happy moment up here as ‘gathering my strength for what’s to come’ I woke from cruel dreams of mum looking fabulous while explaining to me how her end will come, not with a bang but a long drawn out whimper. And when I call her today I know she’ll say she’s fine and want only to hear news of my holiday. But I’ve got a feeling there’s a lot more she needs to say
We made it! My husband and I are in fabulous Port Douglas. This holiday had been booked for months but I really didn’t think we’d get here because of mum. But she’s doing ok and was happy for us to go. So here we are with an average daily temperature of 30 degrees Celsius , a beautiful pool, so many choices of bars, restaurants and cafes and each other. 8 days in a tropical lighthouse.