My son has started to blog on here and after reading his first post and re-reading mine I am reminded about how much I too love to write, just like him. What an amazing young man my Matt is, he epitomises seize the day and if there was only one legacy I could leave my children then that would be it. I spent some months on the ledge of despair waiting for him to reclaim his joy in his successes instead of drugs, and he did! I have the utmost faith that he will be all he needs to be. I take great joy in the fact that he and all my children still seem to enjoy spending time with us.
Abby is an intern and really enjoying life again,she looks fabulous, works conscientiously and has a solid handle on work/life balance in so much as she has control over this. How many mothers get to have scrubs in their washing? Time spent with her continues to be time spent so well.
Our eldest, Trent and his wife are expecting a baby girl in October. We are about to re-invent as Grandad and Grancath. How exciting.
So mum is still so wonderfully still with us, hallelujah for her ‘accepting’ her doctor of indian descent after getting past her initial ‘ I can’t understand a word he’s saying’ He talked her into her treatment and here she still is!
And so the beat goes on- life keeps happening to us and aren’t we all lucky that it does? Far better than the alternative!!
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.
Last night I felt like I was being dragged backwards by a massive wave, all of my energy being used to try and return to the shore, nothing left to even allow me to tread water for awhile until things calmed. My daughter has been home for 7 weeks and returns to Med School on Sunday, a two hour drive away. I’ll miss her so much. My son is so excited about his imminent departure to Melbourne to attend Swinburne University and study a Bachelor of Film and Television. God I’ll miss him too!! The house will feel empty and quiet without them both. I know they’re doing the right thing, in fact amazing things and I’m so proud of them both, but at this time I just like to draw my loved ones close. Next week Mum has an oncology appointment, it’s my first week back at school, luckily I can take a couple of hours off. But I’m dreading it…. what good news can they possibly have for us after the last lot? She still looks ok but I can see her getting thinner. She’s syphoning off cash to my daughter each time she sees her and I’m not sure that she has enough to be doing that. She hugged my daughter so hard yesterday as our weekly lunches have come to an end for now. My best friend is a nurse and over lunch she talked about the ‘awful death’ that liver tumours bring; not the cheeriest of lunch time conversations! The fact that mum’s palliative plays on my mind, the knowledge always lurking in the shadows, a trouble making imp ready to give it’s opinion at any moment: Mum comments on a new highway being built and the imp whispers to me ” she’ll never see it finished will she?” My daughter looks at graduation gowns and the imp is right there saying mischievously ” her grandmother isn’t going to see her in that” My son talks about his 21st and the high pitched voice quips “his nan wont be at that will she?” I need to find a way to quiet the imp!!
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.
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 !!
This is not in chronological order from the last entry but today was a roller coaster. My little sister flew in to join us today to get the results of Monday’s PET scan. Again my digestive system let me down and I felt positively nauseous from the moment I woke up. We made small talk over coffee and during our time in the waiting room. My sister and I played ‘ Perfect Match’ where we looked at couples and decided if they were made for each other or not. Mum was clearly nervous, quite quiet and at times short with us. After a 70 minute wait mum’s name was called. I was a bit wobbly on my feet but pulled myself together and followed the Dr in. Surpringly we were all relieved to hear that there were mets in mum’s lung and liver- we’d all been expecting an even further spread. Our mood was much lighter than last week when we’d learned there were satellite tumours around the original site and a met in a lymph gland. We were all really down after that. So Gerry, our doctor said she’d do a referral to an oncologist- we requested Rosie who has an outstanding reputation with melanoma. Gerry explained surgery was unlikely but we all chose to ignore the implications of that statement and left feeling ok. Mum chose our lunch venue and all was well. We spent the afternoon in my backyard before heading to the airport for Belinda’s flight home. Mum was happy- if dad was still alive today it would have been their 54th wedding anniversary: mum believed dad was watching over her and had even made a tree flower a month early for her💐. I came home happy, feeling like we had a reprieve for awhile anyway. Then I spoke to my med student daughter, she seemed down and wasn’t sharing my joy. I did a bit of research and discovered just how shit today’s news actually was: 4-12 months is the prognosis. FAAAAAARRRRRRKKKKK!!!!!!
I love The Lighthouse Song by Josh Pike- it’s become a bit of a code between my husband and I. I’ve suffered from depression & anxiety in the past, and still battle anxiety. When something comes at me that triggers my anxiety I often text him simply ‘ I want to move to a lighthouse. This lets him know that I’m struggling, and the truth is, he is my lighthouse, every time.