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.
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.
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.
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 !!
I 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.
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!!!!!!
My mum asked me to drive her to a Drs appointment to have a lump cut off the top of leg, almost on her butt really. The appointment was on the 15th of September. Didn’t think much of it, ducked off out of work for an hour and all was good. The next week, 22nd Sep, we went back to have the stitches out. I was just going to drop her off but I had a feeling that I should find a park and join her. The surgeon came out to greet her and asked ‘Is this your daughter?’ Mum answered that I was. He then asked if she’d like me to join them and she said no. Mum is an incredibly private person and wouldn’t want me in a room where her pants might be on display while she got her stitches out!! The surgeon almost shut the door then clearly had a change of heart , reopening it and saying very definitely ‘ actially I’m inviting you in’. My anxiety levels began to rise then.
In a nutshell, he told us mum had an aggressive malignant melanoma, already 33mm deep. He explained a depth greater than 4mm had a very poor prognosis!!! I swallowed my vomit and clutched mum’s hand. She remained expressionless. This woman with fair skin, who had never sun baked a day in her life and certainly wouldn’t have had her bum on display if she had, had a deadly disease usually associated with the sun.
We were told CT, PET and MRI scans would all be needed and surgery was booked for the 30th, when the rest of the tumour would be removed and lymph nodes sampled.
I needed my lighthouse.