Glass half full

image

We are waiting to see if mum can have some immunotherapy to slow down the progression of her disease. With only 10 weeks between PET scans the tumours have increased in her thigh, lymph node, liver and lungs. She seems more tired and her leg pain has increased. When the doctor examined her, despite claiming she has no pain or symptoms, she winced when he palpated her liver. The lymph node tumour can now be felt. The one on her lung is making her breatheless but she will admit to none of this. The treatment being considered cannot cure herĀ but may buy her some more time, but it’s not an option if her blood tests show that her liver and/or kidney function is not good enough. It seems she probably has between 4 and 6 months left without any treatmentšŸ˜¢ Mum wants us to help her decide if she should have the treatment, to weigh up side effects and “down time” against possibly gaining a few months. Big decison, and we may not even get to make it if her liver and kidneys aren’t ok. I guess I need to get my optimism back on and do some cup half full thInking- I’ve still got my mum for now, she’s still enjoying life, we might be able to keep her for a bit longer and it’s only 2 sleeps until we find out if she’s a candidate for the therapy.

Making Memories.

reel

Been quite awhile since I had a cathartic write. A lot has gone on, but at the same time nothing has gone on. Mum doesn’t know that all of us kids and grand kids know she’s got a ‘use by’, having said that , one grand kid doesn’t actually know- her mum took her interstate years ago and she’s had no contact with her dad ( my little brother) she’s let me follow her on instagram so at least i have a way of contacting her if/when it’s necessary.

Christmas Day was 8/9 parts great. My 2 brothers, little sister and her husband along with mum came for a late lunch and dinner. We feasted and drank too much; well, again, 8/9 of us drank too much. My big brother insisted on driving, refused to relax, looks awful in the family photos and abused me for taking photos with my new selfie stick!! Apart from that, if that was mum’s last Christmas, as we’ve been told, it was a pretty good one. I really got on well with my little brother, which is such a gift as we’ve never been very close. Mum is trying hard to make sure I’ve forgiven my big brother as she’s clearly worried about him after she goes. He’s a total dick but I’ll never leave him alone at Christmas.

It’s funny in a way, but her biggest cause of pain and discomfort is her arthritic knee, not her metastatic cancer! We’ve been out for lunch since Christmas, had her down for lunch and a movie and lots of ‘phone calls. She’s keeping up a very brave front and is a great role model for us all.

My little sister struggles with it all as she lives away and can’t maintain the very easy contact that the other 3 of us can. She’ll be ok though, because like me, she is her mother’s daughter and we cope, as my daughter will too as she inherits our strong genes.

I’m struggling with my son also moving interstate in a couple of weeks. Have you seen the movie “Boyhood’? That really struck a cord with me, at the end when the son moved out. I’m really going to miss the afternoon coffee meets he, mum and I have during the working week.

Her next oncology appointment is 22nd January and I’ll be interstate helping my son move, so I’ve asked her if she’d like to change it or if she’s happy with my med student daughter taking her- she’s thinking on it.

For the meantime, I’m on summer holidays and have lots of time to make memories with my mum.

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

lighthouse

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.

Just Checking

image

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!! Ā  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.

A moment’s calm…..

imageThis 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 heršŸ’. 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!!!!!!

Actually, I’m inviting you in

imageMy 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.

 

 

Josh Pike

imageI 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.