The long and winding road

image

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.

Advertisements

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 her 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 treatment😢 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.

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.