Tuesday, September 18, 2012

One year

Its been a year today since we lost Shanean.  The intensity and frantic pace of looking after someone when they were so sick instantly goes away and then there is little left to do but shake your head and wonder how this could have happened. 

The kids are doing fine - from a practical perspective anyway - but no matter how much you are told of children's resilience and that "they will be fine" - they lost their mother and that will be something that is missing for the rest of their lives.  Shanean spoke of the "label" that they will wear forever and I now know what she meant.  Celeste still cries for her mummy to this day and Joel still asks to go to the hospital to visit mummy, but the frequency and intensity is less so as it becomes part of their life and who they are

Celeste started school this year, Joel is finally out of nappies (but still doesnt eat anything), they are learning to swim and Celeste has broken all the rules of the Salter genetic code and come second place at her school athletics carnival.  The little things where you dont feel sorry for yourself for their mummy not being here - you just feel sorry for mummy for not being there

The sad, traumatic memories eventually give way to happy memories and routine kicks in and life goes on.  The panic of the thought of raising a teenage girl as a single daddy and wondering if the kids will run off the rails gives way to learning how to braid hair, ironing school uniforms and going to mothers day morning teas at school. 

At the end of the day, these anniversaries are just another day.  The one year today is the same as her birthday, the kids birthdays, my birthday, mothers day, fathers day and every other day.  We miss Shanean every day, we miss mummy every day and so do all the friends and family around the world.  There has to soon be a connection made by science to discover why is it all the beautiful, strong, caring, brave, considerate, positive, calm and just lovely people have to die so young

So on this day, as me and the kids sit in Shanean's house where she grew up in South Africa, awake since 4.00am from jetlag surrounded by her family that are the reason why she was the person she was, we will raise a beer, apple juice and bottle and toast our mummy. 

And knowing this household there will be muuuch more than one toast to mummy today

Nee, I am just trying to make you proud everyday, I will only do half as good a job as you, but its a million times better than I would have been able to do without your mentoring.  So thankyou

Monday, September 26, 2011

Zanzibar

Next sunday the 2nd of october will be an evening in honour of shanean at the zanzibar hotel in newtown, sydney (king street). From 300pm

Its not a funeral or memorial service but a gathering for all those who loved her to reminice, drink, dance and talk of good times we shared with her

Kids are welcome, no rsvp required - just see you there if you are there

Thanks
Shayne

Sunday, September 18, 2011

Love you forever Nee

Today at 2.00pm Shanean left us, no more pain, medicine, hospitals.

As she asked she was in her bed, surrounded by her loved ones, the loved ones that were fortunate and priveledged enough to be there with her.

Her strength, bravery, courage and pragmatism cannot be expressed in words. She chose her time, everything was in order. Now her spirit is free.

I cannot thank enough the support, well wishes and encouragement from the countless people who had the fortune in life to be touched by her, you all know just how unique and special she was.

Nee from me, all I can say is thankyou for everything and I love you.

Thursday, September 15, 2011

Its been five weeks since we got the awful news about shanean. Since then shanean has had some great times - at some times feeling better and than the whole last 2 years and included a visit from all her family from south africa

Part of the weekly routine she was on included daily radiation therapy for 2 weeks and a weekly checkup at the hospital

Yesterday we went to the hospital for this weeks checkup'. For the 2 days prior Shanean was very tired and ended up sleeping around 20 hours per day

The news they gave us wasnt pleasant - the sleepiness is being caused by the disease moving into her blood and there is little more they can do - she doesnt have to go back to the hospital and most of her medications have stopped

Now its quiet home time with shanean her mum, sister, myself and the kids. Shanean has asked that the house remains calm with just us for now. Whilst this means no more visitors or phone calls, if you would like to send Shanean a message you can do so on the blog or email or sms. She may not reply but she will get it even if we read it out to her

Thanks again to everyone

Sunday, August 14, 2011

Home Time

We got Shanean home from the hospital at around 5.00pm on Friday. She has a bag attached to her with constant morphine going in to her to ease the pain, she also has backup supply to add manually should it get a bit too much

On the way out we said goodbye to the nurses who all know her so well over the last 2 years, a few tears from some of them - proves that Shanean tends to steal the hearts of most people she meets

The palliative care nurses come to our house each day to check up on her and sort out her pain relief. She can stay put at home until the radiation on Tuesday

Yesterday we had a bbq and danced with the kids (lots of cuddles for them at the moment), read them a story for bed - just a normal day

Im glad this blog has been useful for so many, it has been very therapuetic for me as well so its a bit of a win-win. I wish i could sign off with good news for all. This is an awful disease, but Shanean knows she has the collective love, support and well wishes of her family, friends, me and, of course, Celeste and Joel

She is very active online - is all set up in bed with a laptop and internet. If you send her a note she will get it


This photo was taken a couple of weeks before she was diagnosed. The look of absolute love she gives to the kids in it is forever and this is my favourite photo

Friday, August 12, 2011

10 years

Yesterday was mine and shanean's 10 year wedding anniversary. Happy anniverary nee. I love you

Yesterday Shanean went for a scan. About a week ago she had a niggling pain and by yesterday it had deteriorated to the point of needing morphine pain relief. The professor then quickly arranged for a scan

This is what we were told -

The cancer is still growing rapidly and aggressively. The professor says he has never seen anything quite like it and that from an aim to cure perspective, there are now no more treatment options left. She has been transferred to palliative care where the goal is to treat her terrible pain and make her comfortable. She has some radiation scheduled next week to try and reduce the tumours - it is just for an hour each morning and she wont have to be admitted

She had to stay in hospital last night so they could work out her pain treatment regimen, but we are aiming to bring her home today where she can be with the kids


Saturday, August 6, 2011

so far

2 weeks out of hospital today (and one month after transplant) - after being very sick for the first couple of days Shanean came good. She was up and about nearly to normal, still gets tired and weak but is eating well and enjoying time with the kids. Today we went to the park and then to the pub for lunch. She has cravings for sushi, fruit salad and grapefruit juice - shame about the grapefruit juice as she is prohibited from having this due to some sort of reaction with the drugs she is taking
She goes for checkups at the hospital every Thursday, they are very pleased with her progress so far - no signs of GVHD yet and all the blood counts and functions are normal
It will just be a monitoring process now for the forseeable future - there is no more treatment pending, she just has to take her many pills each day - steriods and immunosupressants amongst others.
They havent mentioned when the next scan is, and we are not that keen to ask - trying to enjoy a little bit of normality whilst we can. We may get more info at the next checkup on Thursday