Long Overdue Update

Long overdue blog update. I have been writing bits and pieces as I think of it but it’s so frustrating that everytime I want to spend an hour or so writing an update I can’t keep my eyes open or I am being visited by nurses, physios, doctors etc.

In the last 2 or 3 months, I just kept on finding out more and more depressing details about the cancer spreading. I think this is different to other times that I’ve fronted up with tumours growing. New appearance of lesions have appeared in major organs – liver, bones and even a 9mm tumour in my brain. They say we can’t stop it, but just try to slow it down. That’s not new but I am trying to be realistic about the possibility that it may be the last leg of the journey. Of course I’m also still doing my utmost to get better. We have all done lots of crying.The oncologists say I’m not well enough to have more chemo at this stage.

Well, all this gives you a bit of an idea of how bad things have got, unfortunately. Big changes in the last few weeks. I’m astonished and disbelieving that the decline happened so quickly, taking about 2 or 3 months. Here are some updates, thoughts and feelings as they have come to me since my last update. And thank you to everyone for the well wishes and kind thoughts and messages.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
August
The doctor and the professor dabbed at their eyes. Both struggled to hold back tears after I said “I don’t feel like I’m dying but then I suppose I haven’t done it before”.

My tears only came when I hugged my beautiful oncologist, and said goodbye and thanks for all the care year after year. Goodbyes have been tearful for me since about 1988, which is maybe when I grew up.

Multipath mutations
A shame they couldn’t get a biopsy of my tumour tissue ar my recurrance after rucaparib because research is showing how resistance develops – PARP repair pathway redeveloping.
Also more information is available about ovca mutation diversity, suggesting there may be several different mutations involved in one patient’s recurrence!

When I am in a space where I am so dependent
Turning over in bed takes some strategy, consideration, planning, courage – will I lose the heat pack with the manoeuvre & if I don’t will it still be hot enough to relieve the pain when I get in the new position, or should I reheat it first before moving?

Went downstairs
for long enough to enter rooms I hadn’t seen for how long? Find lost (misplaced = relocated ) things  Left & right like folkdancing days –

On a shelf, at the front – the yellow one.
No not that one, it’s – oh nevermind. Thankyou
I use that for
I always keep that one for
The one I wanted is blue
I can’t remember where I put it. Can you bring me a photo of the contents.
I meant the white one
I like it done this way
I always keep it in that spot but I don’t know where it might be now
Clothes to fit that I’d forgotten
Looking
Rooms cupboards I haven’t seen for months
Tears frustration
But also I don’t want this moment to stop
Knowing I’ll turn into a pumpkin in a few hours – that’s the nature of my days. Great evenings then horrible pain when I wake in the morning.
Maybe I can’t but at least I can dream

One day I’d like to post what it has cost us with public health if I can find receipts.

October
Tues 9/10/18
So much has happened and I’m in hospital again (yes again!), although this time it wasn’t via emergency. I had a planned admission on Wed 3rd Oct for a little-known procedure to drain some lymph fluid. Wide needles (like knitting needles) are inserted shallowly into my legs. Attached to the needles are tubes with collection bags. There are many unanswered questions about doing this, but a general agreement that the best site is in the shins. I’ve been complaining so much about my tight swollen thighs and pelvis, the occupational therapist decided to try one needle in a thigh. It seemed to work instantly but very soon the needle fell out. All of the needles have fallen out now except one. Lymph fluid is caustic and can burn the skin. My extreme case of lymphoedema leads to a continuous trickle of fluid from all the needle holes. We are collecting this fluid in stoma bags that have a tap at the bottom. The opening has been cut to size in order to minimise contact of the caustic fluid with my skin. Even after a week of draining this way, the needle holes haven’t healed up and the output is impressive.

Fri 12/10/18
The last 10 days has been rather hectic for me. I’m still staying in hospital, & now today I just keep falling asleep. I’m on a higher dose of painkillers and I don’t know why I haven’t adjusted to them yet. I need the pain relief but it’s frustrating to be so out-of-it all the time! I haven’t opened my laptop for days, nor looked at Facebook for over 2 weeks. So that leaves all of you wondering about me and sending many kind messages that I wish I could answer.

Has the lymph draining procedure made a difference to my discomfort? I think so – everyone comments on how much my legs have decreased in volume. But sadly I still have a lot of pressure on my chest, abdomen and pelvis, making eating and breathing difficult.

16/10/18
Today was a terrible day when I couldn’t even manage to talk with members of my close family because I was nauseous, in so much pain, and so drowsy. Hoping for better days.

Believe it or not, at 11:15  pm when I buzzed for a nurse I learned that they don’t have any Abstral leftovers in stock. My nurse for the night is one of the very smart and beautiful Amys. Handover is happening now & she spotted the missing pills.

17/10/18
Sometimes I can’t talk cos my mouth is too dry and my teeth stick to my lips.

18/10/18
Not that I want to catch them out or show them up, not at all, but it seems to me there have been some serious near accidents eg continuing hydromorph after too deep sleep, altered doses & drugs that didn’t make it through to the administering nurses, etc. From my viewpoint I wonder if it’s hard for those communications to be handed over.

24/10/18
After almost 3 weeks in the wonderful care of the Mater nurses I have been transferred to the Prince Charles Hospital Palliative care. I have a unit to myself with a view of trees and a hill in the distance.

25/10/18
It’s been an adjustment to ‘bed-centred’ care. The new team here are kind and smart.

27/10/18
My Mum is here and beautiful friends from interstate and FNQ have been visiting.

Mother
Life is precious and a mother is a treasure. My Mum is a joy in my life, not only because she is kind and inspiring, funny, clever, beautiful, and full of entertaining tricks, but also because she has a life of her own, friends and projects and a full calendar.
I felt emotional at Mum’s 90th birthday celebration. In about 2011 I stopped looking as far forward as Mum’s 90th, and I just concentrated on enjoying each day. So I was thrilled to be there for the party in May, and really happy to celebrate a leading light in my life.

28/10/18
This afternoon I was visited by the Brisbane Threshold Choir. Www.thresholdchoir.org

Every time something happens and I need more treatment there come the big questions – is this the last leg of the journey?
Oh, don’t stop me with your protests of ‘keep fighting the battle blah blah…” Sure I’m going to keep enjoying this beautiful thing called life as long as I can. Then when my time is up, I’m going to tackle the next adventure to the best of my ability.
I’m sorry death is taboo. I believe it should be on our agendas for discussion from time to time. It’s on everyone’s to-do list (the last thing). No one’s going to get out of it.

Music therapy and art therapy at the Mater Cancer Care Centre
I’ve been very grateful for the chance to join in the music therapy and art therapy offered by the Mater Cancer Care Centre. Creative expression helps to deal with issues, and it really distracted me from the unpleasantness of the treatment. Given a chance for therapy, I decided to explore an issue over which I have conflicted emotions. I’ve discovered I’m not alone in finding this topic to be a bit of a minefield. Here is a link to a video of my song ‘Miracle Cure’ which I  performed in March in the “Last Note” concert to mark the end of the Mater Music Therapy Programme. (Remember this is therapy – It’s not the last word on the topic).
https://m.youtube.com/watch?v=nrWgAbrzuJM
Thankyou to Kylie Ferris and the Mater Cancer Care Centre Art & Music Therapy Programmes, 2010-2018, Funded by Mater Foundation and Dry July

Dying at home
Dying at home has a huge impact on the family. It can be traumatic, exhausting and messy. Therefore I don’t mind where it happens. If it seems better for me to go to a hospital or some other place, that’s fine by me. Then maybe I will have more relaxed visits and the family can get some sleep. I’m happy for the family to decide, because in the end they have to live with the consequences (not me). It’s important to me that they get over it and can have a good life afterwards.

To everything (turn, turn, turn)
There is a season (turn, turn, turn)
And a time for every purpose, under heaven

A time to be born, a time to die
A time to plant, a time to reap
A time to kill, a time to heal
A time to laugh, a time to weep

To everything (turn, turn, turn)
There is a season (turn, turn, turn)
And a time for every purpose, under heaven

A time to build up, a time to break down
A time to dance, a time to mourn
A time to cast away stones, a time to gather stones together

To everything (turn, turn, turn)
There is a season (turn, turn, turn)
And a time for every purpose, under heaven

A time of love, a time of hate
A time of war, a time of peace
A time you may embrace, a time to refrain from embracing

To everything (turn, turn, turn)
There is a season (turn, turn, turn)
And a time for every purpose, under heaven

A time to gain, a time to lose
A time to rend, a time to sew
A time to love, a time to hate
A time for peace, I swear it’s not too late

Pete Seeger

from Ecclesiastes

11 thoughts on “Long Overdue Update”

  1. Dear Ali. Thank you for sharing your journey with everyone. You have always be an inspiration to me and many people who know you. You have always stayed positive despite all that you have endured. As you enter the final stages of this battle, may angels surround you and may God always hold you in the palm of his hands, Much love and respect. xxxxxx

  2. Dearest Alison.
    It was so nice to be able to visit you recently, so lovely to see you again and catch up a bit.
    I don’t know if you know, but I have considered you a bit like a mum to me over here in Oz….. I treasure our connection and memories of moments we’ve had together dearly… And I know that connection will last forever in spirit! You are one of the best things that have happened to me in Australia. I thank you for that!
    Lots of hugs and eternal love,
    Storm xoxo

  3. Dear Alison,

    You know I’m not comfortable with writing personal comments on blogs, even though it’s only people who love you and whose lives you have enriched who leave messages on this one. I agree that we should talk more openly about death. It can only make us less fearful. It hasn’t always been a taboo subject; the Victorians, for instance, were mad keen on it. Nowadays the idea of a ‘good death’ is brought up for public discussion from time to time, which is encouraging. Maybe it’s your scientific training, or maybe it’s just your staunch nature, but the way you have written unflinchingly about your ordeal has deeply moved me. Everyone who loves you will be grateful for your courage and honesty.

    I have a memory of you that is more than fifty years old. You were playing with my sister — half-cooked sausages! — and for some reason I was with you both. Do you remember the convent that was on the corner of Dominic St and whatever that street was that led to the water? We were on the verge outside it, and you were up a small tree, reaching for something. A cicada? I don’t know why you were climbing the tree in your school uniform, but the reason I have kept that memory to the exclusion of others must be that it’s a metaphor for you and your life.

    All my love, my dear friend,

    Diana xxxxxxxx

  4. Dear Alison. Thank you for sharing everything so openly & honestly with us, and over a long time. It has been informative (something we all need to know) and so helpful in many ways. I really appreciate having known you; it has always been delightful & impressive. You have given generously to your community, and as you know, Tablelands LETS continues with strength & innovation. A great gift initiated by you. We will miss you when your time comes, but we bless you as you go. With our love,
    Louisa

  5. We have been friends since we were teenagers and whenever the end comes our friendship is one I will treasure forever. You are sadly right when you say death is a difficult subject to discuss – although it could be a blessed release, it can also be a deep loss and I will miss your presence greatly.

    I started doing some creative writing recently and this little haiku seems apt:

    CHANGING OF SEASONS

    SPRING
    The blossom is out
    Daffodils dancing in the wind
    Sunbeams through tree branches.

    SUMMER
    Time for outdoors
    Walks, barbecue’s, sun
    All too soon its gone.

    AUTUMN
    Walking through leaves
    Sense of cold to come
    New start, or year end.

    WINTER
    Cold, bleak, frozen fingers
    Sun glittering on snow
    When will it be done.

    Big hugs for the future my dear friend and thank you. xx

  6. Hi Alison! Thank you so much for sharing so honestly with us about your whole journey, including the last leg. I love how you can see that choosing the place for your dying is up to your family. I feel incredibly fortunate to have been with my father when he died at home when I was 19, and again to be one of the carers for my beautiful sister-in-law when she died at home. It worked for us in both cases because we had a good team, with enough people that we could all get plenty of rest but also excellent medical help and a fabulous palliative care bed for Betty that made it so much easier to move about and get her comfortable. I remember doctor Connolly saying that it was really up to ‘the team’ to decide what they could cope with, and we had to promise Betty fervently that we’d move her to hospital if it became too much for us. That’s what we ended up doing for John’s mum, who had a few days at home but then felt a lot happier to be in hospital. In my experience, life goes on right to the end, and as you say, dying is something that we all have to experience so it’s a good idea to get over the taboo and talk about it! I wish for you and your family that it may be may as good as it can be, and that you will all continue to learn and grow and to love even more deeply.

    My life is very full and amazing at the moment. My 99 year old grandpa is on his final leg: now only days or hours away from dying. I chose not to go down to Sydney this time although I’ve been down four times in the past year including just a month ago when my sister and I had a brilliant happy time with him. I did a big cry on Monday which really came as a shock since logically it makes sense that he’s had a wonderful, healthy, rich life and that I wouldn’t want him to hang on when his poor body has had enough but it did just hit me how much I love him and will miss him, and all this is perfectly normal. I will miss you too Alison! And have shed a lot of tears reading your posts over the years, as they are beautiful and brave and honest and insightful.

    Ironically, the past few weeks I have also been helping a young suicidal friend, only 19, come through a difficult and dangerous place and it’s been an amazing journey to see her find joy in the world again and to imagine a future. I read her different bits of your post, and she comforted me when I cried about grandpa. Life is so beautiful and strange. What s blessing to have had you in my life Alison! Best wishes for the last precious moments! Lots of love Jodie

    >

  7. I’ve said it before and I’ll say it again. You’re my hero. I only wish I could have half of your determination and courage. Xxxx

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