How can it be the last day of March already? How can more than 4 weeks have gone since Scott passed away? How can a month so normally filled with birthday joy ; at both the start of the month and at the end have become a month filled with such different anniversaries?
A month that started off so hot and up until last few days continued in that vane, with desperate longing for cooler weather and jumpers and socks ...careful what you wish for Mhags ....fingers are cold typing this first thing this morning, enveloped in a jumper and a blanket!
A month of sadness but also insurmountable amounts of kindness and love and hope. Of messages, emails and cards with the kindest of words written in them. Of flowers and more flowers and I will never buy a lily ever again.
A month of meeting new people, of being in unfamiliar places but through kindness these places became familiar.
A month of trying to find the way to say what's happened. I was told, whilst still in hospital, I would develop a stock phrase , a way of letting people know that Scott had died...a month on and I'm still working on that one. It doesn't sound right when I say it. People get flustered . I kindly tell them it's okay whilst thinking it's not really. Sometimes I say it first , so it's said . Yesterday I was asked 'how's your husband darl?' In the post office. I just wanted stamps. I just wanted to post a letter. I'd already had this conversation last week with her colleague , who had told me she was going to cry. I'd assumed she would now know. She didn't. I then had to tell her. It threw me.
Scott's Death Certificate arrived in the post this week ( it's a very different system here) I wasn't expecting it so soon. Had thought it would be mid April. However, it comes in an envelope in an envelope with a request to read the back first. This advises you that the Death Certificate is enclosed
and that you may want to have a family member, a friend or your doctor with you. Even though I
know Scott has gone...I was there! Even though we've had 2 funerals to celebrate his life . Even though we have had his ashes returned home to us . It was still difficult to read that certificate . The piece of paper that proves a point.
The mountainous pile of paperwork on my desk could now be tackled. It was all waiting on that one piece of paper. The stamps bought 2 weeks ago from the lady who wanted to cry. Envelopes addressed and stamped and air mail stickered. My poor solicitor ( is there such a thing?) yesterday had to certify 36 pieces of documentation that prove who I am, our children are, that we were married and that Scott has died....and a random one that I can drive! He very kindly did this with no charge.
The kindness of people who have cooked us food. My freezer has never been so full of plastic tubs. Filled with tasty , home cooked meals , made with love and kindness and thoughtfulness.
My mantlepiece has been filled with cards filled with kind words and love . We have appreciated
each one.
We have donated our toys and games to our Palliative Care ward. Walking back through those doors last week was so very, very hard. Holding those nurses in my arms and whispering thank you so much for looking after Scott was so very, very hard. Returning to a place that had been so familiar and as 'home' for our last 2 weeks together was so difficult. Returning there whilst knowing why you had left. Yet, going back was the right thing for us to do regardless of how difficult . I know how proud Scott would be of his family doing this.
We have donated money to our exact choice of location . To help in research for Head and Neck cancer. I am so pleased that we have been allowed to specify where it went. I've had lovely emails from our oncologist. He does this day in day out. He faces real people, real families . He tells them honestly yet kindly that they don't have long. He told us months ago , October, when I said we were trying to make the most of the time we had left, " you're not trying....you are doing it."
I read my journals. I read back to where we were told we didn't have terribly long left ( January 11th)
and I've written 'we must make the most of the time we have left' I read this now and just sob. There is a finality to death that you don't actually realise until it's happened. You don't get another chance. You don't get to say the things you should have said. Should have found out. It's too late .
We did live, we did love and we certainly laughed. We still live, we still love and we still certainly laugh but we now also miss... a husband , a father. The most amazing man.
Thursday, 30 March 2017
Sunday, 19 March 2017
Copability
'How are you coping?' asked someone last week.
Well apart from not answering that rather silly question I thought I would address the situation of coping. Almost 5 years ago on the 5th April 2012 our family was given the most devastating news that Scott had been diagnosed with cancer and that evening we found out it wasn't just any old cancer, it was staged as T4, as bad as it gets with a few malignant lymph nodes thrown in too. We had now entered our new world of hospitals. Of scans. Of appointments. Of fear. Of surgery. Of recovery. Of honesty. Of readjusting constantly to a new sense of normality with each stage . Of trying constantly to offset other people's reactions as we could ( and still can) only cope with our own. Three years later we celebrated our three years with a fabulous day at the beach with our dog , who was still a big pup, we laughed as he ran into the sea chasing seagulls and then realised he had to swim! We hugged tightly as we watched the sun set on the red sandstone cliffs making them glow. We were emotional as we spoke of our love for each other, for our children. One week later Scott woke me up to tell me he'd found a new lesion in his mouth. We both looked into each other's eyes and just knew what this meant. Neither of us slept, we lay holding hands and hugged all night. We saw our team at Royal Melbourne the next day. It was a hot, busy clinic, there were no seats and we waited an hour to be seen. Diagnosis confirmed quickly that yes it was cancer again , different place but still T4, the worst staging and with lymph node involvement.
We were quickly thrown back into the familiarity of hospital. We had to attend early morning MDT meetings ( Multi Disciplinary Team) when over 40 specialists and their teams crowded around us , poked and prodded , took photographs, hummed and hawed. At this meeting one of the most senior doctors ( and I still give him an angry stare if I see him) told us bluntly that if surgery wasn't feasible we were looking at 6 months left. We were both utterly shattered. I was visibly upset and he told me to pull myself together and that my husband needed me to be a rock. If I had had a rock....anyway, I drew myself out of my distress and told him in no uncertain terms that I was more than entitled to be
upset and that I have and always will be at my husband's side. He conceded this and left the room.
Leaving 2 distraught people whilst the MDT went and discussed our case. After the longest ever half
hour wait a junior doctor bounced in and said surgery is booked in for 2 weeks later. We should never have been told what he told us prior to the team meeting.
By this time we have told our children once again that dad has cancer, that dad needs surgery again , that dad will have a tracheostomy tube to allow him to breathe, that dad will have to relearn to walk as they've taken part of his hip to make a new jaw. That dad will have to relearn how to swallow, to talk, to eventually eat and drink and that every latte and easy to eat vanilla slice posted on Facebook was posted as an achievement, not just a ' oh we are out gallivanting in a coffee shop again.' That dad, once again, would need his hair shaved pre op and that he was adamant that it was never getting cutting again until it was the same length as Ruaraidh's. ( not knowing that 15 months later it would come out in handfuls following chemotherapy). Just that dad and all of us were going through all of this all over again.
Following any initial cancer diagnosis comes an underlying element if fear. I don't think that
ever goes. Every lump, bump, pain is treated with suspicion then relief when it's just a big pluke, for one
whole year I was grateful for every single day I got to spend with my husband, my best friend and my love. It felt like every day was an extra day. A day to be grateful for. Life really is for living.
A year later we had had a routine MRI , a procedure we had had to push for, for oncological monitoring. We had not been given results. I had to chase them up. A new to us doctor called me to arrange an appoinment and I knew then that something was wrong. She tried to reassure me it was routine but I just knew. We celebrated our son's 21st birthday with a weekend away in the country, watching kangaroos bounce past our porch, out and about in the Victorian countryside we both loved and with our son off mountain biking through frozen trails.
We were told abruptly by a junior doctor who did not know , he was reading the results of the screen , we were given reassurances that it might be 'nothing ' but I think when a radiologist reports that it looks like a large , invasive tumour that's what it's likely to be. And there it was . What we had feared
the most was actually happening. Cancer number three. We knew it was likely to be inoperable . We
had to come in the next morning to another MDT meeting. Rude doctor and I nodding
acknowledgment to each other. Waving hello to our familiar team as they walked past the room . ( there are other patients there too for similar reasons) each one looking incredulous or saddened that we were back.
We had to fit in scans and biopsies. Scott had a large white dressing covering his face after one biopsy. We were not telling the kids until we knew for definite and spent the journey home making up wild and wilder reasons for dad having a blooming great white pad on his face...we came in , somehow speaking to Fiona and getting past her before she saw...Scott stood at the kitchen door mouthing WTF to me and then went and pulled dressing off then we dropped Isla off at her
Debutante Ball rehearsal , went for pizza and nobody was any the wiser!
He danced with his youngest daughter at her ball, me with a breaking heart that he
would never dance with her at her wedding. We set sail to Tasmania, stayed in our beautiful cottage
by the sea with its pink gate to the beach and waited on a phone call confirming what we knew in our
hearts. That call came as we stood looking out at the calmest of seas then we told our children. We
stood hugging, sobbing then laughing as Haggis realised that nobody was looking and went round and scarfed all the bowls of crisps and snacks we had left unattended.
We had an amazing week on an amazing island and it was just the perfect place for us to be. We headed home the following Wednesday via Royal Melbourne Hospital. We literally came straight off the ferry to there. Left kids and dog at car and were very kindly and gently told that it was now terminal cancer. The word incurable cancer was later used and we both shuddered at this term. We were quickly introduced to our new way of life . We had to tell our children that this time it didn't get
better. There was no recovery period. No rehab program was going to make this better. Surgery was not an option, the tumour was too invasive and too near brain and eye and did not have a good mortality rate and anyway...we can't remove all the cancer. We were told, when I asked , we had about a year. I thought that was a very optimistic year and that I reckoned we had about 9 months. I
was almost right, we had the most amazing 8 months together in which we loved and laughed and
lived every single day.
Knowing that you don't get a happy ending , saying it often enough actually does not prepare you. Being aware that this was happening allows you to plan somethings , like what song you would like at your funeral. It does not make it any bit easier. It does not make me lucky. Watching someone die and watching your children watch their dad die is so very, very hard.
Other people's emotions on their loss of Scott are not ones I can deal with. It is right that they are sad, feeling the need to share with us in great detail is really not necessary. Asking how I'm coping isn't really necessary just now. I'm still managing to brush my teeth, put matching clothes on and my children are still being fed and the dog is walked and of course fed. Haggis whilst very sad and subdued is still getting his priorities in the right order....food, ice blocks and tennis balls.
The morning we picked him up from his sleepover at Dusty's ( our very kind neighbours have been looking after him) he ran straight to our bedroom looking for his daddy. I made him porridge on the morning of Scott's funeral. Up until 3 weeks before he passed away Scott was still eating and drinking and shared his porridge with Haggis, always leaving him a bit. I would always send Haggis through to tell his daddy it was porridge time ( in a loud voice so Scott heard !) and he would run through to our room , let his dad know and then positioned himself under the table. For the first week after coming home he lay under the table waiting on his dad coming through.
I've not decided if it's worse when someone doesn't know what to say or someone just speaks anyway! The following have been said by real life human beings.
"
Oh, so young!; Condolences but it was inevitable ; Oh it's your birthday soon, how difficult ( well no, it's my birthday and I will still celebrate my birthday!) , ....Ooooh where was the cancer?, how ARE you coping , only the good die young; Have you been left financially well provided for? Will
you move back to Kilmarnock?" Someone even wrote to me that his funeral was bloody awful. Not
sure how that's meant to offer comfort. Other people have written blow by blow accounts of their grief, of their upset.
Most people offer beautiful words of kindness and love , some offer practical help, some just turn up and are here for us. Lots of you have offered your help by donating to our Go Fund me page , I will be closing this at the end of this week . We are all truly grateful for every dollar raised, all three thousand , two hundred and four of them. I've been in touch with the ward manager at ONJ and we will be going in this week. We've bought a selection of games and toys for all ages and we hope that other families will know the same , amazing time together that we did. I have been in touch with our lovely oncologist and told him that over $3000 will be coming for his amazing research into Head and Neck cancer, again with our wish as a family that someone is spared the pain and heartache that we are going through .
So , to end by answering the question 'how are you coping?' I'm doing it my way. We are doing it our way as a family together. With Scott still a very real part of us. I will remain optimistic. I will still look for positive things in each day. I write them down daily. They are always there in amongst the sadness I truly do feel. I shall ignore the silly comments and concentrate on the kind and supportive ones. I shall at the every least brush my teeth each day. I am beyond grateful to have known the love of Scott. To see him in his children. To be a better person for having experienced what we have the past 5 years.
I will continue to write and will continue to laugh and smile with fondness and chase a dog who's eating my crocs ( shoes of comfort , not style! ) I will look to the stars and watch sun rises and sunsets . I will just be me doing my best to keep on going with my husband in my heart instead of at my side.
Well apart from not answering that rather silly question I thought I would address the situation of coping. Almost 5 years ago on the 5th April 2012 our family was given the most devastating news that Scott had been diagnosed with cancer and that evening we found out it wasn't just any old cancer, it was staged as T4, as bad as it gets with a few malignant lymph nodes thrown in too. We had now entered our new world of hospitals. Of scans. Of appointments. Of fear. Of surgery. Of recovery. Of honesty. Of readjusting constantly to a new sense of normality with each stage . Of trying constantly to offset other people's reactions as we could ( and still can) only cope with our own. Three years later we celebrated our three years with a fabulous day at the beach with our dog , who was still a big pup, we laughed as he ran into the sea chasing seagulls and then realised he had to swim! We hugged tightly as we watched the sun set on the red sandstone cliffs making them glow. We were emotional as we spoke of our love for each other, for our children. One week later Scott woke me up to tell me he'd found a new lesion in his mouth. We both looked into each other's eyes and just knew what this meant. Neither of us slept, we lay holding hands and hugged all night. We saw our team at Royal Melbourne the next day. It was a hot, busy clinic, there were no seats and we waited an hour to be seen. Diagnosis confirmed quickly that yes it was cancer again , different place but still T4, the worst staging and with lymph node involvement.
We were quickly thrown back into the familiarity of hospital. We had to attend early morning MDT meetings ( Multi Disciplinary Team) when over 40 specialists and their teams crowded around us , poked and prodded , took photographs, hummed and hawed. At this meeting one of the most senior doctors ( and I still give him an angry stare if I see him) told us bluntly that if surgery wasn't feasible we were looking at 6 months left. We were both utterly shattered. I was visibly upset and he told me to pull myself together and that my husband needed me to be a rock. If I had had a rock....anyway, I drew myself out of my distress and told him in no uncertain terms that I was more than entitled to be
upset and that I have and always will be at my husband's side. He conceded this and left the room.
Leaving 2 distraught people whilst the MDT went and discussed our case. After the longest ever half
hour wait a junior doctor bounced in and said surgery is booked in for 2 weeks later. We should never have been told what he told us prior to the team meeting.
By this time we have told our children once again that dad has cancer, that dad needs surgery again , that dad will have a tracheostomy tube to allow him to breathe, that dad will have to relearn to walk as they've taken part of his hip to make a new jaw. That dad will have to relearn how to swallow, to talk, to eventually eat and drink and that every latte and easy to eat vanilla slice posted on Facebook was posted as an achievement, not just a ' oh we are out gallivanting in a coffee shop again.' That dad, once again, would need his hair shaved pre op and that he was adamant that it was never getting cutting again until it was the same length as Ruaraidh's. ( not knowing that 15 months later it would come out in handfuls following chemotherapy). Just that dad and all of us were going through all of this all over again.
Following any initial cancer diagnosis comes an underlying element if fear. I don't think that
ever goes. Every lump, bump, pain is treated with suspicion then relief when it's just a big pluke, for one
whole year I was grateful for every single day I got to spend with my husband, my best friend and my love. It felt like every day was an extra day. A day to be grateful for. Life really is for living.
A year later we had had a routine MRI , a procedure we had had to push for, for oncological monitoring. We had not been given results. I had to chase them up. A new to us doctor called me to arrange an appoinment and I knew then that something was wrong. She tried to reassure me it was routine but I just knew. We celebrated our son's 21st birthday with a weekend away in the country, watching kangaroos bounce past our porch, out and about in the Victorian countryside we both loved and with our son off mountain biking through frozen trails.
We were told abruptly by a junior doctor who did not know , he was reading the results of the screen , we were given reassurances that it might be 'nothing ' but I think when a radiologist reports that it looks like a large , invasive tumour that's what it's likely to be. And there it was . What we had feared
the most was actually happening. Cancer number three. We knew it was likely to be inoperable . We
had to come in the next morning to another MDT meeting. Rude doctor and I nodding
acknowledgment to each other. Waving hello to our familiar team as they walked past the room . ( there are other patients there too for similar reasons) each one looking incredulous or saddened that we were back.
We had to fit in scans and biopsies. Scott had a large white dressing covering his face after one biopsy. We were not telling the kids until we knew for definite and spent the journey home making up wild and wilder reasons for dad having a blooming great white pad on his face...we came in , somehow speaking to Fiona and getting past her before she saw...Scott stood at the kitchen door mouthing WTF to me and then went and pulled dressing off then we dropped Isla off at her
Debutante Ball rehearsal , went for pizza and nobody was any the wiser!
He danced with his youngest daughter at her ball, me with a breaking heart that he
would never dance with her at her wedding. We set sail to Tasmania, stayed in our beautiful cottage
by the sea with its pink gate to the beach and waited on a phone call confirming what we knew in our
hearts. That call came as we stood looking out at the calmest of seas then we told our children. We
stood hugging, sobbing then laughing as Haggis realised that nobody was looking and went round and scarfed all the bowls of crisps and snacks we had left unattended.
We had an amazing week on an amazing island and it was just the perfect place for us to be. We headed home the following Wednesday via Royal Melbourne Hospital. We literally came straight off the ferry to there. Left kids and dog at car and were very kindly and gently told that it was now terminal cancer. The word incurable cancer was later used and we both shuddered at this term. We were quickly introduced to our new way of life . We had to tell our children that this time it didn't get
better. There was no recovery period. No rehab program was going to make this better. Surgery was not an option, the tumour was too invasive and too near brain and eye and did not have a good mortality rate and anyway...we can't remove all the cancer. We were told, when I asked , we had about a year. I thought that was a very optimistic year and that I reckoned we had about 9 months. I
was almost right, we had the most amazing 8 months together in which we loved and laughed and
lived every single day.
Knowing that you don't get a happy ending , saying it often enough actually does not prepare you. Being aware that this was happening allows you to plan somethings , like what song you would like at your funeral. It does not make it any bit easier. It does not make me lucky. Watching someone die and watching your children watch their dad die is so very, very hard.
Other people's emotions on their loss of Scott are not ones I can deal with. It is right that they are sad, feeling the need to share with us in great detail is really not necessary. Asking how I'm coping isn't really necessary just now. I'm still managing to brush my teeth, put matching clothes on and my children are still being fed and the dog is walked and of course fed. Haggis whilst very sad and subdued is still getting his priorities in the right order....food, ice blocks and tennis balls.
The morning we picked him up from his sleepover at Dusty's ( our very kind neighbours have been looking after him) he ran straight to our bedroom looking for his daddy. I made him porridge on the morning of Scott's funeral. Up until 3 weeks before he passed away Scott was still eating and drinking and shared his porridge with Haggis, always leaving him a bit. I would always send Haggis through to tell his daddy it was porridge time ( in a loud voice so Scott heard !) and he would run through to our room , let his dad know and then positioned himself under the table. For the first week after coming home he lay under the table waiting on his dad coming through.
I've not decided if it's worse when someone doesn't know what to say or someone just speaks anyway! The following have been said by real life human beings.
"
Oh, so young!; Condolences but it was inevitable ; Oh it's your birthday soon, how difficult ( well no, it's my birthday and I will still celebrate my birthday!) , ....Ooooh where was the cancer?, how ARE you coping , only the good die young; Have you been left financially well provided for? Will
you move back to Kilmarnock?" Someone even wrote to me that his funeral was bloody awful. Not
sure how that's meant to offer comfort. Other people have written blow by blow accounts of their grief, of their upset.
Most people offer beautiful words of kindness and love , some offer practical help, some just turn up and are here for us. Lots of you have offered your help by donating to our Go Fund me page , I will be closing this at the end of this week . We are all truly grateful for every dollar raised, all three thousand , two hundred and four of them. I've been in touch with the ward manager at ONJ and we will be going in this week. We've bought a selection of games and toys for all ages and we hope that other families will know the same , amazing time together that we did. I have been in touch with our lovely oncologist and told him that over $3000 will be coming for his amazing research into Head and Neck cancer, again with our wish as a family that someone is spared the pain and heartache that we are going through .
So , to end by answering the question 'how are you coping?' I'm doing it my way. We are doing it our way as a family together. With Scott still a very real part of us. I will remain optimistic. I will still look for positive things in each day. I write them down daily. They are always there in amongst the sadness I truly do feel. I shall ignore the silly comments and concentrate on the kind and supportive ones. I shall at the every least brush my teeth each day. I am beyond grateful to have known the love of Scott. To see him in his children. To be a better person for having experienced what we have the past 5 years.
I will continue to write and will continue to laugh and smile with fondness and chase a dog who's eating my crocs ( shoes of comfort , not style! ) I will look to the stars and watch sun rises and sunsets . I will just be me doing my best to keep on going with my husband in my heart instead of at my side.
Wednesday, 15 March 2017
Fourteen Days
Fourteen days, two weeks, one fortnight...that's how long I've been without my husband. It's truly awful.
When you are given a terminal diagnosis you are given pamphlets, booklets, leaflets that all in a round about way 'prepare you for death' ...with titles like ' emotions and cancer ' , ' preparing to lose a loved one' , 'dealing with dying' . They are quite upsetting to read. There is a stark reality that this will happen to you.
When you are given a terminal diagnosis , people around you ( near and far) don't really know what to say. Sometimes they say lovely , kind things other times they say rather insensitive things...I was told more than once that I was lucky to have this time , knowing my husband would die rather than dying suddenly. It is not lucky to watch your husband and to watch your children watch their father deteriorate, be ill through chemotherapy, be in such distress through radiotherapy.
It's not helpful to be asked ' ooooh have you heard of this treatment or that treatment? ' ' it really works...it is miraculous ' we would just sigh, look at each other and explain that Scott's cancer was now actually incurable ...there was no cure. It was a terminal diagnosis.
It is not helpful when people have said ' I never actually believed it would happen....I didn't think he would die' . Really? We always knew. Scott knew...he was mentally prepared. He was accepting. He was not scared. ( That's been another question ...'ooooh was he scared?' )
So for us who did know, who had accepted it there were funeral services to be considered. Scott put a lot of thought into his music choices. I have been playing them for 8 months to make them more familiar , to be less confronting. On the day we were told he had days to live ( prior to becoming whirling dervishes of silver wedding party planners) he said ....I don't know if I want them anymore...so he was told he'd better make up his mind and quickly! His original choices stayed .
We had always intended there be 2 services, one here in Melbourne and one at home in Kilmarnock in our home church. Where we were married , where our children were baptised , where we worshipped. When we were home for our brief farewell trip I wept in church as I knew the next time would be for his funeral service. It was important for us that his family and friends also had an opportunity to mourn...in a celebratory way!
So although I read the booklets, the pamphlets, had thorough preparatory discussions with oncologists, social workers , nurses, Scott himself, it seems that it does not actually prepare you for the overwhelmingly sense of loss and emptiness that I feel. In the last two weeks we have met two very special women, one being our Funeral Director. She has given us as much time with Scott as we wanted. She said it was okay to stick his ' I'd rather be riding my Suzuki' sticker on his coffin. ( he bought this for me 6 months ago for this very purpose) , she has laughed with us and has shed tears at his funeral at the same time we did. Her kindness and generosity of time has meant that there was
familiarity with the space we would be saying farewell to Scott. We were allowed to play his
favourite music loudly on Monday night ...I'm sure wherever he is he'd have heard it...we were even allowed to see Isla's dance moves to certain songs...seems her and her dad would play their music loud on the way home from late night parties! They had their own moves!
She kindly phoned me on the morning of the funeral ,' how was I ? ' ...'okay.'..not really okay and ended up in tears saying that I did not know how to do today. Did I want to come back in again?...yes I did and back I went to see how everything was set up . To see the coffin, now closed , with his boots and hat and photo and beautiful flowers on top. And a collage of photos in a big frame , each one a beautiful memory. Our memory jar ...still to be filled with our guests memories of Scott.
And in all in her kind words and actions she allowed me and my children the opportunity to farewell my husband / their beloved dad in the way the that he wanted, that we wanted.
Our other remarkable woman was our celebrant who led Scott's service. She too is kind and funny and generous of time . She too made a difficult task a bit easier. She used her words to link everything but most importantly she used my words and Scott's words. Scott wrote the most beautiful letter to the children and myself the week before he died. It is stunning and will be read at both services. Our
celebrant, too, had an emotional moment reading it out.
She gave me a wink after reading out the poem 'The Winged Skye ' and managed to say the Gaelic phrase 'Eilean Mor Sgiathach'...well enough ...no one else there would have known anyway! Thank you to a friend's daughter for providing the correct pronunciation!
She too made a difficult situation easier for us.
It was very odd coming home to a houseful of people already there! Strange walking into your home and everyone was there already. A friend had kindly gone ahead to open up and take everything out of the fridge...all ready just to be plated up...even the cream was in the piping bag for meringues...it was just too blooming hot to put anything out before hand. Friends had travelled interstate to be with us.They shared their time with us and I shared my cakes with them. It was good to spend that extra time with our friends who came back to our home.
For now , it is one day at a time. We are encouraged by continuing messages of support , stunned by donations to our Go Fund Me account. I know that Scott would be so humbled by people's generosity and we know that all money raised will be put to good use and provide for others going through a similar situation as we did.
I am often asked if I will be returning to Scotland to live. The answer to that is no. For now Australia is home. Our children are educated and work here . Our life is here. Our new life without Scott by our sides is here. This is where he wanted us to be . Even with day after day of interminable heat I am
always hopeful that cooler days are ahead.
Thank you for continued love and kindess and if you manage to go to Scott's service in Kilmarnock enjoy an empire biscuit or snowball...his favourites! Please write a message in the book that will be passed around so we know who was there. Sing the hymns with gusto because you can. Scott couldn't sing after his surgeries , he would still give it a try but it just didn't work..so do it for him!
Please make the most of everyday and do look for silver linings...they are there , just sometimes hidden from plain view. Life really is for living!
When you are given a terminal diagnosis you are given pamphlets, booklets, leaflets that all in a round about way 'prepare you for death' ...with titles like ' emotions and cancer ' , ' preparing to lose a loved one' , 'dealing with dying' . They are quite upsetting to read. There is a stark reality that this will happen to you.
When you are given a terminal diagnosis , people around you ( near and far) don't really know what to say. Sometimes they say lovely , kind things other times they say rather insensitive things...I was told more than once that I was lucky to have this time , knowing my husband would die rather than dying suddenly. It is not lucky to watch your husband and to watch your children watch their father deteriorate, be ill through chemotherapy, be in such distress through radiotherapy.
It's not helpful to be asked ' ooooh have you heard of this treatment or that treatment? ' ' it really works...it is miraculous ' we would just sigh, look at each other and explain that Scott's cancer was now actually incurable ...there was no cure. It was a terminal diagnosis.
It is not helpful when people have said ' I never actually believed it would happen....I didn't think he would die' . Really? We always knew. Scott knew...he was mentally prepared. He was accepting. He was not scared. ( That's been another question ...'ooooh was he scared?' )
So for us who did know, who had accepted it there were funeral services to be considered. Scott put a lot of thought into his music choices. I have been playing them for 8 months to make them more familiar , to be less confronting. On the day we were told he had days to live ( prior to becoming whirling dervishes of silver wedding party planners) he said ....I don't know if I want them anymore...so he was told he'd better make up his mind and quickly! His original choices stayed .
We had always intended there be 2 services, one here in Melbourne and one at home in Kilmarnock in our home church. Where we were married , where our children were baptised , where we worshipped. When we were home for our brief farewell trip I wept in church as I knew the next time would be for his funeral service. It was important for us that his family and friends also had an opportunity to mourn...in a celebratory way!
So although I read the booklets, the pamphlets, had thorough preparatory discussions with oncologists, social workers , nurses, Scott himself, it seems that it does not actually prepare you for the overwhelmingly sense of loss and emptiness that I feel. In the last two weeks we have met two very special women, one being our Funeral Director. She has given us as much time with Scott as we wanted. She said it was okay to stick his ' I'd rather be riding my Suzuki' sticker on his coffin. ( he bought this for me 6 months ago for this very purpose) , she has laughed with us and has shed tears at his funeral at the same time we did. Her kindness and generosity of time has meant that there was
familiarity with the space we would be saying farewell to Scott. We were allowed to play his
favourite music loudly on Monday night ...I'm sure wherever he is he'd have heard it...we were even allowed to see Isla's dance moves to certain songs...seems her and her dad would play their music loud on the way home from late night parties! They had their own moves!
She kindly phoned me on the morning of the funeral ,' how was I ? ' ...'okay.'..not really okay and ended up in tears saying that I did not know how to do today. Did I want to come back in again?...yes I did and back I went to see how everything was set up . To see the coffin, now closed , with his boots and hat and photo and beautiful flowers on top. And a collage of photos in a big frame , each one a beautiful memory. Our memory jar ...still to be filled with our guests memories of Scott.
And in all in her kind words and actions she allowed me and my children the opportunity to farewell my husband / their beloved dad in the way the that he wanted, that we wanted.
Our other remarkable woman was our celebrant who led Scott's service. She too is kind and funny and generous of time . She too made a difficult task a bit easier. She used her words to link everything but most importantly she used my words and Scott's words. Scott wrote the most beautiful letter to the children and myself the week before he died. It is stunning and will be read at both services. Our
celebrant, too, had an emotional moment reading it out.
She gave me a wink after reading out the poem 'The Winged Skye ' and managed to say the Gaelic phrase 'Eilean Mor Sgiathach'...well enough ...no one else there would have known anyway! Thank you to a friend's daughter for providing the correct pronunciation!
She too made a difficult situation easier for us.
It was very odd coming home to a houseful of people already there! Strange walking into your home and everyone was there already. A friend had kindly gone ahead to open up and take everything out of the fridge...all ready just to be plated up...even the cream was in the piping bag for meringues...it was just too blooming hot to put anything out before hand. Friends had travelled interstate to be with us.They shared their time with us and I shared my cakes with them. It was good to spend that extra time with our friends who came back to our home.
For now , it is one day at a time. We are encouraged by continuing messages of support , stunned by donations to our Go Fund Me account. I know that Scott would be so humbled by people's generosity and we know that all money raised will be put to good use and provide for others going through a similar situation as we did.
I am often asked if I will be returning to Scotland to live. The answer to that is no. For now Australia is home. Our children are educated and work here . Our life is here. Our new life without Scott by our sides is here. This is where he wanted us to be . Even with day after day of interminable heat I am
always hopeful that cooler days are ahead.
Thank you for continued love and kindess and if you manage to go to Scott's service in Kilmarnock enjoy an empire biscuit or snowball...his favourites! Please write a message in the book that will be passed around so we know who was there. Sing the hymns with gusto because you can. Scott couldn't sing after his surgeries , he would still give it a try but it just didn't work..so do it for him!
Please make the most of everyday and do look for silver linings...they are there , just sometimes hidden from plain view. Life really is for living!
Tuesday, 7 March 2017
The bit in between
I had literally just pressed the share my blog button almost 2 weeks ago when Scott had the first episode of decline . I could not believe the timing, he wanted me to update the blog but I didn't.
It's now Wednesday the 8th March 2017 another relentlessly hot day in Melbourne. It's been almost a whole week without him in our lives , the loss is sorely felt but in amongst sadness we smile and we laugh, we share memories ...near and distant. His presence is still felt so greatly in all we do.
On the 20th January I asked our lovely, kind but honest oncologist how may Scott die. We knew at this time we didn't have very long left. His tumour continuing to grow with a rapidity that was frightening. We had three options. Death by sleeping peacefully . Death by haemorrhage from tumour . Death by pulmonary embolism, common in people with cancer. We absorbed this new knowledge, asked if we could fly to Tasmania and were told yes we could. We went to Tasmania with a purpose and enjoyed a few days in a stunning, beautiful and peaceful setting. Managing only a few hours out and about each day and the rest spent resting.
Returning to Melbourne we were aware that tumour had grown again and was now encroaching his line of vision and this was when it was thought time to try the radiotherapy. For some reason Scott took a reaction and this accelerated his decline in health and necessitated our stay in the palliative care ward, our home for the next 2 weeks. It only accelerated what would have happened anyway and we had to take the chance...it could quite easily have worked the other way. Scott also had a chronic,serious infection, a low immune system and a rapidly , growing tumour which was now reaching for his airway. So death by airway obstruction became our fourth option. We were told ( gently) he had days to live.
So live we did. I've already shared that we celebarated our anniversary, a birthday, made music, had dog cuddles , laughed, talked, sat quietly, cried together. He wrote a letter to us which will be read out at his funerals ( why have one when you can have two?) it is beautiful and he shares his love for all of us in his words.
On Thursday 23rd February, right after I'd pressed the send button, Scott had a massive haemorrhage from his tumour. It was the most horrific moment of my life. Not the blood but the thought that this was 'it' , this is how he would die. I caught sight of the horror in my own eyes in the mirror. However for some reason it wasn't his time yet, two hours later we were playing Trivial Pursuit in the lounge. ( I know. I won!) He said that night as we had our penultimate evening stroll around the ward "I stared death in the face today ...and I won" on the Friday he played guitar, he enjoyed his surprise visit from Haggis ( Haggis who refused to get on the train home ...and had to be picked up by our friend!) .
However, at 3am he started haemorrhaging again...not quite as horrifying this time with the experience of one already. Again, not quite his time to go but with yet another severe headache ( as a result of radiotherapy) he was made comfortable and allowed to sleep. A lesser man may have slipped away but not Scott. We had all said farewells, we thought this was almost time. On Sunday morning
at 10am, Scott sat bolt upright and said "hello" looking round at us all....with us staring at him in
amazement muttering "hi!". We had, what I can only describe as a blessed day, a bonus day with Scott up and showered and up to sit and chatting . As evening approached he started developing signs of Terminal Irritabity or Terminal Agitation. No one had told me about this, it gets a tiny mention in the ' preparing for death' pamphlets we are given. It was the most awful time for me and thankfully Scott would not have had much awareness of it. I won't go into details here but I was thankful when he was finally settled and comfortable. Up until a certain point he was still reacting to his beloved music, had an awareness that we were with him and was able to tell us he loved us.
Tuesday 28th February into 1st March we knew he didn't have long. Our beds had been pushed together since the Saturday night so we were all able to be close to him. He was not left alone. On Wednesday night he simply passed away, peacefully and quietly. Leaving us with the utmost sorrow but with the utmost joy that we had had him in our lives. Whilst we cry we also still laugh heartily as he would have expected us to do. Whilst we mourn him, we look forward to carrying him with us in our hearts for always. He lives on in our actions, in our children ...in their children in times ahead. He
has touched many peoples lives whether in friendship, in work, in a kind deed, through my writing this blog.
We as a family have been touched by kindnesses shown. We are single handedly keeping our local florist in business. Our friends have visited, called, sent messages and we are grateful to each one of them . Your kindness surrounds our family with love.
We will be starting a go fund me to raise money for both Peter Mac and ONJ. We want the money to be shared and used for research into Head and Neck Cancer at Peter Mac and to be
used to purchase games and toys for the Palliative Care Ward at ONJ . Being there allowed us such precious family time and we hope that by buying some new games ( it was Trivial Pursuit or nothing!) other families may know the special time we had. These will done in Scott's memory.
Please donate if you can but also please don't feel any pressure!
What I would ask is that you make the most of ever day and remember that life is for living and laughing and most certainly for loving.
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