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!
Wednesday, 15 March 2017
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.
Wednesday, 22 February 2017
Live , Laugh, Love
Good morning, it's Thursday 23rd February 2017, the sun is shining , I have stunning views of the mountain ranges , The Dandenongs, The Yarra Ranges and the national parks in between. There is much green to seen. I watch the sun rise above them each morning and watch the sun set reflected on them each night. We watch the sparkle of night time fall each evening as the distant city lights up and the house and street lights come on.
We have a huge vista of floor to ceiling glass windows on our 8th floor ward and can literally see for miles. Close by we have the train station and we can stand on our balcony and wave goodbye to our children as they go home. There is a lulling background noise of traffic. Close by we have the noises of a ward, the comings and goings, the buzzer that sounds when someone that shouldn't tries to get out of bed. We now mutter ' get back to bed! ' , the gentle knock on the door as a nurse or doctor comes in. There is such a gentleness about them all. The mutterings of the airflow bed as it fills and moves air around to allow Scott to sleep well and protect his pressure areas. The buzz of the aircon which keeps the room at blooming freezing...we now have a heater!
We have been here a week, we have a familiarity with staff, with other visitors, we have progressed from nodding to chatting. We have generosity, we have kindness, we have a peaceful place to be, we have amazing children ( they have amazing parents ...it's in their genes) , we have choirs of ladies of a certain age graciously singing Happy Birthday after their concert in the foyer. We have places to go when we want to leave our room. We have the gift of a very cosy and welcome blanket knitted by someone generous of their time. We have experienced nurses mentoring new graduate nurses in their first weeks since qualifying, we share their joy , one did her first solo drug round last night. I remember those scary, early days ...one day a student, the next with ward keys in your pocket.
I am rather routine led , I like things to follow in a certain order. I call it being organised! I go for a shower, doing the walk of shame along distant corridors, with my pyjamas on and my bed hair ( has to be seen to be believed) all over the place. I was singing the other morning and unbeknownst to me
was heard...the oncology registrar asking on the ward round...was that you ? Yes! I come back ,
fresher, cleaner, fully clothed , hair washed and dried . I pack up my bed back into a chair. I use the ward laundry every second day....to maintain a supply of fresh breeks! Usually the pain doctor ( our lovely , lovely doctor who we had sadly farewelled 3 weeks ago at Peter Mac is based here and we have been unusually allowed to have her be in charge of Scott's pain control. This is unusual as it would normally be oncology team only. We are so grateful for this as Scott's pain needs are quite complex due to the location and spread of tumour. She is such a lovely person, she has strived to make Scott as pain free as possible. She always has a chat with us and shares our sense of humour.
We then have a visit from our oncology team who come around each day. They chat with us both and I have chatted at length on my own. They never make you feel you are taking up too much time. They are lovely ( in that gentle yet honest oncology way) Scott's comfort is their priority. They too have a sense of humour and are more than happy to look at our party photographs and share in our delight. They are special people and I'm glad that people choose to make oncology their speciality.
They see people ; patients and carers at their absolute most vulnerable.
Then it's a mix and match of nurses in and out, other health professionals, the nipping in and out to check if my laundry is dry! Yesterday a nurse came into our room triumphantly holding a thing with black straps aloft saying "look what I found!" .... I looked on in horror as I thought I must have dropped my bra whilst walking from laundry! It was a bag to hold Scott's second syringe driver in!
The kids come in , often at various times as they have other things on , work, school,dog looking after. We all have our evening meal together, sitting at the table, laughing, sharing , loving. They saw their mother absolutely thrash them at Trivial Pursuit ....they were generous of my victory! Being quiet around a snoozing dad is nothing new, hugging a dad hello and goodbye is nothing new. Discussing funerals and choosing music has an urgency now rather than the lightly broached subject it was before. Knowing we don't have forever isn't new but again now has an urgency around it. I
would much rather my children never had to know this pain but we take each day as it comes and make the absolute most of it. Squeeze it dry of moments to be cherished.
The kids go home, there's a dog to be loved back home. He has been getting very well looked after and probably indulged by our kind neighbours, they send us videos of Haggis. We face timed him last night. He looks gorgeous. Scott and I promenade around the ward at least twice, we go out on the balcony and watch the night sparkle, we go to bed and hope for another day ahead.
So still we live to our fullest, we love so truly and we laugh with each other. And we all have clean breeks!
We are grateful to all who posted memories ( some shockers! ) you can keep them coming please.
I have read every single one out to Scott!
We have a huge vista of floor to ceiling glass windows on our 8th floor ward and can literally see for miles. Close by we have the train station and we can stand on our balcony and wave goodbye to our children as they go home. There is a lulling background noise of traffic. Close by we have the noises of a ward, the comings and goings, the buzzer that sounds when someone that shouldn't tries to get out of bed. We now mutter ' get back to bed! ' , the gentle knock on the door as a nurse or doctor comes in. There is such a gentleness about them all. The mutterings of the airflow bed as it fills and moves air around to allow Scott to sleep well and protect his pressure areas. The buzz of the aircon which keeps the room at blooming freezing...we now have a heater!
We have been here a week, we have a familiarity with staff, with other visitors, we have progressed from nodding to chatting. We have generosity, we have kindness, we have a peaceful place to be, we have amazing children ( they have amazing parents ...it's in their genes) , we have choirs of ladies of a certain age graciously singing Happy Birthday after their concert in the foyer. We have places to go when we want to leave our room. We have the gift of a very cosy and welcome blanket knitted by someone generous of their time. We have experienced nurses mentoring new graduate nurses in their first weeks since qualifying, we share their joy , one did her first solo drug round last night. I remember those scary, early days ...one day a student, the next with ward keys in your pocket.
I am rather routine led , I like things to follow in a certain order. I call it being organised! I go for a shower, doing the walk of shame along distant corridors, with my pyjamas on and my bed hair ( has to be seen to be believed) all over the place. I was singing the other morning and unbeknownst to me
was heard...the oncology registrar asking on the ward round...was that you ? Yes! I come back ,
fresher, cleaner, fully clothed , hair washed and dried . I pack up my bed back into a chair. I use the ward laundry every second day....to maintain a supply of fresh breeks! Usually the pain doctor ( our lovely , lovely doctor who we had sadly farewelled 3 weeks ago at Peter Mac is based here and we have been unusually allowed to have her be in charge of Scott's pain control. This is unusual as it would normally be oncology team only. We are so grateful for this as Scott's pain needs are quite complex due to the location and spread of tumour. She is such a lovely person, she has strived to make Scott as pain free as possible. She always has a chat with us and shares our sense of humour.
We then have a visit from our oncology team who come around each day. They chat with us both and I have chatted at length on my own. They never make you feel you are taking up too much time. They are lovely ( in that gentle yet honest oncology way) Scott's comfort is their priority. They too have a sense of humour and are more than happy to look at our party photographs and share in our delight. They are special people and I'm glad that people choose to make oncology their speciality.
They see people ; patients and carers at their absolute most vulnerable.
Then it's a mix and match of nurses in and out, other health professionals, the nipping in and out to check if my laundry is dry! Yesterday a nurse came into our room triumphantly holding a thing with black straps aloft saying "look what I found!" .... I looked on in horror as I thought I must have dropped my bra whilst walking from laundry! It was a bag to hold Scott's second syringe driver in!
The kids come in , often at various times as they have other things on , work, school,dog looking after. We all have our evening meal together, sitting at the table, laughing, sharing , loving. They saw their mother absolutely thrash them at Trivial Pursuit ....they were generous of my victory! Being quiet around a snoozing dad is nothing new, hugging a dad hello and goodbye is nothing new. Discussing funerals and choosing music has an urgency now rather than the lightly broached subject it was before. Knowing we don't have forever isn't new but again now has an urgency around it. I
would much rather my children never had to know this pain but we take each day as it comes and make the absolute most of it. Squeeze it dry of moments to be cherished.
The kids go home, there's a dog to be loved back home. He has been getting very well looked after and probably indulged by our kind neighbours, they send us videos of Haggis. We face timed him last night. He looks gorgeous. Scott and I promenade around the ward at least twice, we go out on the balcony and watch the night sparkle, we go to bed and hope for another day ahead.
So still we live to our fullest, we love so truly and we laugh with each other. And we all have clean breeks!
We are grateful to all who posted memories ( some shockers! ) you can keep them coming please.
I have read every single one out to Scott!
Thursday, 16 February 2017
Hospice-tality
It's Friday the 17th February and we are once again in a hospital bed, in a ward full of lovely nurses and kind doctors. A room with a view of the distant hills , a balcony to sit at and have just been visited by a flock of corellas ( parroty birds) but as soon as they saw my phone coming out they flew off ...squawking and mocking.
A kitchen with a toasted sandwich maker and a fridge for my packed lunch, a room full of jigsaws and books ( I think I have a fear of jigsaws, I really don't like them) , a spa bathroom with candles and bubbles. Little nooks with comfy chairs to sit in. There are sparkly fairy lights in the corridor which are lit at night and on the big balcony of the lounge. There is much, much kindness and gentleness and then that double edged sword of honesty.
Scott's condition has deteriorated , his tumour has grown and grown , his radiotherapy made things much worse and exacerbated a probably already declining health. We gave it a go, we stopped half way through and things just got steadily worse as this week has continued. We were admitted to the Penthouse Suite of Olivia Newton John ( ONJ) Centre of Cancer and Wellness. It seems we are doing the cancer part of the deal. We are in the palliative care ward or for us UK types the hospice ward.
We have been told this morning, very beautifully and very gently that we really don't have very much time left . I would like to ask that if you have something kind, something funny , something stupid or even crazy , something loving can you please share it with us. Why wait until someone's no longer here before you wax lyrical about them.
I have been lucky to have Scott as my husband, we've been together for over 28 years , we have laughed and laughed, shared many a knowing look, we finish sentences , we go to say the same thing at the same time, we have made three fabulous children who share our sense of humour, we've known sadness , we've endured time apart, we have adventured to the other side of the world, he's put up with my ( occasional ) moods....I've put up with his musical tastes. I've loved him for just forever and have always said I love him forever and a day. I've seen him at his lowest and have watched him , twice, relearn how to speak, to eat and to drink after major surgeries. He is my best friend , my true love, my confidante, my everything.
He is a much loved dad and adored dog daddy. He is a late night drinker of tea with Fiona. They watch River City together ( sad but true) . In healthier times was a mountain biker with Ruaraidh and they both mooch around the garage doing man things. I do not go in the garage as spiders live in the garage. He is a dad taxi for his youngest daughter...Isla the socialite. Long past me going to bed , Scott would wait up until time to pick her up. We have laughed, we have cried but we have always loved as family. I shall say this only once as it pains me but I think he is Haggis' favourite human. Haggis loves us all but I think he loves Scott the most.
He is a wearer of RM Williams boots...a very expensive , investment buy . Bought for his birthday as an indulgement , with a newly given terminal diagnosis he bought the boots with a lifetime
guarantee! They are polished and conditioned and lavished with much care and attention.
He is a motor cyclist. I have said all along do not leave me with that bloody motorbike....he is leaving me with that bloody motorbike. We thought we had a bit more time than we do. He has enjoyed biking around Victorian countryside .
He is a guitarist....with a penchant for collecting guitars ( soon to be known as bloody guitars!) and has enjoyed making effects pedals for them in his workshop. I've enjoyed listening to him play guitar for so many years ( just not the loud noisy stuff!)
He makes a mean spag Bol....that is it! But it's a good one!
He is a mountain climber and has walked many a Scottish mountain in all weathers...usually with his friend Mark. It's to snow at the weekend ...great...lets go up a craggy ravine! It's lashing with rain...nah! No worries.
He is a proud Scottish man but equally proud to now being an Australian. Taking our citizenship last year was an achievement that he was very proud of.
He was an adored youngest son. He loved his mum and dad very much and really missed them when we moved here . He is and adored and probably indulged little brother. He is an uncle and a cousin and a nephew.
He is lots of things to lots of people and I would love to share your thoughts and memories now whilst he can still hear them.
#heartisbreaking
#onj
#xanadu
#lovelaughlive
A kitchen with a toasted sandwich maker and a fridge for my packed lunch, a room full of jigsaws and books ( I think I have a fear of jigsaws, I really don't like them) , a spa bathroom with candles and bubbles. Little nooks with comfy chairs to sit in. There are sparkly fairy lights in the corridor which are lit at night and on the big balcony of the lounge. There is much, much kindness and gentleness and then that double edged sword of honesty.
Scott's condition has deteriorated , his tumour has grown and grown , his radiotherapy made things much worse and exacerbated a probably already declining health. We gave it a go, we stopped half way through and things just got steadily worse as this week has continued. We were admitted to the Penthouse Suite of Olivia Newton John ( ONJ) Centre of Cancer and Wellness. It seems we are doing the cancer part of the deal. We are in the palliative care ward or for us UK types the hospice ward.
We have been told this morning, very beautifully and very gently that we really don't have very much time left . I would like to ask that if you have something kind, something funny , something stupid or even crazy , something loving can you please share it with us. Why wait until someone's no longer here before you wax lyrical about them.
I have been lucky to have Scott as my husband, we've been together for over 28 years , we have laughed and laughed, shared many a knowing look, we finish sentences , we go to say the same thing at the same time, we have made three fabulous children who share our sense of humour, we've known sadness , we've endured time apart, we have adventured to the other side of the world, he's put up with my ( occasional ) moods....I've put up with his musical tastes. I've loved him for just forever and have always said I love him forever and a day. I've seen him at his lowest and have watched him , twice, relearn how to speak, to eat and to drink after major surgeries. He is my best friend , my true love, my confidante, my everything.
He is a much loved dad and adored dog daddy. He is a late night drinker of tea with Fiona. They watch River City together ( sad but true) . In healthier times was a mountain biker with Ruaraidh and they both mooch around the garage doing man things. I do not go in the garage as spiders live in the garage. He is a dad taxi for his youngest daughter...Isla the socialite. Long past me going to bed , Scott would wait up until time to pick her up. We have laughed, we have cried but we have always loved as family. I shall say this only once as it pains me but I think he is Haggis' favourite human. Haggis loves us all but I think he loves Scott the most.
He is a wearer of RM Williams boots...a very expensive , investment buy . Bought for his birthday as an indulgement , with a newly given terminal diagnosis he bought the boots with a lifetime
guarantee! They are polished and conditioned and lavished with much care and attention.
He is a motor cyclist. I have said all along do not leave me with that bloody motorbike....he is leaving me with that bloody motorbike. We thought we had a bit more time than we do. He has enjoyed biking around Victorian countryside .
He is a guitarist....with a penchant for collecting guitars ( soon to be known as bloody guitars!) and has enjoyed making effects pedals for them in his workshop. I've enjoyed listening to him play guitar for so many years ( just not the loud noisy stuff!)
He makes a mean spag Bol....that is it! But it's a good one!
He is a mountain climber and has walked many a Scottish mountain in all weathers...usually with his friend Mark. It's to snow at the weekend ...great...lets go up a craggy ravine! It's lashing with rain...nah! No worries.
He is a proud Scottish man but equally proud to now being an Australian. Taking our citizenship last year was an achievement that he was very proud of.
He was an adored youngest son. He loved his mum and dad very much and really missed them when we moved here . He is and adored and probably indulged little brother. He is an uncle and a cousin and a nephew.
He is lots of things to lots of people and I would love to share your thoughts and memories now whilst he can still hear them.
#heartisbreaking
#onj
#xanadu
#lovelaughlive
Friday, 3 February 2017
World Cancer Day
It's Saturday 4th February ....apparently World Cancer Day. Who knew? For us everyday is Cancer Day, for us everyday is living with the emotional, financial, psychological & physical effects of cancer. It's a bugger! It's horrid! It's nasty! It's scary! It's devastating! It's bloody inconvenient! It's detestable! At the moment , our own particular cancer is being rather aggressive and growing very quickly, a bit too quickly for us. And , I think , even surprising our consultants too, with it's stealth.
Not content with it's contained space within Scott's face it's decided to grow up around his eye and is now in his line of vision ...a kind of ' here I am!' . We had a saved up for, trick up our sleeves of radiotherapy. Held in reserve. In case of emergency break here. For use later. A last hurrah!
On Tuesday ( whilst I was having my minor mini meltdown) we had 5 appointments at Peter Mac, one after the other after the other . There were tears, snots, smiles, laughs, hugs , more tears, much honesty, more tears but I think we ended on a smile. First appointment was with our nutritionist...did you have a nice holiday ? I asked. How did you know I was on holiday ? she countered ...er ..you're all tanned ....and your colleague told us you were on holiday last week! Not really stalking, just being polite! Scott is eating and drinking okay so not really a terrible important part of our day (though we do know that nutrition is very important in cancer care , just not our most pressing issue)
Then it was time to see Ben, our lovely oncologist, who always walks out to the waiting room to greet us, who is always gentle in his manner and kind in his ways but brutally honest in his words....but done in a nice, kind, gentle manner! He looked shocked at the visible increase in size of Scott's tumour.....and mentioned the ' in emergency , break glass' time might be now rather than later.
We also discussed our Advanced Care Directive...not for the faint hearted or emotionally unstable. I spoke with my high pitched crying voice ( the one which freezes when it has something important to say) ...he now patiently waits and Scott pushes the tissues nearer me. We have a familiar routine. I'm glad he never rolls his eyes and says in an out loud voice, bloody hell , here she goes again! He
answers my question gently and honestly.
Then it was time to go to see our Pain Specialist doctor. She has been amazing. She is also very kind and gentle and determined that Scott shall not be in pain and if he is that we can quickly solve it. She has repeatedly called us at home and whilst we were in Tasmania to check how Scott is. When Scott was in hospital recently , she resolved a mini pain crisis for him and then came back and sat with me for 30 minutes, chatting , comforting, laughing whilst Scott, now pain free, slept. She , personally, has made such a difference to our lives. She is an amazing doctor and wonderful , kind human being.
Sadly for us this was our last appoinement with her as she is moving on to be kind and compassionate with other patients. This was the huggy part of our day. I left with tears in my eyes and left her with tears in hers.
Then , it was time to go and meet with another lovely person , our Radiation Oncologist. We've known him almost 5 years now and he is such a gentle, kind and clever man . However, when your
oncologist puts his head in his hands when he sees your husband's face, that's never a good sign. We were there to discuss radiotherapy as a further down the line topic. His words were "I don't think I actually have anything positive I can say to you both." Sob! However, after a discussion, another look at scans, a consultation with another senior oncologist we are breaking the glass now and Scott will start , what is known as 'Quad Shot' radiotherapy this coming week. We are hopeful that it will shrink the growth of tumour around Scott's eye and stop it further encroaching on his vision. That is all it will do. It won't cure cancer, it won't make it all better...it will just , if we are lucky , reduce swelling.
Finally, it was time to traipse around to our Head and Neck Cancer team social worker for a catch up. I have counselling sessions with her. I cry, she says it's okay to cry, I cry again, we laugh. She offers wise words, ( sometimes I take no heed of them but sometimes they make sense) , I cry some more, I speak in my high pitched voice, I bemoan the fact I'm an unattractive crier and then I feel better after having chatted. She has , wonderfully, liaised with Centrelink, a government agency , and spoken to people I wouldn't have been given access to and finally our application for a carers allowance has
been agreed and backdated after it was declined as apparently Scott wasn't terminally ill enough.
We had to return back to Peter Mac on Wednesday afternoon, which at that point had been our only appointment free day. We are now attending appointments in the basement level where radiotherapy lives.
Scott had to have another CT scan and be fitted for his face mask. This mask is screwed into the table and Scott is fixed there as his treatment is carried out. He found this much more difficult than it was first time round ( Scott had 6 weeks of daily, aggressive radiotherapy in 2012) as he has had further surgery and reconstruction of his mouth since then and this tumour is pushing his mouth from the inside. He has a little breathing tube in his mouth. He is very brave...each patient has their own , individually made mask. Some people keep them as a memento.
Yesterday , our Radiation oncologist called me to tell me he's found , on the CT scans , a fairly large malignant area on the opposite side ...did we give permission for it to be zapped as well. Sigh! Yes, of course. So we were feeling rather deflated last night.
So , on World Cancer Day, I give my thanks to everybody involved in our care, from the volunteers who run the library, to the research scientists, to the Pet Therapists, to the oncologists, to the nurses, to the admin staff, to the cleaning staff and every single one of you in between..
You make a difference to us.
Check out your lumps and bumps.
If it's not right...it might actually be not right, so get it checked out.
Love like you've never loved before. Roar like a bull with laughter. Live like it's worth living for.
( and to my lovely friend who asked where skinny Mhaggie had gone...I ate her! )
#worldcancerday
.
Not content with it's contained space within Scott's face it's decided to grow up around his eye and is now in his line of vision ...a kind of ' here I am!' . We had a saved up for, trick up our sleeves of radiotherapy. Held in reserve. In case of emergency break here. For use later. A last hurrah!
On Tuesday ( whilst I was having my minor mini meltdown) we had 5 appointments at Peter Mac, one after the other after the other . There were tears, snots, smiles, laughs, hugs , more tears, much honesty, more tears but I think we ended on a smile. First appointment was with our nutritionist...did you have a nice holiday ? I asked. How did you know I was on holiday ? she countered ...er ..you're all tanned ....and your colleague told us you were on holiday last week! Not really stalking, just being polite! Scott is eating and drinking okay so not really a terrible important part of our day (though we do know that nutrition is very important in cancer care , just not our most pressing issue)
Then it was time to see Ben, our lovely oncologist, who always walks out to the waiting room to greet us, who is always gentle in his manner and kind in his ways but brutally honest in his words....but done in a nice, kind, gentle manner! He looked shocked at the visible increase in size of Scott's tumour.....and mentioned the ' in emergency , break glass' time might be now rather than later.
We also discussed our Advanced Care Directive...not for the faint hearted or emotionally unstable. I spoke with my high pitched crying voice ( the one which freezes when it has something important to say) ...he now patiently waits and Scott pushes the tissues nearer me. We have a familiar routine. I'm glad he never rolls his eyes and says in an out loud voice, bloody hell , here she goes again! He
answers my question gently and honestly.
Then it was time to go to see our Pain Specialist doctor. She has been amazing. She is also very kind and gentle and determined that Scott shall not be in pain and if he is that we can quickly solve it. She has repeatedly called us at home and whilst we were in Tasmania to check how Scott is. When Scott was in hospital recently , she resolved a mini pain crisis for him and then came back and sat with me for 30 minutes, chatting , comforting, laughing whilst Scott, now pain free, slept. She , personally, has made such a difference to our lives. She is an amazing doctor and wonderful , kind human being.
Sadly for us this was our last appoinement with her as she is moving on to be kind and compassionate with other patients. This was the huggy part of our day. I left with tears in my eyes and left her with tears in hers.
Then , it was time to go and meet with another lovely person , our Radiation Oncologist. We've known him almost 5 years now and he is such a gentle, kind and clever man . However, when your
oncologist puts his head in his hands when he sees your husband's face, that's never a good sign. We were there to discuss radiotherapy as a further down the line topic. His words were "I don't think I actually have anything positive I can say to you both." Sob! However, after a discussion, another look at scans, a consultation with another senior oncologist we are breaking the glass now and Scott will start , what is known as 'Quad Shot' radiotherapy this coming week. We are hopeful that it will shrink the growth of tumour around Scott's eye and stop it further encroaching on his vision. That is all it will do. It won't cure cancer, it won't make it all better...it will just , if we are lucky , reduce swelling.
Finally, it was time to traipse around to our Head and Neck Cancer team social worker for a catch up. I have counselling sessions with her. I cry, she says it's okay to cry, I cry again, we laugh. She offers wise words, ( sometimes I take no heed of them but sometimes they make sense) , I cry some more, I speak in my high pitched voice, I bemoan the fact I'm an unattractive crier and then I feel better after having chatted. She has , wonderfully, liaised with Centrelink, a government agency , and spoken to people I wouldn't have been given access to and finally our application for a carers allowance has
been agreed and backdated after it was declined as apparently Scott wasn't terminally ill enough.
We had to return back to Peter Mac on Wednesday afternoon, which at that point had been our only appointment free day. We are now attending appointments in the basement level where radiotherapy lives.
Scott had to have another CT scan and be fitted for his face mask. This mask is screwed into the table and Scott is fixed there as his treatment is carried out. He found this much more difficult than it was first time round ( Scott had 6 weeks of daily, aggressive radiotherapy in 2012) as he has had further surgery and reconstruction of his mouth since then and this tumour is pushing his mouth from the inside. He has a little breathing tube in his mouth. He is very brave...each patient has their own , individually made mask. Some people keep them as a memento.
Yesterday , our Radiation oncologist called me to tell me he's found , on the CT scans , a fairly large malignant area on the opposite side ...did we give permission for it to be zapped as well. Sigh! Yes, of course. So we were feeling rather deflated last night.
So , on World Cancer Day, I give my thanks to everybody involved in our care, from the volunteers who run the library, to the research scientists, to the Pet Therapists, to the oncologists, to the nurses, to the admin staff, to the cleaning staff and every single one of you in between..
You make a difference to us.
Check out your lumps and bumps.
If it's not right...it might actually be not right, so get it checked out.
Love like you've never loved before. Roar like a bull with laughter. Live like it's worth living for.
( and to my lovely friend who asked where skinny Mhaggie had gone...I ate her! )
#worldcancerday
.
Monday, 30 January 2017
Streeeeetched
It's Tuesday the 31st January, it's early o'clock and sun isn't quite up yet but we are. The air outside is fresh after a very hot and humid day yesterday. We've had some blessed overnight rain that seems to have cleared the air again. Today is a new day full of its own challenges and confronting discussions. We have a very full on half day at Peter Mac where decisions and choices will be discussed , lots of talking and lots of listening to be done and as always I write it all down in my journal.
On Sunday morning ( Saturday evening UK time) Scott's much loved mum and my children's much adored gran quietly slipped away. She is missed ((as we physically miss all our family / friends being so far away) everyday but is now at peace after the last few years of living with ever declining dementia. I am grateful that we got to spend time with her each day when we visited in July. There was still a spark of recognition for 'her boy!' and delight in a strawberry tart. The last few months have been spent happily and content in a nursing home in Ayr , with pleasant garden views and caring staff. We are grateful to both of Scott's sisters for their constancy in her life.
Then along came Monday with a BAM! Scott's problem that he was admitted to hospital the other week returning , Fiona with the problem that she needed emergency surgery for last May had flared up . Ruaraidh at work, Isla at work. Me , with a headless chicken running around inside my head , trying to juggle everything emotionally and physically, running round to pay Isla's physio appointment that I now couldn't go to . Being verbally abused by some local idiot and his embarrassed looking dog...he would have ranted at anyone who was passing so I didn't take it personally...just felt like having a good old rant back at him! Packing hospital bags.
Peter Mac were called, apparently we had an appointment that afternoon ( I got the appointment letter in post later) so we would go in for that and see what followed. We actually met one of our
medical team in the lift so had a quick consultation with her and she would follow us up after our appointment. So that was 3 hours spent at Peter Mac meanwhile my daughter had to go to our local
A&E department and send me text updates about what was happening....which initially wasn't much.
We got an uber ( usually a good experience) cab...driver literally did not know right from left. Now, I sometimes have to think which is which but I am not being paid to drive people around the city! I got dropped off ( after what seemed like an eternity of rush hour traffic and an eternity of driver humming) at our local hospital A&E department. I went in to reception , where it smelled of vomit, stood in line behind someone apprehended by police and was then given my sticky VISITOR pass and allowed through....just in time as , like last time, Fiona went ever so slightly unconscious. This is horrid to see and more horrid as she came round and the first word she said was an expletive! I didn't know whether to be delighted she was breathing again or wash her mouth out with the anti bacterial hand spray on the wall behind me.
We were then admitted to a ward for emergency surgery tomorrow. (Ironically , she is in the lovely Olivia Newton John cancer centre as a surgical boarder whilst Scott was in a sugical bed as an
oncology boarder the other week) she has a room with a beautiful view out to the Dandenong Hills ,
was starving as she had been fasted 'just in case' and sore. So she will be having surgery this morning and I will be at Peter Mac with Scott and not with her and feeling very torn between the two. I was reminded of the 1976 toy Stretch Armstrong , who could be pulled and pulled and apparently could be stretched much more than his actual size. I'm hoping I have the emotional and mental stretch for all of this,
School is back tomorrow, buttons need sewn on a dress...that's if I can thread the needle...I also need to try and fit an optometrist visit in sometime, forms need printed and signed....in the olden days ( like 2 years ago) you were physically given the forms now we have to doing them ourselves and return them. This is Isla's last year at school. Hurrah! No more school fees, no more school shoes (ever, ever, ever!) , no more knee high white socks ( after November...I'm getting ahead of myself with the excitement!) however there will be eisteddfod and swimming carnivals and athletics carnivals and school formal all to be organised as she is a house captain which brings with it not just golden braid on her blazer but a whole load of responsibility and organising....I'm hoping there is time for studying as well. Year 12 is as big as it gets out here. Lots of responsibilty, lots of high expectations....just lots of lots off really. We've had a set of dodgy hips thrown in for good measure
and waiting on referral appointments for those.
Sigh!
Sigh!
So life is pretty stressy at the moment, it will hopefully settle down once Fiona is home and I don't need to be in two places at once. Scott's appointments are a constant and we are grateful that he is well looked after. One of our lovely doctors even called us when we were in Tasmania to check he was okay.
So , maybe after today is over and done with I can get back to onwards...and just onwards. Enough drama for the week thankyou!
On Sunday morning ( Saturday evening UK time) Scott's much loved mum and my children's much adored gran quietly slipped away. She is missed ((as we physically miss all our family / friends being so far away) everyday but is now at peace after the last few years of living with ever declining dementia. I am grateful that we got to spend time with her each day when we visited in July. There was still a spark of recognition for 'her boy!' and delight in a strawberry tart. The last few months have been spent happily and content in a nursing home in Ayr , with pleasant garden views and caring staff. We are grateful to both of Scott's sisters for their constancy in her life.
Then along came Monday with a BAM! Scott's problem that he was admitted to hospital the other week returning , Fiona with the problem that she needed emergency surgery for last May had flared up . Ruaraidh at work, Isla at work. Me , with a headless chicken running around inside my head , trying to juggle everything emotionally and physically, running round to pay Isla's physio appointment that I now couldn't go to . Being verbally abused by some local idiot and his embarrassed looking dog...he would have ranted at anyone who was passing so I didn't take it personally...just felt like having a good old rant back at him! Packing hospital bags.
Peter Mac were called, apparently we had an appointment that afternoon ( I got the appointment letter in post later) so we would go in for that and see what followed. We actually met one of our
medical team in the lift so had a quick consultation with her and she would follow us up after our appointment. So that was 3 hours spent at Peter Mac meanwhile my daughter had to go to our local
A&E department and send me text updates about what was happening....which initially wasn't much.
We got an uber ( usually a good experience) cab...driver literally did not know right from left. Now, I sometimes have to think which is which but I am not being paid to drive people around the city! I got dropped off ( after what seemed like an eternity of rush hour traffic and an eternity of driver humming) at our local hospital A&E department. I went in to reception , where it smelled of vomit, stood in line behind someone apprehended by police and was then given my sticky VISITOR pass and allowed through....just in time as , like last time, Fiona went ever so slightly unconscious. This is horrid to see and more horrid as she came round and the first word she said was an expletive! I didn't know whether to be delighted she was breathing again or wash her mouth out with the anti bacterial hand spray on the wall behind me.
We were then admitted to a ward for emergency surgery tomorrow. (Ironically , she is in the lovely Olivia Newton John cancer centre as a surgical boarder whilst Scott was in a sugical bed as an
oncology boarder the other week) she has a room with a beautiful view out to the Dandenong Hills ,
was starving as she had been fasted 'just in case' and sore. So she will be having surgery this morning and I will be at Peter Mac with Scott and not with her and feeling very torn between the two. I was reminded of the 1976 toy Stretch Armstrong , who could be pulled and pulled and apparently could be stretched much more than his actual size. I'm hoping I have the emotional and mental stretch for all of this,
School is back tomorrow, buttons need sewn on a dress...that's if I can thread the needle...I also need to try and fit an optometrist visit in sometime, forms need printed and signed....in the olden days ( like 2 years ago) you were physically given the forms now we have to doing them ourselves and return them. This is Isla's last year at school. Hurrah! No more school fees, no more school shoes (ever, ever, ever!) , no more knee high white socks ( after November...I'm getting ahead of myself with the excitement!) however there will be eisteddfod and swimming carnivals and athletics carnivals and school formal all to be organised as she is a house captain which brings with it not just golden braid on her blazer but a whole load of responsibility and organising....I'm hoping there is time for studying as well. Year 12 is as big as it gets out here. Lots of responsibilty, lots of high expectations....just lots of lots off really. We've had a set of dodgy hips thrown in for good measure
and waiting on referral appointments for those.
Sigh!
Sigh!
So life is pretty stressy at the moment, it will hopefully settle down once Fiona is home and I don't need to be in two places at once. Scott's appointments are a constant and we are grateful that he is well looked after. One of our lovely doctors even called us when we were in Tasmania to check he was okay.
So , maybe after today is over and done with I can get back to onwards...and just onwards. Enough drama for the week thankyou!
Thursday, 19 January 2017
That Friday Feeling
It's Friday 20th January 2017. This is our 14th day in hospital this month! Our year isn't even 3 weeks old and we've spent 2 weeks of it in hospital. We are optimistic that we will be back home by mid afternoon today and hoping that we don't have to return until the 31st January, our next scheduled appointment.
We woke on Sunday morning to a mini medical emergency that needed dealt with quickly. Without repeating the ins and outs of a communication nightmare we then had to go to our local A&E ( Peter Mac does not have an emergency department thanks to the wisdom of the Victorian Government. Huge big all singing , all dancing showcase hospital and no place for people with cancer to go out of hours if they have a medical problem.) Our local hospital does not have access to our Peter Mac notes and whilst I am very capable of giving a very detailed history and report not everyone will. This was as frustrating for us on Sunday as it was for the Acute Emergency Consultant we dealt with.
We were admitted to our local hospital's surgical ward as an oncology boarder as there were no beds available at their oncology unit or at Peter Mac. We have become accustomed to delicous meals three times a day interspersed with tasty snacks three times a day. This was not the case in local hospital and rather disappointing for Scott. However we quickly became institutionalised to the ward goings on and the nurses were very lovely and doing their absolute best. The best thing about local hospital? The train station is directly opposite and within 20 minutes I was door to door. Ward to home. Home to ward.
On Tuesday we got word that a bed was available at Peter Mac and we would be transferred over...we had packed our things in such a hurry of the anticipation of going and then were told it wouldn't be for another 3 hours! So then had to keep dipping in and out of bags! At 4pm we were picked up by Mr Grumpy and his much quieter pal! We were driven to Peter Mac in a Patient Transport Ambulance and I got to ride shotgun and had a much better view than Scott. A sense of homecoming and familiarity ( although a different ward than normal) . The freedom to wander around , use pantry , make cups of tea , peel oranges! Scott was then moved out of their assessment unit and given the biggest side room we have ever seen. It seemed like an upgrade to the Excelsior Suite...it turns out it was the bariatric room. There are two on that ward and are for very overweight patients. The toilet was HUGE and we were scared Scott might fall down it as he is super skinny now!
We have been well attended to by nurses, doctors, food is excellent and plentiful. The first thing Scott did was order his meals! If we are going to spend time in hospital this is the one we would rather be in! I've read 3 books in past 6 days , I take the early morning commuter train I ironically used to
catch for work and then jump on a tram and join Scott at 7.45am. Our day is interspersed with doctors rounds, IVs going up, IVs coming down, eating 6 times a day, watching life go past 6 floors down ...( slightly bemoaning our third floor view of city when I see the sixth floor view and thinking of that firework display!) . We've had some very thorough discussions with our consultants , a few snots and tears along the way....Scott now just pushes the box of tissues towards me. My voice freezes...the words are there but don't come out and then come out in a strangulated high pitch tone! Sigh! My face crumples and I'm aware that I am such an unattractive crier. You would think after almost 5 years of being a professional crier I'd have it down to a fine art but no....every confronting moment is a new one and fresh tears fall.
Anyway...onwards and just onwards at the moment. There is still life to be lived, love to feel and lots of smiling to do.
We woke on Sunday morning to a mini medical emergency that needed dealt with quickly. Without repeating the ins and outs of a communication nightmare we then had to go to our local A&E ( Peter Mac does not have an emergency department thanks to the wisdom of the Victorian Government. Huge big all singing , all dancing showcase hospital and no place for people with cancer to go out of hours if they have a medical problem.) Our local hospital does not have access to our Peter Mac notes and whilst I am very capable of giving a very detailed history and report not everyone will. This was as frustrating for us on Sunday as it was for the Acute Emergency Consultant we dealt with.
We were admitted to our local hospital's surgical ward as an oncology boarder as there were no beds available at their oncology unit or at Peter Mac. We have become accustomed to delicous meals three times a day interspersed with tasty snacks three times a day. This was not the case in local hospital and rather disappointing for Scott. However we quickly became institutionalised to the ward goings on and the nurses were very lovely and doing their absolute best. The best thing about local hospital? The train station is directly opposite and within 20 minutes I was door to door. Ward to home. Home to ward.
On Tuesday we got word that a bed was available at Peter Mac and we would be transferred over...we had packed our things in such a hurry of the anticipation of going and then were told it wouldn't be for another 3 hours! So then had to keep dipping in and out of bags! At 4pm we were picked up by Mr Grumpy and his much quieter pal! We were driven to Peter Mac in a Patient Transport Ambulance and I got to ride shotgun and had a much better view than Scott. A sense of homecoming and familiarity ( although a different ward than normal) . The freedom to wander around , use pantry , make cups of tea , peel oranges! Scott was then moved out of their assessment unit and given the biggest side room we have ever seen. It seemed like an upgrade to the Excelsior Suite...it turns out it was the bariatric room. There are two on that ward and are for very overweight patients. The toilet was HUGE and we were scared Scott might fall down it as he is super skinny now!
We have been well attended to by nurses, doctors, food is excellent and plentiful. The first thing Scott did was order his meals! If we are going to spend time in hospital this is the one we would rather be in! I've read 3 books in past 6 days , I take the early morning commuter train I ironically used to
catch for work and then jump on a tram and join Scott at 7.45am. Our day is interspersed with doctors rounds, IVs going up, IVs coming down, eating 6 times a day, watching life go past 6 floors down ...( slightly bemoaning our third floor view of city when I see the sixth floor view and thinking of that firework display!) . We've had some very thorough discussions with our consultants , a few snots and tears along the way....Scott now just pushes the box of tissues towards me. My voice freezes...the words are there but don't come out and then come out in a strangulated high pitch tone! Sigh! My face crumples and I'm aware that I am such an unattractive crier. You would think after almost 5 years of being a professional crier I'd have it down to a fine art but no....every confronting moment is a new one and fresh tears fall.
Anyway...onwards and just onwards at the moment. There is still life to be lived, love to feel and lots of smiling to do.
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