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!
Wednesday, 22 February 2017
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
.
Subscribe to:
Comments (Atom)