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!
Monday, 30 January 2017
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.
Wednesday, 11 January 2017
About time
It's Thursday 12th January 2017. I am typing this as Anthony the Handyman repairs the damage to house and garage caused by our freak storm 2 weeks ago. It's a hot summers day but most days are hot summer days just of varying degrees of heat. It's still school holidays until the end of the month though kids are all still working so are in and out at various times. Scott and I have been backwards and forwards at continual medical appointments this week , today being our only appointment free day this week.
We spent 8 days in a side room on the third floor at Peter Mac hospital, overlooking the city ...the other side of the ward looks on to Royal Melbourne Hospital so we certainly had the better view this time. I spent 8 days wrapped in a cardigan with a blanket over my ankles ( channeling my inner granny) as the room was so cool with the aircon behind my seat. Meanwhile , outside, Melbourne melted ever so slightly. I would arrive on the ward just after 7.30am and was kindly picked up at 7pm by my friend...who would then listen to my tales of woe on the way home. I was asked on Friday why I spent all day here...I felt I had to justify myself and primarily I said because I actully quite like my husband and we quite like spending time with each other. Other reasons included being there on time for doctors coming round, usually just after 8am , being there to peel Scott's oranges and of course the free air conditioning unit blasting cold air on my ankles.
We both quickly became institutionalised to hospital routine, most of which revolves around food and mealtimes ( though I think that is generally how I live anyway!) Breakfast to start the day followed by morning tea and then it was lunch which was quickly followed by afternoon tea and then tea and then supper! However ....just to keep us on our toes, sometimes afternoon tea was later than normal which meant you were still groaningly full of food at teatime which would in turn mean supper could be a struggle! Meals are ordered through a bedside laptop . We had access to a pantry for tea making facilities and orange peeling purposes. A tiny little space where I often met other patients partners and chit chat would follow. I was asked by one lady with an accent who had problems with my accent, "what's he in for?" ....er, that would be cancer. Then she started getting quieter and quieter in a Les Dawson fashion talking about her husband's liver cancer until I couldn't hear / nor understand her. So I took my orange segments, a cup of tea and left her to her cup of milo!
Scott snoozed, I read, Scott snoozed, I may have snoozed, Scott snoozed, I wrote emails, Scott snoozed....well Scott did a lot of snoozing and I did a lot of just sitting quietly. Yet each day, Scott got a bit brighter, a bit better , this was encouraging to see as he had been very unwell when he was admitted. Nurses popped in and out, doctors popped in and out, our children popped in and out , nutritionists and speech pathologist popped in and out. Food was constantly arriving. The ward cleaner popped in and out...I learned when to lift my feet off the floor at the right time and would have a wee chat with her each day.
Scott was discharged on Saturday morning ...Peter Mac threw us out on the hottest day of the week! Goodbye frozen ankles, farewell cardigans, no more oranges to peel as Woolworths ( supermarket) hadn't quite got my online delivery right...3kg oranges ordered , one wee sad and lonely orange delivered, 5 bananas ordered...4 yellow and one almost speckled black one delivered....the worst of
all though was a Cadbury Double Decker ( an imported treat) which looked like the delivery driver had kept it in his back pocket for safety! Squashed beyond recognition! Anyway ...email sent, refund given and a free delivery code too!
We had an appointment with our lovely, kind, gentle yet brutally honest oncologist yesterday
afternoon. He had been on leave whilst Scott was ill. So after I brought him up to date with our last 2 weeks, he brought us up to date with last Friday's CT report. It did not make joyful reading. It was as we expected but still shocking to be told. The tumour has continued to grow sizeably. The chemotherapy, which was always a palliative measure never curative, had not worked and had just succeeded in making Scott very unwell. Along with our oncologicist's advice , our children's agreement we have made the decision to stop actively taking treatment. Any further treatment would just result in Scott suffering from horrific side effects for very little if any gain. Nobody thinks that's an option.
So , we , as our little family of five, huddled in together last night .What was always inevitable is still inevitable. I feel reality is constantly tapping me on the shoulder, whispering in my ear. But we shall absolutely be living and loving and laughing together and making the absolute most of the time we have together.
#pants
We spent 8 days in a side room on the third floor at Peter Mac hospital, overlooking the city ...the other side of the ward looks on to Royal Melbourne Hospital so we certainly had the better view this time. I spent 8 days wrapped in a cardigan with a blanket over my ankles ( channeling my inner granny) as the room was so cool with the aircon behind my seat. Meanwhile , outside, Melbourne melted ever so slightly. I would arrive on the ward just after 7.30am and was kindly picked up at 7pm by my friend...who would then listen to my tales of woe on the way home. I was asked on Friday why I spent all day here...I felt I had to justify myself and primarily I said because I actully quite like my husband and we quite like spending time with each other. Other reasons included being there on time for doctors coming round, usually just after 8am , being there to peel Scott's oranges and of course the free air conditioning unit blasting cold air on my ankles.
We both quickly became institutionalised to hospital routine, most of which revolves around food and mealtimes ( though I think that is generally how I live anyway!) Breakfast to start the day followed by morning tea and then it was lunch which was quickly followed by afternoon tea and then tea and then supper! However ....just to keep us on our toes, sometimes afternoon tea was later than normal which meant you were still groaningly full of food at teatime which would in turn mean supper could be a struggle! Meals are ordered through a bedside laptop . We had access to a pantry for tea making facilities and orange peeling purposes. A tiny little space where I often met other patients partners and chit chat would follow. I was asked by one lady with an accent who had problems with my accent, "what's he in for?" ....er, that would be cancer. Then she started getting quieter and quieter in a Les Dawson fashion talking about her husband's liver cancer until I couldn't hear / nor understand her. So I took my orange segments, a cup of tea and left her to her cup of milo!
Scott snoozed, I read, Scott snoozed, I may have snoozed, Scott snoozed, I wrote emails, Scott snoozed....well Scott did a lot of snoozing and I did a lot of just sitting quietly. Yet each day, Scott got a bit brighter, a bit better , this was encouraging to see as he had been very unwell when he was admitted. Nurses popped in and out, doctors popped in and out, our children popped in and out , nutritionists and speech pathologist popped in and out. Food was constantly arriving. The ward cleaner popped in and out...I learned when to lift my feet off the floor at the right time and would have a wee chat with her each day.
Scott was discharged on Saturday morning ...Peter Mac threw us out on the hottest day of the week! Goodbye frozen ankles, farewell cardigans, no more oranges to peel as Woolworths ( supermarket) hadn't quite got my online delivery right...3kg oranges ordered , one wee sad and lonely orange delivered, 5 bananas ordered...4 yellow and one almost speckled black one delivered....the worst of
all though was a Cadbury Double Decker ( an imported treat) which looked like the delivery driver had kept it in his back pocket for safety! Squashed beyond recognition! Anyway ...email sent, refund given and a free delivery code too!
We had an appointment with our lovely, kind, gentle yet brutally honest oncologist yesterday
afternoon. He had been on leave whilst Scott was ill. So after I brought him up to date with our last 2 weeks, he brought us up to date with last Friday's CT report. It did not make joyful reading. It was as we expected but still shocking to be told. The tumour has continued to grow sizeably. The chemotherapy, which was always a palliative measure never curative, had not worked and had just succeeded in making Scott very unwell. Along with our oncologicist's advice , our children's agreement we have made the decision to stop actively taking treatment. Any further treatment would just result in Scott suffering from horrific side effects for very little if any gain. Nobody thinks that's an option.
So , we , as our little family of five, huddled in together last night .What was always inevitable is still inevitable. I feel reality is constantly tapping me on the shoulder, whispering in my ear. But we shall absolutely be living and loving and laughing together and making the absolute most of the time we have together.
#pants
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