Month: October 2017

After almost a week at home it was time to head back to the ward.  There was some confusion over the timing of this as initially on Monday morning the HITH team suggested that everything would be OK until Tuesday but a call in the afternoon indicated that the blood counts were dropping quickly and I needed to come in for blood tests with the possibility of being admitted Monday afternoon.

So once again we packed my bags and headed for the hospital for blood tests.  And as predicted the results showed the neutrophils had dropped below the critical 0.5 level – time for hospital.

The reason the Heam Team wanted me back in hospital was simply for observation during the neutropenic stage when I am most susceptible to infection.  They like to have you within their care so they can administer anti-biotics ASAP in case of a problem.

I was also given a bag of platelets (this helps with blood clotting) as they were dangerously low.  Apparently platelets are spun off from red blood cells (keep giving generously please).  And strangely enough after this and the IV Ambisome had finished I was completely disconnected from all tubes and pumps giving me a rare night without being ‘hooked up’.  I guess the benefit was that I could roll over in bed without tying myself in knots with IV tubes.

Tuesday’s goodies involved two units of blood to top up the red bloods cells (blood transfusion).

My new room in Ward 7B is on the northern side of a large open courtyard.  At the moment this yard is vacant but plans are underway to install an (artificial) garden.  Unfortunately they cannot build a natural garden due to the high risk of fungal and other infections for patients when walking outside.  Such a shame but that is the medical advice.  It is pretty bland, but at least has plenty of light.

Regardless of the room the care and support from the team is first class and there were lots of familiar faces to welcome me back for this next round.  This stay will probably last around 5-7 days.

The interesting thing is I feel very well with no temperatures/fevers, no pain and no complaints whatsoever.  In fact it is almost surreal.  I feel well and keep saying to people I am 99% well with just 1 (large)% sick – ie cancer!

The Beanie

I have had some terrific feedback on my Beanie with many people wanting one!  So in the effort to spread the love I am going to knit a second beanie (blues and whites this time) and will auction it off to raise funds for the Hospital.  Stay tuned for progress updates and rattle your spare change jars as I am hoping many of you will participate in a fun auction later in November when the beanie is done.

 

The last three days have been very peaceful and easy going.  Claire flew over from Perth for the weekend and arrived early on Friday morning – always great to see her!

My main task was to keep well and watch the blood counts.  When the neutrophils drop to 1.0 or below that is my calling card back to Hospital, as the medical team do not want me out and about during the neutropenic stage due to the possibility of getting unwanted infections that my body cannot tackle.   It only leaves drugs as the last line of defence.

At my regular Hospital in the Home visit on Friday afternoon my temperature seemed to be climbing as it was over 37.0 and the nurse seemed wary of infections and keen to package me off to hospital. However after the usual round of questions – are you well? Any pain? Nausea? Vomiting? Bowel movements OK? she was happy to leave me at home.

Saturday and Sunday were similar days with cold weather on Saturday curtailing the walks a little but a beautiful morning on Sunday allowing a walk and bike ride, followed by very gusty and windy conditions Sunday afternoon – not ideal for me to be outside, again due to dust inhalation etc.

We were lucky enough to have a few visitors over the weekend including Mike and Fi Rouch who have recently moved from Wagga to Melbourne.  Mike was in Docklands for shopping so called in for morning tea Saturday.  It was fantastic to catch up on their news and find out how happy they are living in Melbourne. And in the afternoon Claire’s friend, Lucy Collins,who is a graduate doctor  called in followed by Keita, Lachy’s mate from school.  Kate tested out my new modification to the beanie.  (Thanks to David Foster for pointing out the stitch error!)

My nephew Oscar Sheridan who is currently studying at Melbourne University visited on Sunday (I was expecting to be back in hospital) and we enjoyed some quiet family time.  Claire is looking to move back to Melbourne so was actively scouring the jobs on the internet.  She headed back Sunday night after a lovely family roast.

So despite the fact that the medical team thought I’d be back in hospital my neutrophil count seems to be hanging on giving me some more time out – bliss!

When I go back in it will be for about 10 days with no indication at this stage as to how I might feel or react to the neutropenic stage.

So life goes on – but this time at home which makes it so much better.  But of course as time marches on we end up moving into the next phase which will be back to Hospital for the neutropenic stage.

Hospital in the home (HITH) visited early afternoon on Wednesday and then mid-afternoon on Thursday.  I had a business teleconference on Wednesday morning (yes I haven’t forgotten how to do business) and then a meeting with our bank manager from Wagga on Thursday afternoon (who had driven down for signing of papers, and other meetings in Melb).

On Wednesday I spent some time making up a small model of the Partheneon which my lovely parents had sent me to help fill in time.  It was made from pressout foam/paper and fitted together in a few hours.

And today I started on the USA drug Midostaurin, which runs for two weeks.

The big news was finishing off my beanie.  I know there are many out there that are sceptical but finally (with some of Jan’s help) I managed to sew the edges together and don the beanie.

We also went for a bike ride in the afternoon  – a first for me for a while but Jan has been on the bike to visit me at Ward 7B over the past few weeks.  It was fun and such an easy way to get around so hopefully we will get to explore a larger area by bike over the next few days.

The time at home seems to have gone very quickly and it have given me the space to think about time.

Funnily enough I am not really busy at the moment with each day being filled with reading, listening to the radio and a few calls, plus some work on the laptop.  They say “time flies when you are having fun” or perhaps “when you are really busy” but in my case time seems to be going fast without either of these.  Although Jan does say to me that at the moment we could pretend we are on an extended holiday in Melbourne – nice and relaxing.

But what is time?  We all know that time is something that marches on, stopping for no one.  It is governed by the rotation of the earth and man-made atomic clocks, but for us it is more how we fit things into the space we have in front of us.

For me that space might be just minutes, hours or even days.  I tend not to look too far ahead although in the back of my mind I know I need to think about the longer term.  Without accurate information I believe I will be under care for at least 6 months but there is a possibility (in talking to others) that my treatment could go for more than a year, perhaps two.

So for me time is the space for my recovery, and this will vary from short term goals (maybe just a few hours or days) to the longer term. I need to use it wisely.

I am not focused on and tend not to think about ‘what will life be like after recovery’ as this is probably premature.

For those following the blog you may have noticed I didn’t make an entry yesterday.  That was simply because there was not much to report.  I slept reasonably well and the day passed without too much drama.  Fiona and Michael made another visit and then headed off to Canberra.

Monday night was similar with 6-7 hrs sleep in between observations, blood tests etc.

Tuesday was the day of excitement as it was my day to be ‘released’ to go home.  The nurses were all very enthusiastic about this and tried to get the IV drugs through the machine as early as possible.

However I was surprised to learn early in the day that my red blood cells were very low and the team  decided to give me two extra bags of blood as a transfusion before letting me out.  This was to take 4 hours.  Plus the Ambisome anti-fungal IV which takes two hours.

So I spent the morning and early afternoon until 3pm knitting away (learning how to decrease stitches today) waiting for all the IV drugs to go through the system.

Jan also brought in a great present from a mate in Sydney, Steve Duncan which was a new Akubra hat.  Steve was not happy about the small cap I am wearing!

I met a guy yesterday who has just gone through a bone marrow transplant (after 2 years of treatment – for a different cancer) and he was happy to tell me that plenty of things can go off the rails with transplants, as it had for him.

With that knowledge I asked the Heam Team what I was likely to be in for.  They were guarded with their response and said I was best to speak to the Transplant specialist – Amit Kot, who I have met just once, and hope to ‘start the conversation’ (as they say), soon.

So by 3.30pm I had left my lovely room on the 7^th floor overlooking Royal Parade and Grattan Streets and headed for home to unpack, potter and chill out – bliss!  In my absence Jan has put together a range of pots with a lovely kitchen garden full of herbs, lettuce etc on our balcony.

Unfortunately it will only be for a few days as the Heam Team would like me back in by Saturday or Sunday as my neutrophils drop to zero – leaving me in the neutropaenic stage and very susceptible to infection again.  They would not say how well I would manage this process second time around but on all accounts it should be a better experience than the first round of Chemo. The next stay will be for 10 days or so.

I also have another round of the rare but important drugs from the USA, Midostaurin which will start on Thursday and run for 10 days.  Interestingly a warning on the packet says don’t eat grapefruit or drink grapefruit juice when taking these drugs – apparently there is a conflict of enzymes when this takes place, as the same enzyme that breaks down the drug also breaks down grapefruit!

More in a day or so.

Last night went well again and the day has passed without too much drama.  Funnily enough this time around I don’t feel too sick and have managed to get more sleep.

The only real excitement for the day was changing the dressing on the Hickman line, which I have compiled as a photo essay below (warning – only for the brave hearted).  This happens once or twice a week subject to how it stands up to showering and general ‘wear and tear’.

The game of choice this afternoon in the Ward 7B Game Session was Celebrity Heads and the patients and staff seemed to get into it quite well.  My nominated person was Marilyn Munroe which I managed to nail after 6 or 7 rounds.  It was quite fun for an hour or so and a great relief from the routine of the Ward.

At today’s session I sat next to an older bloke, Rob Marshall who was in caring for his wife who is having a long battle with Cancer. As it turned out he is a farmer and near neighbour to us in Tassie.  Such a small world really – who would have thought.  We had a great chat about the farms in the Fingal valley and farming in general.

I also managed 4 sessions on the gym equipment with my sister helping out on the odd occasion.

I managed to watch the Wallabies overcome the All Blacks last night and it made me think a little bit about determination. The team certainly showed lots of determination in that game and it was so good to watch and not feel at any stage like they were going to give up.

Which brings me to my situation:

Determination is a big part of my journey.  Determination is defined as “Firmness of purpose -succeeding because of sheer grit and determination” and also very interestingly “the process of establishing something exactly by calculation or research” – very apt for the scientific approach my team have with my health.

There are times on this journey that you could easily say it is all too hard and look at the alternative of not participating.

However for me this is a foreign concept – I guess I am a fairly determined person.  Some might say this is one of my stronger traits.

I am determined to follow through on all the treatment.  I certainly do not feel sorry for myself or blame anyone for my condition.  It is what it is and it took me only a matter of minutes to accept this when diagnosed back in August.  For me it is all about the way forward.

I am determined to keep pushing through each day – no matter how slow it appears to be going.  I have found many ways to keep myself occupied.  Some have asked how many movies I have watched.  The answer is none, as with reading, listening to radio, exercise and knitting I haven’t found (or made)  time for movies.  It must be a low priority for me!

I am determined to keep in touch with family and friends and keep them informed of my progress – no matter how slow it is going.  Hence this blog.

I am determined to walk out of this hospital with the prognosis of a great outcome – no matter what that takes.

So like resilience and persistence, determination is a trait that in times like this comes into its own and helps with the recovery process.

Today was almost a repeat of yesterday.  After a good sleep (with the usual interruptions) I was on the treadmill early to get going.

Jan was back in around 8.30am but missed the early round from the Heam Team, who were happy with my progress.  One day at a time but they indicated I should be allowed out for 3-4 days from Tuesday afternoon.

I spent the morning reading papers and then rested up after lunch before the afternoon games session put on by the staff at Ward 7B – a new thing for the Ward.  About 6 or 7 patients turned up to play the games with a host of nurses.  It was lots of fun.

After that I had a surprise visit from longtime friend Dick Tallis.  It was good to catch up on family news.

During that visit my sister Fiona and husband Michael (Jan’s brother for those that don’t know the family story) arrived having travelled overnight from Bangkok where they live.

More news tomorrow but a few pics to finish off with.

 

Today was a pretty good day for the second day back on Chemo.

I managed a good sleep of perhaps 6-7 hours (in groups of 1-3 hours in between observations, blood sampling etc).  It is back to the hospital mantra that the patient comes first for the medical staff – and sleep comes second – they like you to be available for their requirements!

I did have one measurement of low blood pressure during the night (90/55) which was a first. It is usually 110/60.  What is yours?  If you are not sure off to the Blood Bank!

Here is a quick quiz:

How do you increase blood pressure?

(a) Eat more food

(b) Go for a walk/run

(c) T ake some tablets

(d) Drink more/re-hydrate

(e) Have an argument with your spouse

Answer at bottom of blog.

Surprisingly I still have an appetite so managed breakfast and other meals – mind you I’m on two different Anti Sickness drugs to overcome the usual nausea associated with Chemo.  They tell me they have come a long way in 40 years of managing cancer treatments for patient comfort.

Jan arrived early after her 30 min walk to the hospital and then Bev and Andy Irvine arrived for a lovely visit.  We had a great catch up on their recent move from Wagga to the south coast at Vincentia, and life in general.  Andy presented me with a lovely bottle of red wine but it will have to wait I’m afraid – still on the wagon.

On top of that we had a quick catch up with Mark Wallace and Kathleen Mathews from Wagga.  Mark is visiting Peter Mac regularly with a cancer issue at present but looks very healthy and is quite positive.  Lachy also popped in for lunch.

The rest of the day was spent sleeping, reading, knitting (coming along) and of course helping out the nurses with observations and changing IV drips.

I keep on receiving some lovely comments on the blog and emails (with pics) from friends which keeps my spirits high.

Quiz Answer:

(b) and (d) are correct although (d) is perhaps the best option!  Don’t try (e) – very short term!

Wednesday was D-Day for the CT Scan of my chest to check how the lung infection was progressing (or not as I’d hoped!).  The appointment was for 2.30pm but I was asked by Hospital in the Home to go to their office/rooms prior to that for the daily routine of changing the drip – saving money I guess as the nurses don’t have to spend time out and pay for parking etc etc!

So the 1.00pm appointment immediately turned into ‘ hospital time’ (I’d almost forgotten about it having been at home for 10 days or so) and I was eventually seen at 1.45pm.  This was OK but I was nervous about missing my 2.30pm appointment.

They finished what they needed to do at 2.30pm and that meant by the time I arrived at Radiology for the next appointment things moved along reasonably quickly (about an hour or so!)

I was hoping to get the results of the CT Scan that day but that was not to be.  We ran into one of the ‘Heam Team’, Suzi on the way to the Scan and she explained that they would review the material ASAP and probably give me a call Thursday morning.

Thursday morning arrived and I felt very well.  I’d managed to drop all the pain killers for the lung infection (a reasonable indication that things were OK) but I was sweating on the call from the hospital which came at around 9.30am – requesting that I come in ASAP for more Chemo – however as the HITH team were on their way to do the Ambisome IV changeover I had to wait for that first.

Once the HITH team arrived (around 11.00) and changed the IV drip it was almost lunchtime so Jan and I decided to have one last home-cooked meal (ham and pea soup this time) prior to heading back to the hospital.

I was holding back getting ready which Jan immediately picked up on and I explained that it was the same feeling as leaving home to go back to boarding school – just a moment of angst and sadness before arriving back where everything slotted into place.

We were back in the hospital by around 1.00pm to be surprised by the news that I had been allocated room 15 – the second best room on the Ward, in terms of views.  Previously Chrisitian Lealliifano had sent me a message saying Room 16 was the pick – as it has a lovely view down Royal Parade and Elizabeth and Gratton Steets.

Well room 15 is pretty good and I was happy to unpack there.  Funnily enough Bev and Andy Irvine had sent me a lovely book which I received on Wednesday titled “Windows of the World” – a collection of short stories by writers describing their view from the ‘work office and window’ together with lovely drawings of the same by the author/presenter.  Bev told me she spied the book in a shop and immediately thought it would be perfect for me, given my last window views – what a nice thought.

So here I am back in Ward 7B re-joining the same routine for the ‘Consolidation’ round of Chemotherapy.

In a strange way it seem sort of comforting!

And as a special bonus I got a surprise visit from an old friend, David Sackett.  It was good to catch up on his news.

Monday and Tuesday have been great days with more visitors and very little to report on the medical front. My lung condition continues to improve and the pain subsides. I’ve been sleeping well and managing a few good walks during the day.

Best to post a few pics to describe the last few days.

This weekend was uneventful in terms of my health.  The HITH nurse turned up each morning  and changed over my IV drugs (Ambisome for the treatment of my lung infection), completed the observations and mountains of paperwork and continued on.  My coughing has virtually disappeared and my sore chest appears to be improving – slowly.

Over the past few weeks Jan and I have given some thought to how one might reshape the hospital system – which currently seems to be based more on what has happened in the past than what could be achieved today with modern technology.

For example the observations that have to be taken such as blood pressure, temperatures and oxygen levels.  Why couldn’t a clever young bio-medical engineer design a body worn or perhaps ear mounted sensor that collects this information at whatever interval required and automatically transmit this information to the nurses’ laptop or tablet?

And the endless pieces of paper for observations and records of drugs, etc.   Why can’t this information be captured and stored electronically?  This would save lots of time and improve accuracy.

As I spend more and more time thinking about the hospital system I keep on designing in my mind ways of improvement – from a patient or client perspective.  stay tuned.

Back on track the weekend ended up being quite a social one.

Good friend John Preddy (who originally advocated in Tassie to shift me to Melbourne) flew down for the weekend for a catch up.  He arrived in Docklands at about 9.30am on Saturday and flew out Sunday 3.00pm back to Wagga.  Unfortunately John had left his mobile phone behind but managed to borrow his daughter’s phone when she put him on the plane.  This caused a bit of confusion but we all managed.  I’m not sure John kept up with all Al’s Facebook and Insta messages over the weekend!  John is pretty easy going and it was great to see him.

John Preddy flew down from Wagga for the Weekend for a good catch up.

Graham Lean – ag consultant from Hamilton called in Sat arvo for a cup of tea and quick catch up.  We last saw Graham in Tassie a few days before we took off to Hamilton Island for the sailing and all was quite normal back then – how the world can change – and quickly!

And then Saturday night we had a lovely dinner at a snappy Italian Restaurant, top end of Collins Street with Geoff and Karen Daniel, and their daughter Kate, Lachy and John Preddy.  The Daniels were down for business but also to see the “Book of Morman” so the early dinner suited everyone well.  Not long after we sat down who should we spy but Anne and Bernard Hart from Junee coming in for dinner – small world indeed.

I think my friends were all surprised that I looked so well and was able to leave home for a dinner out!

Sunday was another social one as we drove John out to East Malvern to catch up with a friend but stopped in at Eden Expresso Café for a coffee (well chocolate thickshake for me – no coffee or alcohol for over 6 weeks now).  Jed (the owner) and Tessa Hawkins his sister were there as well as Wagga local Imogen Scott and all were on for a good chat.

After that we motored down to Sandringham yacht club to catch up with Jan’s brother Dreamy, his partner Heather their kids, Maggie and Jack, and Heather’s father Geoff and step mother Anne .  They were there to watch Ned in the sailing races.  Not bad for Ned as a 7 yr old to be competing with a neighbour’s son of 15.  They seemed to be doing well but it was difficult to pick one boat from the other on the bay unless their spinnakers were up.

After a nice lunch at the yacht club we drove back to Docklands for a well earned snooze (hard work this socialising!) and then a lovely Sunday afternoon walk around the Yarra river.

This week leads up to a CT Scan to check on my Lung infection and then back into hospital by Friday for more Chemo – Round 2 – Consolidation.