Month: October 2017

 

Thursday and Friday have gone very well.  I have been home both days and nothing out of the ordinary has occurred with my well-being.  The HITH nurse has arrived around 9.00am on both days and has gone through the standard checks of blood pressure, oxygen levels, etc with the standard questions re pain, eating, drinking etc to check that everything is normal, prior to hooking me up to my antifungal drugs via a portable pump . This visit takes about an hour.  The HITH nurse has 4 or 5 other visits for the day with me usually being the first one.

 

The rest of the days are generally filled with reading and recently doing a few handyman jobs around the apartment.  We managed to walk to a nearby Bunnings today to purchase a few bits and pieces to fix a few things.

And of course each day I make sure I have enough time time to read the various emails from friends responding to my blog.

This is one aspect of my illness that was totally unexpected but greatly appreciated.  I set the blog up to keep people informed of my progress in a timely fashion.  The alternative was to try and respond to phone calls, texts and emails giving people similar information.  To me this was going to be a huge workload for Jan (who was taking the calls) or frustration for me not being able to respond to all the messages.  (I hate not returning calls or emails).

As it has turned out the Blog has worked well – keeping people informed and allowing them to respond either publicly through a comment or privately through an email.  Some prefer to phone from time to time and, when I can, I take the call, although that is often limited by things that are happening at the time (Nurse changing IV drip or meeting with the Haem Team etc).

It is very humbling to know that I have so many friends (and family) who are happy to follow my progress and who feel that in some strange way the blog has helped them understand their own lives and situation.  It is probably my philosophical musings on topics such as happiness or resilience that have kept people engaged.  But whatever the topic I have had some marvellous feedback.

And it is the feedback that has strangely become important to my recovery process.  Some friends write just a few words of support yet others will write a page or more of support or analysis of my last blog, relating this to their own lives – and these ones I will read three of four times  before being stored away.  John Hawkins, Andy Irvine, Geoff Breust and Paul Murray are just a few who have penned long responses – I love them.  Others prefer to phone in to let me know how things are going in their lives, which is fantastic, when I can take the call, and the welcome distraction from the medical happenings.

People are surprised that I am happy to share my thoughts as I move through this strange process, but for me it is a way of sharing ideas with others.

I love the feedback that I get, and when I think about it everyone loves feedback.  Whether it is a child growing up looking for feedback from their parents/teachers or people in a workplace.  Feedback is something that makes a difference and although it takes some thought and energy it generally does not cost much.  Studies have shown than positive feedback is often better for work moral than a bonus.  Who would have thought?

So for me I am grateful for the feedback and although I don’t consider myself a social media junkie I am happy to read the comments as they come in and are very appreciative that people take the time to do so.

As I’ve said this is an important part of my healing process and certainly keeps me very positive, which I know has a massive impact on how one responds to medical treatment – thankyou!

 

Yesterday and today have certainly been a roller coaster of expectations and occurrences.

The focus on Tuesday was getting organised to leave the hospital on the “hospital in the home (HITH)” program.  This took most of the day to organise and by 4.00pm I had finished my IV medications and the take home drugs had been delivered – so home to Docklands we went (again).

The interesting thing was what happened overnight.  My temperature increased slowly and breached the 38 degree febrile mark by 10.30pm. The HITH nurse on duty checked with the doctor and the message was hang in there and monitor the situation again at 12.30am.

At 12.30am my temp was just over 38 but given I wasn’t feeling sick we decided to stay at home and see what the morning would bring.

Temps were just over 38 degrees at 5.30am so I threw down a couple more Panadol  and waited to see what might happen.  I had some very light diarrhoea but was not too concerned about this (somewhere between 5 and 6 on the stool chart!!- I am learning a lot!!).

The HITH team came fairly early around 8.30am and set about their business with observations and checks.  They hooked me up to a small pump for IV drugs which were to be delivered during the middle of the day (delayed setting).  The two nurses from HITH were on site for about an hour by the time they got things organised.

When they rang through to the real hospital and reported on the temps and diarrhoea and things went down hill.  The Doctor at the HITH section (completely different to Ward 7A) wanted to go through my condition step by step which we did.  She then consulted with the Haematology team who called for blood tests and another chest X-ray.  They were worried about complications with infections showing up due to the diarrhoea or maybe a worsening of the chest infection.  This process took a few hours and after the X-ray and  blood tests were done they wanted us to hang around to get the results which they said they would put through in record time – less than an hour.

We went to our favourite café (The Loft) on the 7^th floor of the Peter Mac building and then to the Meditative Space on the Ground Floor of the Peter Mac building and waited for a phone call.

Once summoned back to the HITH rooms at RMH we were met by Dr Zhi from the “Haem Team” who checked me out again (second thorough examination that day) with the message that due to last night’s Temps she would like me to come back in to Ward 7B overnight.

So we headed back home to pack the bags and returned to the Ward 7B by around 4.30pm where a bed had recently vacated (they are usually filled within 2 hours of someone leaving the Ward!).  We were asked to see Dr Zhi again before I was admitted, she said the lead consultant was a bit more lenient and felt I could stay home!  However we needed to wait for him to discuss this with us and he was in a meeting for another hour.

Luckily Jan had begun to teach me how to knit so out with the knitting and away I went to fill in the time.

Dr Ashish the lead consultant eventually turned up and talked through the situation.  He was in two minds about me going home but given there was a bed in the Ward he felt it might be safer to stay in.  The alternative was to present to the Emergency Department in the middle of the night if the temps increased dramatically.  This would involve a 3 hour wait for admission and no guarantee of a transfer to 7B at all.

Having made that decision Dr Ashish went to advise the Nurse in Charge  that I was staying only to find out that my bed had been allocated to another patient!

So we were left with no option – home it was (not such a bad option anyway)!  The lead consultant was very good about this and in good humour saying plans always change around here.

So after spending the majority of the day in the hospital (despite the fact that I am actually discharged on the HITH plan) I was finally back Continue reading “Week 6 – Tuesday and Wednesday – Still going with the flow!” →

The weekend has been quite relaxing with the exception of Sunday night. With the ability to go home at night time I have found that I have been much more relaxed.  It is difficult to get a good sleep in hospital but at home it is much easier to sleep.  On both Friday and Sat night I was able to sleep for about 7 hours – without a sleeping tablet – so that is good news. I am still having periods of night sweats but without high body temperatures – a sign that my immune system is fighting the lung infection.

My blood tests are showing great results at present with the Red cells around 114, White around 14, Platelets around 500 and Neutrophils around 10.

Sunday night threw me a curved ball.  At 8.30pm I developed a significant pain in my lower chest (lining), which was obviously related to my lung infection.  Taking Panadol did not make much of an impact on the pain so by 9.30pm (after Doctor Blake’s Mystery Murders) we headed back into Hospital.  Within 30 mins I had been administered Endone – a strong pain relief tablet.  This made a huge difference and also helped with sleep – I managed a good sleep over night, with additional Endone in the early morning.

I was lucky to have a few visitors over the weekend including Suz Shearer from Echuca.  Suz used to run training programs with me back in the Training Improvements days and we’ve kept in touch every since.  She and her husband Brad run Coolibah Turf – a massive turf farm with 25 staff and 7 refrigerated trucks.  They supply turf to Bunnings in Victoria.  Suz is full of life and one of those doers you meet in life who just gets things done.

The other visitors were Matt and Robyn Kibble.  Matt’s dad is in RMH with a number of medical conditions but at 81 he probably has an excuse.  Matt built a number of the childcare centres for us in Victoria during the ABC development days and then moved up to Kununurra to build our apartments at Freshwater.  He is still building childcare centres in Victoria – seems like the demand is never ending.

So with home leave over the weekend I have only been required back in hospital for a few hours during the middle of the day for the IV drugs.  And from today back in Ward 7B full time until they get on top of the chest pain, which might be a day or so before I am released home full time for a week with ‘hospital at home’ care to administer the IV drugs once a day primarily to get the lung infection under control.  That should be nice.  However I am realistic and timeframes and the situation seem to change almost daily so I will go with the flow.

As with my last stint at home I’ll write a blog every few days as there is not a lot happening on the medical front.

Today has been one of fluctuations.  I started connected up to multiple IV drips but by the middle of the day all had been disconnected.

This is because the medical team have changed their plans to some extent.  The anti-fungal drug that they need to manage my lung infection (Aspergillus fungal infection) is best treated with an IV drug called Ambisonne.  And the medical team want this infection to be well treated prior to administering any further Chemotherapy.

With this in mind the main focus of the drugs is to attack this fungal infection and all others are merely to keep me in good health.  And given there is only one dose of Ambisonne daily they believe I can be released again for 10 days or so under the “hospital at home” program where a nurse visits daily to help out with the IV medication. With the decision made then it is a matter of waiting a day or so (even more) for the team to put this into action.  This starts with a visit from the hospital at home doctor, then the hospital at home nurse, then the pharmacist who organises the drugs. Nothing happens quickly in hospital so there is a lot of waiting around.

Which brings me to resilience.  What  is it and why is it important for my situation?

Resilience can be described as the ability to manage through the tough times – to bounce back from adversity (it’s a pity our children are not taught this more often – we seem to only focus on keeping everyone happy rather than acknowledging that tough times exist for all of us and our children).

And for me the tough times are either the process of working through the cancer treatment or more often the extreme amounts of time just waiting around for the next dose of IV drugs without anything in particular to do.  So how to you keep on top of things?

To be resilient you need to be strong.  You need a positive attitude and the ability to keep going when you encounter small setbacks.  You need to be able to adapt well to change.

You must accept reality (in my case stuck in Hospital longer than I would think is necessary).

You need a deep belief in the outcome and have to back this up with strong values.

You need to be able to improvise.

So if I think about the main thing that requires my resilience at the moment it would be the potential boredom of waiting in hospital when I don’t feel particularly sick and require just one dose of IV drugs per day to treat the fungal infection.  I am used to being busy and keeping busy on a day by day basis – there is rarely any waiting around in my previous life.

So how do I handle this?  There are several things I have found that help me with resilience and to a certain extent is involves learning new behaviours, thoughts and actions.

I avoid seeing this issue as insurmountable – I am realistic.  Time will cure this if managed well.

I acknowledge that the overall condition has and will cause a significant change in my life with adjustments required.

I set goals that are realistic and based generally on daily or sometimes hourly timeframes.

I take a positive attitude towards the recovery process (generally optimistic).

I value and keep my connections with family and friends, which helps me with the resilience process.

Hopefully tomorrow I will get to return to home again for another week or so.

Stop Press:  Since writing up the blog this afternoon I have had another visit from the medical team to affirm that the “home hospital” release won’t happen until  Monday.  However Dr Jo has thought innovatively and has worked out a plan to release me over night and perhaps during the day, given that I only need to be on site for the Ambisonne for a period of 2 hours or so around about 6pm each day.  Yipee this means I can check out overnight and go and sleep in my own bed tonight as long as I’m back at the Hospital by 10.00am.

You will have noticed I have gone for a new numbering system for the days as I have literally lost count of the days but the weeks are strong in my mind.  I hope you can follow.

Having spent the night in the old section of the hospital, in Ward 5N, it was almost a relief to return ‘home’ to Ward 7B – the nice new ward where I spent the first month of my treatment.   This happened by about 2pm  this afternoon.  There were many more familiar faces and certainly the staff know the Haematology procedures better than the 5N staff. (Incidentally Ward 5N was the original haematology ward before the new one was built!).

I have ended up in the room immediately next to the original room I occupied during my first stint of Chemo, and the view out the window is much the same apart from the addition of a large pillar right hand end of the window!

As I now know things can change each day, today’s news is that the resolution of the lung infection is going to take priority over the Chemo consolidation phase.  So in a nutshell this is going to add another 4-5 days of treatment to the plan advised yesterday.  In the scheme of things not really relevant but still a little disconcerting as I had planned only 5-6 days in hospital this time around – it has now turned into 10 days.

Luckily I had just received a text message from a young man who went through a similar treatment last year – Christian Lealiifano – the ex Wallaby back.  This came about through David Thomson’s daughter Gemma and her Brumbies boy friend James Dargaville, who thought a message from a Leukemia survivor might cheer me up.  His key points were the ups and downs of the treatment process.  One day you are going well and the next you might get some bad news that you have to deal with. Many thanks to Christian, his contact meant a lot to me and thanks also for the Thommos for arranging it.

So today has been another day of waiting around for drugs and trying to rest up, but as you will remember it is not that easy to rest when in hospital,  funnily enough.

And a surprise parcel arrived from friends Leigh and Andrew Williams which brightened up the day, many thanks!

Today was the big day to find out the results of the Bone Marrow Biopsy.  We had an 8.30am appointment with lead consultant John Seymour and left Docklands at 7.45am to combine this with the morning walk (only about 5000 steps) but weaving through interesting parts of North Melbourne.

John’s consulting room is in the new Peter Mac building and is quiet spartan (without any windows or views) but adequate.  And funnily enough he had a different room originally with a view down Elizabeth street but found his desk orientation would not allow him to interact with his patients in his chosen manner! This says a lot about the man.

John’s opening lines were “all your tests are good” but he did not elaborate on this for some time asking me if I felt ‘normal’.

The big news came out slowly that the Bone Marrow Biopsy showed a low count of Blasts (less than 5% – 2.8% in fact) which means officially I’m in “Remission” from the Cancer.  All my other blood counts were in the normal range or higher.  Remission does not mean cure, it just means they can’t detect the cancer at the moment.  Cure is a long way off!

However with that news came the timeframes and process from here which is basically:

5-6 Days of Chemotheraphy

4-5 Day home

10 days back in Hospital during the Neutropenic stage (they will nuke all blood cells again just to be sure).

Another Bone Marrow Biopsy to check on these latest results.

And then up to a month at home waiting for the Bone Marrow Transplant.  I don’t have the details on this but I believe it involves more Chemo and IV drugs and then close monitoring after the transplant – possible another 3 weeks in hospital.  This will be revealed in due course.

If that goes well then there will be 3 months of visits to the hospital for checks 3 times each week.  This defines the minimum period of time I will be in Melbourne to 6 months – maybe more.

I gave John some extra details on some shoulder pain I had been experiencing for a few days and despite no high temperatures he seemed concerned.  So concerned that he ordered an immediate CT scan of my lungs – thinking the pain was pleural pain (referred pain from the lungs).

This involved getting ourselves to another ward in Peter Mac and the usual hospital wait before being put through the CT scanner after an IV injection of contrast medium.  The actual procedure was no more than 10 minutes but the 1.5 hrs prior was just written off to ‘Hospital Time’.

We left the hospital and enjoyed a lovely birthday lunch for Jan at a nice restaurant in North Melbourne (Lachy made it as well).  She received lots of lovely messages from friends and family plus cards to help make here day.  Her old Wagga book club buddies even rang to sing Happy Birthday.

And following a quick nap at home Lachy drove us down to Williamstown for another Drone session in a large park, away from crowds and CASA restrictions.  This was so much fun that even Jan had a go at flying the Drone.

When out flying John Seymour rang with the CT Scan results of the lungs and left a message to contact the ward.  The news was they wanted me to start some IV antibiotics to treat my lung infection (read pneumonia) ASAP and to make arrangements to come into the hospital today (rather than tomorrow as planned ).  This seemed OK but unbenown to me Ward 7B was full and a bed was found in another Ward – involving a whole new admittance procedure and enough questions and forms to sink a battle ship.

So my Consolidation phase of Chemo is likely to be put back a few days while they focus on the infection in my lungs.  More details tomorrow.

Dear readers – I don’t have much to report other than I am still out of hospital and enjoying being at home.  The days seem to whizz by but I’m not really counting anymore.

On Monday I was required to go back to the Peter Mac hospital for a blood sample which was pretty straight forward.  The wait was only 30 mins once I had cleared my paper work so for a pathology lab that is pretty good (anyone who has tried a fasting blood test will find big queues of similar people at their local pathology lab – just waiting to get it over with and have some breakfast!).  The good thing about the Hickman line is no needles are required and it is so quick to extract the blood – straight from the heart.

Jan took me on a little shopping excursion that morning to look for some new household items missing from our ‘home’.  Lots of walking – about 10,000 steps with a few items purchased.

Also today Jan framed and I hung the drawings done by Ned (7), Maggie (7) and Jack (6) Sheridan to remind my bone marrow what it should be producing. The kids drew these images after checking out the info on the Haematology 101 pages of the blog. Thanks guys, I see these every time I get up out of bed.

Monday was a glorious day weather wise so Lachy took me back out for more drone lessons – on the pier just west of our apartment.  Things were going pretty well until the Drone lost its GPS signal (luckily only briefly) and it wandered off track. The only problem with flying the drone in Melbourne is the lack of good open space.  I managed to get a few good pics of him skating on the old Dockside area of Docklands.

 

 

Tomorrow is the big day (test results from the Bone Marrow Biopsy) so I will make sure I report in.

PS.  I received a lovely Penguin book in the mail today titled “A Confederacy of Dunces” it came direct from the Hill of Content Bookshop, but no name or sender details  – if anyone knows anything about this – many thanks!!

Since my last blog time has moved on pretty quickly.  We have been lucky to have a few visitors pop in including David Foster (Down for the Footy grand final) and ex neighbours Steve and Jenni Butt and Harry and Min Youngman from Hamilton.  On top of that my parents have been in Melbourne for a few days with regular visits to our apartment. (They chose to return to Cootamundra on the Sat night XPT but found it was 1.5 hrs late in leaving – getting them in at 3.00am.  Not bad for 80 year olds!)

 

On one day I walked (or my parents walked me) over to the Melbourne Star (the large viewing wheel equivalent to the London Eye) for a scenic view of Melbourne.  I think my parents were more fascinated than me but then again I get a similar view most times we fly into Essendon.  When our cabin reached the top of the arc we had a clear view back to our apartment in Docklands and I texted Jan to wave the red flag from the balcony.  And believe it or not we could see her from the Star clearly (probably only 1.5kms away).

Most days have entailed sleep, eat, rest, eat, eat some more and reading or TV.  Very restful really but despite all the eating I have not been able to put on weight, maintaining a steady 77.0 kgs which is about 8 kgs less than my normal fighting weight.  This is the weird thing prior to my illness I had to watch my food intake carefully as I’d easily add 1-2 kgs after a week of ‘ good living’.   Now I am having 8 or so meals a day including protein thick shakes and smoothies and not putting on weight.

All that I can conclude is that my body is soaking up all of the nutrition for repair.

Saturday morning I had trouble with the dressing on my Hickman line (the cannula to the heart) and had to call Ward 7B for instructions.  They suggested I came in ASAP for the dressing to be changed, which resulted in a great outcome, 2 hrs later.  Not bad for hospital time!  I tried to get my results from the Biopsy but the nurses were not allowed to release this (even if they have it), so unfortunately it will be a wait until Wednesday when I see my consultant John Seymour.

Sleep has still been a bit of an issue, although I seem to be averaging 6 hrs a night with a few breaks. The 4.30am wake up has been a constant although now with Daylight saving this bumps it to 5.30 which is much more respectable.

Lachy has been down in Tassie this weekend and is bringing Jan’s car back on the Spirit of Tasmania, Sunday night.  We took the opportunity to give him a long list of things to bring home such as clothes, hats, a few documents, a painting and my bagpipes!  I reckon if I can play the bagpipes I’ll know I’m almost cured!

So at the moment life is pretty good.  I am comfortable at home, Jan is cooking me lots of lovely meals, we’ve had a few visitors and I’m resting up for the next round of Chemo.