Article for AML News

I had been waiting for this day since Friday.  It was my day for the Bronchoscopy which was to determine if I do have a fungal growth on my lung.

Fasting is essential for any procedure (I don’t know why they don’t call it an operation as it involves a light general anaesthetic). However, fasting for me is easy as with the nutrition coming from the IV drip there is nothing to change really.

The morning was spent with a few exercise rounds and on one I met up with Sean on the treadmill as I jumped on the bike.  Sean is a long time CIL patient (CIL being a very slow growing leukaemia).  He has been in and out of here for 15 years and has just had his bone marrow transplant.  He said it went well but he is not looking forward to spending the next 2 weeks here – especially as this will put him here for the Grand Final.  He’s going to ask his doctor if he can have a few cans of mid-strength that day to celebrate!  Sean works for a large Geelong based earth moving company and is hoping to be back on his excavator by February/March.

So apart from sleep and general rest in the morning (and 3 bags of platelets in preparation for the procedure) it was a waiting game for the transfer trolley.  When they did arrive it was all systems go, as they have their time-slots downstairs and certainly want to get you through.  An orderly from the theatre takes you down with a nurse from here keeping a close eye on the records and the tubes.

Going through the standard pre-op questions such as allergies, feeling sick, false teeth etc we discovered a massive problem.  I was chewing gum!  WTF it is just gum!

It just so happens that Jay, the anaesthetist, is a specialist on the topic of gum and has written medical papers on it. He said “You have not been fasting – chewing gum produces gastric juices in your stomach and is worse than drinking water.  We cannot operate!…….OK, give us a minute and we will discuss the options……..  Yes, we can operate but there will be no GA you will have to do this all under local anaesthetic.  We use a local spray for your throat and insert the camera and tube down there to the lung, it’ll be a little painful but has certainly done by others and there will be no anaesthetic risk.”

“I’m up for it, let’s go!” was my response.

So 45 mins later I get wheeled back out into recovery having full awareness of what went on in the operating theatre.

Not a nice day but at least that one has been ticked off my daily plan. And best of all Jan was in my room when I returned upstairs.  The lovely Dr Jess also popped in to apologise about the gum mis-communication.

One day at a time! Today has been another of rest and sleep.  Although I did not run a temperature overnight I had a trouble getting much sleep once again due to the huge number of tests, checks and interruptions.

There is good news in this if you look hard – the doctors tell me that the return of the blood cells and general haematology health does not correlate to the amount of sleep you get.  And their solution is “The best place to get sleep is at home!”  Wise words but not so helpful when you are in here for a month or more.

So no extra platelets (current count 20) and Red Blood cells (Cound 85) with WCC 0.1 and Neutrophils 0.  These are not expected to lift for another few days at least.

So given my obvious interest in planning I have been asking myself the question is it possible to plan in hospital and is it worth the effort?

Apart from the obvious step of one day at a time there are other attributes of planning that have helped me each day,

A standard thing is to set a long term goal and then break it down into small manageable chunks that can be easily tackled on a day to day basis.

My long term goal is to return to full health – simple.

But there are a number of aspects of this that I have absolutely no control over – I am totally in the hands of my medical team.  So putting these things to one side, there are only a small number of things that I do have control over to help me reach my long term goal.  There is absolutely no point in me worrying or spending time on the matters that are outside my direct control.

So the 4 things I have some control over are:

1. My nutrition (to a point)
2. My mental well-being and positive attitude
3. Support from Family and Friends
4. Physical wellbeing

Although I started working on the first to the best of my ability, the team found an inflamed small bowel was preventing me maintaining the right nutrition and moved me on to the IV (TPN) solution.  This has removed nutrition from my control.

Mental well-being is a pretty straightforward.  For me this is keeping a positive attitude at all times, no matter how down you might feel.  You can always imagine someone who might be worse off than yourself and by keeping the mind active with things like this Blog, reading, listening to the ABC radio, watching the odd back episode of The House or Utopia I can keep myself occupied and positive.  However these things have to be planned into each day – they don’t just happen.  The whiteboard in the room is quite useful for planning these things.

Family support has been very very strong.  As you know I had my complete family here for the first week and this was of tremendous benefit.  Having encouraged Dougall to return to the US and Claire to Perth I now receive daily calls or messages to see how things are going.  Lachy comes in most days.

Jan has been absolutely fantastic.  She will be here from 8.00am to 8.00pm if needed and always comes with clean clothes and bed linen for me (I have my own doona and pillows).  She is also there for every discussion and concern that I might have and is also a star at sorting through this blog and reworking the “Chemo Brain” gobbledegook prior to posting!  (yes it is a joint effort here!)

And the fabulous support my friends have provided me either through texts or the blog (and the odd call when I can take them) of course makes a huge different to my mental wellbeing.

Exercise is important for any recovery program and it would be much easier to simply sit in the chair than pull the runners on and get out there.  For this I have a strict plan of 4 sessions each day at 6.30/10.30/3.30/6.00pm.  This is on the whiteboard for me to follow.

So in conclusion planning is important in hospital and for the very limited things I have some control over, applying good planning principles should help me achieve my long term goal.

Today I thought I’d outline the routine that has pretty much become my life in Royal Melbourne Hospital.

Midnight – This is blood collection time and observations (blood pressure, oxygen saturation, heart rate and temperature).  Subject to a high temp (febrile) extra blood is collected to make up cultures for testing for viruses etc.  This includes taking blood directly from a vein in the old fashion way – more needles and a slower process compared with the Hickman where they simply plug in the tube and turn the tap to fill the tube with blood – no pain and nice and quick!

2-4.30am – This is generally sleep time but if carrying a high temperature it is almost impossible to get sleep as the body heads towards sweats and the mind moves into hallucinations. I might get another hour of broken sleep.  At 4.30am more observations are taken.

4.30 – 6.00am – Generally reasonable sleep for this period.

6.00 – Waking and thinking about Goals for the day. Dressed into the sport attire (singlet, light jumper plus some long johns) and head off for a few hot laps around the Ward or if really keen back on the treadmill for 20 mins.  Pre the IV nutrition I’d grab some food from the community fridge in the common room, but now the IV delivers all so pass on that one.

7.00 – 8.00am – Crank up the blog or perhaps listen to a podcast.  I might even read a little.

8.00am – Jan pops in having walked from Docklands (around 40 mins).  This has become a highlight of the day, even though we see so much of each other. Jan has been bringing in some home made raspberry cordial – yum!  Cleaner usually comes in to sweep then mop the floor. The water man changes the waterjug.  The top up man checks medical supplies.  The linen person takes away old towels and renews bed linen if requested. Oh yes another knock and it is the menu lady asking what I’d like for tomorrow?

9.30am (ish) – Visit by the medical team – usually 2 to 6 doctors.  This team meet 8-9.00am each day to discuss the program for their own patients and start their rounds.  This visit can take up to 45 minutes subject to the number of questions we have.  The doctors know to expect lots of questions from Jan and me.  At one stage the lead consultant made the mistake of asking me to challenge him on decisions and suggestions – exactly my cup of tea.

10.00am – Shower time!  Highlight of the day.  This can take almost half an hour by the time you wash, dry off and do the bits and pieces.

10.30am – time for another set of hot laps around the ward.  And then another top up of platelets or red  blood cells if required.  This is usually every second or third day, depending on fevers.

11.00 – 1.00pm – Quiet time for rest, sleep or reading.

1.00pm  Lachy might turn up with some lunch for Jan,  Chat for a while.  My lunch tray will turn up but usually with very little on it given I am on IV supplements.

2.00pm  – more rest and reading if possible although multiple visits from nurses and others wanting to provide information or get information from you.

4.00pm  More observations.  Sleep and or rest.

6.00pm Dinner arrives but given I am on IV nutrition I don’t need anything extra so it generally is wasted.

6-8pm Family time reading with Jan or chatting.  She will normally head home around 8 pm and I will watch an iView episode of The House.

8,30 – 11.30  Best period of the day for REM sleep for me.   Usually get 2-3 hrs.

11.30  Awake getting organised for blood tests and the midnight routine.

Today’s Blog is dedicated to good friends David Foster and Colin Duff.  We have spent many a ride on a chairlift discussing philosophical topics such as life, death, fun and of course happiness.  I’ve always preferred to discuss these sorts of matters rather than run through the footy or cricket results.

This question is one that I have thought about quite a bit since being in hospital.  On the face of it someone with a life threatening condition such as leukemia probably has no reason to be happy – sleeping in a strange place, a strange bed.  Strangers looking after you every day.  Timeframes that probably are more akin to the 1940s than modern day and a bunch of pain and processes that you could never dream of.

But strangely enough there is room to be happy:

• I am alive
• I get to see my family most days (in fact for a week every day which is probably more than in one stint than the last 5 years!)
• I am very well cared for.
• I know I am loved by my family (and also by a huge range of friends)
• I love my wife and she loves me
• I have the very positive prospect of a full recovery.

What more could someone wish for?  So on balance if you weighed up these facts and emotions it is easy to see that Happiness is possible in Hospital.

But let’s explore the theory behind Happiness.

Researcher and world renown Psychologist Martin Seligman has written extensively about this topic and believes happiness is a state that can be managed.

And delving deeper we can experience three kinds of happiness:

1) pleasure and gratification,

2) embodiment of strengths and virtues and

3) meaning and purpose.

Each kind of happiness is linked to positive emotion but in his mind there is a progression from the first type of happiness of pleasure/gratification to strengths/virtues and finally meaning/purpose.

Seligman and his researchers were surprised to find 6 particular virtues that were valued in almost every culture, valued in their own right (not just as a means to another end) and are attainable.

These 6 core virtues are:

1. wisdom & knowledge
2. courage
3. love & humanity
4. justice
5. temperance
6. spirituality & transcendence

 

It is the pursuit of these virtues in a meaningful way that leads to our own happiness.  Seligman points out that happiness is not found overnight.  It is a lifelong commitment.

• The pleasant life: a life that successfully pursues the positive emotions about the present, past, and future.
• The good life: using your signature strengths to obtain abundant gratification (through activities we like doing) in the main realms of your life.
• The meaningful life: using your signature strengths and virtues in the service of something much larger than you are.

http://www.pursuit-of-happiness.org/history-of-happiness/martin-seligman-positive-psychology/

 

And in pursuing the stated virtues one can easily conclude that spirituality is key.  And for those that are in any doubt although I have stated I am not a religious person I do believe I am spiritual and that in a funny kind of way spirituality has become my religion (sans a God!)

For me I can boil this information down to just 3 simple steps for Happiness:

• Something to Do
• Something to look forward to
• Someone to love

Oh I nearly forgot.  How’s my health?  No complaints today.  Very few tablets to try and ingest as most drugs are now delivered by IV.  No heavy meals to try and force down as the nutrition is now also being delivered by IV. No high temps last night, a reasonable amount of sleep over night and a pleasant day of R & R reading the paper with my lovely wife next to me.  Silent bliss!  Happiness you might say!

This is actually the half way mark of the first phase of my return to health.  Although it is Day 18 since diagnosis it is actually Day 15 of my 28 day treatment cycle.   This is a great milestone.  Not knowing how this whole process would proceed I am very happy that I have made it to this point (one day at a time as they say).

Having had a very ordinary night with high temperatures and substantial abdominal pain I was looking forward to a quiet day – this was not to be the case.

The Doctors were in early for the usual discussions but today they came bearing ‘gifts’.

However before they delivered these gifts I said I thought that I, Dr Geoffrey!, had worked out the reason for my high temps (39.5 last night) and abdominal pain.  Yes, in my medical opinion it had to relate to an infection or some sort of disturbance in my gut.  With the amount of abdominal pain experienced during the night there could be no other answer.

The Doctors said “You are partially correct!!!  We are concerned that you have an inflamed and sore bowel and this has shown up on the CT Scan from yesterday”  They wanted to know if it was more pronounced after eating which at that stage I could not answer – more on this soon.

“However our greater concern is the white mark the CT scan found on your lower right lung.  We believe this is a fungal growth (perhaps from soil born particles) which under normal immune conditions would not be a problem but in your Neutropenic stage will most likely be multiplying leading to the temperatures and other issues” We will be ordering a biopsy – and you will have to fast – more good news!

And we need to talk to you about nutrition. It would appear that you are not keeping food in your system (with constant Diarrhoea) so we want you to talk to an IV Nutritionist.

This was magic to my ears– in fact even pleasurable in a strange way. Up until now I had been forcing small amounts of food down but this was uncomfortable and wasted.

After the doctors left I battled through a shower but my abdominal pain continued to build to a high level.  I promptly threw up when back in bed.  This was the first time I had vomited and it brought instant relief, Pain leading to Pleasure.

The Doctors left having ordered a lung Biopsy hoping it would happen later today.  “You will have a visit from a respiratory consultant to talk through the procedure”

Sure enough people starting knocking on the door and explaining how they could help.

 

And then the Respiratory doctor arrived (I didn’t know these guys existed until I met Adrian Ventner at Sailing Week) took considerable time to talk me through the lung procedure. Radial EBUS – Endo Broncho Ultra sound which sounded very complicated with lots of tubes and probes in your lung but similar to a colonoscopy done under amnesiac sedation and given I’d previously had one of these I was much more at ease.  Harry the registrar did say that it would not happen until Tuesday as they only performed these procedures on Tues and Wednesday!  I’ll have to let my Doctors know this fact!

 

 

We often read or hear about people who are told by their doctors to get their “affairs in order”.

Thankfully this advice has not come from my doctors but as I could be sick for quite a while Jan and I have taken a few moments at an appropriate times in the last couple of weeks to review our situation.

I guess I have now been run over by my “bus” that everyone hopes will not strike them but as we all know it could be just around the corner! Live every day like it might be your last would be a great motto (within consideration for all those family men!)

Ever since we married and had children we have always kept Wills and these have been updated from time to time most recently with the help of the wonderful Tammy Holzheimer at Commins Hendriks.

A simple thing, but it is amazing how quickly things change with children growing up etc whereby your current Will does not really stack up too well.  We last updated our Wills in 2014 and a quick read with Tammy revealed all was still in order.

Next to be reviewed were the Enduring Guardianship and Power of Attorney documents.  The Enduring Guardianship document gives Jan the power to make medical and lifestyle choices for me if I am unable while the Power of Attorney is more about making business decisions on my behalf if I do not have the capacity.

We also touched on the bigger discussions re death and what life might look like in the future for Jan.  Although we spent some time on this I won’t go into too much detail as at this stage my condition is not considered to require urgent attention in this area.

The final thing was a string of discussions with our Melbourne Lawyer, Rob Jeremiah of Sladen Legal.

Rob has helped us set up family trusts and the like over the years and is a guru in the area of protecting assets and ensuring that they are passed on down the family line.

We discussed the notion of bringing the children into the mix.  His first question was “Will they be hostile?”  I think he had visions of Gina Rinehart’s very public battle with her children over family assets.

Having allayed any fears about our family’s relationships we agreed to restructure our family trusts to give us a little more flexibility going forward.

As for my day in hospital, pretty much a repeat of yesterday with a high temp and more drugs and one bag of platelets and two bags of red blood cells (Lance eat your heart out).

Another thing on the agenda was a body CT Scan looking for signs of infection and excessive fluid that might be contributing to the high body temps.  This took up most of the afternoon.

Oh and a special visit from my older brother Tony who had flown in from Canberra for the day.  We chatted about general matters and I gave him an overview of where I am up to.  I think he was originally shocked at how sick I looked but after a bag of blood, a shower and a shave I had perked up somewhat which allowed him to leave with a more positive picture of me in his mind.

Today was pretty much a repeat of yesterday and based on the “one day at a time” theory I am doing pretty well.  Temp spiked just once to 38 degrees.  The rash on upper torso is still very obvious but not annoying (and no Poppa, the nude pics will not be forthcoming).

Today involved another long visit from the medical team with some slight adjustment to the drug regime. And another bag of platelets (to get the count up above 20).  Best of all, a visit from a lady to go through the paperwork on applying for a “Disabled Parking Permit”. No need to walk long distances in the city any more – I wonder if it will apply to Tassie and Wagga?

So I have had plenty of time to go through the mountain of emails and special photos sent through by friends and have uploaded a few to share. These photos and associated messages have been up enormous support for me – Thankyou!

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From a health perspective last night and today have been pretty good.  Temps touched on 38 for a while and fevers were less than previous nights.  The visit from the medical team seemed to be much shorter than on previous occasions and the best news was the lumber puncture (analysis of spinal cord fluid) revealed that the Leukemia had not progressed into my brain (what a huge relief!).  An upper torso rash from antibiotics has prevented me from sending naked photos but there does not appear to be any other side effects.

Feeling a little better, I started to explore the option of improving the visual sights outside my room with a garden.  The Unit that I am in (7B) is very new (in fact only a year old) having being built on top of the original hospital (circa 1940s) as the best way of modernising the upper levels (would anyone think that the process of reinforcing 4 lower floors and continuing construction with a hospital full of sick patients would be a good idea?  Steve Butt might have an answer?)

Anyway as Clinical Nurse and outpatient adviser Peter Hayward said to me there will be more than a few times when you would notice the difference (and benefit) of being located in a regional hospital – things just seem to happen more quickly.

For example at my 9.30am medical consult the doctors decided to that I needed yet another (Anti) drug to combat a bout of thrush.  This is an oral lozenge similar to a Strepsil – 4 times a day.  But getting hold of this is not so simple.  The order has to be faxed (yes I am serious – faxed. A carrier pigeon would be quicker!) to the hospital pharmacy and processed before it can be picked up by my nurse on duty.  If the first few days of my arrival one order took more than 2 days to be processed as the fax machine had not been working and no one had detected this!  So 6 hours later my little lozenges are still stuck in the fax machine!

Back to the garden.  We have now managed to move through 4 layers of bureaucracy to get to some decision makers to see if it would be possible for the facilities team to upgrade the view immediately outside my window.  I’m sure you would appreciate Jan and my mutual love of all things beautiful – gardens, art, sculpture and nature in general.  My task was now to convince the facilities team that they could do something inside this century and make a difference to my life whilst I reside in the hospital.

So we managed to come up with two plans – a short term option involving some kinetic sculptures and a longer term one with an atrium style garden and possible butterfly enclosure (totally beyond the comprehension of the planning team – but one that might just work).

At one stage I briefly mentioned we would be happy to make a contribution to the hospital to help with these works and within 15 minutes the lovely Sandy (complete with corporate Red Jacket and lots of jewellery) arrived to discuss gifts to the Hospital Foundation – tax deductible of course!

Anyway that is underway and even if it costs a few $$ I am sure it will make a huge difference to my overall well-being (and hopefully everyone else in the ward as well, including the staff room next door).

The other night I started watching the footy match between Port Adelaide and the West Coast Eagles.  Most people know I prefer rugby but my interest in this game was centred on my son’s (and family’s) friend, Dougal Howard who had finally made the run on team after a year of injuries.

The first Quarter was pretty intense and Dougal made several good plays.  Unfortunately I fell asleep before the epic final Quarter and extra time but by all accounts it was one of the most exciting finishes to a game!

When the coach of the losing team is asked what the plan is moving forward, it is typical in post-match interviews for coaches to say “we will take it one day at a time – we need to re-group and work on our basic skills and rebuild the team”, they are reluctant to be drawn into looking too far forward knowing that anything can happen.

And so we turn to Leukemia.  My marvellous medical team (sometimes up to 6 doctors in total) will visit for the post-match debrief around mid-morning.  They want to know about sleep, toileting, fluid intake and most importantly body temperatures.  My book of charts and observations gets thicker each day.

In this debrief I often ask “and what is the prognosis moving forward” to which they answer “we will just take it one day at a time!  We have to slowly return you to health and this is a steady process.  We cannot predict too far out but we know if we manage the temperatures as they occur, and the rashes as they show up (sometimes by swapping drugs or adding another) then we can be assured we are moving in the right direction”

As with top quality footy coaching my medical team knows how to respond to the data that they are presented with.  They review the ‘videos and statistics’ and come up with their plan to move forward, and I have 100% confidence in their every move.  The team includes the Haematologists (head coach) and then the registrars/residents( junior coaches) plus three different nurses each day, physios and of course the Pastor!

For me my role in this game is to follow instructions (believe me I can when it is essential to do so) and take in one step at a time.  Often that might mean focussing on the next 15 minutes or 6 blocks of 10 minutes to see the next hour though.  Rarely do I let my mind take me past the 12s on the clock ie. Midday and midnight.  My aim is to make it through just one day at a time to help rebuild the player- base for future success!

Nurse Emma changes the Hickman caps ready for the next 2 bags of red blood cells NB The Xmas tree (top centre of shot) is empty!!! It’s a rare moment not to see at least one bag of something hanging on it.

The first week of intense chemotherapy involves 2 drugs in what is called the HIDAC-3 protocol . The aim of this two-pronged attack is to remove all the cancerous blood cells from your body. However, these chemo drugs cannot distinguish between the good blood cells and the bad and so both are eliminated by the chemotherapy.

In order to keep you alive until your bone marrow starts producing blood cells again, the doctors need to top up the red blood cells and the platelets . Otherwise, with limited red blood cells, you cannot transport oxygen around the body leading to hypoxic-type symptoms (think of the benefits Lance Armstrong gained from additional red blood cells). Platelets stop you from bleeding to death from things as simple as a blood-nose.

One of the major effects of the first week of chemotherapy is your neutrophil count drops to zero. Neutrophils are a subset of your total White Blood Cells and are your first line of immune defence.

After the week of Chemo you then enter what is called the neutropenic stage. This lasts until the bone marrow has produced enough neutrophils to get back in the normal range again. During the neutropenic phase you are highly susceptible to viruses, bacteria and other infectious agents. This is why isolation and hygiene during this period is so important.

 

During the neutropenic phase I will be getting a new drug flown in from America ( more on this later).

The medical team also start injections of G-CSF – a compound which stimulates the bone marrow to start generating blood cells. This is injected just under the skin on my stomach once a day.

The aim of the G-CSF is to kick start the blood cell production system again, hopefully the good white blood cells will out-number the nasty cancerous blasts. There is some uncertainty as to how quickly the good white blood cells will reproduce and whether they will be able to compete effectively against the cancerous ones.

During the neutropenic phase, the so called ‘chemo brain’ cuts in. I also regularly experience high body temperatures with associated hallucinations during limited periods of sleep.

The doctors aim to support you as best as possible throughout this neutropenic phase, knowing that each day will be a rollercoaster of emotions and wellbeing – with a constant risk of infection. For me, it is one day at a time, making the most of the energy and positive vibe that I receive from all my great friends and family. Stay tuned for more.

(it’s important not to take yourself too seriously, no matter how bad you’re feeling)