Article for AML News

The doctors had advised me that generally the first week post transplant is OK and it is the second week that things get interesting (well they say you get sick!)  And completely in line with this plan the Freight Train smashed into me on Wednesday and was still dozing me along the track on Thursday.

The tell tale sign is a fever – temperature over 38 degrees followed by diarrhoea and aches, pains, even shortness of breath.

For me it was the diarrhoea first, then severe pain in my throat.  My mouth has begun to form ulcers but as this stage they are under control.

Today I had two units of blood and one of Plasma as both counts were getting very low.

My appetite has crashed and although I can drink fluids my sore throat restricts this to small windows after drugs.

So what are the Drugs?

Apart from the original 6 they have added IV panadol, IV Fentanyl (similare to morphine really), IV pethidine  and oral cocaine mouthwash.  I now feel that I am legitimately supporting Melbourne’s drug cartel!

I have been upgraded on the Main Line connectors moving from a 3 way tap to a ‘chooks foot’ system which can take up to 8 different IV lines.  This is to take multiple IV drugs simultaneously.

The cocaine mouth wash is interesting as once you swirl it around in your mouth it certainly takes the edge of the pain.

On top of that I am back on the ‘Uber Eats’ IV drip nutrition – mainly because I can’t swallow much at all.

The medical team seem pretty relaxed about it all.  As Joe, one of the interns says, we measure everything and there is a protocol that follows.  Pull one lever here and push another over there.  It all works out in the long run.

A few nice surprises came my way over the past few days.

Lachy bought me a second hand guitar to get me underway with guitar lessons – a big challenge there but I’m up to it.

Phil and Mandy Locke sent me a very challenging jigsaw puzzle which may have ot go on hold until the chemobrain clears. John and Jodie Coles sent down a fabulous game Kalaha or various other names around the world as each of my nurses says they grew up with it.  So far 2 draws one win one loss with Jan!  Much better than Bananagrams I think!

Phil also managed to dig up some old photos from our European backpacking days in the 1980s – I certainly had lots of hair then!

Sparky our family pet has been air freighted with ‘Jetpets’ from Launceston to Melbourne as Lachy feels he has plenty of space in the backyard of his new rental (and of course will walk her daily!). Dougz was very happy to collect her from Tullamarine this afternoon. Lets hope she slots into City living like we have. A big thankyou to Knox and Cate Heggaton for playing babysitter – you are both wonderful!

The last two days have been another waiting game.

My neutrophils have finally dropped to 0.0 which is a good sign in terms of my final recovery.  I expect to sit on 0.0 for at least 10 days – maybe more. During this time I’m out of bounds for visitors, other than family, due to the risk of infection.

The slow train wreck is not far off.  My mouth has started to get a lot sorer with some ulcers forming.  Eating is still OK but a little painful.

Diarrhoea has finally come home to roost which is entirely expected and unfortunately part of the process.  It could last for a week or more!  Not pleasant but just another thing to push through (so to speak!).  The medical team take samples from each episode to analyse for infections.

The Doctors have told me that I will develop high temperatures (with blood cultures required to analyse this) and I will be treated with antibiotics as a precaution for infections.  It is slightly unfortunate that the young registrar, Steve, passes on this information with a grin and slight laugh.  I am sure he has seen it all before but I might have to have a little chat on ‘bedside empathy’.  I’d rather someone pass on this information in a more caring way!

I have set myself a regular exercise regime with 4 lots of a minimum of 20 minutes on the treadmill or the bike throughout the day.  This has been going well as I often get going early and knock out 40 minutes on my first session just to stay ahead of the game.  I can give myself a tick if I achieve the target of 80 mins for the day and a double tick if I have ‘over achieved’ which I have done for the past few days with around 112 minutes in total ( see the right hand column of the board in the picture above).

Unfortunately during this morning’s session the Treadmill gave up the ghost with a puff of smoke and a nice electrical smell!  I have been assured that the electrical team have been advised and they will put the request through their Triage system to prioitise the treadmill repair. Knowing hospital time it will be out of action for quite a while so I’ll have to move over to hot laps of the Ward and time on the stationary bike.

My daily routine is plodding along well so far, with lots of family visits and playing cards as part of the passing of time.  We are getting quite good at 500!

For me it is simply one day at a time!  No great future plans, no dwelling on the past just focusing on the moment as each and everyone ticks by!

This weekend has been one of anticipation.  I have expected my neutrophils to drop to close to zero, and by Sunday morning they were O.4 – not quite there yet!

I had been under the impression that the doctors were looking for signs of sickness.  However I have been under a misconception.  It is common for this to happen, mostly with a sore mouth and throat with ulcers.  The gastro-internal tract usually suffers as this is made up of fast replacing cells that usually suffer first when the cellular reproduction system is interrupted with chemotherapy.

The majority of transplant patients would find that after 3-4 days they cannot eat and swallow food and move over to IV nutrition and on demand Morphine self administration.

However in my case I appear to be OK so far with normal eating and drinking.  It may be a few more days until these symptoms appear or not at all which would be highly unusual.  I have been waiting for the freight train to knock me over and it still may be coming but just hasn’t arrived yet.

Jeff Szer stated that the post chemo illness is no indication of how well the graft has taken.  The best indication is the recovery of the neutrophils.  This will take approximately 10-14 days from ground zero.

So given a weekend of not feeling all that sick I have managed to spend a little time reflecting on past activities and life in general.

I have approximately 100 photos of family and friends plastered around my room and have been cataloguing these and writing a story about each one in a diary.  This gives me the fantastic opportunity to look at the wonderful things we have done as a family and of course with special friends.  It ranges from family Christmas get togethers, to skiing trips, golf with mates and of course special business occasions with Michael and Kate McConachy.

My take home message has been that I certainly have had a fortunate life so far and do not regret one moment at all.  If I could spend my last 55 years again I don’t know if I would do anything differently – probably just try and squeeze a little bit more of the same in!

Perhaps we should all make some time to reflect on our past and think about achievements and our life in general.  It may open the way for changes or alterations in the future or simply reinforce that you have been on your chosen track.

Day 2 Post Transplant (PT) was an interesting one.  In the main I have felt OK although today I was very tired and managed two sleeps – one before lunch and another post lunch (for about 2 hours).

It is a strange feeling as at the moment I am feeling reasonably well but the doctors keep telling me I will ‘fall off the cliff’ in a few days.  I have made the comparison with being in jail as time is ticking by slowly and I don’t have much freedom – other than a few laps around the ward and then back on the treadmill again!

However the care, compassion and empathy by the nursing staff certainly leaves you with no doubt that you are in the right place – jail would be a distant second!

To keep myself engaged I have broken my daily routine up into 30 min slots with time for reading, exercise, knitting, listening to the radio and podcasts, sleeping and eating.  On top of that I am very pleased that my family can still come and visit, usually for a few hours in the morning and then again in the afternoon.  We tend not to do much, other than maybe a game of cards or ‘Bananagrams’ but just sitting around together is sufficient.

Today I was lucky to receive some goodies in the mail, including a box of lovely Belgium chocolates from our Belgium friends Nadine and Gino Bockaert.  I also received a 100 pound cheque from English friend Richard Buer, having made a late wager on the current Test series.  I think Richard still has two or three of my cheques pinned to his toilet door back in England from previous Aussie failures.

My neighbour Tyrone, the 18yr old with AML is due to be discharged in the next day or so.  Tyrone was on a similar timetable to myself but due to my lung infection/kidney problems my treatment was postponed and his went ahead prior to Christmas,  He has spent two weeks on the IV nutrition drip with neutrophils of 0.0 but at least they have started to climb again – something for me to look forward to.

More news tomorrow.

I was unsure how today would pan out post transplant but as it has turned out everything has gone very well.  I have not had any major complications or reactions but have felt tired and lacking some energy.

As for my donor brother he tells me things have gone well with just a little tiredness and no major reactions.

So for me it was a quiet day in hospital getting used to my new routine of exercise (4 sessions a day of around 20 mins each on the treadmill) and reading, listening to podcasts and the radio and sleeping.  This will go on for weeks so I need to manage a good routine.

However I jumped the gun this morning by launching onto the treadmill by 7.00am only to be reminded by a near neighbour that the house rules state 7.30am is the earliest start.  I apologised profusely and headed back to my room for half an hour.

Today’s line up of drugs included the cylosporin immuno-supressant and a dose of the Methotrexate (MTX) chemotherapy which is used to help manage the graft vs host disease. The MTX works by impacting on the activated T cells from my donor, reducing proliferation and induces tolerance following the transplant.

So for now it is managing eating, sleeping and the mental challenge of knowing a freight train is coming my way but it is a few days off!

I will keep you posted.

My donor brother, Tony and his wife flew down from Forbes late on the Tuesday afternoon and were picked up at Essendon airport by Dougall on his way back from a few days water skiing at Echuca with friends.

Tony dropped into the hospital for a quick catch up prior to the big donation day today. He also made his last injection of the growth factor for the stem cell production.

He was up early today for a swim in the Melbourne baths prior to arriving at the hospital at 8.15am,

Tony hooked up to the machine

Plasma on the left, stem cells in the right

For him the process was straight forward – one line in each arm and then an extraction of red blood cells, plasma and the all important ‘Tequila” coloured stem cells.  The red blood cells and plasma were returned to him once the stem cells had been removed.

Early on the in the process the medical team took a blood sample to check on the saturation of the stem cells in the retained fluid.  This gave them an indication that in the five hours of the process they would obtain sufficient blood cells for my transplant.

The aim was to collect 5,000,000 stem cells per kilo of my body weight.  To do this they have to cycle almost three times his total blood capacity of about 5 litres through the machine.

Chris Cabot dropped in during the morning for a good old chat on aeroplanes and all things aviation. And we had a surprise visit from Andrew and Beverle Irvine who are in Melbourne at present house sitting for a month.

Then followed a long waiting game.  Tony was taken off the aphoresis machine after just over 5 hours.  We had to wait a further two hours before the stem cell tests were completed.

And when the news came in it was all good – Tony had produced 20% more stem cells than I needed (he always was an overachiever).  This allowed the team to take off a sixth for freezing and further use if required.

Tony and Katy stayed around for the initial transplant procedure and then headed off to the airport to return to Canberra where had a vehicle needing to be driven back to Forbes (tomorrow).

Tony you are my hero!  Thankyou so much for your kind and loving donation – it will save my life!

On my side I did not experience any significant reactions during the transplant which was a huge relief. No nausea, no headaches or pains.

From this point on we wait and watch…….one day at a time!

Thankyou so much to everyone who sent wonderful wishes this week – your support has meant a lot to me, and to my family.

The interesting thing about a Bone Marrow  Transplant (BMT – almost like a BLT!) is that they don’t transplant the marrow but simply the stem cells that will create the marrow.

The work up (read chemotherapy) for the Transplant finished yesterday with the final drug Melphalan that is designed to kill off 95% of all my blood cells.  There is a significant lag between administering the drug and the depletion of the cells – which all seem to be hanging together at the high end.  My neutrophils will drop to 0.0 in the next couple of days but for the time being have jumped up to 6.1 from 2.2 – a last gasp in response to the chemo but there are no cavalry following up – they will die!

My Haemoglobin has gone south already and has dropped below the critical 80 mark – so two units of blood for me today.

We had a good meeting with the transplant co-ordinator Siobhan Mineely who talked us through the next 100 days and beyond.  The first 100 days after transplant are critical where the medical team will keep me immunosuppressed with drugs and they’ll watch the blood counts very closely.

My brother Tony is now on his was down to Melbourne, kindly flown by Chris Cabot in our plane, the C510 Cessna Mustang.  Chris has collected Tony and Katy from Forbes and will fly direct to Essendon – taking about 1 hour.

While speaking with Siobhan we explored the blood types and compatibility of Tony’s blood.

His blood type is not the same, he is Type A while I am Type O, in time I will take on his blood type! (who knows if his personality will come with it!)

However it was determined that the match of Human Leucocyte Antigen (HLA) was ideal, a 10/10 match.

The HLAs are collections of proteins of the surface of cells called Anitgens.  They are important for the correct function of the immune system and are important for the body to recognise itself – ie. to kill off any unwanted cells that are a threat and leave the good ones – we don’t want the organs to be attacked (too much at least).

There are many HLAs which are divided into two main classes.  Class I antigens are responsible for displaying that a cell is infected by displaying the virus outside the cell and Class II warns the immune system of a new virus in the body.

The other critical thing checked with the donor is their Cytomegalovirus (CMV) status.  75% of the population are CMV positive.  Luckily we both tested positive to CMV so the matching is even better.

So for now I am waiting on my 20 hour infusion of cyclosporin immune suppressant drug and then I will be ready for the big day tomorrow!

The weekend in Melbourne was a good one with a few visits from friends and of course my friends from HITH for the on-going chemotherapy.

Friday night’s BBL cricket at Etihad Stadium was a great spectacle, although I thought the half time entertainment was the best part of the evening.  Ex Wagga boy Jackson Strong demonstrated his skill with a double backflip on his motorbike onto an inflatable down ramp.  See the video!

On Saturday afternoon we enjoyed a catchup with Mike and Fi Rouch, who made it in to Docklands to check out the Volvo Around the World Yacht Race.  We enjoyed a quiet G & T.

I developed a rash on my forearms but this did not seem to worry the medical team and popping a few anti-histamines seemed to make a small difference.  In any event it did not get much worse.

My brother Tony started his injection regime for the G-CSF (Granulocyte- Colony Stimulating Factor that helps produce extra stem cells for the transplant).  This involves two injections a day for the 4 days leading up to transplant.  The injections cause the Haemopoietic progenitor cells (HPCs) that are found in the bone marrow to ‘over produce’  from his bone marrow and spill into his bloodstream and they will then be harvested from the blood stream via a process called Apheresis (a centrifugal blood cell separation process). Thankfully scraping the marrow out of the bones is not required with this new process!

Tony’s stem cells are needed as the chemotherapy kills off all of my healthy blood producing cells (HPCs).  Tony’s healthy HPCs will be transfused into my body to replace the destroyed cells.

I was required to be readmitted to Ward 7B on Sunday night. The Ward manager had me down for room 3 (near the blank wall without garden or sculptures) but in chatting to her we managed to negotiate and upgrade to Room 15 – the old room that I had on my third visit to the hospital.  Room 15 is the second best room on the Ward in terms of view and aspect with a lovely view down Elizabeth Street.  The nurses told me it had the best view of the Melbourne City fireworks on NYE – the penthouse where I will spend the next 3-4 weeks!

The Penthouse suite – Room 15

Being New Year’s Eve I managed to negotiate overnight leave from the Ward, given that I was feeling well and had no complications from the chemo so far.  This was only granted after waiting an hour or so to see a doctor for a thorough examination.

This was a great relief as it meant I could see out the old year (and happy to have it behind me!) at our apartment and see the spectacular fireworks.  It was a special night and although there we no big parties involved Jan and I spent some special time together with a bit of time to plan things for 2018.  For me it was simple – one day at a time!

So it was back into Ward 7B early on New Year’s Day to set up my room.  Blood tests followed and the normal checks that the nurses go through – temperature, oxygen saturation, pulse and blood pressure.

In a sense it was like returning to an old routine and home with many familiar faces in the nursing staff and doctors.  My new Transplant consultant is Jeff Szer who is a legend around this place.  Apparently Jeff was the visionary behind the new Peter McCallum Comprehensive Cancer Centre and is highly respected.  We had a few jokes prior to discussing my case – although he did acknowledge he knew a fair bit about me from my Blog!  How many consultants would take the time to read a patient’s blog?

Today’s chemotherapy is Melphalan – a quite aggressive drug that knocks out all remaining blood cells including those in my bone marrow.  There is no going back from here!  It almost feels like Trump pressing the N button on North Korea!

I have been given a more intense anti-nausea drug (Aprepitent) as well to cater for the side effects of the Melphalan.

And before, during and after this dose I have to suck on ice to cool down my mouth and gastro internal tract.  This has been shown to reduce the level of Mucositis which i will suffer from later in the week.

So far so good!

It is with great relief that I can say that so far the chemotherapy treatment is going very well without any nasty complications.  The medical team tell me that nausea and vomiting are the most likely side effects but so far I have managed to avoid these.

The HITH team (nurse and doctor in separate cars!) visited again on Friday to infuse the Fludarabine and check on my health.  I could report no nausea, no shortness of breath, no pain, no aches, sleeping well, eating well and all toileting functions normal (standard questions) plus temperature (36.6), blood pressure (100/55) and pulse 68.

I can only hope that the bone marrow transplant goes as well, although I am preparing myself for a much rougher ride.

In fact the routine visits are going so well and seem to be down to routine that I can even carry on a phone conversation during the treatment – although on Friday I did have to delay a business Teleconference an hour due a clash with the HITH visit.  There was no need to involve the nurse in my business dealings!

I had a surprise visit from Richard Tallis on Thursday morning which happened to co-incide with the HITH visit, that included the weekly change of the Hickman Dressing.

And Claire had one of her chemical engineering buddies, Priya Khanna around for a chat.  We spent most of the time discussing the Prelude FLNG project that these young women are working on with Shell.  Priya has a fly-in fly-out job working on the Prelude facility and was full of engineering stories that kept Richard and myself engrossed in the world of natural gas.

Dick was also in awe of Priya’s golf handicap of 4!! She is a force to be reckoned with!!

The massive Prelude FLNG project is anchored 300kms north of Broome in the Browse basin

On Thursday we spent a lovely afternoon with friends George and Serena Chirnside from Wallington near Geelong on a chartered cruise boat touring the lower Yarra past the Docks to Williamstown and out into the very choppy bay to Station Pier.  We passed some massive boats.  We hadn’t seen these guys for a year or so and had a fantastic catch up while enjoying a quite ale.

The Volvo around the world race was in Docklands for a week’s layover

I have to send this blog off now as we are off to Etihad Stadium to watch the Melbourne Renegades vs the Perth Scorchers in the 20/20 Cricket match.

Today is the day that my (hopefully) final round of Chemotheraphy began.  This was delivered by the HITH (Hospital in the Home) team during the morning.

What was largely different from this visit from previous visits was that the drug is considered to be cytotoxic with extra precautions needed.  The nurse administering the drug, Michael had to gown up and wear a face mask and eye protection in case of a spill or problem with the drug – it is very toxic!!

The drug is Fludarabine and was only about 55mg which took around 30 minutes to administer under a gravity (coat hanger) drip.  This drug like the previous chemotherapy drugs is designed to kill off all blood cells.  Both the White Blood cells and neutrophils will start to drop off in count by the end of this week.

The major side effect of this drug is nausea.  This was expected to present soon after the administration of the drug, although being on a three times daily dose of anti-nausea tablets I am protected somewhat.  I do have another backup anti-nausea drug just in case.  Luckily I did not feel any nausea during the IV transfusion.

I have also had a new cocktail of oral medication prescribed with one new medication to protect the liver from side effects of the chemo.

On the social front we had a great time over Christmas with firstly the Hamilton get together last week and then Christmas day with the Sheridan family at Bairnsdale.  We stayed two nights with Jan’s parents ( my first night out of Melbourne since late August) and enjoyed some quality family time and of course ate far too much!

The good thing for me about the festive season has been that I have managed to put on a few extra kilos to provide a buffer during this next round of chemo and the Bone Marrow Transplant.  It is likely that I will end up with a few side effects including loss of appetite so I might shed a few kilos as I did previously.

I will have 5 days of Fludarabine administered by HITH and then will be admitted back to Ward 7B for the final two days of chemo prior to the transplant.

Thankyou to everyone who has sent me special messages of support for the transplant.  I really appreciate your contact – it means a lot to me.