Article for AML News

Today the medical team led by Andrew Roberts delivered some special news.  My WBCs have continued to climb and are currently at 5.0.  On top of that the Neutrophils are 3.0 – which technically puts me back into the ‘normal range’ so I am out of the neutropenic stage. Andrew was very happy with this progress!

However there is always good and bad news in this game.  Over the past two days I have experienced two bouts of severe nausea and vomiting which has taken me by complete surprise.  This has lasted for some time and of course has made be very cautious about food!

Because of the high counts the doctors have come up with a plan for day release for me tomorrow for the afternoon – this should be wonderful- finally after a month a few hours at home.  They won’t commit for the discharge date but it is likely to be in the next 2-3 days if things go well.

The only major complaint I have is that I still feel very ‘washed out’ and have trouble keeping my thoughts together.  This is pretty much as it was in the early days with chemo brain – not being able to concentrate on anything for more than a few minutes and having trouble sleeping.

As part of preparation to get me home the doctors have to move me off all the IV drugs and onto oral drugs.  Not so bad for most of them but the capsules of Cyclosporin are huge and take a bit of getting down (just like the USA Midastaurin drugs).

Anyway things are moving slowly and I will keep you posted.

Claire here again but after today’s Blog I may no longer be the favourite child!!

A few quick updates . The last 24 hours has been quite eventful.

Yesterday the Bone Marrow Transplant team decided to give me a shot of G-CSF which promotes growth of the stem cells. This is the same injection that Tony had to promote stem cell growth in the week leading up to the transplant and the doctors were hoping this would stimulate neutrophil production as they had been sitting at 0.1 for a few days.

In addition to this, the team decided to take me off all my intravenous drugs and TPN (food) as I am able to take drugs and food orally again. During the course of the day I had all my drugs in tablet form and managed to eat quite a bit after significant encouragement (harrassment?) from my darling wife.

Everything was going ok until I had a wave of severe lower back pain hit very suddenly around 4pm. The pain was so bad I got shaky and sweaty. To help with the pain I had a top up of pain killers and some hot packs. After a while I took a hot shower and then the pain relief kicked in and I could sleep.

However, then I had a sudden wave of nausea followed by my second vomit since diagnosis 5 months ago. Maybe it was from the hospital soup but more likely it was because I had gone from no oral drugs to the full suite in a single day.

This morning, after a good sleep thanks to a double dose of zopiclone, I vomited again after another round of oral tablets and breakfast. As a result I am back having the majority of my drugs intravenously.

The good news is that my neutrophils are at 1.0: TEN times the levels yesterday, so the G-CSF has worked its magic and my bone marrow has been running like the cryptocurrency markets (on a good day). The other good news is that the back pain was due to the neutrophil production and not something more sinister and it has disappeared today.

The not so great news is that my Hickman Line has suffered some damage due to five months of wear and tear. One of the two main lines has a small puncture and can no longer be used. As yet I am unsure whether the whole line will be removed and replaced with another Hickman or a Pik line or whether the damaged system can stay in place just blocked off.

Other than that I have spent most of the day sleeping and playing a few games with Jan and Claire as well as my usual hot laps and bike riding.

STOP PRESS The pain team have just dropped in to remove the pain patch which should mean I’ll be clearheaded and back writing my Blog tomorrow

I slept well last night and the good news is the team thinks I will be out in 3-4 days time which seems amazing given I still feel pretty ordinary and quite drowsy.

It is expected that there will be a big turn around in my Neutrophil levels over the next few days. My throat is feeling a lot better so I am taking most of my drugs orally again.

I am still getting some pain relief from a slow release patch (think nicotine patches) on my right shoulder. This is the only opioid I am receiving now which is good because I have really not enjoyed the headspace that the opioid drugs put me in. Along with the fatigue I have been feeling confused and anxious due to the number of thoughts circulating over and over in my head. Often I was unable to articulate them or describe them which was frustrating. Happily, that is slowly starting to fade now but I am still feeling very sleepy.

On the upside, I have received two bags of blood today which might pep me up a bit due to higher oxygen carrying capacity. After I am released I may continue to receive blood products for quite some time to supplement the work of my new bone marrow as the transplant usually focuses on regenerating the immune system before generating the other blood cells.

My favourite child Claire is visiting given that it is the Australia Day long weekend and is today’s guest blogger. There is lots of activity in the ward with families and kids visiting patients which brings a bit of excitement. Isn’t it great to see so much controversy about Australia Day – let’s hope some of those politicians (Lamb etc) take advantage of the ceremonies being held to be naturalised!

Speaking of lamb, I am back eating again but only small snacks like little pots of yoghurt, the soft middle out of white bread rolls and small bowls of soup – not quite up to an Australia Day BBQ just yet!!

Wishing you a fun long weekend.

Neutrophils still at 0.1 today, which the Doctors say is a good thing as it means there is no major infection in the body that the Neutrophils are needing to gear up for. WBCs continue their steady climb, up again today at 0.4.

The nurses have a regular set of questions which they ask every time they do my obs-  Any shortness of breath- No, Opened your bowels today- yes and the diarrhoea is back though not in a major way, What have you eaten today- baby food for breakfast, Ensure protein drink for morning tea, pasta and sauce for lunch, nectarine and icy pole for afternoon tea….., How much have you had to drink- up to 1 litre a day now, How’s the pain – not too bad, mouth and throat Ok, bit of bottom pain though, Have you been out of bed- yes 4 lots of hot laps around the ward and 2 lots of stationary bike so far today. Overall they are happy with these responses.

But my biggest challenge at the moment is the overwhelming sense of fatigue, I nod off mid sentence and even had a little kip leaning on the nurses station midway through the hotlaps! Everyone says this is normal but it doesn’t feel normal or good to me.

More tomorrow when hopefully they will have removed my opioids and I’ll be feeling more like me.

Some avid readers may have noticed that I have been absent from my blog for more than 5 days.  This is solely because I have been too sick to put any words down on paper.  In a nutshell I have been spaced out and suffering from the drugs the medical team have got me on to manage the pain and other effects of the chemo and transplant.

Compounded with this I have not been able to sleep at night time due largely to the confusion brought on by the drugs once again.

But the GOOD NEWS is that my neutrophils have begun to return, they were 0.1 yesterday, Day 19 Post Transplant (as predicted by Andrew the consultant on duty over the weekend) and 0.1 again today, the WBC count is slowly climbing which is also great news. These are actually new cells produced by Tony’s stem cells which are invading the space left after my bone marrow was nuked during the chemotherapy (thanks again Tony).

I’ve continued to have daily visits from the Pain Team, the Nutritionists, the BMT team and of course my Home team consisting of Jan and Lachy. The nurses have continued to provide great care as well as support and encouragement during this brain fog.

I have begun to eat again, when I say eat I really mean drink foodie sort of stuff including the Ensure balanced protein drink and I’ve also been having the little sucky packs of baby food which I can just keep in the fridge for when I’m hungry. Cold things are easiest to swallow as my throat is still a bit sore. The idea is to wean myself off the TPN (the IV nutrition which comes in the big silver bag). I’d like to be fully off it in the next 3 days so I can get my gut working well in preparation for going home early next week.

Today was a mirror image of yesterday with the exception that the doctors told me I wasn’t doing well…. I was doing very well.

As you can see, my white cell counts are still at 0.1 – the neutrophils are at 0. As we were writing this post, a Li came in to change one of my lines and overheard us talking about the cell counts. He added some more information – the A+ is based on the fact that I haven’t had a blood transfusion for a while, and my cell counts and platelet counts are holding steady. This is an indication that some of the newly implanted bone marrow stem cells might be starting to do some work.

My neutrophil count will still take another 3-4 days to come up from 0. It’s a long road to recovery.

Good news is that the pain control is working well enough to allow me to drink a can of soft drink and eat a red Zooper Dooper for breakfast whilst doing my daily bike session. Nothing like mixing work with pleasure.

You will also notice that despite the 40 degree heat here in Melbourne today I am wearing a beanie, its a strict “No Hat , No Play ” policy for me here on Ward B

I’ve realised this morning that my recovery process is the result of a great number of teams working with me.

The first team, and perhaps the most important, is my family. Having their continued daily support, whether it be popping in to say hello, bringing little packages that have been posted to Melbourne, sending through a picture of what they’re up to on the family WhatsApp group, or making a ritual of checking in each day with a phone-call on the way to or from work. Jan is worthy of a special mention for her desire to be present here with me in the room to help out in any event, particularly when I’m going through some tough spots.

The second team is the BMT team. On any one day I can be visited by two to eight doctors, who collaboratively work on my case, discussing the previous day’s blood results and working out the plan for the current day and the days to come.

The third team is the nursing team, who are absolutely fabulous and despite constant shift changes, seem to be able to come in and know my situation well enough to continue on seamlessly. I’m getting to know many of the nurses in the ward by now and it’s fantastic to see that a large portion of them are male. This team has a second part to it, and I’m also very grateful to the thankless work that all the ancillary staff do in keeping everything clean and moving smoothly throughout the machine that is this hospital.

The fourth team is the extended family and friends, who are constantly sending me get-well messages and messages of support – which are greatly appreciated and make me feel very special to have such a caring and supportive group of people around me in life.

The fifth team is pharmacy team who are constantly providing updates on the drugs and checking on my progress. I’ve got 6 active lines of fluid/drug coming into me at the moment, delivering 13 different drugs  over the course of the day.

The sixth team is the haematology team, who are not currently active in my treatment (they work up until the transplant occurs) but still drop in from time to time to see how I’m doing.

Another five teams cover our business interests, Ie, Mike and Kate at the top end of Australia out of Kununurra, WA.  Paul at Proway with Bill and Joe.  These guys keep a very complex manufacturing business running smoothly.  Peter and Deb at our Caravan Park at Whyalla – have restored and run the park without any fuss.  Greg and Paul with our new Cameron Park development.  And of course Knox who leases Milford in Tassie.

Without these great people and the teams that they work with I am sure life would be a lot more stressful for me, so they need to be included as part of the Recovery Team Network.

I feel very comfortable, having been involved in teamwork throughout my life I’m well acquainted with the power of good functional teams working together to solve a complex problem (my health) and it’s reassuring that the Royal Melbourne Hospital uses a team-based approach to caring for me.

Following on from last night’s blog (which was written by Lachy for those worried mums out there that thought I might choose a favourite child!), today I’ll just run you through Ward 7B of the Royal Melbourne Hospital. And before we get into the pictures, health-wise today has been a good day with some improvement in the pain relief for my throat. I’ve started to sip water again (*gulp*), have been through the usual tests (body temp, blood pressure, weight, oxygen saturation) multiple times a day. They’ve been concerned about high pressure (150-160, normally 110-120) and as a result I’ve been put on another new medication for reducing my blood pressure. But otherwise the team are very happy with my progress so far.

Today’s post is a short one – I’ve begrudgingly taken the advice of my favourite son (Lachlan) and decided to move to a lighter, picture focused format for the next little while. The main reason for this is that my new and exciting mix of pharmaceuticals is making it tough for me to focus on complex philosophical and scientific musings of the sort you’ve come to expect from me as an audience. Life’s tough, but the show must go on.

A lot has happened over the past two days.  When you get sick the team certainly come running and watch you very carefully.

The chest x-ray taken in my room had been analysed and so far does not show anything of concern.  I have CT Scan of my lungs scheduled.

The tests from my diarrhoea showed up positive to a bug (that we all carry) so they carry out more tests to determine if it is aggressive enough for antibiotic treatment.

However because I had a number of temperatures over 38 (38.9 tops) the team have taken no chance with infections and have put me straight on to a dose of Tazocin antibiotics.  You may remember that in the early days I developed a major rash on my torso and this was thought to possibly be due to Tazocin, but after exhaustive allergy testing the VID team were happy that I have another go at it (under close supervision) and I’m back in the game with Tazocin.

This added with lots of the normal IV drugs and “Uber Eats” IV Nutrition has meant that my body weight has fluctuated considerably on a daily basis.  To counter that, yes you guessed it, another IV drug- Lasix, a diuretic, to encourage me to pass the fluids – which are measured daily.

The biggest news of the day was the addition of the super self controlled syringe for the Morphine  (actually Fentanyl for me as the morphine has an effect on the kidneys and as we know my kidneys have already been stretched during the process………remember when you offered how you could help – how about a kidney donation!!!)  They call the syringe PCA – patient controlled analgesia.

Under this system the patient controls the delivery 24 x 7.  At last something I am in control of!  Its Great!  But the flipside is you have more hardware attached to keep you awake at night – the buzzers, beeps and sirens aren’t conducive to sleep.  But then again this drug knocks you out so that helps – perhaps too much at times.  Try writing a blog when you can only keep your eyes open 5 mins at a time!

I found it works quite well……….until a few out-riders.  This one appears to be all about pain management so the nurses will ask on each visit do you have any pains or headaches.  Standard greeting really – “morning…. any pain or headaches”.

Mind you in talking to our parents and friends this is a question we will probably all sadly gravitate to!

The nurses want a rating between 0 = no pain and 10 = unbearable.  Sounds easy but does 5 mean comfortable or in a lot of pain?  Apparently in loads of pain.

So my answer becomes 2-3 when doing light breathing and 6-7-8 when trying to swallow.

Now this is my conundrum – how can I keep the level of Fentanyl high enough to stop pain when I might be asleep for 1-2 hrs at a time?  The nurses answer is only press it when you need it.  My point is I need it throughout my sleep so when I wake up I’m not in pain and having to wait 30 mins for pain relief after I wake up.

My answer is simple – automation, I will maybe get the answer tomorrow from the “Pain Team Doctors” who are the anaesthetists who supervise the PCA process.

I have also done some Feng Shui rearrangement of the room to improve my view.

We rotated the bed 90dg to get a much better view down Elizabeth street,

The superinjector needed some running repairs but unfortunately I was stopped before sucess