Author: geoffhamo

You may have noticed that the frequency of the blog has dropped off a little – mainly due to the fact that nothing has happened of note with regards to my health.  I remain at home with HITH visiting daily.  No high temperatures, no headaches, no pain, eating well, sleeping well and no vomiting or diarrhoea – all the things that the nurses want to now with each visit!

I was due to receive two units of blood on Monday (blood transfusion basically) but when I arrived at the hospital the team decided that my red blood cells were doing OK and I didn’t need this now.  So from there I made a visit to the HITH office for the daily routine (saving them a trip out to Docklands) and proceeded home.

Most days follow a routine of a morning walk, breakfast, reading, knitting and filling in time.

Wednesday was an exciting one as I ventured out to the shops and purchased a bicycle, to save hiring one each time we decide to go riding.  I had been warned not to ride too soon when recovering but I think the time is pretty good now. Riding a bike around Melbourne is a great thing as there are so many dedicated bike lanes keeping you away from the traffic.

My blood counts have bounced around a little since being discharged.

The Red Blood Cells (Haemoglobin) have climbed from 84 to 101 but on Wednesday dropped back to 85 – very close to the cut off level of 80 where I will receive a transfusion, but back to 95 on Thursday.

The White Cells have climbed from 2.1 p to 3.0 (4-11 is normal) but then dropped back to 2.5 at one stage and are now back to 3.4.  Apparently this is normal when recovering from Chemotheraphy.

The platelets (for blood clotting) dropped from 31 down to 25 and then climbed back to 28 – all low numbers when the normal range is 150-400.  This is why my doctors don’t want me on a bike.  An accident with bleeding could be serious!

The all-important Neutrophils have climbed from 0.3 at discharge up to 2.3 (normal range 2-7.5) which indicates my immune system is getting back on track.

So on Thursday HTIH rang to say the nurse wouldn’t be coming out until the afternoon but as I was keen to get the new blood tests and not waste a day waiting around I suggested we come in and make a visit at the hospital which they agreed to.  (To make this easier we decided to take the bikes rather than walk.  Walking takes around 45 minutes but the bike around 15 or 20). Dr Jess if you are reading this I was very carefull and survived the trip!

HITH have informed me that they will only do blood tests every second day from now on – obviously the doctors are confident things are heading back up into the normal range again.

So armed with that information I have been happier to ‘venture out’ with the necessary precaution of wearing a mask when around crowds.  Jan and I biked over to Crown to see the film ‘ Murder on Orient Express’  We both enjoyed it and I’d recommend it.

I’ll update things when more information comes to hand.  Next week is a big one for me with lots of appointments and tests.

Yesterday and today have been pretty uneventful.  From a medical point of view everything is going well. My blood pressure is good, my heart rate and all other observations are going well.  Mind you my natural heart rate is in the mid 40s which is very low and when a nurse sees something close to 50 they start getting nervous!

I had visits from old school friend Henry Poole for breakfast on Saturday and then a friend of Jan’s Susan Nicholson for lunch Saturday.

The HITH team take about 45-60 minutes to check me out and change the IV drugs and this usually happens early afternoon although on Friday it wasn’t until 6.00pm.

I have managed some good walks of an hour or so each time, but my doctors (Jess in particular!) have banned me from bike riding until my blood counts return to normal.  We managed to head down to the Yarra river to check out the helicopters transferring the glamorous punters to Derby Day at Flemington Race course.

 

The neutrophils are now at 1.2 (2-7 is the normal range) and rising so things are heading in the right direction. Haemoglobin is 93 (10-175 normal), White Blood Cells are 2.3 (4-11 normal) and platelets 27 (150-400 normal).

So where am I up to with my treatment?

Basically I have finished my second round (consolidation phase) of Chemotheraphy, although I still have a few days of the USA drug, midostaurin to finish off.  Now that I am out of hospital I am waiting for the blood counts to rise into the normal range before I can ‘venture out’ without a mask and extra precautions to avoid infections.

I have a series of tests (CT Scan, Bone Marrow Biopsy) scheduled for the middle of November which will then dictate the timing of my bone marrow transplant.  This has been set for early December but if the CT scan shows my chest infection has not cleared up the doctors may delay the transplant for further treatment.

As the chest infection is a fungal (Aspergillus) infection the IV drugs (Ambisome) take a long time to come have the desired effect.  At this stage I am set to receive this drug for z total of 8 weeks (i’m up to week 6) but this may be extended to 12 weeks.  This involves receiving 600ml of a yellow IV drug once daily, including each and every day that I am at home.

The bone marrow biopsy will hopefully confirm that I am still in remission (cancer free) although this is not guaranteed – the cancer can reappear.

If all goes well and the infection has cleared then I will be admitted to hospital towards the end of November for the last (and quite aggressive) round of Chemotheraphy prior to the Bone Marrow (stem cell) transplant from my brother Tony.

I have not met with my Transplant team (a completely new group of doctors) yet, so do not have the official word on timing and what the process might be.  My information to date has come from talking to transplant patients in Ward 7B (some have horror stories of recovery) and other survivors of Leukaemia who friends have put me in touch with.

I am sure more information will come to light in due course.

But for now my goal is to enjoy my time at home and work on a full recovery for the chest infection.

 

When you are neutropenic (low or no immunity) the medical team want to keep a close eye on you.  This is for two reasons.  Firstly they need to ensure you are not mixing with lots of other people (being confined to a hospital room with HEPA filtered air is one way of achieving this) and secondly if you do get an infection they are able to administer anti-biotics immediately.

So when I was re-admitted to hospital on Monday afternoon my neutrophil level (which is a primary indicator of immunity) was well down – around 0.1.  The aim after Chemotheraphy is to get this count down to 0.0 and then wait for your neutrophils to recover.

I kept on asking my medical team how long I would be required to sit in my hospital room, all the time feeling quite OK, waiting for this to happen.

Jess and Suzie were not keen to be drawn on this one, but thought at least 5 days, maybe 7.  Ashish the senior consultant was a little more conservative saying maybe 10.

So upon waking on Thursday morning you can imagine how surprised I was when my Nurse, Fiona, wrote up the new blood counts from the midnight collection, showing the neutrophils had started to climb again and were at 0.3.  She cautioned me not to get too excited as in her experience this count could bounce up and down a bit each day.  I was thinking just a few more days in hospital to get beyond the 0.5 mark when the Heam Team would be happy for me to go home.

My doctors, Jess and Suzie made an early visit with some great news, they felt that as my neutrophils were rising again and i was generally in good health perhaps I could go home earlier than expected but they would have to check with their senior consultant.

They reappeared soon after with the good news that I could be released (discharged I think is the correct term) today subject to Hospital in the Home (HITH) being able to take me on.  In the meantime they were happy for day release, wanting me back in the afternoon for another round of Platelets and Ambisome.  I was thrilled with this early release after just 3 days and wondered why.  In Jess’s words “you are an over-achiever” which bought a smile to my face!

This worked in very well as it was Lachy’s birthday and Jan had planned a small family celebration at lunchtime. We enjoyed a lovely chicken salad lunch with a special Mango cheesecake for Lachy! Happy Birthday Lachy!!

After a nice nap we headed back to Hospital for the top up on platelets and the IV Ambisome.  Luckily HITH had found space for me in their program and fitted me up with the portable pump for the Ambisome.  I have to carry this 24/7 as it cannot be disconnected – primarily due to the risk of infection.  Each time the IV drip is connected to my Hickman lumen the nurse cleans the connection point (tap) for 15secs with an alcohol wipe.  Prior to that they ‘flush’ the lumen line with a saline solution – something that I could not do at home by myself.

So the upside is I can now enjoy being home (perhaps for 2 weeks or more) but will have to carry around my ‘bum bag’ 24/7.

What a difference a few days makes.

Goodbye to Jess and Suzie who are now moving to another posting in the Victorian Hospital system – you have been wonderful doctors and I will miss you both!

Jan organised a small celebration for Lachy’s 25th birthday.

PS. The new beanie is coming along well.  More details on the auction later.

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

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

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

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

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

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

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

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

The Beanie

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

More in a day or so.

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

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

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

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

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

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

Which brings me to my situation:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

Here is a quick quiz:

How do you increase blood pressure?

(a) Eat more food

(b) Go for a walk/run

(c) T ake some tablets

(d) Drink more/re-hydrate

(e) Have an argument with your spouse

Answer at bottom of blog.

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

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

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

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

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

Quiz Answer:

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