I thought it was kidney stones again. I've been plagued with them over the years and thought they were back. For 2 weeks I'd been suffering back and shoulder pains. At first I thought it was just posture pain from spending too much time at my computer. I was between contracts and using the time to make as much progress as possible on the app I've been developing.
It was a Friday and Rach convinced me to go to Costco with her and Lauren. I'd never been and she promised it would be an experience (lol), and I really needed to get out the apartment. I made it about halfway round before I thought I was going to pass out. It was still the next day before I went to the hospital. Blokes are generally terrible for seeking medical help.
The next day Rach and Lauren were out at Woolworths and I was in agony so I finally succumbed and walked over to the hospital. Luckily, we live directly opposite an hospital - which has turned out to be very handy indeed.
I got triaged by the nurse before being sent for a CT scan and bloods. The CT scan revealed that I had mild pancreatitis, which was a surprise. The bigger surprise was to come from the blood tests.
A while later I was visited by Dr Shanavas, a haematologist. He would go on to become my main treating doctor. He told me that my white blood count was raised, I think 3 times above normal levels. Rach caught on straight away. I was a bit slower to catch on. I may know a lot about cybersecurity but my medical knowledge is severely lacking - at least it was at that point.
More tests were needed. The next day he returned to say that count had doubled overnight. Tests were pointing to acute Leukaemia. I would need a bone marrow biopsy tomorrow to confirm the exact type.
He explained the next steps. I would start on chemotherapy straight away. If it's the Leukaemia type he expected I would likely need at least four cycles of chemotherapy before being put forward for a bone marrow transplant. The first point of call for the transplant is my brother. There would be a 30% chance that he's a match. If no match then they go to the general donor register. That has a 70% chance of a match. Last resort would be my daughter Lauren. I really hope it doesn't come to that. He explained that it's a long process and even if all goes well I'd be looking at being out of work for a year.
Things started to finally sink in. I got upset, but strangely the stuff that was racing through my head was not concerns over my health, but worries about the financial situation and a feeling of utter stupidity.
I had given up my permanent job at Telstra in December to go contracting under my own business. Contracting can be lucrative but there's no sick pay, holidays, etc. If you don't work, you don't earn. I had finished one 6 month contract but had already been out of work for about 6 weeks when I got the diagnosis. We have savings but we also have expenses - most notably an expensive riverside apartment. A rent of $900 a week was fine when I was earning good money. Now we would be reliant upon Rach's income, and she was part-time. Not only that, when I left Telstra I moved my superannuation to the new Vanguard fund. I'd been put on the base level of income protection and life insurance and not yet got around to increasing it. I felt like an idiot.
Those first few days were a rollercoaster. The next day I had the bone marrow biopsy and started chemo. The bone marrow test confirmed I have Acute Lymphoblastic Leukaemia with Philadelphia positive (ALL-B+). Besides knowing that Leukaemia is a blood cancer I was utterly clueless at this time.
The white cell count had doubled again. Dr. Shanavas explained that if I hadn't come into hospital when I did I would have been dead within 3 weeks. That concentrated the mind. Never again will I just put up with the pain.
Private Medical Insurance
In Australia, a single person earning over $93,000 or a family with income over $186,000 gets hit with an extra tax - the Medicare Surcharge Levy. This can be avoided if you have private hospital cover from an approved insurance provider. The idea is to encourage those who can afford it get to get private cover to take the strain off the public system.
Until now, I've had private hospital cover for years and never made use of it to check in to a private hospital. I also never bothered getting the additional Extras cover for dental, physio, etc as i ran the numbers and it never made financial sense.
Coming from the UK with the NHS, for a long time I was reticent about the Australian system. The two-tier system just felt wrong. Yet another thing where money talks. I was of the opinion that quality healthcare and education should be available to everyone, irrespective of ability to pay.
My view has now become a bit more pragmatic. Especially when looking at wait times on the NHS. As egalitarian as the UK system is, I really believe that it's unsustainable in the long term.
Up until now (mainly for my kidney stones treatment), I had checked into a public hospital and let the public hospital claim on my private cover. A bit worthy I know but I never gave it much thought.
This time I'm in a private hospital and extremely grateful that I am.
When I first got admitted I was put in a shared room with one other. A bit later I was moved to another shared room. In both cases I was sharing with old deaf men who insisted on having their TV on at the loudest setting 24hrs a day. Luckily I eventually got moved to a private room to start my chemo.
I could probably do a longer post just on chemo. Talk about a rollercoaster. Every day is different and you just don't know what to expect (at least during the initial cycles). The thing about chemo is that it does a great job of killing the cancer cells, but it also kills a lot of cells that you need, particularly in the gut lining, the mouth and hair follicles.
The chemo protocol is different each day and has involved a bunch of drugs I had never heard of - Cytarabina, Methotrexate, Doxorubicin, Vincristine, Cyclophosphomide, etc. All of which have their own side-effects. Most of these are administered via IV. Some are oral tablets. Twice each cycle I also have to go for a lumber puncture to deliver one of the chemo drugs to protect the brain.
As well as the chemo I've been administered heavy doses of the steroid dexamethasone. If anything, the side-effect of this were just had bad as some of the chemo drugs, particularly in the first cycle. I was told that It would make me hypersensitive and would affect sleep. Yes and more. It sent me a bit loopy. The worst day was when I had short-term memory loss. The confusion was one of the scariest things I've ever experienced. I now have a bit of knowledge about what it must be like for dementia sufferers. I really hope I never get dementia.
The physical pain can be handled. When I need it, I get Panadol, Endone, and one time I even had Fentanyl. I was a bit reluctant to have this after visiting San Francisco and Vancouver and seeing first-hand the utter destruction Fentanyl addiction is causing. The staff assured me that in hospital it's strictly controlled and I don't have to worry about addiction.
The mental effects though are something that you just have to take. There is no drug you can take. You just have to hope it's temporary and will pass. Luckily it did and so far I haven't experienced anything like what I went through in cycle 1.
One of the worst side-effects from chemo has been Mucositis. Each cycle this has manifested after a few days. It starts with a sore throat and before long it's extremely painful to swallow. Given the amount of drugs I have to to take orally each day to counter the chemo, this in itself is an ordeal. The soft food diet has resulted in me losing 14kg of weight so far. I'm sure its not all down to the Mucositis. Some of this is muscle loss from spending 8 weeks in hospital. I'm following a physio plan but there's many days when the chemo means it's a struggle just to get out of bed.
I had a full body P.E.T scan to discover if there were any other cancers lurking. The scan found a lesion on my colon.
I had a colonoscopy, which luckily found that it was just a polyp. They removed the polyp but I ended up with some significant bleeding. The next day I had a further colonoscopy where they proudly proclaimed they had fixed the bleeding. They hadn't.
That evening, after sitting on the toilet for perhaps the seventh time, I suddenly new I was about to faint. I managed to hit the call button before I passed out.
I awoke to mayhem. I was flat out on the floor of the bathroom. There were perhaps 8 people in my room all looking worried. Alarms going off everywhere. I found out later that I was found unresponsive and they called a code blue. They even gave me chest compressions. My initial reaction was bemusement. I kept telling them that I felt fine but they were taking it extremely serious. To the point where all the staff on the ward kept mentioning the scare for days later.
Luckily the bleeding cleared up after a couple of days.
Sleep, or Lack Thereof
Tiredness and sleep is a perennial problem. You would think that spending all this time in hospital with nothing to do would mean I would have plenty of time to watch movies and read books. Not so. On chemo days the mental clarity is really a problem. I could only look at a screen for about 30 mins before I lose focus. It was certainly like that in the first few weeks. It's getting better now - to the point where I'm able to spend a few hours each day working on my app. More on the app another time.
Sleep is a real problem. I'm hooked up to the IV stack via a PICC line in my arm for most hours during the day. The PICC line is a thin wire inserted into a vein in my arm that comes out to 3 separate lumens. This allows multiple drugs to be administered at once while also being able to retrieve blood. I have to have daily blood tests - for some reason they insist on doing this at 4am. When I had the PICC inserted they said some patients have it in for 8 months. I'm on my 3rd PICC already. After a couple of weeks the nurses have problems extracting blood. I don't know whether this is a particular problem with my compatibility or they're just not flushing the lumens properly. What this means is that once they fail to take blood they call for the vampires in Pathology to take peripherals (i.e stick me in the other arm). After a while the other arm becomes like a pin cushion and extremely soar.
The IV alarms are constantly going off - end of infusion, upstream collusion, downstream collusion, air bubble (that one's a bit scary). I swear to god I'll be hearing those alarms in my sleep for years to come. Then there's the general hospital noise 24/7. Even though I'm in a private room the walls are very thin. I can hear the same alarms going off throughout the ward and often the nurses choose my room to stand outside at 3am and have chat.
At the end of each cycle I have a bone marrow biopsy to test the results of the chemo. This one's a bit of an ordeal the day of two after. It results in joint stiffening and pain all over.
Luckily, after the first cycle I received the fantastic news that I was in remission. Not only that - deep remission. This meant that I have something like a less than 0.001 chance of recurrence. That doesn't mean the chemo stops. I still need to do at least four cycles and have the transplant.
At the end of first cycle they let me out for a weekend pass. At the end of the second cycle they let me out for a full 6 days. Bliss. To sleep in my own bed and not get interrupted, and eat something different to hospital food.
I have picked up two blood infections since being in hospital. One has been treated. The other is a Carbapenem-resistant Enterobacteriaceae (CRE) superbug. This can't be treated with antibiotics and I just have to live with it. It's not really a problem for me. The problem is for other patient. What this means is that I'm on permanent contact precautions while in hospital. I have to have my own room and any staff entering the room have to rig up with gloves and protective clothing so they don't pass it on to other patients. It's a pain in the arse for them.
Before getting the diagnosis we had already planned to return to the UK. Lauren graduates from University in December and is planning on backpacking around Europe for a while. We've now lived in Australia for 16 years and are ready for a change. The COVID lockdown experience made us realise how isolated were are out here. Also, priorities shift the older you get. We came here for the lifestyle, but the longer we've been away the more we have missed friends and family, and everything that the UK and the proximity to Europe offers. We're also completely over the Brisbane heat and humidity. The plan was to go and live in London for a year. We love London and luckily with my career it shouldn't be that difficult to pick up work. Obviously that's out of the window now. Rental costs and not being able to work makes it a non-starter. There's also the question of family support. Rach will not be able to work for 3 months after transplant to be my carer. Any extra family support (for Rach) will be particularly welcome.
Flights were booked before I got diagnosed. We haven't cancelled them. My chemo should finish around about mid-October. It now all depends on the transplant. Our Dr has sent an email to the transplant team at Sheffield Royal Hallamshire to make contact. If all goes well we're hoping to get a transfer to Sheffield for the transplant. Timing is an issue though. Apparently they don't like a gap of more than one month between chemo and transplant. This probably means that I either have to continue further chemo here right up until December, or I fly back early and miss Lauren's graduation. Both scenarios are not ideal.
We will then need to look for a place to rent. We're thinking at the moment it will probably be somewhere back near family in Worksop, not too far from Sheffield. Rent is less than half what it would be in London. Luckily we have enough savings to cover the year out of work. It's a shame we have to use it but I guess that's what savings are for.
I'm grateful for my care team. Besides the nurses, who really are angels (I couldn't do that job), I have Dr. Shanavas who is a bona-fide expert and seems to be able to accurately predict to the day what side effects I will get, and importantly, when they will end. I also have other experts that regularly visit me to check on my liver, diet, physio and other aspects.
Most importantly, I'm grateful for Rachelle and Lauren. Rach managed to pick up extra hours at work while still allowing a late start and early finish to visit me in hospital. Even though we only live across the road Rach insists on being here all the time. I keep telling her to go home but she wants to be here with me. I know it's taking its toll.
Anyway, I'm tired now and returning to my sick bed. More later. Hopefully it's not another 4 years again before I post another blog post!