My Health Journey - part 1

My journey starts with the need to cough a single cough every now and again. I really cannot remember when it started. Then January/February of 2020, I caught a cold virus and the cough increased. This also had the common swooshing in my ears in time with my heartbeat. The cold symptoms went except for the cough and the noises in my ears.

Fast forward to March when I noticed I was getting short of breath under heavy exertion but it would quickly settle. (I was very fit, could do 16 km stop start jogging.)

Then April 3rd I coughed and spat some phlegm with what looked like a trace of blood. I'd had yogurt and berries for breakfast so thought it might have been that. An hour later I again coughed and it certainly wasn't berries this time. A quick chat with my boss and we agreed this ought to be checked out. In to Albany Regional Hospital ER. I was quickly whisked in the back door of ER into the quarantine area as a Covid suspect. Not having a temp, ruled me out of being tested for Covid. Oxygen saturation also suggested no Covid. They brought a mobile xray machine into my area and xrayed my chest. Results came back. I did not have anything wrong with my lungs but appeared to have swelling in one quarter of my heart. I was told I just coughed too hard and damaged some vessels. I was also told as I was older, I should not come back to ER because in the coming days and weeks Covid would likely overrun the place. They were in "Panic Mode" I was given a referral for a CT scan of my chest.

8 Apr 2020, in ARH, I had the scan, then made an appt to see the Doctor I had seen maybe 3 or 4 years ago. Went to the doctors and was stopped from entering because I had a cough. (more Covid panic). Made appt for phone consult the following week.

27 Apr 2020 15:55pm, I again coughed at work and spat a little blood. I knew I had not coughed so hard this time. Back to ER, again taken in the back way into quarantine. Tested for Covid this time. Man what a test. They shove that sampling device right the way up into your sinus cavity. In the meantime the Doctor had seen the results of the CT scan, walks in and stands there at the end of my bed and blurts "Hasn't anyone told you, You have a large growth on your lung, oh and you have 4 lymph nodes that are also affected. You will need to go to Fiona Stanley to get further checked out". The nurse came in a bit later and says "I don't think you understood what the Dr was saying. You know you have cancer?" I understood full well what I had been told. My first thought was "Oh well, you've had a good life til now, maybe this is where the spit hits the fan". Panicking at this point would not have helped me. I knew something serious was wrong. Coughing blood is a red flag. The nurse continued to think I had not heard or understood. A real benefit for me at that point (and other tough times in my life) has been my strong Christian faith. I don't know what the future holds but I know who holds my future.

I went home, organised to stay in the caravan while waiting for my Covid results. On the Friday I had the phone consult with my Dr and he was taken aback by the whole thing and said "You do NOT need to go to Perth, we have one of the two best respiratory specialists in WA living here in Albany. He has a a room in Albany Regional and happens to be a friend. I will refer you to him. Oh and I just checked your Covid test and it has come back negative. Within an hour, the Lung Specialist, Professor Kendle was on the phone to me, apologising profusely about the failures that had occurred in the health system and let me know he had already been down to ER to deal with those failures. It sounded like he had not minced his words. I would loved to have been a fly on the wall.

30 Apr 2020 I had a consult with Professor Kendal.

5 May 2020 a CT guided Right Lung core biopsy was done through my back in ARH.

13 May 2020 See Professor Kendal again. It was found to be a fast growing, poorly differentiated, non small cell carcinoma. He referred me to the Oncology Drs in Albany Regional.

?? May. Because of Covid, I had a telehealth appt with the consultant, Dr Omar Faruque in the Oncology rooms. This part is a bit hazy as it moved very quickly.

28th May 2020 I had another CT scan in ARH

?? ??? Another telehealth appt with the consultant, Dr Omar Faruque. The discussion included staging and suggestions were stage 3b to stage 4. Removing it was not an option as it was strongly suspected that the lymph nodes were cancerous. Signing up for 3 months chemo was advised.

2 Jun 2020 I was sent for a PET at Qscan in Rockingham. I was asked to consume a special low sugar diet in the days prior. I was trying to be on a ketogenic diet anyway so it actually made no difference. I was given this IV of a radioactive substance attached to sugar and then had to wait an hour. They scanned me and I had to use a toilet marked "Radioactive". For the next hour I had to wait in a room they called "hot".

4 Jun 2020 I had a consult with Dr Omar Faruque for the results of PET - no known metastases.

18 & 19 Jun 2020 I was sent to Annette Mcwilliams at Fiona Stanley for a bronchioscopy. The plan was to take a look at the cancer and to penetrate the bronchi to biopsy the now 3 suspected cancerous lymph nodes. This was an example of being told one thing one moment and another at another time. A pathologist was ready to inspect the samples and found nothing suspect. They then sampled at least 3 more times for each node to have a better look.

The following week I was sent up again to a thoracic surgeon, Mr Chris Merry. He told me some great news. The lymph nodes were clear and that staged me at 2b, "Eminently removable" I think his words were. He also suggested it be removed ASAP. Unfortunately, their ASAP and mine were not quite the same. I got an appt to have it removed in 4 weeks. I was elated!

3 Jul 2020 I overdid working with a 9" angle grinder on the Friday and by Sunday I had so many muscles spasming. Monday I thought it would get better as the day wore on but I was wrong. My boss decided to drive me back into Albany. Just after we left we passed a White Tailed Black Cockatoo that turned it's head to follow us, on the side of the road. It had obviously been hit by a car and had a broken wing. I picked it up by dropping an old jacket over it. I took it to the vets but I was informed later, it's wing was too badly broken to easily repair so it was put down.

6 Jul 2020 15:36pm - I went to ER with backpains that I could not overcome with things I would normally use. The first thing they found was that I had a temp. Admitted and into quarantine again. Another Covid test, and I was admitted. After 4 changes in IV Abx, one appeared to be getting whatever the infection was under control. They never did identify what it was or where it was but they diagnosed me as Febrile illness of unknown origin, suspected Pnemonia.

13 Jul 2020 After a week, I was discharged with oral Abx. I was tired a bit later so settled down for a sleep. When I awoke it felt like I was again getting a fever. No temp so had dinner. I was sure I was getting a fever so checked again. Nope. Continued to feel worse and asked to be taken back to ER. Arrived with slight temp but normally it would have been ignored. Because I was under Oncology, they did bring me in. By the time I had been checked over, my temp was now 38. Admitted again. More IV Abx, more testing, still nothing found. One young trainee Dr asked if I had had any issues with my teeth recently and I made it plain I had. He very promptly arranged a dental xray and an appt with Albany Dental Hospital. They removed one tooth and decided not to remove the other because it penetrated the sinus cavity. Dentist had only done one such removal and that was on a pigs head. The dentist who could have done it was currently in Perth.

A CT scan was done to try to identify the source of my pain where it was discovered the cancer had grown. I was informed by Fiona Stanley that the cancer was now inoperable and the only option was chemo/radio. Shattered! Instead of 2 weeks healing it would be 3 months plus. After a few hours of thought, I figured it wasn't all bad, going the chemo/radiation route would mean that I would not loose 33% of my lungs to the operation. The cancer would be killed, my body would remove it, and heal and regaining my fitness would be way easier.

16 Jul 2020 Sounds coming from my right lung reduced and my ability to draw and expire from it were getting worse. Because of my good fitness levels, it did not restrict talking or minor exertion. This was of concern to my Drs in Albany. They believed placing a stent would open up the airway and stop any stagnation or infection in the lower part of my right lung. It was arranged that I was to undergo the procedure at Fiona Stanley.

17th Jul, RFDS was informed of my need for transport and I was told I would be seated upright on the 10am flight along with 2 other prone patients. I packed my gear into one of their ridiculously small carry on bags and waited, and waited. By 10:30 it was obvious something had gone wrong. The ambulance was either not informed, or forgot to transport me to the plane and it left without me. Shattered!

The head of nursing came to see me and was oh so apologetic. He had been watching my case and my progress and I could see he was quite distressed over the events. Another patient needed transfer so they added me to the 2:30pm flight. Ecstatic! Ambos came, and were informed the other patient had improved enough to no longer need transfer. Hmmmm, I still wonder if that patient ever existed. Soon I was on the RFDS flight.

I was transferred from the RFDS, by amulance to ward 5, Fiona Stanley Hospital with the promise of a stent being placed to hold the occluded airway open. Arrived late afternoon after fasting since 6am and it soon became obvious that while they had agreed to place the stent with Drs in Albany, that they had never intended to do so. Shattered!

Next day I was moved into ward 7C, one of the oncology wards. Blastocycstis hominis was found in my stool so on to yet another course of Abx. Discharged 22nd July and Anke picked me up and drove back to Albany.

Was booked in to Milroy Lodge for the 29th. Arrived on 27 Jul and began Chemo and Radiation on 28 Jul in outpatients at Fiona Stanley Hospital.

I fought not to have the supersteriod, dexamethazone as it was going to raise my blood glucose. This was counter to what I had been trying to do with my Keto diet. I was pushed into agreeing for a half dose (and I later found was not). Day went OK but that evening heading back to our accomodation this bloke in the left lane indicated to move into our lane. We must have been in his blind spot. He got really pissed off, horn, finger, waving fist. Then he pulls in behind us and starts flashing his lights and lunging at our car for maybe 3 or 4km. Then he pulls on our left side again and starts on the horn and with the finger again. I snapped! I was gunna have him. 72 kg me was gunna take on the tattooed, 110kg+, road raged dude. I found a thermos and opened the door and had my foot out while our car was still moving. He probably would have killed me. My wife was unaware and excellerated away. I was sooo enraged. We had dinner and went for a walk. I was still raging at 4am. Can you believe the same Dr continued to push me to use dex even after hearing the story? I ended up reporting him as a bully to the consultant.

30 Jul Condition deteriorated Thursday, informed Drs in Chemo Onc that I was flat and was having difficulty coping. Sent me back to Milroy. Didn't eat properly. Crawled into bed around 6pm. Woke around 10:30pm with a massive sweat. Checked temp but it was stable.

31 Jul Back to sleep and another sweat about 12:15am. Still no temp but weak. Tried ringing the 7C ward phone line repeatedly from the card I had been given. No answer. Tried 7D phone no, instant answer. They told me they could not help and try 7C again. Let them know I had tried multiple times. Person rang back and said they were answering and now expecting a call. Nothing. Turns out the number on the card was wrong. Called for ambulance. I was shocked, they were on site in maybe 5mins. I grabbed a few things and they took me to Charles Gardner Hospital. I asked about taking me to Fiona Stanley but didn't insist. I should have now in hindsite. Admitted SCGH 1:25am.

The next morning a new nurse was asigned to me. My BP was historically low and when she checked it was very concerned. I thought easy to fix, I'll just go for a jog. I fell in front of her but caught myself on my arms. She was shattered because in all her years of nursing no-one had fallen while under her care. I really felt for her but blow me down, a couple of hours later I got up to go to the loo. It wasn't unil I lifted my foot to push down on the pedal to open the lid, that I fell against the wall. I caught myself on the handbasin. Poor woman was even more taken aback. A few hours later she had looked at my notes and after a little discussion, we realised I had been given way more morphine than I was used to. I mentioned an interest in herbal medicine and we discovered a kindred spirit.

While lying in my bed, I watched as a a male nurse went about his duties. He was so gentle and caring even with the 2 patients with some sort of dementia. His dealings with a student nurse were just amazing. He gave her little bites of information and hints on how to discover more about the patients. At one stage he got her to look at the patient notes and pick 2 drugs they were historically on. She was to go away and learn all she could about those drugs so she could learn more about her patients. I had seen this happening for some hours and ended up praising the guy for the way he treated the patients and the way he taught the student. He found it difficult to accept the praise.

3rd August Transferred from Charles Gardner Hospital to Fiona Stanley Hospital and this is where the fun really began.

To be continued...