Living with cancer

As there has never been a reported cancer patient in our family tree, it came as a surprise to me when my GP at the time blurted out to me that I had cancer in the month of May 2016!

But let me start at the beginning.

As a child I was fascinated by the opportunity that I may have to see in the new century. I used to say “Gee, I will be 57 when the year 2000 comes about”. Life went on and in 1999 we landed in the town where we still live today. We bought a 100 year old sandstone cottage and started to build up our new home after being Grey Nomads for five years. I was at my Mother’s funeral in 1999 that my younger brother said to me “Why are you limping?”. I had not noticed.

This was at the start of my adventure with total knee replacements. By 2002 it became apparent that the two of us would get no sleep in the same bed as I wriggled around  too much trying to get into a position to whilst sleeping so that I could be painless and find some comfort. So I bought my own queen-size bed, we closed our little shop down that we had selling crafty stuff and took up to being on unemployment benefits. A short while later I was awarded a Disability Pension and Judith a spouses living allowance and by 2010 we were both receiving the old age pension from the government.

By some strange coincidence both Judith and I suffered from knee ailments and had both our knees replaced with Titanium steel ones over a period of 10 years. All operations were successful. My left knee which has now been in operation for 14 years, gives me a tweak of pain every now and then and might need some attention in the near future.

Sleeping alone brought benefits like staying up late reading or watching TV.  It was also quiet with no deep snoring sounds to be heard. I also brought a Chemical Portable Toilet into into room, so that it was not a big issue getting up in the middle of the night and stomping down the length of the corridor and through the kitchen and laundry  to the toilet, at the rear of the house. I started sitting to empty my bladder and found that it emptied very well. I know this is not a very manly thing to do but it is definitely a lot cleaner.

This was 2002 and I bought myself a wheelchair as my knees were killing me. This was also the time of the Health Insurance debacle and my Specialist suddenly retired and I had to start all over again. Luckily Adelaide Orthopaedic Specialists were still visiting Port Augusta Hospital and I was able to get my first Total Knee Replacement in the winter of 2003. This brought some relief and I still went down on the list for my next knee replacement and this happened in 2005 also at Port Augusta Hospital, but with a different specialist. By 2006 I was walking well with my staff and by 2007 walking without using my staff.

Life went on and in 2008 I had a Carpal Tunnel operation to my right hand which alleviated the pain and numbness. Then in 2009 I started feeling pain in my left hip and then again in my right hip. I went through the process again of having a Cat-scan done of my Lower Back. The specialist told me that my hips were fine and did not need attention but that I had the onset of Spinal Stenosis and that doctors are loath to operate on someone over the age of 60 as there were too many variables of what could go wrong. At this time I was 66. I was given a variety of prescriptions but mainly relied on Diclofenac and so I slowly but surely lost my ability to walk properly and needed a walking stick to keep my balance right. In 2013 I was in Alice Springs and visiting with Bill and Liz. They had just installed new floor in their house. The floor had a concrete base and a soft padded vinyl type covering. It was very smooth to walk on and I was in my socks when I slipped and fell backwards hitting my head quite hard on the floor. I was a bit dizzy for a few minutes but soon recovered.

A few days late Bill and I and another bloke went camping in the Cleland Hills. s remote part of Central Australia about 500km west of Alice Springs. One morning the frying pan dropped out of my left hand as I tried to pick it up. I immediately thought that I had had a stroke but discounted it later on as my face still held its position. The following day I was weak when we went exploring. By the time I got home again I started experiencing hot flushes with my skin feeling like I have been sunburned. I went to see our local physiotherapist and had acupuncture and massages, all to no avail. While massages were good I returned back to the old position by the late afternoon.

I started seeing Doctors at our local clinic and ended up seeing a different Locum every time. My condition became steadily worse and I asked if I could get a referral to a specialist in Adelaide this was done on 4th July 2014. In January of 2017 I was summarily taken off the list with a statement that my condition was not bad enough to be worthy to be seen by a specialist. In the mean time my condition started deteriorating by the day. I was dragging my left foot, tripping up on objects and falling, mainly to my left side. A Doctor friend of mine, in Melbourne, became alarmed when he saw how bad my mobility was and arranged for me to have an MRI done and then three months later, when we returned from a visit to Tasmania, to see a Neurosurgeon in Melbourne. This bloke was kind and caring and said that I did not need an operation but would benefit from seeing a Neurologist and he suggested a friend of his in Adelaide. That eventually happened in September of 2016 and is ongoing at the moment. So now I was taking 750mg Lyrica twice a day, 1000mg Naproxen once a day, 100mg Tramadol twice a day and Sozol once every second day. This effectively cuts my back pain out with no side effects.

Back home in May of 2016 I noticed blood in the toilet bowl after having a pee and I immediately contacted our local clinic and gave a sample for analysis. And this is where the story about my cancer comes in.

My Doctor, a German born native with a strong accent and a rather brusque but to the point bedside manner, just said “You have cancer” It struck me like a thunderbolt. After all my niggly ailments over the years I was not expecting this.

An appointment was made with a Urologist in Adelaide and within ten days, which is quick by country standards, and off I went to visit him. It seemed however that all he wanted to talk about was fishing, which is not a favourite subject with me but he said that he would refer me to a specialist at the Lyell McEwin Hospital in Elizabethvale and would mark it as Urgent. When I asked how long ‘Urgent’ was at the Lyell McEwin, he replied “Oh, two to three months”. And this set the scene for the next half year and more.

We decided that waiting around for that length of time, worrying about what is going to happen next was a waste of time and so we packed the caravan and headed for Far North Queensland and Cape York. At Eromanga in Western Queensland I switched my phone on to make a call and received a call soon after. It was my Doctors who wanted to see me. When I told her where I was she was most indignant that I could not do this but I insisted that there was nothing to gain by sitting around waiting for a call. Three months later we were back home again to start the rounds of doctors appointments and procedure that I had to endure

To put all of these appointments into perspective I need to tell you that we live 230 kilometres from the hospital

First up was a ten minute appointment with the Registrar of the Urology Department

The I received two letters a week later. One for a Cystoscopy Procedure and another for an MRI of the lower bowel area. A Cystoscopy is when a small tube with camera is inserted in the penis pipe and the camera then tells the viewer what is happening inside the bladder.

The first time for the Cystoscopy Procedure we were just 30km short of arriving at the hospital when they rang to say that the specialist was sick and that they were resheduling the appointment and would send me a letter. After two weeks I rang to find out what was happening and they very apologetically made another appointment for me. In the mean time I came down to the hospital for the Lower Bowel MRI. That result was not conveyed to me until four weeks later! The Cystoscopy showed a large tumor the size of my thumb inside my bladder. Then I had to come down for a pre-op consultation and saw various nurses and  a very nice Anaesthetist. We agreed on a lumbar injection to deaden the lower half of my body while keeping me conscious. So on 7th December 2016 I went in for a Cystoscopy and Turbt,  as it is called, to remove the offending tumor. Another male anaesthetist with a heavy South African accent proceeded to give me an epidural lumbar injection. After 7 attempts he gave up as he could not penetrate the calcified bone joints to get to the nerve and so I had to have a General Anaesthetic.

I woke up in a ward with three other old blokes, one being Vietnamese and not speaking much English. He was, however, in good shape for a 96 year old. The operating doctor came by and told me that my bladder has been scraped clear of cancer but that the cancer was the aggressive type and that it was possible that there could be some remnants left in the bladder wall and that the specialists would have a look at the procedure at a meeting at the Royal Adelaide Hospital and that they would get back to me. He told me that I would be kept in overnight and that I could go home the next day.

At this juncture I had a catheter attached to my bladder and in the morning two nurses came by to remove the catheter. They were rough and hurt me somewhat. I went and had a shower and then after I was dressed I got up to do something and my walker slipped from underneath me and I fell forward. The next thing I received a needle jab and it was Goodnight. I remember having severe pain in my back and kept on trying to get up to alleviate that pain but  a nurse kept on pushing me back into the bed. Man, they pumped me full of drugs. Told me I had kidney failure and all types of other things. Kept on asking me if I was in pain while Endone and Oxycontin were used liberally. By the third day I started weaning myself off the drugs refusing to take them. On the Sunday I was wheeled out of my room to an x-ray machine and had a special x-ray done of my lungs. They said my lungs were damaged and I said that I knew that but why the x-ray in the first place. “Oh you have been coughing”. I retorted that I have not coughed in years and I pointed to a nurse who was coughing, not me. They became very embarrassed a quietly disappeared. On the Monday I agitated to go home and the hospital agreed to transfer me to the Peterborough Hospital by ambulance. On Tuesday I vacated my bed and the nurses ordered an ambulance for me. This was at 10am. By 3pm nothing was happening and so I asked what the go was. The nurses station became a flurry of activity and not long after they asked if I minded going in a Hire Car. I agreed and my transport arrived at 5.10pm. A stretched limo Black BMW to take me to Peterborough. It was the talk of the town for a while. I received excellent care at the Peterborough Soldiers Memorial Hospital and was released to go home on Wednesday evening

And then the wait began to see what the specialists have come up with for further treatment. Christmas and New Year came and went. On 16th January I received a specialists comment to my condition via my Doctor and a call from the Urology Department to say that I will be in consultation with a Specialist soon. But nothing happened after that. Then I had my now new doctor intervene as she had worked at the Lyell McEwin and knew the ropes. The result was that I was to have a meeting with the Registrar on 21st February 2017. So everything seems to take two months or more at the Lyell McEwin.

In the mean time I had a biopsy done on a dark blotch on my left arm. It has been sitting there for a number of years now and then I imagined it started to grow. The biopsy indicated that it was a malignant melanoma but that the finding was inconclusive so a new biopsy will be performed on 23rd February 2017 to find out the real truth.

I am reading web pages on the removal of the Bladder and/or Radiation Treatment and Chemotherapy of the Bladder none of which sound very exciting. Where is this going?
I hope I get some answers on 21st February…………………

In the mean time I try not to think about it but it does sit there in the background. We all know that life is terminal. It is just the date thereof that is unknown. Many humans to not even make it to 50 years of age and so I a grateful to have lived into my early 70’s and to have been able to see the world evolve over the time from the mid 1940’s into the early part of the 21st Century.

State of health update: 21st February 2017
I saw Doctor Hoffmann,  the Registrar, Urology Department, Lyell McEwin Hospital in Adelaide today.
My bladder cancer is aggressive and in the wall of my bladder and also possibly in the fat lining of my stomach
There are three options I can follow
1. Have bladder removed. It is a 5 hour operation. Complications are probable but not definite. It is a very traumatic operation to endure. Then that will be followed up by Radiation therapy. Outcome possible extension of life for 5 years but nothing is certain. I will also need to get around with a bag strapped to my body for urine excretion.
2. No operation but Radiation Therapy Treatment over the next 12 months. Outcome possible extension of life for 5 years or more but it depends on many factors and so nothing is certain. Chemotherapy os nit an option as explained to me
3. Do nothing. Outcome possible extension of life for 24 months maximum. Life will become very uncomfortable after 12 months and further on.
I have chosen Number 2 for a number of reasons but most of all that I do not relish the trauma I will have to endure at my age for numbers 1 and 3
I shall be having a consultation with the Radiation Specialists within 2-4 weeks. That is the way it works here
So while there is nothing to cheer about, I feel happy now that I have chosen a path into the unknown future
Update 22nd February 2017.
Doctor Hoffmann, the Registrar at Lyell McEwin Hospital rang me in the afternoon a bit apologetic stating that I will need to have Chemo Therapy after all, most likely by way of injection. This will be to combat the cancer coming back again. This again is a different department so I will need two separate appointments
Second biopsy on my left arm came back negative. Dr Sims took a large piece of skin off me that required 7 stitches which came out again on 2nd March and healed by 9th March
I have received notification that I will be seeing Dr Scott Carruthers for Radiation Therapy and Dr Patel for Chemotherapy at the Northern Adelaide  Cancer Centre on 9th March

Update 9th March.
I had Round 1 of setting up for Chemo and Radiation in Adelaide and including a precise CT Scan. It was a big day and George,who was visiting from Darwin,  accompanied me in what must have been a boring day for him. He did have a good book to read however. I was pretty tired by the time we got home after dark, but I did drive all the way.

I will have two bouts of week long Chemo infusion but I will be free to move around. So on 27th March I commence Chemotherapy Treatment for one week and on 4th April I start with 15 minute a day Radiation for 6 weeks. The second week of Chemo comes up in week 4 of the Radiation Treatment. We have booked the van in to Windsor Gardens Caravan Park from 26th March until about 18th May. It is going to be a 40km drive there and back to the Lyell McEwin Hospital each day but that is our only option that gives a modicum of freedom. There are rooms and units available at two suburbs in the city especially for cancer patients and owned by the Cancer Council of South Australia but they are even further away from the Lyell McEwin Hospital.

By the time that is done it remains to be seen what happens next. I am staying positive and hoping that that will help with my recovery and that I will be able to squeeze a few more years out of this body

Update 19th March.
We have a week of reading all the paper work given to me pertaining to Chemotherapy, Radiation Therapy and the side effects. We also have a week to set the van up with all necessities for living away.

26th March

Well, tomorrow I start 7 weeks of Chemotherapy and Radiation Therapy, which will hopefully kill all the Cancer cells in my Bladder

The Chemo will be infused into my bloodstream for one week only.
Then I start Radiation on the second week for a total of 6 weeks.
On week 4 of Radiation I will also have another 1 week of Chemotherapy

I have done a lot of research with the material given to me by the Oncology Department of the Lyell McEwin Hospital and on the Internet. Each patient reacts differently to the two therapies and each therapy is done differently according to the patients condition

It remains to be seen how I will be affected by the therapy



Being continued as things happen………


Posted in Life Stories.