Living with cancer

As there has never been a reported cancer sufferer  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 I shifted continents and country of allegiance, got married in 1969 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. It 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!

Having a young female nurse handle my private parts with such competence was something else to get my head around but I survived the feined embarrassment. A thin tube with a miniature cameras head was inserted into my urinary tunnel of my penis. 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

Judith, my best friend and partner for the past 48 years will be accompanying me when necessary

28th March 2017

Yesterday was supposed to be the start of my treatment but due to monumental stuff-up by the Northern Cancer Centre, part of the Lyell McEwin Hospital, treatment won’t be starting until next Monday 3rd April ( the details of this will take more than one page to list and the person to blame went on leave yesterday….lol). It is enough to make one angry…..but I just shrug my shoulders……

Incompetence springs to mind and I have to rely on this mob for my health and well- being!

What I did get was a  tube that follows along a vein for 57cm from my arm to my heart where the medicines will be infused for 120hours of next week. The tube will stay in for the duration of the treatment. This was done under the same conditions of having an operation where the doctor scrubs up and the area affected is isolated

So after I get a new dressing on the insert today, we are going home and will be back in the city next Sunday evening. We are leaving the van and one car down here in the caravan park

Before we left for home I had an audience with the Registrar of the Oncology Department, Karen, and received an apology for what it is worth.

Friday 31st March This morning my urine overnight has the dark colour of blood and so there must be some haemorrhaging inside the Bladder.

Why has it taken 11 months to get this far? I realise that as a Public Patient I have to wait my turn in the queue. But why does it take so long? I am going to write to the head of Oncology and ask the question.

Sunday 2nd April. My urine has cleared up. My walking seems more fluid but I do remember taking an additional Lyrica 300mg pill. I am still on my Walker however and that is probably not going to change.

 

Day 1. Monday 3 April. My fist sensation with Chemotherapy. I have a bottle attached to me for one week. The bottle works on body temperature and infuses Fluorouracil in to my bloodstream via my heart. I carry the bottle in my shorts’ pocket.
Day 2.  I am feeling good after a shower and breakfast and 2 trips to the toilet. Information supplied suggests that I may get diarrhoea. Start Radiation Therapy today. Wearing Men’s Pads for the first time today

Hooked up to Chemo bottle

Hooked up to Chemo bottle

 

 

 

 

 

 

 

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First day of Radiation. All the nurses are very nice, one nurse looks just like my late Mother-in- Law. You have to lie very still and it can be uncomfortable. The process takes about 20minutes all up.  15 minutes of organising and 5 minutes of radiation

 

Radiation 1

Radiation 1

Radiation 2

Radiation 2

Radiation 3

Radiation 3

 

 

 

 

Photos by Florence

 

Day 3. Felt a little bit nauseous earlier in the day. But after ablutions, shower and breakfast I am feeling good if sleepy. Yesterday we bought penis pads for insertion into underpants as I often have little leaks. It is a bit cumbersome but I will use them for the week and then see again. Information supplied by the Cancer Council states that I may get diarrhoea. As I am taking other pills for back pain that bind me up the diarrhoea is not happening, which is a blessing. Maybe it will come later. Radiation at 12.25pm. Judith has gone bargain hunting

Day 4. Feeling better each day. Had to have the PICC taped up again as the connection had become sloppy. Nurses told me to go to the toilet to empty bladder and rectum. Easier said than done. Jude and Blaise went home in the MUX. Took two sachets of Macrovic to lighten up the bowels.

Day 5. Nurses  now worried about the rash in my groin which is as a result of a Fungus I have been carrying around for 6 years. Still no toilet results. Some results came in the evening. Took another sachet. Hope we get more fluid movements soon.

Day 6. Feeling woozy this morning. Prepping the van so that I can leave it for the weekend. Chemo therapy bottle gets disconnected at 2pm and then I have a two and a half  hour drive home.

I had the Chemo bottle removed at 2.15pm today. Had to go to Ward 1 D…….down this corridor to the end, turn left….down that corridor for a looong way, then veer right and then turn left. This hospital is like a Rabbit Warren. I was pretty exhausted when I got back to the car an hour later. I still have the PICC in my arm and the pipe in a vein to my heart. This will all come out at the end of my second Chemo session which starts after Easter on the 24th

Drove home in 2 hours and 10 minutes listening to TripleJ Radio and had the doof doof on real loud whilst sticking to all speed limits. Pretty tired tonight so will turn in early

Day 7. The weather turned cold. Judith was barking this morning so I ordered her to stay in bed but that is easier said than done. I accomplished some computer work, transferring documents and saving them to a new external hard drive. Wrote letters and sent PATS forms off. Washed my groin area with a salt solution to try and curb the incidence of the fungus that has been living there since 2011. Turned in at 9.30pm  but sleep was only in two hour sessions as that is what my bladder allows. And if I drink two mouth fulls of water then it reverts to a one hour sleep session.

Day 8. Groin fungus is rife and wet this morning and will need another salt dabbing. I have to see the nurse again this morning. Judith is staying home while I go back to the caravan in Adelaide for this short week before Easter. Next Radiation appointment is at 11.50am and an appointment with the head of the Urology Department at 2.10pm to check on progress I guess. Yesterday my radiation went OK and also the meeting with Dr Brien at the Urology Department where we talked about how I was progressing with my treatment and how things may pan out on the months ahead. Other business dealings dragged on at Munno Para Shopping Centre and I only arrived at the caravan park at 5pm.Yesterday my radiation went OK and also the meeting with Dr Brien at the Urology Department where we talked about how I was progressing with my treatment and how things may pan out on the months ahead. Other business dealings dragged on at Munno Para Shopping Centre and I only arrived at the caravan park at 5pm. My radiation went OK and also the meeting with Dr Brien at the Urology Department where we talked about how I was progressing with my treatment and how things may pan out on the months ahead. Other business dealings dragged on at Munno Para Shopping Centre and I only arrived at the caravan park at 5pm.

Day 9. Coolish night. Another two appointments today which will take up the whole day in the Northern suburbs. I have some new medicine for the groin fungus and will follow instructions.

My Mobility Issue resolved.

My Neurologist at the Lyell McEwin Hospital also, gave me the answers I have been waiting 3 years and 8 months for and after seeing various Doctors and Specialists

1. My fall in 2013 dislodged soft tissue in my neck which in turn hit the spinal cord and damaged it. The tissue between the vertebrae then retracted. One can see from the MRI where the damage was done. This in turn damaged a nerve which operates my left leg and that is why I drag my leg. Is it operable?.maybe, but he states I might then be permanently paralysed….Is it of benefit to me have an operation = No

2. My back has Spinal Stenosis, which is damage to the soft tissue between the vertebrae due to a car crash in 1980 and the onset of older age in 2013. Is it operable? Probably but it will be of no benefit if things go wrong as with nerve damage at an older age. Will it be of benefit to me = No

Answer: Keep on taking your painkillers and keep on moving

Back to my cancer reports;

I had my Radiation and also spoke with another doctor about the Fungus and told him that I am experimenting with different kinds of gel and will report back. The staff are nervous of any changes to my skin in the radiation area

Day 10. The phone rang at 7.30 as I had slept in and as I regularly ring Judith at 7am she was getting worried. I returned the call. I have a midday appointment today so I will do some housework to start off with. I am feeling relatively good today. I was lucky to get a disabled parking  spot right outside the Cancer Clinic and so I did not have the long walk from the car park. I was in and out quite quickly and back ob the road back to the caravan park where a prepared meal had defrosted and all I had to do was to put it in the microwave and push some buttons. Thanks Jude. Tomorrow afternoon I drive home for the Easter Long-weekend and make for the Boro.

Day 11. Slept most of yesterday arvo then watched telly till 10.30 and had my usual sleeps until 6.30am when I rang Jude for her morning wake-up. I am feeling a bit woozy today but otherwise good. Cleaning up behind me as I take stuff back home for the 4 day weekend. Radiation at 12 and Chemo doctor at 2 and then home

Day 12. Easter weekend. Slept in late. Body especially knees very stiff and sore. It is muscular pain. I had a rush of toilet visits and seem to have cleared my bowels.

Day 13. Feeling a bit better today.Went for a drive with a friend out to one of the stations nearby and did a bit of sluicing in a creek looking for colour

Day 14. Another relaxing day. Walking getting worse

Day 15. Today my back is really giving me a hard time. No pain but no strength at all. I am now literally a cripple and walk bent over sideways. We dropped the Xtrail off at a friends place as his brother -in-law is buying it. We have three lots of friends call around. Jude went and collected her paintings from the Art Prize as it is winding up today.

Day 16. We drove to Adelaide in the morning as I had Radiation at 2.20pm and PICC change of bandages at 3.30pm. Then on to the caravan at Windsor Gardens.

Day 17. Aches and pains this morning ….all skeletal…..should be OK when I warm up although the weather is still quite warm deep into April. Have lost some taste buds but generally taste is still OK. Radiation at 1.05pm. In other respects we had a good day solving some money matters with registration of vehicles. When the mood is good it helps with the treatment.

Day 18. Up just past 6am. Feeling quite good this morning. I sleep well in 2 hour shifts as my bladder controls the urine excretion.  Some rain about. Still reasonably warm. Radiation mid morning. I had a blood samplw taken as I start Chemo again next Monday. Felt crook all afternoon so had a lie down. Perked up in the evening.

Day 19. I discovered why I was feeling crook all afternoon. I had forgotten to take my morning pills yesterday. I discovered this in the evening so took the morning dose anyway. It is interesting how dependent one becomes on the regular pill. It rained last night. After Radiation session we are driving home as we have some business to attend to. I was out of the Radiation Theatre by 12.50. We had done our other jobs in the morning before radiation and we were on the road by 1pm. I drove all the way as Jude prefers me to drive as she gets nervous with me as a passenger. It isn’t what I say, it seems, it is what I am thinking. We has lunch and the lovely Bakery Cafe at Riverton and had two relief stops on the way home and clocked into Peterborough at 4pm. Went to sleep by 10pm but it was a rough night with recurring dreams and leg cramps and the last thing was the feeling of something hanging on to my foot. But this was at 6.30am and Blaise was up and lying on my foot ! Over the past 6 years I have had a fungal infection in my groin which comes and goes. I have seen 3 different doctors about it but to no avail. No one has an answer. The nurses at the Cancer Centre suggested a Gel which did not work either and the seeing a different doctor about my progress with the radiation and mentioning this to him he stated that the area must be kept dry as the fungus thrives on heat and wet areas. So off to a Chemist I go and there I had to ask what to do mentioning the embarrassing places to a young lady chemist and she suggested a Spray on Powder.  Tolnaftate. And it seems to be working. Hope so!

Day 20. Jude did the washing. The Datto would not start. Will need a new starter motor I think. Jude then cooked a beautiful lunch and we slacked off for the rest of the day. Cramps have gone and I am feeling OK.

Day 21. Sunday and we left home around 10am and did a slow drive back to Adelaide via Clare and Auburn. We had a great lunch at the Sir John Franklin Hotel in Kapunda and then drove to Tanunda, Williamstown, Chain of Ponds and a very twisty road back to our caravan at Windsor Gardens. It is a very pretty drive, mostly through wine lands and picturesque little hamlets or small country villages. I drove all the way but was tired by the time we got back to the van. Had an early night and sept through most of MKR !

Day 22. I had my new bottle of Fluorouracil attached for the next week of Chemotherapy. Felt a bit woozy to start with but came good after about half an hour and then took over the city driving again. After my Radiation session we made for Modbury and the Service SA Centre where Judith handed in her  Vehicle SOLD paper. I went to sleep in the arvo and woke up to have a bite to eat. Another gourmet meal from my mate. Watched some telly including MKR and the slept my usual sleep in two hour shifts

Day 23. Tuesday and ANZAC Day so a public holiday and a celebration for those who are interested in war. Feeling a bit stiff in my back this morning. Chemo is going OK and I feel neutral. A slow day ensued with reading novels and bush ballads. The weather chased us inside early with some showers about,

Day 24. At 12.45am the wind picked up with stormy weather about. The annexe was flapping rather hard and I decided to fit the annexe flappers, clips that hold the annexe steady. To get them I had to wake Jude who was not amused at my antics. However she produced the flappers and then took Blaise for a walk whilst I fitted the flappers. Feeling good this morning but after wearing closed in underpants the heat build up in my groin produced the wetness again. So out they go. A quick spray and the itch settled down. There was some confusion about my Treatment for the day as we received a phone call at 10.00am whilst driving to the northern suburbs to ask where I was. I knew I had to be there at 11.00 am but they thought it was 9.30. Anyway we did the treatment at 10.30. The staff were concerned that I had n0t cleaned out my bowels as they can detect gas (commonly known as a fart when it exits) and some solids in the rectum cavity. I explained that I had purged my bladder and rectum 20 minutes prior to the scan. I could feel that gas wanted to exit but it was physically not possible at this time.  Then we did shopping at Aldi and then home. Jude went and had a haircut. Blaise and I stayed in the van. A cool drizzly day.

Day 25. I had agreed at Reception at the Cancer Centre that I would swap times with another lady as she was unavailable early in the morning. So we were out of bed early and got there in good time  after the usual morning stuff. Then I went to the Service Centre in Modbury and I renewed my Disabled Parking permit, then shopping and then home.

Day 26. Another drizzly day. I am feeling good coming in to the last 36 hours of my Chemotherapy Infusion. I have not encountered any of the side effects that have been listed, so far. Radiation was good and I had some banter with the staff as usual. Afterwards we went to Beacons Lighting and found a new light for my desk. Then Super Cheap for car smellies and Dan Murphy’s for a wine cellar top up. Its going to be a  late lunch.

It was a late lunch and I had two glasses of Sauvignon Blanc which put me to sleep fpr the rest of the day waking up in time to see the early evening TV shows that Jude follows. We skipped supper but I had some slices of toast and Vegemite Cheese at around 10pm.

Day 27. Blaise wakes Judith up every morning around 5.20am by pummeling her paws on on her arm. Judith gets up, does what she has to do, dresses warmly and takes Blaise for  a walk outside the caravan park. At home Blaise has a Doggy Door so getting up is not necessary. I rise, do what I have to do, take my morning medicines, make the coffees and get on the internet to check for emails, the weather, the bank and Facebook!

I am feeling good this morning despite my mobility problem in the early mornings when my knees buckle when I put weight on them. I am going to see if I can do some sort f exercise to build up leg muscle strength.

Today the Chemotherapy bottle got removed from my arm and Monday the PICC and vein pipe will be removed. That is the end of Chemotherapy and of  Fluorouracil infusion which eases the Radiation burns to the cancer cells on the walls of my bladder.

Day 28. Sunday and a free day. Groin fungus irritable during the night. Used spray-on powder twice. Feeling good this morning especially after being freed from the Chemo bottle. We went for an exploratory drive in the Adelaide Hills after breakfast and got home at 3.30pm. It was a lovely drive over twisting roads and hairpin bends through beautiful autumn colours of vineyards and fruit farms. MKR Final cook-off

Day 29. Monday May 1. Weather forecast is for rain. Feeling good. Radiation first and then my PICC and line came out. I did not feel a thing. 14 days of Radiation left. MasterChef starts!

Photos by Heather.

Day 30. An afternoon appointment. I had to see one of the Doctors too. He said, ” Good to see you around” and I said, “Me too” and we both burst out laughing. I had to be weighed. Wow 131kg.”…sheesh ! Going to be diet coming up, soon.

Scan seemed to take extra long today and I fell asleep and dreamt weird dreams. The radiation left my skin feeling hot.

Day 31. Feeling OK  but walking with difficulty. Groin fungus is back and making scabs. Will see if I can get appointment with my doctor on Friday. Radiation is at midday. The days of winter are setting in and the temperature is dropping below 20C. After radiation we went and organised some new tyres for the MUX and fitment tomorrow. Then we dropped in to the Bookworm Shop in Valiant  Street at Holden Hill. A seriously full Bookshop. And there we discovered some Di Morrissey books. As we had decided to buy her whole collection we found more to add. But in the mean time I needed a toilet and the shop owner gave me directions but they were wrong and I got lost and so as the situation was becoming serious I high-tailed it back to the caravan about 4km away. Just made it and then had to ring Jude t find out just where this shop was as we do not know the suburbs. Good fun.

Day 32. Winter is here and we slept with the electric heater on for most of the night. Feeling good this morning. Radiation at midday. Well sort of/ They were behind but I was out of there by 1. Later we had new tyres fitted to the MUX and then we hit the traffic in to town after 3 arriving at the caravan at 4pm.

Day 33. 8 am appointment this morning by request so that we can get home and do some business. I also have a doctors appointment at 3.15pm. Left my medicines behind, eh?

Day 34. Painful rise. Now I know why I take painkillers. Drive to Burra to see Antique Fair and do Whole of Town Garage Sale.

Blaise was going barking mad today

First of all my medicine box was left behind in the van. So by midmorning I was stressed out being without my pills since the day before and had some near misses going to the toilet.

On our way back from Burra I once again was uncomfortable and had to pull into a small forest at Farrell Flat. After reorganising my life we hit the road with me still driving and getting crankier. So I took off a bit suddenly and accelerated to get up to speed on the highway. I noticed a door light had come on and pulled over to fix it. I thought that it was the rear right passenger door. No light was still one. So Jude got out and said through the open back door “There’s no dog here” Nothing else had fallen out.

We sped back to Farrell Flat at around 150kmh but couldn’t see Blaise on the highway but found her where we had turned in to stop, befriending a man who lived there. She hopped in to the car and did not bark for the rest of the trip.

Near Tarlee I gave the wheel over to Jude and we made it back to the caravan just in time for the toilet and my pills and a rest

Blaise is sulking on Mum’s bed….LOL

I have taken my pills, had a mini sleep and a bit to eat. Feeling better now

Day 35. Sunday. I forgot to add that when back at the van yesterday and upon exiting the toilet, my shoe somehow hooked on to the door frame putting me off balance and down I went like a ton of bricks. It hurt for a while and I will most likely have some bruises

So trying to work out what happened I found that my usually swollen leg is now almost back to normal size again and that pair of shoes are loose. So I think that that is a plus for the radiation.

Feeling good this morning after popping pills and taking anti-biotics.to clear up another affliction. It never seems to end, I had a good day today. I have been feeling good and walking better. A friend of a Facebook friend came to visit me. Les Skinner is an avid bush walker and desert traveller and we have much in common. So we had a cuppa and munchies provided by The Cook and an hour long chat while Jude disappeared into the shopping centre nearby

Day 36. Early rise at 5.45am when the furry child needs to go for a walk. Feeling good this morning. Had a glass of wine with dinner last night that resulted in 5 P in the bottle events. But I slept well. Fa bit woozy early on as I took the last of the anti-biotics and that made me crook. Radiation in the middle of the day. Waited an hour for service. Got cranky but joked with the staff and all settled down. Feeling good tonight.

Day 37. Another early rise. This time at 5am. Had a disturbed night with waterworks every hour due to a wine with my meal. Apart from that I am feeling good  this morning. Did some shopping and buying a 70th Birthday present. Blood test after lunch, then radiation and then the Doctor.
A good day.

Day 38. 5am rise again. I slept 5 hours straight but that took me to 2.30am. Then I dozed for an hour and then I got my phone and went on Facebook for an hour and then slept half an hour before Blaise woke us up again for walkies. Radiation at 11.10am. Feeling good despite the lack of sleep. Radiation was late again but I let it  slip by. We drove to Gawler to talk Solar with a panel supplier. He was not in but we received some paperwork and a promise that he would call. Then Munno Para to buy shoes for me and to have some lunch and then home. Feeling good but a tad tired.

Day 39. Blaise slept in this morning and we all went through to 6am. I had my normal nightly 2 hour sessions. Feeling good this morning but had some serious leg cramps last night. May be the two Tim Tams I ate before bed? Radiation and Doctor Patel after 1pm. Doctor reckons that I look good and that my blood count is good too. He will need to see me in August again after I have been scanned. Bought new shoes after driving the shoe sales lady nuts!

Day 40. Up before the magpies in the dark and after doing all the morning jobs and following up on this and that we got away at 7.15am for my Radiation at 8am and a car wash thereafter. We had a pie at Tarlee and arrived home before midday. Then there were various jobs on the list to do. Its quite cold in Peterborough and in the afternoon I chose to wear slacks again

Day 41. Upset tummy last night but that was more about eating licorice. My bed is warm without a electric blanket. In bed early but many wee dribbles though the night. Brain was working overtime and so I got up at 4.30am and went on the net. Fungus still prevalent and now in my bum-crack too. Not sure how we are going to fix it. Today is party preparation time. Food for the birthday tomorrow is catered for. We are only having a few friends around. Today we had visitors and Jude cleaned the BBQ area and patio and the two of us blew up balloons and put up bunting

Day 42. 14th of May and Jude turns 70! We had a lovely day with friends coming around to celebrate Jude’s birthday. I had organised for Julie Atkinson o cater pizzas, pavlova, birthday Black Forest Cake, fruit salad and Ice-cream. 13 humans just about polished the lot. Birthday started at 11.30 and ended at 3.30 and a jolly good time was had by all. After doing a million dished I ended up falling asleep in front of the TV

Day 43. Woke up with a real pain in my back but after doing some exercises and taking my pills I came good. We tidied up the house and left Peterborough around 10.30 am and then drove all the way to the van, unloaded all the gear and then drove back to the hospital. One of the radiographers has been reading my website and asked questions. Back home after 4 for munchies and a glass of wine outside under the awning

Day 44. Feeling better this morning. Radiation after lunch at 2pm so will go do some jobs at Munno Para. Saw Dr.Ben. Lovely young bloke. So enthusiastic. I told him that the Radiation seems to have shrunk the bloated left leg. He was amazed. Not so cold in town. Cloud cover and rain expected. Relaxed back at the van. Early to bed and I fell asleep during Masterchef and woke up during Jenny Brockie’s program on Rescue Paramedics.

Day 45. It rained during the night. Very stiff this morning and back hurting in early morning as do my knees. Have to move back around to warm up and wait for pills to kick in. Need to talk to Doc about painkillers. There was a small bingle in front of us on the way in. We got to the hospital in time. Radiation at 9am this morning. Rest of day free. Went to Aldi and fund some biskuits and Truffles as gifts for the Nurses. Drove down to BCF to look at stuff for camping but came away without anything. We had lunch at home and Curry and Rice which was delicious. Loafed after lunch. We had a shower of rain and snoozed the rest of the day away. Feeling quite good

Day 46. Radiation in middle of day again. Jude did a week’s washing and when we got to the Lyell McEwin Hospital I was called in just as I sat down on the waiting room. After Radiation, we went to Munno Para to conclude some Telstra business which did not eventuate even after waiting for some time to be served. On the way home we bought a PLB (Personal Locator Beacon) as insurance for our trips out in to the desert regions and some car polish for a job I was working on. Feeling good tonight. A bloke we know from Broken Hill came to visit. He is deaf so he shouts all the time. Luckily he didn’t stay long

Day 47. Feeling good this morning. Blaise slept in so its a late start to the day. Second last Radiation Day. Overcast with drizzle here and there.

Got our money back on PLB and then went looking for others. Seems like an EPIRB  with GPS is more what I want. Same sort of money. Still looking.
 
Had a good Radiation session with songs and jokes with the Radiation technicians. I am going to miss them.
Drew no joy at Telstra but received late afternoon call from Telstra with better news and a promise on Satellite phone connection. Jude went to Op Shop and bought a book of Pam Ayers Poems
. Traffic hideous and especially in large carparks and I nearly swallowed a Suzuki. Doing stuff over the weekend but not going far
 
Monday is last Radiation and I am feeling surprisingly good. Quite against the norm and as the Doctor said to me, “A rare occurrence”
Day 48. 4am disturbance with Blaise jumping from bed to bed. Turns out it was the beep of the Fire Alarm Battery going flat. Jude took her for a walk anyhow made coffee took the battery out and we all fell back into a sleep. more hunting for stuff today. Feeling good this morning despite nightly disturbance. Did shopping of needed items from BCF store. Feeling whole body skin burn this evening. Can’t work it out
Day 49. Sunday. Body skin burn gone for the moment. I must have touched a nerve somewhere. However, groin fungus has re emerged. Groin very wet and with skin abrasions I can feel but not see. Sitting over electric heater to see if I can dry it out. No matter what has been tried the fungus is winning. Have tried Psoriasis creme, Salt dampener, Achilles Heel Powder, other cremes, Spray-on Tinaderm powder. Otherwise, I am feeling good. Overcast but predited to be sunny later on.
Day 50. My last day of Radiation. 9.45 and then a de-brief by Nurses afterwards. Then it is 6 weeks till the next appointment which I suspect is an appointment to arrange another internal test to see how the treatment has killed off the cancer cells. Generally with my type of cancer two months is allowed for the treatment to take effect.
Visited the toilet no less than 10 times yesterday evening and through the night and I did not have must liquid intake apart from coffees and cool drinks.
I must say that I am a bit tired today.
Although I still have a way to go with my cancer evolvement I am going to shelve daily writing until we start back at the hospital in July
Thank you for following my journey of discovery with cancer so far. I hope that my blog might be of help to someone out there.
UPDATE July 2017
The specialists agree, although they cannot say 100% for sure, that my Chemotherapy and Radiation Treatment has been successful mainly due to the fact that I have not been affected by the treatment and that I am looking well. have a sun tan and have gained weight.
The process now is going to take another 9 months of scans. It takes that long for the body to recover from the treatment to make doubly sure that the cancer is gone
So we are having a wine and snacks as a celebration tonite in the motel room while it is bucketing down outside
Tomorrow I have a scan and then we can go home. I will only know the results of this scan when I see the Oncologist on 3rd August 2017

 

 

Being continued as things happen………

 

Posted in Life Stories.