A tough year of cancer

2019 began really or me on New Year’s Eve 31 December 2018. I was called to the hospital for a chat with my plastic surgeon, she told me that they had not got all the cancer out from my nose. The surgery scheduled or the 3rd January would now be to r

emove any remaining cancer, rather than

finish the rebuild. That meant that I awoke from that surgery with most of my nose removed and becoming permanently disfigured, they would build a prosthetic replacement eventually, (appointments made in January 2020).

That signalled the beginning of a year that has been physiologically more difficult than 2017 when I was in heart failure and not likely to survive without a heart transplant. The year started with that followed by radiation treatment, a series of infections in my eyes, followed by a knee replacement that was first scheduled for February, then June and finally performed in August, followed by more cancer being removed from my hand; that got seriously infected. I spent more time in hospital recovering and then my skin reacted to something.

I had my 2nd year heart check-up which included an angiogram. My heart was selected for a project where they are developing a tool to help diagnose heart diseases, due the good health of my heart. The procedure requires a catheter to be inserted through an artery in the wrist. They had trouble locating the artery and so I ended up bruised up my forearm for about 6 weeks. All went well otherwise. I had a change of immune suppression drug to assist reduce the skin cancer and I have had a series of boil like eruptions as my body gets used to it.

Finally in October I had a completely hospital and doctor free month that has lasted through to the end of the year with only check-ups and blood tests.

The hard part about this year has been waiting for the nose to be “fixed”. I had 3 appointments in June to make the prosthetic nose. I had the first 2, then the third was scheduled for the day after I was to have my knee replaced so we moved it by 3 weeks. The knee replacement never went ahead that day, it was reset for the following week, that week it was delayed by another week due to an eye infection from the radiation treatment. The infection was not clear by the following week, and whilst I was getting checked to see if it would go ahead I received a text to tell me my nose appointment was cancelled and that they would be in touch in a few months. The knee replacement was delayed again until August.

July was a month of dealing with the eye and ear infections, the skin around my eyes was dry and went like crocodile skin. By the beginning of August I was on top of it and it was sort of improving. Finally in August I had the knee replaced, I could hardly walk by that stage, and i was in pain all the time, it was just a matter of degree. The recovery from the knee went exceeding well, and I was riding again within 3 weeks. I went to the physio after 1 and half weeks and met the requirement for discharge. I don’t think they were too impressed that they had little to offer me. I guess the riding I had been doing left me in good condition and the muscles healed well.

Pauline and I did a number of cycle events during the year and in between my various treatments. Each of them presented their own challenges. Pauline went to Tahiti for a well-deserved break and some swimming, I couldn’t go due to

the infection risk. I recovered from my knee replacement and trained for the 4 hour ride at Hampton Downs, which I really enjoyed and remembered what it was like to go through the endurance pain and mental barriers. I was well pleased as my body seemed to remember how to deal with it, it was the longest distance I have done since transplant but quicker than the 108 km I did in the Cycle for Life.

Unfortunately Pauline’s bike did not perform in the Karapiro Flyer so I did that myself after calling her to see what had happened.

Date Event Distance Time

31 March Cycle or Life 108 km 4:04:55

13 April Karapiro Flyer 100 km 3:21:43

28 July Karori Gravel Classic 43 km 1:41:24

3 August Gravel Royale Rotorua 40 km 1:47:51

13 October Pedal4Prostrate 148.5 km 3:59:31

2 November Nicholas Browne 53 km 1:41:36

30 November Half Lake Taupo 75 km 2:08:12

The most difficult day of the year was August 3, it began well, we went to Rotorua to do the Gravel Royale, a 40km gravel bike race in the Redwoods, a forest area, well know for mountain biking. The event went well, I was actually leading at one stage, in front of the elite riders until a long 5km hill, where i was passed and the electrics on the bike played up, I was passed by another Ebike and Pauline up the hill as my bike shut down. At the top o the hill we change the battery, hauled in the other Ebike and race to the finish, I crossed in 1st, Pauline 2nd, a gold medal each.

Following the event and prize giving we went to a camp-ground that had a spa, where we could rest up. The phone rang and we were told Mum was not too good. I said I was coming up on Tuesday. I got another call a few hours later to tell me Mum had just passed away. We travelled the 6 hours the following day and I drove the motor home into the canopy of the funeral home. Talk about 24 hours of highs and lows, the only good thing was that Mum did not have to bury me, which was highly likely 2 years before.

I continued to work during all this time, I had to take a few days off without pay but managed to manage my appointments and time in hospital with my entitlements to sick leave and annual leave. I had radiation for 5 days a week for 6 weeks, all my appointments were at 7:30 am. I rode my bike to most of the appointments toward the end of the treatment I began to go to bed earlier as I was told I would get tired. The last week arrived, I had done the Karapiro Flyer 100km during the treatment and had booked a week off work after the last one which fell on Easter Friday. That week was nice, but I had trouble as I was so tired I slept a lot and it sort of made the week away in the Motor Home a bit difficult for Pauline.

As I have said I think this year has been more difficult than when I was in heart failure. It has been a week by week process and not knowing what is going to come up next. I am currently under the care of the cardiology transplant, renal (Kidneys), dermatology (Skin), plastic surgery (cancer removal), Oral Health (Prosthetic Nose) and oncology (cancer) teams. I have to juggle appointments and of course visit my GP for check-ups and prescriptions. I have to also have periodic blood check to ensure various levels are in control, particularly the immune suppression drugs, if they get out of kilter then I am susceptible to infections, (if the immune system gets to low) and rejection (if it gets to high).

I am enjoying life, I want to swim but cannot yet. I want to do more but have to manage things. I got to take my Grand-daughter to the Silver Ferns at last, as when I tried before I was unable to go. I played 9 holes of golf; that went exceptionally well. I have booked to go to the transplant games in the USA in July 2020, I need to stay well and be able to train so that I can enjoy myself; that is something to look forward too. Life post-transplant is great, life without transplant would not have been, I will get my prosthetic nose in January, I will ride around Mount Taranaki then too, I will enjoy our 9 days around the East Coast over the next 10 days, we will ride, hike, kayak, Pauline will swim, we will relax and read, nap when we like and explore and live life as it should be lived.