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Cancer replaces Heart Failure.

It’s been 15 months since I had my heart transplant. Life has returned to some normal patterns, going to work, exercising, going out, and going away. The motor home has changed our lives. We can pop off for the weekend without worry of finding accommodation, if it’s wet it is OK.

We have participated in a number of cycling events, the first was on Sunday 7th October at Hampton Downs, a car race park which provides a circuit of 2.7km. Our team was named 2nd chance. This event was 4 hours long that Pauline and I shared 1 hour about, I started. The speed was amazing, the track was so smooth, and there was no vibration or bumps. I was using the Ebike and Pauline was on the road bike. That allowed me to use the bike at full power. We managed to do 47 laps in an average time of 5 minutes 9 seconds for each 2.7km lap. It was nice being acknowledged and interviewed, so that the donor story can be repeated and heard many times.

We then followed that up on the 14 October 2018 with a ride from Pukekohe Park Raceway called the Ebbett Pukekohe Counties Cycle Classic this was an interesting challenge, rather than a race it was a time trial, they gave an average speed and the closest to a pre-set time was the winner. The correlation was a bit off and as a result Pauline was second female, however the other guys in the event couldn’t contain themselves and as such I was the winner. It was a bit harder than actually racing, holding back, working out how much to slow down to bring the average speed back down, how to speed up to bring the average speed up, the average speed given was 24.6 kph. Over 52 km this equated to 2 hour 6 minutes 49 seconds. We did 2:05:30 and recorded 51.47 km. It was a fun and the event competition between the ebike riders was intense.

The following weekend we went to Woodhill Forest hoping to ride through the forest roads, they were unfortunately closed to the public and we didn’t want to do the Mountain bike trails so we rode to Helensville and back for the day.

The following weekend we went to the Coromandal to ride part of the K2 race. We did from Whitianga to Coromandal a 42km ride that contain 2 significant hills. We were entered into the Ebike category of Nicholas Browne Challenge in the Ebike category. We had to consider battery conservation due to the size of the hills, two category 5 hills, the steepest there are. Unfortunately for me the other guys in the race had spare batteries so could use a higher power level and not worry about running out of power. We had fun, Pauline and I stayed together until the last big hill where she powered ahead of me due to her strength. I went up the last hill with some care, as my controller was a bit odd and had stopped recording y speed. I thought I was running out of battery event though it told me I had some left. When the sign said 500 metres to the top I breathed a sigh of relief, only to go around the corner and have the bike stopped dead at the steepest corner. I fell off as it was too heavy to pedal and walked up. I had about 2-300 metres before I could get back on, fortunately the rest was all downhill. I managed to get to the finish line and was pleased and only ended up 5 minutes behind the first female ride, being Pauline.

I had been looking forward to swimming again and set my sights on doing the Around the Island swim, a 2.4km swim we helped organise with Auckland Central Masters Swimming. I did a wonderful interview with the New Zealand Herald. Sadly during the week the cancer on my nose deteriorated and turned into an open sore. No swimming allowed with an open wound. So next we went north to Whangarei and did another bike ride.

This bike ride was a small local affair. We used our ebikes, and it was interesting the reaction we got from other riders on this one. We had fun and apart from comments from a group of snobby riders we finished with.

Pauline has decided she wants to do some triathlons. I am doing a lot of riding as it what I can do at the moment. I have put together a run program for her, it is interesting as she has never run before, so I have designed something very gentle for her and she is really enjoying it. I go on the bike with her while she runs sometimes. She is missing me not being able to swim, as I am, this is hard for both of us. It was a special day when Pauline lined up for a little triathlon at Mission Bay and I watched her complete it, finishing first in her age group. Look forward to the next one in February.

In early July I went to the doctor with a small issue on my nose, I suspected it was another skin cancer. When he looked at it he determined it needed to be cut out and referred me to the hospital. Over the next few weeks I waited as it grew. I went back to the doctor as this thing grew at an alarming rate and he called the doctor. I saw the heart transplant team for a regular check-up and they expressed concern. Toward the middle of August I managed to get an appointment with the skin specialists at Auckland Hospital. As soon as they saw me they scheduled the 4th September, my birthday, to take the cancer off and do a biopsy of other issues that had arisen since, they also took a few lumps from my shoulder they had identified. So I came way form that knowing that there would e something to follow.

So on the 14 November I was admitted to Middlemore Hospital to remove a cancer in on the end of my nose, and also to remove the one they had already had a go at but failed to get it all, and take some other ones out of my eyebrows on both eyes. This proved to be somewhat more extensive than previously thought. They tested samples throughout the procedure and kept going until they got clear results from all the samples. They had to take a flap from my forehead and fold it down over my nose to provide a skin graft to the end of my nose.

For the next week I was in hospital, as the graft had a good blood supply but the blood had nowhere to go and the small blood vessels had to reform to take the blood away. At the beginning they left it to bleed. I would be lying there with blood dripping through the bandages and all over my chest and the bed. I gave up calling the nurse when this started and just waited to be attended to. They then began to use leaches to deal with the blood. I was started with one on and when it filled up they replace it with anther and so on. Then they used two together hour on and hour off.

It was interesting the variation in the skill of the nurses to handle these little critters. They had to position them so they attached in the right place and settled into their work. Some nurse were able to achieve this with relative ease, albeit some patience, other had no end of trouble and they would jump off after about 5-10 minutes and make a run or wriggle for it. They are somewhat like a slug, feed every six months or so and sterile, only use once. When they were fill of blood they went to sleep and just lay there until removed. They more than doubled their size when full of blood. They were then euthanized.

So in all I was in hospital for 2 days less than when I had my heart transplant. I had 3 blood transfusions and an infusion of iron due to the loss of blood. I was discharged eventually at 8:45 pm. I was scheduled to have a reconstructive procedure on the 12 December to have the flap removed and nose fixed. We received a call 3 days before and asked to come into the hospital for a chat about the procedure. We were told that they had not got all the cancer and subsequent tests of all the tissue show there was more cancer to be removed.

On the 12 December I underwent the next procedure, instead of corrective surgery they took more tissue and cartilage out. This time I was only in hospital overnight. It was relatively simple process and did not hurt, even though there were 9 stiches (coloured blue) around my nostrils. I had ointment to apply 2 times a day and learnt how to apply dressings so that I could go to work and keep it all good. I was scheduled to go back on the 3rd January to have the final reconstructive surgery performed. On the 31st December we received a call to go into hospital to discuss the procedure, as my surgeon would be on leave, with a new surgeon. I asked if everything was on track and the co-ordinator said they would explain when we were there. I asked if they had got it all and was fold no they hadn’t.

So on New Year’s Day 2019 to Middlemore we went and met the new surgeon. She was great and told us what had been discovered. They had to take more tissue and cartilage out. How much they do not know. They will remove again until clear samples are received and a bit more. They will leave it open and on the 14th January the results will be available to determine if it has all been removed. At that stage they will decide to take more out or to reconstruct the nose, and so it will go on.

We have had a lovely little Christmas at home. I had my Dad stay at my place with his wife Lurline for the first time, they last time Dad stayed with me was the night before he married Lurline 39 years ago when I was 24 years old. We had Leeanna with us for the day, we had lunch together before Dad and Lurline went round the corner to her sister’s place for dinner. Then Pauline, Leeanna and I all mucked in and made dinner of us, was lovely.

The next day my son Jason came over with his wife Vanessa and 2 grand-children Tyra and Marko. We had lunch and played board games for the afternoon before going to my brothers place for a BQQ with his family and again my Dad and Lurline. The next day Pauline had to work. I picked her up after work and we went off to Snells Beach in the motor home. We went for a bike ride around the area on the 28th Pauline’s Birthday and had a mostly wonderful day together. On the ride I went up a hill too fast and left Pauline behind, at the top of the hill was a left turn onto the main road. I was away down the road, it was all down-hill when I figured out she was no there so I stopped and the phone rang and had to go back and get her.

We went to Matakana the next day and did a ride along a trail there and visited a friend who was on lifeguard duty at Omaha Beach. We went from there to a vineyard at Mangawhai, where they had live music until 7:30 pm. When we left that we went to my Sister Heather place for the night. The following morning we rode to see my Mum. This was 77km round trip, as we have given ourselves a spare battery each for Christmas for our Ebikes. I was a bit unsure how I would handle it.

Mum has dementia and is deteriorating, she often does not seem to recognise us. We sat with her for a long while, during which she had lunch. It was pleasant just sitting with her helping her have her lunch as she had done many times with me once upon a time ago. It is very hard to go through this experience, harder than the issues I have had to confront, at least I have options, can see an outcome, can see some normal again.

As we enter this New Year most people are making plans, I find myself readjusting mine. I cannot see myself being able to swim this summer as planned, I am now reassessing the plan to participate in the World Transplant Games as I will not be able to do the planned training for it and do not know where I will be physically at that point. So again I enter a period of unknown, will I be able to continue to work, I know I won’t be able to be physically active for at least a month now, maybe longer. Again the future is unknown, what I do know is that this fight for life is not finished yet, it is not time to go, for I have too much yet to do.