Heart breaking stuff

 "Dead man walking"

Our wee church was holding a plant fair, so Jean and I went down. We were not working there but felt we ought to buy stuff. Most people from the congregation know that I have terminal lung cancer. It is interesting how people see you. One lady did not charge us for morning tea. It was a fundraiser and we were happy to pay, but it was her way of showing grief and support for our reality I guess. Others greet you with the sad looking smile. Others I think are not sure about what to say, and just look uncomfortable. Some how you remind them of their own mortality. I was sitting by a walk way and one lady walking past just rubbed my shoulder. "Dead man walking" was apparently what the guards would yell out as they led a prisoner out to be executed. Sometimes since news of my lung cancer  became public it feels a bit like some body is yelling, "dead man walking". Everyone is a bit awkward.

Too much pain.

Mostly I have decided to just get on with life while I can, but just sometimes the pain of grief hits you. We have a foster daughter with severe disabilities. She is in care living elsewhere but comes home at least once a month. Her and I have special things we do. I only have to sing a song to her and she grins from ear to ear. I joke with her and she enjoys the joke. We watch a video together and sometimes we hold hands. The other day I was driving into town and saw a mother walking a severely disabled daughter. My mind went to our Pania and I thought of leaving her. The pain was so hard, my eyes filled with tears. By the time I reached the fire station I was back in control. 

I saw Jean my wife in the vege garden the other day, and I thought of her carrying on alone. Again it hurt deeply. We have done everything together for well over 50 years.

Today I spent  most of the day doing handyman stuff.  I'm tidying up a trailer. I invented a carpet stretcher. I did some lawn maintenance. I cut a length of carpet to lay tomorrow. I was using my workshop full of tools. To a tradesman tools are like life long friends. Each tool has history. They are loved and valued and have been with you through all sorts of adventures. It may sound weird, but as I turned off the lights of my workshop and locked the door, I thought of leaving my tools and my eyes filled with tears. It hurts. 

I am doing OK but just sometimes it hurts deep. Just sayin'. 

Well-meaning but difficult...

One of my sons came down with his three children and wife to visit from Christchurch. Vida is pulling Olive in the trolly with Dad Simon watching.  I think it was a bit hard for Simon. The reality of my situation hit home.

Grandson Theo on the swing with mother Stephanie.

Above and below. This is a Cricket/football field at Chingford Park. As a boy my siblings and friends biked and played cricket there. As an adult I umpired school boy cricket games there, coaching a school boy cricket team for seven years.

A pathway in Chingford Park. I paid a nostalgic visit there between chaplaincies. It was a favourite haunt when I was a boy. 

Everyone has a theory...

If you have ever had a sore back, you will know what happens. Everyone has a theory about how you can fix it. People will tell you about an amazing chiropractor in town, some system of massaging your back with tennis balls, some yoga exercise that helped them that is sure to help you and so it goes on. Everybody has a theory. I have discovered it is the same with cancer. I have lung cancer (mesothelioma) and have been told it will be terminal. But well-meaning people will tell you of some healing formula they are sure would save you.  Have carrot juice...(I LOVE raw carrots).. fast... eat heaps.... exercise... have vitamins x y or z ... follow some guru.... go to a faith healer...etc etc. I have a man, bless him, who says he will fast with me for 40 days if I want. He says that will starve the cancer, my body will start to use the cancer tumour for energy once it has run out of fat.  (I'd probably have to fast longer than forty days!)  And yet I have been told I need to eat more because the cancer is using energy. My muscles are wasting and eating more will help that.  I prefer that!

These people mean well, but it is so difficult. Doctors do know what they are talking about. I have seen my x-rays and they are scary. I can feel changes in my chest and breathing. If it was as simple as fasting wouldn't everyone be doing it? I am trying to live as positively as I can, to try to still be useful and make a contribution.  I can't drop everything and try all the theories offered. I will end up dead, having spent the last months of my life too busy trying to stay alive to truly live. 

Minimise it..

One lady who is battling cancer herself said to me, "Dave you've got too much energy to curl up and die, you'll be here forever." Nice... but energy doesn't really cut it. Another person said, "Nah Dave, you'll still be here in five years time, people like you don't die." .... ah.... wrong! I have seen people far nicer than me die early deaths. "Don't believe the doctors Dave, God decides when you die, they don't know!" That one is problematic. I have been with a family and held their young seemingly healthy baby's dead body in my arms. Did God take her? If he did he's cruel. There are too many issues and questions in my mind to simply say, "God rules who dies and who does not." I messed with asbestos, I did not know how dangerous it was and my work place did not know. Does God decide that he'll stop the laws of nature to save me? Another friend talked to me about all his encounters with asbestos, and it hasn't killed him. "Maybe it won't kill you?" Others tell of some relative who was given a cancer death sentence, but he lasted years. "You could do that!" But different cancer, different treatments - irrelevant to my reality.  "Stay positive Dave, you'll beat it!" So it goes on.

It is nice that if thoughts alone could save me, these expressions of hope would do it. But the reality is different.  I wonder whether these sorts of statements are expressions of the people themselves struggling to cope with the reality?  I believe to be mature I have to face the reality of the prognosis and deal with life on that basis.   I am taking Jesus' saying in John 10:10. "I have come that they might have life and have it abundantly." as my compass point. While facing this reality, how can I still live so that I enhance life about me with whatever time I have left? I intend to still live as positively as I can, while I can. I will try to stay as healthy as I can. My wife and I went shopping to buy recommended foods this afternoon. I do hope to keep up some sort of exercise. But I do want to live usefully as long as I am able. Pray for me to do that. Strengthen my resolve to do that. I would love to shy away from the reality of the prognosis and be like an ostrich, with my head in the sand, but I can't. These twinges in my chest, the fatigue and the occasional (at this stage) breathlessness and wheeze will not let me. 

I am doing some writing. One is about where I am at in my Christian faith. The trouble is I think I have completed it and I think of something else. The second is an abbreviated history of my life. I hope I get both completed. Wish me luck.

Support for the journey.

I have received a lot of support since it has become known that I am facing lung cancer and have been given a relatively short time to live. I share just a few.

 Doug

I have a friend who I have known since the late 1960's. He lives about 210 Kilometres from our home. Pretty much as soon as he found out about my condition he climbed in his camper van and drove to our house. He spent four days working around our place. He got a lot of jobs done in the process, but we also talked a lot.  The talking was important as I worked out in my mind what I was going through and what was ahead for me. 

Anthony

Is a man who has since 2008 commented on my blog posts from time to time. We only actually met for the first time relatively recently and it felt like we had known each other for awhile. We enjoy chatting. He made the time to come out one Sunday and we went for a walk together. The walk was good exercise. I need reminded that I can still do stuff and I need the encouragement to get out and do exercise. I received a photo of the chest x-ray the other day and was looking at it, noticing that at least half my left lung is non functioning and there is ongoing issues with other parts of my lungs. I figure that if I keep what parts of my lung are functioning exercised and doing their best to function, life will be better for me. So I appreciated the encouragement to go walking. But once again while we walked we talked. I probably bored Anthony to tears, but it was good for me once again to think out loud about life. 

Fire Fighters.

The people in my three chaplaincies have been good. They have hugged me, shaken my hand, asked repeated how I was going, offered help and been willing to talk and joke and somehow keep life "normal".

Robin

In the photo immediately above, the man looking down at his dog in the front row of the photo is Robin, one of the firefighters. He texted me and asked if he could come out. It was more like telling me that he was going to come to talk some time. We arranged for him to come one afternoon. He arrived and I was doing a little job on my trailer, so he assisted with that. We eventually went inside for a cup of coffee and we just talked. He asked questions and I answered. Again the process of sharing helped me feel like I was not alone. We also laughed and chatted about life, which gave a sense of normality.

Swanny and his paddlers

But then there was his good friend, Swanny, the man with the head band in the left of the photo. Both Swanny and Robin this week celebrated the fact that they had been firefighters for 35 years. Swanny is one of the most caring guys in the job. He rang me and told me that on Wednesday morning this week,  there was to be a group of fire fighters who would go out for a paddle on the Otago Harbour in a Waka (outrigger canoes) He said they would love me to come. I would not have to paddle, but the group wanted me to join them.  They are all from "Green Watch" They would give me a paddle if I wanted to paddle some of the way. He said he would shout me coffee afterward. The day was raining, but there was no wind, the harbour was as flat as a pan cake, safe for a paddle. So 11 firefighters and another Waka club member turned up. We took out two Waka, six paddlers in each and away we went in the rain. I had never paddled before so was learning. We paddled up the harbour for five kilometres, and turned around and came back to base. There was a couple of times when the Waka were side by side and the fire fighters, always a competitive bunch, aggressively picked up the pace. I struggled to keep in time.  There are six paddlers per canoe, three paddle on one side, and three on the other. You paddle about 12 strokes on one side, then the middle man yells "Huck" and we all change sides. Quite tricky for a new boy. (the poor guy in front of me got splashed quite a lot.)   It was a great time, though my paddling has room for improvement.  Then we changed into dry clothing, and all went out for a mid morning coffee. It was simply great fun. I paddled all the way which they declared a "gutsy effort." I am 11 years older than the oldest of the group, so I felt quite pleased that I am not yet an invalid. Of course sitting around drinking and eating gave lots of time for conversation. Today my shoulders and arms are pleasantly sore.

Tomorrow Blue Watch have invited me for a special morning tea.... the support goes on. 

 This is just some of the support I receive. Friends, family and many others have expressed support one way or another. It truly is a wonderful world and I am so grateful.

Reality hits home

 The "heart" refuses to accept what the head knows

It is interesting this weird journey. On Tuesday I went in to hospital and they pierced my side and took biopsy samples from the outer layer of my lung. On Friday I had the follow up meeting with the specialist. The biopsy confirmed that I have Pleural mesothelioma, a form of lung cancer. I knew that before the biopsy. Scan's, x-rays, blood tests and everything else told me and the medical staff that. But this was the final test. I was taking it in my stride, "there will be nothing new" I told myself. But I discovered that my inner being was still hoping that they got it wrong. I was, I think, hoping they would say something like, "Oh we are sorry, the biopsy showed it wasn't cancer, just something else." As the Doctor told me the results, it hit me, there is no way out, this is really my reality. I was surprised by the level of my disappointment. My head knew, but it seems that my "heart" was still hoping. I'm OK, but I realised by my reaction that subconsciously I had held on to a little bit of hope. 

Today my heart is catching up with the reality. We were skyping with my son and grandchildren in Scotland and I felt quite sad. 

I asked the doctor about the progress of the disease. It is an impossible question to answer. "9 months - 2 years, but do what you want to do soon." was the answer. "We are usually wrong and your cancer has been there for two years." 

So we had another discussion before sleep last night. We'll get there. 

Support everywhere 

I am surprised by the deep level of friendship and support. A firefighter rang up. He said he'd go for walks with me and he could drive me around if I get to the stage I can't drive. An ambulance man offered help and support. There's a lovely woman who drives a forklift at my brewery chaplaincy. She is a lively hard shot and was the first woman president of a rugby club in Dunedin. She clambered off her forklift and hugged me in a long comforting embrace. I am so fortunate to have the life I have and the variety of people around me.

We will be supported on the journey. For that I am thankful. 

A walk up "my mountain".

"My" mountain.

My mountain is Mt Cargill, a long time extinct volcano that is at the northern edge of Dunedin. There is a tall communications tower on top of it. There are incredible views from the top and three different walking tracks go up to the summit. I have often made it my walk of choice. One is from a carpark near the top, called the A H Reed track, named after a book writer and publisher who loved to walk well into his nineties. There is the track from a gulley in North Dunedin called Bethunes Gulley. This is the longest track. Then from a road that goes beside the mountain, the Organ Pipe track. It goes to the top past some very picturesque basalt columns and is the middle sized track in length, but very steep in places. I have most often walked up the Organ Pipe track, but sometimes used the longest track. I have, when I was really fit jogged up most of the way on both tracks. I have not been up there for some time. 

I HAVE to do it!

Since I have been diagnosed with lung cancer I decided that I needed to climb "my mountain" at least one more time before my lungs get really bad. So today after doing my workplace chaplain's visit to a brewery, my wife left for her voluntary work at the Emergency Department at the hospital, and I packed a drink and a jacket and drove up to the parking area by the start of the track. The first 15 minutes (today) is exceptionally steep, and I knew if I could do that I would complete the climb. (I used to do the steep bit in five minutes) So I walked up to the top of Mt Cargill, it took me 1 hour 15 minutes. I used to be able to do it in 35 - 40 minutes. My poor lungs were struggling. My chest was heaving and then there were many times I stopped to catch my breathe. BUT I GOT UP AND DOWN IN TWO HOURS AND FIFTEEN MINUTES with a stop at the top for photos, drink and lolly. I was pleased to do it and hope to try again another day. 

Tomorrow I have a meeting with a specialist and I'll ask if it is OK that I still push myself and stress my lungs. My theory is that what lung volume I have at any stage will be working at best capacity. It will not heal me but might keep my life reasonable for maybe a bit longer?

A fascinating cave part way up.

The "Organ Pipes" large basalt columns. They used to be a lot more impressive but tumbled during an earthquake years ago.

Steps - these got my chest heaving.

The communications tower at the top.

Otago Harbour out to the heads from the top.

Looking down at Port Chalmers and Sawyers Bay where we live.

Looking down on the "Pretty City" Dunedin NZ.

A cairn at the top with a brass plate naming the sights that can be seen in different directions. 

The bad news is...

 Sore back...

Toward the end of last year we were busy. We ended up putting in 80 square metres of vegetable garden, and I was trying to catch up on maintenance work around our acre. Then we also gave a little assistance to our daughter and son-in-law who were busy doing renovations in a room in their house. I ended up with a sore upper back, between my shoulder blades. I went to the doctor who said it was just muscular and prescribed pain killers. When my fingers started going numb he then sent me to a more specialist doctor who sent me for an x-ray. By the time I got back with that doctor my back was virtually healed. He told me that my back "is what it is" there is damage and age is taking its toll, "you'll have to live with it." Then he went on, "But I can see a little of your lungs in the x-ray and you have problems." Long story short I was sent for a chest x-ray and ended up spending a day in hospital getting various tests and scans.

Bad News 

We met with the consultant and in short simple language I have lung cancer brought on by exposure to asbestos when I was plumbing in the the late 1960's. It will be terminal, they cannot do radiotherapy nor surgery. I go into hospital again today and they will explore if chemotherapy will slow the process down. They, of course, do not give a time frame for the disease. I feel OK and not really breathless, though I noticed this morning I felt a little wheezy. As Frank Sinatra used to sing, "my friends, the end is near." 

Another "adventure".

It is an interesting experience, although I am just in the early days of that experience. Who do you tell and when? When he heard about it, a friend came down from 200K north of here, parked his camper van in our drive and worked for four days around our house.  We talked lots. Fire fighters have said, "There's 110 firefighters who would be out to help Dave." Gestures of support have been amazing. People have asked, "What is your bucket list?" - in some ways "To keep doing what I am doing." I have tried to approach it logically and philosophically. "I have been fortunate to have had all the years from 1970 - it could easily have happened earlier." "Well you have to die of something, I am 72 after all."   Then again I have had a weep or two. My wife and I are having extra hugs. At night in the dark with my mind racing I sometimes choke up and wish it was a bad dream. Another man who has battled cancer told me of heaps of "4 a.m. conversations" he and his wife had in bed. The other morning Jean and I were sitting having a Milo and a conversation at 4 a.m.! My friend and I were pulling a gate to bits the other day. "Do you keep the screws?" he asked. "Yes" I said, "I save anything." but then it hit me "Why? I'll be gone soon?" I look at my much loved tools and think they'll be dumped. I see and feel our acre, now bathed in sunshine, I love it, and my eyes fill with tears. I see my grandchildren on skype and again a lump comes to my throat. I am reading a theology book, still growing and being inspired by new thoughts. I bought two new books the other day, and then I ask why? This brain will be dead soon? Life always throws difficulties at you. You think it through and determine action to get through them, then solve the problem. But when I begin to think of this, you suddenly realise, there is no "getting through", there is a solid "brick wall". You have to just face the harsh reality and leave things as best you are able. 

On the other side of the coin I look back and think two thoughts. (a) I have done some useful stuff along the way. I have not been a waste of space in the universe. And (b) I have had a privileged life and shared the journey with some really lovely people. I have so much to give thanks for. Richard Holloway in his book "Waiting for the last bus." suggests that we see the end of life like crossing the line at the end of a race. We have completed the journey, we have finished our race. There is a part of me that senses that. I can see the end in sight, and I can finish with a sense of having run well. ... but ... damn it! Watch this space there will be lessons yet to learn about life.

Grandchildren

 Mokopuna (Maori for "Grandchildren")

Last Friday we left home and travelled part way toward Christchurch, a city way North of Dunedin, where our son, Simon lives with his wife and three children. Google tells me it is 364 Kilometres from our house. We arrived on Saturday morning and spent some time with them. Then on the Sunday we went around to their place and just relaxed with them for the day. 

I enjoyed playing Jenga with my Grandson. I enjoyed sitting in the sun just chatting with him... he turns 8 in a few days time. I enjoyed Jenga with our grand daughter who is 5 years old, and getting to know the youngest in the family. We simply had a good time relaxing on a sunny Sunday with these children. Then on Monday we packed up and drove home, calling at my brother's for lunch at about the half-way mark. 

We had our Grandchildren from Wellington staying over Christmas, and we regularly Skype with three grandchildren in Edinburgh. So in all we have eight grandchildren all living at a distance from us - Christchurch, Wellington and Edinburgh. Because of Covid 19 and the mixed up 2020 year we did not really catch up with them last year as much as we would normally. As I drove home I could not help but think about how very different they are and yet we love and enjoy each one. I get jealous of people we know who have grandchildren living close by, but that is the way it is. I just thought I'd share some photos.

Edinburgh three.  Maori-Samoan/Polish children with a Scottish accent. Full of life!

Wellington  Sister and brother... creative... energetic.... enjoy NZ bush. (With their mother)

Christchurch  three....