Why?

Really? Who are they talking about?

I attended a farewell function the other day for a staff member of the Night Shelter. When she saw me there she was ecstatic."Thank you for believing in me!" she kept saying and hugged me? Another lady there, she has been a well known public figure, when she left came up to me and gave me a big hug and kiss on the cheek. I have had an occasional acquaintance with her over the years, various conversations about things, but she said her farewells like we were deep friends? I featured the Fire station presentation on my facebook page and I received quite a few very positive affirmative comments. One fire fighter who has moved to a different part of New Zealand said, "An amazing man!"? My wife and I were walking down the main street of town and we saw coming toward us a woman who used to be in one of my chaplaincies. When she was there she was in a job where I had to keep in touch with her, so we had quite a few conversations over a number of years. She left the job many years ago and Jean and I have bumped into her just occasionally over that time. She knew of my illness and greeted us warmly asking me how I was. I simply said to her, "It's terminal". She stopped and said, "Can I hug you?" "Yes" I said. So we hugged tightly there in the main street of town with my wife looking on. She stepped back, "You are such a good man. I love you very much. I really do. You have been so very important in my life." and with a wave headed away. I was stunned. How have I been "important"? Affirmative statements continue to come my way. I struggle to understand "why?". 

I am writing my life story because in time hopefully some grandchildren might be interested. I was a troubled child. I was never top of the class in anything, with no outstanding talents in any area. I have for my whole life been full of self doubt, struggled with confidence and had a shy disposition. My uncertainty has dogged me in everything I have done, I have struggled to have confidence to fully assert myself. I second guess myself constantly. My wife has had to back me up and work alongside to ensure I got things done. How am I an "amazing man"? Why this deep affirmation? AND when will they see the real me and see the hollow shell? When will they actually find out I am not all I am cracked up to be? It baffles me. I have no real outstanding talent to admire? 

"You gotta walk it on your own"

I have been astounded by offers of assistance as I face my terminal cancer issues. At the function at the fire station the other day, heaps of people came up saying they want to "Have coffee some time." People who could not make the function actually invited me out for coffee or wrote expressing the desire to catch up. One man offered to drive me the five hours to Christchurch for my treatments and back. All sorts of offers came my way. I am so grateful for the expressions of support. I will take the opportunity to catch up. But I have realised something profound. While these people can offer you support and practical help and make you feel less alone, there is a sense that when you are looking down the barrel of the actual ending of your existence, and the suffering that may go along with that, you are in fact alone. The old song that said, "You gotta walk that lonesome valley, you gotta walk it by your self, ain't nobody else can walk it for you, you gotta walk it on your own." is quite true. I have to do my own "processing" in my way. I need to empower my courage to deal with the realities. Nobody can do it for me. Sometimes I think it requires time. Elderly people do it slowly over years. They go to their mates' funerals and know their's is coming. Eventually I think they even long for the end in some cases. Mine will be a pressure cooker shortened version of what older people process more gradually over years.  .... I'm just thinking out loud....but it is stuff only you can do. The other day I had a well meaning phone call from a man. As he talked there was part of me that was saying, "Go away and let me spend time stewing! Do not tell me what I should be thinking." 

I recall a description of an Irish family at the death of a member. Everyone is in the room, there's noise and story telling and the idea is that these people want to let the dying person know that they are not alone to the very end. I wonder what the dying think of that?

I have often been with families at bedsides. Then the nursing staff want to wash their loved ones or attend to them and gently ask the family to wait outside awhile. After a short time a nurse comes out and says, "I'm sorry, she/he has just passed." It has happened to me often. Medical people have also told me that in their experience this frequently happens.  Somebody I read commented that many people would rather just die alone. "It's a private thing they would rather do alone." I am far from dying yet, and I have loved the conversations and company I am enjoying, but there are times that I can understand that. Alone time to let your brain and emotions catch up seems to be necessary, in life and in death.

Special BBQ

 An invitation...

A few weeks ago I had a phone call from one of the Senior Station Officers at the Fire Station. He said he was planning a special BBQ for retired fire fighters to come to the fire station and spend time with me. So today we went, Jean and my daughter and son-in-law. There were past and present fire fighters and a group from the brewery where I am chaplain. We mixed and mingled for awhile then ate the food. Then there was a speech. They gave me a special "presentation", an envelope with a card and a very generous donation of cash in it. The presentation blew me away because if you are associated with fire fighters, you earn your helmet and they are not given away lightly. Normally in NZ, a fairly secular country, the fire chaplains, if there is one, are just very much part time, and not given a helmet. It is a meaningful gift, a sign of your inclusion. It was a happy time.

What price life?

 New Zealand medical scene

All in all we have a reasonable public health system in New Zealand.  When I grew up and began work it was assumed that if you needed treatment you got it, and that medical health insurance was not necessary. There have been at least two changes in that regard. First medical treatments have expanded. When my dad died of heart failure in 1964 he probably died of issues that today he would have received surgery for, or other treatments totally unavailable back then. So the Hospitals are offering a greater range of treatments that once were not around. This adds to the expense for the tax payer in a public health system. So often people find it difficult to get timely medical help in the Public Health system. It feels like it is a truck with a small motor having to carry too big a load. Secondly the conservative political party, I believe have wanted to encourage people to get private health insurance, and they have tended to defund the public health systems when they have been in power. It is not so much reducing money going to health, but rather not keeping up with the ever rising expenses. So patients often find there are sometimes significant delays in getting public funded health treatment. More and more people have insurance and "go private." 

So when I was diagnosed with Mesothelioma, I was referred to the Oncology department of the hospital from the Respiratory Department. We then received a letter saying that the estimated wait time to have a consultation with an Oncologist would be 7 weeks, which is a long time when you have a terminal disease. We decided to "go private" and have a consultation with a private provider. We have in New Zealand an Accident Compensation Corporation which is a government agency that provides compensation and health funding when there has been an accident at work or elsewhere. It reduces people suing each other, and lawyers getting richer.  Because my Mesothelioma was caused by exposure to asbestos in the workplace the ACC got involved and offered finance toward treatment. They have also given me a sizeable payout by way of compensation.

Private Oncologist

 So we have paid for a private consultation. The Oncologist who was a specialist in my issues, was part of the St George's Hospital Cancer care unit in Christchurch five hours north of Dunedin. We drove north to see him, with my daughter and son-in-law joining in on the consultation. 

He checked me out and estimated that without treatment I could live for twelve months. Then he said, with chemo therapy I could add three months to that. My gut reaction was, "Is it worth it?" especially when you take into account the misery of Chemotherapy.  My family said, "Well we would be glad to have you around for another three months!" The oncologist did say that the chemotherapy offered for people with my condition did not have the full range of bad side effects chemo is notorious for. ACC would pay for the chemotherapy. But then he went on to talk about Immunotherapy. It was offering good results for people with lung cancer and other cancers. It had not been used much for mesothelioma, but he told us he was sure it could give a possible twelve month to two year extension of life. BUT the cost of the drug would be $70000!  We were flabbergasted.  We were excited by the possibilities but felt that was out of our league. Again I questioned it saying that I did not want to leave my wife in poverty. I once again got told to "Think about your family! We might want you around! Think of all the good you can do in that time." Well we came away with questions on our mind. Decisions have to be made but where can we go? The Public health system would offer chemotherapy, but certainly not Immunotherapy. Then we learned of the big payout from the Accident Compensation Corporation. We could pay for the Immunotherapy and have plenty left over! 

Decision made...

So tonight I have sent an email telling the oncologist that I will take on a combined chemotherapy - immunotherapy regime. I know I am in for months of not feeling well, with quite a bit of uncertainty about the result. But I guess life is worth it? I feel like I want to make sure I do the best with what life I have left. I have heard of people facing terminal cancer deciding to take their own life. I can understand that feeling. I am NOT thinking of it, but sometimes I think of what is ahead, and know I will have to face difficult times and will have to grin and bear it. It will be difficult. Hopefully I'll deal with it with dignity and courage and not make it any more distressing for those about me than it has to be.  The other day with all the discussions to and fro I got a bit stressed and went outside and kicked a bucket, a wheel barrow and anything else in range. Then I gathered myself and became sane again.  

People help....

My son from Christchurch came down at Easter and worked around our place with me and my daughter and son-in-law. These two also moved furniture and we laid carpet in yet another room. We had a hedge running down the side of our section. I hate cutting it, and I know that when I am gone, Jean will never be able to cope with it. I suggested that we need to rip it out and replace it with a fence. Jean mentioned it to a lady at Church whose son has a big excavator. He was going to be working on the land next to us. When we came back from visiting the oncologist in Christchurch we discovered he had ripped the hedge out and disappeared it. The lady had some fence posts so told him to bring them around to us. He arrived the next morning with eight fence posts and with his excavator, just pushed them into the ground in a line. 

A fire fighter had often mentioned that he would like to come out to help, so yesterday he arrived and we both completed a fence with sheep netting on it. I had done a little fencing as a teenager on my "uncle's" farm, but he had as a 19 year old had worked as a fencer. He did most of the work. Every time I went to lift something heavy he would tell me off. Today I made a little gate for the end of the fence.

 

We have laid carpet in two bedrooms.

The little gate I made and installed today.

The fence that at least four of us have had a part in erecting.

On Sunday the fire fighters are going to host a BBQ at the city fire station for retired fire fighters to come and spend time with me. I am moved by the expressions of support and friendship coming my way. I am so fortunate.

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.