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.