In March we went to Hill End, to Mudgee to see Dad, north to Bellingen to Peter and Jo-Ann's place. Peter and Jo-Ann had previously married, this was the occasion for family and friends to celebrate with a party and a Buddhist-type ceremony. Peter was still fighting for custody of the boys.
Family Four visits to O'Neill. More infections, more physiotherapy at Meriton St. Clinic.
During the year Sean came to live in Nowra, to work for a while in a computer shop. He stayed with us for a couple of months at first spending his evenings out and going back to Bega at weekends. He was oblivious of the fact that it concerned us that he had a long shower every day and put on the iron every day to iron ONE shirt. Ian had to switch on the electrical booster as the solar heater could not cope with the drain on the hot water. Sean was unaware of the true value of power and water, having grown up in an age when they were taken for granted as if they were limitless. It was the stress on the septic system and the irresponsibility not the cost in money terms. When Ian mentioned it, Sean put $20 on the table to cover the cost of the power! He soon made other living arrangements, having parted with Karen. He and his new girlfriend took the children to the Gold Coast, driving there in one day. Ian said "Do yourself a favour and go to Lamington National Park. It's a complete contrast to the Gold Coast and so close." It didn't happen.
We were involved in protests about a proposed road through a bush area at Bomaderry Creek.
In October we flew to Adelaide went across the Nullarbor Plain by bus, saw whales in The Bight, which was excellent. I would NOT have driven across Nullarbor Plains and was very glad to see it from a bus. In Perth for trips to Albany and Shark Bay, the bus filled up with people more concerned with the next meal break which was not so good. Ian commented on the "verbal diarrhoea". We had trouble with the air-conditioning in some hotels so borrowed a screwdriver to open the windows. On our return we flew to Adelaide, caught the train to Broken Hill for a few days (great) then by train to Sydney, and stayed overnight in Bronte to meet Emiko's parents.
Soon after we got back the APS came for their Christmas picnic to our minimum-care bush garden. Being involved with local groups with environmental concerns we were learning better solutions to many problems.
1996
Ian had been very lethargic since our return from WA and unable to do much without getting breathless. He had been doing the vacuuming, hanging out the washing, making the tea, serving the dessert and washing up as well as pottering in the workshop and the vege garden. Now he was doing little. He was also feeling the cold much more than usual. At first he put it down to advancing years. He tried taking half an aspirin each day as I did to "thin the blood", but this caused staining of the sputum. He had regular blood tests monitoring the myeloma. His red and white cell counts were very low, the tumour cells had risen to around 12. He had chest pain which he thought was pleurisy. The doctor did not think so and sent him for a bone marrow test which showed that the myeloma was no longer indolent eight years after the first suspicion. Ian's cataracts were ready to be removed but he was advised not to go ahead as he was not well enough but to start a course of chemotherapy (melphalan and prednisilone, a form of cortisone, also prescribed for asthma) and painkillers. His resistance plummeted, he caught a flu, was prescribed an antibiotic and spent some weeks nearly bedridden. He needed help to turn over in bed.
Family, neighbours and friends helped out with shopping, woodchopping, cooking and so on. The neighbours gave him home-made soup and lemonade as he could eat little. I had to help him dress and undress, see to his medication and help him change his position. At night he would thump on the wall when he needed help. The prescribed painkillers caused constipation and indigestion and made him hallucinate and he called me in to talk to him. His spine showed marked curvature and it was hard to get comfortable even propped up with pillows. I had always kept diaries of our trips, now I began a careful record of his general health problems, his medications and his reactions and until he found the most suitable ones also other things which upset him.
The theory was that although the chemo killed all types of cells, the cancer cells were kept at bay for a while (usually about four years, about 12 courses). Unfortunately vital cells were also reduced but the body produced more. When the red and white cell counts were too low he would need a blood transfusion.
Glen and Kylie visited in May. On rare occasions when Norna rang she did not speak a word to me except "Is Dad there?" We had not seen her for about eighteen months, Sean lived in Nowra but we seldom saw him. Ian often did not feel like getting up to the phone but usually made the effort if Sean rang to keep him informed about the test readings. Sean suggested we should get another opinion and different treatment.
When Ian was really ill Norna came down for lunch. She wanted Sean, his new girlfriend and her little son to come at the same time but Ian put his foot down about that. He was not up to it, didn't really want any visitors. When they were children Sean and Norna had fought bitterly both physically and verbally. Ian said "One at a time" as he felt unwilling to cope with them. He felt they were badgering him. It hurt him to move so he took extra painkillers to get him through the visit. Norna said "Why hasn't your doctor done anything before this? Hasn't he ever heard of prevention?" I felt so angry at her stupidity. On her way home Norna told Sean "Dad isn't too bad. I don't know why Dorothy wouldn't let you come". Sean rang and wanted to come down immediately. Ian said "Not tonight". I passed the message on and Sean swore at me over the phone. "I agree with Norna, you're nothing but an f...ing b ...". He hung up. Did he believe that Ian had no right to say no, or that I had lied to him? Sean and Norna were both in denial.
Norna rang the next morning and Ian dragged himself to the phone. After a while I heard him saying "Norna I am ill. Leave me alone". I saw he was trembling and the tears were streaming down his face so I took the phone and said "Norna you have seriously upset your father. You are so selfish, thinking only of yourself" and hung up while I attempted to calm and support him and help him compose himself. Later I rang Norna and said "I don't normally hang up, but you have really upset him and he is ill." After a pointless few minutes I hung up again. There were several nasty phone calls and Ian would not talk to either of them. He said "That was the worst weekend of my life." It resulted in a lot of distress to both of us and we asked the GP if he would explain to Sean and Norna that he was ill and only wanted to be left in peace and should not be stressed. Norna asked the doctor to inform her direct about Ian's health so she didn't have to go through "a third person". The doctor declined as the request was outrageous and it was Ian's choice. I would protect him if possible from any more of this.
At this time I wrote in my diary:-
22nd July Ian needs all his strength to cope with each day. He has lost 5 kg. Hospital is a possibility, but of course he would rather be at home, in an unpolluted atmosphere, sitting in the sun, reading a little, watching the birds in the garden, and ordering what he fancies to eat. The doctor talked about stronger painkillers when they become necessary. I said "I want him around but not if he's suffering."
Ian and I talked about his illness. We both shed some tears. We have known this day was coming but are not ready. It's still a bombshell. He said "I'm not afraid to die but I can't stand this hassle". I said "The good times we've had together far outweigh the bad times. We'll plan more trips and keep positive and I'll try not to allow any hassling. We'll do everything possible to keep us both healthy." The stress was more exhausting to him than physically activity. While Ian was having a nap I went next door and suddenly found myself crying on Phyl's shoulder.
Karen and John who planned to marry, called in on their way from Wollongong to Bega with Glen and Kylie for a brief, pleasant visit. Glen offered to chop wood, but Peter had been down for a visit with his youngest son, Simba and already done it. We found that John had wider interests and was introducing Karen and the children to new concepts which still seemed pretty limited to us.
Sean realised he had gone too far with his outbursts and when next we saw him a few days later he said so, but he was indignant that we had allowed four visitors but not him and Norna together.
At this time we bought a nebuliser which would administer the asthma medication better and more slowly than the Ventolin inhaler. We also got heat packs to help relieve the pains in his side. Ian looked up the names of Funeral Directors in the phone book and the next time we went shopping he went in and talked to the director to see what was available.
Ian joked to friends about his "Termite-eaten bones". He did not complain about health problems nor dwell on them but did not hesitate to tell me of his worries and fears. He accepted the fact that he had a limited life-span and tried, with my encouragement to make the best of each day and use the help that was available to make it easier. He acknowledged the prognosis but did not want to know the details. I did. I knew I would have to learn to cope with increasing dependence. I did not want to panic when something unexpected happened. I wanted to know what to expect.
I did this in a matter-of-fact way.
Ian needed all his strength to cope with each day. He still had general discomfort, indigestion and constipation. He used micro-enemas and there was the possibility of having to go to Casualty.
Slowly he began to improve. A month later he sat out in the sun in his pyjamas and was whistling! And when he was well enough began work on "treasure chests" for the museum and even hung out the washing for me.
I decided to contact the Court House to request Mediation with Sean and Norna so that there would be no repeat of the distressing episode. Ian did not want me to endure the brunt of the discussion and insisted on coming. He rang Sean to say so, but when the day arrived he was not well enough. He dictated a short paragraph about his wishes and stayed at home with some friends who chopped some wood and got him some lunch. At Mediation Sean and Norna said that their father had changed and had suddenly been converted into being a "radical Greenie" (perhaps a reference to our desire for a clean atmosphere) and that they had not been told about any health problems other than asthma (although Sean had flown up from Tasmania six years before, telling Karen Ian had cancer!) Norna had a long list of grievances, mainly things she did not like about our lifestyle and things she wanted. I told them of some of the things which I knew had bothered Ian, but which he never directly confronted them with. So long as they did not try to involve Ian directly in what they were doing he said little. Norna said she liked to dress well and look good, which at the time was a completely black outfit. I said "If you want to spend your money on clothes and hairdos, that is your business, but don't then expect us to buy you a fridge." I suggested that Ian was now able to be the person he wanted to be as he had always been interested in the environment. They both said Ian's past had been a "hidden thing" and that he had been brought up by an aunt. Sean suggested I should not even tell Ian what Norna had said. We agreed to keep confidential the matters discussed, as Norna suggested I would "bad-mouth" her to my friends, but Ian was not a signatory to the agreement. Most of these matters were touched upon in later conversations with Sean in the following weeks and Ian did not feel obliged to keep them to himself. Ian could not believe the statements they made, especially about his background, but said "They were never interested". I felt a need to express some of my disgust at least to my daughter and Ian talked a little to close friends. He often said "Where did I go wrong?"
A couple of weeks later when Ian felt up to it, he rang Norna and she went over all the same things again. Ian listened passively and tried to be receptive to her view. In the end, after an hour, he said "I'm ending this conversation." It was pointless. Norna told Sean "I couldn't get through to him." She was not interested in what he wanted. She had taken nothing on board from the Mediation. There was absolutely no change in Norna's attitude. Ian and I were members of the Greens for a period and gave out "how to vote" cards, but I don't think Sean and Norna were aware of that.
Ian said both Sean and Norna were blaming me for the breakdown in their relations with him, although they had always ignored his wishes and feelings and did not accept what he said. They obviously closed their minds to what he said and what he wanted. It amazed me that they were so little interested in anything but themselves. It was plainly all one-way. The underlying problems were ignored rather than solved.
This was the last straw. We had talked about changing our wills. When Ian was well enough we planned to go to Kiama, and on the solicitor's advice left something to the five children, in the event of us both dying at the same time, but the majority to APS. I would have preferred Bush Heritage, but as the chances are I will outlive him, I can change the details again later. Our children are now all adult, and had chosen their lifestyles, only the grandchildren need to be provided for (educated).
Ian would have liked another trip to Scotland, but when it came to the point, it was too difficult to get there. Maybe somewhere closer. I commented in my diary that Ian was looking very skinny when undressed. Intimacy was getting more and more exhausting but he remarked "I still get the urge." Our attachment became deeper as other aspects of our relationship were explored and shared.
Later in the year Sean told Ian that Norna wanted to talk to him. Ian said "The ball is in her court. If she genuinely wants to." She rang later and I said "I'll see if Ian wants to talk." Her answer was "Don't bother" and she hung up. I told him "Norna rang, but hung up. Sean will be on the phone immediately" and so he was. Sean said I had caused a problem by telling Ian some of what Norna had said at Mediation. At the time Sean had said I should not tell Ian but he didn't say what I should have told him after a six-hour session! Sean suggested that Ian and Norna alone should have Mediation, but Ian knew that Norna would go over again the same petty grievances he had already heard and that he would not be able to rebut her accusations. He did not have the strength for a confrontation with Norna, believing it would end with nothing resolved. There would be no meeting with Norna unless I was there to support him. His passive nature did not equip him. He preferred to opt out. If they had looked honestly at their behaviour and Ian's reaction they would have seen that Ian was not well enough to cope with any badgering. He was too vulnerable.
Later Norna (through Sean) proposed taking Ian out to lunch in Kiama. Sean said he would drive him up and prevent Norna from upsetting him, but Ian declined unless I was invited. Ian was being far more assertive with his children. He decided to save his energy for things he considered rewarding and avoid what was futile. There were other proposals via Sean that Norna wanted to take Ian to lunch or dinner at a social venue but he never agreed. He was never asked what he wanted.
Sean also said that Norna wanted to turn back the clock to when she and Ian were friends. She wanted to give back the money for the fridge. Ian said you can never undo a deed and it was not so much the money that had upset him but the way she had gone about getting it, behaving as if it were her right.
Ian felt that in his ignorance, he had failed to make them aware of his environmental concerns, and the fact that they had chosen to follow a life-style antagonistic to his beliefs was his fault. We both believed like Ghandi that the world can provide every man's need but not every man's greed if the press of population growth and higher expectations could be controlled. I said Sean and Norna were grown up people, capable of making their own decisions, seeing the long-term consequences and were no longer his responsibility. It was equally Jean's job when they were young. For Ian's sake I tried to keep some kind of working relationship if they wanted, but not allow them to hassle Ian or drive a wedge between us. They had signed an agreement at Mediation to put his wishes first but this had never happened. I don't think they understood what this meant.
We seldom went dancing as Ian was not really up to it or any other energetic activity. I missed it very much but there was much more to life with Ian and I had found many facets within him which were rewarding. I had to tell myself that we had such a lot of good memories, had done things together which we would not have done alone, and now developed other forms of intimacy and communication and new areas of knowledge.
I booked to go to O'Reilly's, needing something pleasant to focus on and hoping Ian would be well enough to enjoy it. For once we were doing it in style, our days of roughing it were over. We were glad to have done so much together while we could. Ian wasted no time worrying about his health and thinking about himself. He bounced back with his usual resilience and was once again involved in voluntary activities in the community, joking about his termite-eaten bones and whistling in his workshop while making things for the museum, family and friends and working in the garden. As the year went on he regained some of his strength.
We were encouraged by this to go to O'Reilly's, travelling slowly and calling on my cousins, also Peter and Jo-Ann and other family on the way. Peter had had a break from doctoring, but was now at Port Macquarie and Kempsey hospitals. At one place Ian left the mask and tube from his nebuliser and had to make do with the inhaler until our return trip. Of course we had a wonderful time. We had marvellous views of volcanic scenery from our balcony, excellent food, remarkable trips in their four-wheel drive buses, lots of birds, possums and paddemelons everywhere, some steady walking, the history of the O'Reilly family and limitless conversations with interesting people. A great finale to a less than great year.
