In July Ian hurt his shin, taking skin off but did not think it was serious. We went up to Sydney to the Wood Show, but his leg was getting worse. After about a week he had to go to Casualty in Nowra to have it Xrayed, get an intravenous antibiotic and get it properly dressed. Their tests showed his red cell count was half normal and the myeloma up to 72 and even the ESR had risen.
When Alison turned 21 Norna tried to get Ian to go to Wollongong to dinner but he declined. About this time Norna broke up with Rick who was still "playing around". Sean was telling us from time to time about new girlfriends.
In the meantime Karen had qualified to be a Home Carer and one day when she called by she suggested we would be eligible, so I put my name down on a waiting list. Karen did various courses to enable her to progress in the field. Her horizons had expanded greatly since we had met her. There was so much more to talk about.
Ian had been getting help from Gary, one of the volunteers at the museum who was looking for work. We paid him to do some of the heavier work.
In September Ian had a fall and broke his wrist and we needed more help from Gary in the grounds. We were going to Wiseman's Ferry with APS and of course there was a lot of extra work for me packing, cutting all his food, helping him dress and undress, but we both had a great time and there was plenty to see and do and our friends helped.
Over the years I had learnt what I could about Multiple Myeloma and joined the MM Society. I wanted to know more about the nursing side as Ian wanted to stay at home as long as possible. The haematologist knew nothing about local facilities except pathology and Xrays and nothing about management in the home/ street/ car. During the year Ian had four blood transfusions and two courses of chemotherapy.
On Christmas Day a bushfire came through Tomerong. We knew it would happen one day and had given it some thought. As the fire approached, Ian was having a sleep. I got our lunch ready, closed the windows and packed a few valuables and albums "in case". We were sitting down to our Christmas lunch when we were told to evacuate which we did. The policeman went in to Ian's bedroom where he was collecting medication and packing his nebuliser and hustled him out. We came back after dark from visiting friends to a black garden and a prolonged blackout. Lunch was still on the table! No homes in our street were lost although all the neighbours lost sheds. We were virtually untouched except for the garden which looked very sad. For days tree trunks all around glowed. The whipbirds, usually heard and not see, were suddenly visible in large numbers, followed by other birds for whom we left out water. Blue-tongues and other animals were also there.
The decimated garden A lot of food from the freezer and fridge had to be thrown out. For the next few days we shared what we had with our neighbours, cooking on the BBQ and gas stove. Friends and neighbours helped in the short term until power and the phone were restored and in the longer term cutting down dead trees and clearing up debris.
The panel-beater where Glen had been working lost everything. Glen who had been wanting to go home to Bega, had already made the break and got another job. We missed his help and watching his slow development of confidence. One of the volunteers at the museum was looking for work, so we had employed him to help us from time to time, chopping firewood, checking for termites under the house and keeping the gutters clear of leaves when Glen was not available. Now we needed him more often.
Most of our trees had survived the fire. Some plants started to regrow. Jordan planted some peas in the vege garden under Ian's directions.
2002
Ian began a few things in his workshop such as a shoe cupboard for Jacqueline and a "cist" for Jordan. We got a handicapped sticker for the car and a girl to vacuum the floors fortnightly. Ian wore slippers everywhere as his boots hurt. I found a box to keep his swollen feet elevated when he was in his armchair.
Norna came by one evening, arriving just as I was about to serve the dinner, wearing a swimming costume as she had spent the day at the beach with friends. She talked about herself, did not ask how Ian was or how we were coping. There was no attempt to resolve any problems. There was little to talk about. We had grown even further apart. There was no point of common interest.
For a few weeks we did not go anywhere much but were dependent on visitors for social contact. The neighbours and nearby friends were marvellous and we had visits from Jacqueline and Jordan, also Glen and Kylie.
We continued with our usual involvement with Australian Plant Society, German lessons and the local museum, but were more restricted and avoided longer walks and heavier work but soon gave away the German as it was too difficult for Ian to get there. We rarely went out at night but watched TV (mostly ABC), wildlife programs and Landline and read for relaxation and entertainment. Movies were usually too long and cryptic crosswords too taxing.
If I went anywhere without him, I had to make arrangements for Ian's needs. This was no hardship as we shared almost all our friends and they were only too willing to help if possible.
I did very little except with Ian. He never drove now and was dependent on me or others. He used his workshop to keep tinkering and started two more plinths for the museum, but I thought when he didn't need the workshop I would sell up. Ian asked me to put a dressing on his elbow as he had slipped getting up from the toilet and took some skin off on the basin. At the hospital for Aredia I asked for the Occupational Therapist who brought the Physiotherapist. They wrote down suggested exercises to strengthen his muscles. We hired equipment for walking, the toilet, bathroom, bed and a bottle to save him getting up in the night. It was a pretty tight fit to get it all in car. We should have had this sooner if I'd known it was available and Ian had seen the need.
The OT came to look at how the equipment worked in the house and made some good suggestions. Ian didn't want to admit he had problems with the shower but I didn't want to wait until he had another and perhaps more serious fall. If he fell in the toilet he could fall against the door and no-one could get in to help. He agreed to leave the toilet door open. Ian reluctantly tried out the Rollator which could only be hired for two weeks. He had to admit it helped so we bought one ($195). The bathroom chair was not thrilling but satisfactory.
Ian had often said he was not afraid to die, he talked about a limited life, ("I won't be around to see that"), but when it came to the point he did what was suggested to keep as healthy as possible. I always tried to provide good healthy and tasty food, to have drinks he fancied mainly, Ensure as he was always willing to drink that. He did the exercises diligently several times a day although there was no obvious improvement. For limited periods he worked on the next plinth for the museum and on a cist (box) for Jordan.
Ian's cancer progressed to the point where the haematologist said there was nothing more he could do as the chemotherapy was not bringing the myeloma down and the blood transfusions were not improving his red and white cells counts.
It was now six years since Ian's myeloma became active, 14 years since it was first suspected. I got a Carer's Allowance and we were on the Safety Net. As the weather got colder I lit the fire earlier and earlier provided there was enough wood. Otherwise I put on the gas heater. Before bed-time I put a small electric heater on in his bedroom to take the chill off the air.
Ian was having more frequent blood tests and visits to the haematologist.
While I was shopping on other visits to town, I usually took him to the library, driving right around the block to get to the library ramp, which was not easily accessible, let him out in the entrance to the next building and then went to park the car. To go for a drink I picked him up from the same place and drove the hundred metres to the cafe, then parked again. In June we went to the APS meeting in the evening. A friend did the plant table instead of Ian. Members applauded Ian's long involvement. The next day he said he would not have another long day in town, it was too much so that was our last meeting. He now had meals in his easy chair and reduced all activity.
One night he got up coughing up phlegm into the toilet so I rang the Community Health the next day and asked for someone to come to advise me on nursing techniques, knowing if his blood pressure was too low. All the MM literature was about the treatment, not what happened when it was not working. The nurse brought an adjustable stool to keep his feet up. Ian told her he would like to go to sleep and die. She was very helpful, talked about all our worries, possible palliative care. She will organise for someone to come regularly so that I can go shopping and will contact the Palliative Care Hospital, as I rarely leave the house without someone here. I would need some respite. She will set the wheels in motion. Ian could then stay at home except when he had to go to the doctor. Until then he always wanted to come to town, even if he waited in the car. He asked Paddy to finish the final coats on Jordan's cist having "retired" from the workshop and also the vege garden. He had strongly resisted the idea of giving in. He also sent the pieces for the plinths to the museum to be assembled.
I brought his nebuliser into the lounge room so that he did not have to struggle to the bedroom and on to the bed. He had a little soup for lunch, then went to bed. He needed help to get up from his armchair after lunch. Later he had a quarter of an apple. He tried using my computer chair so that he could swivel round at the table, as it was difficult standing up from an ordinary chair. He was having more frequently blood transfusions.
One night Ian was on his way to bed when he had a fall in the bedroom, landing on the floor. No way I could lift him and thought of ringing Paddy to help me. But I managed to get him onto a low, then onto a bigger box, then onto the bed. His back was a bit sore, so was mine. I should have got Paddy or the ambulance.
Ian had another fall, this time in the lounge room and I got Paddy to help me. Later Ian lost his balance again but fell onto the arms of the chairs and not right to the floor. The frequent falls were worrying me. He wanted to stay at home and was never unreasonable or demanding, but I felt I could not give him the best care. The nurses brought a commode chair on wheels, left Microlax which Ian used, moved the furniture around, put a "monkey bar" over his bed, put the extra mattress on the bed, changed the chairs in the lounge and made further suggestions. Until now Ian had dressed and shaved every day but he started leaving his pyjama pants on after his day sleep to save getting changed again later. Phyl came to stay with Ian, I went to Bank, library for books for Ian, shopping, chemist.
Ian had a shower, I helped him dress and undress and get into bed, lifting his legs etc etc. He could not wear boots at all, only slippers and could not put them on unaided. He also had mouth ulcers.
Arrangements were made for him to go to the palliative care hospital. Paddy helped me get him into the car, which I had backed out a bit to allow the door to open wider. On registration Ian chose not to allow Sean or Norna to visit him as he found it too upsetting. Also he made it clear he did not want resuscitation in case of collapse. He had occasionally been in hospital overnight for his transfusions and infusions and usually rang me in the evening. I had a day at the museum, a good "normal" day! Ian rang that evening and told what he had eaten, he had met the visiting doctor who prescribed eight Panamax a day instead of one or two and he was already much more mobile and able to dress himself. I had a better night's sleep. The Palliative Care doctor talked to us at length, suggested that it was appropriate not to have any more treatment, not even Aredia if Ian didn't want to, but just to treat the symptoms and keep him comfortable. Ian said he will go for the next Aredia as usual. They gave him a card with routines and medication marked which helped.
They arranged for an oxygen concentrator to be delivered and a special hospital bed! When I collected Ian, three neighbours had just finished setting up the bed, putting the old one in the garage. The bed could be raised and lowered and the head inclined as required.
I reorganised the routine with a lot more painkillers, more nebuliser, try out oxygen, regular laxatives, not forgetting eye drops and antibiotics. Ian spilled his bottle in the bed so I had to do a load of washing. In future he will empty the bottle into a bucket each time. Once he decided to move the bed, without first moving the bucket! He didn't like the changing pressure in the air mattress and switched it off.
Jacqueline and Jordan arrived for a visit and collected the cist Ian had made for Jordan. She was very pleased. We always had friends to pop in, often bringing a cake or home-made biscuits as I was not baking.
Peter wrote a long letter telling Ian he had a strong admiration for him as a "noble, friendly, honest, trustworthy, diligent, loyal man". In due course Ian answered with equal frankness and corrected some assumptions about some aspects of Ian's early life and offered fatherly advice about Peter learning to "go with the flow" until his boys were bigger.
When I got home from a quick trip to the museum one day Ian said Sean had rung and told him he and his latest girlfriend were not seeing each other as she was "too busy". Ian asked if Sean had been straight with her and Sean got very angry, hung up but soon rang back and "lost his cool". When I was getting dinner and Ian was on the nebuliser, Sean rang again and I told him he had upset Ian who was not well the last few days and getting worse, so he blasted me, said he and Ian had a good relationship until I came on the scene! He thought that was later than 1977! He maintained that he had always done his share of the work around the house. Unless he stopped blaming me and started to look deeper there will be no change in his relationship with Ian. He brought up the fact that Karen, kids and John had called in when we had said Sean should not come at the same time as Norna (I had previously, more than once explained this and anyway it's OUR business who we see), then that I had agreed not to tell Ian everything Norna said at Mediation (also previously explained as I do not keep things from Ian and how could I explain a whole day of discussion? And of course I did not tell him EVERYTHING, some was just too silly).
I said "This is the first time Ian has confronted you with something that has long bothered him." Sean did not accept that he had ever been untruthful or less than candid and said I had no evidence. I hung up after a while, he rang back, it was a pointless conversation, I hung up again and left the phone off the hook. Ian said he will not answer the phone again. When I told Ian that Sean said he had done his share of mowing the lawn, Ian laughed and said "You could count the number of times on half a hand."
In the evening Sean rang back, quite calm by now, I said Ian will ring him if he feels like talking to him. Sean was saying he had never heard from Ian any of the things I had asserted. I held the phone to Ian and said "Ian are you well?" and he said "Sean I am ill". Sean went on about my statements so I asked Ian "Have I ever told Sean anything you don't agree with?" and he said he totally agreed with me and that Sean should stop pestering him and something about "until I die" and hung up. This was an episode neither Ian nor I needed. It amazed me that Sean couldn't see that for himself and put such pressure on a chronically ill man. He knew nothing about Ian, his background, his preferences, his interests. He had probably been able to convince himself that he was an honest person. I promised I would not leave Ian alone for a minute. Stress was something to be avoided.
The next time we went to the museum I did some work before lunch, while Ian was sitting in the foyer. When the VIPs arrived he was introduced to the Minister and photographed as a valued volunteer.
He gave a lot of his tools to the museum and other people who he knew would value them. His workbench went next door to Paddy with help from other neighbours to get it there.
I found a large board for Ian to do a jigsaw, one of his current diversions. Ian did not like the air mattress for the bed and has switched it off. When the Palliative Care nurse came to talk about a volunteer to stay with Ian he was adamant he wanted the top mattress off. His was still his own master. There is no cure for swollen ankles except to keep the feet up if possible.
Ian wanted to go for a drive. His greatest regret about his illness was that he would not see the conclusion of many projects and whether or not they turn out to be positive. We left after lunch, the road was quite good at first, then very potholed. It was at least a different scene.
Ian's feet and lower legs were more swollen, so I got him a pair of sloppy socks as the ones he had been wearing pressed in. I tried to stretch them more on jars. Apparently the swelling in his feet was caused by Prednisilone, part of his chemotherapy and was unavoidable.
The volunteer who came to "Ian-sit" said she could give Ian's feet a massage as she had been a trained nurse. On Saturday Jacqueline got some shopping on her way down for lunch, bringing a spare bed lamp as the new bed did not have one. Usually Ian got up about 7, put on the gas heater, did the nebuliser, I got up at 7.30, got his breakfast, then mine. Ian went to the bathroom, then went on the oxygen machine while doing some jigsaw until about 10 when we had a drink. Before lunch he did the next nebuliser, after lunch mostly had a sleep, then more oxygen and more jigsaw, another drink and read, more nebuliser, dinner, TV. I was putting Ian's medications in a container each time as he was not sure what he had to take and what he had already taken.
One morning Ian was in the bathroom when the haematologist rang from home to say Pathology had contacted him with some results, the red cells were down to 5.9!! I was a bit shocked as Ian seemed slightly better. He had been pretty stable, content not to try to do too much, glad to have people drop in to talk. This was a relief as it meant he was less likely to fall or spill things. Another transfusion was suggested. I arranged it and took him for the cross match. Next day I took him to the hospital and collected him in the evening. During the year he had five blood transfusions, monthly Aredia infusions and two courses of chemotherapy but the treatment had lost its effectiveness.
