Hi Chris and sorry to hear about your friend. I do hope I can meet up with you and also Lynda before I go back to Christchurch.
And Lyn, it's long-time blogger friends like you that keep me coming back. I've been thinking that it would be a good thing to get back into my old routine of writing first thing in the day. Actually, I used to walk first and I'm so unfit and lazy as a result.
I do a lot of hand sewing. Still doing patchwork and quilting by hand. We bought a sewing machine just before Christmas because I'd given my old one to Jane years ago and now that we live so far apart I can't borrow it. I still haven't used my new one and there's a lot to learn but I must. I have so many projects lined up that I've no hope of completing most of them if I don't set aside my fear of using a machine again. Hand sewing is so relaxing and usually easy to carry around from place to place. I cannot count all the unfinished pieces I have. There's always something important I want to finish that takes priority. Currently I'm working on Ava-Jane's 'forever' quilt I should only need a couple of weeks to finish but I keep getting distracted. I've begun a few small pieces of crazy patchwork, which is odd shapes with as much embellishment as I can think of. My current piece is a shoulder bag for a very dear friend.
I went to a Crazy Patchwork Workshop at Grandmother's Garden in Gordonton, near Hamilton the weekend John's health collapsed. It was good to be there among both experienced sewers and learners and I learned one important thing. There's NO RIGHT OR WRONG WAY. What a confidence booster that was But by the Sunday I was feeling very anxious because it was obvious that John wasn't well and we were too far away from his doctor in Christchurch. The next morning, Monday, April 9th, he asked me to call an ambulance.
All our family are very thankful that John did not have a prolonged illness. We are still puzzled that the liver cancer wasn't detected during the followups after the heart attack he had last November but somehow his symptoms became confused with the possibility of drug incompatibility. This meant we had no lengthy period of anxiety regarding a diagnosis of cancer. And none of the terrible decisions around the worthiness of treatment and side effects. We enjoyed life right up to the last 2 weeks and had settled into our final home accepting that if there was ever another move for either of us it would only be into some kind of hospital care, if that became necessary.
In the next paragraphs I'm going through our experience. This is also my only journal so is for me more than anyone.
In some ways it would have been less stressful to have been in Christchurch when John became ill but...... Our family and friends are mostly in the Waikato. My sister-in-law, Jenny, is Senior Trauma Nurse at Waikato Hospital and popped in to see how we were each time she visited the Emergency Department and she helped to see that we got the best care possible. She stayed with me until a doctor came and told us John's blood tests showed 'Deranged Liver Results' and they would admit him for a CT scan the following day. Although we didn't talk about it then I was aware it meant he had serious liver disease, probably cancer. My brother picked me up from the hospital that evening and took me to the B and B. The next morning I packed all our stuff into our car and my sister took me back to the hospital and stayed with me for a few hours. Our daughter, Jane, completed some essential work related to updating her nursing registration and was with us from early afternoon of that day, (Tuesday 10th).
She was the one who made sure we saw the right people and arranged to see the palliative care team the following morning. We were able to stay with my brother and his wife that night. It was quite late when my brother and Jane went to the place John and I had been staying to pick up our car. It was comforting to be with family and know that we all understood what was going on with John. By this time we all knew he might only live a week or two and maybe less. When we got up the next morning, Wednesday, Jane told me she hoped I was in agreement with her plan to take John back to her home and to be out of the hospital by 3 pm that afternoon. I was so relieved to have her help and support as I knew it was exactly what we should do.
Jane put aside her personal feelings and put her District Nurse's cap on. She arranged for John's medical records to be transferred from his Christchurch doctor to his old Whitianga doctor. The Nursing Care, a Personal Carer for showering him, a hospital bed and other paraphernalia associated with hospice nursing in one's own home were all organised in the next few hours. The palliative team consulted with us and prescribed the correct medication. A pump with anti-nausea and pain relief drugs was established under Jane's experienced eye. Jane even wrote out John's hospital discharge and referral to the Whitianga Community Health Centre because the nurses on John's ward were somewhat confused by the whole thing. Did I say the hospital was confusing? I knew what we should be doing but I'd never have got through the process on my own. We left the hospital at 2.30 pm.
and thanks to the medication John travelled reasonably well throughout the nearly 3 hour trip
A note about Waikato Hospital. The staff were lovely and worked hard, always doing their best. The system for someone in John's condition was exceedingly poor. The triage in ED was quick and he quickly had blood tests taken and was placed in a cubicle. After that there was almost no nursing care and we waited and waited. I'm not sure at what point it was known John would be admitted to a ward, but it must have been early afternoon. We waited because only a doctor from the General Surgical Team could arrange the admission. No-one with this authority was available until nearly 8 pm. In the meantime John was severely dehydrated and had some pain but was left untreated while 'more critical patients' were attended to. Even my lovely sister-in-law couldn't make much of a dent in this process. When John was finally taken to a ward the only bed they could find in the hospital was in orthopaedics with young men and broken bones. Again the nursing staff were lovely but none had experience in the kind of care John needed. They did their best to keep him comfortable but it was not ideal. Nor was it good that we were discussing John's limited future and care without any privacy. It must have been unpleasant for the young men in the nearby beds.
The last straw was the lack of consideration by the Consultant who we were told was 'The Top Liver Man'. He took his team of registrars and trainees to see John when I was out, (on the next floor down), having a lunchtime cup of coffee with my sister. This was the only time I left his bedside until late that night. When I got back to the ward there was some kind of buzz going on. The nursing staff were fuming. The consultant had walked in and told John he had Liver Cancer and there would be no further treatment. At the time this went over my head but in retrospect it was awful and totally against hospital protocol. I don't think John, who was already in a weakened state, ever recovered from the shock. We are told the Consultant will get a rap over the knuckles.
Once again all the support in the world could not speed up hospital processes and it was 8 pm before Jane and I got the family consultation we had been asking for. The doctors who talked with us were very good but there was no provision for a private space so Jane had arranged for us to use the Ward Managers office. At this meeting we asked for the palliative team to be involved and they helped us organise John's subsequent discharge to Whitianga nursing care.
Back in Jane's home John revived somewhat for a few days as the proper nursing care improved his comfort level, but the reality was we could see him losing strength almost by the hour. It was hard not to panic as I contacted our sons and they made arrangements for to come to Whitianga. Somehow we did all that was important and had a chance to say goodbye and begin our grieving process in a way that never happens with sudden death. Death is unpredictable and we were glad for both John and ourselves that this period was so short because John died on Friday Morning, April 20th.
Jane has only been in her house since last December and tradesmen are still popping in to give finishing touches. Today the painter is here. Jane designed her home with her aging parents in mind and also one of her brothers is a paraplegic. Her foresight was really appreciated as it made caring for John so much easier than a house with standard fittings.
We decided to have a memorial service the following Tuesday, April 24th, rather than sit in church looking at a casket. In fact it all went well and the days flew by as we went through contacting the people we thought we should and making arrangements. The most difficult was the photo slide show. This was partly due to our ineptitude with technology until the teenagers came to help and the fact that any photos prior to early 2000s were in Christchurch. I chose 30 minutes of music to precede the service including Singing in the Rain by Gene Kelly, I Believe In Angels by Abba, followed by songs by Legacy Five and Ruth Faizel. We played the sideshow to Rock Around The Clock, Route 66 and What A Wonderful World by Louis Armstrong. Now we have John's ashes which I will have interred in Matamata Cemetery where some of my family and John's Dad is remembered.
It was a quiet, non-pretentious service that satisfied me and I hope brought some comfort to all our family and friends.
I wrote a poem which I was able to read and also the eulogy which was read unedited by my pastor friend from when we lived here. That brought a few chuckles because it was really unfinished and I lost the plot while writing due to distractions and getting too tired to write.
Here's a copy of what I spoke and I was very proud of myself for being able to share it without breaking down.
One of the great privileges of life is being given time to spend the last days and nights with someone you love.
In the early morning hours of John's last day on earth I was given a sense that he would be spending eternity in Glory with our Heavenly Father. We were alone. John was sedated and sleeping peacefully. I was meditating on our life together and how amazing God's ways are even when we are unaware of his hand helping us through.
We had been married 11 years when I made a serious commitment to God, becoming Born Again through Jesus.
John never hindered my desire to be involved in church life but he never joined me apart from a few rare exceptions. I prayed and I believed God had a plan for John's life and I waited for the day we would be totally united in Christ. Eventually I accepted that God wanted me to accept life as it is and cease fretting.
We had a great marriage. It was thoroughly imperfect yet full of life. We experienced just about everything life could throw at anyone and sometimes it seemed more than we could bear. There were times of deep sadness and times when life was full of fun and joy. I call it an abundant life.
When I knew John's time on earth was coming to the end, I wondered about where he stood with God. For 44 years I'd been waiting for some kind of confirmation that God had heard my prayers.
Finally, my answer came in the stillness of the pre-dawn night. I composed this verse to mark the moment.
I believe in angels
Tonight they wait with us,
Tonight they wait with us,
Here to watch and keep us safe.
In my heart I heard God speak.
"I have a place prepared.
There are many rooms within my house
And John's is ready.
'My angels wait until I call,
They'll carry him to me
And John will be home safe at last.
'I give you my peace
There's nothing to fear.
John will dance on the streets of gold
In the Holy City of God.
I played this song after reading the poem. Angels All Around by Cobhams Asuquo.