Tuesday, July 27, 2010

There is a ? in my Future

Debby made the comment, in response to a previous Post, that I simply acknowledged that depression was a real possibility for me and I stepped up to do something about it. Yes! I did take steps by grabbing some domestic assistance however, that is not the heart of the problem.

Haydn has suggested that I put my current dilemma out there in blog land to get feedback. The thing that is bothersome for me is the isolation at the farm. At the time of our retirement in June 2008, the move to life on the farm sounded idyllic. We could not have possibly known what was in store.

Let me summarise briefly the 14 years that Haydn and I have been together. It is not my intention to get into the whys and wherefores. Married around two years when the going got too tough and we separated. Remained great friends and continued to enjoy a life 'together' while living in separate homes. When I was diagnosed with breast cancer, way back in 2003, Haydn decided to build on acreage in the Hunter Valley. The property had been owned for many years by he and his late wife. A 67 hectare property would provide the opportunity for us to build a new home in which I could do 'my' thing.  It would provide a lifestyle that would keep 'him' occupied in retirement.

Haydn is basically a farmer at heart and this place gives him the opportunity to do what he loves most. So, apart from the days that he is driving me to appointments, he goes outside and 'plays' with his toys. This leaves me in the wilderness with far too much time to think. Although I attend Tai Chi and yoga classes, I have not formed any lasting friendships. I have always enjoyed being around people. I miss my friends, particularly at this stage of my journey. I want to be surrounded by the charge of energy that comes from loving, giving people. Sometimes, I want nothing more than to be able to sit alone in a coffee shop and watch the world go by.

Haydn believes that if the farm is sold for the expected price, he would have sufficient funds to purchase land elsewhere - minus a house - as well as something in which I could live. This would leave me in town where I have contact with friends and Haydn could come and go as he pleases. This seems less than perfect as I really find that I am no longer capable of doing for myself while Haydn is not really interested in food preparation. He only eats to live.

It therefore seems unfair to me for Haydn to give up his life on the farm. This is what he always wanted. What sort of relationship is it that sees him living in a 40ft x 20ft transportable during the week and me struggling to prepare meals for myself. In a perfect world he and I would go our separate ways. This would enable him to meet someone and move forward from here.

Maybe I feel I have become a burden and I do not want that for Haydn. Funnily enough, when I mentioned the opportunity of him finding a life with someone else, he asked 'why?'  Maybe it was the thought that he could end up with more of the same. Simply not worth taking a chance. I suppose he would feel like that after his experience; two wives with ill health. He is, no doubt, asking himself 'Why me?'

Maybe the bottom line for me has more to do with my life expectancy. I have no idea what the future holds. The Femara is keeping the Breast Ca in check at the moment, but who knows for how long. While Haydn is living 'his dream' I seem to be standing idle and watching my life pass me by. I feel helpless. I do not have a 'Bucket List' and I do not really know what it is that I need to do. I believe there must be a purpose for my being and yet the passion is missing and I have no idea how to go about resurrecting it.

So fellow bloggers... if you read this entry please take the time to comment, or ask questions. I need, and value, your feedback.

Wednesday, July 21, 2010

He is Special!

I had an appointment to see Dr Milton Sales yesterday.

Some months ago there was a hiccup in the bookings at the doctor's surgery. I was inadvertently booked with a doctor that I had been seeing for over ten years. I had asked to see another doctor because my original doctor had told me, on more than one occasion, that this cancer was going to kill me sooner rather than later. I felt therefore, that he was not at all interested in treating me for other issues. On one occasion he suggested the 'other' problem was the least of my worries.

There must have been a level of distress that showed. Maybe it was because I whimpered 'I cannot see Dr ?' The receptionist immediately sensed a problem and suggested she would solve it. When she approached me some 5 minutes later she asked 'Would you mind if I put you in with Dr Milton Sales' My reaction? I quickly replied that I felt like a star on a Christmas tree. I knew that Dr Sales' books had been closed for many years. He has a wonderful reputation in the Lake Macquarie region.

Dr Sales appeared to be genuinely interested in my case. This is not uncommon due to the nature of the recurrence; it is quite complex. Cancer in the brachial plexus appears to be quite rare. There has to be some PLUS in all of this. I was very happy with the consult. I was even happier when I went to pay the bill and was told that I had been Bulk Billed. Normally, I would pay $68 and then claim my Medicare rebate of just over $30. This represents a huge saving for me as an oncology patient.

While on the subject of savings, I am immensely grateful to the imaging facilities that also have a policy of Bulk Billing oncology patients. This represents a HUGE saving. Last year I had a CAT Scan along with a Bone Scan. The cost was over $900 and I received just over $400 from Medicare. Once again, a huge out of pocket expense.

So. As a way of saying 'Thank you for making a difference' I called into the florist and had them make up a bunch of iris with golden yellow gerberas in appreciation. I really wanted this very special doctor to feel my gratitude.

Sunday, July 18, 2010

Yesterday's News

Yesterday we attended a 40th birthday celebration. The winter weather was a warm 16 degrees, making it a perfect day for Al Fresco dining.

The celebration was for one of Haydn's nephews. According to the boys, Uncle Hayd was a big influence on them, especially after the death of their Dad. Apparently Uncle Hayd taught them to barrack loudly for the Parramatta Eels Rugby League team, while relentlessly bagging the opposition. A vote of thanks was given by the 'Birthday Boy' who claimed that without that influence they would have been complete 'nerds'. Interesting in light of the fact that Uncle Haydn has never played any sport, let alone league.

The comment was made that the family do not normally 'do' celebrations well. I doubt that to be true and I do not believe it has anything to do with the fact that they lived on a farm, in relative isolation. A rough estimate of numbers would be approximately 25 adults with around the same number of children. Everything ran very smoothly, leading me to reflect on the day's events as we drove home.

The story goes that the boys were practically dragged to church each week and looked for any excuse that gave them the opportunity to renege. I married Haydn in 1996 and it has only been in the past couple of years that two of the four boys moved to this area. One of them a minister at a church in East Maitland, another recommended for the position of minister at a church in Muswellbrook and soon to take up the post. Interestingly, each of the boys attended Bible College where they met and married truly delightful young women. This appears to have set them up for life.

Having seen the families together, during both work and play, it is obvious that they have a profound sense of committment and unity. I believe this comes from their deep and abiding faith; a common bond and a shared interest. I admire and respect each of these families as their belief in the Lord God our Saviour is tangible and definitely something to be emulated.

A valuable lesson learned and, on reflection, the incentive I need to make changes in my own life.

Friday, July 16, 2010

How Things Change!

After completing radiation I found myself unbearably fatigued. As the months passed, I was also dealing with my inability to manage the household chores. My arm/hand gradually deteriorated to the point that felt I was at risk of becoming depressed if I did not seek help.

Living outside of a small village, I was amazed to find that I was able to obtain help locally. I spoke to Alison and she agreed to do it simply as a favour for the friend who had recommended her. Although I felt the sting financially, I decided it would go a long way towards keeping me sane. My friend Sue has Alison, and another team member, clean the lodges. Some will remember the view from Eagle Reach. Alison has built a very successful business with cleaning before and after departures and she has been coming weekly since the end of 2009, although she does not normally do private residences.

I was surprised to find when they arrived this past week that the helper did not speak on arrival. Normally I am attending my yoga class when they are here or, if I am in the house, I retreat to the study. Out of sight, out of mind. This past week I could not help but notice the noise as she rattled around the house. Given that the helper has always been friendly, I could not believe that she departed, with Alison, without a single word even though Alison bid me farewell cheerfully.

Concerned that I had done something to offend, I made a phone call to Alison. I learned during that conversation that this behaviour, although not a daily, or even weekly occurrence, does place more pressure on Alison when it happens. She simply does not feel confident to leave her assistant un-supervised. I explained that it was no problem for me, however, I could see that it may make it difficult for Alison to take time off work; for whatever reason. We decided that the behaviour was almost 'manic' and Alison said that she felt it could be a case of manic depression. Things are fine with medication, and yet it becomes apparent that the medication is either not taken, or changed, from time to time.

The following day, on our way home from the Oncology Support Group meeting at the cancer hospital, we called into Greenhills shopping centre. Shopping at the centre gives us the opportunity to catch up with Haydn's daughter Claire who works at the local Sanity music store. Imagine my surprise to find Alison's domestic assistant, seeing me, went out of her way to make contact. With a beautiful smile, and giving me a huge hug, she even managed to give me a peck on the cheek.

I suspect that our previous encounter had been completely forgotten.

The other great thing that has come from having Alison here to help is the recommendation to a friend of hers willing to help with ironing. Upon picking up my first basket of ironing from Kelly, I shed tears of joy when she said there would be no charge. The beautiful soul said that it is the least she can do to help at this time. This means the absolute world to me as I left my close friends behind when we made the move to the farm. I miss them dreadfully.

Friday, July 9, 2010

Live a Life that Matters

No Matter What Happens....

I remember a time when each day was long, when the world was a playground and my life a song,

And I fluttered through years with barely a care, ignoring the future and what waited there.

School was intriguing and filled with delights. I played away daytimes and dreamed away nights.

My parents assured me I had nothing to fear, and that no matter what happened, they'd always be there.

Little I knew of a world outside home, where tragedy, sorrow and murder could roam.

All I saw were blue skies, rainbows and stars. I looked past destruction of buildings and cars.

As a child, my biggest concern was just me; I had to be happy, I had to be free.

And if I was content, I would not shed a tear.

And no matter what happened, I still would be here.

But as I grow up, darkness starts to set in; my bright world has turned into concrete and tin.

I now see the violence I looked past before; friends start to die and my heart hits the floor.

Deadly diseases claim people I love, there are landfills below me, pollution above.

I often think back to when life was a game, but no matter what happens, it can't be the same.

There are days when I just want to break down and howl, to give up completely, to throw in the towel.

But I hold my head high and I push my way through.

I have too much to give and so much to do.

And I make a vow that, though it'll be hard,I'll go on with a smile and play every card.

I'll give all I can, help others and love.

No matter what happens, life will bloom again, and the strength I don't have will come from above.

So come, take my hand, and through darkness we will sail if we all join together, we never can fail.

We'll remember to care, remember to feel, and no matter what happens, our world we will heal

Author Unknown

Thursday, July 1, 2010

When Enough is Enough

I believe that at the time I agreed to marry Haydn I undertook a role, although I probably did not recognise it at the time.

Haydn and his late wife Leigh were married for about 27 years; they have 3 children, all of them living in this region. Leigh was an only child and her death left a gaping hole for her Mother Dorothy [Dot] who is now 92 years of age. Daughter Alex is the only family member to take time for her grandmother.

Dot has enjoyed the most amazing health and is not coping well with the periodic burning sensation that she gets in her legs. Fortunately it is not always there. Either Haydn or I call daily to check that she is OK. We offer to help where we can although there are often time constraints as we struggle to fit in my medical appointments; we all know there have been plenty of those over the past two years. We regularly buy her beer and fruit and vegetables and take them to her. Yes! She enjoys a glass of white wine with lunch and a beer at night. I have mentioned previously that retiring to the farm was not a good idea; this is the time we need to be close to all services. The 180 kilometre round trip adds about 2.5 hours. They are often long days.

We have noticed lately that Dot has become very despondent and cries frequently during our phone conversations. Her eyesight is failing, making reading difficult. Apart from that, she is quite agile and lives alone. She would like to continue to live where she is as it is across the road from the shopping centre. The most pressing problem appears to be that she has outlived her friends and loneliness has become enemy number one.

She mentioned recently that she had gone to to Garden City shopping centre looking for the Target store. She asked directions and became so overwhelmed when she could not follow them that she found her way to the bus stop and headed for home with great urgency. When I suggested that Haydn and I would be happy to take her she thought it was a lovely idea as there was some shopping she would do there.

Today was the day! Funny thing is that when we arrived at the shopping centre she had no interest in looking in the shops. What do you do with a 92y.o. from 10.30am to 12.30 while waiting for granddaughter and great granddaughter to arrive? I suggested coffee and, although she was not interested initially, she succumbed, and so we sat down waiting for Alex and Amarlie to arrive for lunch.

Dot shared with me the fact that she is tired of living; the loneliness has left its mark and it is obvious that she now sees the glass as half empty. She is fast losing sight of the joy of living. The passion has gone.

I asked her what her feelings were on euthanasia. She says she agrees whole heartedly but does not feel she has the where-with-all so it is not an option.

I have just begun reading 'Denial of the Soul' [Spiritual and Medical Perspectives on Euthanasia and Mortality] by M Scott Peck. Being a believer in Eternal Life I am determined to learn my life's lessons knowing that it is not when or how I die, rather how I live that is important. I am prepared to put my trust in the medical system [and the Lord] to provide quality pain management and palliative care as necessary.

In the meantime I have just gone to make myself a cup of ginger tea. The honey jar was empty so I had to open a new one myself as Haydn is in bed. Just for the fun of it.... try putting your dominant hand behind your back and opening a new jar. Makes me smile as I endeavour not to let the frustrations overcome me. Who says I do not need to be in care?