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

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?

Chalk and Cheese

Haydn and I had put plans in place to do an exercise. Given that I am currently not driving and, at times, wonder if things will ever change, we decided to look at real estate elsewhere.

Haydn called the local real estate agent for an appraisal. Armed with the knowledge that the farm was worth $???? he had thought that maybe the farm could be sold if, in fact, he could purchase another property closer to a township offering us more services than we have here. The problem with living where we live is the isolation for me closely combined with lack of services.

6 kilometres to our north we have the village of Gresford which has a general store, post office and pub. We are blessed to have a coffee shop at the moment but, not sure how long it will last as it has opened and closed 3 times in the 2 years we have lived here. 6 kilometres to the south we have the village of Vacy with nothing more than a general store and pub.

Maybe we could stumble on a great property closer to services. We are 30 minutes from the regional centre of Maitland and just over 1 hour from medical services, including the Calvery Mater hospital at which I have my cancer treatments.

We set off yesterday to meet with real estate agent number 1 in the township of Clarencetown. He suggested we drive to the property and he quickly jumped into the back seat thereby saving his own fuel. We turned off the sealed road and, as we made our way along a winding dirt road with lots of water filled pot holes, Haydn asked if this was the property. He was rudely told 'No. Keep going!' Shortly Haydn asked again if we were on the land that was for sale as he could tell that it was not good farming country. I was then told that my husband was a hard marker...too severe. How could I then admit that I had absolutely no interest in going further as we were even more isolated than we are now. This rude man was persistent and so we kept going. When we were discussing the benefits of living in our north facing home we were told we should not be making comparisons. I ask 'How then do we make the decision about value for money?' Silly me! Cannot remember exactly what was said but I remember how I felt. Could not wait to get this man out of our vehicle as I felt him grate like chalk on a blackboard.

We then met with real estate agent number 2 in the township of Dungog. Haydn explained the situation and the reason for our enquiry. After discussion about the place we had sought information on, he suggested that it would be perfect for me but not suitable for Haydn the farmer.

As we walked to the front door I was surprised to find this delightful man put one arm around me, while taking my other hand in his. He expressed his delight at meeting me while encouraging me to take special care of myself. I could feel the shift in energy levels as he walked with us to the footpath. He continued to encourage me with his carefully chosen words. Before long he was shedding a tear. As we hugged, I asked him to talk to me about what was happening. It turned out that his Mother had passed 3 years previously. He walked with us to the Pajero all the while discussing the situation and the rise in the incidence of cancer.

I felt deeply touched by the experience and could not help drawing a comparison between the two agents. Definitely chalk and cheese!

Later in the afternoon I received an email in which he suggested that he had no idea what had happened as that was not his usual style. He had realised however, that he did need to spend more time with his Dad giving them both the opportunity to heal while learning to live without their much loved Wife, Mother and Grandmother.

In the meantime we are no closer to solving the dilemma of whether or not a move would work for us...

Another Day

Another day...another doctor's visit.

The discussion appears always to be about side effects of medication; and therefore changes to same. I was disappointed to find that my INR reading was under 2 and, not quite at optimum level to prevent blood clotting. An increase in Coumadin to 6mg should give me an INR reading of between 2 and 3 within 3 to 4 days.

Once again, Dr Sales mentioned the obvious drawbacks of living at Vacy. I can say, with absolute certainty, that the decision to retire to the farm was not a good one, given my current health problems. What a good idea it seemed when I was healthy, and capable of driving myself wherever I wanted to go. An hour to Newcastle was nothing.

Somehow it seems I have made my bed, as my late Mother would say. Haydn is a farmer; this is HIS life. As I face my own mortality I miss my friends and the many opportunities to visit the local shopping centre for a cup of coffee. Or, to watch the world go by.

As I ponder my current situation it would seem I have a way to go to make any type of life changing decision. Dr Sales assures me I am a long way from going into care, which I had thought was probably my EASY option. Oh well! Back to the drawing board.

Of course there is also the option of believing in the countless possibilities of the mind. Telling myself that this arm is capable of doing everything that it is required to do. If I can do that, as well as getting my medications to the stage that I do not suffer from fatigue, then I could be back behind the wheel and participating in life once more.

Today was an example of just how things go pear shaped while in my current situation. Left home at 8.30am. Saw my doctor at 10am. Finished at 11am. Picked up prescriptions from pharmacy, grabbed some lunch for a 1pm appointment for Bowen Therapy which works a treat on my arm. Remember, Haydn is the driver and he gets to sit in our vehicle for the wait. Not much fun for him and, although he does not complain, I am reasonably sensitive these days. It seems to me, I have lost my freedom. I struggle with the knowledge that I have lost my independence.

As I sat enjoying the company of Ellen [receptionist], I found myself getting agitated when 1pm passed and1.30pm came around. Daphne was still with another patient. I knew that by the time she had finished with me it would be 3pm and, therefore we would be late getting home; Haydn becomes quite tired sitting around all day. I decided to leave without treatment. This would never happen if I was on my own. Why do I feel so guilty?

I know my intuition will tell me when it is time to make changes.

In the meantime I am reminded of the saying 'Things work out best for people who make the best of the way things work out'

As I Stand Now

Yesterday I had a consultation with Dr Richard Burstal from Hunter Integrated Pain Service. I found him to be compassionate and understanding. Having requested a referral through my General Practitioner, I was optimistic that I would be offered some pain relief other than my current list of medications.

It turned out to be a painful emotional experience. I awoke in the morning feeling unwell; not at all like me. When I arrived at the Mercy Hospice for the Outpatients Clinic I could not believe that my stomach was churning. Even my coffee from the brilliant barista did nothing to settle things down. I was able to recognise the reason for my dilemma. The last time I had been in that particular part of the hospital was 1993/94 when I accompanied my late husband Ray to meditation sessions held at the hospice. Bitter sweet memories.

Taking 80mg of Oxycontin [1 b.d.] is a concern as I have been led to believe that it is not terribly effective for nerve pain. There is also the fact that it is highly addictive. Dr Burstal reassured me that the Lyrica [Pregabalin] and Epilim [Valproate Sodium] were used for that purpose. In his opinion, the 80mg of Oxycontin night and morning was not a huge problem. Although my pain is reasonably well managed, I am well aware that there have been times in the past - and likely to be times in the future -that it will be different. It is important for me to feel that I am prepared for the future and I know exactly who to turn to should the need arise.

My current treatment is designed to give me quality of life and, unfortunately, the fear factor often rears its ugly head. Having had uncontrolled pain on numerous occasions, I do not wish to go there again.

Now that Dr Burstal has seen me while I am feeling well, I have been reassured that there are many options available, should the need arise. What a relief!

Today I attended the monthly meeting of the Oncology Support Group at the Calvery Mater Hospital. I felt it would be particularly interesting as I personally have always used some form of complimentary treatment.

Our topic for this month being Anti-oxidants and other Complementary Medicines. We were to have Jon Dickson as our guest presenter. Jon has 4yrs post graduate qualifications in herbal medicine along with his pharmacy qualifications. He has 35 yrs experience in community medicine and 14 yrs experience in Herbal Medicine.

Jon is keen to introduce complementary to orthodox medicines which have scientific evidence to back them up.

Unfortunately, he was unable to attend due to a sudden death. Seems it will be rescheduled. I look forward to that.

There was some discussion about the benefit of following the asparagus cancer treatment and it surprised me to learn that one member has been using it for about 6 months while another intends to commence shortly. I believe the jury is out on the success of the treatment and it is certainly not something I would commence midway through treatment without the approval of treating doctors.

I believe it is important to remain optimistic. I find myself reflecting on complimentary treatments which are often suggested. Undertake it only if I truly believe it will work for me.

And........ never, never, never give up HOPE

Dinner Tonight

With my heightened interest in blogging once again it is good to be here. In the past I gained a great deal of insight in responding to your comments. Unfortunately I have a tendency to be a little long winded which is just not possible as I struggle with my low-level typing skills. I value your input, and look forward to the day that I am, once again, able to respond. In the meantime, please be patient and accept my heartfelt thanks. Blogging would not be too much fun without readers.

As you can imagine, food preparation is rather difficult when I am unable to hold a knife. Therefore we are always on the lookout for simple, good tasting recipes.

On a recent visit to the Mater Hospital, Haydn grabbed a recipe that looked tasty and entailed very little food preparation. Here it is; tonight we put it to the test.

Chinese-Style Curried Prawns

1 onion, thickly sliced

2 cloves garlic, thinly sliced

2 tablespoons mild curry powder

400g packet, raw peeled prawns, defrosted

4 cups mixed frozen stir-fry style vegetables

1 tablespoon cornflour, blended with 1 and one quarter cups chicken stock

Heat 1 tablespoon peanut oil in a wok over high heat. Add onions, garlic and curry powder, cook for 2 minutes. Add prawns and cook for 1 minute. Add vegetables and stir fry for 5 minutes.

Stir in stock mixture. Stir until sauce boils and thickens. Reduce heat and simmer for 2 minutes.

In theory the recipe looks great. In practise, my choice of curry powder was apparently not mild. Although I used only 1 tablespoon it was far too hot to really enjoy however, it was obvious that it had the makings of an easy, nutritious meal.

To add to our dilemma, the rice was cooked in the microwave and it turned out like a solid rock in the bottom of the container. Where, oh where did I go wrong?

In spite of the outcome, and the leftovers still in the refrigerator, I will be doing it again in a week or so. It certainly has potential.

Maybe the hot curry was just what Haydn needed to kill of those cold germs which were probably picked up when he stood in the rain with Sonya, waiting for the courtesy coach last Friday night.

Survival

It feels important that I take the time to do regular entries and accept that, at times, they may be short and to the point. With the deterioration in my right arm/hand there may well come a time that I am dependent on voice activated technology to allow me to get my message across. In the meantime I will do my best as a one finger typist.

Feeling very chuffed today as we have been away the past two weekends and I have somehow survived.

The last weekend of May we travelled to Dubbo to visit my beautiful, and much loved, Aunty Pat who is Mum's youngest, and only surviving sister. The weather was horrendous and Saturday night saw Haydn and Uncle Bruce at the trots. The stands offered very little protection from the elements and, like a true punter, Bruce had no intention of leaving before the final race was run.

Fortunately, we were rewarded with good Chinese food that they picked up on the way home.

Haydn bought a new Mitsubishi Pajero back in November; the first new vehicle in many years. It was ironic to find that we had a rock hit our windscreen on the way home. After years of driving second hand vehicles, who would have thought that we would do a windscreen driving through Dunedoo. Oh well! That's life.

This past weekend we joined my very special friend Sonya, and her husband Trevor, in the celebration of his 70th birthday. Sonya had vouchers for a weekend at Australis Resort at Diamond Beach on the North Coast of NSW and we were invited to join them.

Once again, we were faced with horrendous weather conditions, particularly on the Friday night. On arrival at the Resort, Sonya had phoned to organise collection by the courtesy bus to take us to and from the restaurant for dinner. It was booked for 6.15pm. As we stood waiting in the pouring rain tempers were wearing a little thin when it got to be 6.40pm and there was still no sign of Ron in his, 'not so trusty' coach.

We did eventually get to have dinner and were delivered safely back to our accommodation with absolutely no let up in the rain. I think we have had about 4 inches, or 100mls, of rain over the past week.

Saturday we had an enjoyable day and even managed to fit in a movie. Our choice was Robin Hood, starring a couple of favourite Aussie stars, namely Russell Crowe and Kate Blanchett. Dinner at the local Tavern was excellent.

Cannot believe that both weekends have passed and I have taken not a single photograph. Knowing that I want so badly to have these experiences recorded, I will have to do better in future.

Benefits versus Risks

I cannot help but wonder about the benefits and risks associated with some of the medications taken daily in the hope that I will be given time, along with reasonable quality of life.

Towards the end of 2009 I commenced taking Arimidex, which belongs to a group of drugs called Aromatose Inhibitors. These drugs are useful when given to stop the production of estrogen. After three months on the drug I mentioned the debilitating joint pain to my oncologist. She told me to stop taking it immediately.

My instructions were to have a six week break and then to begin a course of Femara (belonging to the same group of drugs.) This was about the 10 December. Approximately 2 days later I began suffering unbearable pain in the right arm/hand. Palliative Care were summoned. I was given an injection that provided almost instant relief. Whew! Don't want to go there again! I believe I actually managed to put some sort of a Post together at the time. I had daily visits from my amazing Palliative Care team until both the pain, and medications, were stabilised.

My General Practitioner (doctor) suggested that the Arimidex may have been controlling the cancer. When it was withdrawn, the pain indicated that it was, once again, on the move. Of course we have no way of proving his theory.

Back to the present.

I commenced taking my Femara in February and there appeared to be no visible repercussions. That is until a routine visit to Dr Milton Sales, (my GP) about one month ago. Not only is this man caring, he is very thorough and believes that more things are missed through not looking than not knowing.

An examination indicated that I could possibly have a thrombosis in the right arm. Sure enough, I was referred for imaging where a Dopler showed a 9 centimetre blood clot. The concern being that it could spread up the arm and could easily move to the lungs or the heart. I commenced a 10 day course of Clexane immediately as well as being put onto a three to six month course of warfarin to thin the blood. This means regular blood tests to check that INR levels are between 2 and 3 indicating that the meds are doing their work.

While visiting Dr Sales yesterday, I mentioned that there was an unusual pain between the wrist and the elbow. He is now confident that the blood clot runs almost the full length of the arm. Blood clotting is a risk factor for approximately 1.2% of patients taking Femara. Dr Sales feels that the benefits outweigh the risks. I am not so sure but will certainly be discussing it with my oncologist when I attend clinic next Wednesday.

There is a 'fear' factor for me. Having experienced the uncontrolled pain of the recurrence in the brachial plexus I am reluctant to discontinue a medication that may well be working effectively to prevent the spread of cancer. I am hoping that my PET/CT Scan on Wednesday gives a clear picture. I am uncertain... finding my current situation quite challenging.

Every day I give thanks for the many blessings in my life and I pray to God to be given the strength to endure whatever it is my future holds.

Playing Mind Games with Myself

These are tough times for me.

I was full of optimism with the move to 67 hectares (almost 200 acres) of bushland in the Hunter Valley in July 2008. The right to the 'good life' had been earned. Or so I thought.

Retirement is what dreams are made of. At last! The opportunity to have a vegie patch and do some of that travelling that had always been just out of reach. Why was it that my health began spiralling downward at that time?

It took 12 months of incredible pain, and many hard earned dollars, to determine the recurrence of the breast cancer in the brachial plexus. The only treatment offered was a 'super size' dose of radiation that left me feeling downright fatigued and yet, optimistic that I would have years to undertake the many tasks that had been put on hold following the death of my beloved Jeremy Jon just days after his 24th birthday in November 2006.

What happened? Why did the cancer eat into the nerves and muscles effecting the use of my dominant right arm/hand? For reasons that I do not fully understand, driving became more of a challenge. Quite possibly, it was the fatigue that plagued me, leaving me just too tired to keep my eyes open. I became less self reliant and more dependent on Haydn to act as my driver and my carer.

My hair had always been my crowning glory. I could go to the store in my house clothes, providing my hair was freshly shampooed and dried. I was secure in the knowledge that people had, for years, commented on my handwriting. The joy of sending greeting cards fast disappeared as I struggled to learn to write with my left hand. Not only had I lost the ability to take care of myself I felt like I was losing HOPE. No longer able to touch type, the frustration of becoming a one finger typist annoyed me. Yes! There is voice activated technology and I may well end up becoming more familiar with it, but for now my motivation is simply not there.

Life can be very cruel! I feel sure many of you will testify to that.

The countryside, once a thing of beauty, now has me feeling trapped. I seem to have lost my confidence in so many areas of my life. Unable to prepare a meal, I rely on Haydn to do the food preparation. I then have to bite my tongue when he shows little respect for my request to, PLEASE..chop the vegetables the same size allowing them to cook evenly. Thankfully, my obsessive compulsive disorder is not fully blown. I have not driven for months. Indeed, my days of complete independence may well be a thing of the past.

I sit here wondering just how I am going to get used to the life of isolation at the farm. If indeed, I have to.

My days consist of medications, indeavouring to keep the pain under control. Meditation, in an effort to empty my mind of the useless, damaging chatter. Exercise, to enable me to retain some use of this somewhat useless arm, thus preventing a frozen shoulder. The extraordinary Palliative Care team always a phone call away.

On my 'better' days, I realise that I still have a story to tell; history and information about myself. All the things that my children, and grandchildren, will one day look back on. An opportunity for them to get a sense of the 'real' me.

What do I want for them to see? Definitely not a wimp. Rather, someone with incredible strength and courage. Someone that did no give up just because the going got too tough. Someone that found the strength to dig deep and to use all that friends and acquaintances bring to the table. This is the time to make the most of all the cyber world offers. When I am unable to get to friends, then I will feel secure in the knowledge that they will come to my desktop.

How could I not smile knowing that I am in the PERFECT place....

Group 33 Lunch at the Farm

Saturday last I was delighted to be in the company of 13 members of my Breast Cancer Support Group. Throughout the past 18 months I have missed many of the monthly luncheons due to pain and suffering, including my inability to drive as a result of fatigue from the medications. The women decided it would be worthwhile to hold a 'special' luncheon at the farm.

The girls arranged to meet and travel together. Several of the women live in the Newcastle/Lake Macquarie region while others reside around Maitland, which is closer to the farm. The first 2 cars arrived. I immediately began feeling slightly nervous; I was expecting around 9 and I had 8. They began pulling food out in Esky Cooler boxes. It had all been planned by Pam [Social Secretary] that Haydn would do meats on the Weber Q barbeque and the group were given responsibility for drinks, breads, salads and deserts. Looked like we were feeding an amy. But where would we sit? Would the weather hold to allow us to sit outdoors?

It was planned that it would be a leisure day for me; their way of acknowledging the stresses of the past 18 months.

A few minutes later and I was surrounded by 13 lovely ladies - along with Haydn and myself. I felt slightly distressed when it became painfully obvious that I was no longer able to press the button to activate the shutter on the camera. Fortunately Margaret was a willing party and took lots of lovely pics, although I was too distracted by the great company, food and laughter to remember to get Haydn to take a snap of the group as a whole.

We really did have a delightful day! Plans were put in place for a winter luncheon which would enable us to sit around the combustion fire, burning wood felled on the farm, and split by Haydn for exercise and fitness. Maybe even a walk up the mountain could be arranged .

The travel time home did not appear to phase them as it was 4.45pm before anyone made a move to leave. I was presented with the most magnificent bunch of liliums that I had ever been given although I really felt that it should have been the other way around.

It was a fantastic day and I did not lift a finger. I came into the kitchen to find the dishes done and leftovers in the refrigerator which meant no cooking for at least a couple of meals.

Cheryl on the left with Chris

Lunch is being served

Haydn entertains the girls and talks about life on the farm

WOW! In appreciation. The buds were not yet open so I am enjoying them now....