Thursday, January 27, 2011

I am Being Tested

All human wisdom is summed up in two words ~ wait and hope
- Alexandre Dumas Pere

In spite of my very best intentions, it seems I am to be tested. Having spoken to Dr Van's secretary on Tuesday I was expecting to hear from him either today or tomorrow with my test results.

Today I did receive a phone call from Dr Van's secretary. She advised me that the test results are pending and doctor is going on leave tomorrow.  He has therefore advised me to keep my appointment on 24 February. I guess that leaves me little else but to wait and hope. I am grateful for the phone call although it did not stop me from sobbing uncontrollably at the news.

In the meantime, I am looking at my left arm which now has a large pocket of fluid at the elbow as a result of the cannula being inserted for the contrast and isotopes. I have no idea what that means but I do know that I feel some concern at anything that has the potential to cause me problems with the only arm that works. It is bad enough that I have severe carpal tunnel symptoms as a result of using my left hand on the keypad of the laptop. Something I can only change when I have my new laptop set up with Dragon, speech recognition software.

Speaking of which, I had been advised by the retail store from which I purchased my new notebook computer in December that the cost of the data transfer would be $140. Given that my thumb is continually numb from RSI symptoms I phoned the store this morning to enquire as to the length of time it would take to do the transfer. I was informed it could be done today. I quickly showered and headed in only to be told on arrival that, as I had not done my own set-up, there would be an additional cost of $99 and it would not be ready until Monday (today is Thursday.)

Haydn made it clear that it was his belief I would not be able to live without the Internet for four days and he would not be able to live with me. Needless to say the computer came home with me.

I remain hopeful! Any suggestions on how to wait patiently?  

Wednesday, January 26, 2011

Oh No! Could I be Turning into a Wimp?

'Feed your faith and your fears will starve to death.'  ~Author Unknown

Although it was my intention to continue with 'Why I am Where I am' I have decided to deviate. Dr Andre Van Der Westhuizen (Medical Oncologist) endeared himself to me at the time of our initial consultation, as you know. There was a sense of relief when he referred me for CT Scan and Bone Scan. As a new treating practitioner, I appreciated that he wished to have a clear picture of my condition. Having been on Femara (Aromatase Inhibitor) for 14 months, it is important to check bone density; the scan will  also show if the cancer has spread to the bones. More importantly, I believe these test results will give some indication, and reason for, the increasing size of the lump on the clavicle. As there are new lumps below, the results will, hopefully, prevent any further speculation on my part. Dr Van indicated he has not seen anything like this previously and stated that my case is most unusual ~ a 'double edged sword?' 

When Dr Van mentioned that he would telephone me with the results I apparently gave him a 'look' as he quickly corrected himself saying 'Not a good idea!' We discussed the way in which news could be delivered and he then suggested I make an appointment to see him.  My appointment was made for 9 February. Prior to the tests being carried out I received a letter from Dr Van's secretary stating that my appointment had been changed to 24 February. As you know, waiting can be difficult!  A month just too long for me to wait. Beth at Calling the Shots has done a 'must read' post,'Reduce Your Wait for Medical Results.' As is often the case, there is a 'synchronicity' among bloggers. I decided to  approach the reception desk to ask about having Dr Van telephone me with the results as soon as he has them. I suspect that being a large 'public' hospital I am just another number and I know the clinic sees around 200 patients each day it is very easy to get 'lost in the system.' By Friday, I will be making my first 'follow up' telephone call.

As many of you know both tests were carried out yesterday; I was a bit of a wreck when I arrived home, not only as a result of the testing but due in part to the hot weather. It was 40 degrees Celsius (approximately 104 Fahrenheit.) Tests have not presented any real problem in the past and, although it is a long day, it is normally a 'breeze' for me. We left the farm at 7.30am, arriving at the hospital at 8.45am in time to drink the required 1.25 litres of water in readiness for the CT Scan. The technicians were fabulous; no difficulty accommodating me and the fact that I am no longer able to raise my right arm above my head. There is always some concern with the use of contrast as I have been known to collapse as a result of eating shellfish. Fortunately the staff were prepared for any emergency!

10am and I was ready for the Bone Scan. The cannula had been flushed and remained in place ready for the injection of isotopes. Found a comfortable seat in the coffee shop, sun streaming in through the glass windows, where I ordered a cup of coffee and a toasted cheese and tomato sandwich.  After a two hour wait it was time for the next stage. As my legs and arms were strapped into position I began to feel agitated knowing that my right arm, being a lymphoedema limb, is prone to after affects should the strap be too tight. I asked them to loosen it slightly. Unfortunately, I was not told the assistant had left the room and the procedure had commenced.  I immediately became aware that I had no control over my right arm. My fingers began to curl, my level of concern increasing as my arm and fingers began to twitch uncontrollably. In no time the assistant was beside me to tell me my arm had slipped stopping  the camera, hence the machine. I apologised, explaining that I had absolutely no control. She suggested that I 'hold on' until the machine had passed my hips and she would then be able to release my arms allowing me to cross them over my chest. I think I used every muscle in my upper body in my endeavour to hold that arm close to my body. It was the longest 20 minutes of my life. There were tears in my eyes as I tried to think of more enjoyable times. I was feeling the frustration at every level!

Fortunately, another technician recognised my dilemma as she observed from behind the lead glass and suggested  it could be done differently. For stage two in which the machine was to go around my body, I was placed in a wide band similar to a 'straight jacket.' It wrapped around my body and arms from the wrist to the shoulders. Even with the security provided from this band, my arm and hands refused to obey instructions leaving me fully aware of the deterioration. I had no idea what my right hand was doing but it moved constantly and my arm was at odds with my mental instructions; it was out of control Keeping it still, and by my side, was an impossible task. I was feeling like a wimp and under no illusion as to why activities have become so much more difficult for me. I honestly felt as if I  did not want another scan. Ever!

Do you breeze through your scans, or do you sometimes feel you have 'had enough' of them?

Monday, January 24, 2011

Why I am Where I am

'I love you not because of who you are, but because of who I am when I am with you.'
-Roy Croft

Maybe the next few posts will not be riveting reading for all; for those that stay with me on this journey I expect it will take us in several directions.  My approach to life has always been rather eclectic, as I use a variety of methods to allow me to 'deal with' any challenge/task. I do hope that writing these posts will provide some clarity in my life.

I know about 'soul' searching having done quite a bit lately. As a result, I feel as if I have reached a fork in the road. I am painfully aware of 'taking myself wherever I go' which makes it difficult to 'avoid' pain and suffering should it is my own. Many of you know, and understand, the depth of feelings developed over time with fellow bloggers; they become life altering. One such blogger is Brenda @ Breast Cancer Sisterhood who writes poignantly of the death of her precious James on 26th December, 2010. Brenda, writes of the love she and James share and has written in such a way as to open wounds that I felt had been put to rest.

When I married my late husband Ray in 1967 little did I know he would show me the meaning of 'unconditional' love. During our 27 years together I enjoyed the privilege of being loved and accepted, in spite of my many faults. At the time Ray was diagnosed with a brain tumour it was necessary to leave our squash and fitness centre to allow him to undergo surgery in Melbourne. Damian, who was about 18, along with a close personal friend Marianne Hocking stepped up to the task. Jeremy, our 7 year old, with farmed out to the most amazing family. Leaving him with the Allen family enabled me to spend 18 weeks with Ray during his neuro and thoracic surgery. The procedures took much longer than expected. Ray was paralysed down one side as a result of the first operation. Rehabilitation was required before he could undertake surgery to remove the tumour on his lung. The lung tumour was discovered during testing for the brain tumour. We survived that period and, somehow, I was able to spend every day, and most nights, by Ray's side. The nurse's quarters became my 'home' away from home. Thankfully, Mum had travelled from Dubbo to be with Ray and me after his initial neuro surgery. She then headed up to Lakes Entrance where she was made to feel welcome by some of our close personal friends.

Four years later Ray went into a coma; it happened suddenly. Jeremy helped me to carry his Father into the bed he shared with me. I phoned my Mother in Dubbo who agreed to catch the train that very day. Mum's presence allowed me to climb into bed beside my darling Raymond. I stayed beside him in the bed for the last five days of his time on earth. At times we were visited by loving family and friends; loved ones that had come to say their goodbyes. I remember that time well! I often feel guilty thinking of things I had done prior to that time. Things I am not proud of. I ask Ray's forgiveness.

I recollect so well the sense of peace that came from sharing the journey; it seems I was led. There are lasting benefits to sharing a love which is timeless; a love in which I feel treasured/secure. There is no room for jealousy, there is only pure love. With love all things are possible.

To meet and to part is the story of life; to part and to meet is the glory of life

Thursday, January 13, 2011

QLD Flood Crisis

We ran as fast as we could says Queensland woman.
The above picture was taken from ninemsn and it is certainly a case of 'a picture being worth a thousand words.' A Queensland woman said she and four others ran for their lives when a large crack in the ground turned into a giant pit.

The death toll currently stands at 15 with 61 still missing.

Although I have not been blogging on the situation I have used Facebook as a means of allowing interested friends to keep abreast. Social Networking sites are abound with stories and offers of help. The television shows images that will remain etched in my memory forever.

Thousands of homes in Brisbane are already underwater. I have a sister in Brisbane that is without electricity. Her neighbours on the low side of the street are expected to go underwater while she and my brother-in-law have their own garage filled with the furniture of several neighbours.

Goondiwindi is expecting to peak at 10.85 metres.. The levy bank around the town was designed and built in 1958 and is expected to hold as it is designed to take waters to 11 metres. The hospital and aged care facilities have been evacuated as a precautionary measure.

There are amazing photos of yachts on the Brisbane river breaking up and sinking. Miraculously, people on the yachts were rescued.

The Queensland Premier, Anna Bligh has shown the most amazing leadership in face of adversity. Although I was not necessarily a fan of hers prior to this event, she has been elevated in my estimation.

Much of our 'fresh' food is grown in Queensland. Thankfully, the season is almost finished and our fruit and vegetables will soon be coming out of Victoria. There are signs of 'panic' buying as people try to 'stock-up' on essentials. Bread and milk are completely missing from many supermarket shelves. There are pictures of a Coles supermarket in Ipswich completely underwater.

There are heart felt stories of residents having lost everything themselves, reaching out to others. Lives lost in an effort to check on the property of others. These floods do bring back some memories for me. As a youngster, my family were inundated during the floods in Dubbo. I am unsure if it was 1955 or 1956. We lost everything. All personal belongings were swept away when the Macquarie River flooded.

I ask you to hold the people of Queensland in your thoughts and prayers please. There seems to be little else we can do. It is times like this I feel anger knowing that pain and dysfunction prevents me from being in Queensland, sleeves rolled up and assisting in any way possible.

The question is being asked 'Are the Queensland floods Australia's worst natural disaster?'

Wednesday, January 12, 2011

11.1.11 Celebrating Life

The day which we fear as our last is but the birthday of eternity - Seneca, Roman philosopher

 Celebrating my birthday on 11.1.11 was quite special for me. Not for any reason other than there have been times I doubted I would make it.

This beautiful Birthday Post Card was organised as a surprise. My special friend Kaz, a resident of Maine, posted this on my Facebook wall. I was overcome with emotion! It is definitely something to be printed onto canvas for framing. Thanks Kaz for this 'Memory Moment' which I will treasure all of my days

As my regular readers are aware there is a 'family history' of birth/death in the same month. Always the question to be asked 'Is this the year?'

Interestingly enough, I saw my doctor on my birthday. The discussion centered around the outcome of last week's appointment with my 'new' oncologist. Dr Sales said he felt there had to be 'just cause' for extensive testing given my situation. It was not simply about furthering the education of the medical profession. As I was unsure of what he meant, I asked him to 'please explain?' He made it clear that, given the tests were likely to show the reason for growth and increasing pain on and around the clavicle, as well as hard nodules below, there had to be treatment options available. The answer is a definite 'Yes' although my thoughts, at this time, are that 'quality' of life will always take  precedence over 'duration' of life.

As with most things, that is easy to say now. Time will tell! After all,Damian and Tyneal will present me with the gift of grandchild number 10 in June.

Sunday, January 9, 2011

The Christmas Gift that is not 'Mine' to Keep

Oops! After many attempts I am 'over' trying to get this picture rotated for easy reading. I did my best, however the 'system' beat me followed, closely by my inexperience.

For some time prior to Christmas my stepdaughter Claire had asked me for my 'favourite' quote. She appeared to be very excited! The reason behind the request was apparently very 'hush, hush.'

I was slightly perplexed, not having an 'all time' favourite in the 'general' category. Still she was reluctant to explain the reason behind her requisition.

She visited us at the farm prior to Christmas which gave us the opportunity for a 'deep and meaningful' conversation. I expressed my love for her, along with my concerns regarding several aspects of her life. I must be honest with you; I was brutally frank in explaining that I am doing everything I can to stay alive and it bothers me to watch her destroying herself with, what I see, as an eating disorder. Claire assured me that she does not have a 'problem.' In fact, she simply 'forgets' to eat. Avoiding friends who choose to comment on her weight is also not a good idea. As nothing works in isolation we all need friends, they are to be valued and appreciated. I did not hesitate to remind her of this.

I even suggested to her that there is not a family member to take on the role of 'mentoring' after my death. It would give me peace of mind to know that she is making appropriate changes.

Coincidentally, I then found the following which I felt was 'perfect' for Claire. I decided to paste it on her Facebook wall as a way of affirming my words to her:
'I love you, and because I love you,
I would sooner have you hate me for telling you the truth
than love me for telling you lies'
From Chez

I certainly did not post it because it was 'MY' favourite quote!

There was great fanfare on Christmas Day when Claire gathered the family to make her presentation to me. She spoke of the 14 plus years that I have been her Stepmother; she was 12 at the time of her Mother's passing.

She lifted her T Shirt to uncover the tattoo; her Christmas gift to me  for 2010.

How do I feel about the gift? I really don't know! I believe it is her right to make decisions regarding her own body. Will she regret it later? Only time will tell. Deep down, I do admit to feeling deeply touched.

'Better a serpent than a stepmother' - Euripides

Wednesday, January 5, 2011

I'm in Love!!!

'There is a light in this world, a healing spirit
more powerful than any darkness we may encounter.
We sometimes lose sight of this force
when there is suffering, and too much pain.
Then suddenly, the spirit will emerge
through the lives of ordinary people who hear a call
and answer in extraordinary ways.'
Mother Teresa

No! I am not in love with the man personally.  I simply love who he is and how he goes about doing what he does. I am talking about my new Oncologist. What a joy he has turned out to be!

It was June 2007 that I realised I had a recurring problem. Just 6 months after Jeremy's accident I discovered a lump in the region of my previous mastectomy. It was not until April 2009, and suffering considerable pain, that my problem was diagnosed. I was advised that radiation was my only option; recurrence in the brachial plexus a rare and painful condition. Thirty hits of radiation later I was given the 'all clear.' Unfortunately, within one month it was obvious that the 'problem' was far from 'fixed.' I was then referred to Dr Janine Lombard who was to become my Medical Oncologist. I saw her twice before she went on maternity leave. For the whole of 2010 I was subjected to different doctors with varying opinions.  As the result of a PET Scan in June I was told that my results were 'exceptional.' I was elated! It appeared that the results from Femara had exceeded all expectations. I became a little concerned in September when, yet a different oncologist disregarded my concerns for the lump which was growing on my clavicle, then.

I then spoke to my own medical practitioner who recommended a CT Scan in a letter to my Radiation Oncologist. My appointment was in December which did not seem to be the 'right' time to push for further testing, even though the size of the lump was increasing with several new hard lumps in the region of the chest wall. I decided that as my radiation oncologist was not concerned I would 'let go' of my own worries.

My appointment today was to see Dr Andre Van Der Westhuizen. I knew nothing other than his name and the fact that he had arrived from South Africa to take over my care from Dr Lombard. My initial reaction was favourable and within a short time I knew I had struck 'gold.' Dr Van Der Westhuizen informed me that I would be on Warfarin and Femara (or some form of chemotherapy) for life. When I said I thought it would be for a period of five years he quickly pointed out that was for patients not living with metastatic breast cancer. In answer to my concerns regarding the lethargy/fatigue he said that, unfortunately, will also be a lifelong problem.

Dr Van quickly noted the oedema/lymphoedema in my right arm, along with loss of function. He also appeared surprised to learn that I still manage to find a way to undertake yoga and Tai Chi classes. I pointed out that both are an effective means of moving the lymphatic fluid. On reading the clinical notes he was amazed to learn that no further testing had been recommended during my September consultation, given that the lumps were increasing in size. How could there be such dramatic changes in a three month period?

I was given a request for Ct Scan and Bone Scan. Somewhere there is also to be a scan of my liver. Doctor Van did make it clear that the lesions? on my clavicle and surrounding area are most unusual, especially as the area is often extremely painful. As a starting point, he feels a clear picture, indicating my current condition, is essential.

As we said our goodbyes he placed his arm around me and said gently 'I really hope these tests  give us a 'good' result!' For my part, I will make every effort not to worry unless I am given just cause.

What a delightful man!

Sunday, January 2, 2011

Prayer of St Francis of Assisi

Lord, make me an instrument of Thy peace; where there is hatred, let me sow love; where there is injury, pardon; where there is doubt, faith; where there is despair, hope; where there is darkness, light; and where there is sadness, joy.

O Divine Master, grant that I may not so much seek to be consoled as to console; to be understood as to understand; to be loved, as to love; for it is in giving that we receive, it is in pardoning that we are pardoned, and it is in dying that we are born to Eternal Life.

For many years I have carried this quote on my person, frequently taking it out to meditate on the words and their meaning before going on to ask myself

'Am I sowing the seeds of love, pardon, faith, hope, light and joy?' If not, why not?

Please remember also my dear  friend Brenda who is mourning the loss of her beloved husband James who passed away suddenly this past week.
May you rest in Eternal Peace James Coffee.