The Events as I Know Them

'As to diseases make a habit of two things - to help, or at least, to do no harm'

- Hippocrates, Greek Physician

Thank you to all that have taken the time to email, or get in touch regarding my test results. Your thoughtfulness is comforting... and very much appreciated.

After what felt like a very long wait I have now seen my absolutely brilliant oncologist. I like what I see even more the second time around. As Dr Andre Van sat at his desk reading the report he began to feel around my neck region. I, very bravely, asked him if it would make it easier for him if my clothing was removed. That done, he continued to probe... while reading. Initially he questioned his perspicacity in requesting the tests, however, as he went on he began to see the wisdom of his decision. It was only when the nurse entered the room that he became aware that we had not followed protocol by undressing behind the curtain.

What was thought to be a problem in the right lung is a collapsed lobe as a result of radiation damage; it could, in fact possibly be a small mass. That will be observed!

As thought, there appears to be a change, with suspicious nodal metastasis in the right axilla.

There is some confusion owing to the increasing size of several lobular masses in the area of the right supraclavicular region with associated bone destruction. Given that Dr Van was seeing me for only the second time, he impressed me with his willingness to seek information and answers. On reading previous reports, he suggested that a biopsy of the lesion in question had been performed. I felt ready to dispute that when he told me the date and location of the test. I quickly realised that, at that time, I was searching for answers; looking for a reason for the unbearable pain that had me screaming in agony each and every day. I have few memories of that time other than the pain. What I do remember is the first time I was given opiates and the sleep that came easily. Alleluia!

It seems there is one mass in particular that was positive prior to radiation. It was the very thing I thought the radiation was to address. To learn that it has been there the whole time, and has grown, came as a surprise as I have had no treatment for it. OK So I am grateful to this wonderful doctor who is giving me yet another chance, however, there have been several emotions processed to reach this point. It would seem the radiation has been of little, or no use, and may even have done more harm than good.

Dr Van did say I am not without options. He made a phone call to my Radiation Oncologist, followed by a call to Dr Logan who is an Oncological Surgeon. Miraculously, I have been given an appointment for a consultation with Dr Logan on 11 March.

I am going into this with an open mind, however, it  does appear that my options will be limited due to the build up of fluid in that region and the degree of damage from radiation.

In the meantime, my Femara has been replaced with Aromasin (exemestane.) I have been warned of the increasing susceptibility to joint swelling and pain with this new medication.

This entry has been done in record time for which I apologise. Do hope you can make sense of it. As one week has passed since my appointment you know it is not my 'usual' style to leave it this long to report. I am really trying to get my head arounds these facts!

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?

Frustrations and Life on the Farm

'Consult not your fears but your hopes and dreams. Think not about your frustrations, but about your unfulfilled potential. Concern yourself not with what you tried and failed in, but with what is still possible for you to do.' Pope John XXlll

Knowing that 1 January 2011 brings with it an opportunity for change, I cannot help but reflect on life as it is today. It seems only natural to  recognise that unaddressed anger is a real possibly. It is one feeling that I have always had difficulty with. As I endeavour to write from a positive perspective in order to lift myself and inspire others, I know it is time to be honest with myself.  I am sure that deep seated anger does, in some way, contribute to my breast cancer!

As my struggle with peripheral neuropathy in the lower extremities increases, and the degree of pain, including nerve and muscle damage, develops in my right hand, I have become increasingly frustrated with my inability to manage daily household chores. The isolation of rural living, medication and chronic pain all contribute to depression which, in turn, leads to lack of motivation. I now acknowledge that Femara is instrumental in causing the fatigue that makes life almost unbearable at times. I sometimes omit to take it and within 24 hours my sleep requirements become somewhat normal.

The garden has become overgrown; pests are becoming a problem. Mealy bug, borers and scale are currently causing serious damage. Haydn is a great one for spraying Round Up to control the native couch. Fortunately, we have now learned that glysophate locks up trace elements and we have been able to add it, along with organic matter, to improve the soil. Haydn loves the tractor and works tirelessly on pasture improvement but is not interested in maintaining our shrubs. As a result, they are becoming overgrown. The bush garden in memory of Jeremy has never been finished.

I am wondering if the time will come that I am once again able to drive myself? If not, then it seems fair to say that life at the farm will be unbearable. It has become very difficult for me to think positively and act accordingly as one day stretches into another.

Rather than focus on lack of/problems I intend to see the New Year as a way of making changes to improve my quality of life.

Have I recogised my Frustrations and how do I act on overcoming them?

What are my Hopes and my Dreams?

How do I go about reaching my Potential?