Way of the Warrior

'Generally speaking, the Way of the Warrior is the resolute acceptance of death'

-Miyamoto Musashi

On Thursday of last week I kept my appointment with 'Dr Amazing,' in spite of the fact that I had only commenced my first cycle of oral chemotherapy the day before. I find it interesting that when I make my appointments at the front desk, I invariably get a phone call prior to the date to say the time has been changed to 12.30pm which is the final morning appointment, thereby allowing more time for him to spend with us. I know how beneficial the time is for me and I would like to think it goes both ways. May God Bless you Dr Amazing! Up to that point, in my mind, I had continued to come up with any number of 'valid' reasons for delaying the chemotherapy process. Eventually, out of respect for the good doctor, and, as a 'duty' to myself, I gave in and took the first of my tablets.

Doctor made no comment regarding the delay. He simply explained that it did not matter what I did, this 'monster,' as I have come to refer to it, is not me. It is a mutation, distorted cells that have now chosen my body as a host. He again advised that, with my type of cancer, the success, or otherwise, was always an unknown. The consultation raised many emotions, firstly for Haydn and me, and then for the doctor. We let him know that we have discussed the situation at home and felt that retaining some 'quality of life' was more important than 'fighting,' doing battle to add maybe weeks or months to the natural outcome. As he observed the chest wall, he talked about his role in healing, doing what he is trained to do because that is his chosen field of work work. To prolong life is his aim. Here we are discussing the direction we have chosen and he shed a tear as he said he also needs to be able to come to the same place of acceptance in which we appear to be. It was rather nice to have him gather a tissue from the box and 'shed a tear' with us. I expressed my gratitude and thanked him for what I see as a real blessing. If I must go through this it is comforting to know we are on the same team.

He then asked about blurred/double vision, shortness of breath etc, explaining that he would like to do CT Scans to rule out spread to brain, lungs and liver. Given that I have had mild headaches and shortness of breath since my last scans, it makes sense to check particularly as my last doctor's visit with my General Practitioner led me to believe this would not 'kill' me. Where to from here then?

Although my local doctors tell me this is not common, I had an ACAT Assessment last week to see if I am eligible for Government funded assistance to 'free' Haydn up at home. The assessor was Chinese, very practical, with nursing experience in hospice and palliative care. She was not surprised by the description of my chest wall, saying it was quite common, even in young breast cancer patients. I liked her idea of trying yoghurt, which is apparently very cool and soothing. Definitely worth a try on a smaller area!

All in all, there are no real surprises. Tomorrow when I see my general medical practitioner, I will discuss with him the necessity of prescribing suitable pain medications knowing I would like to ensure I am as comfortable as possible for as long as possible.

'Change Starts When Someone sees the Next Step' - William Drayton

'Change is the essence of life. Be willing to surrender what you are for what you could become.'

- Author Unknown

Thursday morning arrived; we were up early in readiness for our departure to attend my 8am appointment with the Physiotherapist at the Mater Hospital. Leaving the farm before 7am left me sufficient time to pop my head into the radiotherapy waiting room. I wanted to check if my Sister and Brother-in-Law were there. B-I-L Brian is currently undergoing radiation, following hormone treatment for prostate cancer. Unfortunately, our paths did not cross on that day.

I headed upstairs and waited in anticipation of Judith's arrival. Her face broke into a smile when she recognised me. Interestingly, my file was not available, due to my appointment with 'Dr Amazing' as Emmy now has me referring to him. Shortly, there was a knock at the door heralding the arrival of my file. I was impressed! The Mater is a huge facility. It is very easy for things to go missing, which was the case with my scans recently. They did not reappear for months.

Judith noted that it was 14 months since my last appointment.  I was happy to give the explanation that her instructions were always clear, allowing me every opportunity to undertake practise on my own. With a home based programme, along with regular Tai Chi and Yoga classes, I have been successful in my efforts to keep the swelling under control. It is only when changes occur that I get myself into trouble. This appeared to be one of those occasions.

It was a surprise, and somewhat of a relief, to hear her say the lower arm was surprisingly soft on examination. A good starting place!  We have learned from experience that manual lymphatic drainage is not necessarily a good thing for me owing to a case of cellulitis following treatment with another therapist. During the examination, she was able to check areas that would be effected by spread to the brachial plexus. She did speak to me as she worked, noting both good and not so good points.

I let her know that Dr Andre wanted her to call him at the end of our consult. The hour went quickly. I felt comfortable to question her on her findings, asking her about her 'report' to 'Dr Amazing.' She did say that in spite of the 'positives' she was concerned about many issues.

At lunchtime on Friday, Haydn and I had gone downstairs to our vehicle when we heard the telephone ringing upstairs. There was no way we could make it back up in time to answer it so we made the decision to let it go to Message Bank. It was then the Cell Phone began to ring however, it was in a bag on the rear seat. Oh well! Time to attend to those calls on our return. That was not to be! The upstairs phone rang again; Haydn went bounding up the stairs three at a time. He called loudly to inform me that it was the Mater Hospital advising me of an appointment had been made for a PET Scan. As I headed upstairs the Cell Phone started again. This was getting to be ridiculous! This time, breathing heavily, I answered it to hear the voice of 'Dr Amazing.' He too was ringing to let me know about my upcoming PET Scan. My mind was ticking over. This sounds like 'serious' stuff.

Paul Comes Good

"You cannot poison your body into health with drugs, chemo or radiation. 'Health' can only be achieved with healthful living."  -T.C. Fry

Yesterday, while visiting my General Practitioner, I found yet another reason to hold him in high regard. He took the time to explain the likely outcome of my soft tissue lesion. Having previously been told by the surgeon that, in his opinion, surgery could do more harm than good, I have been at a loss to know in which direction to turn. Dr Sales likened my tumour to the body of an optopus. Should that body be removed,  it would still leave arms (tentacles) intact. The surgery could leave a gaping wound that may not heal, as well as active cancer in the many area of the tentacles. With disruption to the blood and lymphatic system, and without efficient circulation of both, skin function would be severely impaired resulting in congestion and build up of waste material in the tissue, ultimately causing tissue death. The end result is a fungating wound not able to heal. Apparently they are very confronting, as well as being extremely smelly and uncomfortable. Definitely something to be avoided!

I mentioned to Dr Sales how much I appreciated the fact that he had taken me on as his patient when my own doctor, of long standing, had given up on me. We made a pact (kind of) that he would continue to seek answers as for as long as it takes. It is a very special human being that takes on a new patient with a chronic disease when his books have been closed for years.  I am also Bulk Billed, meaning that he makes practically no money from me.

Tonight I am also pleased to be able to say that I have now had a phone call from Paul, my Biochemist friend. Without saying more than is necessary, I feel it is critical to point out that Paul is no longer able to practise in his chosen field. He was written up nationally as being a 'cancer con man' in 2005 and, after a lengthy court battle, he lost all rights to practise as well as all computer records. I remained loyal to him as I felt his past had nothing to do with my present, and treatment. He has always said he is very grateful to me and will do whatever he can to be of assistance.

When he called me today he explained that people do not always get back to him when they say they will, plus the fact that he is dealing with different time zones. He assured me that he will always come good, however, it may not be in 'my' time. Thanks Paul. I was also interested to learn that many people still hear of him by word of mouth and he spends quite a lot of time seeking appropriate treatment for those in need. Not bad for someone that is a 'con man' and who does not receive any payment for the work he does in spite of being in an unfortunate financial position.

He apparently has a 'consensus' and has come up with a 'plan of action' for me. I will have to order some Chelated Potassium online bit will be able to purchase the other product recommended at my local Health Food store.

I remain optimistic that, with appropriate treatment, we will be able to prevent this lesion breaking through the skin's surface where it could do a lot of damage.

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?

Shh! Don't Talk

‘Two are better than one; because they have a good reward for their labour. For if they fall, the one will lift up his fellow: but woe to him when he falleth; for he has not another to help him up.’ – Bible: Ecclesiastes
Yesterday I suggested to Haydn that I would be looking to make plans to move next year. As you know, I struggle with the isolation and loss of independance. My cancer has robbed me of that!  As only Hayd could, he said  'Where would you go? Who would look after you, nobody wants you?' Good one Hayd! Fighting back tears, I said little except that the decision would be mine. And mine alone! I live with the belief that 'things work out best for people who make the best of the way things work out.'

The past couple of days have been particularly difficult. There have been many tears shed, and much swearing, particularly when I found myself unable to throw the sheets over the line. I now have limited range of movement in my right arm and shoulder. My pain meds have been reduced in the hope that the chronic fatigue will miraculously disappear however, I am adjusting to increased sensations in the inflamed nerve endings.

 I have taken the following lines from  Paul who opened my eyes with his posting of Desiderata....
'But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.' 
It seems, at times, the fatigue and loneliness is 'playing with my mind.'

This afternoon Haydn arrived home with his 'Shh! Don't say a thing! Just listen to what I have to say.' He proceeded to tell me that he thinks it would be a good idea to buy a caravan. Last year we purchased a new Mitsubishi Pajero 4WD with that in mind. I think it was my decision that it was all too hard; my pain had returned with a vengeance and I was not in a good place. The thought of being organised enough to pack and unpack a van seemed like hard work. As the owner of industrial sheds in Newcastle, there is always work to be done; Haydn likes to be busy. We would be able to take the van down and stay for a few days, allowing Haydn to work on the sheds and me to receive much needed therapy for my lymphoedema etc. Of course, there would also be the opportunity for socialising. Haydn feels we could take the van across to the coast and spend time. I am a little uncertain as Hayd is a 'worker' and finds it very difficult to relax. He does not enjoy being a 'tourist' so it would mean changes. The big PLUS for me is that we would be able to visit my children. God willing. Yeah!

Aries are 'Carers'

Haydn and I, both widowed, met and married in 1996. Although we separated, later divorcing, we remained the very best of friends. It was a tragic set of circumstances that made living together almost impossible; those that know us are not surprised that we are still together. This came about, more or less, as a result of my Breast Ca diagnosis. Haydn was prepared to do everything possible to give me the very best chance of survival.

I continually ask myself what has changed?  These are uncharted waters for me. For as long as I have know Haydn he has stated, most emphatically, that Aries are 'carers.' He wears it as a badge of honour. He has a daughter that now mimics his words.

Why do I not feel that I am being 'cared' for? What do I say when I am not in agreement? It seems to me that anyone can be a carer; people get paid to work as carers. Being someone that cares is quite different. I remember reading somewhere that the person that cares least in a relationship, rules the relationship. I suspect there may be some truth in that statement. I think it was the poet H.W. Auden that said 'If equal affection cannot be, let the more loving be me.' All the more reason to embrace my current situation and learn to be more loving.

Maybe I am being overly sensitive, but it is almost as if duty calls when Haydn does things for me. I feel so very vulnerable these days that tears are a common thing. I am immediately told to 'STOP BEING EMOTIONAL.' Why won't he listen when I try to explain that tears are an essential part of the healing process? For me, at least.

Many of you know that the isolation of life at the farm has presented many challenges. I willingly moved to the farm at the time of our retirement, secure in the knowledge that I owned a motor vehicle and held a Driver's Licence. I still hold the Driver's Licence but do very little driving. Fatigue is a common side effect of the medications that control my pain, allowing me to function, albeit at a much lower level than I am used to. The return trip to the city is 180 kilometres and it seems I may never drive that distance again. I will never put myself, or others, at risk. Maybe I have lost my confidence. Who knows?

The thing about Hayd is his love of all things farming. He heads out first thing in the morning. Lunchtime comes and he will come in and get his own lunch. What is wrong with me having the expectation that he will at least consider me? I just don't get it! Food is not really a priority for Hayd, he claims he eats to live. Knowing that healthy food choices are important for me at this times it concerns me that I find myself dependent on someone to assist with food preparation. There must be 'gadgets' out there that will allow me to live a little more independently. I feel extremely frustrated that I am unable to chop, slice, peel etc. Even making a salad sandwich for lunch [using the left hand] can be very difficult.

How do I learn to 'EMBRACE' my current situation?  I have to be asked to be driven to doctor's appointments. I miss attending therapy sessions because I have no way of getting there. My arm is swollen with lymphoedema and I have enrolled in the Encore hydrotherapy programme, without knowing how I will get to weekly sessions. I miss my friends, and the lunches, and group meetings that were part of my life. It seems like it was another world. Haydn and I have never had mutual friends. He likes to live the life of a recluse. Gardening and domestic duties are on the back burner for me these days because of the disability that I am learning to live with. In spite of all of this, my 'real' issue is the fact that I live with someone that claims to be a 'carer' and he does not 'care' enough to ensure that we eat healthy and nutritious meals together.

I suspect there is more to this......

Back on Track..

There have been some highlights at the farm, with the arrival of nine calves recently. This is our new 'baby.' It is fascinating to observe animals in nature. The calf knows instinctively to belt the mother's udder with its head to let down the milk. The cows that have given birth are only heifers themselves, meaning this is their first calf, and yet they make great mothers. As soon as we pulled up in the ute, the cow edged away with the calf. This was mainly due to MY presence; they are used to Haydn, but not me.

My week has been less than pleasant as I struggled with laryngitis and the accompanying sore throat. It has been going on far too long! I missed both my Tai Chi and yoga classes and have been unable to make phone contact with friends, causing me chronic withdrawal symptoms. Why is it the words 'This is the day that the Lord has made, we will rejoice and be glad in it...' pop into my head? There has to be a message there somewhere.

Today, we used the last of the fruit and vegetables so shopping has become a high priority. Only problem is my complete lack of pizazz. I can only guess that it is somehow related to the energy being used to fight this 'bug.' But then again..it could somehow be related to the boredom of being here for a week with no contact with friends or neighbours (present cyber friends excluded.) Truthfully, I have hardly had the fortitude to turn on the computer.

In the meantime, I have found the burning, stinging, pain and irritation in the right arm to cause me a great deal of angst. I do not often ask 'Why me?' but somehow I have found myself to be having the occasional 'pity party for one' in spite of the fact that they are not much fun. Knowing that I have made little time for lymphatic drainage and exercise exacerbates the problems. I really do know better.

I had been looking forward to the opportunity of a luncheon tomorrow. My friend Sue, owner of Cabins in the Clouds, is hosting a get together in readiness for a Breast Cancer Fundraiser to be held in October. As Sue is appearing in a local GAPS stage presentation next month, the last thing I want is to inflict her with whatever it is I have. In actual fact, she found herself with a similar problem after the Christmas Carols last December; it took her some time to fully recover.

So, tomorrow can only get better. I pray for increased energy and healing for myself and all my friends that deal with adversity in its various forms.

May our lives be blessed....