Is My Heart is Elsewhere?

'Impossible situations can become possible miracles.'

 – Robert H. Schuller

Not looking too bad at the end of May

Not looking too good at the end of July

Both Haydn and I feel incredibly sad as we observe my body, and its ability to grow this disgusting, fungating, odorous mass. It is difficult not to be affected by the sight and odour as it is right under my nose. 

My right arm is now akin to a lump of lead hanging loosely by my side. I have to practically stand on my head to dress the top half of my body; makes dressing interesting, and slow. Thank goodness for pull up stretch jeans.

On Friday we had a 2 hour wait to be seen by the Radiation Oncologist. It was a non event!. As usual, he had little more to say than Mmm, Mmm.. I pray that he will learn from this experience. The waiting room was filled with patients, many appearing to be dreadfully ill and yet living in hope that their treatment will give them another opportunity to live their life to the full.

Next stop was to spend time with the most amazing, compassionate Wound Care Nurse who managed to have me laughing, and crying at the same time. She explained how radiation either allows, or causes this to happen. She also said that she sees it far too often. Having given me lots of information, along with dressings to try, she applied a lovely Mepilex Lite, soft Silicone dressing which she said would last for several days.

We arrived home, dressing intact, and yet I could feel the itchiness of the skin below. After some time, unable to stand the discomfort any more, I went to the mirror and removed the dressing. The sight of the wound disgusted me; having had it covered for some time it was repulsive! I simply sobbed uncontrollably.

Although my state of mind was not good I choose that particular time to check the cost of the dressings.Tess had recommended a wholesale site. One of her favourites, a silver Silicone costs $285 for 5 dressings. Oh boy! Will this ever end? Over the years, the costs associated with cancer, and its treatment, have been astronomical.

Tomorrow I have an appointment with 'Dr Amazing' who will give me information on the potential risks and benefits of chemotherapy. Everything in me says the risks begin with the insertion of the port given the breakdown in my skin's integrity. As my body continues to fight this 'monster' it leaves little in the way of nutrients to keep me strong and healthy.

I still believe there is a way to 'beat' this disease. It is up to me to find 'it.'

Once again, I reflect on the isolation of life at the farm. Although I do have financial security, and a very loyal 'best friend' who loves me and cares for me, I am wondering if it is sufficient. Two of my children live in the state of Victoria. My youngest son was born and died in the same state. I intend to use the Funeral Company that employs my eldest son. Apparently I am entitled to a 'good deal' with huge discounts. It all makes sense! Is that my heart whispering to me that it is time to come home? 

'Let your heart be your compass, your
mind your map, your soul your guide...
and you will never get lost'
-Unknown.

Is This Radiation Necrosis?

Confronting!

Painful

'Feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear, instead of being bad news, are actually very clear moments that teach us where it is that we're holding back. They teach us to perk up and lean in when we feel we'd rather collapse and back away. They're like messengers that show us, with terrifying clarity, exactly where we're stuck. This very moment is the perfect teacher, and, lucky for us, it's with us wherever we are'

-Pema Chodron

The past 10 days have certainly kept me out of mischief with appointments and tests taking up any spare time, as well as keeping me away from the keyboard. 'Dr Amazing' continues to 'amaze.'

Who would have believed that, in the Public System, I would see my Oncologist, Physiotherapist and have PET Scan within 4 working days? Truly Amazing! On the fifth day I had my first phone call regarding the results.

Dr Andre has kept me well informed with phone calls each day, including updates. When he called me Wednesday he had just received the written report on the PET Scan. He was actually in Taree, which is probably 3 hours travel from the hospital at which he consults. He opened the conversation by asking if I had time for him to read the report to me. How cute is that? On listening to the report, I felt deflated and let down, wondering if this clavicular lesion is indeed recurrence of my original breast cancer or radiation necrosis as suggested by one of the doctors at the Mater Hospital at the time of my PET Scan.

I have chosen to go through my medical files over the past few days and, interestingly, I find that the lesion pictured above above is the very one that appeared within one month of completing a heavy dose of radiation. The MRI at that time had shown 'appearances consistent with amorphous infiltration of the right thoracic outlet involving muscles, brachial plexus and vascular encasement and axillary lymphadenopathy.'

While 'Dr Amazing' is concerned at what appears to be spread to several new areas, I now find it has been there, according to test results, in tests requested by my radiation oncologist. I will now be asking Dr Andrea to review all copies of the reports and reassess my situation. Taking a wild guess, I would say that, had my radiation oncologist referred me back to a medical oncologist, my current circumstances may well be different.. I was certainly disadvantaged, I would say, by the fact that my medical oncologist [ married to my radiation oncologist] has been off on maternity leave for over twelve months. Of course, this had to happen to me during that time.

According to mythology 'It's not over till the fat lady sings' and I have not yet heard her sing. Haha..

In the meantime, Cheryl is consoling herself with copious amounts of coffee, cookies and chocolate.



'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.