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.

Psycho Oncology Appointment

'Wisdom is to finish the moment, to find the journey's end in every step of the road, to live the greatest number of good hours.'

-Ralph  Waldo Emerson

Recently I met with my Breast Cancer Support Group [Group 33] for lunch. It had been several months since I had joined my friends at the monthly lunches. They found it necessary to summon me! These women are very good at giving me a 'reality check' and deemed it necessary.  It was good to get together! I felt the love; surrounded by people who care, making it good for my soul. It was the perfect opportunity for them to observe my lesion, as well as notice the changes in my manual dexterity. They were shocked!

Vickie, being the outspoken member of the group, with experience in both nursing and palliative care, decided that I needed help. Time for me to see a counsellor! She mentioned the name of a psychologist; fortunately it was one that I had seen previously when she was attached to the chemotherapy and radiotherapy departments at the hospital. A time was set for Wednesday 20 July.

There was much laughter during the 2 hour session; in fact it was freeing. Cath established very quickly that she felt I had a form of Post Traumatic Stress, explaining that it is quite normal, even to be expected, with each new crisis building on pre-existing conditions. I laughingly accused her of putting a label on me!  I felt a tremendous benefit in talking to a counsellor who, although she does not have cancer herself, works daily with patients who do, hence the name 'Psyco Oncology.'

To be perfectly honest, I have no idea what we discussed during our session except that Cath indicated she felt it would be good to have a further session focusing on my feelings in regard to the hospital and possibly radiation damage.  It seems to me that with so many positives coming out of my appointments with my Health Care Professionals at the hospital, it is a shame to allow my feeling towards one young, inexperienced doctor, get in the way of all the good. It is possible that education and youth are no match for experience and wisdom. In my case following the text books has meant ignoring the fact that we are all individuals and there is no 'one size fits all' approach. My understanding is that this will change. It will probably not be in my lifetime, however, things are changing. There are approximately 60% of patients that will benefit from the tried and true research,  leaving a high percentage of the population that need to be treated as individuals. I think I know which group I come into! Hmmm...



Message from Spirit

Nankeen Kestrel courtesy of 
http://en.wikipedia.org/wiki/Nankeen_Kestrel

This morning we woke a little later than usual, due mainly to a previous late night and a cool, damp morning. Life seemed almost perfect as we listened to the rain on the rooftop over the sound of our favourite radio commentator. Just the day to stay in bed! Unfortunately that was not going to happen as I had an appointment with my Psycho-Oncology lady. As usual, Haydn was to wear his driver's cap.

I prepared for the shower and, as I found myself peering through the foggy glass shower screen towards Barrington Tops,  I noticed what I thought was a familiar bird on the railing. Rather than looking outwards, possibly for prey, I noticed it was turned towards me. It appeared to be looking me in the eye. I assumed it was a baby King Parrot; there had been one around over the past couple of days. Thankfully, Haydn chose that time to brush his teeth. We were able to talk about our visitor. I was thrilled when Haydn said he thought it was some sort of falcon. Of course, I sent him running for my spectacles, along with the bird book. He was quick to point out that it was  Nankeen Kestrel (Falco cenchroides.) I could not help but notice that it continued to sit and watch, appearing to make eye contact, which I found most unusual.

Once dried, I  reached for my copy of Animal Dreaming by Scott King, who writes that Aboriginal Legend says that the Kestrel is the protector of the warrior spirit. I can expect to be watched and protected against any further attack. An Ancestor Spirit to some tribes, the hawk/falcon is the bringer of good tidings, healthy change and victory. To have a hawk visit suggests I am to receive a sign or a gift from spirit. My visitor alerts me to watch for signs guiding me to the next phase of life. It reminds me to be vigilant; willing to act quickly. I am reminded that it is OK to ask for messages during prayer and meditation. This is a time that I can ask for, and expect to receive, Spirit's guidance.

'Love and desire are the spirit's wings to great deeds.'

-Johann Wolfgang von Goethe

IRE-Nanoknife

‘To love is to risk not being loved in return. To hope is to risk pain. To try is to risk failure, but risk must be taken because the greatest hazard in life is to risk nothing’ – Author Unknown

I have just come from reading a Post by Nolly Posh (aka Vicki @ http://nollyposh.blogspot.com/2011/07/nanoknife.html on the subject of IRE Nanoknife. Thank you Vicki; this has given me new hope.  Apparently, this treatment, which can be performed on soft tissue cancers, is being utilised at the Alfred Hospital in Melbourne.

That in itself brings back memories. In March 1990 my late husband Raymond was admitted to the Alfred where he was diagnosed with a brain tumour. After more than 7 hours in surgery, his neurologist came out and broke the news. His words! 'This is very serious!' It was! At 48 years of age Ray was paralysed completely down the left side. At that time, we owned and operated, the Lakes Entrance Squash and Fitness Centre. Eldest son Damian was left in charge of the Centre, with help from a special friend Marianne Hocking. Jeremy, who was only 8, was 'off loaded' to an amazing family. The Allen family looked after him as one of their own. It is times like that you feel truly blessed to have such amazing friends.

Unfortunately, at that time it was determined that Ray also had a tumour on the lung. It was necessary for him to undergo intensive rehabilitation before he became a candidate to surgically remove the lesion on the lung. We were transported daily, by ambulance, from the Alfred to the Peter MacCallum Cancer Centre for Ray to undergo radiotherapy. The facilities were 'amazing' (there we go again with THAT word) in that they provided accommodation at all times which enabled me to be with Raymond 24/7. We were truly blessed to have a Cardio Thoracic Registrar on the ward that advised me to take Raymond home two weeks post op. Fortunately, he recognised that Ray was at risk of depression which could possibly have kept him there for an extended period of time. I remember the fear I felt as we left the hospital. Ray was only just out of the wheelchair. I need not have worried. As we drove through the Latrobe Valley, heading for Lakes Entrance, we stopped for coffee. From that moment Ray's condition improved. We were going home, after 18 weeks. The family would be waiting; we would be together again.

This post did not quite go in the direction in which I intended, however, it does give you a little more insight into my 'decision making' process. Either Ray or I have been on the 'cancer' journey since 1978. He lost his battle in 1994. I had a melanoma removed in 1996. With the exception of 2 years, either he or I have had cancer. I don't see,, or hear the fat lady

Tomorrow, I will be ringing my Breast Care co-ordinator to relay this latest information, in the belief that I will be well informed. Better able to make decisions that will do more good than harm. There has to be a way than chemotherapy.

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.