New Territory. Again!

'Life is uncharted territory. It reveals its story one moment at a time.'

- Leo F Buscaglia

Once again we have moved into uncharted territory with swelling of the right arm and upper body. The shortness of breath, and inability to pass urine, became a huge concern. Monday morning of last week when the Community nurse arrived to help with shower and dressing change, she indicated her concern, deciding to make a phone call to the palliative care team once the dressings were firmly in place. I felt relieved, due to my confidence in their ability to assess the situation and their wisdom in making appropriate decisions. Before the Community Nurse departed she used a portable ultrasound to check the bladder confirming it was not the culprit. No problems there it seemed. Back to the drawing board!

The Palliative Care nurse undertook a thorough examination before telephoning the Palliative Care doctor. In the meantime, I received a call from the co-ordinater at the Mater hospital. We discussed the current crisis, she took notes relaying the information to 'Dr Amazing' who indicated he would probably like to see me admitted to the hospital for observation and further assessment. Radiation was mentioned, although given my previous experience, it made me shudder. That was certainly not my preferred choice!

Given that 'Dr Amazing' is away this week, and knowing that I am so reliant on Haydn for personal care, including dressing changes, the Palliative Care doctor decided to try an 8mg injection of Dexmethsone immediately with 4mg tablets taken daily, in the hope it would reduce swelling to the area. The hope is that, with swelling reduced, I will breathe a little easier and feel more comfortable which obviously means passing urine regularly.

It is now one week later and I have been on the steroid [Dexmethsone] for almost a week. There has been some easing of symptoms. This feels like a difficult journey to undertake! It does appear that this dreadful disease which now appears to be a fungating tumour is spreading quickly, and aggressively, across the chest wall, causing swelling of glands and vessels. Not a pleasant sight or thought! My right arm is so swollen it is hard to believe the skin does not burst. The arm and hand are covered in tiny bubbles and we can only wonder what is in store? There are absolutely no clothes in my wardrobe that fit me and leaving the house has become somewhat distressing. This is the most incredible journey. I have discussed with Palliative Care my wish to be given whatever is necessary to ease my pain and ensure my comfort as much as possible.                                                                                      

'We seem to gain wisdom more readily through our failures than through our successes. We always think of failure as the antithesis of success, but it isn't. Success often lies just the other side of failure.'

- Leo F Buscaglia

Thank You for Holding my Hand

'When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.'

- Henri Nouwen

I have chosen this quote simply because it expresses how I feel 'at this time.' To those of you who hold my hand on this journey, you have my love and gratitude. I have learnt that it requires sensitivity and caring and is certainly your gift to me. Advice can serve no purpose at this time.

Today began with my monthly doctor's appointment. Yet again I left the Practice giving thanks for the day that Dr S became my Medical Practitioner. I could feel the sadness in him as he went about filling in forms that will allow free access to physiotherapy treatments for lymphatic drainage and also a request for ongoing Psycho Oncology services with Cath.  Dr S's facial expression, when he checked my wound, said it all. My Community Nurse had suggested I ask for his opinion on a nasty vein in the area. Her concern is that it may burst and, being on warfarin, could be frightening for me. Knowing what may happen allows me feel more comfortable. Dr S is now trying to keep me one step ahead of the pain by providing suitable pain medications. He has also suggested fortnightly visits, or more often if necessary.

From there it was off to see my Bowen Therapist who worked solely on lymphatic drainage which she has never done before. She estimated that my arm could contain as much as two to three kilos of extra fluid. I would say that is quite possible. I weighed myself this morning and my weight had 'shot up' three kilos in just over one week. It happened so easily. The treatment has certainly stirred things up; I have had to 'go within,' replacing pain with joy since the treatment. It is interesting to note the way the fluid has moved out of some areas. Instead of living with a swollen, lymphoedema limb, I now have a right arm that has ridges, lumps and dents. I am normally very careful when having manual lymphatic drainage as I did develop cellulitis on one occasion, post treatment. I normally see a therapist at the hospital, however, she has been away for a month and the next available appointment is the end of September; I simply could not wait that long. Dr S has suggested another physiotherapy practice, hence the Referral which will give me five free treatments.

Tomorrow we have another trip to Newcastle; it will allow me to keep my Psycho Oncology appointment. At times like this that I can see real benefits in relocating. Going back to town sounds like a plan. Dr S suggested it today and it is something that definitely deserves consideration. This is one of those times that I would like nothing more than for my daughter in Victoria to be well enough for us to spend lots of time together.

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.

It's Happening Way Too Fast



‘Live with intention. Walk to the edge. Listen hard. Practise wellness. Play with abandon. Laugh. Choose with no regret. Appreciate your friends. Continue to learn. Do what you love. Live as if this is all there is.’ – Mary Anne Radmacher 

It is hard for me to accept how quickly changes are taking place in my body.

 Haydn left Tuesday morning to stay with his 3 grandchildren while his Daughter and Son-in-Law visit Fiji with a view to purchasing property.

I admit to feeling a little nervous about being on my own at the farm, in spite of the fact that it was entirely my decision to 'go it alone.' My lesion had been weeping; it seemed unnecessary to 'expose' my cancer, or myself, to the children. I have services available here; it is simply a matter of making a phone call.

Wednesday afternoon my skin felt like it had the 'creepy crawlies.' Several times I went to the mirror to check for insects on my neck only to find there was nothing. I also felt as if there were maggots crawling beneath the skin's surface, just as I do now. The feeling persisted!

Things appeared to be reasonably normal when I awoke this morning. On going to shower, I noticed my lesion was, once again, weeping. It was from the original sight, which was not expected. Attempting to place shampoo into the palm of my right hand, I found I could not lift my right arm at all. I was shocked! I found myself having to physically lift it with my left hand. The whole thing seemed to have happened overnight.

As the day has gone on I have been aware of the heaviness of my right arm. It is a 'dead' weight! It is more difficult than ever to perform any tasks. Previously, I had been able to raise it unassisted. I am no longer able to do that! I am unsure of what will happen now. Today I have done a lot of screaming and yelling in the belief it is a way of releasing some of the built up tension that has been slowly accumulating since my CT Scan in late January, heralding the beginning of the progress of this 'monster.'.

The Day Before Yesterday

'The more serious the illness, the more important it is for you to fight back, mobilising all your resources, spiritual, emotional, intellectual, physical'

-Norman Cousins

It seems to me that spiritual, emotional and intellectual health are deeply intertwined, having a profound affect on each other. Although I often feel I would give anything not to be experiencing this dreadful disease with all its side effects, I make every effort to look at it in a more positive light, using it for my own spiritual growth. This allows me to better deal with the chronic pain, as well as the limits placed on me by the diminishing use of my right arm/hand, as well as the clavicular lesion that is beginning to cause more problems. It allows me to find more meaning and purpose to my life and to live more fully in the 'now,' This brings me back to my soul and offers spiritual transformation and self realisation.

For reasons unknown, I have now become more conscious that it has taken me a great deal of pain and suffering to virtually 'force' me to grow spiritually and emotionally. In 'The Alchemy of Illness,' Kat Duff teaches us that the Indigenous communities believe that illness is the most reliable means of revelation and knowledge. We are forever changed by the experience of serious illness, learning things we would never have learned otherwise. Enriched Spiritual Health offers us comfort, meaning, harmony and purpose, hope strength and inner peace. Imagine how much easier life would be if we set out to develop these skills. Spiritual growth is about finding meaning and purpose in our life, discovering who we truly are and connecting with inner strength/peace hope and comfort in troubled times.- from information taken from Cynthia Perkins, M. Ed.

Experiencing life completely and consciously, even in the midst of great pain and suffering, is the essence of true spiritual growth. 'Be still and know that I am God' is the mantra that I use during my most difficult times.

The day before yesterday I woke to find my clavicular lesion weeping haemoserous. Although I was scheduled to have a fine needle biopsy on Monday I cancelled the appointment. I immediately phoned my' amazing' new Medical Oncologist, Dr Andre, explaining that I was fearful of the thought of a needle penetrating the wound. I feel there is no guarantee that it will not be the beginning of an open, ulcerating sore. I understand that my decision may, in effect, make it more difficult for him to choose suitable drugs should chemotherapy turn out to be my only option. I felt the procedure carries too many risks for my liking. He is adorable! He simply said that was' perfectly fine' with him. Although the changes were obvious, with the centre becoming opaque on Sunday, changing to blood filled Monday, I simply was not prepared for the weeping to begin Tuesday. My understanding is that this is the beginning of the ulceration, possible fungation of my tumour.

As we had planned to take my near new notebook computer into Maitland to have the data transferred I called in to see the on duty palliative care nurse regarding dressings. Sally said it was out of her area of expertise and nominated the community nurse who called in to see me today. Although I found her to be delightful, I immediately removed the dressing on her departure as I felt the dressing was not large enough and the tape was attached to an area of radiation damage. I find dressings and tape very irritating. Guess it will be up to Haydn to work it out with me. As usual!



Outcome of Today's Appointment

'I cannot believe that the purpose of life is to be 'happy.' I think the purpose of life is to be useful, to be responsible, to be compassionate. It is, above all, to matter and to count, to stand for something, to have made some difference that you lived at all.'

-Leo C Rosten

Today I saw my 'amazing' oncologist who, once again, has shown himself to be compassionate and caring. CT Scan results show my clavicular lesion having gone from 2.5cm (.098 inches) to 19cm (7.48 inches) in 4 months. Not good!

The recommendation is that I have a Core Biopsy on Monday and then speak to my oncologist. During the consultation Dr Van asked a fellow specialist from the Radiology department if further radiation would be an effective; he felt radiation would be 'fast acting.' She said that it could be done, however, the lesion, which is becoming more like a 'wound' each day would most certainly open up. The probability is that I would be left with an ulcerating hole. Dr Van then phoned my regular Radiation Oncologist (Dr Gupta) to discuss the situation. He pointed out my concerns. Those being that this is a secondary tumour caused by the heavy dose radiation given in June 2009. That being the case, the cancer may not be estrogen positive and the reason the Aromatose Inhibitors have had no effect.  An appointment was made to see Dr Gupta on 31 May with a view to further radiation of the area. Chemotherapy is also being considered.

Our trip home gave me the opportunity for contemplative prayer. Having opened the Request for the Core Biopsy I noted that Dr Van had not specified that it is to be done under Ultrasound. Already with increased pain and inflammation in the area, as well as the hardness of the lesion, which, in my opinion, may make a biopsy difficult and painful I am having second thoughts. Nerve endings are affected and it is possible that a biopsy may cause the lump to weep with no guarantee that it would heal quickly and without further problems. I also believe that radiating the area again is simply asking for trouble and I feel Dr Gupta will show his reluctance at the time of our next consultation. He knows how I feel! I know I am playing 'Devil's Advocate' however, the situation requires drastic action. My next post will discuss further options.

I sensed that Dr Van was referring to the correlation between the radiation and the tumour when he quietly said he is sorry that this is happening to me. I promptly burst into tears!

Where to from here?