The Cancer for Which There is No Cure and Few Treatment Options

'Start by doing what's necessary;
then do what's possible;
and suddenly you are doing the impossible'

Francis of Assisi

At the time of my breast cancer diagnosis in 2003 there was nothing to photograph.

In December 2005 I underwent surgery to remove this tumour that had begun to grow on the outside of the breast. It appeared to be fungating.

After very successful surgery, and 5 days in hospital, things were looking decidedly better. My chosen surgeon's handiwork was remarkable!

In April 2009, after months of agonising pain, a diagnosis of recurrence in the brachial plexus was made. I underwent 30 sessions of radiotherapy believing that it was the only option available to relieve the pain and treat the cancer.

At no time, either before or during treatment, was I informed that there was an increased risk of secondary cancer.

Haydn refused to take photographs as the therapy continued. The burning and blistering was probably 4 times worse than the pictures show.

I am now living with soft tissue cancer caused, according to my Medical Oncologist, from the high doses of radiation. Hidden away under the lesion is my 'tatoo.' 

We are now measuring and photographing the lesion to keep track of its growth.



In an attempt to further educate myself on the possible outcomes of my 'latest' tumour I have been making an effort to research 'fungating' tumours. My first attempt left me feeling quite distressed. It is important that I take one step at a time, and do not get ahead of myself, which is easily done. I did have a discussion with one of the Palliative Care nurses, however, although well intended, the possible outcomes are quite frightening.

It seems my latest tumour is a fungating tumour and, although not normally fatal, complications can be. I am hoping that through blogging I will learn more about possible treatments and outcomes. I understand these tumours can be very confronting as they are so unsightly. The stench is unbelievable! The risk of morbidity is high! Overall not something to look forward to!

Although I am jumping ahead slightly, I am looking at both Manuka Honey and Medical Maggots as possible treatment options for the wound. I think it will be up to me to find the best treatment options in an all out effort to live as well as I am able, for as long as I am able.

May God bless you for sharing the journey.

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.

X Marks the Spot

'The struggle of life is one of our greatest blessings. It makes us patient, sensitive, and 'Godlike.' It teaches us that although the world is full of suffering, it is also full of the overcoming of it.'

Helen Keller

As mentioned in my previous post, research has me believing that my current cancer crisis is a result of radiation treatment that was, not only ineffective, but damaging. The lesion growing on the clavicle is actually at the site of the radiation tattoo given prior to my treatment. It was intended to be used as a guide, allowing the rays to be directed accurately. With this 'monster'  growing on my clavicle, it is obvious that the 'tattoo' is almost directly below it and only millimetres away. Too close for there not to be some relationship between the two.

From what I can make out, it is possible that the cancer cells were damaged with treatment rather than killed. At no time was I told that secondary cancer was a possible [probable] side effect. I now ask myself why I did not undertake more of my own research; as I  would normally have done ? In reality, I had been in severe pain for months and felt so relieved to actually be given the diagnosis of Breast Cancer recurrence in the Brachial Plexus that it was exciting for me to learn that it would 'cure' my pain, thus reducing my need for Opiates. I believed the Radiation Oncologist when he told me it was my only option. He offered me Hope!

Apparently, when the cells are damaged they become radical cells causing the body to produce growth hormones in an effort to heal. Instead of having a slow growing lesion I now have a cancer behaving aggressively. Each day I scrutinise the area to determine if there is an increase in size. It is currently about 8cm.

Cancer of the soft tissue is not normally fatal. What I do not know is how I am supposed to overcome the pain and suffering that is beginning to rule my life again. I refuse to increase my Oxycontin dosage, after all, getting off of the opiates was the reason I agreed to undertake Radiation Therapy in June 2009.

I spoke to a Biochemist friend and I believed him when he told me that he had scheduled a conference call with three other Health Care Professionals for 11am Wednesday morning. I was to call him Wednesday afternoon. Unfortunately, when I made the call he abruptly said that HE TOLD ME he would call me Thursday. I felt disappointed! I mentioned it to Haydn who, fortunately, had overheard the original conversation. The arrangement was that I WAS TO RING Wednesday afternoon. I have heard nothing since and my pride will not allow me to call him again as he appeared to give me the 'short shift' on the last call.

Guess that leaves me on my own for the time being as I wait for for another door to open.



My Breast Cancer Recurrence

Although not a particularly clear picture, it does give some idea of the recurrence of my breast cancer in the soft tissue surrounding the clavicle.

'Medicine sometimes snatches away health, sometimes gives it.'

Ovid Quote [Ancient Roman classical Poet and Author of Metamorphoses, 43BC-17]

Although this entry is about the reason for my absence on these pages, it is also a platform for me to give thanks to those that have taken the time to contact me voicing concern at my absence. I am amazed that so many have emailed me personally, enquiring after my well being. I am indebted to you for the gift of your friendship.  Please let me say that you have become more like 'family' than my own.

To be perfectly honest, I am not really sure why it has taken me so long to organise myself to do what I love most; that is to blog. We did manage to do a road trip to Victoria for which I am very grateful. I succeeded in spending time with each of my three children and their families. On our return, I decided to act on my concerns, making an urgent appointment to see my doctor. He agreed that immediate action was necessary. The lesion on my clavicle, growing rapidly and causing the area surrounding it to become very inflamed, required treatment.

My appointment with my Radiation Oncologist did not go particularly well. I asked him if what I was looking at could have been caused by the radiation given to treat my cancer. He avoided my eyes and denied that was the reason, although his silence told me all I needed to know.

I then saw my Medical Oncologist who, once again, proved himself to be 'my kind' of doctor. He explained that what he was looking at appeared to be breast cancer recurrence in the soft tissue. He said it is not uncommon, and, although it is not usually fatal, complications can kill. Chemotherapy is not given routinely as it is not effective. Dr Van has requested another CT scan prior to seeing him on 19 May. I must admit to being slightly concerned about radiation given the number of scans undertaken over the past 5 years. My last one was in January.

Tonight I decided to seek information on possible cause and treatment of cancer recurrence in the soft tissue. I was not surprised to find that on one of the reliable Cancer Council websites, radiation given to treat breast cancer has shown to be a possible cause of recurrence in soft tissue. Naturally, the risks are greater the higher the doses of radiation given, and I was given what was considered to be the highest [safe] dose.

Where to from here? I have no idea really...

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!

This Week I Learned

'A true friend knows your weaknesses but shows you your strength; feels your fears but fortifies your faith; sees your anxieties but frees your spirit; recognises your disabilities but emphasises your possibilities' - William Arthur Ward

It has been some time since we have spent a day at home; I have missed being online. Haydn is determined to purchase a motor vehicle to replace the Mitsubishi Pajero 4WD as quickly as possible. He is very aware that not having a second vehicle adds to my feelings of isolation. The plan to sell the Pajero in order to free up some cash was not well thought through; as retirees our expenses exceed our income. Thankfully, we receive a regular income from the complex containing 5 industrial sheds. There is also a superannuation fund that we endeavour not to touch. It is possible to spend the income should it be necessary. Haydn is mindful of the cost of health care in this country; there will always be money put aside should we need it. We plan to use some of the money from the sale of the vehicle for holidays. In the 15 years we have been together, we have had one week away, apart from a wonderful honeymoon in Tasmania in 1996. No! We are definitely not living the 'high' life. Quite simply, farming 67 hectares does not produce income. Haydn has worked and saved all his life. The fruits of his labour are obvious when you drive onto the farm. He is doing what he loves. I am thrilled to see him have this opportunity.


The Nissan Maxima, as winner of Wheels Car of the Year for the past two years, caught Haydn's eye; we have now made the discovery there are very few second-hand vehicles available. We have been 'on the go' and online for over a month. Finding low kilometres, with full service history, is almost impossibility! Fleet vehicles are' hit and miss' when it comes to service. Haydn is of the 'old' school and changes the oil every 5,000 kilometres. As a result of this we have travelled to Sydney twice in the past week. Along with other activities, including looking at every car lot in Newcastle/Lake Macquarie, it seems to have caught up with me. As a result, I decided to take a 'raincheck' on lunch with my Breast Cancer Support Group today. I spent a leisurely day at home which included time for meditation. It was all about 'me!'


At last! I am getting to the thought behind today's post! Yesterday I learned that IT IS possible to make a huge contribution with an almost useless right hand. We called into a shopping centre on the Central Coast for lunch and some groceries. As I was paying for my things I observed Haydn who stood transfixed, eyes on the check-out operator, who managed to 'swing' a three litre bottle of milk, a  six pack of yogurt and all other groceries into the plastic bag with her left hand. She had somehow managed to open the bag with an almost useless right hand. I watched, inspired and fascinated, determined to come home and do better myself. In fact it is my intention to call the store in order to see if it is possible to speak personally to this young woman. I would like to know if she is naturally left handed or has she developed these skills in order to 'survive' in this, sometimes, tough world?  She was amazing!

Your Heavenly Body

'The most beautiful system [The Universe] could only proceed from the dominion of an intelligent and powerful Being' - Isaac Newton

Ever wonder what your heavenly body will be like? The Bible gives us three answers to the questions. 'How are the dead raised? With what kind of body will they come?' First, it speaks of anatomy:'...Men have one kind of flesh, animals have another, birds another, fish another.' (1 Corinthians 15:35 NIV)

Just as fish are designed to handle the pressures of the ocean and birds are designed to fly, your heavenly body will be custom-made for eternity. (Imagine travelling not merely at the speed of light, but the speed of thought!) Next it speaks of astronomy: The sun has one kind of splendour, the moon another and the stars another; star differs from star in splendour. So will it be with the resurrection of the dead...' (1 Corinthians 15:41 NIV) There will be degrees of honour and differences of reward when we get to Heaven. Your service now  is what determines your status then 'God' will give to each person according to what he has done.' (Romans 2:6 NIV) Finally, it speaks of agriculture....'it is sown in weakness, it is raised in power.' (1Corinthians 15:43 NIV) It's said the old Saxon word for cemetery means 'God's acre.' How wonderful; Christians don't get buried, they get planted!

There's a Bulletin Board in the Mayo Clinic which reads:
'Cancer is limited: it cannot cripple love, it cannot shatter hope, it cannot erode faith, it cannot eat away peace, it cannot destroy confidence, it cannot kill friendship, it cannot shut out memories, it cannot silence courage, it cannot invade the soul, it cannot reduce eternal life, it cannot quench the spirit and it cannot lesson the power of the resurrection.

This information, given to me by a friend, was taken from: http://www.thewordfortoday.com.au/

Is it a 'Cause for Concern?'

The NSW coal mining industry has enjoyed a period of extraordinary growth over the past few years 

'A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses.'
Hippocrates

Coal prices have risen on the back of increased demand from China. Higher prices have stimulated investment in the NSW coal industry. There have been a number of new mining developments, or major expansions, to existing mines. Several of these are in close proximity in the Hunter Valley. Is this then a cause for concern?

I do not believe that my breast cancer has anything to do with  the mining industry. I do believe that there are potential health risks associated with mining. I will go so far as to say though that there does appear to be a cancer 'cluster' right here in this area with its magnificent views. Looking across the Allyn Valley, at times, we see the haze from the mines. Our home is not in close proximity to any of the homes on the six adjoining properties. Being a rural area, we live on 67 hectares, or almost 200 acres for those not familiar with the metric system. Of the six adjoining properties, at least one person in each of five of them has, or has had, cancer. Last year we attended funeral services for two of them. Although Haydn has owned the land for 20 years, we have been residents for less than three years

Apart from information gleaned from local papers, I have done no research into potential health risks associated with mining. I did find it interesting that the couple that looked at the property last weekend stated emphatically that, although the husband works in the mines, he will not live anywhere near them. After their first inspection, they have said they can see themselves living here.

My relationship with Haydn is not an issue; fortunately the lines of communication have been opened. There has been a huge shift! At 64 years of age, he is prepared to sell acreage that he has lovingly tended for 20 years in order to give me the opportunity to return to the city. This would enable me to spend time with friends and seek treatment as necessary. Is it the right thing to do at this stage? The more interest in the farm the people show, the higher my stress levels. I have shed tears of frustration this past week knowing that Haydn was put in the same position many years ago when his first wife became ill. I do not believe it is right for him to go through it again!

A huge 'Thank You' for your response to my previous post and your compliments on our home and view.

Our First Inspection



At the time the house was built it was going to be our 'dream' home.



The kitchen is a 'dream' in which to work.

The ensuite has windows facing both north and south making it 'perfect' for a morning bath

The view and verandah; perfect for Al Fresco dining

 Crossing the cattle grid and heading home

The view 365 days of the year

Beauty surrounds us

Haydn loves his cattle which are Red Angus or Red Angus/Devon cross

'Contemplation often makes life miserable.

We should act more, think less and stop watching ourselves live.'

-Chamfort ~French playwright 1741 to 1794

Since retiring, and having to face the reality of the recurrence of my breast cancer, it seems I have been wearing myself out thinking. Yes! There have been many challenges but none that I have not been given the strength to endure. At last it has begun to 'sink' in that my fatigue is due, in part, to overthinking! I have made the decision that, in order to become more proactive, it is necessary to open the lines of communication between Haydn and myself. After 15+ years you would have thought that was a lesson learnt.

As mentioned in a previous post, I hadve been questioning, of late, my relationship with Haydn. We have come a long way in a short time since doing more talking! The past two weeks have seen many 'issues' resolved. I am so very grateful to 'The King' (his 'nickname' in my previous blog) for being 'open' to ideas and ready to make changes. I have suggested there may be things that I do that get under his skin. If so, he needs to bring them out into the open.

The King coasts along which, in reality, is 'cool.' I now realise that he offers me another type of 'unconditional' love. We enjoy a love that endures in spite of unfavourable circumstances. We spoke yesterday of the many relationships that fail when the going gets tough. In our case, we simply  get going and just keep on keeping on. Admittedly, there are certain behaviours that cause me some angst, however, that is not who Haydn is. I have learnt from him!

Now back to the reason for the post. At the end of September the farm was listed for sale. As a result, it is no longer under contract; it was a 90 day contract. There was not one inspection until today, when that changed. We had our first inspection! The verdict - it is hard not to like!!! We wait, in anticipation, for a second inspection.

We have learnt in life that 'things work out best for people who make the best of the way things work out.' - Author Unknown

What does it Mean?

'Half of what I say is meaningless; but I say it so that the other half may reach you.'

- Kahlil Gibran

Somehow I cannot help but feel that darkness has surrounded me for longer than I would like. I have taken a step forward in search of the love, light and laughter that was once my very being. This will be a brief post; to keep Indigo Dreaming alive.

Tomorrow I see my doctor and will be asking him about my test results. I do not wish to feel overly excited, however, I look forward in anticipation to the possibility that he may be able to make a phone call on my behalf. It would be wonderful to learn the outcome of the tests prior to 24 February.

It seems I have not become totally absorbed with my own problems; I am in receipt of an email that has humbled me. I consider the outcome a Gift from God. Shortly after Jeremy's accident I was fortunate to learn of Memorial web sites. I felt that setting one up would give me an interest and also provide the perfect opportunity to keep my son's memory alive. While looking at other sites I realised graphics were being done to enhance the sites; I had no idea how to go about making them! I became aware that as my photos were not digital, I had to work out how to scan them to give me images to work with. It is amazing to see just what can be achieved by a very determined Mother mourning the loss of a much loved child. Jezz would be proud of me!It all seems so long ago! I became involved with a group called Angel Families Online where I formed the most amazing friendships and received all the help I needed. In the process, I learned to do simple graphics while finding others who willingly gave up their time to assist me. The result can be seen here:

http://jeremy-radford.memory-of.com/About.aspx

Many Memory-of friends are also FaceBook friends. I feel sure the writer of the following email will not mind that I have chosen to share it with you. She writes, (in part only:)



 'I always went to your son's page because he was a so special. God sent him to you and he was your 'miracle' baby. I have seen the pics of the whole breast procedure on fb and it brought tears to my eyes.  I have a mass on my left breast. I ignored going to specialist until seeing this. You have taught me a lesson.'

I have chosen to share just a small portion of this email, rather than keep it private. It is my intention for readers to seek counsel thus providing a plan of action and appropriate treatment. It is important to understand that early intervention usually provides better outcomes. 'There is nothing to fear but fear itself.'

P.S. My doctor proved himself to be worth his weight in gold today. A quick phone call and my results were on his computer screen ready for viewing. My bone scan does not show any bony metastases which is good news for me.  CT Scan not as clear. There appears to be a 6mm node with poorly defined margins in the right neck. There is also an enlarging nodule in the right pectoralis now measuring 18mm. There is also a rounded 12mm nodule at the medial edge of the scar which has changed. Suspicious change in the area of the right inferior lung which may reflect further benign change or small new mass. Whew!!!!!

So my dear friends, having decided that my doctor's room will, in future, be used as a crying room I can start anytime. This is not necessarily news I wanted to hear, however, it is not something I will unduly concern myself with until I have the opportunity to discuss my condition with my oncologist. At the end of the day, I am still waiting for my appointment on 24 February. And. I did survive January 2011!

My love and gratitude to all. Chez xo