Where to From Here?

'A bodily disease which we look upon as whole and entire in itself, may, after all, be but a symptom of some ailment in the spiritual past.'

- Nathaniel Hawthorn

It has been some time since my last Post, possibly because life seems to have been a succession of appointments and tests. It is now time to contemplate my options, although they may appear to be limited.

This 'little beauty' has grown from less than 3cm to approximately 20cm since the end of January. How much longer will it continue to behave in this way? No one knows!

My 'amazing' oncologist has recommended a course of chemotherapy, although he admits it may have little or no effect. The recommendation is for an infusion of Liposomal Doxorubicin by drip into the vein. This would take place every 28 days.

I have been told that not every one gets all of the potential side effects and yet my concern is always the same. If anyone is going to get them, it will be me. There are two issues that perturb me. One is the possible risk of localised reaction at the sight. Given that I have very little use of my right arm/hand, should the reaction in the left be severe, it leaves me in a bind. The same applies for the possible risk of peripheral neuropathy, including hand and foot syndrome. Given that my skin reaction to previous radiation was severe, I am at also at an increased risk for radiation recall. Do I really need to go through that again?

Is there a suitable treatment for recurring, metastatic breast disease that does not have a list a mile long of potentially life threatening risks and side effects?

At this time, I am contemplating saying 'NO' to chemo and taking a chance on moving away from the farm, and the isolation, to put myself into a position somehow that will allow me to spend time in the company of people and also to be of service.

More on that option later!



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...

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

Who Am I?

If I am not my Breast Cancer and I am not my Grief then 'Who am I?'

Why is is that I am feeling that I have little in my life other than my cancer and my grief. Having mentioned the word 'coincidence' several times lately I have come to realise there is a 'pattern' to my life of late. It is not just a coincidence that I am in this place. It probably began at the time of my marriage to Haydn. In 1996 we returned from our honeymoon. On the way home I began to question  myself, asking if I had made a mistake?  Haydn and I were 'soul mates' during our courtship. Or so it seemed!  Haydn's daughter Claire now says I was 'duped.' The person that courted me was not the father she knew or the man I married. Anyway, that aside, I suspect I suffered from depression in the early days and was very grateful that I found the strength to leave. I felt I had reclaimed my life.

My Breast Cancer diagnosis in March 2003 had little effect on my day to day activities and it was enough for Haydn and I to resume our life together. I had a melanoma removed in 1996 and considered myself blessed to have been referred to a surgeon that believed anything resembling a melanoma should be removed fully rather than biopsied. The world was my oyster. I was never going to see my son an orphan. I felt well and optimistic.

At the time of Jeremy's accident in November 2006 Claire was preparing to depart for New York. Haydn sold the family home as it was our intention to retire in June 2007 and move to a new home at the farm. It was to be a 'new beginning' for us. Haydn's business partner put a stop to the Company trading account that June, being the end of our Financial Year. We ended up preparing for a court battle, as well as living in a site shed at the factory for as long as it took to wind things up. That turned out to be 18 months. I suspect the 'rot' began to sink in about that time. Friends that I had known for years appeared not to be able to handle my loss. I began to withdraw and preferred to be alone at the shopping centres where I could simply drink coffee and watch the world go by. There were less tears that way!

I realise that life with Haydn can be difficult due to his antisocial behaviour. He can be intolerant! He has more than enough good points to compensate. That was not a problem when I was well and we lived in town. I simply lived my own life allowing him to do the same. I loved my role in the Charismatic Renewal as well as my study to become a team member at the Newcastle Healing Rooms. It pleased me to have the opportunity to undertake the preparation to be a Prayer Counsellor. As long as I had a vehicle and a telephone I felt free! And then, of course, I was preparing to  become a Funeral Celebrant.

'Is freedom a state of mind?' I am confused! I am lost! Today, I received a note from Brenda which touched me so deeply that I sat began to sob.

'If only I could understand the reason for my crying. If only I could stop this fear of dreaming that I'm dying' - Laura Palmer

Several times I have skirted around the situation with life as it is today. Yesterday I commented to Haydn that I do not like the person I have become. I even admitted to feeling resentment towards him, meaning that I see him living his dream while I feel 'trapped.' When he told me that his late wife Leigh had said the same thing warning bells rang in my ears.

For more than 2 years I have lived with the pain and uncertainty of life. That is doable! Today I realised that the love in my heart has been replaced by fear. Living with the uncertainty of my condition is bearable. I have come to the conclusion that I  am not ready to die. This has come as a complete shock. I had believed that the date was written in the Book of Life. My role in life no more than simply 'being.' It may be nothing more than to be of service to others that will give me a feeling of contentment:

'Health is the greatest possession. Contentment is the greatest treasure. Confidence is the greatest friend. Non-being is the greatest joy'....Lao Tzu

Since beginning this blog I have used my writing as a tool to keep me strong. And positive! Although it may seem that all is well in my little world, in reality I am afraid.  I have recently used ideas from Brenda's Blog to resurrect tools acquired over many years to reclaim my life in the belief that I will return to a healthy state of mind allowing the fear in my heart to be replaced with love once more. For those interested in what Brenda had to say, the words that allowed the flood gates to open -

'Cheryl My Darling, You haven't given up on any front!! You've had so much loss to deal with plus your own cancer. I think you've done an exceptional job at surviving mentally, physically and emotionally. Yes, there are aspects of your life you wish were different, but you're taking back your power and making changes that will benefit you and Haydn. I'm so proud of you for putting more of an emphasis on yourself. The hypnosis tapes, meditating, prayer, will all help you get centered so you can move forward and make better decisions from a place of calm. Bravo! You don't have to fix everything, today, but embrace those small changes and tweak them in for the maximum benefit. I'm proud of you! You've got grit, girl! XOXOXO, Brenda'

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....

Playing Mind Games with Myself

These are tough times for me.

I was full of optimism with the move to 67 hectares (almost 200 acres) of bushland in the Hunter Valley in July 2008. The right to the 'good life' had been earned. Or so I thought.

Retirement is what dreams are made of. At last! The opportunity to have a vegie patch and do some of that travelling that had always been just out of reach. Why was it that my health began spiralling downward at that time?

It took 12 months of incredible pain, and many hard earned dollars, to determine the recurrence of the breast cancer in the brachial plexus. The only treatment offered was a 'super size' dose of radiation that left me feeling downright fatigued and yet, optimistic that I would have years to undertake the many tasks that had been put on hold following the death of my beloved Jeremy Jon just days after his 24th birthday in November 2006.

What happened? Why did the cancer eat into the nerves and muscles effecting the use of my dominant right arm/hand? For reasons that I do not fully understand, driving became more of a challenge. Quite possibly, it was the fatigue that plagued me, leaving me just too tired to keep my eyes open. I became less self reliant and more dependent on Haydn to act as my driver and my carer.

My hair had always been my crowning glory. I could go to the store in my house clothes, providing my hair was freshly shampooed and dried. I was secure in the knowledge that people had, for years, commented on my handwriting. The joy of sending greeting cards fast disappeared as I struggled to learn to write with my left hand. Not only had I lost the ability to take care of myself I felt like I was losing HOPE. No longer able to touch type, the frustration of becoming a one finger typist annoyed me. Yes! There is voice activated technology and I may well end up becoming more familiar with it, but for now my motivation is simply not there.

Life can be very cruel! I feel sure many of you will testify to that.

The countryside, once a thing of beauty, now has me feeling trapped. I seem to have lost my confidence in so many areas of my life. Unable to prepare a meal, I rely on Haydn to do the food preparation. I then have to bite my tongue when he shows little respect for my request to, PLEASE..chop the vegetables the same size allowing them to cook evenly. Thankfully, my obsessive compulsive disorder is not fully blown. I have not driven for months. Indeed, my days of complete independence may well be a thing of the past.

I sit here wondering just how I am going to get used to the life of isolation at the farm. If indeed, I have to.

My days consist of medications, indeavouring to keep the pain under control. Meditation, in an effort to empty my mind of the useless, damaging chatter. Exercise, to enable me to retain some use of this somewhat useless arm, thus preventing a frozen shoulder. The extraordinary Palliative Care team always a phone call away.

On my 'better' days, I realise that I still have a story to tell; history and information about myself. All the things that my children, and grandchildren, will one day look back on. An opportunity for them to get a sense of the 'real' me.

What do I want for them to see? Definitely not a wimp. Rather, someone with incredible strength and courage. Someone that did no give up just because the going got too tough. Someone that found the strength to dig deep and to use all that friends and acquaintances bring to the table. This is the time to make the most of all the cyber world offers. When I am unable to get to friends, then I will feel secure in the knowledge that they will come to my desktop.

How could I not smile knowing that I am in the PERFECT place....

Group 33 Lunch at the Farm

Saturday last I was delighted to be in the company of 13 members of my Breast Cancer Support Group. Throughout the past 18 months I have missed many of the monthly luncheons due to pain and suffering, including my inability to drive as a result of fatigue from the medications. The women decided it would be worthwhile to hold a 'special' luncheon at the farm.

The girls arranged to meet and travel together. Several of the women live in the Newcastle/Lake Macquarie region while others reside around Maitland, which is closer to the farm. The first 2 cars arrived. I immediately began feeling slightly nervous; I was expecting around 9 and I had 8. They began pulling food out in Esky Cooler boxes. It had all been planned by Pam [Social Secretary] that Haydn would do meats on the Weber Q barbeque and the group were given responsibility for drinks, breads, salads and deserts. Looked like we were feeding an amy. But where would we sit? Would the weather hold to allow us to sit outdoors?

It was planned that it would be a leisure day for me; their way of acknowledging the stresses of the past 18 months.

A few minutes later and I was surrounded by 13 lovely ladies - along with Haydn and myself. I felt slightly distressed when it became painfully obvious that I was no longer able to press the button to activate the shutter on the camera. Fortunately Margaret was a willing party and took lots of lovely pics, although I was too distracted by the great company, food and laughter to remember to get Haydn to take a snap of the group as a whole.

We really did have a delightful day! Plans were put in place for a winter luncheon which would enable us to sit around the combustion fire, burning wood felled on the farm, and split by Haydn for exercise and fitness. Maybe even a walk up the mountain could be arranged .

The travel time home did not appear to phase them as it was 4.45pm before anyone made a move to leave. I was presented with the most magnificent bunch of liliums that I had ever been given although I really felt that it should have been the other way around.

It was a fantastic day and I did not lift a finger. I came into the kitchen to find the dishes done and leftovers in the refrigerator which meant no cooking for at least a couple of meals.

Cheryl on the left with Chris

Lunch is being served

Haydn entertains the girls and talks about life on the farm

WOW! In appreciation. The buds were not yet open so I am enjoying them now....

Staying Strong

Haydn has always been conscious of preparation and funding his own retirement. As Managing Director of his own small Manufacturing Company, in May 2000 he decided to buy an industrial complex containing 4 sheds, thus preparing for his own his own comfortable retirement.

At the time of our retirement - June 2009 - he was given a gift from one of the tenants, 2 very small frangipani trees, which we decided to keep in pots; they were of unknown colour. One of them has just produced its first flower; almost white with pale pink centre.

Friday turned out to be drama filled.

Palliative care arrived mid morning and set up the canula in the abdomen for the Grasby machine. By mid afternoon, I realised that there was redness at the site. A phone enquiry, regarding the stinging and itching, and was told by Chris they would be right out. Better to do it then rather than drive the distance in the middle of the night if there were problems. They departed about 5.30pm.

Around 9pm the alarm began to go off. After waking Haydn to have him unlock the machine ( the lock & key probably insures the safety of the morphine) we determined that it was not the battery. I therefore found myself waiting for a third visit from Palliative Care at 10.23pm Friday night.

This time I had successfully pulled the canula out and it had bent back on itself. No way was this little beauty going to give me any pain relief. Thank goodness for the inbuilt safety features of these machines.

Then, of course, there was no getting me to sleep. Too much hype for a Friday night.

An interesting view of how daggy I looked at that time with the machine hooked up.

And then there is our big fat night time resident frog. I now know why he is huge!

He climbs on our glass French doors later at night and devours the moths and insects that are attracted by the lights inside.

I thoroughlly enjoyed my observations.

Photography not brilliant as I am learning to manage with a greater degree of disability due to the recurrence of the cancer.

Almost impossible to click the shutter with the right hand.

And then...

Then there were all of these beautiful Birthday Cards to help me to celebrate my January birthday.

Haydn asked if my friends thought I was going to die as there seemed to be more cards than usual.

My reply 'We are all born to die.'

It is between me and my Maker but I know I am not ready yet!

Vanessa

At the time of Jeremy's accident I met Vanessa; a delightful young woman. Jeremy thought so too. They had been together the whole weekend prior to his accident.

Each time I went to Bairnsdale I had the opportunity to spend time with Ness. She always made time for a coffee and a catch up.

At the time she wrote the most beautiful verse. Although I have not been able to put it in its original format, the sentiment is too precious not to Post.

JEZZA

Awaken to a message

In my bed I would lay

'Good Morning' gorgeous

Another beautiful day

Are you up and about yet?

What's your plans for today?

When do I get to see you?

Miss you babe, you'd say

Reply to a message

In my bed I would lay

Good morning my sweet

You have just made my day

Can't wait to see you

Only one more day

I miss you too baby

Soon I'm out to play

I'll look forward to it baby

Not the same when you're away

That feeling felt between us

We both thought weird hey!

Surprised by the comfort

Shared as we lay

The old married couple

That had so much to say

To a room filled with music

When hearing was betrayed

Our eyes would do the talking

Just go with it. It's OK

Amazed by me the straight girl

Who loved you in everyway

To me you were like sunshine

Filling my heart with rays

We shared similar thoughts

Neither judging what other may

And appreciated the little things

Like a smile can brighten a day

Then when the night fell

In my bed I would lay

Sweet dreams gorgeous

Tomorrow you will stay

Goodnight my sweet

Sleep well I would say

Look forward to tomorrow

Wish it was today

Awaken to a message

In my bed I did lay

Our tomorrow was here baby

But you'd been taken away

Time once looked forward to

Now filled with dismay

The sunshine I once felt

Had now turned to grey

You come to me while dreaming

And wipe my tears away

You don't have to let go baby

In your heart I will stay

My sweet I say 'Thank You'

How can I ever repay

All you taught and gave me

In such a selfless way

Dance like no ones watching

You showed me that OK

Sing like no one's listening

I'll drive you crazy every day

I will cherish our time forever

The world forgotten as we lay

And my smile will return

As you'd want it that way

Be free sweet angel boy

In the stars you now lay

Forever young, forever beautiful

Taking care of us every day.

Ness (far right) with Megan and Ella (granddaughter)

At the time of the Celebration of Life service for Jeremy I met Vanessa's Mother who simply said that she did not know my son but she was so very grateful to him for giving Vanessa back her life.

Last night I spoke to Vanessa (meaning butterfly) only to find that she has been diagnosed with breast cancer. At just 33 years of age I heard, and felt, the fear of the unknown. She is scheduled to undergo a mastectomy on Wednesday. My prayers and love will be with Vanessa. I smiled when she added that she was glad to have Jezz as her Guardian Angel

Oops! Just could not get the spacing on the verse as I wanted it. No patience this morning! I believe it is worth making the effort to read as it is.