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.

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!



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.



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

I am Being Tested

All human wisdom is summed up in two words ~ wait and hope

- Alexandre Dumas Pere

In spite of my very best intentions, it seems I am to be tested. Having spoken to Dr Van's secretary on Tuesday I was expecting to hear from him either today or tomorrow with my test results.

Today I did receive a phone call from Dr Van's secretary. She advised me that the test results are pending and doctor is going on leave tomorrow.  He has therefore advised me to keep my appointment on 24 February. I guess that leaves me little else but to wait and hope. I am grateful for the phone call although it did not stop me from sobbing uncontrollably at the news.

In the meantime, I am looking at my left arm which now has a large pocket of fluid at the elbow as a result of the cannula being inserted for the contrast and isotopes. I have no idea what that means but I do know that I feel some concern at anything that has the potential to cause me problems with the only arm that works. It is bad enough that I have severe carpal tunnel symptoms as a result of using my left hand on the keypad of the laptop. Something I can only change when I have my new laptop set up with Dragon, speech recognition software.

Speaking of which, I had been advised by the retail store from which I purchased my new notebook computer in December that the cost of the data transfer would be $140. Given that my thumb is continually numb from RSI symptoms I phoned the store this morning to enquire as to the length of time it would take to do the transfer. I was informed it could be done today. I quickly showered and headed in only to be told on arrival that, as I had not done my own set-up, there would be an additional cost of $99 and it would not be ready until Monday (today is Thursday.)

Haydn made it clear that it was his belief I would not be able to live without the Internet for four days and he would not be able to live with me. Needless to say the computer came home with me.

I remain hopeful! Any suggestions on how to wait patiently?  

11.1.11 Celebrating Life

The day which we fear as our last is but the birthday of eternity - Seneca, Roman philosopher

 Celebrating my birthday on 11.1.11 was quite special for me. Not for any reason other than there have been times I doubted I would make it.

This beautiful Birthday Post Card was organised as a surprise. My special friend Kaz, a resident of Maine, posted this on my Facebook wall. I was overcome with emotion! It is definitely something to be printed onto canvas for framing. Thanks Kaz for this 'Memory Moment' which I will treasure all of my days

As my regular readers are aware there is a 'family history' of birth/death in the same month. Always the question to be asked 'Is this the year?'

Interestingly enough, I saw my doctor on my birthday. The discussion centered around the outcome of last week's appointment with my 'new' oncologist. Dr Sales said he felt there had to be 'just cause' for extensive testing given my situation. It was not simply about furthering the education of the medical profession. As I was unsure of what he meant, I asked him to 'please explain?' He made it clear that, given the tests were likely to show the reason for growth and increasing pain on and around the clavicle, as well as hard nodules below, there had to be treatment options available. The answer is a definite 'Yes' although my thoughts, at this time, are that 'quality' of life will always take  precedence over 'duration' of life.

As with most things, that is easy to say now. Time will tell! After all,Damian and Tyneal will present me with the gift of grandchild number 10 in June.

Oh No! Could it be Another Melanoma?

The week has not started well with this wretched fatigue being an ongoing problem. My morning Tai Chi class, normally uplifting, was tiring for some reason so I found my way to the sofa as soon as I arrived home. This afternoon, after checking the garden and spreading some fertiliser in anticipation of the rain, the fatigue got the better of me and I curled up on the lounge. There was no  sense of feeling refreshed when I surfaced. Not a good sign!

Tomorrow I have an appointment with my regular General Practitioner, Doctor Milton Sales. The date is 16 November, which is also the birth date of my 'Spirit Child' Jeremy. The appointment will be slightly different to my 'normal' appointments which have come to be about prescriptions for medications and blood tests for INR levels. Being  on Warfarin for the blood clot means regular testing as many have discovered.

I have not had results for the Doppler ultrasound on the blood clot so that will be a priority considering the sonographer did not appear able to find either veins or clots! I now have a rash that is beginning to spread across the eyelid of my left eye. Having a problem on the left side is certainly different! Until now, everything that does go wrong is on the right side of my body. Yesterday, with the sun shining through the en suite windows giving better light, I checked the rash on my eye. That done I looked at the area on my jaw bone to see if the rash had spread further; there was an itchy spot which was annoying me. I was amazed to find a spot that does resemble something like a melanoma. I self diagnosed my own in 1996 having spent many years in melanoma clinics with my late husband. His Death Certificate gives cause of death as melanoma. As you can imagine, I am a little shocked. Actually, that is an understatement!! You would know from my writing that I believe it is not what is given to us that is important, rather what we do with what is given to us that teaches.... I really feel like I could do with a break about now. Then again, it may not be as bad as I think.

There has not been a lot of proof reading for this post as I simply wished to put my thoughts on paper before going to bed for m,ore sleep.

'Time does not always HEAL: it just breathes and swallows memories like the seasons change – sending showers; beating flowers into the mud. And nothing is forever in this place. Nothing but the way my heart fits in your hands; the held breath of HOPE'…author unknown

Time to 'Do it Your Way' Jezz

Although there was much to be done, the arrangements were being left to my inestimable family. Damian (always the 'rock' of the family) and Tyneal had the experience. Megan, in charge of music, was determined to make it a celebration to be remembered, just as Jezz would have wanted. When she suggested the venue should accommodate between 200 to 300 people, I questioned her. After all, Jeremy had only returned to live in Victoria more than 12 months after my Breast Ca diagnosis in 2003. Megs said 'Ma, have you forgotten what it is like to have Jezz around?' Even writing this entry brings with it a feeling of contentment; being with Jezz allowed me to be the person I most wanted to be. I began to wonder what it was like for others mourning their loss. His appeal had nothing to do with the way he looked, or the clothes he wore. It was simply his presence and, of course, the smile.

Damian approached Tobin Bros, appealing to them to allow him to collect Jeremy's body from Bairnsdale. He received an emphatic 'NO!' Definitely not! They did agree to allow management to make the decision and, given Damian's work record, as well as the circumstances, it was decided that both Damian and Tyneal would make the journey. I think I actually said somewhere that Tyneal was already undergoing training at the Victorian Police Academy. That is not right as they made the journey together. Thankfully, only a couple of years before, Damian had earned the nomination of 'Employee of the Year' and had won the award. He was held in high regard. Knowing that the accident that took his brother's life had been horrific, he was concerned about what it would be like for him to view his 'bro.' It was a big ask! He need not have worried. Haydn and I drove Damian's car, while he and Tyneal collected the work van. We set off on a journey to Bairnsdale; a journey that no family member should have to make.

Somehow the pain of writing this is overcome by the joy of knowing that Jezz was in good hands. Damian took with him Jeremy's Snoop Dogg CD's. I can imagine Jeremy's amusement as it would not be DJ's choice of music. What a ride the return journey to Melbourne would be. Damian had chosen a close personal friend at Tobin Bros to prepare the body for viewing; he wanted that for his brother.

Before we arrived in Bairnsdale I made a call to Brad Bennett, devoted Father to my granddaughter Ella. Although Megan and Brad are no longer together I asked Brad if he would consider singing at the service. I had always let Brad know that I would like him to sing at my own funeral. I would not have believed it possible; here I was asking  the same for my son. Brad's choice was 'Time of Your Life' by Green Day. Perfect!

Somehow, it was essential to ensure the message going to the young people at the service was about LOVE and HOPE.
Remember that when you leave this earth, you can take with you nothing that you have received - only what you have given; a full heart enriched by honest service, love, sacrifice and courage... St Francis of Assisi
Although I am a devoted Catholic I chose the Riviera Christian Centre as the venue. I wanted, as much as possible to keep this 'A Family Affair' therefore Tyneal's Dad, Mark, A Civil Celebrant, would perform the service. As a member of the Charismatic Renewal, I knew  it would be possible for me to arrange with Father Tony Brady to lay Jeremy's body to rest in the Catholic tradition. God willing, that would be done on our arrival back in Newcastle. It would not be the first time we had chosen to 'think outside the square' for Jezz.

Megan's choice for the music for the Audio Visual display was 'Forever Young' by Youth Group while Claire agreed to sing 'You Are the Sunshine of my Life,' secure in the knowledge that Jeremy was all of that, and more to me.

My amazing family ensured that we did indeed celebrate Jeremy's life. On 28 November 2006 we managed to do just that, knowing that we had a lifetime to mourn our loss. As I complete this post I want nothing more than to express my love and gratitude to Damian/Tyneal and Megan for undertaking the arrangements. Although four years have now passed I know the value in voicing love and appreciation as we never know what each new day brings. 'We know not the time or the place.' With breaking hearts they made the arrangements that allowed me the freedom to listen to the messages that came into my head as Jeremy entered the final stage of his journey into Eternal Life. I cannot imagine how difficult it must have been.

Was it another coincidence that we were able to use family and friends for many parts of the service? In spite of the pain of our loss we knew Jezz better than anybody else thus allowing us, in many ways, to stamp 'his' name on the service.

I remember a woman walking up to me with, what turned out to be her daughter. She explained that she did not know my son but she wanted to thank him, through me, for giving her daughter back her life. It seems to me that there is something special about the young who are destined for a better place. They leave this earth having made a difference.

Have you ever had a son who meant the world to you?

One you loved so very much, and miss him like I do.

Have you ever felt the heartache, or even nursed the pain?

Have you ever shed the tears that drop like falling rain?

If you've never had those feelings, then pray you never do

For on the day that Jezza left me, a part of me went too

Love you Sunshine. Miss you with every heartbeat..

                         

Fellow Bloggers Making a Difference

Today I managed to make it to the Oncology Support Group meeting at the Calvary Mater Hospital. We were let down by technology, thus it was left to the lovely Veronica Fenning  (Social Worker) to come up with a contingency plan. This she did beautifully. Several things came together, giving me a sense of  satisfaction and the hope that others may find pleasure in something that leaves me feeling happy and fulfilled.

I was delighted to see photocopies of blogging information on the table; Veronica encouraged participants to take a copy. This pleased me, as I had previously spoken informally on the subject and I had then sent an email to Veronica leading her to a starting place. I enjoyed speaking openly about a subject that has become an integral part of my cancer journey. There were several things on today's list and these were discussed openly. I think we agreed unanimously that we do best to avoid anyone, or anything, that takes away HOPE. In a discussion on exercise, most felt it was important but did not quite know where to start. I pointed out that it is ironic, the very thing that works for fatigue is exercise at a lower intensity, gradually increasing appropriately. Veronica asked me to expand on that and also where group members would go if they were seeking such information. Big smile on my face, I said 'Where else but fellow bloggers.' It was then I thought of previous posts in which I mentioned my lack of energy. Brenda from Breast Cancer Sisterhood and Julie @ Fitness for Survivors both took the time to email me with personal offers of information and assistance. There is no doubt that I am reminded daily of this wondrous world in which 'Sisterhood' reigns supreme. I am very grateful to you Brenda and Julie. Then, of course, there is Carole who sent me a lovely long email, including list of supplements, that were recommended to her. Where else do we find others so happy to share of themselves?

After the meeting I headed up to have a doppler done to check on the blood clot in my right arm that was originally diagnosed in April. Today's scan was much more thorough and, although I do not yet have the report, I did learn that the sonographer found it very difficult to discern the veins in my neck. He asked about my radiotherapy and I told him that I had been given the highest dose possible. Apparently my Radiation Oncologist decided that any more would negate the benefits and increase the risks. Personally, I feel that many of my problems have come from the after-affects of radiation. How I wish I had the courage to stop at the time my body told me enough was enough. I have increasing amounts of fluid building up in the neck and throat area and the tears literally ran down my cheeks today as he completed the scan. The pain was dreadful! He did comment on the number of 'new' surface veins that are appearing around the chest and arm. I am still a bit in the dark as far as results go!

Dinner over tonight and I turned on the computer to find information from my ISP on a deal on software that will allow me to 'stop typing and start talking.' Once again I am reminded of the generosity of fellow bloggers as I say 'thank you' to Alli who, very kindly, asked a friend of hers about the software he uses to communicate online. What joy! Cannot imagine what it will be like to take up the challenge and learn a skill that will give me freedom on the keyboard once more.

Thank you for the joy that I feel purely because you have come into my life and from showing me that you care. Bless you