Message from Paul

'We don't accomplish anything in this world alone... and whatever happens is the result of the whole tapestry of one's life and all the weavings of individual threads from one to another that creates something.'

- Sandra Day O'Connor

At a time that I want desperately to write, I simply find I do not have the energy. Never before have I experienced fatigue like I live with now. The lymphoedema of my right arm has become a serious problem! I am due to see the physiotherapist at the hospital on Wednesdday and, although I know there will be benefits, a one hour consultation is not sufficient time to correct a condition that is rapidly deteriorating. I spend day after day sitting and staring into space thinking of things other than the pain

At the time of my breast cancer diagnosis, I was advised of the work of a Bio Chemist who had successfully treated many cancer patients. I decided to pay P a visit and was impressed when he spoke of correcting my underlying body chemistry. That made sense to me! Unfortunately, during treatment P received adverse publicity and was banned from continuing to practise as a bio chemist. We remained in contact.

My condition has left me with little energy for those close to me; even less for friends and acquaintances further down the list. Yesterday I received a message from P asking me to ring him today as well as enquiring after my health. P reminded me that we share a friendship that will weather any storm. I was touched!

Today I called bio-chemist P. We discussed my condition, which gave me the opportunity to tell him that life is difficult. I can see no doors opening for me. No way of reclaiming my life; giving back some of the quality that has disappeared. I appreciated P's response when he said 'We are not giving up! You have been a thread in the tapestry of my life for too many years. I do not want a hole.'

It seems I am overcome by the frustrations of ongoing health problems. I am looking for release from the pain. There has to be a solution!

At a time that I so desperately need the benefits of your response dear friends, I find myself struggling to do my own posts, or even to read and comment on yours which is heartbreaking for me.

I Think I Can

'What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal.'

- Albert Pike

How could you not love a doctor that opens a consultation with 'I've missed you; where have you been?' I was surprised! I was back in my 'comfort zone' with 'Dr Amazing.' When leaving his rooms last time, I understood he wanted to see me three weeks after commencing chemotherapy, so there was no need to take up his valuable time after saying 'no' to chemo.

He was happy to discuss the disease progression, listening intently when I expressed my thoughts. I asked him if he had seen anything like this previously and was surprised to learn that, although he had not seen it in Australia, it was not uncommon in African women. I mentioned different conversations that I had with health care professionals, and the possibility of this being radiation damage. Given that this is local chest wall recurrence it appears to respond differently to treatment. When I mentioned the possibility of cancer cells not being killed by radiation, then travelling along the vessels until they reach a point that has been damaged by radiation, or may even have glands infiltrated by cancer, it stops dead in its tracks. With nowhere to go it then breaks through the skin that has been 'zapped' and weakened. 'Dr Amazing' immediately said that he would be doing his own research. He was going to head into the Radiation Department to begin asking questions. Maybe some good can come from this! I like his style!

'Dr Amazing' checked and photographed the wound, expressing his concern at how aggressive it has become. He asked about the degree of pain and it was obvious that he really cared; he wanted to do everything possible to alleviate some of the pain and suffering. He even commented that my face was beginning to look ashen from the pain. He once again discussed the potential benefits of chemotherapy simply to manage symptoms. I could almost be sold on the idea! I was surprised when he mentioned using me as a Case Study. Strangely, I found myself warming to the idea. Dr Andre feels that not having had chemotherapy previously could increase the benefits. He comes across as being such a caring, compassionate man, genuinely interested in helping his patients, that it is almost impossible not to want to help him.

I remember that being with Jeremy gave me a sense of being the person I most enjoyed being. I truly felt that it was a special bond we shared; something reserved for just the two of us. It was not until I travelled to Victoria to bury my son that I realised his 'special' charm was part of who he was. Everyone that had the privilege of spending time with him felt exactly the same. You truly believed you were the most important person in his life. It gave me such a kick to realise he had that effect on all who knew and loved him. 'Dr Amazing' is exactly the same! As I sit in his consulting rooms, I truly believe  I am his number one patient and yet I know in my heart that as soon as the next patient walks in, they will feel exactly the same. Oh what a blessing!

Given that he is prepared to research the effects of radiation on localised breast cancer recurrence and that he is interested enough to make me a 'Case Study' does put a different slant on things. Knowing that Jeremy always said he wanted me to do less for him and more for myself in order to overcome this wretched disease has me thinking. As I have continued to struggle to do do this for myself, I think it is time to do this differently. Feeling truly blessed to have 'Dr Amazing' as my oncologist it is time to consider chemotherapy treatment for him, in the hope that others may benefit from my experience. I know that he would like to be better equipped to stop such cancers dead in their tracks. Together, we just may be able to make a difference!

Tomorrow when I go for lymphatic drainage on this swollen painful limb, I will call into the pathology department for the preparatory blood tests, followed by a visit to the pharmacy to collect the prescription for the Xeloda. One small step for....

Please Pray

'If thou shouldst never see my face again, pray for my soul. More things are wrought by prayer than this world dreams of.'

-Alfred Lord Tennyson

'Lord don't take my tears or my cross away
For I would grow weary and forget to pray.
I want to serve You all of my days,
I'll share You with others along life's way.

Lord may I never take for granted
All the Blessings You send my way,
Let my heart give You all my Praises,
Following Jesus I will never dismay.

For my tears will keep me humble
Though many times I fall and crumble,
Lord grant me strength for each new day,
Lord don't take my tears or my cross away.

Teach me Lord to never grow careless
Or grow weary in my walk each day,
Remind me Lord how much I need You,
Lord don't take my tears or my cross away.

Lord You see each wave as billows roll
You hear each prayer on Earth extol,
You understand every heartache and tear,
I thank You Lord You are always near.

Lord, You promised a better day is coming
Our cross we'll bear no more,
We'll live with You for all Eternity,
Upon Heavens bright and golden shore.'

This poem was posted on my Facebook wall by a very dear friend (thank you Alice.) 

The Facts and The Conclusions

'It is not a question of God allowing or not allowing things to happen. It is part of living. Some things we do to ourselves, other things we do to each other. Our Father knows about every bird which falls to the ground, but He does not always prevent it from falling. What are we to learn from this? That our response to what happens is more important than what happens. Here is a mystery: one man’s experience drives him to curse God, while another man’s identical experience drives him to bless God. Your response to what happens is more important than what happens.'

–Chip Brogden

A picture tells a thousand words. If you notice the region between the arm and the wound, you will see that it is fluid filled and very inflamed, causing a great deal of pain and discomfort. There is a concern that with little movement of fluid, cellulitis is a potential risk.

I have decided to do a review of test results and findings. This will provide an overview of the disease, and its progression, allowing me to summarise at a later time.

Fact: When Haydn and I retired in July 2008 there were plans to farm, socialise and travel; and not necessarily in that order.

Fact: Although Haydn had owned the land for approximately 20 years, the new house was built with a view to living comfortably in retirement. All of these things take money; we thought we were prepared for all possible outcomes.

Fact: It was only a matter of weeks before I began suffering debilitating pain; pain that had me watching television from the couch throughout the night while walking down the driveway screaming in agony during the day. Pain that prevented me from attending local Tai Chi and yoga classes as a way of exercising and meeting people.

Fact: It April 2009 that I was eventually referred to a Consultant Neurologist who recognised my suffering and requested a MRI. I was prescribed Oxycontin and Lyrica [pregabalin] for the pain.

Conclusion: Appearances consistent with amorphous metastatic infiltration of the right thoracic outlet involving muscles, brachial plexus and vascular encasement with axillary lymphadenopathy.

Fact: Radiotherapy was the only treatment offered. At no time was I told of the potential for secondary cancer as a result of treatment. Due to the severity of my pain, I failed to do my own research. I was told that the recommended dose would minimise the risks and maximise the benefits given that the area could not be re-radiated. I accepted that it was to be done in 'good faith,' therefore I chose to place my trust with the doctor.

This picture was taken well before the end of treatment as Haydn refused to take pictures as my flesh began to burn like a blowfly on a barbecue.

Fact: Approximately 5 days before last scheduled treatment I went in as usual and prepared myself to be 'zapped.' It was then I was told by the lovely Mel to put my clothes on again. She proceeded to hold my hand as she took me with her to the Nurses' Station where she abused them for allowing me to go home the previous day without receiving, what she called 'appropriate' treatment for the burns. More importantly, she asked why my Radiation Oncologist had not been notified of the damage. There were sparks flying. In hindsight, maybe the 'good' doctor could have reviewed the situation.

Conclusion: I think it is obvious. 

Fact: In May 2009 my Radiation Oncologist referred me for a CT of Neck, Chest, Abdomen and Pelvis.

Conclusion: Tumour recurrence at about the level of the surgical site extending through into the root of the neck. Malignant lymph nodes in the right axilla. Oncologist made no recommendations. It now appears this may have been the beginning of the secondary soft tissue cancer, resulting from radiation damage.

Fact: In January 2010 a CT of the Neck and Chest resulted in evidence of a new soft tissue lesion which arrived anterior to the right first costosternal joint. Lesion measures 15 x 17mm.  Commenced Arimidex [Aromatase Inhibitor] At this time the increasing nerve pain in my right arm/hand had effected my ability to function normally in the home. Domestic duties, previously undertaken so easily, had now become difficult. Much of the fun of cooking was gone. I was also thinking seriously about life on the farm. No longer able to drive a motor vehicle due to prescribed medication and disability, I began to feel 'trapped.' It was my blog 'buddies,' Memory-of and Facebook friends that allowed me to have the friendships lacking in real life. Fatigue was an issue as talking on the telephone wore me out. I felt deserted by friends that found the 180km 'round trip' from Newcastle just too far to travel. Once again, we were disadvantaged by the isolation.

Fact: In February 2010 a PET Scan noted several foci of increased FDG uptake within the upper arm/chest, including 3-4 lymph nodes. A large right jugular node was also noted. Increased uptake noted in several nodes throughout the right chest wall.

Conclusion: There are several right upper arm and chest lymph nodes, including a contralateral left tracheobronchial lymph node, which are consistent with malignant disease. The Referring Physician was the same Radiation Oncologist who, at no time, recommended further treatment.

Fact: In April 2010 a Right Arm Venous Doppler showed a chephalic vein thrombosed over a 9cm segment.

Fact: Comparison PET Scan - by now radiation damage from treatment and testing puts me at increased risk.

Conclusion: Comparison with February 2010 PET-CT scan demonstrates significant reduction in intensity of activity in the persisting nodes in the right axilla, right neck and right parasternal Aromatase Inhibitors.

Fact:  In January 2011 'Dr Amazing'  requested a Radionuclide Bone Scan.

Conclusion: No evidence of boney metastases.

Fact: CT Neck, Chest, Abdomen and Pelvis

Conclusion: Increasing size of right supraclavicular lobular masses with associated bone destruction.

Suspicious change in the area of right inferior lung scarring which may reflect further benign change or small mass.

Post surgery right axillary changes mostly due to radiotherapy with also a suspicious nodal metastasis which has not enlarged.

Fact: In May 2011 Neck CT shows previously noted left supra-clavicular adenopathy with a solitary nodule measuring approximately 6mm remains relatively unchanged.
The right medial clavicular mass has enlarged and now measures approximately 4.3cm x 19.5cm in transverse and AP dimensions. Again underlying permeative bone destruction of the medial clavicle and its cortical margin is noted.
CT Chest - same date compare to January study. There is an ill-defined soft tissue stranding in the axilla which was previously noted and is unchanged.  A nodule in the right pectoralis is likely secondary to post radiation effects.

Conclusion: The right supra-clavicular lobular mass with associated bone destruction has increased since the previous scan.

Fact: In June 2011 Dr Amazing requested a PET scan which showed an avid FDG uptake in the right chest wall lesion which now measures 67.6mm height, 53.5mm at greatest width and 20.7mm. There is a periosteal invasion with FDG uptake in the right medial clavicle. Immediately lateral to this lesion there  is a small FDG avid nodule in probably a subpectoral site.   
There are at least three further lesions in the anterior chest wall from the nodule to immediately anterior to the liver.

Conclusion: Today's scan is consistent with FDG avid malignancy in the right chext wall, axilla, superior mediastinum and right axilla. There is no definite evidence for FDG avid disease in the right brachial plexus (light at the end of the tunnel)