Sunday, November 13, 2011

New Territory. Again!

'Life is uncharted territory. It reveals its story one moment at a time.'
- Leo F Buscaglia

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

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

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

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

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

Sunday, October 23, 2011

The Old Girl is Slowing Down




The Waratah is the floral emblem of NSW. This is my very first flower on a shrub that has been in for some years; some joy in my life. Perfect timing!




My breast cancer recurrence. The lesion is progressing rapidly, requiring daily dressing changes. There are no answers to the problem!
 

'There is something terribly morbid in the modern sympathy with pain. One should sympathise with the colour, the beauty, the joy of life. The less said about life's sores the better.'
-Oscar Wilde


Not too much to write about this post, mainly because of fatigue, and lymphoedema, which has the ability to control my life. Suitable management is certainly required and I have not yet found the secret to maintaining lymph flow.

The excitement of observing my first NSW Waratah brought with it much joy, given that we had a period of heavy rain and these shrubs do not like 'wet feet.' I have thoroughly enjoyed looking out through the kitchen window at the magnificent red Waratah, knowing that they are not particularly easy to cultivate. Having lost one bush makes this one even more 'special.'

You may notice some changes in my writing. I am no longer thinking 'straight' due to large doses of opiates required to ease pain symptoms. I have suggested to my doctor that we work only towards making me as comfortable as possible; seems to be working, but not sure if I am making 'sense' with my writing or on the phone.

I have been assessed, and approved, for a Community Aged Care Package. When the Assessor arrived, she made the comment that I must surely know people in high places...smile:) Given that these packages are for the aged - usually 70 and over - the assessor was amazed that I had made it as far as I had. The package provides assistance, subsidised by the Australian Government. To reduce the cost of residential care, the Government provide home services, keeping the elderly, or disabled, in their own homes for as long as possible. I fit in there somewhere! The assessor was fantastic, stating that one of the workers does commercial cooking and could therefore prepare meals in advance for both Haydn and me. Seven hours per week at a cost of less than $10 per hour, is marvellous. I am thrilled with the standard of care that we receive. Haydn has made it clear that he will do whatever it takes to keep me at home if that is where I wish to be. I think care would be difficult as, bein classed as 'High Care,' I would be placed with the elderly, including dementia patients etc. I would have no control over my pain medications and would be at the mercy of staff in an institution. Cannot imagine requiring medications for 'break through' pain, only to be told it would be given when they are ready. Knowing that some partners find it difficult to cope with a breast cancer diagnosis, let alone having to deal with what Haydn goes through daily, I now see a side not seen previously. He amazes me! Although I have waited 15 years, I am so pleased that he is here with me. I cannot fault the gentle man that 'fronts' up regularly to take excellent care of me. Had I left when I had previously considered it, I would be struggling financially, emotionally and physically. That would have presented multiple problems for me.

I require assistance with showering due to the removal of the dressings, and the bleeding that follows, making it impossible to shower myself without help. Having the use of only my left hand it is a bit of a trick as we endeavour to stem the blood flow. The community nurse that visits to do my dressing changes three times per week is going to start ringing me when she is at the gate. I will then be able to prepare myself for the shower, she will be close by when it is time for me to get out. Sounds like it may be just what I need and it will give Haydn a break. He is concerned that if something should happen to him there will be no-one to help me with personal care. Given that my package could include some personal care, including showering, it would be too confronting for someone, other than a Registered Nurse, to help me out of the shower. All in all, I believe I am in the best place possible, with the most appropriate care suitable for my needs. I also have the Palliative Care team on hand. They are a phone call away and I have come to know them well over the past three years.

I have now removed the caption and appear to have lost something in the process. I am not sure if I managed to cut and paste the complete entry so do hope the end makes sense.

Monday, October 10, 2011

Way of the Warrior

'Generally speaking, the Way of the Warrior is the resolute acceptance of death'
-Miyamoto Musashi

On Thursday of last week I kept my appointment with 'Dr Amazing,' in spite of the fact that I had only commenced my first cycle of oral chemotherapy the day before. I find it interesting that when I make my appointments at the front desk, I invariably get a phone call prior to the date to say the time has been changed to 12.30pm which is the final morning appointment, thereby allowing more time for him to spend with us. I know how beneficial the time is for me and I would like to think it goes both ways. May God Bless you Dr Amazing! Up to that point, in my mind, I had continued to come up with any number of 'valid' reasons for delaying the chemotherapy process. Eventually, out of respect for the good doctor, and, as a 'duty' to myself, I gave in and took the first of my tablets.

Doctor made no comment regarding the delay. He simply explained that it did not matter what I did, this 'monster,' as I have come to refer to it, is not me. It is a mutation, distorted cells that have now chosen my body as a host. He again advised that, with my type of cancer, the success, or otherwise, was always an unknown. The consultation raised many emotions, firstly for Haydn and me, and then for the doctor. We let him know that we have discussed the situation at home and felt that retaining some 'quality of life' was more important than 'fighting,' doing battle to add maybe weeks or months to the natural outcome. As he observed the chest wall, he talked about his role in healing, doing what he is trained to do because that is his chosen field of work work. To prolong life is his aim. Here we are discussing the direction we have chosen and he shed a tear as he said he also needs to be able to come to the same place of acceptance in which we appear to be. It was rather nice to have him gather a tissue from the box and 'shed a tear' with us. I expressed my gratitude and thanked him for what I see as a real blessing. If I must go through this it is comforting to know we are on the same team.

He then asked about blurred/double vision, shortness of breath etc, explaining that he would like to do CT Scans to rule out spread to brain, lungs and liver. Given that I have had mild headaches and shortness of breath since my last scans, it makes sense to check particularly as my last doctor's visit with my General Practitioner led me to believe this would not 'kill' me. Where to from here then?

Although my local doctors tell me this is not common, I had an ACAT Assessment last week to see if I am eligible for Government funded assistance to 'free' Haydn up at home. The assessor was Chinese, very practical, with nursing experience in hospice and palliative care. She was not surprised by the description of my chest wall, saying it was quite common, even in young breast cancer patients. I liked her idea of trying yoghurt, which is apparently very cool and soothing. Definitely worth a try on a smaller area!

All in all, there are no real surprises. Tomorrow when I see my general medical practitioner, I will discuss with him the necessity of prescribing suitable pain medications knowing I would like to ensure I am as comfortable as possible for as long as possible.

Monday, September 26, 2011

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.


Wednesday, September 14, 2011

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....

Sunday, September 4, 2011

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.) 

Saturday, September 3, 2011

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)

Saturday, August 27, 2011

Remember Me

'Remember me in the family tree
My name, my days, my strife;
Then I'll ride upon the wings of time
And live an endless life.'
- Linda Goetsch


In a conversation with my daughter M recently I was reminded of what I see as the importance of what I do. My 14 year old Granddaughter had asked her Mother about coming to visit. Being aware of my current circumstances, T had asked about them coming to stay at the farm. She pointed out to her Mum that she was afraid I would be gone before she really got to know me. I felt truly blessed to be told that my caring, delightful 14 y.o. Granddaughter really wanted to spend more time getting to know me. Is it only distance that separates us, or is it possible to live in close proximity and still not know someone?

It is a set of circumstances that has kept us apart over recent years. My daughter has been undergoing chemotherapy, plus being fed another dreadful drug for a condition that is not cancer related. While I have been enduring side effects of illness, and treatment, daughter M has had a dreadful time with no family support at all. It has amazed me that, as a single Mum with three children, she has continued to put one foot in front of the other in order to get through the days, in spite of regular hospital admissions and every conceivable side effect. Having endured treatment, she now has to live with unimaginable pain, as a result of rheumatoid arthritis - a side effect of treatment. Unfortunately, she was not informed of the potential for anything like that, so she does not know if she would have continued treatment, given all the facts.

Over recent weeks Haydn and I have been planning a road trip to Victoria [health permitting] to spend time with my family. In the meantime, I have made the decision to stop spending time shredding personal papers. Beautiful cards written so lovingly, bundled in ribbon, along with many years of personal letters and journals, will all be left here for family members to read if they so desire. After all, if my family feel they do not know me, they can get to know me through others eyes, through reading all that has been written over the years. I have always been an avid letter writer.

Of course, that also includes my blog which, I trust, will be like the indelible influence of a loving grandmother. I explained to my daughter that information missing now, will surely be highlighted in both my writing, and the thoughts of others, who have so lovingly taken the time to send me such beautiful cards as well as to correspond over the years.

On that glorious day when we are united as family in Eternity we will already have made our acquaintance.

Tuesday, August 23, 2011

Thank You for Holding my Hand

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

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

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

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

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

Sunday, August 21, 2011

The Last Word

'All our life passes in this way: we seek rest by struggling against certain obstacles, and once they are overcome, rest proves intolerable because of the boredom it produces.'
BLAISE PASCAL, Pensees
Although I had promised myself there would be no further dialogue on the matter of the missed breakfast, and the assistance given to the neighbours, I cannot help but have the 'last word' in order to clarify the situation. Sunday morning breakfast was far from the only occasion that I was left 'Feeling Let Down and Disappointed' It happens frequently.
Indigo Dreaming is a Blog of 'My Life;' a record for my children and grandchildren. I deliberately choose to keep most of what happens in my personal relationship away from these pages. I remain mindful that what is written here is a record for life. The written/spoken word cannot be taken back. Why destroy a relationship that has taken years to build. My life is about learning to love unconditionally, which means many things are allowed to 'go through to the keeper.'
The reality for me is that the cancer, recurring in my glands, has spread to the area under the breast. It follows the ribs from the outside in towards the centre. The lesions emerge, appearing to 'pop' out, breaking the surface in pea size lumps. They are inflamed, red, angry and extremely painful. Pain is managed by increasing doses of opiates Wound malodour is a distressing symptom, making life more difficult, requiring regular visits from a specialised Wound Care Nurse. The original fungating wound has increased in size. It is similar looking to a volcano, spewing out its contents, causing me much pain in the area surrounding it. It seems chemotherapy is the only treatment for something that appears to have come from a young specialist who choose to give more, rather than less radiation, knowing that the area cannot be re-radiated.
For me, and my loved ones, it is not a 'pretty' picture. I have no use of my right lymphoedema hand/arm and it continues to hang limply, like a lump of lead, by my side. Domestic duties are difficult. Meal times a bit of a nightmare as H eats only to live; he is not particularly interested in food. Food preparation was always my domain; I loved to experiment with food. I do have domestic assistance and love it when Carole and Tracy arrive each Monday morning. My home sparkles when they leave but they do not help me to get dinner on the table each night.
I guess the reason that I look forward to the opportunity of going out to eat is that it takes me away from the reality, and boredom, of mealtimes at home. I have convinced myself that lambs fry and bacon is good for my iron levels. Although H is extremely good at providing transport for my appointments, we have no 'social' life together. Breakfast at the Paterson B and B is a 'big thing' for me. I no longer have years to look forward to. Without a miracle, my life is being measured in days, week and months.

Friday, August 19, 2011

Grandchild Number 10



'A garden of Love grows in a Grandmother's heart.'
  - Author Unknown

I would like to be well enough to make the 15 hour road trip to Victoria in order to spend time with my family; to hold my new Granddaughter, Layla Isabell, in my arms. Layla already holds a special place in my heart. She was born on 26 May.  I am learning to make full use of modern technology, giving me the opportunity to keep an eye on her progress. These three pictures were taken in June, the month after her birth. Adorable!  
                                                                                                                                                                                                             





Thursday, August 18, 2011

Too Much!

'I must learn to love the the fool in me, the one who feels too much, talks too much, takes too many chances, wins sometimes and loses often, lacks self-control, loves and hates, hurts and gets hurt, promises and breaks promises, laughs and cries.'

- Theodore Isaac Rubin

I have had second thoughts since my last Post. As a result, the decision has been made to simply thank you for your Comments and to let you know that I am very grateful to you for the feedback, both on the blog and by private email. I will not respond individually for fear of further implicating myself. There is a history attached to the story; I know things will not change. For me, it is undesirable! I do have a plan and will go about taking steps to implement it.

Today I had a phone call from my Tai Chi teacher. Attending classes in the village has been an interesting experience. I began yoga and Tai Chi when we moved permanently to the farm. I had expectations of meeting the locals and forming friendships. Three years of classes and yet my absence appeared to have gone unnoticed in spite of the fact that my circumstances were known. Until Vickie, teacher, phoned recently, there had been no word from anyone. She asked about making the trip from Dungog to Gresford to meet me for coffee. I suggested the farm was a good spot as Haydn has now mastered the coffee maker and cappuccinos are on the menu. Cappuccinos were my poison of choice after Jeremy's accident! They were the very things that kept me alive at the time. They have now been recognised as my downfall, contributing to my current health crisis.

It was interesting to learn from Vickie that she felt the room 'lit up' on my arrival. I asked her if that could somehow be responsible for the the ladies of Gresford making no effort to be friendly.

Now! That is another post.

'Do not give too much to feelings. An overly sensitive heart is an unhappy possession on this earth'
- Johan Wolfgang von Goeth

Wednesday, August 17, 2011

Feeling Let Down and Disappointed

'Some people think it's holding on that makes one strong - sometimes it's letting go.'
- Author Unknown

Although I attempt to keep personal details of my relationship with Haydn private, I am in desperate need of counsel. You, my 'Blog Buddies are 'it!'
Sunday at the farm is our morning to 'sleep in' and listen to the radio although, as retirees, we are able to do pretty much as we like. We had made plans to breakfast at the local B & B, which meant there was no rush. At 7.20am we were disturbed by a phone call from K, a friend and neighbour of Haydns [he had previously made it clear she was his friend.] I was not told exactly what K said; Haydn mumbled something to her along the lines of 'maybe' having something to do. He told K he would ring her back. When he spoke to me he said that D [K's partner] would need to go back to hospital. Haydn knew that D was supported by a fully trained nurse; both K and D are nurses. A friend, up from Sydney for the weekend was there to help. Haydn had given K a hand to muster her cattle on Saturday as she needed to get them ready to be trucked.
There has been an ongoing problem in my relationship with Haydn since he befriended K and D. On Sunday, his language made it clear that he felt some kind of obligation to help K. I suggested he just go ahead as our outing was spoiled anyway. He has always chosen to act defensively when K is involved. Is it my problem that I feel I play 'second fiddle' when K is involved? I reminded him of a previous occasion when there was an incident and I made it clear to him that it may come to making a choice between the two of us. I was frightened by his reaction on Sunday; I know he has a temper, while I am a pacifist. While I remained cool,  he swore at me, telling me that I had 'pushed' him too far. There was slamming of something in the laundry, although I could not tell what was happening as I simply went about organising my medications with my back to him. I think it was a quote from Shakespeare that went something along the lines of - 'methinks he doth protest too much.'
I was bewildered! It seemed like a simple matter to explain to K that we had made plans for breakfast. It was self-explanatory! Maybe I am a simpleton! To be kind to me he may even have been able to apologise on behalf of K for the early morning phone call. Instead of that he was determined to help her no matter what cost.
The situation reminded me of why I felt the need to see a therapist. Has the isolation of life at the farm, along with being in a relationship that appears to be lacking in love, finally caused me to drop my bundle? Unfortunately, D has had several operations since February when her kidney was removed. The past being the best predictor of the future leaves me thinking that, with my own deteriorating condition, I may well find myself alone at the farm, while Haydn tends to K and D. I intend to avoid that at all costs! 

'The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences.'
Eleanor Roosevelt

Thursday, August 11, 2011

Og Mandino Quote

'I will greet this day with love in my heart. And how will
I do this? Henceforth will I look on all things with love
and I will be born again. I will love the sun for it warms
my bones; yet I will love the rain for it cleanses my spirit.
I will love the light for it shows me the way; yet I will
love the darkness for it shows me the stars. I will welcome
happiness for it enlarges my heart; yet I will endure sadness for
it opens my soul. I will acknowledge rewards for they are my due;
yet I will welcome obstacles for they are my challenge'...
- Og Mandino

Sunday, August 7, 2011

Who am I?

'Words of comfort, skillfully administered, are the oldest therapy known to man'
- Louis Nizer

It's official! I'm in therapy!
My appointment with Cath [Psycho Oncologist] went well on Wednesday. Why is it that after chatting for an hour, covering topics that I consider to be very beneficial, I do not remember the ground covered? I went in expecting to talk about my feelings of anger, mainly towards a particular member of hospital staff, and I left not having mentioned it even once.

Cath very quickly picked up that with so much happening to me at this time, I am in a position where it feels like I can't be myself. My identity is connected with my activities of the past; the very things that I have lost! It often seems to me that I am worthless; a feeling that does not sit comfortably!

'Human identity is the most fragile thing that we have, and it's often only found in moments of truth.'
-Alan Rudolph 

Not once did I heard her use traditional text book 'stuff.' We actually held dialogue. I was surprised when she referred to me as having Post Traumatic Stress. There was a brief explanation as to how it occurs with each new crisis increasing existing stress. I jokingly told her it was not a good idea to put a label on me as I just may want to live up to it
.
As the session drew to a close, Cath said she wanted to see me next week. It's important! I have homework. Love being in therapy; it brings with it a sense of peace!

I often wonder if I am the only one that has unanswered questions. Do you feel that you need help as your journey progresses?



Thursday, August 4, 2011

To Chemo or Not to Chemo

'Most cancer patients in this country die of chemotherapy.  Chemotherapy does not eliminate breast, colon or lung cancers. This fact has been documented for over a decade. Yet doctors still use chemotherapy for these tumours…Women with breast cancer are likely to die faster with chemo than without it.' -
Alan Levin, M.D

Arrived in time for my appointment with Dr Amazing determined to listen; I simply wanted to hear what he had to say in response to my own research.

Firstly, he went through the information regarding HYPERBARIC OXYGEN THERAPY and I was disappointed to be told that I am not a potential candidate due to active cancer cells in what is now being called a fungating tumour. Dr Andre did make it clear that if it was purely Radiation Necrosis the Oxygen Therapy would be useful. He handed me the information and explained that the physicians at the hospital would be more than happy to discuss my case with me personally. So, NO Nanoknife Surgery, NO Hyperbaric Oxygen Therapy.

We then went to the use of chemotherapy. Dr Andre asked me why it is that when I am in his rooms I say 'Yes, Yes, Yes,' only to ring two days later and say 'No, No, No.' I laughingly said that is what happens when I am away from his influence. When Dr Andre asked the nurse to take a photograph of my lesion, Haydn asked her to take one of Dr Andre for me to take home. That way, I could look at it when I felt myself waivering..haha.

We asked if chemotherapy would work on my type of cancer. The answer was 'I don't know.' When I suggested to Doctor that this was 'my' body growing this 'monster' so it had to be my underlying body chemistry that needed to be changed, he agree. Just how we do that he does not know. Seems to me that chemotherapy could be nothing more than a 'Band Aid' fix in my case!

I explained my thoughts on being 'locked in' to waiting rooms and hospital visits at this stage of my life. Immediately, and I mean immediately, he suggested oral as a way of avoiding that situation. Once again, I left the hospital agreeing to let him know as quickly as possible of my decision.
'To be complete, a healing system must be able to cover the entire field of human experiences-physically, mentally, and spiritually.
Any system which denies any part of this trinity fails in its attempt to heal to the same extent to which it denies any part or parts.'

-Stanley  Burroughs

Sunday, July 31, 2011

Is My Heart is Elsewhere?

'Impossible situations can become possible miracles.'
 – Robert H. Schuller

Not looking too bad at the end of May

Not looking too good at the end of July
Both Haydn and I feel incredibly sad as we observe my body, and its ability to grow this disgusting, fungating, odorous mass. It is difficult not to be affected by the sight and odour as it is right under my nose. 

My right arm is now akin to a lump of lead hanging loosely by my side. I have to practically stand on my head to dress the top half of my body; makes dressing interesting, and slow. Thank goodness for pull up stretch jeans.

On Friday we had a 2 hour wait to be seen by the Radiation Oncologist. It was a non event!. As usual, he had little more to say than Mmm, Mmm.. I pray that he will learn from this experience. The waiting room was filled with patients, many appearing to be dreadfully ill and yet living in hope that their treatment will give them another opportunity to live their life to the full.

Next stop was to spend time with the most amazing, compassionate Wound Care Nurse who managed to have me laughing, and crying at the same time. She explained how radiation either allows, or causes this to happen. She also said that she sees it far too often. Having given me lots of information, along with dressings to try, she applied a lovely Mepilex Lite, soft Silicone dressing which she said would last for several days.

We arrived home, dressing intact, and yet I could feel the itchiness of the skin below. After some time, unable to stand the discomfort any more, I went to the mirror and removed the dressing. The sight of the wound disgusted me; having had it covered for some time it was repulsive! I simply sobbed uncontrollably.

Although my state of mind was not good I choose that particular time to check the cost of the dressings.Tess had recommended a wholesale site. One of her favourites, a silver Silicone costs $285 for 5 dressings. Oh boy! Will this ever end? Over the years, the costs associated with cancer, and its treatment, have been astronomical.

Tomorrow I have an appointment with 'Dr Amazing' who will give me information on the potential risks and benefits of chemotherapy. Everything in me says the risks begin with the insertion of the port given the breakdown in my skin's integrity. As my body continues to fight this 'monster' it leaves little in the way of nutrients to keep me strong and healthy.

I still believe there is a way to 'beat' this disease. It is up to me to find 'it.'

Once again, I reflect on the isolation of life at the farm. Although I do have financial security, and a very loyal 'best friend' who loves me and cares for me, I am wondering if it is sufficient. Two of my children live in the state of Victoria. My youngest son was born and died in the same state. I intend to use the Funeral Company that employs my eldest son. Apparently I am entitled to a 'good deal' with huge discounts. It all makes sense! Is that my heart whispering to me that it is time to come home? 

'Let your heart be your compass, your
mind your map, your soul your guide...
and you will never get lost'

-Unknown.

Sunday, July 24, 2011

Psycho Oncology Appointment

'Wisdom is to finish the moment, to find the journey's end in every step of the road, to live the greatest number of good hours.'
-Ralph  Waldo Emerson
Recently I met with my Breast Cancer Support Group [Group 33] for lunch. It had been several months since I had joined my friends at the monthly lunches. They found it necessary to summon me! These women are very good at giving me a 'reality check' and deemed it necessary.  It was good to get together! I felt the love; surrounded by people who care, making it good for my soul. It was the perfect opportunity for them to observe my lesion, as well as notice the changes in my manual dexterity. They were shocked!
Vickie, being the outspoken member of the group, with experience in both nursing and palliative care, decided that I needed help. Time for me to see a counsellor! She mentioned the name of a psychologist; fortunately it was one that I had seen previously when she was attached to the chemotherapy and radiotherapy departments at the hospital. A time was set for Wednesday 20 July.
There was much laughter during the 2 hour session; in fact it was freeing. Cath established very quickly that she felt I had a form of Post Traumatic Stress, explaining that it is quite normal, even to be expected, with each new crisis building on pre-existing conditions. I laughingly accused her of putting a label on me!  I felt a tremendous benefit in talking to a counsellor who, although she does not have cancer herself, works daily with patients who do, hence the name 'Psyco Oncology.'

To be perfectly honest, I have no idea what we discussed during our session except that Cath indicated she felt it would be good to have a further session focusing on my feelings in regard to the hospital and possibly radiation damage.  It seems to me that with so many positives coming out of my appointments with my Health Care Professionals at the hospital, it is a shame to allow my feeling towards one young, inexperienced doctor, get in the way of all the good. It is possible that education and youth are no match for experience and wisdom. In my case following the text books has meant ignoring the fact that we are all individuals and there is no 'one size fits all' approach. My understanding is that this will change. It will probably not be in my lifetime, however, things are changing. There are approximately 60% of patients that will benefit from the tried and true research,  leaving a high percentage of the population that need to be treated as individuals. I think I know which group I come into! Hmmm...


Wednesday, July 20, 2011

Message from Spirit

Nankeen Kestrel courtesy of 
http://en.wikipedia.org/wiki/Nankeen_Kestrel

This morning we woke a little later than usual, due mainly to a previous late night and a cool, damp morning. Life seemed almost perfect as we listened to the rain on the rooftop over the sound of our favourite radio commentator. Just the day to stay in bed! Unfortunately that was not going to happen as I had an appointment with my Psycho-Oncology lady. As usual, Haydn was to wear his driver's cap.

I prepared for the shower and, as I found myself peering through the foggy glass shower screen towards Barrington Tops,  I noticed what I thought was a familiar bird on the railing. Rather than looking outwards, possibly for prey, I noticed it was turned towards me. It appeared to be looking me in the eye. I assumed it was a baby King Parrot; there had been one around over the past couple of days. Thankfully, Haydn chose that time to brush his teeth. We were able to talk about our visitor. I was thrilled when Haydn said he thought it was some sort of falcon. Of course, I sent him running for my spectacles, along with the bird book. He was quick to point out that it was  Nankeen Kestrel (Falco cenchroides.) I could not help but notice that it continued to sit and watch, appearing to make eye contact, which I found most unusual.

Once dried, I  reached for my copy of Animal Dreaming by Scott King, who writes that Aboriginal Legend says that the Kestrel is the protector of the warrior spirit. I can expect to be watched and protected against any further attack. An Ancestor Spirit to some tribes, the hawk/falcon is the bringer of good tidings, healthy change and victory. To have a hawk visit suggests I am to receive a sign or a gift from spirit. My visitor alerts me to watch for signs guiding me to the next phase of life. It reminds me to be vigilant; willing to act quickly. I am reminded that it is OK to ask for messages during prayer and meditation. This is a time that I can ask for, and expect to receive, Spirit's guidance.

'Love and desire are the spirit's wings to great deeds.'
-Johann Wolfgang von Goethe


Sunday, July 10, 2011

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.

Sunday, July 3, 2011

Is This Radiation Necrosis?

Confronting!

Painful

'Feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear, instead of being bad news, are actually very clear moments that teach us where it is that we're holding back. They teach us to perk up and lean in when we feel we'd rather collapse and back away. They're like messengers that show us, with terrifying clarity, exactly where we're stuck. This very moment is the perfect teacher, and, lucky for us, it's with us wherever we are'
-Pema Chodron


The past 10 days have certainly kept me out of mischief with appointments and tests taking up any spare time, as well as keeping me away from the keyboard. 'Dr Amazing' continues to 'amaze.'

Who would have believed that, in the Public System, I would see my Oncologist, Physiotherapist and have PET Scan within 4 working days? Truly Amazing! On the fifth day I had my first phone call regarding the results.

Dr Andre has kept me well informed with phone calls each day, including updates. When he called me Wednesday he had just received the written report on the PET Scan. He was actually in Taree, which is probably 3 hours travel from the hospital at which he consults. He opened the conversation by asking if I had time for him to read the report to me. How cute is that? On listening to the report, I felt deflated and let down, wondering if this clavicular lesion is indeed recurrence of my original breast cancer or radiation necrosis as suggested by one of the doctors at the Mater Hospital at the time of my PET Scan.

I have chosen to go through my medical files over the past few days and, interestingly, I find that the lesion pictured above above is the very one that appeared within one month of completing a heavy dose of radiation. The MRI at that time had shown 'appearances consistent with amorphous infiltration of the right thoracic outlet involving muscles, brachial plexus and vascular encasement and axillary lymphadenopathy.'

While 'Dr Amazing' is concerned at what appears to be spread to several new areas, I now find it has been there, according to test results, in tests requested by my radiation oncologist. I will now be asking Dr Andrea to review all copies of the reports and reassess my situation. Taking a wild guess, I would say that, had my radiation oncologist referred me back to a medical oncologist, my current circumstances may well be different.. I was certainly disadvantaged, I would say, by the fact that my medical oncologist [ married to my radiation oncologist] has been off on maternity leave for over twelve months. Of course, this had to happen to me during that time.

According to mythology 'It's not over till the fat lady sings' and I have not yet heard her sing. Haha..

In the meantime, Cheryl is consoling herself with copious amounts of coffee, cookies and chocolate.



Monday, June 27, 2011

Confirmation of What?

'Whenever a doctor cannot do good, he must be kept from doing harm'
- Hippocrates

Regular readers of Indigo Dreaming would be aware that 'Dr Amazing' saw me on Wednesday of last week. Friday I received a phone call informing me of today's PET Scan appointment.

Being only short notice, the instructions for the scan had been given verbally. Haydn had written them on the back of a newspaper that went into the recycling bin the following day. As he had a 10.45am doctor's appointment himself, he dropped me at the hospital and went on his way. Knowing that I had to fast for six hours I was suspicious when Haydn said that he had been told I could drink tea, coffee and water. Before ordering my cappuccino I thought it wise to check with Nuclear Medicine. I was disappointed to learn that my cappuccino was on hold until the completion of my test which would be well after 3pm.

Staff were wonderful as usual! The nurse did weight and height before inserting the cannula. She then called the doctor who would ask me the routine questions. I mentioned that I had a clavicular lesion which appeared to be something 'different.' She was happy to have a look. I felt empowered when she asked me if it was radiation necrosis. I believe it was confirmation of what I had always suspected, in spite of the Radiation Oncologist being in denial.. The problem for me now is that I have no idea of where to from here. Tonight I asked the question of Professor 'Google' in the hope of finding answers to what appear to be unanswerable questions.

My understanding is that 'Dr Amazing' will have results by Wednesday.

Sunday, June 26, 2011

'Change Starts When Someone sees the Next Step' - William Drayton

'Change is the essence of life. Be willing to surrender what you are for what you could become.'
- Author Unknown

Thursday morning arrived; we were up early in readiness for our departure to attend my 8am appointment with the Physiotherapist at the Mater Hospital. Leaving the farm before 7am left me sufficient time to pop my head into the radiotherapy waiting room. I wanted to check if my Sister and Brother-in-Law were there. B-I-L Brian is currently undergoing radiation, following hormone treatment for prostate cancer. Unfortunately, our paths did not cross on that day.

I headed upstairs and waited in anticipation of Judith's arrival. Her face broke into a smile when she recognised me. Interestingly, my file was not available, due to my appointment with 'Dr Amazing' as Emmy now has me referring to him. Shortly, there was a knock at the door heralding the arrival of my file. I was impressed! The Mater is a huge facility. It is very easy for things to go missing, which was the case with my scans recently. They did not reappear for months.

Judith noted that it was 14 months since my last appointment.  I was happy to give the explanation that her instructions were always clear, allowing me every opportunity to undertake practise on my own. With a home based programme, along with regular Tai Chi and Yoga classes, I have been successful in my efforts to keep the swelling under control. It is only when changes occur that I get myself into trouble. This appeared to be one of those occasions.

It was a surprise, and somewhat of a relief, to hear her say the lower arm was surprisingly soft on examination. A good starting place!  We have learned from experience that manual lymphatic drainage is not necessarily a good thing for me owing to a case of cellulitis following treatment with another therapist. During the examination, she was able to check areas that would be effected by spread to the brachial plexus. She did speak to me as she worked, noting both good and not so good points.

I let her know that Dr Andre wanted her to call him at the end of our consult. The hour went quickly. I felt comfortable to question her on her findings, asking her about her 'report' to 'Dr Amazing.' She did say that in spite of the 'positives' she was concerned about many issues.

At lunchtime on Friday, Haydn and I had gone downstairs to our vehicle when we heard the telephone ringing upstairs. There was no way we could make it back up in time to answer it so we made the decision to let it go to Message Bank. It was then the Cell Phone began to ring however, it was in a bag on the rear seat. Oh well! Time to attend to those calls on our return. That was not to be! The upstairs phone rang again; Haydn went bounding up the stairs three at a time. He called loudly to inform me that it was the Mater Hospital advising me of an appointment had been made for a PET Scan. As I headed upstairs the Cell Phone started again. This was getting to be ridiculous! This time, breathing heavily, I answered it to hear the voice of 'Dr Amazing.' He too was ringing to let me know about my upcoming PET Scan. My mind was ticking over. This sounds like 'serious' stuff.

Friday, June 24, 2011

It's Official! I've Been Classed as 'Unique'

'Our inner strengths, experiences and truths cannot be lost, destroyed or taken-away. Every person has an inborn worth and can contribute to the human community. We all can treat one another with dignity and respect, provide opportunities to grow toward our fullest lives and help one another discover and develop our unique gifts. We each deserve this and we all can extend it to others'
- Author Unknown

In spite of my best intentions, I still seem to be conspicuous by my absence from these pages. Some of you are aware that I agreed to a huge challenge by staying at the farm alone for 4 days while Haydn went to town to 'babysit'  his grandchildren allowing his Daughter and Son-in-Law to travel to Fiji. In his absence it rained, and it rained and it rained. I did not even attempt to drive to the mail box after the first day. Four inches of rain in 48 hours left the ground sodden and water logged.

On the Friday morning I received a phone call from the hospital giving me the news that I was scheduled to begin chemo on Friday 24th at 2.30pm. It came as a complete shock!  I had an appointment with my 'amazing' oncologist yesterday. It was Wednesday 22nd and there were questions to be asked. Concerns and fears causing me angst. On Monday I phoned the Physical Therapies Department of the hospital and was excited to be given a one hour appointment with Judith for Lymphatic Drainage on Thursday morning at 8am. I was thinking it could be the swelling that was preventing me from raising my arm. If only!

During the consultation with Dr Andre, I mentioned the sudden onset of the loss of the use of my right arm. Dr Andre looked up, put his pen down, and began to carry out tests on the arm.  His apprehension was immediately obvious. I waited patiently for him to complete his assessment before  commenting. He then said that we would possibly have to change our plans. Having ticked several of the boxes that were a concern to me on the Liposomal Doxorubicin Chemotherapy Patient Information Sheet, he noted that they were all skin related. He listened as I told him about my severe allergic reactions to minor things like ant bites. When he learned that I had not had any chemo education, he suggested that I was unprepared. The chemo would need to be postponed for the present.

It was then he 'hit' me with the 'biggie,' which was simply the possibility that the cancer may already have spread to the brachial plexus again. That would be the most likely explanation for the loss of the use of my right arm. Maybe it has nothing whatsoever to do with lymphoedema?

Knowing that he had just travelled to the United States and Canada for an Oncology Conference, I asked him if he had any experience to call on with cancer taking this form. He smiled his beautiful smile and replied 'You're Unique.' It's Official!

'As we grow as unique persons, we learn to respect the uniqueness of others.'
- Robert H Schuller

He asked me to have the physiotherapist call him after she had completed her assessment and therapy. He also said that as I had not had any chemotherapy previously, there were several other drugs that could be used. He would leave the Patient Information Sheets at the desk for me to pick up after my appointment with the Physiotherapist. It was then he said that, depending on the findings of the physical therapy session, he may need to do a PET Scan to determine exactly what is happening with this 'monster.' I will begin working on the next post, with some results, first thing in the morning. Thanks for reading♥



Thursday, June 16, 2011

It's Happening Way Too Fast


‘Live with intention. Walk to the edge. Listen hard. Practise wellness. Play with abandon. Laugh. Choose with no regret. Appreciate your friends. Continue to learn. Do what you love. Live as if this is all there is.’ – Mary Anne Radmacher 
It is hard for me to accept how quickly changes are taking place in my body.
 Haydn left Tuesday morning to stay with his 3 grandchildren while his Daughter and Son-in-Law visit Fiji with a view to purchasing property.
I admit to feeling a little nervous about being on my own at the farm, in spite of the fact that it was entirely my decision to 'go it alone.' My lesion had been weeping; it seemed unnecessary to 'expose' my cancer, or myself, to the children. I have services available here; it is simply a matter of making a phone call.
Wednesday afternoon my skin felt like it had the 'creepy crawlies.' Several times I went to the mirror to check for insects on my neck only to find there was nothing. I also felt as if there were maggots crawling beneath the skin's surface, just as I do now. The feeling persisted!
Things appeared to be reasonably normal when I awoke this morning. On going to shower, I noticed my lesion was, once again, weeping. It was from the original sight, which was not expected. Attempting to place shampoo into the palm of my right hand, I found I could not lift my right arm at all. I was shocked! I found myself having to physically lift it with my left hand. The whole thing seemed to have happened overnight.
As the day has gone on I have been aware of the heaviness of my right arm. It is a 'dead' weight! It is more difficult than ever to perform any tasks. Previously, I had been able to raise it unassisted. I am no longer able to do that! I am unsure of what will happen now. Today I have done a lot of screaming and yelling in the belief it is a way of releasing some of the built up tension that has been slowly accumulating since my CT Scan in late January, heralding the beginning of the progress of this 'monster.'.