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.

Shh! Don't Talk

‘Two are better than one; because they have a good reward for their labour. For if they fall, the one will lift up his fellow: but woe to him when he falleth; for he has not another to help him up.’ – Bible: Ecclesiastes
Yesterday I suggested to Haydn that I would be looking to make plans to move next year. As you know, I struggle with the isolation and loss of independance. My cancer has robbed me of that!  As only Hayd could, he said  'Where would you go? Who would look after you, nobody wants you?' Good one Hayd! Fighting back tears, I said little except that the decision would be mine. And mine alone! I live with the belief that 'things work out best for people who make the best of the way things work out.'

The past couple of days have been particularly difficult. There have been many tears shed, and much swearing, particularly when I found myself unable to throw the sheets over the line. I now have limited range of movement in my right arm and shoulder. My pain meds have been reduced in the hope that the chronic fatigue will miraculously disappear however, I am adjusting to increased sensations in the inflamed nerve endings.

 I have taken the following lines from  Paul who opened my eyes with his posting of Desiderata....
'But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.' 
It seems, at times, the fatigue and loneliness is 'playing with my mind.'

This afternoon Haydn arrived home with his 'Shh! Don't say a thing! Just listen to what I have to say.' He proceeded to tell me that he thinks it would be a good idea to buy a caravan. Last year we purchased a new Mitsubishi Pajero 4WD with that in mind. I think it was my decision that it was all too hard; my pain had returned with a vengeance and I was not in a good place. The thought of being organised enough to pack and unpack a van seemed like hard work. As the owner of industrial sheds in Newcastle, there is always work to be done; Haydn likes to be busy. We would be able to take the van down and stay for a few days, allowing Haydn to work on the sheds and me to receive much needed therapy for my lymphoedema etc. Of course, there would also be the opportunity for socialising. Haydn feels we could take the van across to the coast and spend time. I am a little uncertain as Hayd is a 'worker' and finds it very difficult to relax. He does not enjoy being a 'tourist' so it would mean changes. The big PLUS for me is that we would be able to visit my children. God willing. Yeah!

Visit to Dr Sales

How do I really feel about the necessity of regular visits to my General Practitioner? Normally I find them more of an inconvenience than anything. On a day to day basis, I still enjoy reasonably good health. Providing the unbearable nerve pain is managed, my side effects from medication are minimal. Time taken for appointments can, therefore appear to be unnecessary.

The reason that Dr Sales insists on reasonably frequent visits is probably due to the medications required for pain management. I take several medications on a daily basis. Lyrica [Pregabalin] and Epilim [Sodium Valproate] are considered to be anti convulsant, however, in my case, are used effectively for nerve pain. Oxycontin works differently. Being an opiate, it is considered to be addictive when used inappropriately. I have managed, in the past, to reduce my dosage successfully; it is not necessary therefore, for me to worry about becoming addicted. More than likely, I will be on it for life. As much as I do not like taking this particular medication, I like the pain a lot less. Fortunately, Dr Sales applies to the Commonwealth Government for an Authority which gives me one month's supply of Oxycontin [60 tablets] for the cost of 20 tablets. In dollar terms, this is $33 instead of $99. I am allowed a maximum of 1 months supply.

My pharmaceutical bill each MONTH can be anywhere between $130 and $230. There are additional costs with vitamins and supplements to overcome, in some cases, the effects of the medications. Beginning January 2010 I have been slowly working my way towards reaching the pharmaceutical Safety Net. Consequently, I now pay just a little over $5 for each prescription. Hooray!!!

On Tuesday I discussed with Dr Sales my laryngitis which has been coming and going over the past two weeks. First thing in the morning, my sputum is blood stained. Dr Sales [Milton] suggested a chest x-ray. At this point I questioned the necessity of yet another test. My fatigue is far more of a problem for me and a resolution to that would be most beneficial. That is the one thing that keeps me house bound, out of the driver's seat. As I have mentioned on numerous occasions, the isolation of life at the farm is one of my major concerns.

Thankfully, Milton has given me a request for bloods to be done. The deal being that if there is any sign of a problem with iron levels, I will undergo a chest x-ray. Further investigations may be necessary but I do not feel any sense of urgency as I recently received very good results from PET/CT Scan. He will also check B12. Low levels could be behind this constant tiredness. What I would not give to feel revitalised. Energy levels have been a problem since completing radiation in June 2009.

In a bid to increase my energy levels I have begun to use the exercise bike that has been sitting idle for some time. Guess this means I will have to become a lot more self disciplined. On the up side, I will then have more energy for blogging.

Another Day

Another day...another doctor's visit.

The discussion appears always to be about side effects of medication; and therefore changes to same. I was disappointed to find that my INR reading was under 2 and, not quite at optimum level to prevent blood clotting. An increase in Coumadin to 6mg should give me an INR reading of between 2 and 3 within 3 to 4 days.

Once again, Dr Sales mentioned the obvious drawbacks of living at Vacy. I can say, with absolute certainty, that the decision to retire to the farm was not a good one, given my current health problems. What a good idea it seemed when I was healthy, and capable of driving myself wherever I wanted to go. An hour to Newcastle was nothing.

Somehow it seems I have made my bed, as my late Mother would say. Haydn is a farmer; this is HIS life. As I face my own mortality I miss my friends and the many opportunities to visit the local shopping centre for a cup of coffee. Or, to watch the world go by.

As I ponder my current situation it would seem I have a way to go to make any type of life changing decision. Dr Sales assures me I am a long way from going into care, which I had thought was probably my EASY option. Oh well! Back to the drawing board.

Of course there is also the option of believing in the countless possibilities of the mind. Telling myself that this arm is capable of doing everything that it is required to do. If I can do that, as well as getting my medications to the stage that I do not suffer from fatigue, then I could be back behind the wheel and participating in life once more.

Today was an example of just how things go pear shaped while in my current situation. Left home at 8.30am. Saw my doctor at 10am. Finished at 11am. Picked up prescriptions from pharmacy, grabbed some lunch for a 1pm appointment for Bowen Therapy which works a treat on my arm. Remember, Haydn is the driver and he gets to sit in our vehicle for the wait. Not much fun for him and, although he does not complain, I am reasonably sensitive these days. It seems to me, I have lost my freedom. I struggle with the knowledge that I have lost my independence.

As I sat enjoying the company of Ellen [receptionist], I found myself getting agitated when 1pm passed and1.30pm came around. Daphne was still with another patient. I knew that by the time she had finished with me it would be 3pm and, therefore we would be late getting home; Haydn becomes quite tired sitting around all day. I decided to leave without treatment. This would never happen if I was on my own. Why do I feel so guilty?

I know my intuition will tell me when it is time to make changes.

In the meantime I am reminded of the saying 'Things work out best for people who make the best of the way things work out'

Benefits versus Risks

I cannot help but wonder about the benefits and risks associated with some of the medications taken daily in the hope that I will be given time, along with reasonable quality of life.

Towards the end of 2009 I commenced taking Arimidex, which belongs to a group of drugs called Aromatose Inhibitors. These drugs are useful when given to stop the production of estrogen. After three months on the drug I mentioned the debilitating joint pain to my oncologist. She told me to stop taking it immediately.

My instructions were to have a six week break and then to begin a course of Femara (belonging to the same group of drugs.) This was about the 10 December. Approximately 2 days later I began suffering unbearable pain in the right arm/hand. Palliative Care were summoned. I was given an injection that provided almost instant relief. Whew! Don't want to go there again! I believe I actually managed to put some sort of a Post together at the time. I had daily visits from my amazing Palliative Care team until both the pain, and medications, were stabilised.

My General Practitioner (doctor) suggested that the Arimidex may have been controlling the cancer. When it was withdrawn, the pain indicated that it was, once again, on the move. Of course we have no way of proving his theory.

Back to the present.

I commenced taking my Femara in February and there appeared to be no visible repercussions. That is until a routine visit to Dr Milton Sales, (my GP) about one month ago. Not only is this man caring, he is very thorough and believes that more things are missed through not looking than not knowing.

An examination indicated that I could possibly have a thrombosis in the right arm. Sure enough, I was referred for imaging where a Dopler showed a 9 centimetre blood clot. The concern being that it could spread up the arm and could easily move to the lungs or the heart. I commenced a 10 day course of Clexane immediately as well as being put onto a three to six month course of warfarin to thin the blood. This means regular blood tests to check that INR levels are between 2 and 3 indicating that the meds are doing their work.

While visiting Dr Sales yesterday, I mentioned that there was an unusual pain between the wrist and the elbow. He is now confident that the blood clot runs almost the full length of the arm. Blood clotting is a risk factor for approximately 1.2% of patients taking Femara. Dr Sales feels that the benefits outweigh the risks. I am not so sure but will certainly be discussing it with my oncologist when I attend clinic next Wednesday.

There is a 'fear' factor for me. Having experienced the uncontrolled pain of the recurrence in the brachial plexus I am reluctant to discontinue a medication that may well be working effectively to prevent the spread of cancer. I am hoping that my PET/CT Scan on Wednesday gives a clear picture. I am uncertain... finding my current situation quite challenging.

Every day I give thanks for the many blessings in my life and I pray to God to be given the strength to endure whatever it is my future holds.

Life Goes On

It would seem a glitch in a Windows Update was the reason my computer was in Lillo's workshop for the past week. It was great to have it back so why then did I find myself in tears? The deterioration in motor skills, and build up of fluid in my hand and arm saw my typing skills go out the door. For the first time in my life I have become a one finger typist. This is my reason for not responding to emails or commenting on Posts. It is my intention to find some way of overcoming this, so if you have any ideas I would love to hear your suggestions.


Dr Janine Lombard, my regular Medical Oncologist, is currently on maternity leave. I found myself sitting in front of Dr Tony Bonaventura, making every effort to get some understanding of his personality, which is often more important to me than actual ability. He appeared to be non-communicative, which presented some challenges.

I was told that the recurrence of my cancer in the brachial plexus is most unusual (unfortunately for me.) To me this means that the medical profession appear to know very little about my condition, or how to treat the symptoms. Dr Bonaventura suggested that I undertake hormone treatment, using Femara (Letrozole 2.5mg) for 6 weeks. I will then have another PET Scan and, who knows where to from there! Chemotherapy has been mentioned.

Haydn has made it very clear that he is with me for as long as it takes and my children are very grateful that I am in such capable hands. Who would have thought that it would be my ex-husband acting as my carer? Haydn is very reassuring and reminds me, as necessary, that he will do all he can to facilitate my healing.

Yesterday we visited Dr John Prickett at Hunter Pain Clinic. If I have anything to be grateful for, as far as my medical condition goes, it is that the war in Afghanistan means that more is being learnt about the pain associated with the brachial plexus. Dr Prickett suggested that it is the worst pain to suffer from, and one of the worst pains to treat. There is no drug known that completely eases the pain. He did say that most patients he sees are out of control; he sees no sign of that with me. He also said that patients usually suffer fom depression. When the depression is treated the pain eases. After discussion with Haydn, he said that he did not feel that was relevant. Allelulia! Thanks family and friends. You play a huge part in keeping me sane.

I was given a prescription for Sodium Valproate, an anti-epileptic drug, and also Norspan patches to relieve the pain and replace the large doses of Oxycontin which come with dreadful side effects . One of these is the dry mouth leading to tooth decay. It seems that these teeth of mine, which have cost huge sums of money over the years, may slowly, but surely, disappear.

Before having the prescriptions filled I will discuss the treatment with Palliative Care and my new GP, Dr Milton Sales. It is easy to become confused with too many treating practitioners involved. I have learned the hard way the absolute necessity of having Palliative Care on call.

Once again I was told that my case is quit unique and there is very little known about the condition, or treatment.

Dr Pricketts final words were that I should 'revel in my uniqueness' whatever that means...

Medical Update

The past 10 days have been hectic and yet I have remained the farm almost daily. I have the delightful Alison and Corina that do my domestic duties each Wednesday morning. I am home all day and yet I seem to get nothing done. How can this be?


Things changed dramatically on 5 February when I found my 40mg Oxycontin tablets floating in the toilet bowl. I phoned Palliative Care. Dr Newton and the team made the decision that I would be put onto patches; there appeared to be an absorption problem which could have been related to the Dicloxacillian antibiotic that I had been taking for suspected, low grade, chronic cellulitis.

The patches went on Saturday. I discontinued taking oral Oxycontin, under medical advice, and the unbearable pain began about 3am Sunday 7th. Being the caring, considerate person that I am I stupidly waited until 9am to phone Palliative Care. I was at screaming point! By 10.30am Sally arrived and promptly gave me an injection (no questions asked.) Miraculously, the pain quickly abated.

I went onto the 24 hour pump and remained on it until yesterday when Sally arrived bearing the good news that the pump would be removed. Very nervously, I resumed taking Oxycontin at a higher dosage. It is now 3.49am Friday 19th and I have been wide awake since 2am; not actually in pain, but very unsettled!

During this period I have had every test imaginable and the results are 'sort of' in. Dr Gupta phoned Monday with the news that, although the MRI shows a marked improvement in the radiated area, the cancer is still active in the Brachial Plexus. I will learn more when I consult with him this afternoon. Hence the reason for my sleeplessness!

The days fly; daily chores take so much longer. Even the simple task of going to the toilet means I struggle to get my underpants and trousers on. I am unable to fasten them. Even when using public toilets, I am sometimes forced to ask for help. Pride has gone out the door and been replaced with humility and gratitude.

Daily visits from Palliative Care take anywhere from half an hour to two and one half hours.

I still manage to do Haydn's bookwork but I am unsure of the future. I am surprised at the rapid deterioration and loss of function. I am scared, afraid of what is in store. I cry often and laugh lots. I give thanks for my beautiful family and friends that daily express their love and appreciation for having me in their lives.

I am isolated at the farm. I am unable to drive and may never do so again. I have lost so much. The isolation that had become my prison is now my bliss.

I phoned Lillo and ordered a new computer. I asked for the biggest, brightest coloured notebook; the one that most resembles a desk top. I asked about Web Cam and Voice Activated Technology that will allow me to continue my friendships online. I am planning for the day that I am blessed to have life and yet, the degree of disability will prevent me doing things in the way I have become used to.
Have I missed anything?

Today I give thanks for the many blessings that fill my life and the peace that fills my heart.

Angel Wings

I recently purchased this tulip like lotus plant, aptly named Angel Wings.

It has produced its first flower, reminding me that Jeremy is with me in spirit always.

The morning began badly. Although the topic of this discussion could be considered a little sensitive, I feel it is imperitive to record the details.

One of the side effects of Oxycontin is a tendency to constipation. It seems prudent to check for signs and symptoms after going to the toilet. This morning I was shocked to see, what appeared to be, a 40mg Oxycontin tablet in the toilet bowl.

I decided to discuss the matter with the Palliative Care Duty Nurse. Shann listened to my story and suggested that Dr Newton [Palliative Care Doctor] would be the one to ask on her return from rounds. I was told to do nothing and wait for her to get back to me.

What a surprise to find not 1, but 4 more tablets in the toilet bowl at lunch time. Panic!

Another phone call to Shann and then wait. Not long before I received a message asking if I would have any objection to using patches for pain relief. I said anything is preferable to this unbearable pain. I had no idea how long it had been since the Oxycontin was fully absorbed.

It was then I knew that I was being guided. I began to think about the series of events that had led to this. In the past everything was written in my Journal. The return of the cancer in the brachial plexus means that writing is difficult. Almost impossible actually.

It was December that I saw Judy Hickey the Physiotherapist at the Mater Hospital. She suggested that I could have chronic, low grade cellulitis which would require a course of a particular antibiotic. She felt the situation was quite urgent. Rather than wait to see my regular GP, she thought it prudent to see Dr Gupta [Radiation Oncologist] as he was somewhere around the hospital. Dr Gupta was busy, consequently I was seen by his Registrar who prescribed a course of Dicloxacillin. It came with a list of possible side effects. I was not surprised to find myself suffering from gut problems.

Spoke to my GP about the side effects. He changed the antibiotics as there were still symptoms of cellulitis. End of story...

Or so I thought!

Until today. I began to put pieces of the puzzle together.

I realised it was about the same time that the pain returned with a vengeance. I referred to it as acute. My thoughts now are that it was about that time that I stopped absorbing the Oxycontin. I increased my dosage from 20mg morning and night to 50mg three times a day. That was when we began to suspect something sinister hence, the current testing.

I once again phoned Shann as I began to think that, if I was right, 50mg patches would be far too strong. After all, maybe it was simply that the 20mg was not being absorbed, rather than a more serious problem.

Shann appeared not to understand my concerns and suggested I simply see my GP as soon as possible.

I changed GP's when my GP of 13 years standing told me that this cancer is going to kill me. I decided that I did not want to be treated by a practitioner that had given up HOPE, even if there was a chance that I had lost HOPE.

I felt I was on to something and phoned my daughter Megan to tell her that there was a huge ray of sunshine appearing on the horizon. Just a little chuffed that I had worked things out myself I was shocked when she said 'Mum, don't you remember what happened to me?'

Megs was given the same antibiotic and ended up in hospital. Seems like a check of the stool will determine if I require another course of antibiotics to fix the problem. Left untreated this condition can have dire consequences as nothing is absorbed [including the Oxycontin] Ouch!

In the meantime, I will have to discuss the problems with the Pharmacist when I go to pick up the prescription for the patches. Maybe I still require only 20mg of Oxycontin night and morning.

My rule is not to worry about how long I live, but to focus on how I live.

I intend to stay alive.. no overdose of Oxycontin for me.

Where to now?

I feel a definite need to return to these pages and continue my writing as my future is looking just a little uncertain at the moment.

A new lump, more in the chest wall than the breast, saw me make an appointment with the Radiation Oncologist rather than the General Practitioner. The decision was made with the knowledge that my GP could not request an MRI should it be necessary, and he would still receive a copy of the Report.

Dr Gupta [Radiation Oncologist] instead requested CT and Bone Scans. Although it turned out to be a bad decision on my part, I phoned my GP for the results. I was told that everything appeared to be OK however, he would run it by the Senior Practitioner [Dr Milton Sales] and would get back to me if necessary.

I heard nothing; it felt like a welcome reprieve. I was thrilled! Damian and Tyneal had driven almot 1000km from Melbourne to spend a few days. My 12 year old grandson Jascha had been with me for 2 weeks of the school holidays and he would be going home with them.

It came as a bit of a surprise to receive a phone call from the Mater Hospital at 3.30pm on Friday 22 January on to say that Dr Gupta wished to see me at 3.30pm on Friday 29th. A week is a long time in the life of an oncology patient waiting on results of imaging!

I must admit that I was probably more concerned that I had been kept waiting a week for the results than the results themselves. I was therefore a bit taken aback to see very clearly that there was, what appeared to be, a new soft tissue deposit in the area.

It was not surprising to find that Dr Gupta recommended MRI's of both Brachial Plexus and Cervical Spine. He also suggested a PET Scan. I asked for copies of the Reports and headed home to reflect on my diagnosis. Poor Haydn stays strong with all of this and continues to be an amazing support, although I think that he really feels that everything will be OK.

It was not until Saturday that I dragged Images and Reports from the back seat of the car and discovered that, in technical terms, the Bone Scan shows 'an avid focus of uptake is seen in the right side of the mandible - this is usualloy related to dental pathology. Occasionally metastatic disease can present in the mandible...'

From where I sit now it seems hard to believe that the GP could have thought there was nothing of significance. It certainly does not feel like that to me.

Then of course there is the fact that there was a message on our answering machine from Hunter Imaging stating that they had rescheduled appointments to treat my case as urgent.

I now have MRI's Monday and Tuesday next and PET Scan on Wednesday. I guess there will soon be a clear picture....

Today there was another phone call from the Mater saying that Dr Gupta wanted me to see Dr Tony Bonaventura [Medical Oncologist] on 26th February. Although I have not had chemotherapy, I had been seen by Dr Gupta's wife who is now on Maternity leave. I am happy with his choice as one of my friends from Group 33 [Breast Cancer Support Group] is a patient and she speaks very highly of him.

It would seem that I have achieved nothing by going through intensive radiotherapy. I am still on Oxycontin, although now it is three times per day, rather than twice. The pain is, at times, unbearable and I suffer from lethargy and fatigue and can no longer manage to run a household.

My conclusion. Cancer can be cruel. But then so too can the treatment

Where to Now?

I am finding life extremely difficult at the moment; miss you all so much as I search for answers. Rest is high on my list of priorities right now.

My pain levels increased over the weekend to the point that Haydn drove me to Greenhills shopping centre on Sunday afternoon to pick up a prescription for Endone. I knew that it could not wait until Tuesday when I was scheduled to keep an appointment with Nancy Evelyn herbalist extraordinaire.

I awoke at 1am Monday morning literally screaming in agony. At 8am I was on the phone to my doctor's surgery begging for an appointment. Haydn was happy to drive as there is no way that I was up to it. After 1 hour and 20 minutes I found myself pacing the floor as I waited for my 10.45am appointment.

Dr Mark Desouza was excellent. He asked about the steroid injection into the bursa that he had requested on my last visit and I said that there was a two week wait at Newcastle Radiology. I like to go to that particular practice as they bulk bill me as an oncology patient. Mark's concern was obvious; he immediately called Hunter Radiology, successfully arranging an afternoon appointment.

Dr Chan looked at the ultrasound, we had a lengthy discussion on the safety of injecting into my lymphoedema arm and I decided that it was worth it. I am aware that there are risks with taking the amount of Oxycontin that I consume each day and decided that I am damned if I do and damned if I don't. Anything to take away the pain.

I took the time on Sunday afternoon to e-mail Dr Fluhrer in Sydney, asking for his valued opinion. I am still waiting for a reply. He will charge $55 to my credit card when he eventually gets around to responding. In the meantime, I consider my situation is to be treated with the utmost urgency.

Thankfully I slept soundly on Monday night as was very excited to find that it was 5am when I awoke. Unfortunately, it did not last! Once again I was screaming and unable to function as the pain was debilitating. Haydn helped me pack a bag for hospital as I was convinced that was the only safe place for me. I have been going through this for the past 8 months and, at times, feel completely worn out.

My first appointment for the day was with my herbalist Nancy at Nancy Evelyn & Associates. I was a complete mess when I arrived. On looking into the iris she decided that there was inflammation above the elbow on the right arm and that there was little she could do for me. She suggested Bowen Therapy. Daphne Templeton, the resident Bowen Therapist had not arrived at the practice. Nancy phoned her home and explained the problem, Daphne was happy to come in immediately as she lived reasonably close.

Daphne suggested that my condition is a classic case of post mastectomy lymphoedema, made worse by the removal of a melanoma above the elbow on the same arm in 1996. There are pockets of lymph collecting in several places. She did amazing work! I could feel the lymph begin to flow although I found the treatment very painful. An appointment was made for Tuesday of next week and I was instructed to put washing crystals into a pillow case and wrap it around the area leaving it for two hours. I did that last night and eventually had to remove it as the drawing action was too intense for me to bear. Once off, I could not believe how wet it all was. No doubt it was very effective!

These two angels gave freely of their time; no charge for the consultations.

It was then off to the doctor. I explained about the pain that I had endured on waking and, once again he managed to get me an appointmen at Hunter Radiology for a CT Scan of the neck. I was to be there at 2pm. I have no strength in the middle three fingers of the right hand, also tingling and loss of sensation. Mark is thinking that it is possibly coming from the area in the neck between C6 and T2. Praying that the CT Scan will give some indication.

My medication was changed. I am now to take 40 mg Oxycontin night and morning with 10mg Oxynorm for breakthrough pain. This can be taken each two hours. All well and good. I may be pain free but can I function normally?

Today was a good day. I remained almost pain free and will ring first thing tomorrow morning to see Mark for the results of the CT Scan. Hopefully, we will know tomorrow where we go from here.

In the meantime, I had suggested to Nat - http://easygivingheart101.blogspot.com/ that I believed Jeremy had a message for me and was unable to get through the pain to give it to me. I was hoping it would come to her as they have done in the past.

I was excited to find in my Inbox this morning the following from Nat;

'The heart of the matter is that you have a Mother's heart. You feel that as a mother you have failed because you did not keep your son alive. Keep him safe; keep him well. You channel all your energy into elevating him, glorifying him. But he has been glorified. He has been exalted on high. You need only love and remember him, you do not have to carry him and lift him up. It is time to lift yourself.'

Nat went on to say that it is time to lift my own heart up. Time to live fully for myself. I did not lose half of myself when I lost my beloved son Jeremy.

I found the message very powerful. As you can imagine I am overjoyed that Jezz continues to get through to me in his loving way.

Know this has been long. I congratulate you if you have managed to get to the end. It is important for me to keep this as my own record especially as I am unable to write in my Diary currently with the problem with the nerves in my arm and hand.

Tomorrow, I will see Dr Desouza, yet again, for the results of the CT Scan. Praying that there is a simple solution, nothing more than a bereaved mother that bottled her grief to the point that the pain was expressed physically. I am asking for a miracle!

Please pray for me and may your days be filled with love, light and laughter.

It would also be useful if someone could help me with formatting. How do I manage to get double spacing when the Post is published? I do double spacing, always in the draft, and yet it is all bunched up and difficult to read when published. Help! Please...

One Step Foreward

Guess it is about three weeks since I gave up my regular habit of being on the computer blogging, lighting candles on Memory-of sites and emailing near and distant friends. It was August 2008 that the debilitating pain in my right shoulder and arm began. I have been taking Oxycontin and Endone since the beginning of January. There is never a time that I am completely pain free.

An ultrasound yesterday confirmed that I do have very pronounced bursitis of the right shoulder. It seems that there could be another problem as it appears that the tingling and numbness in the three middle fingers of that hand is not related to the bursitis.

I will be seeing my doctor on Thursday for confirmation and treatment options. The length of time taken to diagnose the problem could, in fact, mean that choices for treatment are limited. Too late for simple steps like rest ice and elevation although I have been doing that for the past three weeks.

An injection of coirticosteroid drugs into the bursa, under ultrasound is often recommended. Given that I have lymphoedema in that arm there are risks involved with needles into the lymphoedema arm. At the time of the mastectomy the instructions were very clear. Any activity that involves the risk of broken skin leading to infection and possible cellulitis is to be avoided.

Yesterday while waiting in the doctor's rooms I sat next to a patient that was coughing and spluttering. I immediately thought of whooping cough - without the whoop, or even pneumonia. After dinner I became aware that I had a sore throat. Being me, I decided to gargle with my Miracle Mineral Solution (MMS) and even took a dose, not taking into account that it could see the morphine in my body as a foreign substance and knock it right out. That done, I found myself in extreme pain, which is not being controlled by the 20mg of Oxycontin which I currently take night and morning.

A very valuable lesson; I am paying the price.

A Tough Lesson

Hello all

I find that I am nowhere near resuming normal activities, even after 2 weeks of being a 'lounge lizard.' The doctors are still looking for the cause while I continue to seek outside help with alternate therapies.

Being on the computer is agonising however, I felt that I really wanted to share with you the following which I have taken from the book 'Extraordinary Healing' by Art Brownstein MD. I am testing the theory.

I quote: 'Pain, particularly of a chronic nature, often carries with it deeper messages than merely indicating that something is wrong in your body. Although pain can be a living hell, it can also be a great teacher and a blessing in disguise. Pain opens us up, broadens our horizons, enlarges our perspectives, expands our minds, makes us more tolerant, teaches us patience and endurance, and toughens our spirits and moral fiber. Pain teaches us compassion and understanding and teaches us to become better people. After you've been through pain and you've survived the sheer brutality of its force and power, you'll never take anything in life for granted again. As gold is purified by superheating, so too the hell fires of pain can purify your soul and make you a better, stronger, more caring person.

No matter how long it has lasted, pain in always temporary. Once you have learned its deeper lesson, the pain will be released from your body and you will be free from its tyranny.'

I am waiting patiently to be released from this, often unbearable, pain and look forward to being on top of life once again.

Until then, know that I love you and miss everything about the amazing friendships that I have formed since beginning this journey