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!

Yesterday's Appointments

Although I commenced my working life as a dental nurse, the fear of dentists, instilled in me as a child, has stayed with me. My Mother's aversion to dentists so strong that she had her own teeth replaced with dentures as a 17 year old. I have spent many hours, and lots of dollars trying to keep my own teeth. The fact that I have numerous crowns, plus a bridge, still count towards my own teeth. Rather than drive the 180 kilometre round trip to see my regular dentist, I was pleasantly surprised to find a young female dentist in this area. Dr Khan gives painless injections, and appears to have an amazing ability to find decay when there is nothing obvious. This was the case when I visited recently believing that the grape seed that managed to wedge itself into a tooth was actually a cavity. As it turned out, apparently it was stuck in a most unusual and intricate bridge. One that had originally been done in Singapore in the 70's. What she did find however, was decay in the tooth beside it.

Today's visit was to have the tooth filled. I remembered to have her note that I am taking blood thinning medications. We discussed the situation, with me explaining to her that I may well be on it for the rest of my life. Dr Khan reminded me that it is important to have my INR levels checked prior to any dental work being done. It seems that even large fillings can lead to excessive bleeding; something definitely worth remembering. She also pointed out that the dry mouth I have from the medications also puts me into the high risk category for new decay. Just what I needed to hear in my twilight years.

Next stop Calvary Mater Hospital Oncology department for a routine check-up. Dr Lombard, my regular Medical Oncologist, is on maternity leave at this time. In her absence I have been seeing her registrar, however, today it was Dr Turner, another young female doctor . The first thing she did was to compare the two PET Scans. My original and base scan, done in February and the second in July. Once again, she explained that she does not like to get patients hopes up but the improvement is absolutely amazing. I did not feel the need to explain that I am also taking a supplement used to balance hormones in post menopausal women. I will never know for sure if the results would have been as good without them and I am not about to find out. While ever I can afford them, I will continue to take them.

My regular doctor had suggested that I ask about the benefit of taking some form of blood thinning medication for life given that my current blood clot is extensive, going almost the full length of my right arm. As is my practice, I mentioned my concerns with taking Femara due to the risk of blood clotting. She immediately said that taking Femara is not an issue, it is Tamoxifen that can cause blood clots. My dilemma then was whether I should refute her statement. I stumbled to find a way to say that the leaflet enclosed with the Femara gives the warning signs of blood clots and states that if, as a patient, you suspect a problem then you should present immediately to your nearest Emergency Department. Dr Turner then asked me to be patient while she did further research. She found the information and agreed that there is indeed a slight risk. As I have said before, the fact that it is in less than 1.2% of the population means nothing if you happen to come into that group.

She then went on to say that there was a single study indicating that there could actually be a benefit for cancer patients having daily Clexane injections rather than taking warfarin tablets. I was surprised to hear that approximately 30% of cancer patients at the Mater require blood thinning medication. Seems I am only now learning that as a result of having active cancer I will always be at risk of blood clots.

Into the mixing pot I add my daily dose of Femara and Epilim; it is no wonder I have concerns.
Apart from the odd lapse, I endeavour to make the most of each day, remaining confident, and optimistic, that 'things do work out best for people who make the best of the way things work out.'

My Friend V

Ring...ring.

It is rare for our telephone to ring after 7.30pm, so there was a surprise element when Haydn answered it last night. I was even more taken aback to be told that it was for me. The voice was that of V from Group 33 [Breast Cancer Support Group] who sounded different, somehow. Group members are familiar with V's antics. In many ways she is very much the leader in our special group of caring friends. In my effort to protect my right arm I invariably end up being thumped by V in some way during our get togethers. It is her way of making a point; I have not yet learned how to avoid it.

Carol, the Breast Care Nurse at the Mater hospital acted as facilitator for the group, which began meeting early 2006. The time spent was enjoyable; it seems we all looked forward to the 2 hours we were together each fortnight. We were given every opportunity to learn about various services offered post surgery and treatment. Some group members were in the midst of either chemotherapy or radiotherapy at that time. It is always interesting to note just how far individual members have come on their journey. Appearance is not the only thing to change.

Although at times it appeared that I had not remembered each group member's name, I was acutely aware of V. How could I not help but feel her pain when she shared with the group that her husband was diagnosed with prostate cancer; and they underwent treatment around the same time. I still remember how I felt on hearing this news. And then there was the luncheon held at the farm early in 2010 when she was sprouting the fact that she was wearing a G-string.

At the last luncheon V discussed with us that she had been tested for the BRCA gene. Her doctor, Professor Forbes having made the recommendation knowing that V's sister has been under going treatment for multiple cancers over many years. Her niece [sister's daughter] has recently completed her treatment for cervical cancer. There appears to be a very definite family history. This is not the case in my family.

V's call was one that she was reluctant to make, having been given the news that she has an aggressive form of the BRCA2 gene. The prognosis was definitely not what she wanted to hear. The recommendation is for her to undergo prophylactic surgery and treatment. Professor Forbes has recommended a minimum of 5 years of uninterrupted Femara which is an Aromatose Inhibitor and used for hormone positive cancers. V is aware that I am currently taking this particular drug; it seemed natural for her to talk to me about her own situation.

What could I say knowing that I currently have a blood clot almost the full length of my right arm? One of the less commonly reported side effects is blood clotting but we never know which of us will be in that group. Seems this particular drug also puts me at risk of other cancers, stroke and heart attack. There is every chance I'll be dammed if I do and dammed if I don't.

On a more positive note, I was able to lead V in the general direction of a fellow blogger; Breast Cancer: Fight now by Dr Aaron Tabor. As luck would have it, his last Post was on the subject of the BRCA gene.

In the meantime I will be keeping V in my prayers. She has three beautiful daughters who will also be looking to undergo testing.

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.