My Breast Cancer Recurrence

Although not a particularly clear picture, it does give some idea of the recurrence of my breast cancer in the soft tissue surrounding the clavicle.

'Medicine sometimes snatches away health, sometimes gives it.'

Ovid Quote [Ancient Roman classical Poet and Author of Metamorphoses, 43BC-17]

Although this entry is about the reason for my absence on these pages, it is also a platform for me to give thanks to those that have taken the time to contact me voicing concern at my absence. I am amazed that so many have emailed me personally, enquiring after my well being. I am indebted to you for the gift of your friendship.  Please let me say that you have become more like 'family' than my own.

To be perfectly honest, I am not really sure why it has taken me so long to organise myself to do what I love most; that is to blog. We did manage to do a road trip to Victoria for which I am very grateful. I succeeded in spending time with each of my three children and their families. On our return, I decided to act on my concerns, making an urgent appointment to see my doctor. He agreed that immediate action was necessary. The lesion on my clavicle, growing rapidly and causing the area surrounding it to become very inflamed, required treatment.

My appointment with my Radiation Oncologist did not go particularly well. I asked him if what I was looking at could have been caused by the radiation given to treat my cancer. He avoided my eyes and denied that was the reason, although his silence told me all I needed to know.

I then saw my Medical Oncologist who, once again, proved himself to be 'my kind' of doctor. He explained that what he was looking at appeared to be breast cancer recurrence in the soft tissue. He said it is not uncommon, and, although it is not usually fatal, complications can kill. Chemotherapy is not given routinely as it is not effective. Dr Van has requested another CT scan prior to seeing him on 19 May. I must admit to being slightly concerned about radiation given the number of scans undertaken over the past 5 years. My last one was in January.

Tonight I decided to seek information on possible cause and treatment of cancer recurrence in the soft tissue. I was not surprised to find that on one of the reliable Cancer Council websites, radiation given to treat breast cancer has shown to be a possible cause of recurrence in soft tissue. Naturally, the risks are greater the higher the doses of radiation given, and I was given what was considered to be the highest [safe] dose.

Where to from here? I have no idea really...

Dastardly December Decisions

'Have faith in your dreams and someday your rainbow will come smiling through. No matter how your heart is grieving, if you keep believing, the dream that you wish will come true.' - Author Unknown

The process of grief is multifaceted. According to Barbato and Irwin 1992 grief is fundamentally an emotional response to loss, the expression of which can include, sadness, sorrow, fatigue, depression, anger, guilt, anxiety. The list goes on! Although I feel that I have managed to avoid many of these symptoms it would seem that, intermingled with similar after-effects of Breast Cancer, I may not be the person I think I am . Much has been written about the effects of both grief and breast cancer/cancer on relationships. We know that many do not survive. I had considered myself to be one of the lucky ones.

It is now 5 years since my surgery. I am just one year into my treatment with Femara; 4 to go! God willing! It is nothing short of a miracle that I am still here. Somewhere along the way it appears that I have lost myself. According to Haydn I have not recognised the loss. Although I consciously grieve for the many losses in my life, I had not been aware that I might also be grieving for the loss of self. Haydn is struggling with the person I have become while I would have said he did not even notice. He simply gets on with his life. I understand Haydn's frustrations. After all, he is my ex-husband; I know him well. We have been together 14 years. Although we separated, later divorcing, we have never been apart. I simply moved out, taking Jeremy with me. This I did to protect myself and my child. We continued to fraternise.

I have noticed for some time that the relationship has become strained. I am used to Haydn and his need to retreat into his 'cave' at the appropriate times. It is his 'thinking' time. I was quite unprepared for the outcome this time. For the first time he laid his cards on the table with complete honesty. I appreciate that. Many things were said. It is not my intention to go into them here other than to say that it has given me plenty to think about.

Each time I go to discuss the situation I burst into tears. He then says it would have been better to say nothing as he cannot handle my tears. I reassure him that tears are good and I wish I had cried more as they are a great emotional release. There is no shame for him to admit that he feels let down by what has happened in his life and wants to 'grab' life and run with it. Strange, I feel exactly the same way. The question is 'Can we do it together?'

Haydn feels he is 'missing out' while I see him as 'living his dream.' He loves the farm. Being out in the paddocks, on his tractor, or with his cattle is what he loves to do. He has the freedom to hop in his vehicle and go wherever his heart takes him. His family are close by; he can see them whenever he chooses. There are things in our relationship Hayd finds difficult. At just 63 he has much to look forward to. With the 'right' partner, in good health, life could be good for him.

On the other hand, I rely on him to take me to appointments. I miss out on so much rather than ask him to give up his time. I miss my family and my friends. I love my cyber friends who fill a HUGE void however, I miss personal contact. I feel the need to find my passion! I am no longer interested in 'housekeeping' and the fatigue prevents me from participating in many activities.

It is interesting to note that Haydn does not share the same point view. I am grateful to him for his honesty and have explained that this is like a game of 'hot potato.' The 'hot potato' is in my hands and it is now up to me to decide what to do with it. My feelings are that this is something I need to 'hang onto' until the New Year, providing I don't get burnt.

At the end of the day it takes two very special people to survive all that we have experienced in our lives. Simply put, maybe we are not the people we thought we were.

I think I will have a look at the movie EAT PRAY LOVE. There may be something there for me.

Wondering What to do Now

I cannot help but wonder what is going on in this 62 year old body of mine. It will be four years next month since Jeremy's accident; Haydn did not expect me to see the first year out. Why would he say that? There is no doubt that he knew, better than most, the affect on me of the loss of my youngest child. The pain was simply 'different' because he was my youngest not 'better' or 'worse' than for any of my beloved children. Jeremy had not chosen a life partner, unlike Damian, Megan and Carla. He was 'my baby' just as Ray was to his Mum.

So, there is no doubt in my mind that stress was a contributing factor in my breast cancer recurrence, leading to metastatic infiltration of the right thoracic nerve outlet. Was my pain not great enough? I believed my Radiation Oncologist when he told me that the radiation would relieve the pain, and 'cure' the cancer, whatever that means. And it did! But only for one month. I have no idea why it was not longer. I did find the side affects from Arimidex unbearable and was relieved to be told to stop taking it. Within a few days the pain returned; I have written about that and that is not really what this post is about. Actually, I do not know what this post is about. It is simply my confused mind!

I had previously booked tickets on a flight to Melbourne, and then felt the need to cancel. Haydn and I were to visit my family. Both Damian and Megan live in Victoria and I see them far too infrequently. I was looking forward to spending time with them. When Dr Sales referred me for another Doppler, due to his concerns about the extent of the blood clot in my right arm and neck, I realised that I would be putting myself at risk. I was also trying to deal with the feelings of lethargy and general malaise which, according to About.com is a non-specific symptom associated with nearly all infectious, metabolic or systemic diseases. Depending on the disease, malaise can develop quickly or slowly. I have no idea if my problems are due to my cancer, or the medications that keep me relatively pain free and, more importantly, alive. Or, so I am led to believe!

I know that my problems are not helped by my restrictions with food preparation. I rely on Haydn to help me in the kitchen. And then there is the banana toffee loaf that Haydn's daughter Alex makes for me ,and the delicious sticky date cookies that we purchase at Coles when we do our weekly shopping.

So, on one hand, I am exercising, meditating and eating relatively healthy, albeit simple food while, on the other, I console myself with a piece of cake, or a cookie as I drink my herbal teas.

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.