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.
Friday, August 27, 2010
Thursday, August 26, 2010
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.
Sunday, August 22, 2010
Although I am unsure of the day, month or year I do remember the circumstances that left me asking the question 'What is a Blog?'
Vacuum cleaner in hand, preparing to flick the switch and begin the process, I found myself edging closer to the radio to adjust the volume. So what was it that I found so interesting? At that time I learned of the death of the oldest known blogger in the world. I am unsure why this news item was of interest to me. Anyway, I began to ask 'What is a blog?'
Deciding that my long standing friends at Aiello Computers would lead me in the right direction I made the time to visit. Of course, a computer related visit also gives me the perfect opportunity for a chat with beautiful wife Kim. I asked Lillo to tell me about blogging. From memory, Lillo being the true professional, did not leave me feeling like an absolute novice. Not knowing the questions to ask as I was charting 'new' waters, it suited me to let Lillo do the talking. Using a notebook and wireless connection means that my local telco does not do me any favours. There can be problems with usage and pricing. Lillo did tell me that a good starting place would be with my ISP so I set about searching for information that would enable me to compile my very first post on my 'new blog' with Bigpond BigBlog. I named it Lessons4Living. This blog gave me a deep sense of satisfaction as I found myself forming friendships that I would not have envisaged. Thanks to Starry, Mandy, Bev and Ponderosa, I was hooked.
At the end of 2008 there were difficulties with both Posting and Commenting. I realised that my readers were limited to fellow Australian BigBloggers. Having set up a memorial website for Jeremy I had overseas friends interested in reading my ramblings.
Thankfully, I learned of Blogger which has presented both highs and lows as I battle the pain and effects of medications and treatments. It is, therefore necessary to visit Lillo and Kim once again. This time my enquiry will be for a new laptop. It is definitely time for Skype and voice activation software that will enable me to continue my weblog without the frustration of having to type with only one or two fingers of my left hand. The very fact that a much higher level of concentration is involved leaves me feeling quite fatigued at times.
Any suggestions of new technology that would enable me to write more, with less effort, would be most welcome. I love the opportunity to read and learn from the blogs I follow around the world. There are times when I feel I am right there with you. Maybe some sort of new technology will allow us to share a coffee together. Now that would be something...
Live life, laugh and love always.
Thursday, August 19, 2010
There have been some highlights at the farm, with the arrival of nine calves recently. This is our new 'baby.' It is fascinating to observe animals in nature. The calf knows instinctively to belt the mother's udder with its head to let down the milk. The cows that have given birth are only heifers themselves, meaning this is their first calf, and yet they make great mothers. As soon as we pulled up in the ute, the cow edged away with the calf. This was mainly due to MY presence; they are used to Haydn, but not me.
My week has been less than pleasant as I struggled with laryngitis and the accompanying sore throat. It has been going on far too long! I missed both my Tai Chi and yoga classes and have been unable to make phone contact with friends, causing me chronic withdrawal symptoms. Why is it the words 'This is the day that the Lord has made, we will rejoice and be glad in it...' pop into my head? There has to be a message there somewhere.
Today, we used the last of the fruit and vegetables so shopping has become a high priority. Only problem is my complete lack of pizazz. I can only guess that it is somehow related to the energy being used to fight this 'bug.' But then again..it could somehow be related to the boredom of being here for a week with no contact with friends or neighbours (present cyber friends excluded.) Truthfully, I have hardly had the fortitude to turn on the computer.
In the meantime, I have found the burning, stinging, pain and irritation in the right arm to cause me a great deal of angst. I do not often ask 'Why me?' but somehow I have found myself to be having the occasional 'pity party for one' in spite of the fact that they are not much fun. Knowing that I have made little time for lymphatic drainage and exercise exacerbates the problems. I really do know better.
I had been looking forward to the opportunity of a luncheon tomorrow. My friend Sue, owner of Cabins in the Clouds, is hosting a get together in readiness for a Breast Cancer Fundraiser to be held in October. As Sue is appearing in a local GAPS stage presentation next month, the last thing I want is to inflict her with whatever it is I have. In actual fact, she found herself with a similar problem after the Christmas Carols last December; it took her some time to fully recover.
So, tomorrow can only get better. I pray for increased energy and healing for myself and all my friends that deal with adversity in its various forms.
May our lives be blessed....
Friday, August 13, 2010
Yesterday was a LONG day!
We left the farm at 7.30am and although we were home about 6pm we did not stop all day.
I wonder if we were not putting the place on the market how long we would have gone without towel racks, toilet roll holders etc in the bathrooms? We did learn that this situation is more common than we would have thought possible. Then, of course, Haydn decided that we should not purchase 'top of the range' accessories. Non essential in his opinion. Oh well! Provided they do the job, I will live with that.
The choice was influenced somewhat by the complete lack of customer service in the first store. The sales assistant actually picked up the phone and made, what appeared to be, a somewhat personal telephone call in our presence. She completely ignored us. Definitely no reason to shop at that particular branch of Reece Plumbing.
Haydn suggested lunch. I thought that was a great idea as there would then be less pressure on me to provide a substantial dinner on our arrival home.
We managed to purchase beer plus fruit and vegetables for Haydn's elderly mother-in-law from his first marriage. Dot is 92 and still lives alone. As she enjoys her beer and wine, we provide it for her, in the belief that it makes her life just a little easier.
I managed to fit in a Bowen Therapy treatment, which I have found to be the best form of lymphatic drainage for my particular problem. Haydn had a stress ECG because his doctor had suggested it. Although Haydn appears to be fit and well his cholesterol is slightly elevated and his father died of a heart attack when in his 40's. Results when he next sees his family doctor.
Food shopping [enough to last for a week] was done on the way home. It was an easy dinner for us followed by a reasonably early night. Funny how unaccustomed we now are to a full day on the road and shopping.
This morning we began the day with a 'cook-up.' Firstly, it was an enormous stock pot of chicken noodle soup and then our favourite chicken breasts cooked in the slow cooker. A recipe straight from 'My Slow Cooker' recipes on Facebook. We have managed to eat fairly well during the winter months thanks to the slow cooker. With my not being able to manage to chop vegetables these days, it suits us both to do the preparation for the main meal in the morning. We then have only vegetables to do at night, enabling us to still eat reasonably well.
I must admit, I am feeling more tired than usual today. It has taken me longer than normal to get going and I have more to do, knowing that the farm will go on the market. Oh well! I can cope with the inspections.
Thanks for visiting. It is amazing how I now manage to type the entries with one finger of one hand while watching television. Tonight it is Waking the Dead on the ABC.
Friday, August 6, 2010
True to his word, Haydn contacted two real estate agents and asked for appraisals. Both turned out to be female. Why am I telling you this? Maybe it had something to do with the outcomes. Maybe not. The interesting thing is that neither of them spent too much time inspecting the property, although there was a consensus that the views will sell the property.
On arrival, the first agent spent some time with Haydn while he explained the reason behind his decision to consider selling the farm. Perhaps it was our circumstances that put her in her 'comfort zone.' She spoke at length about her own father who is 59 and has, unfortunately, been given a very bad prognosis regarding his own cancer diagnosis. Family members are all very distressed about the pain and suffering that plagues him and also the abdominal bloating. It appears that his Medical Practitioner has done very little to relieve the symptoms. We were able to suggest the possibility of Ascites Fluid and to steer her back to the doctor in the hope he would provide suitable treatment.
I explained to agent 1 that I was being cared for by the Palliative Care team. I cannot imagine my life without them. Armed with an arsenal of cancer related information she departed, promising to make contact later in the week.
We sat over a pot of tea with agent 2 and discussed all sorts of things; not a lot of time being devoted to the property. She did say that she had visions of it being used as a B & B, or a place for healing. I agreed. It has always been my vision to have cabins being used by those seeking a peaceful environment, either during or after treatment. Knowing that is not to be, it would give me great joy to see it being used for such a purpose by a prospective buyer.
Humbled to learn from agent 2 that she found herself inspired by my story I replied that I did not fully understand what she meant and asked her to please explain. Her reply touched me deeply. She simply said 'I see you as a channel for grace.'
A phone call later in the week from agent 1. Her Dad has now been treated for his Ascites fluid (Yes! We guessed it!) and he has been referred to Palliative Care. She asked if we had made any decisions regarding the sale of the property and said that no matter what she would like to keep in touch.
Once again, I can only think that we have been blessed.
Tuesday, August 3, 2010
A big 'Thank You' for your response to my previous post. Definitely a case of 'a problem shared is a problem halved.' I remember being told as a Social Science student that my talking was my thinking. I suppose that I have simply replaced the 'talking' with 'blogging.' What a difference a week makes!
Last week I had an appointment at the John Hunter Hospital Physical Therapies department. I was under the impression that it was for assessment by the Occupational Therapist. I was not quite right! In actual fact I saw Jeanette, and whether she was a physio or OT is irrelevant. Together, we went through some testing to see exactly where I stood with my right hand. On a scale of 0 - 5 [5 being the best] I was 5 in some areas. Unfortunately, when I was bad I was very, very bad. There is absolutely NO strength in the grip of my right hand. My index finger is almost straight, with absolutely no bend. My little finger bends spontaneously and is almost impossible to straighten. The idea is to use exercise in the hope that I may eventually regain some use as the nerves regenerate. Apparently this happens at approximately 1millimetre per day [I think that is the figure] What I do know is that there are lots of millimetres in the length of my arm.
Jeanette shared with me that her first thoughts, on reading the referral from the doctor were that, 'this is not good.' When I walked in that changed to, 'this is not to bad.' Saying goodbye, she was convinced that there was 'HOPE.' I will hold onto that! How I would love to 'once again' be able to touch type and even to write again, using my right hand. I do not make a good left hander.
Had an enjoyable lunch on Saturday with Group 33, which is the Breast Cancer Support Group that I have the honour and privilege to share my journey with. Not sure when I bought my digital camera but I have faithfully taken photos at each of our monthly luncheons. Unfortunately, the girls had never been given copies of the prints. On Saturday the situation was rectified when I handed out dozens of prints to the 12 in attendance. Problem was that I left in a hurry as Haydn was waiting and I did not get to take photographs on the day. I believe it will be the first luncheon that no pics were taken. Such a shame as we had lots of laughs as we noted the changes with individuals always at a different stage with hairstyles. No doubt, chemo and radiotherapy show up in the hair.
I had also purchased cute, pink, knitted bears with the breast cancer ribbon attached. These I handed out, and it was decided we would use them as Christmas tree decorations. There was only one problem! I did not have one for myself, so cannot even show you how cute they are. Hoping to be able to order another one for me.
The other thing that is of interest to me at the moment is the possible use of using hyperbaric chamber therapy. The problem being that I have absolutely no idea where this thought came from. Or indeed, how I go about getting my doctor to warm to the idea. As with all things cancer, I like to have the blessing of the doctors on my 'team.' I suspect I have heard somewhere of the benefits of using it in some way as a cancer therapy and also for radiation burns along with lymphoedema. Now, doesn't that sound interesting?
Have just put the last log on the fire for the night, and finished a ginger tea. Guess it is time to say 'goodnight' one and all.
Love and gratitude