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.

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....

Is the End Near? Or is it my Perception?

‘It is one of the commonest of mistakes to consider that the limit of our power of perception is also the limit of all there is to perceive’ – CW Leadbeater

It has become apparent of late that keeping a train of thought going long enough to do a Post is quite difficult. No excuses! It is just the way it is. There is so much I would like to do with these Posts and yet it simply does not 'come together' for me. 

Last weekend I purchased a new notebook computer, along with Dragon Naturally Speaking Voice Recognition Software, that will, hopefully, allow me to communicate with some ease. Laurice and Claire have a friend/worklmate that is going to help me with transferring files. I am excited at the prospect!

My concerns have not changed of late; the fatigue being my greatest hurdle. I ask myself 'Is it the Femara, along with other medications, or is it the natural progression of the disease?

In a telephone conversation yesterday, I spoke with my very dear friend Sonya. 'Sonne' has been an absolute 'rock' since we met just three and one half years ago as newly bereaved parents. As we were saying our goodbyes I had this fleeting thought that my time could be running out. Not wanting to 'give in' too early I have spent the greater part of today getting my focus back to 'living.'

I have the belief that we are often given some signs so it seems my patience will be tested as I 'play the waiting game.' This is not intended to be a unenthusiastic post about my life, it is simply my thoughts. These words are  for my pleasure, your enjoyment and the benefit of future generations that have not 'known' me in my lifetime.

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!

To the Point!

Thank you for your comments which mean so much to me. Recently I have dropped behind with my replies and, God willing, I will manage to get caught up. Please don't hold your breath, just in case! I can promise I will do my best.

The popular conception of therapy usually goes something along the lines of client, couch and therapist, coupled with a notepad and talk. Yesterday went well! Jeremy's birthday passed smoothly! Many candles were lit on his Memory-of site and I received countless personal messages, giving me a sense of being personally blessed.  This led me to Google 'Group Therapy.' According to Georgetown University Counseling and Psychiatric services, Group Therapy is a powerful venue for growth and change.The isolation of farm life, along with a degree of disability, gives me more time to think than I would like. Definitely, time to grow and time to change! Therefore, being part of a group allows me to connect with others in a similar situation. Although the circumstances of my breast cancer recurrence appear to be somewhat unique, the blogging community provides a safe forum, along with emotional support, in my daily battle. Social Networking also gives me access to a large diverse group of individuals offering warmth and providing support. This is the perfect forum to say a huge 'Thank You.'

Dr Sales yesterday checked both the rash on my eyelid and the mark on my jaw line. Thankfully, neither is cause for concern. The rash is a scratch that has become slightly infected while the spot is a skin cancer but...NOT A MELANOMA! I have always used Curaderm for Basal Cell Carcinoma treatment so will probably do the same with this one. He was however, concerned about my current level of  fatigue, as well as the results from the Doppler ultrasound, which showed a complete obstruction of the subclavian and axillary veins indicating extensive post treatment changes within the soft tissue of the right axilla.

I have an appointment with my radiation oncologist on Friday. Dr Sales has suggested I may need further testing. I am normally reluctant to undergo testing unless the symptoms suggest there is some sort of activity. I feel testing is essential at this stage, in spite of my belief that testing increases risks.. The problem could be radiation damage, tumour growth or very extensive blood clotting. Whatever it is, it is a cause for concern.

The one thing I have noticed is that when I feel well in myself I worry less about outcomes. I let my body be the barometer of the soul. As I have been feeling 'out of sorts' as well as fatigued I am 'looking for trouble.' Not a good thing!

On a lighter note, today I had a manicure and pedicure done. Not being able to do my own has become a nightmare. The nails on my right hand often look like 'claws.' I have only just located Tracey, offering a mobile service. In spite of giving explicit instructions about care being taken with cuticles etc I have been left with red, inflamed toes. I think rather than 'pushing' the cuticles back, they were 'shoved.' As you can imagine, I have been applying Tea Tree Oil all afternoon in the hope of reducing the risk of infection. Drat! There has to be a better way!

‘We cannot tell the exact moment a friendship is formed; as in filling a vessel drop by drop, there is at last a drop which makes it run over; so in a series of kindnesses, there is at last one that makes the heart run over’. Author unknown

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.

Get me Outta Here..... Please?

Although it was my intention to continue on from the previous post it has not happened. That will come later.

Why is it that for the past two to three weeks I have felt like I need to be scraped from the bottom of the bird cage?

My last consultation with Dr Sales was pretty much routine. The feelings of wellness did not last long. I found myself feeling tired and lethargic within days; maybe even a little sad on occasions. Putting those feelings aside, I readily agreed to book flights to go to Melbourne to visit my children. I had been happy to forego my trip to Floriade to spend time with family. Knowing that 22nd October is Damian and Tyneal's first wedding anniversary I went ahead and booked tickets for myself and Haydn to depart on Thursday 21st. I was excited! It has been far too long since I have spent time Damian, Megan or Carla and respective families/grandchildren. Two days later I experienced a major hiccup with bleeding from where the sun doesn't shine. Being on blood thinning medications adds to the problem. By Wednesday I realised that I simply did not have the energy for the flight and the driving the trip would entail.

I became very emotional. Knowing that crying was not going to achieve anything I picked up the phone to call Damian. I had offered to stay with Jascha, allowing Damian the freedom to do something special with Tyneal. Why I was being such a sook? I had no idea! I have always felt I had a strong constitution. Not any more! Although I started off crying, Damian soon had me laughing with his suggestion of wearing adult diapers and travelling anyway. At the end of our conversation he had allowed me to be convinced that my health must be the priority. They would simply make other arrangements for Jascha. Thank you Damian. You always manage to bring things back to an even keel.

Knowing that I have been feeling rather tired, and sad, I feel it is time to address all issues that may be contributing to my current crisis. The isolation at the farm is probably number one. Femara is right up there as the joint swelling and pain seems to be getting progressively worse. On reading Dr Aaaron Tabor's latest blog entry I became aware that having physical limitations as a result of breast cancer treatment increases my risk of death due to any cause by 40%. I rather think that whether the cause is the cancer, or the treatment, it is something else to overcome. I want so much to blog regularly, as well as keep in touch via email, with my favourite people, and I struggle to do that now as a one or two finger typist. Then of course, there is always the loss of a child. Although it will be four years next month since Jeremy's accident, the pain remains. I am fatigued and yet I cannot help but ask 'Is there something else going on?'

So back to today. Reflecting on all of this, I realise that it is necessary to make a decision; time to put a plan in place. Mentally, I have made a decision that I can live with and feel at peace with myself. Now it is time to hasten slowly.

'Self Imposed' Exile Over

Today my life changed! After 12 months of a 'self imposed' exile I DROVE MYSELF to East Maitland. Alleluia!

There were several contributing factors that saw me give up my right to share the roadway with fellow drivers. There was the tragic motor vehicle accident that took my much loved youngest son and saw him join his beloved Dad in Eternal Life. Then there was the fatigue that plagued me since the completion of radiotherapy in June 2009. Thrown into the mix was the dreadful pain, and prescribed opiates and other medications, to control it. As a result of the Metastic Breast Ca in the Brachial Plexus, I no longer had control of my dominant right arm/hand. We also upgraded our motor vehicle to a 4WD, which seemed to me to be bigger over all.

So I sat at home on the farm alone and lonely, except for the days that I attended yoga and Tai Chi. That is until today! Two beautiful friends, Sonya and Glenys, were heading this way for an appointment. They suggested it would be a perfect opportunity for us to get together for lunch. I even tried to renege on the deal last night, but, thankfully, Haydn refused to be a party to my insecurities and lack of confidence. He reminded me that my journey today was only 4 times to the village of Gresford and return. That's one way of putting things into perspective!

So, I did it! After saying a prayer to Saint Christopher, and asking the Lord to protect me and other road users, I headed off. It was a delightful day of perfect spring weather. My time spent with 2 very special friends has put me into a new place. I feel I have regained a level of independence not seen for 18 months.

Still Recovering

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.