Sunday, October 23, 2011

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 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.

Monday, October 10, 2011

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.