Saturday, August 27, 2011

Remember Me

'Remember me in the family tree
My name, my days, my strife;
Then I'll ride upon the wings of time
And live an endless life.'
- Linda Goetsch

In a conversation with my daughter M recently I was reminded of what I see as the importance of what I do. My 14 year old Granddaughter had asked her Mother about coming to visit. Being aware of my current circumstances, T had asked about them coming to stay at the farm. She pointed out to her Mum that she was afraid I would be gone before she really got to know me. I felt truly blessed to be told that my caring, delightful 14 y.o. Granddaughter really wanted to spend more time getting to know me. Is it only distance that separates us, or is it possible to live in close proximity and still not know someone?

It is a set of circumstances that has kept us apart over recent years. My daughter has been undergoing chemotherapy, plus being fed another dreadful drug for a condition that is not cancer related. While I have been enduring side effects of illness, and treatment, daughter M has had a dreadful time with no family support at all. It has amazed me that, as a single Mum with three children, she has continued to put one foot in front of the other in order to get through the days, in spite of regular hospital admissions and every conceivable side effect. Having endured treatment, she now has to live with unimaginable pain, as a result of rheumatoid arthritis - a side effect of treatment. Unfortunately, she was not informed of the potential for anything like that, so she does not know if she would have continued treatment, given all the facts.

Over recent weeks Haydn and I have been planning a road trip to Victoria [health permitting] to spend time with my family. In the meantime, I have made the decision to stop spending time shredding personal papers. Beautiful cards written so lovingly, bundled in ribbon, along with many years of personal letters and journals, will all be left here for family members to read if they so desire. After all, if my family feel they do not know me, they can get to know me through others eyes, through reading all that has been written over the years. I have always been an avid letter writer.

Of course, that also includes my blog which, I trust, will be like the indelible influence of a loving grandmother. I explained to my daughter that information missing now, will surely be highlighted in both my writing, and the thoughts of others, who have so lovingly taken the time to send me such beautiful cards as well as to correspond over the years.

On that glorious day when we are united as family in Eternity we will already have made our acquaintance.

Tuesday, August 23, 2011

Thank You for Holding my Hand

'When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.'
- Henri Nouwen

I have chosen this quote simply because it expresses how I feel 'at this time.' To those of you who hold my hand on this journey, you have my love and gratitude. I have learnt that it requires sensitivity and caring and is certainly your gift to me. Advice can serve no purpose at this time.

Today began with my monthly doctor's appointment. Yet again I left the Practice giving thanks for the day that Dr S became my Medical Practitioner. I could feel the sadness in him as he went about filling in forms that will allow free access to physiotherapy treatments for lymphatic drainage and also a request for ongoing Psycho Oncology services with Cath.  Dr S's facial expression, when he checked my wound, said it all. My Community Nurse had suggested I ask for his opinion on a nasty vein in the area. Her concern is that it may burst and, being on warfarin, could be frightening for me. Knowing what may happen allows me feel more comfortable. Dr S is now trying to keep me one step ahead of the pain by providing suitable pain medications. He has also suggested fortnightly visits, or more often if necessary.

From there it was off to see my Bowen Therapist who worked solely on lymphatic drainage which she has never done before. She estimated that my arm could contain as much as two to three kilos of extra fluid. I would say that is quite possible. I weighed myself this morning and my weight had 'shot up' three kilos in just over one week. It happened so easily. The treatment has certainly stirred things up; I have had to 'go within,' replacing pain with joy since the treatment. It is interesting to note the way the fluid has moved out of some areas. Instead of living with a swollen, lymphoedema limb, I now have a right arm that has ridges, lumps and dents. I am normally very careful when having manual lymphatic drainage as I did develop cellulitis on one occasion, post treatment. I normally see a therapist at the hospital, however, she has been away for a month and the next available appointment is the end of September; I simply could not wait that long. Dr S has suggested another physiotherapy practice, hence the Referral which will give me five free treatments.

Tomorrow we have another trip to Newcastle; it will allow me to keep my Psycho Oncology appointment. At times like this that I can see real benefits in relocating. Going back to town sounds like a plan. Dr S suggested it today and it is something that definitely deserves consideration. This is one of those times that I would like nothing more than for my daughter in Victoria to be well enough for us to spend lots of time together.

Sunday, August 21, 2011

The Last Word

'All our life passes in this way: we seek rest by struggling against certain obstacles, and once they are overcome, rest proves intolerable because of the boredom it produces.'
Although I had promised myself there would be no further dialogue on the matter of the missed breakfast, and the assistance given to the neighbours, I cannot help but have the 'last word' in order to clarify the situation. Sunday morning breakfast was far from the only occasion that I was left 'Feeling Let Down and Disappointed' It happens frequently.
Indigo Dreaming is a Blog of 'My Life;' a record for my children and grandchildren. I deliberately choose to keep most of what happens in my personal relationship away from these pages. I remain mindful that what is written here is a record for life. The written/spoken word cannot be taken back. Why destroy a relationship that has taken years to build. My life is about learning to love unconditionally, which means many things are allowed to 'go through to the keeper.'
The reality for me is that the cancer, recurring in my glands, has spread to the area under the breast. It follows the ribs from the outside in towards the centre. The lesions emerge, appearing to 'pop' out, breaking the surface in pea size lumps. They are inflamed, red, angry and extremely painful. Pain is managed by increasing doses of opiates Wound malodour is a distressing symptom, making life more difficult, requiring regular visits from a specialised Wound Care Nurse. The original fungating wound has increased in size. It is similar looking to a volcano, spewing out its contents, causing me much pain in the area surrounding it. It seems chemotherapy is the only treatment for something that appears to have come from a young specialist who choose to give more, rather than less radiation, knowing that the area cannot be re-radiated.
For me, and my loved ones, it is not a 'pretty' picture. I have no use of my right lymphoedema hand/arm and it continues to hang limply, like a lump of lead, by my side. Domestic duties are difficult. Meal times a bit of a nightmare as H eats only to live; he is not particularly interested in food. Food preparation was always my domain; I loved to experiment with food. I do have domestic assistance and love it when Carole and Tracy arrive each Monday morning. My home sparkles when they leave but they do not help me to get dinner on the table each night.
I guess the reason that I look forward to the opportunity of going out to eat is that it takes me away from the reality, and boredom, of mealtimes at home. I have convinced myself that lambs fry and bacon is good for my iron levels. Although H is extremely good at providing transport for my appointments, we have no 'social' life together. Breakfast at the Paterson B and B is a 'big thing' for me. I no longer have years to look forward to. Without a miracle, my life is being measured in days, week and months.

Friday, August 19, 2011

Grandchild Number 10

'A garden of Love grows in a Grandmother's heart.'
  - Author Unknown

I would like to be well enough to make the 15 hour road trip to Victoria in order to spend time with my family; to hold my new Granddaughter, Layla Isabell, in my arms. Layla already holds a special place in my heart. She was born on 26 May.  I am learning to make full use of modern technology, giving me the opportunity to keep an eye on her progress. These three pictures were taken in June, the month after her birth. Adorable!  

Thursday, August 18, 2011

Too Much!

'I must learn to love the the fool in me, the one who feels too much, talks too much, takes too many chances, wins sometimes and loses often, lacks self-control, loves and hates, hurts and gets hurt, promises and breaks promises, laughs and cries.'

- Theodore Isaac Rubin

I have had second thoughts since my last Post. As a result, the decision has been made to simply thank you for your Comments and to let you know that I am very grateful to you for the feedback, both on the blog and by private email. I will not respond individually for fear of further implicating myself. There is a history attached to the story; I know things will not change. For me, it is undesirable! I do have a plan and will go about taking steps to implement it.

Today I had a phone call from my Tai Chi teacher. Attending classes in the village has been an interesting experience. I began yoga and Tai Chi when we moved permanently to the farm. I had expectations of meeting the locals and forming friendships. Three years of classes and yet my absence appeared to have gone unnoticed in spite of the fact that my circumstances were known. Until Vickie, teacher, phoned recently, there had been no word from anyone. She asked about making the trip from Dungog to Gresford to meet me for coffee. I suggested the farm was a good spot as Haydn has now mastered the coffee maker and cappuccinos are on the menu. Cappuccinos were my poison of choice after Jeremy's accident! They were the very things that kept me alive at the time. They have now been recognised as my downfall, contributing to my current health crisis.

It was interesting to learn from Vickie that she felt the room 'lit up' on my arrival. I asked her if that could somehow be responsible for the the ladies of Gresford making no effort to be friendly.

Now! That is another post.

'Do not give too much to feelings. An overly sensitive heart is an unhappy possession on this earth'
- Johan Wolfgang von Goeth

Wednesday, August 17, 2011

Feeling Let Down and Disappointed

'Some people think it's holding on that makes one strong - sometimes it's letting go.'
- Author Unknown

Although I attempt to keep personal details of my relationship with Haydn private, I am in desperate need of counsel. You, my 'Blog Buddies are 'it!'
Sunday at the farm is our morning to 'sleep in' and listen to the radio although, as retirees, we are able to do pretty much as we like. We had made plans to breakfast at the local B & B, which meant there was no rush. At 7.20am we were disturbed by a phone call from K, a friend and neighbour of Haydns [he had previously made it clear she was his friend.] I was not told exactly what K said; Haydn mumbled something to her along the lines of 'maybe' having something to do. He told K he would ring her back. When he spoke to me he said that D [K's partner] would need to go back to hospital. Haydn knew that D was supported by a fully trained nurse; both K and D are nurses. A friend, up from Sydney for the weekend was there to help. Haydn had given K a hand to muster her cattle on Saturday as she needed to get them ready to be trucked.
There has been an ongoing problem in my relationship with Haydn since he befriended K and D. On Sunday, his language made it clear that he felt some kind of obligation to help K. I suggested he just go ahead as our outing was spoiled anyway. He has always chosen to act defensively when K is involved. Is it my problem that I feel I play 'second fiddle' when K is involved? I reminded him of a previous occasion when there was an incident and I made it clear to him that it may come to making a choice between the two of us. I was frightened by his reaction on Sunday; I know he has a temper, while I am a pacifist. While I remained cool,  he swore at me, telling me that I had 'pushed' him too far. There was slamming of something in the laundry, although I could not tell what was happening as I simply went about organising my medications with my back to him. I think it was a quote from Shakespeare that went something along the lines of - 'methinks he doth protest too much.'
I was bewildered! It seemed like a simple matter to explain to K that we had made plans for breakfast. It was self-explanatory! Maybe I am a simpleton! To be kind to me he may even have been able to apologise on behalf of K for the early morning phone call. Instead of that he was determined to help her no matter what cost.
The situation reminded me of why I felt the need to see a therapist. Has the isolation of life at the farm, along with being in a relationship that appears to be lacking in love, finally caused me to drop my bundle? Unfortunately, D has had several operations since February when her kidney was removed. The past being the best predictor of the future leaves me thinking that, with my own deteriorating condition, I may well find myself alone at the farm, while Haydn tends to K and D. I intend to avoid that at all costs! 

'The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences.'
Eleanor Roosevelt

Thursday, August 11, 2011

Og Mandino Quote

'I will greet this day with love in my heart. And how will
I do this? Henceforth will I look on all things with love
and I will be born again. I will love the sun for it warms
my bones; yet I will love the rain for it cleanses my spirit.
I will love the light for it shows me the way; yet I will
love the darkness for it shows me the stars. I will welcome
happiness for it enlarges my heart; yet I will endure sadness for
it opens my soul. I will acknowledge rewards for they are my due;
yet I will welcome obstacles for they are my challenge'...
- Og Mandino

Sunday, August 7, 2011

Who am I?

'Words of comfort, skillfully administered, are the oldest therapy known to man'
- Louis Nizer

It's official! I'm in therapy!
My appointment with Cath [Psycho Oncologist] went well on Wednesday. Why is it that after chatting for an hour, covering topics that I consider to be very beneficial, I do not remember the ground covered? I went in expecting to talk about my feelings of anger, mainly towards a particular member of hospital staff, and I left not having mentioned it even once.

Cath very quickly picked up that with so much happening to me at this time, I am in a position where it feels like I can't be myself. My identity is connected with my activities of the past; the very things that I have lost! It often seems to me that I am worthless; a feeling that does not sit comfortably!

'Human identity is the most fragile thing that we have, and it's often only found in moments of truth.'
-Alan Rudolph 

Not once did I heard her use traditional text book 'stuff.' We actually held dialogue. I was surprised when she referred to me as having Post Traumatic Stress. There was a brief explanation as to how it occurs with each new crisis increasing existing stress. I jokingly told her it was not a good idea to put a label on me as I just may want to live up to it
As the session drew to a close, Cath said she wanted to see me next week. It's important! I have homework. Love being in therapy; it brings with it a sense of peace!

I often wonder if I am the only one that has unanswered questions. Do you feel that you need help as your journey progresses?

Thursday, August 4, 2011

To Chemo or Not to Chemo

'Most cancer patients in this country die of chemotherapy.  Chemotherapy does not eliminate breast, colon or lung cancers. This fact has been documented for over a decade. Yet doctors still use chemotherapy for these tumours…Women with breast cancer are likely to die faster with chemo than without it.' -
Alan Levin, M.D

Arrived in time for my appointment with Dr Amazing determined to listen; I simply wanted to hear what he had to say in response to my own research.

Firstly, he went through the information regarding HYPERBARIC OXYGEN THERAPY and I was disappointed to be told that I am not a potential candidate due to active cancer cells in what is now being called a fungating tumour. Dr Andre did make it clear that if it was purely Radiation Necrosis the Oxygen Therapy would be useful. He handed me the information and explained that the physicians at the hospital would be more than happy to discuss my case with me personally. So, NO Nanoknife Surgery, NO Hyperbaric Oxygen Therapy.

We then went to the use of chemotherapy. Dr Andre asked me why it is that when I am in his rooms I say 'Yes, Yes, Yes,' only to ring two days later and say 'No, No, No.' I laughingly said that is what happens when I am away from his influence. When Dr Andre asked the nurse to take a photograph of my lesion, Haydn asked her to take one of Dr Andre for me to take home. That way, I could look at it when I felt myself waivering..haha.

We asked if chemotherapy would work on my type of cancer. The answer was 'I don't know.' When I suggested to Doctor that this was 'my' body growing this 'monster' so it had to be my underlying body chemistry that needed to be changed, he agree. Just how we do that he does not know. Seems to me that chemotherapy could be nothing more than a 'Band Aid' fix in my case!

I explained my thoughts on being 'locked in' to waiting rooms and hospital visits at this stage of my life. Immediately, and I mean immediately, he suggested oral as a way of avoiding that situation. Once again, I left the hospital agreeing to let him know as quickly as possible of my decision.
'To be complete, a healing system must be able to cover the entire field of human experiences-physically, mentally, and spiritually.
Any system which denies any part of this trinity fails in its attempt to heal to the same extent to which it denies any part or parts.'

-Stanley  Burroughs