Sunday, November 13, 2011

New Territory. Again!

'Life is uncharted territory. It reveals its story one moment at a time.'
- Leo F Buscaglia

Once again we have moved into uncharted territory with swelling of the right arm and upper body. The shortness of breath, and inability to pass urine, became a huge concern. Monday morning of last week when the Community nurse arrived to help with shower and dressing change, she indicated her concern, deciding to make a phone call to the palliative care team once the dressings were firmly in place. I felt relieved, due to my confidence in their ability to assess the situation and their wisdom in making appropriate decisions. Before the Community Nurse departed she used a portable ultrasound to check the bladder confirming it was not the culprit. No problems there it seemed. Back to the drawing board!

The Palliative Care nurse undertook a thorough examination before telephoning the Palliative Care doctor. In the meantime, I received a call from the co-ordinater at the Mater hospital. We discussed the current crisis, she took notes relaying the information to 'Dr Amazing' who indicated he would probably like to see me admitted to the hospital for observation and further assessment. Radiation was mentioned, although given my previous experience, it made me shudder. That was certainly not my preferred choice!

Given that 'Dr Amazing' is away this week, and knowing that I am so reliant on Haydn for personal care, including dressing changes, the Palliative Care doctor decided to try an 8mg injection of Dexmethsone immediately with 4mg tablets taken daily, in the hope it would reduce swelling to the area. The hope is that, with swelling reduced, I will breathe a little easier and feel more comfortable which obviously means passing urine regularly.

It is now one week later and I have been on the steroid [Dexmethsone] for almost a week. There has been some easing of symptoms. This feels like a difficult journey to undertake! It does appear that this dreadful disease which now appears to be a fungating tumour is spreading quickly, and aggressively, across the chest wall, causing swelling of glands and vessels. Not a pleasant sight or thought! My right arm is so swollen it is hard to believe the skin does not burst. The arm and hand are covered in tiny bubbles and we can only wonder what is in store? There are absolutely no clothes in my wardrobe that fit me and leaving the house has become somewhat distressing. This is the most incredible journey. I have discussed with Palliative Care my wish to be given whatever is necessary to ease my pain and ensure my comfort as much as possible.                                                                                      

'We seem to gain wisdom more readily through our failures than through our successes. We always think of failure as the antithesis of success, but it isn't. Success often lies just the other side of failure.'
- Leo F Buscaglia

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.

Monday, September 26, 2011

Message from Paul

'We don't accomplish anything in this world alone... and whatever happens is the result of the whole tapestry of one's life and all the weavings of individual threads from one to another that creates something.'
- Sandra Day O'Connor

At a time that I want desperately to write, I simply find I do not have the energy. Never before have I experienced fatigue like I live with now. The lymphoedema of my right arm has become a serious problem! I am due to see the physiotherapist at the hospital on Wednesdday and, although I know there will be benefits, a one hour consultation is not sufficient time to correct a condition that is rapidly deteriorating. I spend day after day sitting and staring into space thinking of things other than the pain

At the time of my breast cancer diagnosis, I was advised of the work of a Bio Chemist who had successfully treated many cancer patients. I decided to pay P a visit and was impressed when he spoke of correcting my underlying body chemistry. That made sense to me! Unfortunately, during treatment P received adverse publicity and was banned from continuing to practise as a bio chemist. We remained in contact.

My condition has left me with little energy for those close to me; even less for friends and acquaintances further down the list. Yesterday I received a message from P asking me to ring him today as well as enquiring after my health. P reminded me that we share a friendship that will weather any storm. I was touched!

Today I called bio-chemist P. We discussed my condition, which gave me the opportunity to tell him that life is difficult. I can see no doors opening for me. No way of reclaiming my life; giving back some of the quality that has disappeared. I appreciated P's response when he said 'We are not giving up! You have been a thread in the tapestry of my life for too many years. I do not want a hole.'

It seems I am overcome by the frustrations of ongoing health problems. I am looking for release from the pain. There has to be a solution!

At a time that I so desperately need the benefits of your response dear friends, I find myself struggling to do my own posts, or even to read and comment on yours which is heartbreaking for me.

Wednesday, September 14, 2011

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....

Sunday, September 4, 2011

Please Pray

'If thou shouldst never see my face again, pray for my soul. More things are wrought by prayer than this world dreams of.'
-Alfred Lord Tennyson

'Lord don't take my tears or my cross away
For I would grow weary and forget to pray.
I want to serve You all of my days,
I'll share You with others along life's way.

Lord may I never take for granted
All the Blessings You send my way,
Let my heart give You all my Praises,
Following Jesus I will never dismay.

For my tears will keep me humble
Though many times I fall and crumble,
Lord grant me strength for each new day,
Lord don't take my tears or my cross away.

Teach me Lord to never grow careless
Or grow weary in my walk each day,
Remind me Lord how much I need You,
Lord don't take my tears or my cross away.

Lord You see each wave as billows roll
You hear each prayer on Earth extol,
You understand every heartache and tear,
I thank You Lord You are always near.

Lord, You promised a better day is coming
Our cross we'll bear no more,
We'll live with You for all Eternity,
Upon Heavens bright and golden shore.'

This poem was posted on my Facebook wall by a very dear friend (thank you Alice.) 

Saturday, September 3, 2011

The Facts and The Conclusions

'It is not a question of God allowing or not allowing things to happen. It is part of living. Some things we do to ourselves, other things we do to each other. Our Father knows about every bird which falls to the ground, but He does not always prevent it from falling. What are we to learn from this? That our response to what happens is more important than what happens. Here is a mystery: one man’s experience drives him to curse God, while another man’s identical experience drives him to bless God. Your response to what happens is more important than what happens.'
–Chip Brogden

A picture tells a thousand words. If you notice the region between the arm and the wound, you will see that it is fluid filled and very inflamed, causing a great deal of pain and discomfort. There is a concern that with little movement of fluid, cellulitis is a potential risk.
I have decided to do a review of test results and findings. This will provide an overview of the disease, and its progression, allowing me to summarise at a later time.

Fact: When Haydn and I retired in July 2008 there were plans to farm, socialise and travel; and not necessarily in that order.
Fact: Although Haydn had owned the land for approximately 20 years, the new house was built with a view to living comfortably in retirement. All of these things take money; we thought we were prepared for all possible outcomes.
Fact: It was only a matter of weeks before I began suffering debilitating pain; pain that had me watching television from the couch throughout the night while walking down the driveway screaming in agony during the day. Pain that prevented me from attending local Tai Chi and yoga classes as a way of exercising and meeting people.
Fact: It April 2009 that I was eventually referred to a Consultant Neurologist who recognised my suffering and requested a MRI. I was prescribed Oxycontin and Lyrica [pregabalin] for the pain.
Conclusion: Appearances consistent with amorphous metastatic infiltration of the right thoracic outlet involving muscles, brachial plexus and vascular encasement with axillary lymphadenopathy.
Fact: Radiotherapy was the only treatment offered. At no time was I told of the potential for secondary cancer as a result of treatment. Due to the severity of my pain, I failed to do my own research. I was told that the recommended dose would minimise the risks and maximise the benefits given that the area could not be re-radiated. I accepted that it was to be done in 'good faith,' therefore I chose to place my trust with the doctor.
This picture was taken well before the end of treatment as Haydn refused to take pictures as my flesh began to burn like a blowfly on a barbecue.
Fact: Approximately 5 days before last scheduled treatment I went in as usual and prepared myself to be 'zapped.' It was then I was told by the lovely Mel to put my clothes on again. She proceeded to hold my hand as she took me with her to the Nurses' Station where she abused them for allowing me to go home the previous day without receiving, what she called 'appropriate' treatment for the burns. More importantly, she asked why my Radiation Oncologist had not been notified of the damage. There were sparks flying. In hindsight, maybe the 'good' doctor could have reviewed the situation.
Conclusion: I think it is obvious. 
Fact: In May 2009 my Radiation Oncologist referred me for a CT of Neck, Chest, Abdomen and Pelvis.
Conclusion: Tumour recurrence at about the level of the surgical site extending through into the root of the neck. Malignant lymph nodes in the right axilla. Oncologist made no recommendations. It now appears this may have been the beginning of the secondary soft tissue cancer, resulting from radiation damage.

Fact: In January 2010 a CT of the Neck and Chest resulted in evidence of a new soft tissue lesion which arrived anterior to the right first costosternal joint. Lesion measures 15 x 17mm.  Commenced Arimidex [Aromatase Inhibitor] At this time the increasing nerve pain in my right arm/hand had effected my ability to function normally in the home. Domestic duties, previously undertaken so easily, had now become difficult. Much of the fun of cooking was gone. I was also thinking seriously about life on the farm. No longer able to drive a motor vehicle due to prescribed medication and disability, I began to feel 'trapped.' It was my blog 'buddies,' Memory-of and Facebook friends that allowed me to have the friendships lacking in real life. Fatigue was an issue as talking on the telephone wore me out. I felt deserted by friends that found the 180km 'round trip' from Newcastle just too far to travel. Once again, we were disadvantaged by the isolation.

Fact: In February 2010 a PET Scan noted several foci of increased FDG uptake within the upper arm/chest, including 3-4 lymph nodes. A large right jugular node was also noted. Increased uptake noted in several nodes throughout the right chest wall.
Conclusion: There are several right upper arm and chest lymph nodes, including a contralateral left tracheobronchial lymph node, which are consistent with malignant disease. The Referring Physician was the same Radiation Oncologist who, at no time, recommended further treatment.
Fact: In April 2010 a Right Arm Venous Doppler showed a chephalic vein thrombosed over a 9cm segment.
Fact: Comparison PET Scan - by now radiation damage from treatment and testing puts me at increased risk.
Conclusion: Comparison with February 2010 PET-CT scan demonstrates significant reduction in intensity of activity in the persisting nodes in the right axilla, right neck and right parasternal Aromatase Inhibitors.
Fact:  In January 2011 'Dr Amazing'  requested a Radionuclide Bone Scan.
Conclusion: No evidence of boney metastases.
Fact: CT Neck, Chest, Abdomen and Pelvis
Conclusion: Increasing size of right supraclavicular lobular masses with associated bone destruction.
Suspicious change in the area of right inferior lung scarring which may reflect further benign change or small mass.
Post surgery right axillary changes mostly due to radiotherapy with also a suspicious nodal metastasis which has not enlarged.

Fact: In May 2011 Neck CT shows previously noted left supra-clavicular adenopathy with a solitary nodule measuring approximately 6mm remains relatively unchanged.
The right medial clavicular mass has enlarged and now measures approximately 4.3cm x 19.5cm in transverse and AP dimensions. Again underlying permeative bone destruction of the medial clavicle and its cortical margin is noted.
CT Chest - same date compare to January study. There is an ill-defined soft tissue stranding in the axilla which was previously noted and is unchanged.  A nodule in the right pectoralis is likely secondary to post radiation effects.

Conclusion: The right supra-clavicular lobular mass with associated bone destruction has increased since the previous scan.
Fact: In June 2011 Dr Amazing requested a PET scan which showed an avid FDG uptake in the right chest wall lesion which now measures 67.6mm height, 53.5mm at greatest width and 20.7mm. There is a periosteal invasion with FDG uptake in the right medial clavicle. Immediately lateral to this lesion there  is a small FDG avid nodule in probably a subpectoral site.   
There are at least three further lesions in the anterior chest wall from the nodule to immediately anterior to the liver.

Conclusion: Today's scan is consistent with FDG avid malignancy in the right chext wall, axilla, superior mediastinum and right axilla. There is no definite evidence for FDG avid disease in the right brachial plexus (light at the end of the tunnel)

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.