Dinner Tonight

With my heightened interest in blogging once again it is good to be here. In the past I gained a great deal of insight in responding to your comments. Unfortunately I have a tendency to be a little long winded which is just not possible as I struggle with my low-level typing skills. I value your input, and look forward to the day that I am, once again, able to respond. In the meantime, please be patient and accept my heartfelt thanks. Blogging would not be too much fun without readers.

As you can imagine, food preparation is rather difficult when I am unable to hold a knife. Therefore we are always on the lookout for simple, good tasting recipes.

On a recent visit to the Mater Hospital, Haydn grabbed a recipe that looked tasty and entailed very little food preparation. Here it is; tonight we put it to the test.

Chinese-Style Curried Prawns

1 onion, thickly sliced

2 cloves garlic, thinly sliced

2 tablespoons mild curry powder

400g packet, raw peeled prawns, defrosted

4 cups mixed frozen stir-fry style vegetables

1 tablespoon cornflour, blended with 1 and one quarter cups chicken stock

Heat 1 tablespoon peanut oil in a wok over high heat. Add onions, garlic and curry powder, cook for 2 minutes. Add prawns and cook for 1 minute. Add vegetables and stir fry for 5 minutes.

Stir in stock mixture. Stir until sauce boils and thickens. Reduce heat and simmer for 2 minutes.

In theory the recipe looks great. In practise, my choice of curry powder was apparently not mild. Although I used only 1 tablespoon it was far too hot to really enjoy however, it was obvious that it had the makings of an easy, nutritious meal.

To add to our dilemma, the rice was cooked in the microwave and it turned out like a solid rock in the bottom of the container. Where, oh where did I go wrong?

In spite of the outcome, and the leftovers still in the refrigerator, I will be doing it again in a week or so. It certainly has potential.

Maybe the hot curry was just what Haydn needed to kill of those cold germs which were probably picked up when he stood in the rain with Sonya, waiting for the courtesy coach last Friday night.

Survival

It feels important that I take the time to do regular entries and accept that, at times, they may be short and to the point. With the deterioration in my right arm/hand there may well come a time that I am dependent on voice activated technology to allow me to get my message across. In the meantime I will do my best as a one finger typist.

Feeling very chuffed today as we have been away the past two weekends and I have somehow survived.

The last weekend of May we travelled to Dubbo to visit my beautiful, and much loved, Aunty Pat who is Mum's youngest, and only surviving sister. The weather was horrendous and Saturday night saw Haydn and Uncle Bruce at the trots. The stands offered very little protection from the elements and, like a true punter, Bruce had no intention of leaving before the final race was run.

Fortunately, we were rewarded with good Chinese food that they picked up on the way home.

Haydn bought a new Mitsubishi Pajero back in November; the first new vehicle in many years. It was ironic to find that we had a rock hit our windscreen on the way home. After years of driving second hand vehicles, who would have thought that we would do a windscreen driving through Dunedoo. Oh well! That's life.

This past weekend we joined my very special friend Sonya, and her husband Trevor, in the celebration of his 70th birthday. Sonya had vouchers for a weekend at Australis Resort at Diamond Beach on the North Coast of NSW and we were invited to join them.

Once again, we were faced with horrendous weather conditions, particularly on the Friday night. On arrival at the Resort, Sonya had phoned to organise collection by the courtesy bus to take us to and from the restaurant for dinner. It was booked for 6.15pm. As we stood waiting in the pouring rain tempers were wearing a little thin when it got to be 6.40pm and there was still no sign of Ron in his, 'not so trusty' coach.

We did eventually get to have dinner and were delivered safely back to our accommodation with absolutely no let up in the rain. I think we have had about 4 inches, or 100mls, of rain over the past week.

Saturday we had an enjoyable day and even managed to fit in a movie. Our choice was Robin Hood, starring a couple of favourite Aussie stars, namely Russell Crowe and Kate Blanchett. Dinner at the local Tavern was excellent.

Cannot believe that both weekends have passed and I have taken not a single photograph. Knowing that I want so badly to have these experiences recorded, I will have to do better in future.

Benefits versus Risks

I cannot help but wonder about the benefits and risks associated with some of the medications taken daily in the hope that I will be given time, along with reasonable quality of life.

Towards the end of 2009 I commenced taking Arimidex, which belongs to a group of drugs called Aromatose Inhibitors. These drugs are useful when given to stop the production of estrogen. After three months on the drug I mentioned the debilitating joint pain to my oncologist. She told me to stop taking it immediately.

My instructions were to have a six week break and then to begin a course of Femara (belonging to the same group of drugs.) This was about the 10 December. Approximately 2 days later I began suffering unbearable pain in the right arm/hand. Palliative Care were summoned. I was given an injection that provided almost instant relief. Whew! Don't want to go there again! I believe I actually managed to put some sort of a Post together at the time. I had daily visits from my amazing Palliative Care team until both the pain, and medications, were stabilised.

My General Practitioner (doctor) suggested that the Arimidex may have been controlling the cancer. When it was withdrawn, the pain indicated that it was, once again, on the move. Of course we have no way of proving his theory.

Back to the present.

I commenced taking my Femara in February and there appeared to be no visible repercussions. That is until a routine visit to Dr Milton Sales, (my GP) about one month ago. Not only is this man caring, he is very thorough and believes that more things are missed through not looking than not knowing.

An examination indicated that I could possibly have a thrombosis in the right arm. Sure enough, I was referred for imaging where a Dopler showed a 9 centimetre blood clot. The concern being that it could spread up the arm and could easily move to the lungs or the heart. I commenced a 10 day course of Clexane immediately as well as being put onto a three to six month course of warfarin to thin the blood. This means regular blood tests to check that INR levels are between 2 and 3 indicating that the meds are doing their work.

While visiting Dr Sales yesterday, I mentioned that there was an unusual pain between the wrist and the elbow. He is now confident that the blood clot runs almost the full length of the arm. Blood clotting is a risk factor for approximately 1.2% of patients taking Femara. Dr Sales feels that the benefits outweigh the risks. I am not so sure but will certainly be discussing it with my oncologist when I attend clinic next Wednesday.

There is a 'fear' factor for me. Having experienced the uncontrolled pain of the recurrence in the brachial plexus I am reluctant to discontinue a medication that may well be working effectively to prevent the spread of cancer. I am hoping that my PET/CT Scan on Wednesday gives a clear picture. I am uncertain... finding my current situation quite challenging.

Every day I give thanks for the many blessings in my life and I pray to God to be given the strength to endure whatever it is my future holds.

Playing Mind Games with Myself

These are tough times for me.

I was full of optimism with the move to 67 hectares (almost 200 acres) of bushland in the Hunter Valley in July 2008. The right to the 'good life' had been earned. Or so I thought.

Retirement is what dreams are made of. At last! The opportunity to have a vegie patch and do some of that travelling that had always been just out of reach. Why was it that my health began spiralling downward at that time?

It took 12 months of incredible pain, and many hard earned dollars, to determine the recurrence of the breast cancer in the brachial plexus. The only treatment offered was a 'super size' dose of radiation that left me feeling downright fatigued and yet, optimistic that I would have years to undertake the many tasks that had been put on hold following the death of my beloved Jeremy Jon just days after his 24th birthday in November 2006.

What happened? Why did the cancer eat into the nerves and muscles effecting the use of my dominant right arm/hand? For reasons that I do not fully understand, driving became more of a challenge. Quite possibly, it was the fatigue that plagued me, leaving me just too tired to keep my eyes open. I became less self reliant and more dependent on Haydn to act as my driver and my carer.

My hair had always been my crowning glory. I could go to the store in my house clothes, providing my hair was freshly shampooed and dried. I was secure in the knowledge that people had, for years, commented on my handwriting. The joy of sending greeting cards fast disappeared as I struggled to learn to write with my left hand. Not only had I lost the ability to take care of myself I felt like I was losing HOPE. No longer able to touch type, the frustration of becoming a one finger typist annoyed me. Yes! There is voice activated technology and I may well end up becoming more familiar with it, but for now my motivation is simply not there.

Life can be very cruel! I feel sure many of you will testify to that.

The countryside, once a thing of beauty, now has me feeling trapped. I seem to have lost my confidence in so many areas of my life. Unable to prepare a meal, I rely on Haydn to do the food preparation. I then have to bite my tongue when he shows little respect for my request to, PLEASE..chop the vegetables the same size allowing them to cook evenly. Thankfully, my obsessive compulsive disorder is not fully blown. I have not driven for months. Indeed, my days of complete independence may well be a thing of the past.

I sit here wondering just how I am going to get used to the life of isolation at the farm. If indeed, I have to.

My days consist of medications, indeavouring to keep the pain under control. Meditation, in an effort to empty my mind of the useless, damaging chatter. Exercise, to enable me to retain some use of this somewhat useless arm, thus preventing a frozen shoulder. The extraordinary Palliative Care team always a phone call away.

On my 'better' days, I realise that I still have a story to tell; history and information about myself. All the things that my children, and grandchildren, will one day look back on. An opportunity for them to get a sense of the 'real' me.

What do I want for them to see? Definitely not a wimp. Rather, someone with incredible strength and courage. Someone that did no give up just because the going got too tough. Someone that found the strength to dig deep and to use all that friends and acquaintances bring to the table. This is the time to make the most of all the cyber world offers. When I am unable to get to friends, then I will feel secure in the knowledge that they will come to my desktop.

How could I not smile knowing that I am in the PERFECT place....

Group 33 Lunch at the Farm

Saturday last I was delighted to be in the company of 13 members of my Breast Cancer Support Group. Throughout the past 18 months I have missed many of the monthly luncheons due to pain and suffering, including my inability to drive as a result of fatigue from the medications. The women decided it would be worthwhile to hold a 'special' luncheon at the farm.

The girls arranged to meet and travel together. Several of the women live in the Newcastle/Lake Macquarie region while others reside around Maitland, which is closer to the farm. The first 2 cars arrived. I immediately began feeling slightly nervous; I was expecting around 9 and I had 8. They began pulling food out in Esky Cooler boxes. It had all been planned by Pam [Social Secretary] that Haydn would do meats on the Weber Q barbeque and the group were given responsibility for drinks, breads, salads and deserts. Looked like we were feeding an amy. But where would we sit? Would the weather hold to allow us to sit outdoors?

It was planned that it would be a leisure day for me; their way of acknowledging the stresses of the past 18 months.

A few minutes later and I was surrounded by 13 lovely ladies - along with Haydn and myself. I felt slightly distressed when it became painfully obvious that I was no longer able to press the button to activate the shutter on the camera. Fortunately Margaret was a willing party and took lots of lovely pics, although I was too distracted by the great company, food and laughter to remember to get Haydn to take a snap of the group as a whole.

We really did have a delightful day! Plans were put in place for a winter luncheon which would enable us to sit around the combustion fire, burning wood felled on the farm, and split by Haydn for exercise and fitness. Maybe even a walk up the mountain could be arranged .

The travel time home did not appear to phase them as it was 4.45pm before anyone made a move to leave. I was presented with the most magnificent bunch of liliums that I had ever been given although I really felt that it should have been the other way around.

It was a fantastic day and I did not lift a finger. I came into the kitchen to find the dishes done and leftovers in the refrigerator which meant no cooking for at least a couple of meals.

Cheryl on the left with Chris

Lunch is being served

Haydn entertains the girls and talks about life on the farm

WOW! In appreciation. The buds were not yet open so I am enjoying them now....

Life Goes On

It would seem a glitch in a Windows Update was the reason my computer was in Lillo's workshop for the past week. It was great to have it back so why then did I find myself in tears? The deterioration in motor skills, and build up of fluid in my hand and arm saw my typing skills go out the door. For the first time in my life I have become a one finger typist. This is my reason for not responding to emails or commenting on Posts. It is my intention to find some way of overcoming this, so if you have any ideas I would love to hear your suggestions.


Dr Janine Lombard, my regular Medical Oncologist, is currently on maternity leave. I found myself sitting in front of Dr Tony Bonaventura, making every effort to get some understanding of his personality, which is often more important to me than actual ability. He appeared to be non-communicative, which presented some challenges.

I was told that the recurrence of my cancer in the brachial plexus is most unusual (unfortunately for me.) To me this means that the medical profession appear to know very little about my condition, or how to treat the symptoms. Dr Bonaventura suggested that I undertake hormone treatment, using Femara (Letrozole 2.5mg) for 6 weeks. I will then have another PET Scan and, who knows where to from there! Chemotherapy has been mentioned.

Haydn has made it very clear that he is with me for as long as it takes and my children are very grateful that I am in such capable hands. Who would have thought that it would be my ex-husband acting as my carer? Haydn is very reassuring and reminds me, as necessary, that he will do all he can to facilitate my healing.

Yesterday we visited Dr John Prickett at Hunter Pain Clinic. If I have anything to be grateful for, as far as my medical condition goes, it is that the war in Afghanistan means that more is being learnt about the pain associated with the brachial plexus. Dr Prickett suggested that it is the worst pain to suffer from, and one of the worst pains to treat. There is no drug known that completely eases the pain. He did say that most patients he sees are out of control; he sees no sign of that with me. He also said that patients usually suffer fom depression. When the depression is treated the pain eases. After discussion with Haydn, he said that he did not feel that was relevant. Allelulia! Thanks family and friends. You play a huge part in keeping me sane.

I was given a prescription for Sodium Valproate, an anti-epileptic drug, and also Norspan patches to relieve the pain and replace the large doses of Oxycontin which come with dreadful side effects . One of these is the dry mouth leading to tooth decay. It seems that these teeth of mine, which have cost huge sums of money over the years, may slowly, but surely, disappear.

Before having the prescriptions filled I will discuss the treatment with Palliative Care and my new GP, Dr Milton Sales. It is easy to become confused with too many treating practitioners involved. I have learned the hard way the absolute necessity of having Palliative Care on call.

Once again I was told that my case is quit unique and there is very little known about the condition, or treatment.

Dr Pricketts final words were that I should 'revel in my uniqueness' whatever that means...

Medical Update

The past 10 days have been hectic and yet I have remained the farm almost daily. I have the delightful Alison and Corina that do my domestic duties each Wednesday morning. I am home all day and yet I seem to get nothing done. How can this be?


Things changed dramatically on 5 February when I found my 40mg Oxycontin tablets floating in the toilet bowl. I phoned Palliative Care. Dr Newton and the team made the decision that I would be put onto patches; there appeared to be an absorption problem which could have been related to the Dicloxacillian antibiotic that I had been taking for suspected, low grade, chronic cellulitis.

The patches went on Saturday. I discontinued taking oral Oxycontin, under medical advice, and the unbearable pain began about 3am Sunday 7th. Being the caring, considerate person that I am I stupidly waited until 9am to phone Palliative Care. I was at screaming point! By 10.30am Sally arrived and promptly gave me an injection (no questions asked.) Miraculously, the pain quickly abated.

I went onto the 24 hour pump and remained on it until yesterday when Sally arrived bearing the good news that the pump would be removed. Very nervously, I resumed taking Oxycontin at a higher dosage. It is now 3.49am Friday 19th and I have been wide awake since 2am; not actually in pain, but very unsettled!

During this period I have had every test imaginable and the results are 'sort of' in. Dr Gupta phoned Monday with the news that, although the MRI shows a marked improvement in the radiated area, the cancer is still active in the Brachial Plexus. I will learn more when I consult with him this afternoon. Hence the reason for my sleeplessness!

The days fly; daily chores take so much longer. Even the simple task of going to the toilet means I struggle to get my underpants and trousers on. I am unable to fasten them. Even when using public toilets, I am sometimes forced to ask for help. Pride has gone out the door and been replaced with humility and gratitude.

Daily visits from Palliative Care take anywhere from half an hour to two and one half hours.

I still manage to do Haydn's bookwork but I am unsure of the future. I am surprised at the rapid deterioration and loss of function. I am scared, afraid of what is in store. I cry often and laugh lots. I give thanks for my beautiful family and friends that daily express their love and appreciation for having me in their lives.

I am isolated at the farm. I am unable to drive and may never do so again. I have lost so much. The isolation that had become my prison is now my bliss.

I phoned Lillo and ordered a new computer. I asked for the biggest, brightest coloured notebook; the one that most resembles a desk top. I asked about Web Cam and Voice Activated Technology that will allow me to continue my friendships online. I am planning for the day that I am blessed to have life and yet, the degree of disability will prevent me doing things in the way I have become used to.
Have I missed anything?

Today I give thanks for the many blessings that fill my life and the peace that fills my heart.

Staying Strong

Haydn has always been conscious of preparation and funding his own retirement. As Managing Director of his own small Manufacturing Company, in May 2000 he decided to buy an industrial complex containing 4 sheds, thus preparing for his own his own comfortable retirement.

At the time of our retirement - June 2009 - he was given a gift from one of the tenants, 2 very small frangipani trees, which we decided to keep in pots; they were of unknown colour. One of them has just produced its first flower; almost white with pale pink centre.

Friday turned out to be drama filled.

Palliative care arrived mid morning and set up the canula in the abdomen for the Grasby machine. By mid afternoon, I realised that there was redness at the site. A phone enquiry, regarding the stinging and itching, and was told by Chris they would be right out. Better to do it then rather than drive the distance in the middle of the night if there were problems. They departed about 5.30pm.

Around 9pm the alarm began to go off. After waking Haydn to have him unlock the machine ( the lock & key probably insures the safety of the morphine) we determined that it was not the battery. I therefore found myself waiting for a third visit from Palliative Care at 10.23pm Friday night.

This time I had successfully pulled the canula out and it had bent back on itself. No way was this little beauty going to give me any pain relief. Thank goodness for the inbuilt safety features of these machines.

Then, of course, there was no getting me to sleep. Too much hype for a Friday night.

An interesting view of how daggy I looked at that time with the machine hooked up.

And then there is our big fat night time resident frog. I now know why he is huge!

He climbs on our glass French doors later at night and devours the moths and insects that are attracted by the lights inside.

I thoroughlly enjoyed my observations.

Photography not brilliant as I am learning to manage with a greater degree of disability due to the recurrence of the cancer.

Almost impossible to click the shutter with the right hand.

And then...

Then there were all of these beautiful Birthday Cards to help me to celebrate my January birthday.

Haydn asked if my friends thought I was going to die as there seemed to be more cards than usual.

My reply 'We are all born to die.'

It is between me and my Maker but I know I am not ready yet!

Angel Wings

I recently purchased this tulip like lotus plant, aptly named Angel Wings.

It has produced its first flower, reminding me that Jeremy is with me in spirit always.

The morning began badly. Although the topic of this discussion could be considered a little sensitive, I feel it is imperitive to record the details.

One of the side effects of Oxycontin is a tendency to constipation. It seems prudent to check for signs and symptoms after going to the toilet. This morning I was shocked to see, what appeared to be, a 40mg Oxycontin tablet in the toilet bowl.

I decided to discuss the matter with the Palliative Care Duty Nurse. Shann listened to my story and suggested that Dr Newton [Palliative Care Doctor] would be the one to ask on her return from rounds. I was told to do nothing and wait for her to get back to me.

What a surprise to find not 1, but 4 more tablets in the toilet bowl at lunch time. Panic!

Another phone call to Shann and then wait. Not long before I received a message asking if I would have any objection to using patches for pain relief. I said anything is preferable to this unbearable pain. I had no idea how long it had been since the Oxycontin was fully absorbed.

It was then I knew that I was being guided. I began to think about the series of events that had led to this. In the past everything was written in my Journal. The return of the cancer in the brachial plexus means that writing is difficult. Almost impossible actually.

It was December that I saw Judy Hickey the Physiotherapist at the Mater Hospital. She suggested that I could have chronic, low grade cellulitis which would require a course of a particular antibiotic. She felt the situation was quite urgent. Rather than wait to see my regular GP, she thought it prudent to see Dr Gupta [Radiation Oncologist] as he was somewhere around the hospital. Dr Gupta was busy, consequently I was seen by his Registrar who prescribed a course of Dicloxacillin. It came with a list of possible side effects. I was not surprised to find myself suffering from gut problems.

Spoke to my GP about the side effects. He changed the antibiotics as there were still symptoms of cellulitis. End of story...

Or so I thought!

Until today. I began to put pieces of the puzzle together.

I realised it was about the same time that the pain returned with a vengeance. I referred to it as acute. My thoughts now are that it was about that time that I stopped absorbing the Oxycontin. I increased my dosage from 20mg morning and night to 50mg three times a day. That was when we began to suspect something sinister hence, the current testing.

I once again phoned Shann as I began to think that, if I was right, 50mg patches would be far too strong. After all, maybe it was simply that the 20mg was not being absorbed, rather than a more serious problem.

Shann appeared not to understand my concerns and suggested I simply see my GP as soon as possible.

I changed GP's when my GP of 13 years standing told me that this cancer is going to kill me. I decided that I did not want to be treated by a practitioner that had given up HOPE, even if there was a chance that I had lost HOPE.

I felt I was on to something and phoned my daughter Megan to tell her that there was a huge ray of sunshine appearing on the horizon. Just a little chuffed that I had worked things out myself I was shocked when she said 'Mum, don't you remember what happened to me?'

Megs was given the same antibiotic and ended up in hospital. Seems like a check of the stool will determine if I require another course of antibiotics to fix the problem. Left untreated this condition can have dire consequences as nothing is absorbed [including the Oxycontin] Ouch!

In the meantime, I will have to discuss the problems with the Pharmacist when I go to pick up the prescription for the patches. Maybe I still require only 20mg of Oxycontin night and morning.

My rule is not to worry about how long I live, but to focus on how I live.

I intend to stay alive.. no overdose of Oxycontin for me.

Where to now?

I feel a definite need to return to these pages and continue my writing as my future is looking just a little uncertain at the moment.

A new lump, more in the chest wall than the breast, saw me make an appointment with the Radiation Oncologist rather than the General Practitioner. The decision was made with the knowledge that my GP could not request an MRI should it be necessary, and he would still receive a copy of the Report.

Dr Gupta [Radiation Oncologist] instead requested CT and Bone Scans. Although it turned out to be a bad decision on my part, I phoned my GP for the results. I was told that everything appeared to be OK however, he would run it by the Senior Practitioner [Dr Milton Sales] and would get back to me if necessary.

I heard nothing; it felt like a welcome reprieve. I was thrilled! Damian and Tyneal had driven almot 1000km from Melbourne to spend a few days. My 12 year old grandson Jascha had been with me for 2 weeks of the school holidays and he would be going home with them.

It came as a bit of a surprise to receive a phone call from the Mater Hospital at 3.30pm on Friday 22 January on to say that Dr Gupta wished to see me at 3.30pm on Friday 29th. A week is a long time in the life of an oncology patient waiting on results of imaging!

I must admit that I was probably more concerned that I had been kept waiting a week for the results than the results themselves. I was therefore a bit taken aback to see very clearly that there was, what appeared to be, a new soft tissue deposit in the area.

It was not surprising to find that Dr Gupta recommended MRI's of both Brachial Plexus and Cervical Spine. He also suggested a PET Scan. I asked for copies of the Reports and headed home to reflect on my diagnosis. Poor Haydn stays strong with all of this and continues to be an amazing support, although I think that he really feels that everything will be OK.

It was not until Saturday that I dragged Images and Reports from the back seat of the car and discovered that, in technical terms, the Bone Scan shows 'an avid focus of uptake is seen in the right side of the mandible - this is usualloy related to dental pathology. Occasionally metastatic disease can present in the mandible...'

From where I sit now it seems hard to believe that the GP could have thought there was nothing of significance. It certainly does not feel like that to me.

Then of course there is the fact that there was a message on our answering machine from Hunter Imaging stating that they had rescheduled appointments to treat my case as urgent.

I now have MRI's Monday and Tuesday next and PET Scan on Wednesday. I guess there will soon be a clear picture....

Today there was another phone call from the Mater saying that Dr Gupta wanted me to see Dr Tony Bonaventura [Medical Oncologist] on 26th February. Although I have not had chemotherapy, I had been seen by Dr Gupta's wife who is now on Maternity leave. I am happy with his choice as one of my friends from Group 33 [Breast Cancer Support Group] is a patient and she speaks very highly of him.

It would seem that I have achieved nothing by going through intensive radiotherapy. I am still on Oxycontin, although now it is three times per day, rather than twice. The pain is, at times, unbearable and I suffer from lethargy and fatigue and can no longer manage to run a household.

My conclusion. Cancer can be cruel. But then so too can the treatment