A black hole

Things have been going so well. Macmai has been becoming stronger and stronger and his zest for life returning.  He always has been a larger than life man.  However yesterday was a very bad day.  This last bout of chemo was a day earlier so one less recovery day,but despite that it may well be that he has hit the point at which the cost of the chemo is greater than the benefit.  He was no worse the two days the pump was running, buoyed no doubt by our friend dexamethasone, but once the steroids stopped his tiredness, weakness, lack of appetite and lethargy increased exponentially.

Our palliative care nurse came for a visit.  They are all so lovely the nurses; caring and kind.  Sadly she had no real answers and in her discussion of causes and solutions it seemed that Macmai faced the reality that probably has been in his subconscious that he may well not  get better.  The hope was there because he had responded so well to the chemo, having gone from the sickest to the healthiest of the oncologist's patients.  She was discussing how the symptoms could be either chemo or disease and then gave him a big hug on leaving saying how this should not happen to such a nice man.  

My feeling is that the chemo is the cause at present and that on Monday he will probably not have recovered sufficiently for the next cycle.  I don't actually think there has been progression of the liver disease, though I constantly am worried and anxious about where next it will pop up.  The hard thing for me working in the field is that so many times it does pop up elsewhere when the liver disease has been knocked back.  I, now, am constantly haunted by an off the cuff comment by a specialist colleague, that we have knocked back the liver disease in patients to cause brain secondaries instead.  That I fear, fear for Macmai and fear that I will not be able to manage the care, which I so much want to do.

It became a day filled with increasing anxiety levels for both of us and for the first time since the initial shock of the diagnosis Macmai was in tears. We sat for a long time arm in arm, hand in hand. Macmai is now thinking of what he may not see or do.  Our daughter is thinking of starting a family later this year and Macmai asked me several times at different stages during the day how many weeks a pregnancy was as though he thought he would not see the child.  My heart felt as if it were breaking.  How utterly wretched this all is.  We are having trees cut back after a big branch dropped during the last storm and even the little bit of cutting that has been done has massively increased the light in the house, would that light could increase in our lives.

The aftermath

The downer came today.  I thought we had escaped the post-chemo down as things were going so well. Today my man spent all day in bed, lethargic and unwell.  The steroids are finished and with their demise, less appetite and far more lethargy and tiredness.  He is feeling the cold so badly.  Today is a mild autumn day, beautifully sunny and cool but not cold.  Macmai is in bed with flannelet pyjamas ( new addition to his wardrobe), two hot water bottles and blankets and a duvet.  I panicked thinking he might be ill with an infection, but no his temperature is fine. He has been there all day sleeping fitfully and apart from breakfast has not eaten nor drunk.  Worrying.  Also he is wanting different foods now, carbohydrates, nuts and fruit.  He is no longer wanting dairy, fat or meat.  I made crumpets for breakfast and in times past he would love butter plus treacle, honey or vegemite.  Today no butter just crumpet and honey. I had been making his coffee on milk, just to increase calories and protein, but he is no longer tolerating that either.  It worries me as to what might be going on  - what is that cancer up to?

We have had home made crumpets now for many years.  I have a little bread making book and it has yielded two family favourites - the crumpets and focaccia.

Crumpets

Ingredients:

·         1tsp/1 packet dried yeast

·         3 cups plain flour

·         1 tsp salt

·         ½ tsp bicarbonate of soda

·         ½ tsp sugar

·         200ml warm milk

·         300ml warm water

Method:

1. sieve flour and bicarb
2. add rest of dry ingredients
3. add milk and water (must be the same temperature as a baby’s bottle for the yeast to grow)
4. mix to a pouring batter consistency – add more water if necessary
5. leave to stand in a warm place until foamy ( about thirty minutes
6. cook in greased crumpet rings in a well greased pan – turn after holes appear in upper surface
7. serve warm with butter 

I spent most of the day outside coming in the check on  my man, hoping that he would be able to spend just an hour or so in the garden and enjoy the glorious day.  It was not to be.  There is a lot to do in the garden in autumn.  Lots of pruning and thinning and the winter/spring bulbs and annuals planted.  Our trees are way out of control and we are having to get tree loppers in to do the heavy pruning. Time passes and trees grow and one suddenly notices just how big they are.  Today I mad inroads on the side beds, shady and sheltered, perfect for clivias, hellebores and bromeliads, as well as ferns.  I noticed today the hellebores are starting to shoot, a sure sign of cold days coming.  Autumn is one of the times for a big mulch with lucerne hay  for warmth and then again in late spring to protect from our savage summers.  Endless days of heat are not my favourite.  Everything becomes so scorched.

However the bed is looking pretty now. The bromeliad flowers have changed from their vibrant red to a pink as they age.  The crab apples in the background are already dropping their leaves, always the first of the deciduous trees.  Good in a way, because it lets light into the winter vegetable garden.

Good news

This has been one of out best weeks.  We saw the oncologist on Monday and had such good results.  Macmai's liver function and tumour markers are massively down and his blood counts were fine for further chemo this week.  The oncologist's words - I have achieved my goal with more quality time with the family.  And Macmai is better in himself, more engaged now and unexpectedly starting to eat more, albeit sporadically and with sudden desires. Grapes and nuts and then gingerbread, half a loaf in one day and the order is in for another. It is now feeling like to me that perhaps we do have a little more time.

So today we were down again to the hospital for another round of oxaliplatin and 5FU.  The drugs all have their little idiosyncrasies. Oxaliplatin causes all sorts of neurological issues, often exacerbated by cold. It is colder now  and on leaving the hospital Macmai had two little transient episodes of hoarseness.  We will need to be careful of cold food and drink over the next few days.  No grapes straight out of the fridge.  They are a happy mob the nursing staff in the Day unit, friendly, cheerful and caring.  It makes such a difference, especially when one spends many hours down there.

The little boys came for a visit on Sunday.  They had been with our son and beautiful daughter-in-law for a picnic lunch at the river.  We haven't seen them as much, too many snotty noses and bubbly bottoms is a bit of an infection risk.  We sat outside for tea in the garden in the lovely Autumn afternoon light that makes the back garden a place of great peace and traquility at this time of year.  Pikelets and special drinks for the little boys and lots of rolling about on the grass.

We had been earlier to a local market with stalls of mainly bric-a-brac and in one I found a darning mushroom.  Not a common sight these days.  It will join the collection of sewing bits and pieces that I have.  My Mum and Macmai's mum always used cowrie shells for darning so I have several of those as well. The boys were fascinated.

CC BY 2.5, https://commons.wikimedia.org/w/index.php?curid=66026

Near perfect days

A full week now post chemo and we have two near perfect days.  Macmai much less tired, more able to concentrate and more engaged in the world around him. Some chemo weeks he is so withdrawn as he battles both the disease and the drugs that I fear we are losing him.  These last few days have not been of those times.

Yesterday he had the energy to walk round the garden and look at the progress in the Autumn clean up.  A low branch of the sapium tree (Sapium sebiferum) is competing with the ponytail (Beaucarnea recurvata) and he had the energy to get the saw and remove the branch.  In the process teaching me to use the reciprocating saw so that in the future I will be able to do the heavier pruning myself - am  just not strong enough to hand saw big branches. So the electric option will be good. We took a few more branches of the sapium and then also did some of the crab apples, which are out of control and starting to adversely impact the vegetable garden.  I now have a pile of branches to cut up for garbage day next week. 

Lo our son, came to visit, always a pleasure.  He and my man have worked together for many years and have an ease of comradeship. Lo has taken over the workshop and it is gradually being sorted and tidied.  In the process all sorts of treasures that my magpie man has stored over a lifetime have been unearthed. The two share an artistic bent and spent a happy hour discussing options for the treasure.  It is sad that though Macmai wants so much to be up and doing he just does not have the strength to follow through on the multitude of ideas buzzing round his mind. We shared a meal, beans for the boys, a family favourite for all except me, and balsamic and basil tomatoes on toast for me.  It was the biggest amount of food my man has had in days. Though food and weight loss is a constant worry for me. He is just not managing the calories.  Sadly it seems that he is becoming less tolerant of dairy and fat. I suppose that is indicative of progression of his liver disease. A double edged sword as dairy and fat are the cornerstone of dietitian recommendations to maintain or increase weight and the disease is taking away this option and with it some of the resilience to tolerate the chemo and fight the disease. But no more of this ...... let me rather dwell on the good and beautiful .

The mowing man came and now the hedge is trimmed ready for the winter annuals and bulbs to be planted in front and the the lawn is looking very dapper.   Another two weeks and the garden should be back to about its best.  The weather is so glorious at present, just a nip in the air at night but beautiful sunny days. The vegetable garden is starting to produce again. Lettuce for salad tonight and basil for the tomatoes.  Mid summer is so hot here that everything shrivels, especially in the afternoon sun as the garden is west facing.

We sat together in the evening, my man tucked up in bed, dozing in and out of the morphine haze from his night time pain meds.  His lymph node metastases were causing  positional pain and broken sleep so more morphine at night is needed. Hopefully the chemo is helping this.  I sit beside him in our bed and listen to his thoughts in his wakeful moments and to his breathing as he slips off. Very companionable.  In earlier months he spent a lot of time in the arm chair in the lounge and I would sit at the improvised table with the jigsaw board and do battle with the 2000 pieces, but he has not sat there for weeks and the battle of the pieces has slowed down to five or so pieces a day.  Now I knit and have a vest nearing completion, with just the arm hole and front borders to do.  Circular knitting needles required for this - a new experience for me. So there I was painstakingly picking up 349  yes 349 stitches all the way round the front edge and starting to knit the first difficult row of those many stitches, when pop went the plastic tube and the stitches were lost.  In my ignorance of circular needles and in the lack of selection  in the shop I had not realised that circular needles have two variables; length of connector tubing as well as gauge. So now I have several options  and tonight repeated the exercise as painstakingly as before but success this time with three of the thirteen very long rows done. 

We have some very old friends from our earliest days in this country with shared memories of our children young and growing to adulthood, of shared weddings and now shared grandchildren. Special friends for people like us, who have lost a country and our shared childhoods and school and young adult friends.  I have great envy of people who have a lifelong history in one place.

Today we visited Aitch and Dee for an elegant morning tea.  Aitch is a collector with an amazing knowledge of china, silver glass and the customs that went with it all, an interest that both Macmai and I share.  We can sit for hours discussing all the in and outs of it all and have great delight in sharing our finds.  How the internet has changed the horizons of the antique collector. We also share an interest in plants and gardens and do a lot of plant and cutting sharing. Recently Aitch has acquired a passion for fuchsias and I am the happy recipient of many plants grown from cuttings.  Though I might add my success with fuchsias in the past has been notable for plant death. 

Macmai had a craving for drop scones today so I made some as our contribution to the tea, which we had in their Victorian lounge, full of some of Aitch's collections, silver tea pot, pretty tea-set and hand embroidered linen.  Such an elegant setting and so enjoyable. 

The drop scone (pikelet in our adopted country) recipe came from the mother of our landlady. We lived in a little cottage on a farm a decade or so ago. It is good to share tried and trusted recipes especially one that has served generations.  So here it is:

Mrs MacDonald’s Pikelets

  

Ingredients:

·        2 eggs

·        60 ml sugar

·        1 desertspoon syrup

·        1 tablespoon melted butter

·        1 cup milk

·        2 cups SR flour

Method: 

beat eggs and sugar well

add syrup and butter

add milk and flour alternately, with additional milk if necessary to make a pouring mixture

cook spoonfuls in a pan , flipping over when air bubbles form

Good days

We have had two reasonable days. They have been idyllic Autumn days, warm but not hot, ideal for being outside. My man is not as tired and has sat outside in the garden whilst I have been doing the Autumn pruning and pulling and replanting the annuals.  We like colour in our predominant green garden.  This summer the zinnias and dahlias have been the standouts.  Macmai like his Mum loves oranges and yellows and has been taken with the straggly effect of  cactus zinnia variety. They are perfect for the vase jug he bought several years ago.  I will keep seeds and replant next year in memory of these days.

 He is getting worryingly skinny.  The disease or the chemo or most likely both has taken away completely his desire for food.  It is all too much.  He talks about food, thinks about it, dips into recipe books but when it comes to the eating it is no go.  There will be weight loss when we go back to hospital next week.  It is a horrible disease this that takes and takes until there is just nothing left. 

I have started taking photographs again, one of my hobbies.  For weeks I have not had the heart, and now I want to record and remember.  I am becoming scared of an empty future, a long emptiness.  He is weaker, though better in himself, talking more, full of ideas of things he wants to do.  This morning we lay in bed looking at the incredible art that has been done with scrap metal and he was expounding his vision for what to do with some copper he has. I just wish there was time.  The closest I have come to despair was when we had friends round and Macmai was well enough to comand the conversation with his stories and someone said 'you should write a book'.  There is no time for that.

So today like our sky tonight with a coming storm , some bright spots in the long darkness, for which I am truly grateful.

Another day over

Today promised so much, but sadly did not deliver.  Macmai woke well, seemingly not in a post chemo lull so we went out to breakfast at a delightful local bakery, in  a beautiful sandstone building, that was once a prison.  Sadly chemo decided no meal today,  disappointing as last time it was such an enjoyable experience.  Doubly sad as we heard our favourite chef's tale of her marriage breakup and the destruction of a lifetime's work and rending apart of a family,  all for a summer of madness, which no doubt will be followed by regret. So no more duck for Christmas. 

One of the really difficult things about this illness is the tiredness and that somehow even all those many hours of rest and sleep give little benefit.  It is also very deceiving as one believes one can achieve so much and one wants to do all these things and then fatigue overcomes one. I sit and knit whilst sleep and opioids overtake my man, a waistcoat nearly completed.  We bought the wool in Adelaide, when we were away. I don't want to think it was our last away. There are great wool shops in the colder southern states.  I can spend hours browsing and feeling wool, such a tactile medium. The shops are all colour and texture and possibilities for new projects, the stuff that dreams are made of.

 He is not up at present much now so the big jigsaw, an earlier project,  remains unfinished by his chair for when he returns. The big, yet to be filled sky is too much to be tackled alone, especially when progress is slow.  All those blues with bits of white cloud look much the same. And looking at it I am reminded of oft used analogy of how drugs and receptors work. So much a part of my life's work.

In the quietness of the day, when the packs for work were checked I wandered out into the garden with the camera for even though the day is wintery  and overcast the flowers are bright.  There are red Guzmania bromeliads  flowering right through out the garden. Named after A Spanish naturalist Anastatsio Guzman who died in 1807, whilst on an expedition in Ecuador. How intrepid were those men to venture out into the unknown.  In another time and space Macmai would have been one of those, ever interested in the new and unknown and always adventurous. He would have enjoyed life as an 18th century man, but he has often said not the smell of that century.

THE BEGINNING

THE BEGINNING

Last December we, our family, moved to two seconds to midnight with an unexpected diagnosis and poor prognosis. Like most others in this situation we were devastated, gutted and numbed and are now living in that no man's land alternating between hope at times but also great despair, with no real time line except that there is not much time. The medical reality softened with jargon - symptom treatment with more time with the family all giving a fairy like quality to a stark reality.

We all deal differently with these things and I have spent  months emerging from the numbness to an incapacity of even beginning to imagine the after life and an almost insane desire to cling onto every minute of the now. Introverts like quietness and thinking, being with people, listening but not commanding the conversation and sometimes not even being an active part of the conversation so verbalizing a situation like ours is to say the least, difficult. I have decided to write about our journey into the long blackness as it is easier for me than verbalisation and I might be able in this way to come to terms with a horrible reality.  So whenever time allows I will chart our journey so that in the hereafter I will be able to come back and have the essence of the very precious time we have left.

Today we spent several hours at the hospital to have the chemotherapy pump removed.  Clever little machines, with a soothing chirp every minute or so just to remind one the pump is still working.That sound will be with me for ever. Because of the little pump we spent hours rather than days at the hospital, less infection risk and our time our own for the most part, not part of a ward routine as an inpatient. Certainly a bonus.  Third cycle in this bout of chemotherapy over and so far so good.  Flurouracil and oxaliplatin  are not the kindest of companions. Chemotherapy has come a long way since the start of my career in the world of drugs.  Perhaps the biggest change has been the emphasis on lessening side effects and controlling symptoms. We have truly come a very long way. Little or no nausea  for highly emetic drugs is a big indicator of progress. So here I sit trying to make sense of this all in the wee hours, whilst our man sleeps to start the recovery from the drugs and sadly just as he is able to do a little more it will be time for the next bout.  Every second Wednesday comes round quickly.

There are blessings.  We live now in a country with good affordable healthcare.  With many, many people in the various arms of healthcare  trying hard to help and heal.  The resources are here.  The hospitals are clean and efficient.  There are clean syringes, safe blood, sufficient medications and good professionals.  People care.  Sadly where we grew up that is not the case. There is very little of anything.  How much worse would our bad situation be if we had not made the decision to put behind us all we had known and take a blind leap forward to start a new life in a new country.  For this I am thankful each and every day.  And especially thankful to the country, which chose to allow us to make our home here.  I hope in some measure we have repaid the trust.

And so until next time  . . . . . . . .  just flowers from the garden - beautiful, peaceful and always healing for the soul. We always grow salvias through the summer, tough hardy plants that easily withstand our hot summers. This week the salvias will make way for poppies, which give so much colour to dark winter days. I anticipate and then enjoy their brightness each and every year. This year the dahlias have had an outstanding season and worked so well in their new home.  They have brought so many bees into the garden. A good thing. They are such busy creatures hovering from flower to flower on an endless mission to feed and service their queen. I can spend hours watching and photographing them.