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.

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