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.