The dark night of the soul

Sarah again. Am aware that by now all this may be getting too much for some of you but I find posting on here quite therapeutic (and god knows I could do with some therapy right now! ) so I'm going to start typing and see what happens. Soooooo with a serious "tissues at the ready" warning here goes.

We have now completed a week in the hospice and it looks as though from what the doctors say we may be in for the slightly longer haul rather than the short haul we had anticipated. In my world, as I have already said to some friends, this is rather like being asked to run a marathon when you are already exhausted. I personally am already on my knees and have no idea how long I will need to maintain my current strength or indeed, how I can possibly generate that strength ongoingly. I really have been wondering how much more we can all take.

The first few days in the hospice, as Dave has already said, were spent adjusting to the institutionalised nature of the hospice. As an example, emergency pain relief now takes 15 minutes due to procedures and security, rather than the 30 seconds it took to reach for the bottle and fill the syringe that it did at home, and 15 minutes is a long time when you are in as much pain as Dave. Things like that aside the staff are friendly and supportive and we have gradually got used to things. For me it has been hard to let go as I feel that I know exactly the way Dave likes things done and I still cringe when I see things that, in my world, are not being done quite "right". I also find periods away from the hospice really upsetting. I know that I need a break and some fresh air or sleep, but I know that Dave hates it when I am not there, so a guilt can ensue however hard I try to suppress it. Yet again, I am torn between being with Dave in the hospice and life with Emma at home. We did all stay over at the hospice last night with Emma watching The Matrix whilst Dave gently dozed. Although Dave could not talk much it was lovely to be altogether.

There have been some magical moments as well as some very sad ones at the hospice and we have finally had our Three Musketeer time, uncluttered by visitors. On Sunday afternoon we brought in some bird food and Emma filled the bird feeder and sprinkled the food all over the balcony. Within a short time we watched a host of squirrels and birds come together to feed - a bit like a scene from Snow White or Bambi with snow swirling in the background. On Monday, Howard and Tina came and Tina gave Dave a scalp and hand massage, whilst Howard and I snuggled up on the sofa and chatted. The very presence of Howard and Tina is very spiritual and healing and a great gift to us for which we will always be grateful.

The harder side and the low points have been for me seeing Dave so vulnerable and low. In the 27 years I have known Dave he has consistently been cheerful and fun with only the occasional grumpy moments thrown in. He has been one of those people who can really irritate you by things like singing loudly in the mornings when you are still trying to wake up! And, as most of you know, Dave has continued to be very gung ho throughout his illness. I remember after his first operation when we were told only 50% of people were still alive 5 years after their initial diagnosis of colorectal cancer, whilst I recoiled with horror at this disgraceful statistic (death rates are much higher in the UK than elsewhere in the world), he laughed and said that was pretty good odds! In the last week though he has really struggled, with terrible pain (which the hospice are only just getting on top of) and awful episodes of breathlessness which have made him very anxious. The words Dave and anxious have never in the history of "Daveness" ever been heard together in the same sentence. Emma and I have both been very very distressed to see Dave in this state and for me it has seemed quite hard work to get the staff to understand what a radical change of mood this is for Dave, although as of yesterday things do seem to be moving. There has also been the witnessing of a serious physical decline, almost total loss of mobility and increasing sedation, which though in Dave's best interests, is again almost overwhelming and has resulted in many tears being shed by all of us.

On Monday Howard and Tina left me with a book called "Gentle dying: the simple guide to achieving a peaceful death". I stayed over on my own at the hospice on Monday night whilst Claire looked after Emma at home. I read this very short book from cover to cover whilst Dave slept. It is written by a woman who was the founder of the Hospice of the Heart Trust called Felicity Warner. The book was really interesting to me and I was really pleased to find that I had already been doing a lot of things advocated instinctively. I was particularly drawn to one particular section called "The dark night of the soul". The book describes a phase in the dying process when even the most spiritual people lose and their faith and feel utterly abandoned. Felicity states that "It's as if, for a defined period near the point of death, they (the person) must detach from all comforting belief systems and their direct connection with the divine. It's an utterly desolate experience, empty, bleak and a huge chasm to sink in to". The theory is that this is just part of the dying process and part of final surrender, and that when this is over "the energy shifts from fear to enlightenment and can feel like the sun appearing from behind the clouds". I was interested to see that this phase is thought to hit people with very strong religious or spiritual beliefs very hard, particularly priests and healers. I see Dave as an unqualified, undercover and maverick priest and healer with a lot of the people he meets in the world, so maybe this is why he has been hit particularly hard. I read the section of the book to Dave first thing on Tuesday morning and I hope he will not mind me saying that he flooded with tears as it really seemed to hit the spot regarding what he had been feeling. To think that this may be a phase that all terminally ill people go through seemed to ease some of his anxiety and made him feel a little more normal.

As I sit here tonight having come home for a rest I can only hope that the sun soon appears from behind the clouds soon for him so that he can have the calm and peaceful death he craves. He really has suffered more than enough.