These days I rarely feel I have a new conversation that I should start, I try to keep up with everyone's news and offer a little information if I think it might help. The title I have given this may have you wondering However I have been deeply touched by some recent postings on how Men have died when their personal battle with this horrid disease is over. For one thing it is incredibly hard to write about it at all but it is also very hard to read about it too, one of those situations where you want to read because you want to know and understand and yet once you have it stays as a troubling thought in your mind. You want to tell the partner, wife, family member or friend who posts just how sad and sorry you are but for some the words choke up so badly you cannot express them at all. Those postings take huge courage and make us all aware of the darkest moments this disease can bring.
Nobody wants to have the end of their life full of pain, anguish and fear so I thought I would try in the best way I can to explain how some steps can be taken to try and reduce or completely avert some or all of these things. I am just so sorry that I could not have done this in such detail as a single conversation sooner. Those familiar with the conversation "Mick's Day of Reckoning" will know that I did post little snippets of this as things happened so now this is me doing it as a complete summary all in this one place.
This is a story from my own personal experience and it involves members of this forum whom in general I will not name but of course they will know who they are. They helped me and Mick at various stages to prepare and cope sometimes unknowingly and to them I am eternally grateful.
The first elephant (as I will call them) happened shortly after Mick's diagnosis and test results came through, PSA 545 and rising rapidly, Gleason 10 and extensive mets in lymph nodes and Bones. Mick specifically advised our Oncologist that he did not want a prognosis and I felt that knowing would make it impossible for me to deal with his battle without showing what I knew. I tried to find someone with similar results anything to help me compare although I had mentally decided that this was probably going to be a futile search. I met up with someone from the forum as I had found an early kindred spirit in my journey. Over coffee she initially shocked me by telling me that things sounded really bad Mick's lack of response to initial HT etc. She asked me if I felt I would be able to have a conversation really early on with Mick about Elephants in the room. I went away thinking it would be impossible to do this just months after Mick had been told the worst news ever. However a few weeks later he surprised me by asking me to sit and go through everything with him, nothing specific at this stage just sharing our thoughts on what we could do to be prepared for his, by now inevitable early death, if it was 6 months a year or 3 years the outcome would still be the same.
We made a list and then decided who would try and deal with what. It covered, finances, communication, funeral wishes, End of Life care and domicile, holiday planning and some special vows we made to each other in case we might need them.
Once that was done we just kept each other informed on any things that were done and ticked things off as we went along.
The second elephant happened very soon afterwards, I read a few posts to Mick from forum members, two who had already passed and one who is still with us today, about facing mortality and making decisions on stopping treatment. This prompted Mick to read all sorts of things he found on the internet about facing death, short stories, articles by philosophers, Stephen Hawking and stories from the trenches of WW1 he said nothing for weeks maybe even a month. Then all of a sudden out of the blue he said that he was not afraid of dying, he reasoned that he had achieved so much in his life and felt that fate was just that ... fate. he just wanted me to know that he was not scared. After that Life rattled along for another 6 months or so with some really good times along the way. Several Newark get togethers and the friendship and camraderie from the forum blossomed into a vital part of our lives. No more talk about elephants in or out of the room for some time to come.
The third elephant came in the hospital after he had suffered his first Spinal cord compression he hated being in the hospital, not that the care was particularly bad but he hated the noise, smells and the fact that it was always hot, unbearably hot. He wanted to come home more than anything and when he developed the life threatening intestinal blockage I swear he fought his way back from that against all odds because he most emphatically did not want to die in there. One of my vows to him was to fight his corner to get him moved to the hospice and so I did just that. He knew that the hospice would do their very best to get him well enough to come home, he also felt that he would be able to have more control over his care and better guidance on the transition from palliative care to end of life care if it was coming to that stage.
The fourth elephant was his decision once he knew that he did not have very much time left at all, to settle a stupid disagreement with our future Son in Law that had started years before and just festered, it was a very emotional time when finally we could all be together as a family united in his last stand. He made our daughter and her partner promise to go ahead with their wedding plans come what may and know that they both had his unreserved blessing .
The fifth elephant was another big decision, which was for him to have a very frank and detailed discussion with one of the fabulous palliative care consultants at the hospice, as always he wanted me there by hs side to hear everything. He asked for a full account of what might happen in the days or possibly weeks before he died, he wanted to know every detail, what it would mean for him in terms of pain and how that would be managed what signs there would be that things were coming to a close etc. He also wanted to know what he could do to have control over all of this. It was a really difficult hour but once it had been done Mick felt liberated. That night I think he slept really well knowing he could actually plan and control his destiny to some degree. In the meantime everything had been arranged and sorted out at home so that he could leave the hospice very soon.
The sixth and penultimate elephant was both of us sitting with the same palliative care consultant and a staff nurse and having them make an informal end of life care plan (this is not an end of life directive as that is a legal document which takes time to draw up and is usually only done in cases where the patient may lose the ability to make decisions for themself) His first stipulation was a DNR agreement. Next the consultant went through a list of things that could happen so that Mick could say if he wanted them to treat for them or not, also if he was prepared to go back to the hospital for treatments that could not be administered at the hospice or at home. He could also choose between any pain being managed in an attempt to keep him as lucid as possible or to have more medication and potentially be asleep most of the time. (As it happens thank God it never came to that choice) He was also able to stipulate that he had first say and if he was incapacitated the decision would be mine. Biggest elephant ever in a room had been successfully evicted and probably the hardest one for us both.
The final elephant was choosing to come home to die, he had always sworn he wanted to be in the hospice but one of the vows I asked him to make with me back at the start was that he could always change his mind about anything and I would make sure it happened. Because of all the other preparation he felt really confident that he would not be in any pain he had suffered none for weeks and with a spine so badly compromised it really was unlikely that he would. If something flared up I had everything I needed on hand or availabe within 30 mins or so from the Marie Curie on call team. At this point he told me that his biggest reason for choosing the hospice had been to protect my feelings about our home, he was so worried that if he died there it would taint it in some way.
In Mick's final week he saw many of his friends from around the country and also those that flew in from America, he spoke with everyone else and through our daughter, made his very last gesture to me, although I would not find out about that until exactly a week after his death when it was my birthday. He was eating well and chatty right up to the final evening and died very peacefully indeed, he just slowly stopped breathing and was gone. I was on my own having sent the night carer home when it was obvious what was going to happen and two phone calls later, first to the hospice at home team who were with me in 20 mins and second a pre arranged call to the one person I will shamelessly name Si Si Superman who was by his bedside within 30 mins to say a final goodbye to his buddy and take good care of me.
Maybe it was his life in the RAF flying and then in training that made him want everything organised in military style, but in absolute truth he made everything so much easier for me and that was one of the kindest and most considerate things a dying man could have done.