Wednesday, 27 November 2013

Algy's Demise - On Saying The Final Goodbye.

Algy's Demise - On Saying The Final Goodbye.

Somewhere here I have blogged some prattle about people's reactions and actions in dealing with a loved one who is dying, plus what I have witnessed in hospitals, that did not quite fit in with the Elizabeth Kubler-Ross model, or maybe they did. In any event I unwittingly did Ms Kubler-Ross a bit of a disservice.

This entry is going to be about the 'D' word again so be warned. It's not going to be terribly cheerful as again it will be stuffed with emotion, some repetition and probably the hardest thing for me to write with any degree of real honesty.

I wonder how many of you have faced the loss of a loved one, in the fact of being confronted with a diagnosis and prognosis that essentially says "that's it, we can do no more."? How many of you are facing that now with your own diagnosis? I have experienced the first both as a professional and on a personal level but will be honest and tell you I have tried hard not to think too much about the latter.

As said before in my career, I have been around death quite a bit (hopefully not as a cause of!) from that horrible moment when a patient and their loved ones are informed there is nothing more that can be done to the point when death has occurred. And also again, I have considered taking care of the dying a privilege as that is the last thing I can do for that person and hope that at least there has been a semblance of dignity before the final breath has been drawn. I have been there when a machine has had to be switched off, when the 'line goes flat' after thirty minutes or so of desperately trying to resuscitate a patient, or offset some other life threatening condition, to the peaceful gently holding a hand of a much loved elder person whose life was drawing to a close after many years on this planet.

You would think after all those experiences, I would be like one of those serene sorts who would encompass a passing with the philosophical air, a comforting word with a sigh. And yes, I have managed to keep my voice level, attend to the needs of those who are left behind, being practical, not too overly sentimental and I hope able to reassure people that a) it's ok to be sad and to cry and b) those left behind (usually) have the best interests and love for the deceased which can make letting go a tough deal, no matter how expected the passing. I have been a source of strength and comfort, so I have been told, but also have had my fare share of running in to the sluice room or treatment room to shed a few tears myself. What chokes me up is when I see others starting to cry or become upset, especially when the news is sudden for example when a relative has been informed their loved one has taken ill, to arrive and find that sadly their loved one has died. The resulting shock is indescribable and for all the best will in the world, there is never any 'easy' way of delivering the news and dealing with the aftermath.

But also there has been a level of maturity that has developed over the years, of experiences and helping my colleagues deal with the situation, especially junior staff who are starting out on their career with the hopes of being healers, but who have to also understand that death is a part of life, that not everyone is going to make it, or peacefully or otherwise pass from this life. They will have to learn about dealing with the dread of phoning someone at 3am to break the bad news, or face to face in a waiting room somewhere be it to inform someone of the death of a spouse, relative of an older person or God forbid - and I have been there to see this - being informed of the death of a child. Also they have to learn there *is* a time to die, that none of us are built to last forever and 'life saving' options are not always the most appropriate options to seek.

But none of that has helped me deal with this terribly well in my personal life. It is true when you have professional face, it can shield you to a certain extent as often there isn't the time to contemplate the full impact of what has happened as there is more to be done with the living who also need you. That's not to say there are no feelings, but just the fact there isn't time to express or contemplate them.

There has been the time, too much time to contemplate that someone close to me has a limited life span left, and the feeling of helplessness that I have felt inside while trying to be the good strong friend and bring comfort to those who are dying. I am known to be quite honest in conversation as those I have talked to often have told me things they would not want to anyone else to hear, and on one occasion, who needed to hear I acknowledged they knew they were dying.

One of the very first entries to this blog, I wrote about my friend Veronica who died from a glioblastoma multiform brain tumour and a conversation we had a couple of months before she died, but I think that conversation was rather one sided as I remember now I did a lot of the talking. But I hoped, and still hope it brought her some comfort.

I had a similar conversation recently with another very dear friend I have known nearly all my adult life and had worked with over the years. And now it's hitting me she has finally gone as I write.

Linda was a fellow nurse, cheeky, stubborn, brooked no nonsense from senior staff, knew her stuff and had a wicked sense of humour. Two years ago she survived breast cancer but in late summer of this year (2013), died from peritoneal cancer which had spread over the lining of her abdomen. No one really knows but this could have been a metastasis from the small cancerous cells found in the lymph nodes of right breast that were successfully treated by surgery, backup radiotherapy and chemotherapy. No one can always foresee if the cells have fired off into other areas of the body or not, except through regular checks.

Lin herself retired from nursing through ill health as she also had arthritis, but I felt she retired from life itself a bit as she was a glass half empty sort of person, whereas I tend to be a half glass full. She spent the remainder of her life sitting at home with her iPad, tobacco and cups of tea close to her side. When Lin had the energy, she would visit her favorite pub close by and enjoyed a lot of Gold Label. At first, her husband tried everything to get Lin to join in other activities but given her energy state and stubbornness, Lin decided otherwise.

But of late, she began to take to her bed, surrounded by her cats whom she loved and stopped eating and only when she began to suffer crippling pain and weakness, Lin allowed herself to be admitted to a local hospital, where she was found to have acities, a condition where fluid builds up in the abdominal cavity for various reasons, one being the presence of a tumour somewhere.

Cutting a very long story short, Lin was found to have multiple cancer nodules across her abdomen and needed up to 3 to 4 litres of fluid drained from her stomach daily as there was no real way to reduce the cancer, which was the cause of the fluid build up. Lin had left her treatment too late I guess, not fully realising what was happening at first but also deep down on realising the extent of her illness, was not prepared to live through another bout of chemotherapy and what have you. She was always straight forward and honest with those around her. Not one to beat about the bush, she wanted to remain in control of her own destiny.

I visited Lin who was in inpatient at Treliske not long before leaving for London to start my radiotherapy, and had a feeling I wouldn't be seeing her again. We chatted about her cancer and Lin was very definite about getting her affairs in order and trying to reassure her husband as well but and I think she knew she was dying at this point. I certainly knew at any rate her condition was too far advanced for any real effective cure. We have both been experienced enough with this type of cancer, to realise after a certain point treatment was usually only palliative.

Mentally, I said goodbye then, but have only just completed that journey earlier today. I wanted to see her one more time before leaving for London but she didn't want to receive any more visitors, so I asked her husband to pass on a message to Lin that I was thinking of her. After two days in London, I got the message to say Lin had been admitted to a local hospice for 'end of life' care as it is known now, and had slipped into unconsciousness. A day after that, I had texted her husband to ask how Lin was, and he had text back to say she had just died.

A part of me was relieved and a bit distant, another part just burst into tears. I am an emotional person and am not capable of doing the 'stuff upper lift' thing, and find as I get older, I am not so able to control my emotions like I used to, not that I was ever very good at that anyway. Lin was the complete opposite I think, taking charge of her situation by making sure a will was completed, wanting and arranging to be baptised, setting her affairs in order and making sure she said goodbye to her husband who was faced with her dying. She wanted no fuss and wished for cremation and to be buried with two cats of theirs who had died in previous years. There is a small pet crematorium and cemetery outside of Penzance, where animals and their human companions can be buried together.

I wish I could have returned to Penzance for her funeral but it would have been a disservice to Lin's memory if I interrupted my radiotherapy and I often joke that if I did, Lin would come back to haunt me. So finally after a long while, Dave and I went to the cemetery at Chyenhall Farm earlier today, had a bit of a domestic over parking and where I planted (not very well) some crocus bulbs on one edge of her grave. I didn't feel too emotional then, but am feeling it now and as always, hate the fact I had to say goodbye and am not very good at accepting it.

My own death? I have a strong faith, but yet I am scared of death, probably the method of it and the separation from those I know and the planet I have inhabited. I have no particular thoughts about the 'salvation of my soul' as I feel the judgement of that lies with the deity I call Heavenly Father. To me an afterlife does exist but that does not make the fact of passing into it any easier to contemplate. I am afraid to die, I don't want to leave, I don't want to be without David, I don't want to be alone. If there is no afterlife, I don't want to become nothing more except a bunch of protons and electrons - but that is an immortality in itself I guess. I don't want to cease to exist and I don't want to miss out on all that will happen afterwards.

I have had to think about these things though. My parents and David's are at an age where their time will be done soon and I would like to think the two of us will be able to deal with that well, but whether in your 50's or five, when a parent dies it can hurt just as much at any age. When you have to deal with the fact a loved one, or indeed your own life span is going to be restricted in some way, that's also lot to deal with. I like to think when my time comes I will have dignity and will be brave, not to dissolve into tears at the thought of my passing, but that is something I cannot guarantee.

But I know even more so now - especially after the discovery of Algy and the fact he or a cousin could still suddenly rise up to put the boot in - I have to start looking at my mortality and accept that I have a lot less years ahead than I have had behind me, and deal with the fact one day I really will have to finally say 'goodbye'.

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