Not everything is black or white……..

As I have mentioned previously, my mother is very ill with a cancer of the mouth and is really quite near the end of her life, or so she has started to hope. Her cancer has spread and she is very weak now.

I am pleased to report that she is having excellent palliative care. Her pain is controlled; she has had the opportunity to spend good time with friends and family; she has forgiven and asked for forgiveness. Technically we have done everything correctly. But dying is not easy, it takes its own time and will not be rushed.

There has been so much in the press about assisted dying and euthanasia lately. I have always been vehemently opposed, believing that with access to good palliative care it shouldn’t be necessary to end one’s life. But it’s all a bit more grey now. I see how my mum is suffering – not because of pain or uncontrollable symptoms – but rather that she is being forced to learn the most incredible patience. The medications that provide symptom relief leave her groggy and frail – she barely gets out of bed. The cancer itself threatens to block her throat and choke her. Apart from little sips of water, she hasn’t had anything to eat or drink by mouth for over 6 months. Palliative care focuses on quality of life and despite our best efforts her quality of life is still quite poor.

I would understand if she made the decision to end her life but know that she won’t. Not because it is still illegal, but because I think in our family we believe that dying is as much part of life as being born; it takes 9 months before a baby is ready to be born, why should dying be any different. There is a certain rite of passage that we must go through to get where we going. Those who lose a loved one suddenly aren’t given enough time to say goodbye or for broken relationships to be healed.

I do not judge those that choose to end their life early and now know more than ever that sometimes, even with the best palliative care, quality of life remains poor. But what I have come to understand that it is all a process; a process that requires a lot of support, active management of symptoms, emotional care and logistical planning. I will never understand why my mother should have to go through this time, but by the time my mother takes her last breath, we will be as ready as we can be.

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Meet Lubanzi…

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Lubanzi is a 2 year old boy that has a rare condition called Menke Kinky Hair Syndrome.  It is a disorder that affects copper levels in the blood, causing changes to the hair, failure to grow and progressive deterioration of the nervous system. He was diagnosed at about 8 months of age. There is no known cure for the condition and his mother and family have had to come to terms with the fact that they will lose him. He is seen monthly at The KZN Children’s Hospital Palliative care clinic by Dr Ambler and the team. Chatting to his mother she said how hard it had been to come to terms with his condition but feels that without our support she would not have been able to accept his prognosis as well as she has. She is so grateful to the whole team for the way they care and support her and Lubanzi. She doesn’t know how long she has left with her boy but she is enjoying the time she has.