I’ve just finished reading the heart-breaking story of 24 year old Vickie Harvey who sadly lost her battle with Acute myeloid Leukaemia before Christmas 2013. Her family have lodged a formal complaint about the consultant haematologist at Worcester Royal Hospital, Dr Fiona Clark, and how she dealt with Miss Harvey’s and her family’s requests during and at the end of her illness I felt compelled to write my own experience down.
My brother, Jonjo, was a similar age to Vickie when he was diagnosed with Acute Lymphoblastic Leukaemia in December 2006, he was 23. He was also treated at Worcester Royal Hospital where Vickie was and was also under the care of Dr. Clark. On first being diagnosed I remember feeling quite angry and emotional when we were told that Jonjo would have to hear news of his illness and treatment without us in the room with him. I begged the consultant to allow my Dad or brother or even my over-reactive, wailing banshee (at the time) self-go in with him! I can remember it being explained that Jonjo was an adult and had the right to the privacy of being able to ask any questions he may have, alone. Reluctantly, I gave in. I know now it was the emotion of the time that caused my hysteria but do understand, and did almost straight after, that they were right. My brother watched through the crack in the blinds to gauge Jonjo’s reaction to what he was being told. There were lots of nods between Jonjo and the doctor and lip reading of the word “okay” which was reassuring to us, his family. We were never kept in the dark about anything and we were able, at any time, to ask whatever we wanted to and I always felt that time was given to us to do this, despite the severity of the situation and the need to move quickly. I can also vividly remember feeling that the doctors were very cold and almost, dare I say it, unfeeling.
My Dad commented to me about the apparent lack of bedside manner of a couple of doctors. I have had time to reflect since then and take back my comment in light of the fact that these doctors and consultants are employed as the best in their field, as specialists in the world of haematology and blood disorders, including the awful disease that is Leukaemia. They are giving the facts of treatment on a daily basis and have to deliver the worst possible news to families and patients at times. For this to even be possible the facts are all that are required. We, as a family of a leukaemia sufferer were shocked to be told how poorly our loved one was and can empathise with the family of Vickie Harvey but it seems that they are looking for an outlet for their grief in partitioning blame to someone whose job is to give the facts, however hard they may be to take. Mr and Mrs Harvey called Dr Clark “heartless” and her manner “bulling and overbearing” which we never found her to be. The saddest, hardest to bear part of this story; the real tragedy is that this poor girl with a whole life in front of her ended up with this terrible illness in the first place and the fact that it claimed her life. This disease that discriminates against no one, young and old, rich and poor, with no possible way of preventing it is the real villain.
My heart goes out to the family of Vickie Harvey and I sincerely hope they find comfort in the beautiful memories they have of their daughter.
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I decided to browse the wonderful world, wide, web in the hope of finding some inspiring stories or artwork to kick off my first blog of 2014. I stumbled across this fantastic illustration which cleverly depicts the often awkwardness experienced from talking to people who are battling cancer. The piece was put together by Jo Hilder - a cancer survivor who, since overcoming her illness (Non-Hodgkin's Lymphoma) in 2004, has become part of the Cancer Council NSW organisation in Australia.
The illustration, in my opinion, really helps covey how a patient diagnosed with cancer can experience such a dichotomy of other people's thoughts, feelings and questions. It begs the question; What do you say to someone who has cancer? That is a question that possibly cannot be defined with a single answer. It must depend on the individuals involved - some may find humour a release, some may not wish to acknowledge the disease itself, some may pour their heart out and be a complete open book about things. The latter was my chosen method, for what it's worth. People often want to help - but do not realise just how -and this is perfectly normal. The experience of cancer to a friend, loved one or relative can be extremely difficult to comprehend and often people are afraid of discussing the very reason they are visiting their friend, the elephant in the room, the cancer.
The illustration cleverly annotates the questions and thoughts laid down, in red - and almost acts as the 'voice of reason' if you will, like an omnipotent presence that can see the situation for what it is and subsequently narrate the audience throughout this 'journey'.
I think this artwork is an excellent depiction of the journey of a patient told through the things people say. Whilst the annotations make it seem almost light-hearted in tone, there is perhaps an underlying true sentiment to the overall cluster of comments, confusion and the mixture of not knowing what to say. Words such as 'That's terrible and 'I'm sorry' along with the small gestures such as 'hugs and other stuff', 'transport' and 'home help' all covey the confusion, sentiments thoughts which conjure up a blueprint of how to talk to someone who has cancer.
Chances are if you haven't experienced cancer yourself then you may well know someone who has - and i'm sure there's something for everyone to take heed of in this fantastic illustration.
Find out more about Jo Hilder here
Bpositive Support & Information blog
A mixture of insightful comments, posts and general 'blogging' from various Bpositive contributors