The current belief and thinking of Health Care professionals is that a high-grade brain tumour is a ‘death sentence’ from which there is no hope of a reprieve.
Hence far too many people diagnosed with a high-grade tumour, their loved ones and family are left with a ‘sword of Damocles’ hanging over their head. They then spend their remaining time together waiting for the thread to snap and for the sword to fall. For some people the sword falls far earlier than expected because they give up on living.
In order to survive a traumatic event, we must all have hope.
So, to enable hope to occur Health professionals must stop acting as ‘harbingers of doom and no hope’ and become ‘messengers of bad news, but also hope’.
For example:
‘The bad news is the tumour is a grade 3 or 4, with a prognosis of …. (however long it may be) but you may be able to fight this disease and possibly improve your chances of living beyond the prognosis if you do this……. e.g., change of diet, life style, etc.
I believe if we can enable a paradigm shift to occur in current Health Care professionals belief and thinking, it may well start to improve the survival rates for all of us and those who are/yet to be diagnosed with a high-grade brain tumour.
For far too long there has been no substantial increase in survival rates and this needs to change.
Written by
Tansi75
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Thanks for the reply and the excellent question. I am wondering if NICE could be a starting point via the Brain Tumour Charity and will contact them shortly, once I've drafted an e-mail.🙂
There's a really good YouTube channel called CancerVme. It's definitely viewing cancer in a positive light and GBM thrivers have posted their experiences. Worth checking out
I am a 12 year survivor of a grade 4 glioblastoma, diagnosed & treated in July 2011: when I was 51yrs old, in my front right lobe. The size of a golf ball, looking like a 🍅 tomato
Living in South Manchester, England, having been a tennis coach & tennis player all my working life, a non smoker & non alcohol drinker from age of 45, my lungs kidneys liver & heart all had good functionality.
I never felt that I was fighting cancer, I was just following my medical teams instructions, my medical team were & are fantastic, I had surgery to debulk my tumour shaped tomato, twice in fact, with a small piece ( Tomato stem) left behind that was attached to soft brain tissue, and may have caused more problems to remove in case of damage to attached part of brain area?
Then maximum doses of radiotherapy for 6 weeks, and Oral chemotherapy, the only side effect for me was when I started treatment my hair had started going gray, and on conclusion of treatment the gray hair had gone, and my previously natural colour of light brown had returned- now I’m not promoting products here for the removal of gray hair, just saying😀
I am still under the Care of my wonderful oncologist Catherine McBain and her team at The Christie in Manchester, whom I see once per year for an MRI SCAN and follow up consultation, my small piece of Tumour (tomato stem) shows no change in size, colour, shape nor density. So we count that as a success and normal life goes on, back to tennis after 6 months riding my bike, as driving licence suspended for 2 years! In fact the toughest part of my condition was not being allowed to drive for 2 years, an then the challenge of dealing with the DVLA in getting my driving licence back following successful treatment and no incidents of seizures etc.
My family & friends have been fantastic in supporting me on my 12 year journey of survival,
I currently am well, and do have short & medium term memory lapses, but my long term memory seems intact. We are putting it down to normal ageing related degeneration, with late effect radiotherapy damage, there is not much knowledge about late effect radiotherapy damage, as there aren’t many long term survivors it would seem?
There is an 11 year survivor that I met recently also in the Northwest of England and also under the care of the Christie Hospital in Manchester, he said, there is no joined up thinking nor information sharing between the cancer hospitals in the U.K., and he is trying to create something whereby information can be shared and collated, through a website call Brian, an anagram of 🧠 Brain!
That’s all from me for now, I’ve got a dog to walk
You are so right Tansi. My mum and dad were with me when the doctor's broke the news, and honestly it's been an uphill battle as I feel like the diagnosis was a word curse and they took it right in. I left the room when they asked me if I wanted to 'know how much time I had'. I said no, I didn't. But now my mum/dad my family - they are waiting for it all to go horribly wrong. It's like people talking about me like I am already gone.
Doctor's need some kind of compassion training (or something?) although obv some are better delivering a diagnosis than others.
I know from my own experience that family members can become too wrapped up in what the 'T' word means to them and not for the family member who has the diagnosis.
Well done for saying no to the 'how much time you had' question and getting on with living your life, which is what we did. Throughout out meeting with my oncologist, we maintained our stance that we still had a long life ahead of us and she never tried to dispel our belief. She has been a wonderful supportive person who has always maintained a 'holistic' approach to my treatment, being just as concerned about Margaret's health and welfare as my own.
I appreciate that if must be difficult for oncologists to tell someone they have a high grade brain tumour, some, as you have said, do need to show some compassion, so there is still work to be done to challenge current Health Care Professionals thinking, belief and behaviour regarding high grade tumours.
I am hopeful that during 2024, with the help of the Brain Tumour Charity, we will be able to start that process.
Last year I submitted a painting 'Every Cloud Has a Silver Lining' for the TBTC's Time Art exhibition, which had a bid for £150 when all the art work was auctioned off to raise funds for the charity. Last August I painted a new version of it, which I have attached. I hope you enjoy it.
Stay positive, live life and laugh as much as possible. 😊
I love your painting, powerful statements, thank you for sharing that. Every cloud does have a silver lining and there really has been so many for me in this journey so far.
In all honesty my doctors and the hospital staff have been amazing, I think I was just in shock when they told me (this was post emergency craniotomy) so I probably didn't handle it too well emotionally. Onwards and upwards.
My thoughts are that survivors over the 18 month period are very rare and a change in a health carer thinking won't make a difference. More research and funding for a cure would.I agree that it's not necessary to give a communication of time left. If they can every patient should live each day as it comes each on a unique journey. My husband never wanted to know. He survived 19 months
I hope we can agree to disagree on this. Whilst current statistics available on line might indicate survivors over the 18 month period are very rate, that is not necessary a true picture of what is occurring.
Last August I met with a couple who's husband had reached the 12 year milestone of living beyond his diagnosis and we shared our experiences. Both of us had been diagnosed at the same hospital, had our tumours removed by the same surgeon. Had our treatments at the same hospital and have the same oncologist, who has an 'holistic' approach to treatment.
So the attitude of certain health care professionals can have a very big impact on increasing survival rates.
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