Although we may be having a tough time - and some of us more than others with more than one health problem to negotiate - I often realise how fortunate I really am to not have (as yet anyway) to deal with cancer or some really nasty terminal illness. I am posting this link to a blog written by a fantastic woman who rides her cycle very frequently on long trips to mark the death of women murdered in domestic violence situations - and raises lots of money for charities. She has done this hundreds of times over the years and continues to despite the terrible pain she is experiencing from her cancer. This is a heartrending account of her mis-diagnosis - or lack of diagnosis - but also very moving as her determination shines through and I think we can all learn a lot from that !!
Please be warned this will likely make you cry - but like me I am sure most of you will be left with great admiration for this wonderful woman - her name is Jean Hatchet and she can be found on twitter if you'd like to seek her out there.
(Although not 'right on' our subject I hope the Moderators consider this a valuable link to include on this forum)
I have just read this and whilst not in tears I am disgusted by her treatment and more importantly her prognosis. The only good bit about this is that the sonographer has to live with his mistake. I wouldn't want to live with that on my shoulders.x
Yes absolutely !!- Jean's lack of or 'mis' diagnosis is a shocking account of what can happen when someone is either incapable or even 'negligent' in their work - something that would have surprised me once - but after reading multiple accounts about medical ineptitude here I am no longer so shocked. Thing is of course some of us may get away with less profound consequences than Jean - and we can only wonder where is the 'accountability' in a situation like hers !??
Oh definitely. I was head of a legal team for the NHS for years and you would be horrified by the mistakes made and very rarely from junior staff!! I went back to my true love of law for mental health patients.
Misdiagnosis is it seems relatively 'common' and in this interview relating to approx 12 million Americans being incorrectly diagnosed each year - this represented about a 5% mark. I suspect it is much higher in actuality as many people will just 'disappear' from systems which do not or cannot (it seems) respond to their needs. This short interview is worth a glimpse as although it is not about misread or mis-interpreted scans it discusses the importance of patients being assertive and the interrelationship between doctor and patient. I have tried to do everything suggested here and at times been ticked off for being 'informed' and/or (too) 'assertive' ...
This was terrible. It reminds me that even when I saw a rheumatologist who should have caught the PMR, it wasn't until my second rheumy that I was finally diagnosed, let alone a slew of doctors before that. But PMR is nothing compared to cancer and what Jean has to go through. So so terrible. She indeed is an inspiration!
Food for many thoughts Rimmy. Domestic Violence was my line of work before my PMR diagnosis. I can say that it was very poisonous. Jean Hatchet is a total inspiration. 💖
Jean Hatchet sure is inspirational - she has done 253 rides as a cyclist for murdered women in the UK since 2016 - these women were all killed by a man they knew !! She never relents and despite everything gets back on her bike as often as she can and has the hashtag: #RideForMurderedWomen
The story is virtually identical to the case of my sister in law, she has now died of cancer at the age of 52. Another friend was told she had constipation, she also died of bowel cancer in her 50s.
How terrible piglette - I wonder who if anybody is keeping a record of all these 'failures' - and the extent of the impact on those left grieving behind. It is both appalling and tragic ...
The amount of misdiagnosis is pretty bad. We had a GP in my village, who has now retired, he was known as Doctor Death! The errors he made were horrendous.
Thank you for your heart warming and inspiring post about others (e.g. Jean Hackett) with possibly Life shortening health conditions, and which might put our daily PMR / GCA struggles into a greater perspective.
As you say, 'determination to survive' is a key determinant in the process of at least coping psychologically and emotionally with serious / chronic illness - even if the outcome is unavoidable.
I agree with you in that, as has been said many times here, Us (PMR / GCA) Lot often have to deal with many co-morbidities in parallel with our unwelcome PMR / GCA Journey.
And, so: I feel that we should all be open minded, kind and sympathetic to those who post here who, whilst not directly reporting PMR GCA-specific issues / questions, all the same need and welcome some helpful guidance as to where and how to access more relevant help, emotional support and dialogue even if via other forums.
And (dare I suggest it!): the same guiding principles should apply for those of Us PMR GCA Lot who wish to share some more light hearted stories and content (even if arguably less relevant?) which might help to soothe the often troubled minds and hearts of others who welcome a temporary distraction from the important but more serious medical stuff of PMR and GCA. As many of you say (sic): 'Laughter and smiles won't cure my illness, but some innocently intended fun can help in coping with my symptoms from day to day''.
I hope this is a helpful contribution to the On / Off Topic debate here.
"And (dare I suggest it!): the same guiding principles should apply"
Yes Mark, but sometimes 'guiding principles' unless collective, are not conducive and can lead to unnecessary conflict and hurt which we must always strive to avoid.
I count my blessings everyday.We have a difficult disease with pain and lifestyle changes but not life threatening if the inflammation is controlled.It helps with coping with my disease if I stay positive.
Thank you for the link. My parents, elderly, and my sil were miss diagnosed with cancer, fobbed off with a useless prescription, sil was in her mid forties. Not good enough.
This post hit me hard right now. Rheumy sent me for a CT scan of chest and abdomen and they incidentally discovered a cyst in my ovary. Rheumy was all over it, and even though outside his specialty immediately sent me for an ultrasound. The cyst is the same size as Jeans. Ultrasound wasn't conclusive so now i sit waiting for an MRI. I, unlike Jean, am very fortunate to have a very caring and thorough GP and Rheumy and hopefully it is nothing or if it is something it was caught early enough. I feel so sad about how her pain was handled.
Such a sad story... I was always under the impression scans, x-rays, mri's and breast screening are always checked by more than one operative, to avoid such misdiagnosis!...
A truly inspirational lady....
Thanks Rimmy, sometimes we need to know, our condition, although a rollercoaster at times, it will🤞eventually burn itself out....
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