Sam’s ponytail cut-off

‘Lucy has always suffered with the genetic condition Multiple Endocrine Neoplasia Type 1 (MEN1) which has caused her to develop slow growing tumours in endocrine glSam1ands which can secrete excess hormones. As a result she has undergone several operations from infancy into adulthood, and suffered nearly a decade of medical negligence when ignored and written off as a hypochondriac when suffering from the symptoms of excess insulin production before she finally got the endocrine referral she had long requested, leading to her diagnosis and further battles before her life-saving pancreatic surgery. AMEND (Association for Multiple Endocrine Neoplasia Disorders) is the patient support group that has supported Lucy greatly since her diagnosis.

It seems likely that the years of excess insulin production (and the Insulin Growth Factor and blood sugar fluctuations that accompany this) have been a factor in Lucy developing a Glioblastoma Multiform (GBM) tumour which was found by MRI in 2012 following seizures. It was initially diagnosed as an ‘atypical’ cavernoma. The MDT did not feel it was a tumour. The neurosurgeon offered surgery, but no likelihood of any reduction in seizures or language processing symptoms, and with the usual associated risks (including deterioration), and left the decision to Lucy. It took further battles to persuade the GP to refer for a second opinion. in the meantime I had found the National Hospital for Neurology and Neurosurgery and identified it as the ‘go to’ place, but it was finding the Cavernoma Alliance (CAUK) that made the crucial difference, as we attended a Forum event in Holborn and in addition to the support and warm welcome from members, received a consensus of advice that a referral to Mr Neil Kitchen specifying ‘CaverClinic’ would be the best course of action. Mr Kitchen was superbly competent, confident, and caring in his assessment, diagnosis, commitment and skills. He recommended immediate resection and carried it out, returning early from his leave to operate after the first planned date was postponed due to the malfunction of the in theatre MRI scanner.

Sam 2
Sam 4

 

 

 

 

 

 

 

This all explains why I wanted to help these worthy causes. I originally intended to run a half-marathon to raise the money, but my body failed me (maybe in the future). The decision to sacrifice my hair came from friendly cajoling by a few people at work in the run-up to breast cancer awareness day on October 23rd. Others were doing things to raise money for ‘pink day’ and the suggestion was made that I cut my hair. I was not in favour, but realised that there was enough interest to raise some money despite the late decision (2 days before). I did not want to raise money for Cancer Research as we do not really support their approach of funding research into harmful pharmaceuticals that make money for huge corporations and cause many health problems, and they receive huge amounts of money already. However, AMEND and CAUK are genuinely deserving causes that help people at the sharp end in very important ways, but go (relatively) under the radar so to speak, despite sterling work in profile raising. Worthy causes that need my small contribution more than massive established charities. So it was an impulse to lose two years worth of hair.
I offered the chance to hack it off to the highest pledge, and one of the residents at my place of work immediately pledged £20 of his pocket money savings.
Lucy continues to have MRI scans every 3 months and they have all been ‘stable’. Lucy has made dietary and lifestyle changes to reduce her risk of further cancer and though she still has health challenges, is remarkably well given what she has been through.’

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