This surgery is being self-funded because the tumour is in an eloquent area of her brain, the parietal lobe, motor strip and sensory strip in the right side of her brain, she needs an awake craniotomy and intraoperative MRI to remove as much as safely possible. For 6 years she has been under the care of a team in Scotland. At the start of this process it was classed as inoperable, said if they touched it, she could have a stroke. They did offer to do a biopsy and radiation a few years ago but a biopsy doesn’t give an accurate representation of the pathology of the tumour, the small part removed could be a grade 2, a few mm away of the area left could be a grade 3. Early treatment of radiation could cause problems with cognition, memory, further tumours and a number of other problems. The decision was made to watch and wait, with 6 monthly MRI scans. This seems an easy thing to do but it isn’t. It’s not easy to leave a tumour in place in the brain, watching as it continuously grows, albeit slowly, living life in 6 monthly increments knowing at some point it will change to a higher grade, grow faster and inevitably end your life. Pam got a second opinion from a neurosurgeon in London who was recommended by a brain tumour charity. She was told they could remove 90% of her tumour, but she will need to be awake for the surgery so he knows when to stop, so he can see her left hand and foot move and have her talking throughout the surgery which will reduce the risk of damage to her left side and reduce the risks of damage to the left side of her face and ability to talk and swallow. The surgery is high risk at this time but in reality leaving the tumour in place to invade further brain tissue will be even higher risk as they are just waiting for it to change to a higher grade. Going by MRI scans, they suspect that it is an astrocytoma grade 2, but this won’t be confirmed until they do the pathology of the tumour, it could be a higher grade, ogliodendroglioma or another type of glioma. The hospital she is going to does a large number of awake craniotomies and they also have a 3D MRI scanner to locate the exact location of the tumour before surgery, an intra-operative MRI scanner in the theatre, will help to check how much of the tumour has been removed, if there is more that is to be removed before closing up the skull. As from Oct ‘17, the tumour has been growing more than it has been during the 6 months since that last scan. Now is the time to do it. She has asked if the NHS could pay for the operation in England, but as the NHS is devolved in Scotland, they said no, she was born in Scotland, lived there all her life, we are supposed to be better together and all that but they said no even though surgery needs to be done, irrespective of location. So this is how we are trying to fund the operation ourselves. It’s very expensive and certainly not an amount of money she has without selling her home and downsizing. The stress of the pending surgery is enough without having to sell her home and move house on top of that, the tumour is growing and could change grade at any time, if it hasn’t already, so basically a ticking time bomb. To make matters worse Pam also has been diagnosed with MS, she has had to come off her disease modifying drug for the surgery so she is at risk of an MS relapse. The surgery isn’t curative as it will grow back and possibly at a higher grade, but it will buy her more time, create space for the tumour to grow as opposed to invading further brain tissue. The surgery will also buy time for Pam to spend with her family especially her 10 year old daughter and 7 year old granddaughter on whom the effect could be high at such a vulnerable age.
The cost of this surgery is putting extreme financial pressure on the whole extended family and causing much stress at a time when Pammie needs to concentrate on the surgery ahead and getting better.
Every penny donated will help towards these very high medical costs. Please join me in helping the family and wishing Pam every success in her forthcoming surgery.
A little bit about her family
Pam is happily married to Ian, she has a 28 year old daughter Nikki, a 10 year old daughter Becky and a 7 year old granddaughter Caitlin. Pam worked in the electronics/aerospace industry for 11 years building satellites. She went on to work in the mental health field, teaching art/craft, keyboard lessons, one to one support and many more tasks involved in the role within a day centre for people with mental health issues. She became a childminder after the birth of her second daughter, so she could spend more time with Becky and still earn a living, where she cared for a number of children in the area. This is where I met Pam, she cared for my two sons. During this time, she went on to study child care and education at college, once qualified, she gained employment in a top local school as an Early Years Officer. It was at this time she was given the devastating diagnosis of a brain tumour. She continued to work in the school for another year, during this time she was given the additional diagnosis of Multiple Sclerosis, she had no quality of life outside of work as she was so fatigued and in debilitating pain. She had to make the difficult choice of giving up her work, to spend more time with her family, while she still could. Even with having these huge health issues she still tries to help others by volunteering in her daughters’ school assisting them to set up a library.
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