Monday, 6 June 2011

The Sorry Tale So Far. An Introduction of Sorts...

In March of this year, I wrote a long piece about brain tumours for our local newspaper 'The Cornishman' placing the original article here first. It was accepted and after a lot of editing on their part (I seem incapable of using one word, where 12 will do) was published.

Here it is in it's entirety, the unedited version before inclusion to The Cornishman

"I'm not sure how many of you are aware of this, but March 2011 is Brain Tumour Awareness month in the UK.

This is more personal to me as I actually have one sitting in my head which has probably been there for years. I first became aware of this after I had keeled over on duty, when working as a Staff Nurse at West Cornwall Hospital in April 2010.

For a couple of weeks beforehand, I had begun to suffer acute intense bouts of dizziness but plodded on as one does, because I didn't want to let my colleagues and patients down. I also wanted to avoid racking up too many points on the 'Bradley Scale' which measures the sickness absences of an employee, having already added to the pile after a dreadful winter of flu, bronchitis and what have you. I was seen in the Casualty Department and sent home after, and expected to be back at work in a few days but instead never got to return to clinical practice at all as a Registered Nurse.

Time went on, and even after medication and a simple procedure by my GP which did alleviate some of the more severe symptoms, I still found after three months that I was unsteady on my feet, prone to dreadful fatigue and needed a stick to walk with so I could have a sense of balance and be reminded where the ground is. I did have an inner ear infection but after this had resolved I still had a sense of disorientation, being unsteady and constantly tired.

After three months of not feeling any better or seeing any improvement in my condition, I was referred to the Ear, Nose and Throat department at St Michael's Hospital in Hayle. There I was given a hearing test and was examined by a very bright and switched on Doctor, who also tested my balance and reflexes. When I nearly fell on her and my dear husband, she had me referred for a CT scan and then to be followed up by the local neurologists.

During the time it took to have the scan, I worked hard at trying to be more independent and worried about being off sick from work for so long as then it was getting to be about four months. I seemed to be taking one step forward and many steps back, not being able to get past a certain point. I would range from feeling unsteady to outright not being able to get out of bed due to exhaustion. A similar event had occurred back in 2006, but that was put down to high blood pressure but did eventually clear after a couple of months. This was different.

The CT scan was done then I found myself suddenly booked in for an MRI scan at Treliske Hospital and had an appointment to see the ENT Consultant within 5 days after the scan. He told me that a 'space occupying lesion' was found tucked in under my brain near an area called the Pons. He wasn't sure what it was and was going to refer me to the team at Derriford Hospital.

I did manage to get back to work in October of last year, not to my original post, but in a temporary post in Medical Records. This was actually a blessing because I could work in a quiet stress free area and be able to leave if needed. It was on one level and had lift access. It was hoped that I could gradually get back in to working full time and recover enough to return to the ward.

However, on November 5th 2010, I was seen at Derriford and the specialist there showed me my MRI scan in more detail. What was found was a Meningioma, a type of brain tumour that had grown from a membrane that surrounds the brain and spinal cord, enough to start deforming the part of the brain where the balance, hearing and sight nerves congregate. He was 90% sure that the tumour was benign but could not tell me if I would recover fully. Where it is, is very difficult to access so surgery would not be possible.

The only other option is to consider radiotherapy, either as a single dose or in divided doses given over a longer period of time. I asked about my career and all the consultant could do was shrug his shoulders. I continued to work in my temporary job but did not improve and was assessed not safe to work on any clinical area. My little beast has not only left me with a mobility problem but has also in the past few days ended a 32 year career in nursing.

I am faced with termination of contract due to ill health, and the prospect of losing my home as what little benefits I might receive will certainly not cover the cost of the mortgage and other bills. I might get a small pension on the grounds of ill health but that will be down to the Department of Work and Pensions, since I have to prove I can no longer permanently work in the NHS. I am still waiting to hear if my tumour will be treated, which means hopefully arrested in growth and maybe reduced in size, but it will never be removed.

Since I haven't been able to practice as a nurse for over a year, I will not be able to re register in May and even though I am willing to work, I doubt if anyone will take on a wobbly 50 year old woman with long term health problems. I do know though that my tumour, as serious as it is, will not kill me in the foreseeable future.

Unlike what happened to a dear lady called Veronica Head.

Veronica was a neighbour and a friend of mine. A single mum, she had moved in next door with her three teenage children and we had struck up a friendship. We looked after each other's pets and generally had fun. Veronica was a humble, sweet lady who not only looked after her three younger growing children (an older daughter lived out of county), taught piano forte, but was also studying for a Bachelor's degree in Music with the Open University.

She was bright, funny and kind but also lacking a lot of self esteem after two failed marriages and a failed relationship. At times she seemed to be overwhelmed by events in her life and became increasingly convinced an ex-husband was going to take her children from her. This would be more significant later on as it was a symptom of an illness that no one was aware of at the time. Veronica also had problems over the years with hearing difficulties, fatigue and other occasional sensory problems but she soldiered on for her family, generally not wanting to be a trouble to anyone.

Eventually Veronica and her family moved to a larger house close by yet we lost contact for a little while. Occasionally we would see each other and pay the odd visit, but generally got on with our lives. Then one day, out of the blue she collapsed with a seizure and was taken to West Cornwall after a bit of a delay. There she was admitted and was seen by another switched on doctor who referred her to Derriford Hospital in Plymouth for an urgent MRI scan, this being a few years before Cornwall acquired its own scanner. While there, a sinister change had been picked up on the scan and an emergency biopsy had been performed.

I was working at Poltair Hospital at the time and will never forget the day I received a phone call asking me to come to West Cornwall to see Veronica, where she had been transferred from Derriford to recuperate from her operation. On arrival I found her family and other friends there with her. Her son who was 14 at the time told me that his mum had cancer as he left the room, the biopsy had found a huge cancerous brain tumour that was essentially untreatable. We both shed a few tears that day.

Eventually Veronica was sent home, but became isolated with only her children to care for her. Concerned friends, myself included, contacted the MacMillan nursing service and Occupational Therapists. A friend also contacted Veronica's Sister Christine, who travelled down from Scotland to take over Veronica's care.

Veronica remained at home through most of her illness and was treated with steroids to try and reduce the worst effects of her tumour. Friends helped where possible and care was provided in part by social services. Funds were raised to send Veronica on holiday but sadly her poor state of health would not permit this.
Eventually Veronica became too ill to stay at home and spent a fair time in West Cornwall Hospital until her future care could be sorted. One of the most painful moments of my life was having a conversation with Veronica who just wanted to be able to talk openly about her feelings and her impending death. Although she could be vague at times, Veronica knew she was dying. The conversation was brutally honest, yet beautiful as well because I think it did help her to find some peace and closure for herself.

A few weeks before the Christmas period of that year, Veronica was moved to a local nursing home who also allowed her old faithful Labrador to stay with her. My final visit a few days before Christmas saw Veronica sleepy but comfortable with her sister by her side.

On December 23rd that year Veronica took a turn for the worse. I was due to go sit with her but sadly before I could go we received a phone call to say she had passed away.

Veronica was only 48 years old when she died.

Her funeral at St Mary's Church in Penzance was attended by over 350 people; such was her popularity and the number of lives and hearts she had touched during her lifetime and final battle with her illness. She is still missed to this day and I can honestly say I still grieve for her now after all this time. She is one of three people I have known since living in Cornwall from 1981 who have died from this illness and know of others who have survived brain tumours similar to my own.

This is the thing about brain tumours even eight or so years later.

Despite the fact that diagnostic machines are more advanced and able to detect tumours more easily, brain tumours are still not being picked up until fairly late in development. They're rare beasts (I have one of the rarer ones, and even though 'benign' still comes under the care of an oncologist. 5% of meningiomas can also be malignant), research is sparse and not much is known about them, their processes poorly understood by the medical community at large.

About 1 person in 50,000 to 100,000 will develop one and it has been found that while the incidence of survival for most cancers is on the increase, deaths in young people under the age of 50 due to brain tumours is also increasing. It is also estimated that there will be a 25% increase in brain tumour incidences in older people over the next few years. Often this is being misdiagnosed as other ailments such as strokes and such.

It makes me think that with any neurological condition, CT and MRI scans need to be routinely done, promptly so and not just after a medical practitioner has made a referral to a specialist.

A greater awareness of symptoms such as persistent headaches, hearing and visual changes, numbness or sudden dysfunction of limbs, changes in personality, sensory changes etc is needed both as standalone and combined symptoms. Some will not have any symptoms at all until the tumour has grown enough to start compressing the brain or infiltrated enough to cause sufficient damage, with the result that collapses and seizures can occur as first symptoms.

I have thought a lot about Veronica these last few months and will always wonder if she had been seen by a more 'switched on' medical professional earlier in her life, she might have been given a better chance to survive and recover from her brain tumour.

Sites of interest

Facebook - Cornwall Headliners Brain Tumour Support Page.

Brain Tumour Awareness Month runs throughout March 2011."

I wanted to highlight two things, the first being about the existence of brain tumours themeselves and second, to bring to the attention of the public, the effect the conditions can have on peoples lives. I wanted to compare my tale with that of my dear friend who was killed by hers at too early an age.

There was a favourable response, with a fair number commenting on the article which ploeased me but since then I have been concerned that I did not want the article to be a 'feel sorry for me' thing. Feel sorry for me if you must after all sympathy is *very* nice to have, but it would not help my ego as I don't want it to become larger than my morbidly obese frame.

However, the impact of even a small benign brain tumour has to be recognised and as I have been finding out these last three months since being finally dismissed from my post, can be hideous to say the least. First up, there is the cold fact now that my meningioma may not be the cause of the vertigo I still feel after fourteeen months from collapsing at work. Further consultations with an Ear Nose and Throat surgeon have shed no further light on what the cause of this could be, but it was his considered opinion that the meningioma is only an 'incidental find'. It hasn't increased in size so the Neurology Department where I am being monitored have no real interest in seeing me agian or input save for another MRI scan in February 2012.

Whilst I am delighted not to be dying, I still have one *huge* problem that has not been acknowledged by either consultant in their medical notes, and that is THE NATIONAL HEALTH SERVICE DO NOT ALLOW NURSES WITH BALANCE ISSUES AND WALKING STICKS TO WORK IN CLINICAL AREAS!!!! This is the main reason why I have been fired from my job after being advised to apply for consideration for early retirement on ill health grounds. So I have done that and all seem to think it's a synch that I'll get it. But the problem is one has to have the evidence to back up a claim that either one cannot ever do their current job ever again before retirement, or ever be able to work in ANY job ever again before retirement. My GP has been supportive and filled out medical bit of the application form, however I don't think it will be enough and this has caused huge delays.

The other problem of course is how one can still pay the bills. In short, one can't. I had to fight to get my full 12 weeks in leiu of notice pay that one is entitled to if having worked continuously in the NHS for 12 years or more. I nearly became unstuck as now the individual NHS trusts now only recognise service with their organisation rather than continual service in the NHS as a whole. So whoever it was that decided at the last minute to let me have my full 12 weeks has my eternal grateful thanks.

But after those 12 weeks run dry, which mine will be doing in about 10 days, what then?

Trouble. Big, big, big *huge* potential to lose one's home of twenty years type trouble.

Will tell all about my experiences with the UK benefits system next time.

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