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In which I discover I have a brain tumour
Posted by Paul Carpenter
Following my brush with mentalism,
it’s rapidly turned into a running joke about the house – which is just
the way I like it. Everything works just as it ever did. I’m still
forgetful, bumbling, but generally healthy. And aside from enduring the
horrors of public transport it’s been nothing much more than a wrinkle
in the fabric of life.
But today was the day of my follow-up CT scan. Having blithely
assumed that a non-recurrence of symptoms indicated that I would be in
the 60-70% of seizure sufferers for whom the seizure was a
never-explained, one time only event, I fair sauntered into the
hospital.
The
attractive young doctor put me through the scanner, shared a laugh
with me as we discussed my case. A CT scan involves lying perfectly
still on a narrow, unyielding bit of plastic while they put the bit of
you that needs checking through a giant doughnut of plastic and metal.
No sweat. Fifteen minutes of numb bum later, I was released from the
bed. But instantly I sensed a change in a atmosphere. Suddenly I was “Mr
Carpenter,” as she told me to take a seat in the waiting room while she
just spoke to someone.
Two minutes later, I found myself being taken up a corridor and through a door marked “Acute Assessment Unit.”
My stomach flipped.
No-one had yet explained anything to me as I was shuffled from
waiting room to waiting room. My blood was taken. A cannula fitted.
Little electrodes were attached to my skin by bustily blunt and Northern
nurses. I saw my name cropping up on little files and computer screens.
One of the nurses stuck a sticker on her chest with my name on it.
Internally, I wondered what in the name of all hell would lead me to
have my own bloody nurse. I caught wind of the fact that I had been admitted and a bed found for me.
Finally, I found myself sitting in a bare room with 2 disconsolate-looking people, staring at my feet and, for the first time, giving serious
consideration to things. Now I’ve watched more than my fair share of
episodes of House. I know that a mystery diagnosis quickly leads to some
exotic disaster which involves removing the brain via an untested and
highly-dangerous experimental surgery.
My mind ticks over the possibilities. The word I’m most afraid of is
tumour. No-one gets tumours in real life though. That’s the stuff of
Hollyoaks cliffhangers, surely? The minutes tick by and I start to pen a
book in my head of sage advice I can leave for the kids when I’m dead
and they’re old enough to read. I’ve ticked off school (“don’t pay it
too much attention”) food (“eat well and eat plenty”) and sex (“boys lie
to girls to get it. Girls lie to boys about how much they like it”)
when a doctor finally comes to see me.
She’s not a neurologist. But she’s spoken to the neurologist and he’s
asked her to tell me the news so I’m not sat here worrying for for any
longer. Her first words:
“You’ve got a brain tumour…”
Oh. That’s kind of numbing. As it percolates into the dimmer recesses
of my consciousness, I pick up the words “benign” and “early”. This may
not be the horror show I have built up in my head.
Eventually having seen a neurologist and consulted Google, it transpires that I have meningioma.
It’s a type of tumour that grows in the membrane around the brain and
can grow for many years until it’s detected – often by accident when a
CT scan is performed for an unrelated matter. The tumour grows in close
proximity to the brain and thus can apply pressure leading to seizures
(me) and, ultimately, to severe cranial pressure (some other poor sod) which
can lead to things such as personality disorders.
The critical thing is that only rarely are meningiomas malignant.
There are various treatment courses open, but the most common is an
honest-to-goodness brain op, whereupon your scalp is shaved and peeled
back, your skull cut open, and your brain fiddled with.
So that’s probably what I’m looking forward to. Most people I’ve
spoken to don’t believe this, but I’m actually not worried. I don’t see
the point – it’s just a fact with potential consequences. But that could
apply to a whole load of things in life in general and who’s got the
mental energy to worry about things?
Still, I am in the dramatic position to able to say – for a matter of
weeks or months at least – “I have a brain tumour”. And not everyone
can do that!
2Harry's story Following a serious car crash in August 2002, an MRI scan revealed by chance the presence of a large brain tumour. I was informed that it was a meningioma, and almost certainly non-malignant, i.e. non-cancerous. I knew precious little about brain tumours, but luckily I have a brother and sister who are both GPs and was able to ask them about the next steps and the likely outcomes. I was also receiving assistance from an occupational therapist who told me about Meningioma UK. Further contact with Meningioma UK support provided me with a great deal of helpful advice, concerning not only information on what a meningioma actually is but also what forms of treatment are used and where these can be found.
Probably one of the most amazing facts is that I had no noticeable symptoms of the meningioma, except for some slight problems with balance when playing tennis. This was thought to be a result of the car accident, but, with hindsight, it is now likely that some of the symptoms of the car crash masked the symptoms of the meningioma.
Carol and I (at the time I was 54) discussed the options and decided that the only real solution was surgery. Together with my local GP, we opted for treatment at the Frenchay Hospital in Bristol. Following a further MRI scan, an appointment was made in March 2005 with Prof. Coakham, who advised that my tumour was in fact divided into two parts. The largest part would be “relatively easy” to remove by surgery, but the smaller part, which extended into the temporal lobe, would be more difficult to deal with and for which there was a greater risk of possible side effects.
Surgery took place in the first week of August. Prof. Coakham had allayed some of my fears, but I was still very nervous about the operation itself; however, the nursing staff at the Frenchay were very good and most supportive. The operation to remove the larger part of the meningioma was a success; I did have some side effects, but these cleared up after a couple of weeks.
The next stage was how to deal with the smaller part of the tumour. Fractionated stereotactic radiotherapy at the Oncology Centre of the Bristol BRI was recommended, and this was discussed with their neuro-oncologist together with further MRI scans to determine more precisely the size and exact location of the remaining part of the tumour. Unfortunately, the remaining part of the tumour proved to be too large to be dealt with only by radiotherapy, so it was back to the Frenchay hospital for a further operation by Prof Coakham. This took place in November with the aim of safely reducing the remaining tumour to a size that could be dealt with by the radiotherapy. The operation was again a success, and once back at home I was again active even quicker than after the first operation.
The final stage was therefore the radiotherapy treatment, which I started in May/June 2006. Due to the good advice from the Meningioma UK, I was aware of what was likely to be involved, but I was still really scared about the idea that radiotherapy treatment would be carried out while I was awake. Fortunately, the radiotherapy team at the Bristol BRI were truly fantastic by carefully explaining, without rushing, each and every step of the procedures, and answering my many questions.
Fractionated stereotactic radiotherapy means that you receive only very small doses of radiation which is carefully planned and directed by specialist equipment that is attached to a standard radiotherapy machine. The planning of the direction of the beams is prepared by a computer programme, but to ensure that the beams only reach the parts that they are intended to reach, your head has to be held firm in a special frame which is then fixed securely to the treatment table while the radiotherapy machine works. In my case, I received the beams in two different “segments/arcs” that in each case lasted for only approx 25 seconds. But to ensure that the frame fitted to your head is in exactly the same position each day, a special test is carried out in advance of each treatment. Despite these necessary tests, in most cases I was actually in the treatment room for only approx 25-30 minutes.
The treatment lasts for six weeks, one session daily - Mondays to Fridays, with a break at the weekend to let the body (and mind) have a rest. I did not find the treatment too difficult to endure; I had only occasional spells of tiredness and a small area of hair loss at the back of my head in the area where the beams were most concentrated. Six weeks seemed to fly by. And, of course, my hair soon grew back.
The effects of the radiation treatment continued for several weeks after the end of the daily sessions, which did leave me feeling quite tired and for which I just took a short nap most afternoons. Otherwise I have had no noticeable side effects, and am now waiting for a review which will take place approx three months after the end of the radiotherapy treatment with a another review after six months. Each review will be preceded by an MRI scan, which will confirm, I hope, that the tumour has been “stabilised”, thus allowing me to get back to normal life once again.
So, for me, the sudden discovery of a brain tumour, although certainly eventful, has not been the end of the world that I initially feared. I am extremely grateful to Meningioma UK for all the advice and support that they were able to provide, and am more than willing to provide assistance in any way possible to help anybody through the difficult stages that I have been through myself. (please contact us to speak to Harry)
Finally, and by no means least, I am of course extremely grateful to my partner Carol, who has not only had to put up with all the above but has done so with much love and care. Without her it would certainly have been much, much harder. [end]
3 Jean: Comments on the
Importance of Good Communication
I was diagnosed with a meningioma tumour two years ago, and
had an operation to remove it in the summer of 2005. This operation was
successful in partially removing the tumour, and then I waited sixteen months
for radiotherapy treatment to arrest further growth.
One of the over-riding problems I experienced throughout
this daunting, and often frightening, experience was a lack of information
relating to my condition. Since discovering Meningioma UK,
and reading their simple, but oh-so-informative handout on my particular type
of tumour, I realise how much information like this would have meant to me at
the start of my brain tumour journey.
We all know how hard it is to understand, absorb, and retain,
verbal information at the time of diagnosis with a serious medical condition.
The questions we need to ask are not forthcoming in the initial state of shocked and disbelieving reaction to the
news.
Surely there ought to be some system available by which
patients could access general information about their condition – how helpful
that would be!
Also, one’s own particular situation needs some kind of
setting where, what may seem to our doctors as simple or even trivial
questions, could be answered. Of course, I am aware of time constraints and the
pressure of patient numbers, but, nonetheless, it should be within the bounds
of possibility to offer or arrange something
more than a general health helpline for patients newly diagnosed with a serious
medical condition – not that I was offered even that!
To give you just one example: on the lead-up to signing the
consent form for the radiotherapy, it would have been good to know that the
type of rt I was about to receive was not available across the country. And
some explanatory information about how it worked, how it targeted the tumour
and so on would have been reassuring too. Don’t get me wrong, I am not
suggesting we should be at the receiving end of a high-tech medical lecture,
but a simple, clear explanation such as Meningioma UK later gave me would have
been very welcome at the time.
I hope this doesn’t sound like a rant. I am extremely
grateful for the medical treatment I have received. I deeply appreciate and
recognise the skill and care of my neurosurgeon and his team. But I want to
underline my view that communication is vitally important in all our human
interactions, and never more so than when we find ourselves confronted by a brain tumour diagnosis. [end]
4 Claire Driver has lived with a brain tumour for nearly 20 years.
Here is her inspiring story
In the summer of 1988, 20 weeks pregnant with my first child and at work at the time, my very first symptoms reared their ugly head: without any warning, I opened my mouth to talk and all that came out was unintelligible nonsense. Overnight my brain had stopped me from constructing words. It merely allowed me to release a series of noises, with no on-off button; my mouth would literally run away with itself, and I was powerless to stop it. My right hand was also flinching, moving spasmodically when it felt like it.
Naturally, frightened and worried, I went straight to my parents but then had my second “episode”. They immediately called out our GP who, on arrival, asked me whether I was in a religious cult! As I was under a lot of stress at that time, he suggested I took a drug called Propanalol to slow down my heart rate. While reluctant, I soon came to the conclusion that I would try almost anything to sort out the problem. These episodes, more commonly known to my family and me as “dos”, continued every so often and then just would fade away. I suffered anxiety attacks and thought I was on the verge of a nervous breakdown.
After my daughter was born, I began motherhood with both excitement and extreme worry. My “dos” seemed to become less frequent until 1990, when the gibberish talking returned. I learned to control this by keeping my mouth shut when I felt it coming on. My new GP simply dismissed my symptoms as stress until, on a subsequent visit, I had one of my “do's” right in front of her. I was referred to a neurologist who arranged an ECG, lots of little electrodes stuck on to my scalp, wired up to a monitor to report on how the brain is functioning. The neurologist diagnosed epilepsy, prescribing Tegretol, but as I was nearing my due date I had to wait until after my second child was born. By this time I was suffering from feelings of spacy-ness, although I never blacked out.
A year later my parents intervened and took me to a neurologist in Harley Street. He sent me immediately for a scan at the Royal Free Hospital in Hampstead, and there it was in black and white. I had a brain tumour. It was a glioma, a slow-growing tumour. My first brain operation took place in 1995, followed by six weeks of radiotherapy.
After that I lived a normal life until 2004, when I noticed my right leg dragging slightly, and other symptoms. I deteriorated very quickly, almost overnight. I had a scan on 18 October and by 4 November I was having surgery, once again thankfully successfully. However, my tumour had changed its spots to become a glioblastoma, a more serious, cancerous tumour and more unpredictable. Following surgery I was put on PCV (three different drugs: Procarbazine, Carmustine and Vincristine); six-weekly cycles of two different tablets for 10 days and a drug intravenously for 15 minutes on day one. I had six cycles of this very harsh chemo so was vomiting almost daily during the first 10 days of the cycle and lost weight. I am now on Temozolomide.
It has taken a while to get my anti-sickness tablets right and apart from feeling very tired at times when I have to be strict with myself, forget the housework and the children’s dinner, I cope. I don’t think any on-going treatment is ideal, it is poison after all. But the good news is my three-monthly scans are showing that the tumour is shrinking.
All in all, I’ve been very lucky. My children are teenagers now, and becoming more independent; so I can start having more ‘me’ time with reflexology, acupuncture and aromatherapy massage, along with my daily walking, which I love.
I have been living with a brain tumour for nearly 20 years and I live virtually the same life as I would be living if I did not have cancer and for that I am grateful.
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