Sunday, 25 August 2013

Foramen Magnum Meningioma or Bert for short.

Of course Bert isn't an official medical name for a brain tumour. I decided within days of being told that I now had an uncertain future, that I would give my tumour a name seeings it looks like Bert is going to be with me for the rest of my life. I have heard of other names brain tumour sufferers have given theirs names as well. Minger is a very popular choice.

My tumour had to go and be a rare one didn't it. Roughly about 2% of meningiomas are found on the brain stem. I have put shouts out over brain tumour forums to find someone with a similar tumour, but as yet I haven't found a single person in the world with one where mine is. So it's a wee bit lonely.

Depending on exactly where in the brain stem a tumour is (and how big it is), surgery may not be possible without destroying a vital area of the brain stem, which would in itself cause death. I have an ever rarer extra complication of my tumour. It has grow large and engulfed the veterbral artery. I have been told that's what makes mine pretty inoperable full stop. It's usually not possible to cure brain stem tumours. Of course the brain stem controls all your vital bodily functions this includes

- breathing 

- heart rate

- swallowing

We have found mine in hopefully the early stages of symptoms. Meningioma benign tumours are normally slow growing and I could have had mine for as long as 20 years. Over this time it has grown and distorted my spinal cord. I have had a long history of migraines which I took, medication for, for years which never really helped. This might have been when the tumour was active and putting pressure on my spinal cord, causing pressure in my brain. I have had a stiff neck, with pain all along the bottom of my skull for years. I fell out of a window when I was young child and I had to wear a surgical collar. So I've always put this discomfort down to that. In 2011 I had to have major surgery on my lumbar spine, and I am still recovering from that. The pain in my neck was, a minor inconvenience compared to what I was experiencing. It was only when I began to suffer severe cervical pain and not be able to flex my neck, whilst I was on holiday, that I sort an appointment with a neurosurgeon to see what was causing my symptoms.

So where am I at now. Well I am slowly getting over the shock. In some ways it was good that my neurosurgeon has been on holiday since he gave me my diagnosis. I have had two weeks, to find out what questions I should be asking. I have been able to do research on the sort of treatment options that I may be able to get with the right neurosurgeon. 

As the tumour progresses my symptoms will become more debilitating. They will start with losing feeling in my arms, which then progresses to my legs. My facial nerves will become affected, along with my swallowing.  It ends with being a quadriplegic, being unable to breathe unaided. So not a perfect ending. Probably, why my neurosurgeon told me it would have been better for me to have never known I have Bert. He's told me to go and live my life and hope I die from some other cause.

Of course we don't know how my tumour is going to act in the coming future or how long I have with minor symptoms. I am now going to have my tumour watched for growth over the next six months and for the rest of my life.

The Brainstrust have been very helpful, in keeping my spirits up with lovely emails. They have sent me a box full of books and information I need, to make choices for my care. They also believe I am right to seek a second opinion. As my tumour is very rare as it's on the brain stem instead of in the brain, some of the best brain surgeons in the UK won't be of much help to me. 

The neurosurgeon I originally saw is one of the best in my tumours area. But I am hoping to see a specialist in brain tumours in the skull base, who operates in the same hospital I had my spine surgery in. They have a specialist brain centre with all the best brain surgeons and equipment in the UK. He also treats tumours with a specialised radiation called Gamma Knife that may be my only hope to try and hold of the symptoms. The Gamma knife might be able to be used to shrink my tumour for a while. The Gamma knife comes with lots of other medical issues that I would have to deal with. It doesn't cure symptoms already being experienced and can in fact make them worse as the tumour often swells after treatment and it takes months before the treatment has any effect. But this may be my only hope, if the tumour is small enough.

I am sure I will cope with whatever is thrown at me. As my physio and rehab Pilates teacher said to me this week. I dealt with my spine challenge, and never gave up until I got the surgery to bring me back a quality of life I was missing. He said you can do it again.

See me smiling in this photo in Monument Valley. I was in chronic pain in my head and neck and at my lowest point. I was in fact finding it hard to cope with the pain. But within 24 hours I had it under control. I can do it again

Thursday, 22 August 2013

Being diagnosed with a brain tumour

When you go to see a consultant due to neck pain and come out with an inoperable brain tumour it can understandably be a shock to the system. And I really do mean system. 

I am a great coper with medical things. I love hospitals and think I really did miss my vocation by not becoming a nurse. So hospitals don't scare me in the least. I'm also not scared by people with serious illness. For 5 years I was a carer in the community, and I loved every minute of it. I had a bubbly personality, that lifted people's short time that they got to spend with me. It was brilliant to make a little difference in people's everyday.

So although I am a great coper with bad news and illness. My body did go into shock. When we left the hospital on a sunny, Tuesday evening, we had planned to treat ourselves to a Thai meal on the way home. Understandably our appetites had disappeared. As we drove along trying to decide what to do, my hands were involuntary shaking and I mean shaking. The only other times I've had that happen was when I gave birth to both my children. I was fine and had had easy births. But my body was in shock. 

As the week has continued on. I myself have been coping very well. I am extremely practical and have spent a part of each day doing some research into my condition. Taking it slow, as I feel there is no rush. But my body keeps getting in the way. It's not letting me sleep well. I'm a bad sleeper at the best of time. I was taught methods of dealing with worries, when I worked with abused children. It a technique where you imagine putting your worries in a box and putting it somewhere metaphysically . I am a bit of a pro at this technique having used it for years. It has always been a great help. But the first nights after my diagnosis, the worries were racing in and out of my head. There were so many it was hard to catch them to put them into a box. The only way I ended up managing it was to imagine I had a fishing net and make huge sweeping motions catching all the thoughts. I then proceeded to imagine I had put them in a cute patterned trunk, I keep shoes in in the conservatory. It seemed to do the trick, but then I became more aware of my other body tricks telling me it was scared.

When I am anxious I always want to go to the toilet. I have what is medically called an unstable bladder. So no camel piss for me, ever ! It's always more like a dormouse's piss. Such a trickle, its embarrassing when people are waiting for me at the toilets. I am in and out quicker than my husband can clear a room after a fart. Since my diagnosis, you would think I have cystitis without the acute pain. I have had a constant low aching pain in my bladder, which makes it hard to concentrate on going to sleep. My brain Is telling me to go for a piss, and I am telling it to piss off, it's fine. I know it is just a fight or flight reaction. So now my bladder is on high alert sympathy for its mate the brain. If it keeps on I can see the pair of them falling out. It is really getting on my brains nerves.

Then we have my stomach. That too has decided it needs to express its sympathy in the only way it knows. Pain, just to let everyone know its there. I have had very little appetite in the last week. It's hard to decide what to have to eat, when you have no appetite. I have been choosing some of my old favourites to tempt myself. But it has been hard going. I have the worst indigestion and deep stomach pain. Obviously due to too much stress hormone and adrenaline. To add to my stomach woes, I have been having to take ibuprofen for back pain and bruising from a relaxing massage, that turned into a deep tissue bruising agony affair. But that's another story. My stomach doesn't like ibuprofen much and always rebels against it. So not not only do I have no appetite, but I feel like my stomach is on fire. I suppose it could be seen as a blessing if I tried to look on the bright side. At least it takes my attention away from the fact that I have a brain tumour ! 

I know the day will come when all these distressing symptoms my body is causing itself will calm down and I am dearly looking forward to the day. It should be just around the corner. But then I have moments of realising that this will become a lifetimes occurrence. For the rest of my life I am going to be scanned and spend hours waiting at hospitals for news. My life has really and truly changed forever.

Tuesday, 20 August 2013

The big polo mint - MRI scanner

It's funny what goes through your head when your stuck for hours on end in a tube with your head clamped down.
My immediate pondering are how much bloody longer. I wasn't even expecting an MRI on the day I went for my initial private consultation . I had chosen my consultant from a newspaper article about the top 10 spine surgeons in the UK.
That was how I had found the amazing Mr Lester Wilson for my previous spine surgery. This time I was looking for a neck specialist. I found one who was in the next County over, so a bit of a trek but nothing that wasn't doable. He gave me some weird tests, which I had to be undressed for. Lucky I had put on sexy black underwear just in case we had to get to know each other intimately. 
It turns out he was thinking, not how sexy I looked in my big knickers, but what was this women doing here wasting his time with no symptoms but a stiff neck. My acute pain from my trip to Colorado had disappeared as quickly as it had came by this time. But he went through the motions, hell I was paying him a lot, for him to tell me I was just getting old. He said he was off on holiday the next day ( he's always on holiday ! I'm now waiting again for him to return from a fortnights holiday ) that I should book an MRI and come back for the results.

The MRI people said they had an opening I could have in an hours time, was I prepared to sit and wait? By this point I was starving. I hadn't had any lunch. So I had noticed all the other normal people helping themselves to hot drinks from a machine. I only drink tea at gun point or if I have a scone with clotted cream in front of me. I checked out the vending machine next to it. It was full of posh looking sandwiches. Not only do I not drink hot drinks, I don't eat sandwiches either. Yep, I'm a fussy fart nightmare. But there in the machine were some biscuits. I stood for what seemed like hours choosing which ones would fill me up the most for 30p. Yep, I'm tight as well as fussy. Then you needed a Masters Degree to work the bloody thing. I pretended to those around me that I knew what I was doing. I can't describe my excitement when it turned out you got two packets of biscuits. Bourbons and custard creams ! I found it funny that everything on offer was so much cheaper than you would get in a NHS hospital vending machine. It that age old thing, of when your rich, you just can't spend your money !

I settled down for the hour wait, dunking my biscuits slowly. I know I was in a private hospital where I'm supposed to be posh, but I didn't care I was starving Marvin. I flicked through some posh peoples magazines, choosing which multi million house I would buy with my imaginary £10 million. The time pretty much flew. 

Of I then popped for my MRI. I've had some before, so I knew about the road works noise around your head. The tube never ceases to amaze me, how confined it is. It always starts me thinking how they would fit a fat person in it. Not only can't you be fat, you can't have an MRI with piercings or a recent tattoo. That in my opinion, must rule out about 50% of the population.
The nurse said I didn't have to strip off into one of those arse baring gowns. I just needed to take off my jewellery. You can't go in the MRI room with anything metal. I suddenly thought about the metal under wiring in my gigantic boulder holder. She went and checked if I had to remove it, which I did. I don't want to imagine the consequences of my uplifted tits, being in a massive magnet. So I sat waiting, with my tits around my belly. 

The man before me came out of the MRI. I was laughing with him about what I'd heard the radiologist saying to him during his scan. It turned out he had fallen asleep. Only a bloody man, could do that whilst the sound of roadworks are going on around your head. Really I was chatting to him, to distract him from my pendulous breasts.

In I went. Little did I know I was going to be in it for hours ! I settled down and was thinking about the fillet steak I was cooking for tea. When it was finished, I was told how lucky I was that a consultant radiologist who happened to be making a visit to the scanner, thought it a good idea I be given a contrast brain scan. She was trying to make excuses to why this was a normal everyday occurrence. The fact that I had banged my head, and that the brain and neck are connected. Hang on , I never banged my head ! So I smelled a rat, but to make her feel better I never let on. So they kept me in the tube, but added a cannula for good measure this time. I was to sign my consent when I wasn't so incapacitated.

It's lucky I don't mind hospitals and don't freak out. The nurse said this time I wasn't even allowed to flinch. I had to be perfectly still at all times, even when she was injecting the contrast dye in. I've since found out the dye can make some people ill, so I was very lucky. To ensure no movement she added an American footballers mask. My head and face was now clamped down and she recommended I keep my eyes shut at all times. In the scanner tube I went again. It's very hard to breathe and be motionless. The more I tried not to breathe heavy the more I did. This scan was different from the off. Each scan was much longer, some of them as long as 6 minutes. My thoughts were turning to the fact there was no way when I had the head and neck pain I could have laid down for this long. Especially in the position I was in. I have been avoiding that position as it was prone to give me migraines. Even with my previous spine problem, I couldn't have laid on my back for that amount of time.

I then realised this wasn't normal and that they must have spotted something out of the ordinary. I have to get prior permission for everything from my insurance company and this obviously wasn't cheap. Someone had made the decision it was imperative without asking my consultant or BUPA.

I took to thinking about what I would do if I was told I didn't have long to live. My first thought was a pyramid of profiteroles from Tescos. I decided I would eat with abandonment anything I desired, and whenever I desired it. And they came first to mind.  I decided there was nothing I wanted to buy, I already had every material thing I'd ever wanted. I had a lovely big house, so that box was ticked. Travel came next to mind. Apart from my trip to Asia later in the year, I didn't have too many more bucket list places left to go. ( at this point I didn't think about the consequences of what I had, on my holiday insurance. At present it looks like I will never be able to return to the States, which makes me sad ) I was happy to think about my family being without me. My children have grow in to lovely adults and have great loving partners to fall upon. They are adults going out into the world, who don't need me so much. I have done my work. 

Meanwhile I am still in the tube and the tea and caffeine has gone through me. I am getting more and more desperate to wee. It was getting to a point I was going to have to say something, after each time I was being told the next scan of my brain was going to last six minutes. They were never ending.
At one point I thought it was the end, but it was only the half way point and I was being injected with contrast dye. It finally came to an end and they were trying to be kind to me, to not unduly worry me. I rushed to the loo and could relax. At last it was over and I could go home. But oh no, I then found out I had to sit there for 20 minutes in case I had a reaction. 
Bless the nurse, she sat chatting to me the entire time. I was telling her I wanted to get home to cook some fillet steak. My son was home for a visit, from a year in Dubai. He was going out and needed to eat before a certain time. I had spent a lot on the steak, as it was a special meal. I had a delicious dinner planned, made up of all our favourite accompaniments. There was no way that fillet steak wasn't being eaten. It'd ad cost me a small mortgage !

I finally left the hospital 5 hours after entering it !!!! 5 hours ........... It was a different day outside. I'd gone in when it was grey and raining and came out to tropical weather.

It looks like MRIs and me are going to be in each others lives forever now. Next time I'll have that pyramid of profiteroles waiting for me when I get home.

PS I sneaked my camera out for a photo whilst I was waiting.

Monday, 19 August 2013

Other things on my mind.

Hi, long time no chat. 

I have a major excuse why I haven't be blogging. I have a brain tumour !!!
 Yep, you read that right. 
It was a shock to me as well.
 But really I am just using it as an excuse to you for my non blog writing. Hell, I was only diagnosed with it last Tuesday, so that's a crap excuse. But I've been finding having a brain tumour is great for getting out of things or blaming things on. My daughter said it's been great at work for people easing the pressure of her and giving her sympathetic looks and hugs. Hell, I wish I had known last month when Bristish Airways decided it was a good idea to move me out of my pre paid for window seat, into the crap seat in the middle. I was REALLY pissed off, when the "child" (16yrs +) was given my seat. Even more so when I saw her bloody put down the blind as soon as we were in the air. Why did she need my window seat ? Now if only I had known about "Bert " at the time. My pleading for a window seat, which fell on deaf ears might have had more oomph behind it.
I would have said I NEEDED the seat to stop my anxiety of flying. I might even have said, that it would be on her head, if as a result I had a serious seizure mid-air. Maybe an exaggeration by me, I've never even had a seizure, but she wouldn't have known that. Ha Ha. Who knows she might have found me a comfy seat in First Class.
See, "Bert" might come in handy.

Bert is the name I decided to give my tumour. I instantly thought of Gilbert the grape. God knows why as my tumour is the size of a gobstopper. Hubby asked the consultant that question. " Small then " said hubby. Obviously Hubby never had the gobstoppers I  bought in my youth. I think it was all just a ruse by the consultant to stop me knowing the truth. He said he didn't know how to use the measuring device on the MRI pictures. This from a doctor who is named as one of the top 10 back neurologists in the UK. Mmmmm doesn't ring true to me.

Shortening it to Bert, sounded short and sweet. So it looks like I will be taking my stowaway with me, everywhere now. Can't say it feels the same as being pregnant, and having another being with you all the time. Bert might even cause me some problems. The DVLA need to know that I won't be the only one driving a car from now on. He didn't even take a driving test, so he could be a devil on the road. Hopefully he is just a back seat driver.

Oh and how clever is the title of this blog post. I knicked it from another brain tumour blogger.


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