My Story!

I’ve created this blog site so that I can document my journey, my personal experiences, my thoughts and feelings with living and surviving a Spinal Cord Tumour and sharing it with anyone who may be in the same situation. I know it’s a little long, but I’m hoping to capture my story as openly as possible. It’s difficult to write about a lifetime of challenges and still be able to show some courage or determination and personality in a few pages. Firstly to be honest, I can say that there have been some strides and hurdles along the way.

I was born in 1965 and am the youngest daughter of three. My parents immigrated to Australia from Italy in 1963.  All was well until April 1970 when at age four and a half and after numerous tests, I was diagnosed with a Spinal Cord Tumour (SCT, Astrocytoma) at C-1 to T-6. Almost immediately I had an extensive Cervical Laminectomy to have it removed. I was fortunate I only had some neurological loss and was able to make an almost full recovery, only dealing with weakness down my left side and Kyphoscoliosis. Luckily I wasn’t confined to a wheelchair or worse.

During my hospital stay the physiotherapist would  smack & hit me if I didn’t comply with her instructions and exercises. I was having problems with straightening out my weaker left leg and needed to bear weight on it. She would smack me on that leg to get me to place my foot on the floor. Of course I’d become what they call “a difficult child” and my leg would stiffen up even more. Back then parents didn’t stay with you at the hospital like they do now and I was too scared to say anything. The hospital rooms had large glass windows and when I’d see the PT pass by the corridor from my bed. I used to hide under the covers, and then later as I got stronger, I would hide under the bed. She would pull me out from under the bed while I was holding onto the foot of the bed. One day a grandmother caught out the PT in action, hitting her grandchild and me. She was an elderly person and had just lost her daughter and son in-law in a car accident and was now taking care of her only granddaughter who had survived the accident. She told my mum what was happening to me and her granddaughter and begged my mum for help. So my mum decided to hide behind the door to see if she could catch her in action. Well of course she caught her. My poor mum was ropeable with anger. My mum said she screamed at her and  nurses from the other room had to come and pull her off. Apparently she was mistreating all the kids in that ward not just us. Not sure what happened to her but we never saw her again. It took me a long time to trust any adults after that and I hated all doctors, they never spoke to you but about you to your parents. How times have changed, doctors today are so much more caring and they speak to their young patients. My mum helped me to walk by getting a pram with a doll and I would walk behind it, getting me to relax the leg. The doctors were happy with my walking and I eventually left the hospital.

I had a good run until about 1982 when I was 16 years old and in Year 10. I experienced a pretty stressful time contemplating what I should do with my life. In the middle of that year I discovered a large lump on the right side of my neck. I really didn’t know how long it had been there but it was eventually diagnosed as an enlarged thyroid gland. Having had a large amount of radiation previously to stop the tumour, the doctors were a little concerned about the growth. Not that I really understood what was happening at the time, but to cut a long story short, it was removed and was cancer free. The funny thing was it was still functioning correctly despite the fact it was burnt to a crisp, like us Aussies like to do to a steak on ‘a barbie’.

At the end of that same year, my final year of school, I began noticing problems with my right leg. Numbness in particular. At the time I put it down to being stressed about school and getting over my thyroid surgery. However a CT-scan and another myelogram later (no MRI’s back then) showed that a large amount of the tumour was still present. It had expanded my spinal cord four times its natural width, which explained the Kyphoscoliosis. I was told any attempt to remove the tumour at that stage would definably have devastating consequences, even a chance of being left a quadriplegic. So it was thought to leave it alone and just monitor it as I was still experiencing good neurological function and why tempt fate? I had already put it through its paces!

After this I had another good run. But I remember early in 1988, out of the blue, while shopping, walking down the street suddenly I could no longer keep up with my mum. No matter how hard I tried my legs weren’t moving as fast as before. I put it down to tiredness and didn’t really pay much attention or realised what was happening. Things weren’t quite the same anymore, although I really didn’t notice it at the time or I just learnt to live with it. In hindsight it was a major downward turn, although it didn’t stop me doing the things I was doing before, only they became more difficult. Soon after I discovered my left thyroid was swollen. At first my doctors weren’t too bothered about it, removing the only gland I had left would mean I would need to be put on medication, which they wanted to avoid. But after a while it was getting larger, so in late 1988 they cut that one out too. Unfortunately I wasn’t so lucky on this occasion. They found some early cancer cells, caused by the long-term effects of the radiation therapy. Luckily it was caught before it jumped ‘the fence’ and spread. Consequently though, just in case some cells had decided to escape and ‘jump’, I had more radiation to get them before they got me, which I thought was a little ironic.

The next year I went away with my parents to Italy for six months to visit all my relos (relatives). We also stayed in Switzerland for 2 weeks, which was beautiful. I hadn’t been to Italy since I was 6 years old. I wasn’t moving as well as I used to and I was having problems and pain in my left ankle if I walked on it for too long. I just put it down to the loss of my thyroid and the effects of the radiation.

When I got back from overseas – at the grand age of 24 – I felt a bit strange, kind of lost but couldn’t put it down to anything. I just thought I was getting lazy. I had continued going to painting classes and I decided I needed to make some changes, get out more, get more exercise and be more active. I decided that I needed to get my driver’s license but wasn’t even sure whether I could or not, if I had enough abilities and strength to handle a moving car. I thought before I said anything to anyone I’d try it out first. I had my best friend take me to a driving school for the disabled where I had a driving lesson. I wouldn’t say I was great on my first lesson. I only had the one hand to steer with and I had no idea how a car worked. From that one lesson I knew that this was something I could do, with a lot of practice. The difficult part now was breaking the news to my parents and convincing them this was something I could do. I didn’t really need their approval which I didn’t get at first, but I needed their support. So my plan was to get someone who they totally trusted to help me convince them, and who better than our local doctor whom we’d known for years. I asked my parents if our doctor said it was ok, would it be ok with them, to which they agreed. At first I was a little worried because I really hadn’t spoken to him about it before hand, so I really didn’t know if he was going to agree. To my delight and my parent’s disbelief he thought it was a great idea and was very positive about it. So in the end with a lot of hard work I did get my driving license, although I knew that I would have to give it up at some stage in the future.

Now that I had my license I had more independence than I’d ever had before., I was now going to painting classes two times a week and taking my nieces out shopping, to the movies, swimming lessons or picking them up after their part-time jobs. So I was a lot more active. I was however getting stiffness in my legs, so I looked for someone who did light massage. This helped somewhat and it worked out great because the masseur needed someone to help him out with promotion and advertising. So I volunteered my creative skills to help him and he in turn helped me out. It was a good stepping stone because later on I found paid work for my creative computer skills and this work slowly replaced my painting classes. I was only working two days a week but at least I was getting paid. I still was volunteering my time and getting free massages. So despite some small hiccups this was my most productive time. My family agreed that getting my license was the best thing I ever did. I’m so glad I stuck to my guns, otherwise I’m not sure that things would have turned out as they did. Who says stubbornness and determination doesn’t pay off sometimes? I stopped having massages, as it wasn’t helping as much as it did before, I still on occasion did some work for him but not as much. I was still working and enjoyed being around a young group of people.

As the years passed I was really slowing down, struggling with my walking more than ever before. I needed support while I was walking and going up and down the stairs took forever. The tightness and stiffness had become worse, so I picked up a friend, (not that kind of friend!) When I say a friend, I mean a trusty old walking stick, this is my attempt at some humour, probably not very good, I’m sorry. At this time I found myself needing to lean on walls and furniture. I had a good system set up at home. Coming down the stairs, I would lean from the door to the back of the lounge, to the table, then to the kitchen bench – looking back – it was a joke! I bit like that song, “the knee bone connected to the shin bone, the shin bone connected to the knee bone” and so forth. I had another system for the upstairs too, but I’m lost at my sister’s, who has this huge house, no system works there. Tired of this, I bit the bullet and went to the doctor who then referred me to a neurosurgeon (which I will refer to as NS from here on) who then sent me for an MRI, you know the drill. It was my first MRI, it was good for myself to actually see on film what this tumour looked like. It was fairly big, the NS couldn’t tell where it actually started and finished. That was just the start of it as the MRI also showed that a Cyst (Syringomyelia) had formed which we didn’t know about. The cyst is above the tumour and actually in the brain stem, the worst place possible, and it’s like having another tumour all over again as it has the same effect.

So it all came as quite a shock as I really didn’t understand the consequences of what it all meant. In the beginning they thought they would just drain the cyst, put in a shunt and clean up as much of the radiotherapy muck as they could. I had a whole team of doctors, neurologists, orthopaedics and radiologists all looking at my scans, but the more they thought about it, the more they thought not to do anything. They weren’t sure whether the cyst was the cause of my recent deterioration or whether it was a combination of all these things. The cause could be the remaining tumour, the cystic changers within the spinal cord itself, the effects of long-term radiotherapy, wear and tear, thinning and tattering of the spinal cord. In some places the cord is so very thin and stretched they don’t know how I have as much function as I do. My decline could be caused by a combination of all these things listed above. So basically, dealing with the cyst alone might not solve my dilemma, if it did it would only be a short-term thing. (I don’t do things by half, I have to go all the way, if you have to do it, do it well, I always say.) Going in at this stage while I still had good function was pretty risky (although I beg to differ). The operation itself could cause the very thing I am trying to avoid, quadriplegia. If I do nothing I’m still heading in that direction – a catch 22 situation, dammed if I do and dammed if I don’t. I am sure doctors would confirm that there’s always some damage done when operating on the spinal cord. So the consensus was to wait a year have another MRI and then take it from there.

In the mean time I was going to what they call here in Australia a Spinal Rehabilitation Clinic. I had some physio, home exercises, even botox, which really did help but it interfered with my thyroid medication. All these things helped for a while. At this time I was going into work less and less but I was doing some work from home. Eventually I stopped going to work – which was difficult to accept – and unfortunately because of this I also stopped driving. I did however continue to work from home for a few more years, and this kept me going for a while until about the end of 2004.

In 2005 I had my next MRI. Nothing had really changed much, even though I had declined somewhat. Things just steadily kept sneaking up on me and I suppose, I just learned to adapt to the minor changes. I also found I was in a bit more pain than I’d ever been before. I had to cut down the hours spent on the computer and rest in between. I had to plan my outings around my good days as I couldn’t sit up for more than a few hours at a time as I would just become too sore. Sometimes it would work out, other times I would have to leave early. I just hope that I didn’t upset anyone, sometimes I think they don’t really understand, in some cases it’s just easier that I don’t go at all. It’s a bit like that now, the effort and stress it takes to go out only to return a few hours later, if that, isn’t worth it. I end up paying for it the next day and most of the time I don’t enjoy the outing anyway.

In February 2007 I went for another MRI and found out that there was nothing too drastic according to my NS. The cyst has grown only about half a centimetre since the first MRI was taken. Not very much according to my NS, he was actually impressed I was able to walk into his office. Well I say walking because I was standing with help, but you couldn’t really call it that. But for the want of a better word or description, we’ll just say it’s walking just for the sake of it. He did mention he was glad he hadn’t operated to drain the cyst when they first found it as I may have not had the same quality of life if they’d operated. That didn’t sound very encouraging, but I understood what he was saying, although it didn’t make me feel any better. I felt like I was going downhill and I wanted to slam on the brakes before I hit the bottom but “the breaks ain’t working man!” and the decline is getting steeper and there doesn’t seem to be any hills in sight, not even a little one. And even if they could build a little hill, with no brakes I could still veer off track and end up in a heap. So despite my slow descent I’m told that for the time being I do not need to have any more MRI’s unless something drastic happens in the meantime.

The end of 2007 and the beginning of 2008 was a bit of a bumpy ride. I was in a bit more pain and needing extra help to get around.  It was very much up and down and I felt like I was on a knife’s edge with nowhere to go. The notion of using a wheelchair was looming over my head – like a noose around my neck – ready and waiting. The concept of a chair itself isn’t the problem, in fact it could be of great benefit – independence and such in the short term. But it’s what it represents for the long term, I felt like it would mean that I would be heading down a path of no return. I thought things had been difficult in the past but I know the consequences of relying on a chair will bring on other more complicated health issues.

In 2008…..struggling to just keep using my walking stick, I resided to using my scooter indoors. It was ok for a while but I know this was a short term measure.  Living in Australia, the government helps out with disability equipment, such as wheelchairs, hoists and even home modifications. In my case I was given a power-chair according to my needs. In order to do this I was assigned an OT (Occupational Therapist) who puts in a report with her recommendation of my physical needs. Then the government suggested that I trial different types of wheelchairs over a few weeks, to see which type and features are right for me. I also had a team of specialized people to work out my seating, to make sure I wasn’t in danger of any skin break outs and the sort. This all took quite a few months coming and going to the seating clinic. Getting this part right was difficult because of my spinal shape and not sitting up straight like most people. Once the OT was happy together with the seating clinic, they put in a claim. Once the government accepts and agrees with their recommendation, I was put on a waiting list. I was told this could take up to a year or more, it also depended on how urgent it was. . .

In 2009…….I was managing with the scooter indoors and it was a fold up type so I could put it in the car and use it for shopping and going out. It got really tiring and uncomfortable at times with the scooter, so I mixed it up a bit. In the middle of the day I’d have a 2 hour break and stretch out on my bed and if I was lucky I’d catch 40 winks. I was in a bit of pain more than I care to admit, and I hoped that when I got my power chair it would have improved. In July I finely made it to the top of the waiting list. Then it was just a matter of having everything adjusted and customised for me.  It was September before it arrived, and I nicknamed it, “the black beast”. It reclined, tilted and raised my legs, I pretty much got everything the OT asked for. Over the coming months it was a long trial and error getting my sitting position right. If we fixed my back rest I’d have problems with the cushion, fixed the cushion I had problems with the back rest. Anyway the pain was sometimes better sometimes not, the seating clinic came out for home visits to make adjustments, which was called The Out Reach Service. It was hard booking a disabled wheelchair access car to take me to the clinic, they were never available when the clinic was. Anyway I was able to transfer in and out of the chair myself. By the end of the day I was happy to get into bed, but by morning I was also glad to get out of bed. It seams I’m not really comfortable anywhere.  The only good thing about the chair was I could recline and stretch out when I wanted too.

In 2010……. I was still getting my seating right, it got better for a few months then I got sore, and I needed some more changes. I think what was happening was as I got a little worse I needed more adjusting. At that time I needed a bit of help with transfers in and out of my chair, the pain came and went.  I had resided to the fact that I was not going to ever be pain free again, pain relief helped but not totally. I used to have a painless and restful sleep, not so anymore in those days. It was getting difficult turning over in bed, putting a lot of strain on my muscles, and waking up sore and stiff. Sleep was the one thing I enjoyed, the only way I could get away from myself. I couldn’t even sleep in anymore. It was suggested that I get an electric bed, and more trials but I love my water bed too much. I was doing some researching online for slip-sheets, it helps you to turn over in bed easier. I trailed quite a few different types, some worked, some didn’t, some where too hot, and some would bunch up under you. I gave up but then I found this sheet called “a wonder sheet” it is like a normal sheet with a silk piece sown in the middle, and that helped.

In 2011…….That last year was a tough year, but I suppose I’m still here, not sure if it’s a good or bad thing. The seating clinic only came out a few times in 2011 I think for then it was the best we could hope for. I have been just barely bearing weight on my legs, but I’m grateful that I’ve managed to take care of my own personal needs up to now. Bearing weight is important to keep your bones from going soft and breaking. So once I’m not able to stand, I’ll be giving up one set of problems for another whole new set.  I went back to the spinal specialist for a check up, he was happy with me. He suggested I go back to see my NS for an MRI update, it’s has been quite a few years since I had one. I’ve been putting it off, and I’m not looking forward to hearing that the cyst has grown. I don’t think he’ll have anything new to add, other than the obvious. He did point out there might be new advances since I last saw my NS. So I probably get around to going in 2012.


2012.....Well again another tough year....its funny I say that every year and I suppose I'm beginning to realise that the slightest changers are now having a bigger impact on me than ever before. Those goal post's are moving every year now. I started the year off in a lot of pain and having it investigated as to the possible causes. MRI and other test's didn't really indelicate any growth of the cyst or Tumour which is good. My Doctors believe that the long term effect of the radiation therapy is playing a larger role now than the cyst and tumour. Also the change of life has muddied the waters, it has weakened my muscles. I am now no longer able to do transfers on my own, no longer able to take myself to the bathroom. I've finely crossed the line, the line I was trying to hold back and it will never be quite the same again. I am now needing to get outside services and equipment, it took almost the whole year to organise these services and equipment and having some dark days in the middle of it all. Like someone said "it's not the end of the world" yes she's right, and I agree. But to me it represents the beginning of another more difficult faze of my life I was hoping to put off or not face at all. I'm not looking forward to what's coming ahead. I'd be happy for it now to remain as is or just stop, I'm getting very tied of the struggle. I'm hoping that 2013 will be calmer in this regard and have some services in place.   

On a personal note, for those of you who have had similar challenges or even worse, know that the cosmic universe has bigger and better things planned for us. All of your suffering is not wasted in vain, I’m sure there’s a very good reason for it all. In my case I know it has made me a deeper, wiser and a better person. Use it to your advantage and let others use it too, be grateful for what you have and not what you haven’t got. Take a set of difficult circumstance and turn them into something positive, it’s your choice to work with what you have.

I wish you all “Love & Light” 

This story will be updated again shortly ….. To be continued…..