Annette’s story

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I live an active life in Hervey Bay, where I’m a member of social groups. I have adult children and grandchildren, and a wide circle of friends.

I love to write. And this I do on my iMac. I go to the 'L' plate meetings but I think I'll be going there for a long time. Fortunately the co-ordinator is a very nice, tolerant and helpful person. He began by telling us that you cannot do anything to a Mac. Press the keys and learn. That was until he met me!

Most importantly I love The Lord Jesus who has been my strength, bringing me through the good times, the not so good times, and the, 'I'm throwing in the towel' times.

I was first diagnosed with a brain tumour in 1997. Prior to knowing about my tumour I don't think I was concerned about anything. If I was I don't remember. I do, and have always liked people, but I’m not what I was, not what I am and not what I’ll end up being.

Epilepsy was one of the affects caused by the tumour compressing on the brain. This, too, has had an impact on my life; the different types of seizures each with different and often over-lapping behaviours all of which are rarely, if ever, amusing.

Humour is very important. If you can’t laugh at the things that happen, life would be a tale of woe. You’ve got to see the funny side. I’m very blessed. I know people who are so much worse off. I want to be an encouragement. 

My story

In July 1997 I had a tumour diagnosed, and it was quite advanced. I didn’t know there was a tumour, and neither did the family. My sons took me down to the local hospital, to the emergency room, and we were waiting there. I became tired and my sons got fed up and they went to ask how long a wait. The doctor said to take me home, and they refused and told him they had to find a bed because I was in so much pain. I had a couple more encounters with the same doctor. No matter how clever a doctor he was one thing he didn't have was a good, bed- side manner.

I was there for five days, being treated for a urinary tract infection, although my memories of this are scattered I purchased for a few dollars my medical records sometime later. After I came out of hospital, as is usual, I had to go to the doctor, and she sent me for an x-ray, and she sent me to the specialist, and then they finally confirmed the tumour, and it was very large, and they put me on medication. My late husband said to the kids ‘better take a photograph of your mother in case she dies’, so this photo was taken and some years later I found it. It was so ugly I tore it up!

So I went into hospital, Canberra hospital, and had the operation at the end of August. It was to be earlier but they deferred it because an emergency came in. They were going to defer it again, and by this time I was mute, and not really responsive to anything. By this time, my daughter Maria had come up from Melbourne, and my daughter Katrina and her husband had come from America with their 3 month old baby, my son and his wife arrived from Hobart. My youngest son lived locally. The family were angry about the delay which was to be a week and they all went to work, making all sort of threats to the specialist and the hospital staff that if they didn’t shift themselves, it would be on A Current Affair. One of them went to the local member, and he was going to act on my behalf. My late husband contacted my GP And the local newspaper, the Canberra Times, was going to be contacted too. So l had the operation – it was much easier to put me under the scalpel than battle the bureaucracy! I don’t know what happened, whether it was the registrar who did the operation, or assisted – I’ve always wondered. I don’t have the MRI’s, only one page, which gives one angle. As to the other scans, who knows. According to Dr C, on one page of his notes the tumour – a left frontal Meningioma, was very large, and on another page, it is large. But to me, what does it matter – it was there. Most importantly, I survived. The ten days I was in hospital are mostly forgotten. The few people I remember are like snapshots. No one ever moved, or so it seemed to me.

Since 1999, I’ve been wearing ear protectors outside of my home, because of intense sensitivity to noise. In the beginning, after the operation, I remember my son getting me a speaker phone, because I couldn’t listen on the earpiece any more. I got an EEG, using a cap on my head, and I was telling her about how uncomfortable it was for me, and she said it was injured nerve endings, and that was the only time I’ve ever had an answer. And the other thing is chill. We’re very fortunate here in Hervey Bay, having public transport that picks us up at the door and drops us off where we want to go within the local area – it’s an awesome bus! And they’re all quite used to me – I sit in the bus, rain, hail or shine, with a hat, a coat and scarf. In winter the cold, and in summer the chill of the air conditioning affects me very strongly. At the RSL club where I go for lunch, and to a writing group, they decided that you could not wear a hat, and so I was requested to remove my hat. So I gave them a letter from my doctor, now they ring upstairs and say ‘there’s a lady with a hat on her way up here’. And I spoke to the bus drivers – there’s only three – because I was also very weak, but I told them about the tumour, very briefly, while they were helping me with my groceries up to my door, and I said that I had a tumour removed, and that I had epilepsy, in case anything happened on the bus. I also mentioned the short term memory loss, but I think that had become quite apparent to them. No matter, there are lots of things best forgotten anyhow.

Five years ago, in 2006, the second tumour was removed. It was discovered by the same lovely doctor, my GP, who found the first one. I was getting dizzy, off balance. She ordered an MRI and lo and behold, another tumour. She sent me to the same neurosurgeon. Then I came up to Hervey Bay to live – I couldn’t tolerate the noise, I found the grandchildren too much for me, I couldn’t tolerate cigarette smoke. My husband was a heavy smoker. When I arrived I saw the local doctor – I wanted to see a neurosurgeon, and neurologist up here, but he looked at the scans and said ‘no big deal, it’s only small. It’ll be there for years’. I successfully insisted on a referral. I saw a lady specialist in Brisbane, and she was lovely, and she operated soon afterward.

I got a room on my own there too. When I was in the high dependency area, I was taken to another area by a senior nurse and a male nurse into a four bed ward. Two of the beds were taken up by men. I wouldn’t let the male nurse come into the bathroom with me – I wasn’t happy about a man coming into the bathroom with me! And I wasn't happy sharing a ward with two men one who snored so loudly I'm surprised the walls remained standing! The senior nurse decided the best thing to do was take me back to the High dependency ward and the next thing I was shaking and trembling. A doctor was called and they concluded it was a heart attack. And it wasn’t – for which I’m mighty grateful – an injured brain is enough. It was a tonic clonic seizure. I also had one with the first tumour, but I don’t remember that.

There’s lots of different little things going on in hospital, that would be quite frightening. They either go over your head, or they create an element of fear. And people think you’re ‘off the planet’, as the kids say, so you don’t know what’s going on. One good thing, though, was they gave me my own room then – I was so fortunate. But I was told if a private patient came in I would have to be moved. None did. After leaving the hospital I went to my daughter in Brisbane, and my other daughter arrived from NSW hired a car and drove me home to Hervey Bay.  

I have short term memory loss, and I get easily distracted, have trouble processing information, and balance issues – these are the things that cause me the most nuisance.

The end result of the tumour on the brain is a weakness on the right side, and the processing of new information. I did a radio program for two years. There’s no way I could learn to use the panels for doing the programme – my son in law and one of the elders from church did that, while I concentrated on what I do best – speaking. I was going to do a new program on Christian radio, but the format didn’t really appeal.

With the epilepsy, it seems to – at present, have increased seizure activity. I am having my medication adjusted. Life can be very difficult at times, and it has it’s own clock. One of the fearful aspects of it – and I don’t use that word lightly – I can have a great day, and on the way to bed, half way down the corridor- it always happened in the corridor- I would get a panic attack, and be in abject fear, get into bed, be unable to sleep, and get my walking stick (which I don’t need to use any more) and put it on the bed, get up and lock the bedroom door, get my medi-alarm fob around my neck and bedside lamp on – and be like that for most of the night, imagining all sorts of horrible things. I’m not brave, like the stars in the movies, I don’t go out and investigate, the only place I go is under the covers. And that’s part of the epilepsy that affects me. Fortunately this is rare. And another part of epilepsy it is déjà vu. It happened before with the first operation, in the hospital. But now, because everything seems to be governed by this déjà vu I don't find it frightening but it’s concerning, because you find yourself thinking ‘did that happen’ or ‘did I already do that’. And you drop things, and there’s lot of weird things.

But the fact of the matter is, no-one knows. This is the saddest part – people don’t know. They just think you’re stupid. Even your family, they get all these answers, the operation takes place, you get better, you get rid of the stick, the zimmer, all of those things, and they forget. They don’t understand why you’re not able to deal with grandchildren running around doing the things that grandchildren do – making a lot of noise. And my daughter gets a dog and the only way I could stop its continual barking was to take a packet of treats and feed it, and feed it, and feed it! Although I feel very sad, it’s a lot easier to be on your own, because you’ve got your own place, and you know exactly where you are, and what’s going on. Even when you’re among family and friends, they forget. I remember my daughter whispering to the kids ‘don’t make a noise, Granny’s here’, and I said to her ‘I can hear you!’ I’ve got very acute hearing. And I try to find a secluded space in church, where I can hear but not find it too loud. I feel sad for people in this situation. It's times like this when I think about people with hearing aids. They can be switched off.

People who don’t know, don’t understand. It doesn’t register with them. They’re people who don't don’t have training in that area. This is why carers are great, even though many get around quite well. It’s like a security blanket, because they understand the issues.

There needs to be an effort made by the Government for regional workshops to educate people about epilepsy. But money is the be all and end all to make these things happen – for epilepsy and brain injury organisations.

When I went for check ups, the neurologist used to say ‘lets have a look and see how this stroke is progressing’ – it wasn’t a stroke, it was a brain tumour! And I’d think ‘I’d never have you as my doctor if I had a choice’. I shouldn’t be negative about doctors, as they play a very important role, and none of us are perfect. But there are times when they don't have enough time.

With the first tumour, my family didn't know anything about tumours, they thought I’d gone senile. But after I’d recovered, they said it was so peaceful – I had become more malleable, and that was pleasing to my late husband.

With our Young at Heart group (50+ group), we have guest speakers, one was talking about dementia. I couldn’t help myself – I said to her I have ‘short term memory loss – brain tumour injury, short term memory loss – epilepsy. And forgetfulness that often happens with ageing. How is anyone going to know if I get dementia?’ She didn’t quite know what to say!

The bus drivers on the local bus service are great – I frequently ask, ‘where is such and such’ – the passengers help if the driver doesn’t know. That generates an interesting conversation. There’s lots of wonderful occurrences – you just have to look on the bright side. There is nothing like laughter to chase away the blues and brighten the day.

How have things changed for you?

I have become more tolerant of people and their shortcomings. And more tolerant of my own. I must say, though, if I wasn't me I wouldn't want to live with me. I have become more grateful for what I have, and of the goodness of people. Here in Hervey Bay you hear all this whinging about the young people, and that they’re such a pain. I haven’t found that – I’ve found them to be most considerate, most helpful. There’s only one or two, who aren’t. I have an awareness of the goodness and the kindness of people. And I have a desire to reciprocate, and do what you can for other people. There’s no point in me saying to someone who’s having a bad day, ‘me too’. You have to comfort them, and give strength back. If people do have a problem – if they’re upset, depressed, distressed, you can’t turn and tell them about the woe is me day you've had or having. There's no help or comfort in that. It makes them feel worse.

I’ve had a lot of loss in the past few years. One of my daughters died just over three years ago. My husband died eighteen months ago. My Mum died shortly before my daughter. And my dearest friend, who visited me every day for a long time after I arrived home from hospital died about a year after my husband.   She came to church with me. One of the family drove us. She died a few months after my husband.

Grief is a difficult time. Like feeling a bit sad that you didn’t say or do all the things you wanted to. It is better to smile and not wallow in sorrow. 

Not long after the first operation I bought new sheets, and put them straight onto the bed without washing, because I couldn’t wait to get fresh new sheets on the bed that I was spending so much time lying in. The next morning, I got up, and looking down at my feet, I saw they were green. I looked at my fingers – them too. Gangrene! I called a friend, who told me to get straight to the doctor. Before we left for the medical clinic, I asked my daughter to help me wash my face, hands and feet. We discovered they were green from dye from the sheets! 

It seems that I was cooking a 'boiler' chicken. As we know, boilers need a good few hours cooking. That I remembered. Next morning my husband wakens me and their he is standing with a pot in his hands. I asked him what he was cooking and he tells me he has rescued the now well cooked chicken which had been simmering away all night.

Another day, I was lying in bed – just outside the window is the public telephone box. I could hear this person shouting ‘you can hear me, you stupid so and so. Don’t think not answering is going to get you anywhere’ and there were a few colourful adjectives in there too. And then I remembered that Chris (husband) had gone to the shop next door and noticed that the public phone was broken. So the man didn’t even realise he was shouting into a broken phone!

I have another tumour growing at present. I expect it will take a couple of years and life goes on. There are lots of interesting things to do and I'm doing a few and planning to do more.

Life is good. I don't need an L.G. Ad to tell me that! I am constantly amazed at the people with disabilities who are out there doing activities that able people can but don't. No doubt they have reasons so I wish them well, but to all who do despite medical challenges, You Are the Best.

God's grace be with you,

Shalom,  

Annette