Profile: From August Newsletter 2013
Member of QANA “in hiding” and what it feels like coming out of hiding
My name is Milica (pronounced as Melissa). Until this year, I was one of QANA members who joined the Association seven years ago but was not coming to the meetings or conferences. I am not that shy and I am neither too old to come nor ignorant. On the contrary, I am only 60 and I think very highly of the Association and all of QANA members.
I appreciate very much the good work everyone is doing; you are so wonderful and warm people. Up to this year, I was content with just reading the QANA newsletter which I find interesting, informative and relevant. It has a nice balance of medical info, the Association news, personal experiences and other interesting readings (including jokes).
The Newsletter has been my selfish “one way” link to you which all changed after attending the meetings this year. I would like to share why I am now keen to interact more with the members and to turn it into a “two way” relationship.
It was really the survey, which had been sent earlier this year, that nudged me to think about my whole relationship with QANA and to conclude that it is time to get out of hiding. To be honest, I retired at the end of last year and have all this spare time at hand. Just joking – we have a beautiful nine months old granddaughter and two months old grandson so I have been traveling across Brisbane between three families almost every day but I certainly have more time and energy than when I worked full-time.
In the light of recent initiative to look for the ways of invigorating the Association, I would like to tell you how I heard about the Association and address the topic of why I have been a “member in hiding” (how I used to refer to myself) and what it feels like coming out of hiding.
My AN story in brief
I was diagnosed with 3 cm tumour on the right side in April 1997 and had an operation the next month. On a scan, a year after the operation, the report was showing that the tumour started to grow again. From then on, it was a “wait and see approach” till 2005 when its size required another operation. Since then, my yearly scans are clear but deep in me; I do not have a piece of mind that the tumour is gone for good. So, each time when MRI is due, my heart shrinks to a golf ball, positions itself at the bottom of my throat and I can hardly breathe until I hear the MRI result.
I re-read the paragraph above several times and could not believe how simple my AN experience sounds! I am sure that you could imagine what my real long AN story is like, but from reading other member’s stories, it seems that everyone’s story is different and it is interesting and useful to hear them. I promise that I am going to write my long story one day for the benefit of anyone who has to go through AN operation multiple times.
As for the side effects, I am totally deaf on one side and cannot tell where the sound is coming from (my husband still cannot get it that there is no point saying “I am here” and social gatherings, especially in restaurants, are a nightmare). The tinnitus is bad but when I am occupied, I do not pay attention and it does not bother me that much. I ended up with total facial palsy on the right side after both operations but the acupuncturist, who looks after my other aches and pains, worked wonders and managed to make the face move reasonably well after both operations. My balance is not too bad (I fell several times but broke bone only once). I cannot stand travelling in a car for more than 500 km per day and cannot do consecutive days in a car (our trip around Australia is crossed from the “to do list in retirement”).
Yes, I get tired easily, especially when trying to follow conversation in loud environment but I am alive! I am still around to see our sons getting married, our grand kids grow and my parents nearing 90 years of age.
My quick way to describe AN operation is: you get 10 years older in one hit and it takes you about three years to crawl back approximately close to where you should have been otherwise. It is an incredible experience and I agree with other members who highlighted in their stories that you learn a lot about yourself and others on the way and at least for my family members, I can say that everyone became a better, more caring person. One of my son (age 13 at the time of my first operation) learned and became really fond of cooking (my daughter in low is for ever grateful for that) and my husband and the other son embraced doing housework without grumbling which is very rare in people with South east European background.
Contact with AANA and QANA
When I was diagnosed with AN for the first time (sixteen years ago), my specialist did not mention anything about QANA. The diagnosis was done only 9 years since we moved to Australia from Serbia (part of former Yugoslavia). We just started to feel “at home” here, had a huge home loan and no family to help out. We were shocked, frighten with the unknown (internet was not that resourceful at that time) and we just blindly followed the specialist’s advice.
I wish so much that I knew about QANA back then but even more so in years before my second operation because it was actually harder second time. After five years of denial from the specialist that the tumour is growing again and conflicting information from radiologist whether the tumour is on the same or other side of my head (which would have left me totally deaf), I lost faith in medical professionals. However, that did not stop the inevitable and in October 2002, everyone (including me), accepted that the tumour was there again and luckily it was on the same side so I still have hearing on one side.
I was referred to a different specialist but the whole situation pushed me into a frantic mode to find more info and consider alternative options. I was truly desperate and could not imagine going through the same operation again. I am sure you can relate to that and understand how devastated I was.
I spent many hours researching for the information. You see, the internet is good in some aspects but it could become daunting and make you feel overloaded, difficult to filter what is relevant and useful. It certainly made me feel even more lonely and isolated because of information pouring onto me without any “human touch”. It is hard to describe what I mean, but for example, instead of reading endless info, it feels different if a live person says the same info with adding “you see”, “it is not that bad” etc. especially if a person saying it had been through the AN experience.
Anyway, one evening I stumbled over a contact phone number of ANAA (I do not remember whether they had a web page at that time or it was just an article). I checked the time, it was not too late in the evening and I jumped to the opportunity to talk to someone. It meant so much to me that I could actually speak to someone (non-medical professional) who knew what I was talking about. I cannot remember the name of a lady who answered (I am terrible with remembering names). I rushed to briefly, but very emotionally, explain my situation.
The lady calmed me down and in really nice and polite voice said that she had to stop me. Then, she asked from which state I was. When I answered: Queensland, she advised that I better ring the QANA, she gave me the phone number and …. and hang up – that was it.
I fell apart right there, erupted with tears and I felt as if my last chance to find someone to talk to was lost. I was too emotional and by the time I came to my senses, it was too late in the evening to ring the given number for QANA.
During days which followed, I was thinking of ringing the given number but I had not done it. I was not even given the name of a person, did not know who was actually behind that number and what the QANA does. At that time, I could not imagine being hanged up again.
If only I was more calm, collected and could think clearly; if I had more mental energy and determination, if the lady from ANAA took a few more minutes and said with a human voice the same words which I probably read on the internet (what ANAA and QANA associations do); if I rang the given QANA phone number; if….
I have no intention to blame the lady from ANAA. What she did was the most logical thing to do and was the best for me (to point me to the local association strait away, to spare me having to tell my story twice and to prevent starting a relationship with me and then having to shift me to someone else later).
From my point of view, I would not mind telling my story several times. I just needed to talk to a human being who can relate to me. However, with the support of family and understanding from management and colleagues at work, I survived the “wait and see period” and the second operation in September 2005.
It must have been my second or third day in the ward when a lady from QANA came to see me. I am embarrassed to say that I do not remember her name but I hope she will forgive me. I can tell you – she was wonderful. She told me everything about QANA, left the leaflets and form to join QANA. It was so comforting to know that there are other people who had AN, who meet and talk about it.
I wrote this to highlight how much I understand and value the support which QANA members provide to people at the time of their diagnosis, treatment and recovery, even if I have not received much support before the operations.
In my mind, if I would have to name one thing why the QANA should exist, it will be that support to the AN patients on their journey.
Why I became a member in hiding
Shortly after I left hospital, I sent the membership form and started receiving Newsletters. I was very excited about meeting the QANA members and helping others. Unfortunately, the first QANA meeting (October one) was at the time when I was not well enough to attend (could not keep myself in upright position for more than one hour). The next one was a picnic (I think) for the Christmas break which I could not attend because I could not stand trips in a car.
When I started to go out more I saw a friend who had AN operation in early nighties and I told her briefly what happened to me. She became so worried that her tumour is also regrowing without her noticing (her doctor stopped sending her to MRI’s). She made an appointment and had MRI strait away. It was negative and all was good. However, her reaction made me rethink my active role with QANA. I know that people react differently but still someone could react as my friend did and I did not want to steal anyone’s piece of mind.
The years 2006 – 2009 were real struggle to get well again, get my face moving, battle depression and adjusting to going back to work. I was much weaker than after the first operation, had deeper ups and downs, and it took more effort, patience and time to come close to being “normal” again. The main goal was to keep family going and complete tasks at work. Even during weekends, I hardly had energy for friends. It was more about getting ready for the next week.
It took me several years to come to the point when I can convince myself, family members, colleagues and friends that I am “normal” again that we, as a family, can have an almost normal life and that I can do significant and responsible projects at work.
During that “being better” period, I did not want to hear about AN, did not want to talk about it, share or remember the experience. It was all about looking at the future, as if I wanted to put AN behind me (like it never happened). This period also conceded with coming up with the strategy for my retirement and I decided to put all my energy into doing higher duty jobs at work so I can retire early.
Whenever I received QANA Newsletter during that period, I enjoyed reading it but was feeling guilty for being “in hiding” and not “giving to the others”. I would remember the fright I gave to my friend when I told her about my tumour re-growing or I would find some other excuse for not coming to the meetings. It was easier to be a passive member.
Coming out of hiding
This year’s survey prompted me to think about QANA and Phillip’s phone call, followed by a chat over a cup of coffee just before April’s QANA meeting, awaken my enthusiasm to contribute to QANA and gave me confidence that people will accept me (instead of being scared of re-occurring AN).
My husband Slavko and I came to the April meeting (may be that it why it was pouring rain) and ah, I was as nervous as if I was going to the first job interview. I know it sounds stupid at my age but that was how I felt. Little by little, I started recognising faces that I only knew from the pictures in the Newsletter. These years of reading the Newsletters made such a difference in feeling close to the people there. Everyone was so friendly and chatty! I felt guilty that they did not know as much about me as I knew about them but my husband and I managed to talk to almost everyone and introduced ourselves. I promised to Joe that I would write for the Newsletter and hopefully I will write a few more articles besides this one.
I was more relaxed when I came to the June meeting and by the end of it I had that nice feeling of belonging to QANA. It is such a good feeling! I was not in hiding any more. For me, it was the last piece of the puzzle to put into place to be able to say “yes, I had AN but it is OK, the others had it as well and pulled through, they are wonderful people, life goes on for all of us”!
When I look back, I believe that I would have found time and energy earlier to be more active member of QANA if contacted and encouraged by a QANA member during past years. Please do not take me wrong, I am not criticising anyone. It makes perfect sense to respect people’s privacy and let them come to the meeting and become more active if and when they feel like it.
On the other hand, some people need a bit of assurance that it is OK to come (it could feel daunting coming as a newcomer to a group). Sometimes, a bit of encouragement is needed, for people to do that “extra mile” especially with our condition of being tired and basically everything requires an effort. I was stunned to learn from some members that they are driving two hours each way to come the meetings and I admire their determination!
I know that every person is different but if you would like to have a chat with members, have a cup of coffee, taste sandwiches and cakes, listen to a topic, have a suggestion for future topics or guest speakers please do not wait seven years as I did – contact the QANA members or simply just come to the next meeting. It’s worth it.
Queensland Association Member
Profile: From August Newsletter 2013
My story is only short as I have only just started my Meningioma/ Acoustic Neuroma journey.
I commenced casual work in January 2012 (age 57) and had to have a medical for the position. The hearing test showed more loss of hearing in the left ear than in the right. But this did not prevent from starting my new job. Luckily for me, the medical was performed at the same clinic that I attend to see my own GP.
A couple of months after the test, I went to see my GP for my annual flu vaccination. He noticed the results of my medical and said that I really should have my hearing checked further just to eliminate the possibility that I could have an Acoustic Neuroma – highly unlikely but should check anyway. I explained to the GP that I had been to a hearing clinic for a free hearing check about three years earlier and was told then that I was deafer in one ear than the other. The audiologist had told me that I would eventually need a hearing aid.
So off I went to see the local Ear, Nose and Throat specialist. The specialist asked if I had any ringing in the ears. I told him I didn’t think so. Again, highly unlikely that I would have an Acoustic Neuroma, but I was to have an MRI just for elimination purposes. In bed that night, all I could hear was ringing in my ear and I wondered how I had never noticed it before – it was so loud!
The MRI report indicated that I had an Acoustic Neuroma. As I live in Bundaberg, I had to be referred to a Brisbane specialist as the Bundaberg specialist does not do these operations and he was not certain if it was large enough to warrant removal yet.
The Brisbane specialist said that in actual fact it was really a meningioma as it had originated on the meninge (tissue covering the brain), but it also had a tail extension that had grown near the hearing and facial nerves and so also resembled an Acoustic Neuroma. So I sort of have both. The good news was that it is growing slowly and only needs monitoring annually. Hopefully I will never need it removed.
But I discovered something quite interesting when telling my cousin (my father’s niece) about my condition. She also has a small meningioma. She told me that her 48 year old daughter had a meningioma also, the size of a golf ball, and it had been removed a couple of years ago. And even more interesting, her brother (my father’s nephew) had died in 1988 hen he was 51 from a meningioma – it had been misdiagnosed.
It makes me wonder if meningioma’s (and perhaps even Acoustic Neuroma’s) are hereditary. Perhaps one of your guest speakers could answer that question. My ENT specialist was not sure but thought perhaps the neurosurgeons may know the answer.
After only 5 months, I had to give up my casual job. The frequent left and right sideways motion on a swivel chair that my job required made me feel as if I had motion-sickness. The specialist agreed the motion sickness would have been due to the meningioma/ Acoustic Neuroma. I had been on a cruise about 8 months before my medical, and I realised that the slight sea-sickness was probably also due to this. (I had not experiences this on previous cruises.)
I am very thankful to the members who have their stories published in your newsletter because it gives me some insight into what I can expect in the future. I wish your all well.
Queensland Association Member
Profile: From April Newsletter 2013
I appreciate the QANA Newsletter and the people who contribute to it. It takes courage to share our experiences, so after some urging from my husband, I will try to tell mine…
In hindsight the first sign of an Acoustic Neuroma was in March 2010 when I was on a hiking trip in Tasmania and I managed to fall down a mountain! A group of us chose to climb the mountain at the end of our day’s journey so it was probably a bit ambitious, but I like mountains. We trekked through the forest, clambered over a vast boulder field and then scaled steep basalt columns to reach the top. It was a sheer drop into the sea and quite spectacular. For someone who battles arthritis and has had 2 hip replacements I was feeling absolutely exhilarated.
Realizing it was getting late in the day we had to climb down before dark. Carefully climbing down the rocks, stepping across the unsteady surface of the boulders we returned safely to the forest. After several hours of intense concentration we were finally back on a bush track. What happened next is still a mystery but those watching said I looked like a professional stuntman! Because I had stopped concentrating on where I was placing my feet and hands, I just fell. I was completely relaxed and rolled, with increasing momentum, down the side of the hill until I was stopped by a tree. Apart from being a bit shocked by the unexpected loss of control, I was completely unhurt. (I didn’t even feel sore the next day!)
It still fascinates me that my ability to walk- something that usually comes automatically, actually requires concentration and effort. When I was tired I stopped using all the strategies I had been using to stay upright- so I lost it.
The second strange thing that happened was in May when my lip started tingling. I hoped it would go away, but instead it got worse. The GP order a CT scan, thinking it may in some way be linked to my sinus problems. Of course the CT of my sinuses didn’t show anything but my daughter, a radiographer said “Mum you need an MRI.”
In June I had another of those “too tired to concentrate” falls off my pushbike. No harm done apart from torn jeans, but it was weird. However the deterioration in my balance was so gradual, I remained oblivious to any messages my body might be sending me.
I climbed Tibrogargan in July, but we only got to the top of what we called the “drainpipe”, because my friend didn’t feel safe to proceed across the steep sloping cliff face. I was a tad disappointed and decided I’d come back to it in the future- I even negotiated with someone to do it in October. Fortunately for me that was the start of the big wet, so it never happened!
By September I was aware that I felt a bit chaotic and thought I must be stressed- work can be busy and dominate one’s life, so I decided to drop back to 2 days a week, when the opportunity arose. The tingling on my face was also starting to spread and the GP made a referral to a neurologist, however the earliest appointment I could get was at least 6 months away! All the time my daughter was saying “Mum you need an MRI.
”The reduction in work hours didn’t bring peace. My heart was racing, my breathing shallow and frantic… I saw the Employee Adviser to try and deal with my “stress”. She gave me deep breathing exercises as we tried to identify the cause of my new found anxiety. I used to thrive on variety and distractions yet now I was finding interruptions really annoying. I hated the ads on TV- in fact I came to hate the TV, and the radio, and shopping centres…. the list was growing quickly.
At this stage we were enjoying going away in our campervan to idyllic country locations on weekends. It was blissful- no noise, no bright lights, no TV. The fast, rapid fire intrusions stopped! I found the middle of the night, when all was quiet and the lights were out, was my favourite time of day! I just savoured the silence!
The way I make sense of this now is that the brainstem receives messages from all the senses (the eyes, ears etc) through the cranial nerves. Because the tumour was blocking the transfer of these messages I could only process one thing at a time- and slowly! Visual images and auditory input (TV/radio/ noise/ crowds/ supermarkets/ advertising/ traffic) were all bombarding me….
Because I could only cope with one thing at a time, I couldn’t keep up with all the messages, and I just felt overloaded! My theory is the sensory input was blocking up in my head like a Brisbane traffic jam- it was all coming at me but it was only being processed one thing at a time!
I found I was emotionally fragile too, which was really unlike me. I didn’t have any energy for work and I couldn’t bear angry voices, even on TV- in fact I still can’t watch “Vicar of Dibley” or “Everybody Loves Raymond” without thinking how angry they all sound!
By December my tingly lip had spread across my face and my eye was quite numb too. When I poked my eye with a branch I decided the garden would have to look after itself. I felt chaotic and realized I was going to have an accident if I kept driving. My daughter said “Mum you need an MRI” one more time and then went ahead and organized it through her work!
A couple of days before I was due to have the scan I noticed I couldn’t hear out of my right ear. My daughter did the imaging and had to deal with the confronting images, but I am forever grateful to her for moving things along when the GP was happy to keep waiting.
I got in to see the GP that afternoon armed with the revealing scans, she phoned a neurosurgeon and I got an appointment the next morning! How does that work…when I usually have to wait days just to see the GP, and my appointment with the neurologist was still 3mths away! Anyway once in the capable hands of these experts I felt huge relief (although I still felt a little offended I could have something that looked like a golf ball inside my head, without realising it was there).
The radiation oncologist noted marked brain stem compression and it wasn’t far from blocking the ventricles…. sounded grim. He did a few tests that highlighted how I was affected: a tissue on my left eye caused a normal blink reflex- but nothing on the right: walk across the room and turn around- I felt like I was swinging a cat the way my vestibular system slowly reacted to the change of direction: listen to a voice on the phone- garbled nonsense!
Surgery was the chosen option- get it out and relieve the symptoms ASAP! Booked into Wesley 18th Jan 2011– straight after the Brisbane flood! As we were checking in they were still getting power on in some areas… staff had been camped at the hospital for days, some had lost homes and their nerves were raw… Anyway I am forever grateful to that amazing team who despite their own hardships, were total professionals and remained committed to best practice under trying circumstances. I am ever so grateful to that team of brilliant professionals as well as my beautiful daughter, my supportive husband, family, friends and colleagues.
Jan 2013 Two years later I am learning to live with myself! Now when I stand at a scenic lookout and embrace the beautiful view I am also telling myself “don’t fall, stay upright!”; I try to ensure my deaf ear is towards the background noise, but have to accept there will always be things I miss; I still need to concentrate on what I’m doing, as routine tasks are not quite “automatic” (even I can’t read my handwriting!); and I constantly monitor my tendency to become overwhelmed by noise and movement. What works for me is to control my breathing (3 deep breaths), consciously go slower (be “in the moment”), give myself quiet time when I need it, and block what I call the “sensory bombardment”.
(I accept others like all this stimulation, but when I can I turn off the TV and radio; sometimes I just put my finger over my one ear and focus on trees, which I find calming, or just close my eyes .)
It has been life changing as it’s made me take stock of what is important in life! I fear I unwittingly prioritized work, which I had enjoyed enormously. These days I feel very lucky and have a new appreciation of what is important in life. I thought I understood these things, but clearly I didn’t! Since being on leave I have been embracing new hobbies and interests that revolve around my wonderful family and friends, including the most delicious granddaughter. Work just can’t compete with this!
Queensland Association Member