Life stories
Share your story
If you would like to contribute your own story or simply just some thoughts that you think may help other people, please email us and we would be delighted to feature you.
All we need is:
- a photograph in jpeg format
- your name (you can give just your first name if you prefer) and whether you are a patient, carer, relative or friend
- the type of tumour that you or your loved one has, the date it was diagnosed and a very brief outline of any treatment received
- what has enabled you to cope, and/or given you inspiration?
- what advice would you give to others affected by low-grade gliomas?
- do you have a particular quote, or an image, which gives you hope?
In this section, people share their stories about living with a low-grade glioma in order to pass their experiences, hope, and sources of inspiration on to you.
David - diagnosed June 2008
"A few years before my brain tumor was discovered, I had been diagnosed with chronic sinus disease. This came with regular sinus infections (one per month) and headaches. Until then, I had usually only gotten one headache per year, if that, so headaches weren't something I was used to. I had sinus surgery in September 2007 and continued to experience headaches after that, which were then being treated as migraines. I just attributed them to my sinus problem.
One night in June of 2008, I took migraine medication and went to bed. I had difficulty sleeping that night and woke up several times in the night with a horrendous headache and tingling on the left side of my body (face, arm, and leg). I knew something wasn't right, so that morning, I had my wife take me to the ER, where they ran CT and MRI scans. They saw some kind of “mass” in my brain and figured I'd had a stroke. They rushed me to another hospital that specializes in strokes where the neurosurgeon on duty was baffled that a 38-year old male, who seemed otherwise healthy, could suffer from a stroke.
Over the next several days, many tests were ran and it was determined that it was not bleeding or a stroke. The next step was to have a biopsy done to determine what the mass was. I agreed to have it done, and on June 5th, 2008, I was told I had a low grade glioma (a grade 2 astrocytoma). Not having any idea what this was at the time, my family and I just cried. The neurosurgeon there said the tumor was about the size of a lemon and deemed it inoperable because it was attached to the area that controls movement on the left side of my body. I was released from the hospital wondering 'what now,' so I turned to the Internet for help. Bad decision. That was surely a way to get freaked out immediately.
Luckily, I worked for a medical device company at the time that was in the prostate and kidney cancer killing business. We had customers all over the country who worked at the premiere hospitals and research institutions. Some of the executives of my company were able to get my charts and records in to the hands of some of the most well-known and respected brain surgeons and neuro-oncologists in the country. After months of email dialog with those doctors and meeting the top doctors in California, I decided that surgery would be the best option for me. Based on where the tumor was located, I was given a 1 to 3% chance of being permanently disabled on the left side of my body. That meant a 97 to 99% chance that wasn't going to happen. I chose to look and focus on that number and not the smaller number. That combined with the fact that if the surgeon got the cells out that would become more radical and malignant later on in life, this would greatly increase my prognosis and chance for long-term survival. That was more important to me than maybe not being able to move my left arm or leg ever again, especially since my wife had given birth to twin girls in Dec of 2007, and combined with our 5-year son, I certainly wanted to be around to see them graduate, get married, become famous musicians, etc. This surgery would provide a 50% chance of that, so for me, I had to take the risk.
I had brain surgery by Dr. Linda Liau at UCLA on November 10, 2008. After the surgery, I was not able to move the left side of my body, but I knew there was no way I would be in that 1 to 3% group. The number was just too low. The odds were on my side that I would regain movement. After a few days, I was able to move my leg and started walking around the ICU unit. Lifting my arm was possible, but not easy. It felt like I was trying to lift a 100-lb dumbbell, and yet, it was just my arm (something I had taken for granted all those years being able to move easily without any thought ). Every move I made required intense concentration. One week post-surgery, I was transported to a hospital closer to home where I underwent one month of intense in-patient physical, occupational, and speech therapy. Everything seemed to be progressing well, so I was released on Dec 8, 2008, just in time for the girls' first birthday. I've been home for a little over a year now, and while the fine motor skills in my left hand aren't where they were pre-surgery, I can walk, talk, use my arm, and most importantly, I'm alive and feel good. Even a year later, things are still improving.
Needless to say, it's been an interesting year. And of course, while learning that you have a low grade malignant brain tumor is terrifying, I've never once faltered from the idea that I'm going to be okay and will probably live long enough to die from some other cause. I think this comes from the strong support of my friends and family, and my faith. I have made peace with the fact that I may never play the guitar or drums again, but I'm okay with it if I get to see my children grow up. And so far, it looks like that will be the case!
To anyone else going through similar trials and tribulations, I would say hang in there and keep your head up because medicine and technology have come a long way and continue to improve. My nuero-oncologist at UCLA is certain there will be a cure for this someday. Have hope and get lots of opinions!"
See Caring Bridge and my Facebook page, or find me through the online support group
Grace - diagnosed December 2006
"I'm going to start right from the beginning, so bear with me because I might go on a little! The evening of 2nd December 2006, 13 days after I returned from a year travelling, out of the blue, I found I could not finish my sentences while chatting to my sister. We laughed but within a few minutes I knew something didn’t feel right. Anyway, my dad dragged us all to get a Chinese takeaway and by the time we got there I became increasingly confused and was starting to panic. My Dad took me home, while leaving my step mum at the shop waiting for the food. He rang NHS direct and they told him to get me straight to hospital. Within seconds of my Dad's wife getting in the car, I starting fitting. It was so bad they had to pull over and call an ambulance. The next thing I know, it’s the next day and I wake up in intensive care. Apparently they weren't sure I was going to make it, I had four massive seizures which were only stopped by putting me out. Anyway, soon as I was semi-conscious and they could take the tubes out they hurried me off for an MRI. When I was later told I had a brain tumour I was expecting them to tell me I had malarial! So wrong...
I was transferred to the nearest neurological centre at Queens Hospital in Romford, Essex. The doctors spent the next week deciding whether or not to do a biopsy. Eventually it was decided to go for the 'watch and wait' method, as they diagnosed a suspected low grade tumour. The next three months were a bit tough, but got back into working and a held a charity event. My next scan was fine, no growth and they didnt expect it to change for a long time.
I was on Phenytoin for two years with no seizures and no growth. Then I changed to Lamotrogine and in March 2009 unfortunately I had five serious seizures while I was at work and ended up in hospital for more than a week. That was really hard. I was confused for most of the time and was so scared. I even spent most of my 26th birthday unconscious, I was bad that day. When the confusion passed eventually a scan showed my tumour had not grown and I could go home. Sadly, my confidence had disappeared.
Everything was fine again until August when it happened again. This time I recovered a bit quicker and only spent a few days in hospital and went back for another scan a few weeks later. I had decided to transfer my care to Charing Cross as I had now moved to West London since my diagnosis. It took ages for my files to go over and for the comparison to be made... in the time being, I gained a great neurologist (Mr Michael R Johnson) who is managing my seizures regularly and my consultant neurosurgeon Mr Kevin O'Neill.
Then, in late September, Mr O'Neill told me they saw a change in my previous scans and after discussing me in their weekly meeting, it was decided to operate; a partial resection not a biopsy. It never occurred me to question my specialists, I trust them completely and have always filled me with confidence.
So, on 17th November 2009 I had a five hour awake craniotomy where Mr O'Neill and his fabulous team took 80/85% of my tumour out. They couldn't go any further due to the location of the tumour (left parietal lobe) and the risk to my speech and movement. Amazingly, I was out of hospital within four days and was back to work after around two and half weeks. The diagnosis? A grade II Oligodendroglioma. For now I will not need radiotherapy or chemo.
I had 49 staples, greasy hair and steroids that made me blow up, but I'm getting back to normal. It has, however, left me with difficulty in finding words and speaking (i'm told it’s not as noticeable as I feel it is). It’s a bit like having a stutter I suppose. It’s very frustrating as it is the opposite to how I was before, but I know it could have been worse. I'm learning to get on with it and finding ways of slowing down and saying the right words correctly. I always get there eventually!
Unfortunately I have suffered two seizures since my surgery but I recovered very quickly and they were milder than before. I am grateful for that. My neurologist has added Keppra to my Lamatrogine and we're confident that we will find the right balance so I can get my driving license back, not to mention finally getting rid of the horrible seizure anxiety!
I had my 6 month scan in June 2010 and am pleased to report that everything is stable. My surgeons are happy and am hoping there will be little or no change for sometime...if never. I am realistic that things might not always be as they are now, but that’s ok for me right now. I’ve experienced various emotional stages; from wanting to know as much as I can about my condition, to perhaps denial. I like to think of it as just getting on with my life, with the no intention of letting it take over my thoughts and my actions, for as long as I can.
Anyway, sorry its soooo long.I just wanted to share everything that has happened to me. I so hope this helps a little and maybe reassure you that things will be ok. Just be positive and let people support you. If everything else fails....Laugh!!
P.S. Being awake for surgery is actually really interesting! I wish I remember more of it than I do. I'm quite proud!!!"
Jane - diagnosed December 2008
"After being diagnosed with a low-grade brain tumour in Dec 2008 my life has changed dramatically in a lot of ways, some expected and some that have surprised me! Just wanna share some of these bits. It's up to you if you wanna have a peak at my blog."
http://janeshann.blogspot.com
Jeany - diagnosed October 2008
"
My name is Jeany Brazier and I am 43 years old. I first noticed symptoms of numbness and tingling in my rightarm in Sept 2007 which had progressed to my right leg by the December, (a skiing trip in Feb had me falling over all the time due to my numb foot, well that's my excuse and I'm sticking to it!).
I had an MRI in March 2008 which showed a lesion and I wassent away for 6 months during which time I looked up my results online as I had access through my job as a drug and alcohol therapist (urine screens for our heroin users), a bit cheeky but at this point I was desperate to know what I was dealing with, (my younger sister had recently been diagnosed with early onset Parkinsons Disease). This was the worst time, my symptoms became quite bad, with lots of aches and 'fizzing' down my whole right side, the tingling was pretty much constant which meant it was very difficult to switch off. I worked out for myself that I was probably looking at a low grade tumour and a further scan in September 2008 showed no change and a referral to a neurosurgeon who suggested biopsy.
This happened in October 2008 and the results were 'highly suggestive' of a diffuse low grade glioma, but ultimately non-diagnostic. This was very frustrating for me and my partner and others seemed convinced it was all a big mistake, I felt like maybe I was making a fuss for nothing but could not help feeling totally freaked out and secretly planning my funeral! I have since accepted that those that love me may not be able to deal with the news and I try and allow them to deal with it in their own way, after initially feeling quite angry at them for not understanding. Really, how can they?
After the biopsy my memory was poorer and the fatigue was awful. When I realised I would not be able to drive for a year, (having just bought a new mini as a real indulgence for the first time in my life!), I felt devastated and frankly, disabled. Over the next few months I took things much easier, I had no choice really, and began to review my life goals. I had known for a while that my job was too stressful and when I found out my eldest daughter was expecting a baby, I knew I wanted to shift the pace down a gear. I began to say 'no' to other's demands, both physical and emotional, and prioritised my health and well being. I guess I thought if my time on earth is limited, I want to enjoy it and not feel stressed and tired all the time. This led quickly to a much better quality of life. Since then I have cut my work hours and changed organisations, which although hard, looks to have been beneficial. I can still feel useful without burning out. It's taken a lot of soul searching and challenging myself, but I can honestly say this has made my life better, I spend more time with those I love and less doing things that drain me.
I had 4 sessions of hypnotherapy in September 2009 which were incredibly helpful. I no longer think about 'being ill' but just get on with my life. My beautiful grandson Maxi was born in October 2009 and he has helped me keep perspective. My latest MRI in Dec 2009 was still stable and I have happily moved on to annual scans. I no longer feel the need to read all the research and trust my consultant Dr Rees to advise me regarding any treatment. It really helped me when Katie from Astro Fund encouraged me to seek a second opinion, and I took some control by choosing which hospital/consultant I wanted my care to be with. I have found the National Hospital for Neurology & Neurosurgery in London really excellent. Knowing they are at the forefront of research has helped develop my confidence in their care.My tumour would be very difficult to operate because of its position and I am very happy to leave well alone as my quality of life is good. My right side gets very stiff, but monthly massage and daily walks help with this. I feel very fortunate not to get seizures and know things could be much worse. I think it's all about perspective and it feels good to look at this positively:
' ..two men look out from behind the same bars, one sees the mud and one sees the stars.'"
I'm a member of the online support group if you'd like to get in touch with myself or other people going through a similar situation.
Jim - diagnosed February 2005
"I was having strange experiences whilst on my scooter (a Vespa)...after overtaking something, I couldn't figure out why there was still yet another car in front of me. I spoke to my colleagues (a bunch of Nurse Lecturers..for what they're worth!!) they said I was having panic attacks. One Sunday morning my daughter found me having a grand mal seizure in the living room, I'd been pottering in my underpants and T-shirt (my lazy PJ's). It was all very confusing once I came round, I did a quick checklist of things I could have, being a new diabetic was my favourite option....I never considered having a brain tumour. The first I knew that I had a tumour, I heard a student nurse mention it to someone else, prior to the news being broken to me.
I was diagnosed with Grade 2 in February 2005, after a biopsy and brachytherapy, my surgeon was soon sacked, nothing to do with me! Had a craniotomy, and partial resection in August 2006. Did the London Marathon April 2007 for Astro Fund.
Been back at work lecturing, losing your driving licence is difficult, small sacrifice really in the scheme of things. Took my motorbike test, hardest thing I've ever done, took hand gliding lessons (not a joke), and done over 50 stand-up comedy gigs in the North and Edinburgh... god I'm funny (stage name ‘Jam Malcolm').
Started fitting, never fitted before (had 16 Partial seizures in the space of 7 months, 1st one was on my motorbike in Edinburgh after a gig, managed to stay on it) in August 2008.
Further craniotomy and resection on 25th August 2009, due to some re-growth (start radiotherapy November 2009). It remains a grade 2, thought it would be worse.
Ran a half marathon on 4th October 2009 (40 days after the op) in aid of Astro Fund, only raised a little as I didn't have the opportunity to promote myself and didn't think I'd do it with only 2 training runs the week leading up to it. Did the run in 1 hour 57 minutes, see pic, it was the sprint on the final straight.
Yes I've been tired, tablet side effects get me big time (now on Keppra and Carbamazepine) and ‘things' do get me down, I'm usually pretty upbeat for a naturally miserable sod. Cry at anything now....sad songs, injured kids and old men on the tele. Just got to get on with stuff...not at the dolphin swimming stage...never will be, fish are for eating, not kissing."
Click here for an update on Jim's story
"I do realise that dolphins aren't fishes, and that they are mammals (that have sex for fun, other than just an instinct, like me!)
It's been 6 months or so since my last update...Radiotherapy went ok, apart from the waiting (in the waiting room). I had periods of feeling ‘clearer' and sometimes I was ‘sad', no difficulties really. I went back to work a week into the 6 week treatment process.
Hair was not a problem for the first 3 weeks, then I saw my consultant, and he reassured me that on the 3rd week I would lose my hair, he's a nice bloke really, but balding men have no concept of what it is like to have hair!
Then one day I washed my hair (did it over the bath) all my hair fell out, when I say all I mean from going from Liam Gallagher too Clive Anderson. It wasn't nice, to lose it within a few minutes, was like having my personality ripped from me, and given a new persona (the one who wears hats indoors, and get starred at in the shops / gym). I really didn't recognise myself in the mirror, got very touchy when someone tried to take a photo (untagged myself on Facebook, that bad ...really!). Now, I still have a bizarre head, hair on the left and back of my head, and bum fluff on the right...it's having a go. I'd like it back, please.
I hear next week if all that hair loss was worth it, MRI results are due....
Being a lecturer, I have to confront classes of 60 plus on most days, my self confidence has taken a battering, due to the hair issue, and not driving for a year (I know what you're saying, “If that's his only problem, then he's got it easy”). People see me and say I'm coping well, and they like my hair, I know they are just trying to be nice.
This has taught me a lesson, people make judgements in the way someone looks and acts, but there is a lot more to someone than aesthetic, as a nurse I have always been conscious in how people perceive my ‘nonverbal's'. Being on the receiving end is quite unnerving.
Now, I'm at work, memory for the odd word is always an issue. Physically I'm fine, play Tennis and Badminton (to a decent standard, not beach holiday badminton!). Doing the Manchester 10k in May 2010, half marathon in October, and applied to do the London Marathon (again), previously I have been turned down 2001 / 2002 / 2006 / 2008 / 2009 / 2010 (did it 2000 and 2007).
Stand-up wise, I'm in comedy wilderness, did two gigs last year, scared to go back to it, waiting for hair, that's when I'll do it! Started to fill in my application form to attempt to get my driving licence back, always a pain, it's a very slow process, not sure if radiotherapy will affect me getting it back in August 2010.
Now that was up-beat wasn't it? I was asked for my thoughts and an up-date. Must put a load of washing in (job for the day, Rock n Roll), thanks for reading."
Karan - diagnosed June 2009
"My name is Karan Waller and on June 8th 2009 I collapsed at home whilst on my own with my two daughters then aged 9 months and 3 years old. I had felt ill all day but had taken some headache tablets then returned home from work as normal but came around in the living room to my youngest daughter crying and my 3 year old lying on top of me. I made my way to my bedroom with my children and rang my husband who rushed home. At the time I never thought one thing about anything being ill but knew I did not feel normal so Ianrang the doctors and they said that I couldgo to see them. My mother then came to collect me and took me up to the out of hours clinic where the doctor there told me it would be best if I went to the hospital just to be checked out. Once at the hospital they placed me in a bed whilst I still felt out of it and then during the night theygave me an MRI Scan. The next morning I woke up feeling back to normal and was wondering why I wasn't able to go home. As my husband arrived and the doctor came to see us we were both in absolute shock to be told that they had found a brain tumour, at this stage I asked if I could see the image as I really did not believe it. The doctor took me straight into his office and there on the screen was the image of my tumour inside my brain which was very large for most tumours that are found.
I was kept in the hospital for a few days but after being placed on medication was sent home and was booked to go into the Walton Centre for neurology and neurosurgery. I met with my consultant Ms Burns who has been tremendous throughout who advised me on several options to try and remove the tumour, I was then given the option to choose my date for my operation but due to the fact that I had a friend who was getting married in early October and that Idid not want to ruin anything for her hen do and her actual wedding I decided it would be best if I had the operation after the wedding. I was given a date therefore at the end of Oct. Since the operation has taken place, I still have two parts of the tumour left in my brain and now after my operation has taken placethey have found that mytumourhas been diagnosed as 'Left Posterior, WHO grade 2 astrocytoma'. So my scary news now is that at a grade 2 there is a risk of it transforming to a higher grade... :( I struggled incredibly when I came out of hospital as I had lost a lot of my memory, particularly of my children and everything felt strange like I was all confused, I have lost some of my sight in the top of my eyes but it doesn't affect me seeing properly but bright lights can affect me and anything that is mainly above my right eye. I have also not been allowed to drive which has affected me incredibly. So all in all its been one massive journey. Since then though I am getting used to bright lights and have been having speech therapy to help with my memory… although I am still terrible when I am tired with speaking and cannot remember a lot of peoples names... (my sisters have found this funny though and it has turned into a little bit of a joke with them guessing everything I am trying to talk about sometimes.. LOL)
I have recently returned to work and that has made me feel so much better about everything, that along with the support from all my family, my friends, and my mum has been incredible and so has my husband Ian who I just don't know what I would have done without. I started jogging before I went into hospital and it started just as a getting fit exercise but then my sister suggested the runcorn/widnes bridge run and for some strange reason I agreed!! I have had gallstones for over a year now and was waiting for my operation to have them removed (as they could not be done until my tumour was operated on) so when I went into the hospital theconsultant agreed to wait until after Easter Sunday so I can at least do the five mile run.. WHICH at the start was a goal just for me, but now after my husbands mother said she wanted to do something and asked if she could sort the fundraising out it has turned into a goal that has to be met because it now means something to raise money for the Astro fund and also for the Walton Centre that my older sister is fundraising for.
Life is so strange at the moment as some days I find it easy but others I find it hard because of the scary side of knowing that one day anything could happen, so at the moment I am just trying to take each day as it comes. One thing is for sure though, life is far too short to worry about things and that is one of the things that I have got to try and learn to stop doing... I had my most recent MRI scan on the 12th March and will get my results in a month so fingers crossed that there is nothing going on in there ... If all is doing good I am sure I will start feeling a little more at ease about everything :)…One thing is for sure though, I won't give anything up without a fight…my two girls are too young for me to be going anywhere yet :)"
Linda - adult son diagnosed September 2008
"I am Mum and carer to David b.12.12.1979.
David has an ependymoma grade 2, 4th ventricle. He was misdiagnosed, early September 2008, by nine doctors at our local hospital (still makes me angry!) and finally diagnosed by one doctor at a different hospital on 11th September, with surgery on 15th. He then had 6 ½ weeks radiotherapy from end of November to early January 2009.
What has enabled me to cope? Hard one. There are two options - you either cope or you go under - and you cannot go under so you just cope. Inspiration? David's bravery - he never once moaned or complained 'why me' - so how could I? He has been my inspiration.
Some advice I would give to somebody else in my position is to take life one day at a time - don't don't try to 'read' the future. Enjoy 'Now'.
My Favourite Quote? Maybe - I don't know who said it - 'Happiness is a decision you make.'"
I'm a member of the online support group if you'd like to get in touch with myself or other people going through a similar situation.
Rekha – husband diagnosed February 2004
"My name is Rekha and I was introduced to brain tumours by my husband Vijay in Feb 2004. This was after prolonged illnesses that nobody could diagnose and failing eyesight, which finally led to the diagnosis of Craniopharyngioma. Vijay was 34, and I had just given birth to our daughter. Our son was 5. Vijay, the children and I have always believed that we will survive...and here we are, bruised and battered, but not ready to give in. I am a healer, a life coach with the International Coaching Federation, a meditator and a vegetarian. Vijay is a hero and an accountant.
When Vijay was diagnosed with a rare brain tumor (Craniopharingioma) in March 2004, he was 36. Our son was 5 and I had just delivered our daughter.
The diagnosis followed months of illness and an ominously failing eyesight. Within two weeks of the diagnosis, Vijay had to be operated upon. For twelve long hours, he fought under the surgeons knife to keep himself alive. "I will come back" he had told me the night before "Just hang in there"...and so I did.
When I was finally called in by the surgeon, Vijay lay with tubes collecting vials of blood from all over his head. Sophisticated, expensive looking machines were strapped to him. Hardly breathing myself, I looked to his chest ...was he breathing? My eyes filled up as I bit my lips fighting hard. "The operation has been a success. We have got all the tumor out. He should be Ok in a few hours" said the surgeon. I wasn't listening..."Water" a very weak voice said. I jumped to grab a bottle. "Just give wet his tongue with ice" said the surgeon, as he walked away. In the triumph in his gait, I realized for the first time that my husband would live.
What followed was a rickety ride. Vijay was determined to live. He battled an increasing body weight, aching joints, insomnia, and sleep apnoea as he tried to live. He sought security in work, and plunged into it with as much strength as he could. There were said and untold biases at work and Vijay was not given the work and indeed the position that he was promised. He tried to convince his employer by working harder each day, each hour, each minute...I only prayed for him to be at peace.
We moved countries in the autumn of 2005. This was a new start ...and we were determined to be happy...no matter what. Sure enough, our resolve was brought to test. In July 2006, Vijay was hurriedly summoned by his consultant locally who informed us of a recurrence. Our children now 7 and nearly 3 played outside the consultation chamber. We were given the names of people who treated these tumors and asked to make contact urgently.
I was in December 2006 that Vijay was operated upon again. "Hang in there Vijay" I remember saying to him the night before. My world was once again falling apart, and I could do nothing but bear the pain. Once more I found myself sitting outside the operation theatre in agony. "Prove to me that you exist. Prove to me ...prove to me" I kept arguing with God. Another woman sat a little further away, sobbing. Her world like mine was on fire and we stood watching helplessly.
"A complicated case, but I think I have managed to get all the tumor out. He should come round in a few hours with a headache. I have told the nursing staff" the surgeon said. I thanked him mechanically. Vijay took more than a few hours to come around. He had had a stroke ....
It affected the right side of his body, his short term memory, his speech and left him with a third nerve palsy. I just felt raped by life ....and now there was a husband and two children to look after in a foreign country.
Some family pitched in , the employer made some noises, and others just sought gossip. I now understand how tragedy is sensationalized. Moved from hospital to hospital and then sent home when the insurance ran out to wait for a NHS bed, Vijay continued to live. The three year old did not understand why her daddy was different now. The seven year old did not understand why his daddy had to be ill. The thirty five year old did not understand what to do next.
But we all pretended to live a normal life. My son struggled at school. I struggled with betrayal and hopelessness. Vijay struggled to win. He trained his body and his mind. We worked on his speech and his cognition. We acknowledged and praised each other every day. We grew increasingly closer. Every small step was a huge victory. We gave our days a structure, and a routine to work with. We gave our nights the comfort of hope.
Vijay underwent Radiotherapy in June 2007. The surgery had not got all the tumor out as I had been informed, and the residual had to be treated with radiotherapy. Six weeks of radiotherapy, and we still held hands on the way to and on the way back home.
Vijay went back to work partly because there was no other way to support himself and us in a foreign land. Once again, it was the same story. Lack of understanding of brain tumor and a stroke leading to lack of empathy . Once again, Vijay stood his ground and reaffirmed his commitment to deliver his best . In the time of "Leave" that followed Vijay worked harder than ever to defeat his circumstance. He kept himself mentally alert and physically fit. He fought his weight and managed to keep it under reasonable control. He familiarized himself with the history and the of the land that he now lived in. He started to learn Sanskrit, and to play the Piano.
In the past few weeks Vijay has returned to work again in a part time capacity. I can only pray that there is compassion and sensitivity to his "Being" at work. In the meanwhile, Vijay continues to work hard, and is determined to find expression to his skills and talents in all that he does.
He is on his way to finding the meaning of life...
For him and for all others like him, please let us put our hands together and Bless.
Should you like to contact Vijay or myself for anything at all that we could be with you for please send a message to us via the Astro Fund website."
Steffanie - diagnosed January 2008
"In January of 2008 after a bout with strep throat, I started experiencing changes with my vision and severe, debilitating headaches. I've always had headaches, but nothing like this. It was determined that I had had a very rare side effect from an antibiotic, but through an MRI because of it, my doctors found a brain tumor. The tumor was in the right insular area, and they believed it to be a low-grade glioma, most likely an astrocytoma (Grade II.) It was recommended that I follow a 'watch and wait' approach.
Being a 34-year-old mom of two young children, sitting and doing nothing was not an option for me. The neurosurgeons where I live did not want to operate as the tumor is deep within my brain and in a sensitive area. The kicker to my story is that my grandpa passed away in 1992 from this same type of tumor, but his tumor was a Grade IV Glioblastoma Mulitiforme.
So being the control freak I am, doing nothing and waiting for a ticking time bomb to explode was not an option for me. I joined the Astro Fund online support group and read, read, read. I gathered information on who the best doctors in the nation were, and in December 2008, I sent my records to Dr. Mitchel Berger at University of California-San Francisco (UCSF). He is one of the best doctors who operates often in the area of the brain where my tumor is located. Compared to the 10% risk of permanent damage that doctors where I live gave me, he gave me a 1-1.5% risk.
On June 29, 2009, my family and I traveled from our home in Illinois to UCSF for surgery with Dr. Berger. After 8 ½ hours of surgery, he performed a gross total resection of a Grade II Oligodendroglioma. I didn't require any radiation or chemo after surgery, so with regularly scheduled MRIs, I am now on the Watch and Live protocol.
If you'd like to chat to me, you can obviously find me through the online support group!"
The picture in front of the Christmas tree is from the Christmas before I had surgery (Christmas 2008). Obviously one is of my incision right after surgery in June 2009, and the other is of me and my children three months after surgery