|Brain Tumour Survivor
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|Author:||Rob Hart [ Mon Aug 06, 2007 10:01 pm ]|
|Post subject:||Mr Lucky|
Hi, my name is Rob and I am a 48 year old father of four from a place called Blakeview in the northern suburbs of Adelaide, South Australia.
A fortnight ago tonight, I was preparing to go into hospital to have my tumour removed.
I am now home and on the road to a full recovery.
There was a lot of speculation regarding exactly what was in my head.
Originally the consensus was it was probably just an acoustic neuroma (which was great news given that I knew it was benign and the procedure is usually quite straightforward). However from the start, there was always speculation that whatever was there was "different" in some way, shape or form.
As I had a daughter getting married (later this month) and also was offered a job back here in my home state (I was in Brisbane at the time of first diagnosis) we decided to delay the procedure for 6 to 12 months as it wasn't really providing me with too many challenges.
Upon arrival back in South Australia, I finally got around to getting a referral to the suggested Neurosurgeon, Dr Stephen Santoreneos. After another MRI his diagnosis was a little more blunt. He was quite certain it wasn't an acoustic neuroma and suggested the best course of action was to get in and see what we were dealing with.
His attitude was fantastic. He didn't mollycoddle or alarm. He just told me the facts, gave me an idea of the stats and possible outcomes and told me to go and enjoy myself for a few weeks before presenting myself to hospital.
I don't know if "enjoy" myself is what I would call the four intervening weeks before the op, but I do know that the whole experience has been an amazing journey.
While I mainly remained supremely positive (possibly to the point of denial on occasions), there were some very low days too. I'm a forty-someting working class bloke from the north of England. We weren't brought up to display our emotions or make a fuss and find that sort of behaviour uncomfortable and embarrassing.
All of a sudden my moods were a rollercoaster and all of the little things in our lives we all take for granted took on such greater importance.
I really discovered how fantastic my family, friends and employer really are. The support (even sometimes misguided) was so much appreciated and it was (is) humbling to receive so much love and comfort.
During the wait for the op I obviously googled "tumour" and tried to find stories as similar to my own as possible, searching for good news/bad news/any news.
The recurring theme was that every case was different and I don't now if I learnt anything specifically useful, but I don know the process of reading this site in particular was very helpful in my mental preparation for what I was facing.
Following some of the stories on this site I would be sitting in front of the monitor with tears streaming down my face at the tales of bravery and determination of what so many here are going through and of those who fought and lost.
I did all the dumb stuff like plan the music playlist for my funeral (just in case - I didn't want some Funeral Director picking naff crap like "Wind Benath My Wings"). I did my best to see or speak to everyone important and let them know how much I loved them.
I organised a bbq for close friends on the Sunday before the op and planned to get very drunk, smoke too much (I've been trying to give up since diagnosis) and make a big, teary, spectacle of myself. As it turned out, I kept myself together and in fact, the two days before heading in for the procedure were probably the calmest and most positive I was during the entire journey.
My operation took place on Thursday July 26th at the Royal Adelaide Hospital. Apparently it took about 5 or 6 hours.
The culprit was a Grade 1 sub-ependymoma which they tell me is a benign tumour on a premature brain cell. They managed to remove every last little bit of it so there should be no radio or chemo required and the rate of return is apparently very low.
The first few days in recovery were tough. Basically it was just disorientation coupled with the discomfort of my throat and all the other tubes hanging off my body. They fed me through my nose for a few days which was an experience I hope I never have again, but overall, my recovery so far has been better than I could have possibly hoped for.
I had my staples removed and was discharged on Thursday August 2nd and as my prescription was going to be a couple of hours wait, I even managed to walk the 10 minutes from the hospital to my workplace to say hi to the gang. What a positive message that sent to people!
My hearing on the side of the operation is very bad and loud noises or multiple stimuli are hard to deal with. My balance is pretty good most of the time and I will be walking my daughter up the aisle in three weeks and should have no problem returning to work in around 6 weeks time.
I just try to set myself challenges to improve a little more everyday, but my biggest mistake when getting home for the first few days was trying to attempt too much too soon.
That's my story. I'm very, very lucky and I know it. I wanted to share this just in case it helps or inspires anyone out there who is just like I was such a short time ago.
If you would like to correspond, just drop a line. If you are local and would like to chat, get in touch and I'll give you my phone number or we can meet for a coffee.
Keep smiling and my thoughts and love are with you all.
Rob Hart. Monday August 6 2007.
|Author:||susannah [ Fri Aug 31, 2007 5:36 pm ]|
|Post subject:||MR LUCKY|
What a lovely story - warmed my heart a bit. You did so well and I hope it has continued since you wrote. I am also a lucky 48 yr old bunny, did the music planning bit, googled like mad too and ran before I could walk. I am settled now, only get the eebejeebees (is that a word?) when I am due for a 6 month scan - this month. I am with a great Neurosurg at Queen Elizabeth Hosp, Birmingham, England. My Grade 2 unwelcome visitor could only be partly removed but because of that they keep a closer eye on me I like to think. I am doing good. Yes, this site was/is a boon. Just to know you're not alone and answer 'simple' questions.
I enjoyed your posting. Very real and honest. Sorry it was not a better subject though
Take care and cherish flipping everything.
|Author:||indiepunk [ Sun Sep 02, 2007 5:23 pm ]|
Glad to hear that you are on the road to recovery! Quite a coincidence that I was also in surgery on the 26th and am now making a full recovery at home. Glad to say that the only side-effects I have noticed is a slight flashing in my left eye and my short term memory is still a bit patchy, but that's a small price to pay! The doctor said at the time that if I had left it a few more months then it would certainly have killed me.
I guess I was lucky that they gave me no time to think about what was happening as they operated 12 hours after they found the thing and I kinda went into shock as soon as I found out. I had only gone in for a routine CT scan and thought I would be home a few hours later with a bag of medication that would stop the migraines. If I had to wait then I would have backed out for sure. I am very lucky that I live very close to a hospital that specialises in neurosurgery and I had one of the UK's leading teams working on my case. My only complain about my ten day stay in hospital? The food was appaling!!
Now its the waiting to return to work and have that first beer.... should get the all clear this week with any luck return to work. Being at home 24-7 and playing on the Wii by myself has become just a little boring.
Take it easy and I hope everything goes ok.
|Author:||Rob Hart [ Sun Sep 30, 2007 1:32 am ]|
Thanks for the replies guys. Glad to hear that you're both doing well too. My recovery since I posted has been pretty good although I struggled a bit when the course of steroids ended. My left ear is still ringing and the entire left hand side of my head still feels numb/unusual with occasional stabbing pains. I've also found it difficult to sleep as my mind seems to race and I can't relax. I then get really buggered and find I want to sleep all day. The only other effect is that a nerve was damaged a little and my palate is out of line, making it difficult to swallow so eating is a bit of a chore. I saw my surgeon a few weeks ago and he said I could return to work if I felt up to it and I put in a full week, but I must have overdone it as the following week I was back at home completely knackered. Still, all these things are minor compared to what could have been, so no complaints.
Susie, I think the word you were looking for is "heebeegeebees"; not sure if it's a "real" word, but I certainly know the phrase. It was also the name of the band who did a parody of the Bee Gees back in the seventies called "Meaningless Songs (In Very High Voices)" - how's that for a piece of useless trivia?
I know what you mean about playing computer games solo too Peer. I've become pretty good at Pro Evolution 6 on the Playstation duriing my recovery! And just to make you jealous, I was told I was allowed to drink from the day I got out of hospital. I had a shraz with dinner and a couple of stouts when I got home!
I hope things continue to get better for you both and the offer to anyone in South Australia to get in touch if they'd like to talk is still very much open. Just post here and I'll give you my phone numbers so we can organise to meet up.
Best wishes to all, Rob.
|Author:||Rob Hart [ Tue Jun 03, 2008 1:46 am ]|
It's now ten months since I posted my original story and I'm kinda' guilty that I haven't visited and contributed to the forum more regularly.
I think I've been so focused on putting the entire episode behind me I've tried to avoid anything that reminded me of it.
A little earlier tonight I was watching a tv show that featured a beautiful little girl of around six years of age. She had been battling a brain tumour and it's after effects since just after she was born and was visiting a surf lifesaver she had heard on tv. I say "heard" as she was blind as a result of her condition. Just witnessing her bravery and beautiful attitude moved me to tears, but then when the credits rolled and a super came up in tribute and informed she had recently died I lost the plot.
I know that during my hospital stay I immediately realised how fortunate I was compared to the youngsters who were doing it far tougher than me.
Anyway, as a result I thought I'd update my story in case it helps anyone else who may see similarities and benefit from some reassurance.
Reading back my original contribution I'm struck by how positive and upbeat I was. That was definitely how I was feeling at the time, but over the following months things weren't quite as straightforward.
I jumped back into work with gusto, trying to prove to everyone (especially myself) that everything was great and nothing had changed since the op.
In retrospect this wasn't a great idea. I was still struggling with my hearing and thought processes and tiring easily. I'd wear myself out and take several sick days to recover, spend the entire weekend in bed and had no desire for any social life.
Workmates I've known for a long time have told me my personality was very different and I was struggling to relate to people on a personal level.
I got to a point where I was feeling really low and visited my GP to try and figure out what was going on. I was unmotivated, negative and had no interest in anything.
His tests indicated I was suffering from extreme stress, anxiety and depression. I knew that things weren't great, but this came as a real shock. I declined his suggestion of medication and figured I would try and work myself out of it.
I was ready to quit my job as I felt that it was the cause of many of my problems, only to once again be overwhelmed by the generosity of my employers. They listened to what I had to say and suggested stepping back from my managerial role and just concentrating on what I do best and just be responsible for myself.
This adjustment really helped and over the last few months I seem to be getting back on track, enjoying work and behaving a bit more like my old self.
Socially I still struggle. Before the op I was extremely outgoing and needed to be out and about and around friends and doing something every weekend. I now struggle to make the effort, see very few people and rarely go out on weekends unless it is for a special occasion.
Because of the effect on my hearing I struggle in environments that are noisy or where there are multiple people talking - the whole thing becomes a cacophany and drives me nuts after a few minutes.
I did read somewhere that depression is common following brain surgery, but by detailing my experiences it may help pad that phrase out a little for anyone who is wondering how it may manifest itself.
It's weird that even though I realise how fortunate I have been in relation to the tumour itself, these other issues seem to become overwhelming. You want to slap yourself and tell yourself to quit whining and be grateful your situation is so positive; but it doesn't seem to work like that.
I don't know if I'm qualified to offer advice to anyone since I seem to be still bungling my way through recovery, but for what it's worth I would say "don't push yourself too hard or expect too much too soon".
I do know that one thing I do want to involve myself in is some sort of support group for people who are facing or recovering from brain surgery here in Adelaide. I know it would have benefitted me (probably still would) and I'm keen to offer whatever assistance I can to help. The problem is I have no idea how to begin putting something like this together or who to speak to. If anyone out there can offer advice in this regard it would really be appreciated.
In the meantime, I'm doing well and wish you all love and support in your own individual situations.
Love and best wishes to all, Rob.
|Author:||kenobewan [ Wed Jun 04, 2008 10:44 pm ]|
I really appreciate your follow up story. Its amazing how this disease can affect you emotionally. I can relate to some of your experiences.
I also have a great employer who has supported me well. I'm glad that I am not in a managerial role. I began to distrust everyone work. When something went wrong I believed someone was setting me up. It took a few weeks of discovering my own errors for me to believe that it wasn't anyone else.
There is actually a trial with one of the tricyclic antidepressives
Clomipramine that is having an effect on brain tumors. Although I haven't been on antidepressives, I felt like a sook crying at sad movies for the first couple of months after surgery.
Stay positive. I watch a comic movie or comedian at least once a week. I can't recommend cardio or going to the gym enough. I also catch the bus to work and shut my eyes for the journey. As you have identified managing stress is important and there are simple ways to achieve this.
Most important is plenty of sleep and naps. I'm guilty of not always doing this - I'm in IT and a natural night owl.
Look forward to your next installment :)
|Author:||ksplat [ Thu Jun 05, 2008 6:03 pm ]|
|Post subject:||Re: Your update|
Thankyou for taking the time to update here. It is great to hear from you. Sorry you have been through such an ordeal, but you sound like you have come through the "tunnell of hell" & that's fantastic.
I commonly read about the depression suffered after experiencing such a "life changing" illness & I know my Bro - Mark - suffers from depression with his illness & subsequent deficits.
Thinking of you. Take it easy on yourself.
|Author:||richard1 [ Thu Jun 05, 2008 6:59 pm ]|
I read your story and update and it sounded so much like mine that i had to reply.
I also had a grade 1 tumour. It was a ganglioglioma that was removed from the rear of my brain, close to the cerebellum. It all happened so quickly for me - i had a couple of seizures, 1 of them in a hotel room in Singapore while on a work trip - very scary! the other one was in the office in front of all my work colleagues - which is a great way to freak everyone out! anyway, next thing i know i was in the neurosurgery unit... the upshot of all of that was i am extremely lucky and they removed the entire thing.
after some rehab to sort out a few balance and walking issues, i tried going back to work after 2 months and it just didn't work out. i was trying very hard to mask the side effects but i got very depressed and anxious. i also couldn't think straight and my ability to handle pressure of any sort was greatly reduced. My work were fantastic and after a few weeks of struggling i went with my wife and spoke to my boss who just said take as much time as you need.
I had to go to a psychiatrist to sort out my anxiety. I ended up getting back to work late last year and it hasn't been easy - i've really had to dig deep on a few occassions! however, i think i'm getting there.
One of the most amazing things that happened was Tracey my wife became pregnant last year, and our son Curtis was born on May 5th at 1am. The same morning at 8am i had a follow up mri booked, so went straight from one floor in the hospital to another, without any sleep. It was such a weird mixture of happiness and fear. Given the circumstances they rang me that afternoon and told me there was no sign of re growth - so i could relax and enjoy the birth of our son!
Well - thats my story... i thought after they had removed this thing it would be back to normal - its been a longer journey than i expected! i have had issues with depression and anxiety in particular. also socially i feel different so i can relate on that level also.
It sounds like you are doing really well and I wish you all the best with your recovery!
|Author:||luckyescape [ Tue Apr 16, 2013 7:47 pm ]|
|Post subject:||Re: Mr Lucky|
I've just found your posts. I know they were a couple of years ago, but I hope you're still checking posts occasionally.
In October 2012 I had a bad headache for 4 days (my only symptom) and after being sent for a CT scan, had my first seizure and was sent to hospital. A craniotomy 3 days later removed a benign type 2 meningioma. SO I have a pretty good prognosis, required no further treatment, and just ongoing monitoring with 6 monthly MRIs. But as you mentioned in your messages, it's an emotional rollercoaster. I am also in Adelaide and desperate to talk to someone who's been through something similar, so if you're still up for a coffee with people in Adelaide, please let me know.
To top it off, I was made redundant during my recovery ("budget issues"!) and my confidence got an extra knock.
I feel so lucky that my hidden tumour is gone and I have recovered well, but there's a lot of stuff to deal with and knowing I'm not alone and not completely crazy would be fab.
Hope you are still going well.
|Author:||sue.r. [ Thu Jul 18, 2013 11:31 pm ]|
|Post subject:||Re: Mr Lucky|
Hi Rob and all. I have a similar story! My only symptom was that my hand wasn't feeling like it was part of my body. I went to the Drs who sent me for a ct scan and the next day I was in hospital having awaiting surgery which happened the following week. It was all very quick and thankfully everything turned out ok. It was a grade 1 meningioma, slightly large and crossing some line at the back of my head. I was very lucky as I have no side effects nor am I on any on going medication. The Neurosurgeon said I would have been dead in a year due to its size. I have to go back to the RAH every year for a MRI (which I have to have sedatives for lol .... the surgery was a breeze but put me in a machine and I go to water). This was last year and I have to go back in October. It happened so quickly that I think its only now that I'm freaking out about it. Is that weird???
I hope everyone is still going along ok.
|Author:||luckyescape [ Tue Jul 23, 2013 2:56 pm ]|
|Post subject:||Re: Mr Lucky|
That's a great outcome.
I had my surgery at RAH in October last year as well!
There have been some emotional ups and downs for me. I think that's probably understandable after such surgery, but not many people to talk to who have been through something similar.
If you'd like to meet for coffee or have a chat on the phone, I'd be happy to connect.
Let me know if you are keen and I'll work out how to get you my number.
All the best
|Author:||sue.r. [ Tue Jul 23, 2013 8:09 pm ]|
|Post subject:||Re: Mr Lucky|
That would be good. My email address is firstname.lastname@example.org I had my surgery in June. Who was your surgeon, mine was Stephen Santoreneous (I think the spelling is correct) Although Alistair (trainee surgeon was the one I had the most contact with). Look forward to hearing from you.
|Author:||luckyescape [ Thu Aug 01, 2013 9:52 pm ]|
|Post subject:||Re: Mr Lucky|
Have emailed you at the address you gave me. Look forward to hearing from you.
|Author:||caz [ Tue Sep 24, 2013 3:20 pm ]|
|Post subject:||Re: Mr Lucky|
I was diagnosed with a meningioma in June and had it removed on July 19th this year. Stephen Santorenous was my surgeon and I was at the Memorial hospital in North Adelaide.
It was such a huge shock being diagnosed, it all began last November when I began to lose some vision in my left eye. It turned out I had a meningioma the size of a golf ball pressing on my optic nerve.
My surgery took about 7 hours all up I think. I came out of surgery really well, the only sacrifice was I lost my sense of smell on the left side. I had double vision for about five weeks after but it is starting to come good now thank goodness.
It was a terrible ordeal that I hope I never have to go through again, it certainly makes you put life and trivial things I worried about into perspective. I have been back for a consult with Dr Santorenous and he was really pleased with my progress and that I could see out of my left eye as there was a high chance I would have gone blind in that eye. The tumour was also the slowest growing form of meningioma so it had been there for about 15 years.
I have to have MRI's for the next ten years, the first one being in December and I'm hoping the tumour has all gone. He can't give any guarantees any cells weren't left behind so I have to wait. I'm hopeful though as he is a brilliant surgeon.
Its great reading other peoples stories, I had never heard of a meningioma and I'm sure as well as me, you all thought you would never have to go through brain surgery! When I was in hospital the nurse in intensive care told me that it is surprising how many cases of these tumours he now sees.
I would really like to hear back from anyone if you are still reading these posts :-)
|Author:||kenobewan [ Fri Sep 27, 2013 9:01 am ]|
|Post subject:||Re: Mr Lucky|
Well done getting through the treatment!
Hope that you keep up the positive attitude. Certainly does put things in perspective.
I suggest giving to others, I do voluntary work, if you want to increase your happiness.
This is one of paradoxes of life - less is more. Exercising (not working) increases my joy of life, slowing down my brain (not thinking as much) increases my peace and giving to others means I receive love in return :).
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