Things I have only just realised 2 years and 7 months after brain surgery

Two years 7 months has passed since I had that hole drilled in my skull, poked into my brain to the middle, tumour removed, big bleed and survived the whole thing and was discharged within 24 hours. That’s kind of a big deal.

Again, I’d like to thank all of you who have taken the time to wipe my tears, and listen to my rants over the last few weeks. Especially HUGE thank you to my wonderful husband +Kim Robertson  for helping me through it especially coming and backing me up yesterday.

I have realised over the last few weeks that brain surgery and brain tumours are a big deal. Well I already knew that part. I have realised that the big deal also applies to me. I had a tumour trying its best to knock me off and brain surgery which saved my life. I know you are probably reading this and thinking “how can you not have figured that out?” Fact is it hadn’t really sunk in properly until now.

So what was it that kicked off this spark of understanding? I had a bit of a “wobbly” at school. It scared me half to death and I didn’t know what to do. Should I sit there and hope it would stop/go away? Should I leave early and catch the bus home? What if something happened on the bus? Should I catch a taxi home? What if something happened while I was at home on my own? What if it was a really bad something? Is it fair for Mr 16 to come home to something awful? Should I ask one of my teachers to call an ambulance? What if it was just a random nothing?

Where did all this come from? For eight years I suffered such extreme pain that I was taken to the hospital vomiting and barely comprehensible. The ER staff would treat me like I was either faking it or seeking drugs. After a while I just stopped going, when you get blown off with “take some paracetamol and go home” it really doesn’t inspire you to go back no matter how healthy, or more to the point unhealthy, you feel.

So I have avoided hospitals and ambulance trips like the plague even since surgery. After repeated conversations with certain family members and a friend who is an ER nurse, I FINALLY got it. Brain surgery/tumours are a really big deal. If there is something going on with your head you can’t afford to mess about with it, it may just kill you. If there is ANY brain weirdness… call an ambulance, do not pass go, do not collect $200. They WILL treat you seriously, VERY seriously. If it turns out to be nothing YAY and they won’t mind at all. If it turns out to be a something, chances are that you got it early enough to do something about it. I now understand. I have promised to go to the hospital if I need to!

Part of the funk I have been in is that I have not had my camera with me and been taking photos daily for the last eight months. It’s like suffocating really. I have lost inspiration and am slowly getting it back. Yesterday I discovered that my favourite lens has died. It has had a good 3+ years of solid daily use so I guess it has put in a good lot of work. I was however quite disappointing.

I have had to face up to and accept that I do have an acquired brain injury. I do occasionally need help and it is ok to ask for it. I did that earlier this term at school when my vision failed. I saw the disability officer and we found a solution to work around the problem. I now have my fabulous new glasses and a few other bits so I can see now. The vision failing is part of the brain injury. The path the surgery took through my brain has damaged the part that switches off the signal from the eye with the damage. Consequently they fight for focus constantly.

I have had a doubt of depression through this. I had a meltdown one afternoon after a lot of tiny things had gone wrong (ABI again) I cried my heart out all afternoon and watched myself spiral really quickly down into that pit of despair. I have found some things at school this term challenging. One thing was lack of feedback. If I have done something incorrectly I need feedback so I can do it correctly next time. I have also had a difficult teacher. This all reached a head last week and I was going to go and quit my last term. I felt like I had no right to be there and that I was just reaching too high.

Pity party over. I am going to continue to do what I need to in order to get where I want to be doing what I want to do. It may take longer than I had planned, I may need to rearrange things so that I have some more time for my brain to have time out, but I’ll give it my best shot. At the end of the day, if I don’t get there, I know that I have given it my best and will have other options open to me.

Last month we headed to Sydney for the Colo(u)r Run which was raising funds for the Cure for Life Foundation. This month, this weekend in fact, I am flying to Melbourne for the week. While I am there, my beautiful friend +Charles Strebor  will be having his beard dyed purple as he reached his $1000 goal fund raising for Cure for Life. I am looking forward to spending time with +Al Christensen  and meeting the amazing Melbourne Gplusers. I will definitely get my inspiration back hanging out with them. In fact, I have my own Melbourne photowalk! I’m feeling mighty special J

I hope you are all well and Happy
Julia

P.S. Things get better; sometimes it is just a perspective issue.

Two and a half years!

So, two and a half years. Who saw that coming? I’m not quite sure why this month, this two and a half year marker has felt so significant to me but it does and I’m just going to roll with that.

Firstly I’d like to thank all of you who have taken the time to understand, help, cajole sympathies, empathise, kick my butt, wipe my tears, and listen to my rants and all the other things that have happened in the last two and a half years. Especially HUGE thank you to my wonderful husband for everything, and I mean everything he has endured. Life with a seriously ill person is not an easy one. It can be demoralising, depressing, heartbreaking and hard.

It is now 2 and half years since surgery to fix my brain and start my new life. Right at the beginning of this new life I posted –
‘IF...
I tell you the same thing more than once,
I forget who you are between games and life
I forget your Birthday, anniversary, wedding, other significant day
I forget to call you back, email you, and do something I said I would do or just do it later than I said I would do something that upsets you
 Please let me know, and please try to remember that I have had brain surgery. My memory is a bit all over the place. I forget things, if/when I remember things later I then try to make up for what I have forgotten, some things I just don’t remember at all. It isn’t an excuse; it's just the way things are. I am hoping that things will continue to improve and with it my memory. Kim tells me it was worse before and that I am just become more aware of the holes now. It is very frustrating.
 I hope you will understand’

Things have improved dramatically since then. I forget less. There are still things I don’t remember but that is okay. Everyone forgets things, people, and events. It is normal. Not just normal for brain surgery patients or people with acquired brain injury but for every single person. I have learned a lot of things and come to relax a lot more about things that used to really upset me.

I no longer get worked up about
• Not remembering people
• Forgetting dates
• Forgetting how to do things
• Not scoring the highest possible marks
• Things not going to plan (Okay I’m still working on that one in some instances)
• Health. I can be fixed or it can’t. It is really that simple
• Feeling bad

I have in the last few weeks experienced a few things that rocked my little world and my self-confidence. It is in part that I had forgotten that I had made an agreement with myself and understood that things may not always work out the way I expect or hope they will. Things will happen in whatever way they do.  It may sound silly but the first was wrapped up in study and more importantly pure maths. I need the subject to get into a Bachelor of Biomedical Science. I could get into a Bachelor of Science without it but would have to do it anyway to switch sideways to the Biomed. That shattered my world a bit. I was studying pure maths at the beginning of the year. It was challenging but I was enjoying it and doing ok. I had a bout of brain melt down and had to drop the subject because I was too far behind when I could get back to classes. Finding out that I would had to do it either way frightened me half to death because all I could think of was how ‘hard’ it had been at the beginning of the year. Added to that is that instead of 12 months to cover the 3 units (it used to be 18 months) in 2014 pure maths will be compressed into 6 months with the same content as the original course. I know that I cannot at this point in my life keep up with the subject at that pace.

This little world rocker was followed (minutes later) by a rather confusing email from one of my teachers telling me that I had scored honours for the pieces of assessment I had submitted but the conclusion needed to be rewritten as it was not correct. Colour me confused. I have messed up the conclusion but have score honours? I was utterly uninspired to begin my essay based on that piece of assessment. I then received another email from another teacher telling me another piece of assessment had scored 0 with a maximum score of 0 a minimum score of 0 and an average score of 0 followed up with ‘good work Julia’ I am really getting confused now! I have since received another email from a teacher who isn’t one of mine telling me that part two of the maths assignment is up on the website. I was not aware of any assignment. Exam, yes. Assignment, no. The beginning of this episode of educational confusion threw me into a depression which, while it only lasted a few days, was pretty awful.

I stopped looking at science degrees and started looking at degrees in heath and psychology. I looked at studying a diploma of business, business admin or accounting. I looked through the job pages at office work. I smacked myself around the head a bit (metaphorically) and realised that none of these things are going to get me where I ultimately want to be and that I had made a deal with myself to give it everything I had. Giving in over one little hiccup was not part of the deal. I have decided not to apply to go to University this year. I have sourced a way to study pure maths over the next 12 to 18 months without the added stress of trying to keep up with other subjects. I will, depending on my ability to pass pure maths, apply for University in 2015. If it works out it does, if it doesn’t. It has been suggested that I could do something along the line of neuro-psych or counselling for people with brain tumours or who have had brain surgery.

Another part of my depression was being diagnosed with a tiny cataract which is causing me all kinds of problems with my vision. My brain will not shut off the bad signals from my less functional eye. Consequently my eyes battle for supremacy and focus constantly. By around midday my brain is so exhausted by the battle that it gives up and my sight gets pretty awful. I went to the disability officer and talked to her about it and have come home with a nifty device which will make exams, reading and things much easier on me and give my eyes a bit of help.  I registered with disability services last year when I did my dual cert in Business and Business admin and didn’t need to use their services at all. I was quite proud of myself that I didn’t need to ask for extra time or extra help. I had done it all on my own and managed to finish early. This year has been a different story. I have had to ask for help when my brain had its melt down. Now I have had to go and ask for some real physical hands on help. The thing that shattered me was that I haven’t and still don’t see myself as disabled or needing assistance. This one kind of brought it home to me that may be I do and will continue to need help.  There is no shame in asking for help.

The second part of this is a bit of a revelation to some of you and for others not so much. I am writing my story. I have decided not to start with the beginning of my brain tumour experience. I am writing about the aftermath, the recovery and the things that can be accomplished that you don’t even know you can. There is a small part at the beginning explaining briefly where the story started. For those of you who have already been bombarded with multiple and unfinished versions, I have reworked it a bit more and will try and get it in to better shape before torturing you further.

This month (August) has been and continues to be quite busy. My brother and I participated in the Brisbane Marathon Running Festival in our wonderful new purple Cure for Life running shirts and our matching hyper tubes. We followed that up the same day with a trip to GreazeFest. I was pretty shattered by the time I got home. I was very lucky and honoured to help celebrate an old school friend’s birthday. I was lucky enough to meet up with a few old school mates there as well. It was just what the doctor ordered to pull me out of the misery I was in. This month sees my beautiful husband and I celebrate our 17th wedding anniversary. We will be spending part of that weekend in Sydney for the Cure for Life Colour Run in Centennial Park. I have been thinking about contacting the head Cure for life office about a position they mentioned at their meeting in Brisbane earlier in the year.

Next month sees me head off to Melbourne to see +Charles Strebor have his beard dyed purple. He raised his goal amount of $1000 for Cure for Life as a part of our international team and we’ll be celebrating with good food, good friends, much purple, photography and joy.

I am feeling more myself all the time, more confident in who I am, what I am and where I fit in the world. I am loving life, learning to roll with the punches more than I was before. I am filled now with a sense of awe at all the possibilities that life can bring. I love my family and friends to death, old and new. There is a big bright world out there and I have a place in it. Life is good!

As I recently read – An optimist is someone who figures that a step backward after a step forward is not the end of the world, it is more like a cha-cha

I hope you are all happy and well

In sight

For the last month and a half I have been having trouble with my vision. Blurred, double vision, vision loss. My optometrist, quite rightly, was very concerned and sent me off to see and ophthalmologist to find out what was going on. after a lot of testing and I mean A LOT, they have come to the conclusion that; I have dry eyes so need to use drops frequently, have a cataract in my left eye (as seen above) and that my brain get tired more easily because I had brain surgery. Cataract surgery may help but I can hang out for another 20 or so years for that thanks. I'm too young to have one of these buggers anyway!

Due to the location of the surgery, my brain has trouble suppressing the trouble with my left eye vision. Consequently my brain has my left and right eyes battling for supremacy. I can get through about half the day without too much of a problem with my vision, however by midday all bets are off and my vision goes to pot.

Wednesday I'll be going in to make an appointment with the disability officer to see what they can do to help me with my maths testing. I currently have a great deal of difficulty distinguishing = from - and + from division.I also tend to miss columns of figures on the right side of the page. So, they may give me some kind of magnifying glass or extra time or something to help me get over this hurdle.

While this is irritating, nauseating and painful, it is not going to kill me which is FANTASTIC news. It may slow me down a bit for a while until I find a way to work round it. I am not giving up on pursuing my dreams though. Life does not stop because of a bump in the road.

I may have to modify my photography methods as well. Not going to stop me. Photography is like breathing and I'm not about to give it up. I may have to rely on Auto-focus a lot more though.

Alternately, if I had not had the surgery I would be dead. When you look at it that way, I can cope with pretty much anything.

I hope you are all happy, safe and well!

2 Years 4 months

There are a lot of things that have happened since my 2 year 4 month update.

First of all I did get Honours for Biology and General Applied science! Just a little chuffed with myself about that. I am back at school for semester 2 my last three classes before I finish the course. The end of this stage is in sight. I am getting quite quietly excited about it. I went and spoke with my old Pure maths/Chemistry teacher this week about coming back to do pure maths next year. Her suggestion is to speak to the people at the University about my options. I may be able to get into another science based course with the subjects I have (especially scoring honours) and can then step sideways and may be get credit for the subjects I do in 1st year, or do Pure maths in 2nd year if I really have to have it. It is a massive relief to me. I really enjoyed the Pure maths but it was moving so quickly that when I had 2 weeks off I dropped so far behind I could not catch up and keep up.

The first of these conversations with the uni people will be this month, the next two will be in August. I figure the more people I talk to the more options I may have and any one or combination of the people I talk to may have the plan that fits best.

I reached the first of my fundraising goals and had my head shaved last weekend. This weekend my wonderful husband very carefully shaved my head with a razor (or few razors) and was very considerate of the funky nerves in my scalp that make the pressure of the razor feel like someone pushing really hard on a massive bruise. Our lovely friend came and painted the CFLF Cranes on it and did a spectacular job. Kim took some great photos of the process too. I feel very lucky to have such amazing people in my life.

Next month is MASSIVE. We will be celebrating our 17th wedding anniversary (Better start planning that big 20th). My littlest brother and I will be doing the Brisbane running festival 5k together in our beautiful Cure for life shirts and hypertubes. Kim and I will be going to Sydney for the Sydney Color Run supporting the Cure for Life foundation.

The fundraising continues! Next goal is $2000 and I'll be making an additional 1000 paper cranes. If I get to $3000 I will keep my head shaved for 6 months! I'm going to put a link in for you to go and see the photos from hair to bald and painted. I'm also going to put in a link if you would like to help find a cure for brain cancer and in the process see me do insane things.

I'm sure I'll have more to say later (in another post) but for now, I hope you are all happy healthy and enjoying life!

Photos of the shave and paint process
Watch me do more insane things in the name of finding a cure for brain cancer

70 things I discovered from having a brain tumour .......The Julia Robertson Version

1. Trying to diagnose yourself over the Internet is a terrible idea. It can grossly distort things and it seem like your life is over. The first thing I read on the Internet about my tumour was “can cause sudden death” 

2. Rather than asking Google all those questions rolling around in your tumour-ridden head, Write them down and direct them to your doctor. Every. Single. One. If you don’t write them down, trust me, you will forget them the second you enter the exam room, and will conveniently remember them again well after you’ve gotten home. Not a well spent few hundred dollars and extended appointment wait time.

3. Feel free to run around the house doing your best Arnold Schwarzenegger impersonation, saying “It is a tumour.” My other favourite since I have been home is “I needed that like a hole in the head… oh wait…”

4. Note that the tumour is not the sole reason behind your tendency to enter a room and forget why you went in there in the first place. If that were the case, everyone on the planet would have a brain tumour. 

5. However, the tumour may be the reason behind your headaches, nausea, inability to see straight and amazing ability to become suddenly unconscious (without help)

6. It’s okay to be scared out of your mind.

7. If you are claustrophobic, getting an MRI may cause you to freak out. If they offer a sedative DO accept it. If they don’t offer it ask for it!

8. You will have to remove all metal on your body. I replaced mine with nylon belly bars! That way you don’t have to remember where they came from because you don’t have to take them out!

9. If your pants have metal on them, you will be given one of those terribly attractive backless gowns. You can leave your knickers on but under wire bras are not a happening thing. Be prepared. Track pants, sports tops and your favourite comfy shirt are the best options

10. If everything goes wrong you CAN get out of the MRI machine……… even if it doesn’t feel like it.

11. MRIs are insanely loud. Being at a death metal concert in front of the speaker is kind of like a mouse squeak in comparison

12. Try not to freak out when they lock that cage down over your head 

13. When they tell you that you can look in the mirror built in to the cage of doom. DO NOT USE IT! It has a fantastic distortion effect that makes your feet look like they are 7 kms away and it will takes days to get out of that tube!

14. Compared to an MRI, a CT scan is like a walk in the park. A very short walk. 

15. Tumors are like meth-cooking tenants in a cheap apartment complex. Even after you give them notice of eviction, they can be hard to get rid of. And they often trash the place before leaving.

16. I didn’t name my brain tumour because I didn’t want it to feel like it belonged there (they are sentient you know) However for some people naming your tumour is a great way to show that you are dealing with the situation in a light-hearted manner, like calling it ‘Ima’ – Ima brain tumour (Thank you Stacey)

17. You may be tempted to try and figure out why you presently have a brain tumour. This is a waste of time. Brain Tumors can be the result of a myriad of things, so it’s nearly impossible to pinpoint one cause. Unless, say, you spent your childhood sticking your head inside the microwave and turning it on. Because that’s probably why you have a brain tumour.

18. There is no shame in eating an entire dish of brownies or half a dozen cupcakes in the span of six hours. If anyone questions your behaviour, explain that you are eating for two. It will however take years to get rid of all those cupcakes later.

19. Shaving your head pre op is a completely rational thing to do and can make you feel that you have some semblance of control over it all

20. The upside of this experience is that you now have a great excuse for forgetting people. Behold:“I’m sure I am supposed to know who you are but I don’t. Please don’t take it personally I had brain surgery and lost my memory. It’s nice to meet you….. Possibly again?”

21. When you look back at your life til this point, and you will, there are some things you did that you wish you hadn’t. 99% of them just don’t matter 

22. Yelling, crying and being angry at those close to you is a completely normal and shitty consequence of being scared.

23. The world will continue as normal around you and it will feel WRONG. Feel free to stamp your feet and cry

24. Screaming at the TV, any inanimate object or Internet is perfectly acceptable, too.

25. Sometimes the most insane things will take your moment of serenity and turn you into a soul raveging hell beast. Usually it will be someone being negative or just plain stupid.

26. My tumour went into a tumour bank where I fantasize they torture it with cruel and unusual instruments.

27. When you wake up it is kind of funny to ask what the license plate of that truck was

28. Find a brilliant neurosurgeon. You are literally putting your life in their hands. If you don’t trust them find another one.

29. When you tell friends about your new friend they may react in strange ways. Some may head for the hills never to be seen again. Some may be devastated and have a far worse reaction that you did, and let’s face it, it’s YOUR brain.

30. You may notice that people may start acting weirdly around you. Now is a good time to remind them that brain tumours are NOT contagious.

31. Understand that your medical condition provides a rare opportunity to serve as a life-lesson for others. Mostly that they don't what what you have.

32. The look on your loved ones’ faces after you tell them about your tumour will remain etched in your mind and heart until probably the day you die. Considering that, it is probably best to tell your parents what’s going on over the phone. Do not lead with “I have a brain tumour.” That sort of tends to freak people out

33. If you have someone who is completely self-absorbed they may respond to your news with things like.

“I have an exam due in two weeks”

“I need to borrow your laptop til the weekend is that ok?”

Do not worry. You did in fact tell them, it has just completely failed to make any impact on their mind at this time. Later they may ask you about the conversation but it will probably still be about the lap top.

34. You’ll be amazed by how many people you know who know or have known other people with other kinds of tumours. There is a bit of a difference between a 1 kg stomach tumour and an 8mm brain tumour. It is all about location location location! Stomachs stretch, grow and generally try to accommodate this new found growth. Brains have no spare room. 

35. You have thought your husband was ever so slightly insane. Your suspicions are confirmed when you come home to find him curled up on the lounge clutching his freshly torn calf muscle. This was of course sustained while bouncing around the lounge room pretending to be Tigger!  I love you Hunny

36. Looking at your children will make you cry…. It will also make you laugh, and cry and yell and cry some more. You have just reverted to being a two year old emotionally and that is normal.

37. It is normal to spend the night before your surgery having your husband taking photos of your head and hair from different angles…… 

38. Shoes… make sure before you go in for surgery that you have some that you can get on without looking down or in any way inclining your head.

39. Pjs are your friends. 

40. Before surgery, make lists of the things that need doing and important things like passwords. You will not remember them. Give the ‘to do’ lists to anyone who (mistakenly) offers to help.

41. You will sleep. Most hours of the day you will be asleep. Accept it and go with it.

42. If you have rehab to do, do it. Your brain and your body will thank you for it.

43. Reheat-able meals are the best thing you can send anyone recovering from anything. 

44. Stay hydrated. The day of surgery will be a dry one and there is nothing quite like your anaesthetist telling you he is just going to knock you out now because putting your arterial lines in while you are awake will be far too traumatic because your veins are so floppy and flat. No really!

45. Do not freak out when they tell you they will be putting you on a respirator for the surgery. It doesn’t mean you will be on it forever

46. If they don’t give you a shiny metal plate (and they really are pretty) you will have a spot/s on your skull with no skull in it. Do not knock or bump them, they hurt. You may find that if you turn your head in the right direction that bit of scalp will act like a drum skin in the presence of some seriously big bass

47. Drink lots of water and pee a lot. It makes the doctors happy, as does pooing and walking. If you can do those three and know who you are they will let you go home (usually)

48. They do not wash your hair after surgery and you won’t be allowed to for at least ten days after surgery. Blood and CSF caked in your hair IS disgusting. Dry shampoo does NOT work. 

49. If you are going to attempt the hair wash have someone else do it for you over a sink salon style and do not get your incision wet!

50. Brain surgery is the ultimate in bad hair days. You will have bits that don’t match up or even point in the same direction anymore. Get it cut and try a new style or just shave it and start again (well after your staples or stitches are out and have healed nicely) 

51. The total bill for my surgery was around $60,000. We paid about $30,000 out of pocket. Health insurance is the difference between having a neurosurgeon you have chosen and are comfortable with and having whoever is on the list. You will possibly see a completely different one each time you go in for follow up.

52. Walking across the room will be a huge achievement unto itself.

53. Holding a coherent conversation for more than a minute is also monumental..

54. Your husband (or wife) will be the one showering, dressing, fussing with and generally doing all those things for you that you used to do for yourself and probably have been since you were 5 years old.

55. Vomiting is not a good thing at the best of times it is indescribably evil now.

56. Depending on your surgery, it will take a while before you can manage to function or even feel like a human. Daytime TV is still that bad but you won’t care.

57. Going out in public with your stitches or staples proudly displayed will probably receive a variety or responses from “Wow that is AWESOME” to little old ladies looking at your husband accusingly.

58. Having your stitches doesn’t hurt, unless they stick in which case the hurt like a ^&^.

59. Take your medication. Don’t take your pain killers if you don’t have pain, they just make you more spacey.

60. Everyone else will be more worried than you are..

61. You probably won’t remember much of this as your brain is literally in shock and not really recording much other than WTF have you done to me!!!

62. You will repeat yourself. This will vary from hilariously funny to frustrating to those around you.

63. Insane things will pop into your head that you thought your surgeon said that can’t possibly be true “Just tell the airline you bumped your head and you’ll be fine”

64. You will not be in control of your life for some time. Get over it and go with the flow. Fighting it just wears you out.

65. Finding permanent (or not so permanent) marker on your face/ scalp is not actually your family playing games with your head. They used it to line you up properly. 

66. That dent in your forehead that you don’t recognise IS new. It is from the ‘halo’ they used to stop your head from rolling round while they drilled in to it. It will go away.

67. If you feel the need to journal your experience, for the love of god get someone else to do it for you. When you finally get around to even thinking about doing anything with it, it will look like Swahili.

68. Do not over do it. You body and your brain will hurt you if you do. They love you but will not watch you damage yourself…. Unless it is stupidly funny.

69. Go easy on yourself. I got smart and decided that since I wasn’t allowed to bend over, I would sit on the floor to vacuum under the bed. I smacked my brain hole on the corner of the bedside table and sat for 20 minutes trying desperately not to move or throw up. Who needs to vacuum under the bed anyway!?!??!

70. If it needs doing, let someone else do it and enjoy your new-found royalty status.

Some of these borrowed from http://www.everywhereist.com/70-things-i-learned-from-having-a-brain-tumor/

Perseverance

The G+ 2 year anniversary walk went well in spite of the weather. We had fewer people than would have been there if it had been a sunny day, however we had more people than we expected for such gloomy damp weather! Thank you to all of you who came! Who knew it could take 6 hours to walk 3 kms.

I have persevered with the knitting and managed to produce 2 beanies so far! Jolly good thing too because I hit my first goal and had my head shaved on Saturday! If things don't work out the first time you try them, stick at it, you'll get there :) 

Today was my first day back at school. It was fantastic! General Maths is not quite as exciting as pure maths but I like it all the same and I have a pretty nifty teacher so, win/win.

A few days ago there was a report on A Current Affair about Charlie Teo and his crusade to cure brain cancer/tumours. This is one from May which contains some very important information which I keep trying to explain to people. Benign brain tumours are not “safe” they can cause significant health problems, damage to the brain and in some cases death. Obviously brain cancer is nastier, benign tumours should not be dismissed though.

The drive to raise funds for Cure for life continues as ever and things are starting to pick up. If you would like to help to find a cure for brain tumours/cancer please consider donating to one (or more) of our international team. Linky

To follow up from the last post –I went to the Doctor who told me the optometrist was not overreacting. I went back to the optometrist who then tried to make an appointment with the preferred neuro ophthalmologist who can’t get me in to the end of October, so am booked in to see second choice ophthalmologist at the end of this month. Meanwhile blurry/double vision continues. To a certain extent my brain is trying to compensate but tends to conk out around midday or early afternoon and has a hurt.

I am really quite enjoying this new experience of having a shaved head. I don’t feel like I have lost my identity and I am finding it pretty fantastic to be completely honest.

I hope you are all well, happy and pursuing your dreams.

Frustration

frus·tra·tion 
/frəˈstrāSHən/
Noun
The feeling of being upset or annoyed, esp. because of inability to change or achieve something.
An event or circumstance that causes one to have such a feeling.
Having knitting patterns, needles and wool and being able to **** every single pattern up.

I re-taught myself to knit and managed to make a brilliant brain hole warmer (see right). I then started and had to unravel many beanies. You see in not too much longer ($160 longer) I will be having my head shaved. It is winter so my head is going to be very cold, cold brain holes HURT… A LOT! So anyway I decided that since I was so very clever as to have knitted this brain hole warmer that I could and would make myself a variety of beanies to keep my bonce toasty. I am currently having fine motor control issues, concentration problems and most importantly double vision. I don’t know what possessed me to think I could manage beanies! 

I went to the optometrist today and he did a lot of test to see if he could find out why I have this double vision issue. Upshot of that was - My eyes are amazing. Not in the way that +Kim Robertson or +Lynda Cochrane have said. The optometrist is amazed that they react the way they do. They are also incredibly light sensitive. He can't fix the double vision with a new pair of glasses.

I've made an appointment with my doctor to see what she thinks before the optometrist has me off to see the neuro-ophthalmologist or back to my neurosurgeon! Back to the optometrist Monday to see what is happening. 

Silly medicos getting wound up because you've had brain surgery.

We will see what my doctor says tomorrow!

I am not particularly bothered really. I'd like to be rid of the double vision which is causing some phenomenal headaches and nausea, but I don't think that neuro-ophthalmologists are needed. 

No point worrying about these things. 

They can be fixed or they can't. 

If they can't - cope.
If they can - get em fixed
Nothing to worry about

I had my self-indulgent cry yesterday. Today I am determined as ever to get through it. I have come this far and survived. I can do this.

Saturday is the world wide 2 year G+ Anniversary photo walk. +Hendrik Ebber and I have organised the walk for Brisbane. I will be there with camera and going to have a wonderful afternoon. 

Right now however I'm going to go and snuggle down in my bed and have a rest while I listen to the rain. I hope you are all happy safe and well.
♥