Friday, July 12, 2013

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 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.