Its 7am and the nurses have finished prepping me... Now its just the bloody waiting again as emergency surgery cannot be scheduled with confidence. To kill time, I'm going to tell you about stuff I'm researching. Caveat: I am not a doctor so I'm sure there are errors or gaps in my knowledge but its close enough, and its still interesting.
Brain cancer damage and recovery
As you know, theres not much spare space under the skull. Theres brain, small organs like eyes and hypothalamus, the top of the spine, and CSF filling anything left. When cancer (no matter what type) gets growing up there, as it gets bigger, theres nowhere for anything to go (including the tumor) - things get squished and pressure slowly builds under the skull. The pressure starts affecting the brains ability to perform, and the symptoms you detect will be dependent on where the tumor takes root. Mine is near speech control and motor functions (as noted in the blog prologue). My speech is most noticeable of all the symptoms and continues to get worse. I don't take calls from anyone but family anymore because its just too confusing - my thoughts are still clear (hopefully this blog is proof of that) but the words struggle to get out.
Over time, if the tumor is not quickly treated, the cancer will start killing adjoining brain cells. Thats not so good, and thats why, even though I'm still feeling fine and am in no pain, this is treated so seriously. How wonderful is it that our health system takes such care?
If the damage to the brain is pressure-related, once the tumor is removed, the cells should recover on their own within days or weeks. If cells are killed, there can be permanent damage - although there appears to be plenty of evidence that over the subsequent 2 - 3 years, and depending on conditions, the brain can regrow and some function returns.
The surgeons seem to think my symptoms will be temporary rather than permanent (but there's obviously no guarantees). There's also the issue of damage caused by the excision procedure itself - which seems to carry the greater danger.
I'm going in now - wish me luck.
OMG. Thanks for extending the invitation to be a part of your Blog. It does make one think what is important in life and how we should be living it. I had breast cancer last year, but that pales into insignificance compared to your cancer. Hope all went well yesterday
ReplyDeleteWill be thinking of you
Julie
Don, I hope all went well yesterday. And I wish you a clear and swift jump over this hurdle. Your approach to this matter will definitely help you go through it successfully.
ReplyDeleteAnd, mate, if this is how you write when your brain cells are dancing, then as soon as you recover, you should seriously consider writing a book of sorts !!!
Roula and I are thinking about you.
And please pass our regards to Jacki - this must be difficult on her as well.
Keep those updates coming - I hope these become more and more positive by the day.
Hey Don,
ReplyDeleteHope you are recovering well... just thinking about you!
Your blog has been great to read, good on you for jotting your thoughts and sharing this difficult challenge. A super idea, especially whilst your speech is frustratingly stubborn!
Jac & Dad have been keeping us up-dated and we are keeping you in out thoughts and prayers.
Sending lots of love & a BIG hug,
Jackie
xxx
To everyone,
ReplyDeleteDon is still recovering from surgery. He is still very sleepy (yes even 3 days later!) but is able to eat a few things when he is awake. He falls asleep after a few spoonfuls so he now has a feeding tube to get enough nutritian into him. Anyone that knows Don knows that he likes his food and needs quite a lot to stay energised, so this is a good move.
The swelling from the surgery means that Don is not yet able to talk or verbalise. He right side is incredibly weak although he moved his toes and lifted his foot slightly last night .. so recovery is starting. Quite a relief!
Doctor said that it went well and 95% of tumor was removed. Surrounding brain area looks good acoording to MRI scans. We now just need to wait and see.
I now realise that recovery is likely to be slow. We were originally told 3 days but of course every person and surgury (and tumour!) is different. It looks like this may be a long road ahead but each day is bringing some little improvements and it is possible that he will improve significantly over the next week.
No visitors to the hospital yet please as he is still in high dependency unit.
Thanks for all your kind messages and support. Girls are fine as our friends are giving them an outstanding social life with sleepovers and playdates every day. They do not ask to many questions about daddy as they are so busy with fun so this makes it so much easier.
Love to all
Jacqui xx
Thanx for the update Jacqui. I hope you are going through this ordeal well. Please pass a big hello to Don and tell him that we are waiting for his writing !!!! Roula and I would have liked to have been in Sydney to help out in which ever way. Keep out of the heat (as we hear Sydney is experiencing seering temperatures) !!! Well wishes from Dubai.
DeleteLovely to hear from you dear old friend. The hospital air conditioning is nice & cool so there are some benefits in spending all my days in there.
DeleteI was able to take Don down to the hospital cafe today for a nice double shot coffee. Still no words but his personality (good & challenging parts!) are starting to shone through. Improvements every day.
Pass a hug on to roula and your kids.
Jacqui xx
Hi Don,
ReplyDeleteGood blog to know how you are feeling through all of this. Best of luck mate you are a fighter. Look forward to having some bourbons and coronas with you when you are out. Anna and I are thinking and praying for you.
Hey Don Juan
ReplyDeleteWhen in doubt there's nothing a long fat Cuban and old sinlge malt scotch can't fix [I mean the cigar and drink not female companions....then again]....
Our thoughts and best wishes are with you of course!
Cheers and beers
Al King
Hi Don, wishing you a speedy recovery and sending positive thoughts and wishes to you.
ReplyDeleteLooking forward to catching up when you are out and about again.
All the best and see you soon.
Michael, Carolyn, Ava an Ella xxxx
Hi Don
ReplyDeleteGlad to know you are clearly on the road to recovery! Apply that tenacious spirit you show when you discuss the merits of android over those unmentionable alternatives.
Wishing you a speedy recovery. Our thoughts are with you.
Andrew & Jacquie
Btw - the above msg was submitted by me on an HTC phone because Andrew could not submit it on his ever reliable Mac. Don rests his case.
DeleteJacqui (the other one)
Hi Don, Good to hear that you are through the surgery - I know that your dry wit and eternal optimism will come into play now as you head down the road of recovery - we are thinking of you everyday - take care my friend
ReplyDeleteWarmest Wishes.
Peter F from Melbourne
Hey Don,
ReplyDeleteMate, good to hear you you're less full of it - like me (except mine was in the guts!) - it feels great to get rid of it! And as people have pointed out, your writing is spot on, observations and all. Good luck, trust me on this - it ALL TAKES LONGER than you think. Don't rush it.
All my best wishes,
Vadim
Hey Don,
ReplyDeleteYou must be getting stronger because I hear the (vegetarian) soup we've been supplying is a hit. I'll sneak some smoked ham bits into the next batch which should be something for you to look forward to, speaking of which, I have a new bottle of yr favourite drink also some OX cigars in the humidor just waiting.
Hey hey, Jac was just at our place and said you could now have solid food.. WooHoo.. Meat Ball Here we come..
Hurry up and get the heck out of there. Wishing you a very speedy recovery.
Jerry and Suzanne
Donny, sacrificing Fuente OpusX is just not the same without you my friend please get out of there soon and help complete the ritual.
ReplyDeleteJerry
Don moved out of high dependency to the rehabilitation unit at POW last week. This means that he is medically stabilised and now must concentrate on building mobility, speech & independence. He will now receive intensive therapies everyday. He is working so hard but is likely to take quite a while. He is improving in little ways everyday but still has a long way to go. His voice has not yet returned but he is getting more control over his facial muscles. His right leg is getting stronger and can walk slowly with assistance. Right arm still not moving but right shoulder starting to move sometimes.
ReplyDeleteHe is eating really well and still gives great hugs with his left arm.
No visitors to the hospital yet please but thank you so much for your kind wishes, thoughts, food, help and healing vibes. It all makes a big difference.
Don will start receiving cancer treatment on 29th Jan. This is to mop up the cancer cells that may not have been removed by the surgery.
Jacqui xxx
Hi Jacqui,
DeleteWe are pleased to hear that Don is Improving.
Please give him our love and let him know we are thinking of him and sending positive vibes in his direction.
Best wishes.
Michael, Carolyn, Ava and Ella.
Jacqui
DeletePlease pass on thoughts and best wishes from all of Don's former colleagues at Macquarie. Only just heard the news and we all hope he continues the recovery and beats this.
Russell
Thanks Russell, nice to hear from you and definitely will pass on your message. He is working hard.
DeleteJacqui
Jacqui our thoughts are certainly with you, Don and the family, unfortunately we are too far away to offer any assistance other than fond wishes and love for a very special friend. I have been keeping up to date with the blog and hope the improvements remain steady even if they are slow. I have every faith that in typical Don style he will beat this. Wishing you lots of luck and love for the days, weeks and months ahead. My love to you all and a big hug for Don which I will entrust you to pass on. With lots of Love from cold, wet London Kathryn, Ian and Isobel xxxxx
DeleteHi Don & Jacqui, sorry I only heard about this today. I read the blogs and It seems really positive for a recovery soon. I expect Don to bounce back in time for the footy season and back the mighty Dragons with me for a small wager. I'd like to drop in and see Don when he can do that so please let me know. Please give him my best and you also look after yourself and the family. God bless, Terry Y
ReplyDeleteDear Don and Family
ReplyDeleteThe goodwill grapevine has also reached NZ. Sending you positive vibes and strength from across the ditch for a full recovery Don. Thinking of you all.
Paula R - ex Macq.
Hi Don and Jacqui
ReplyDeleteGlad to hear that he is through the surgery and is starting to recover.
My thoughts and best wisahes go out to you.
Keep Strong
Helena
All,
ReplyDeleteDon said his first words on the weekend! I heard from one of the patients that the nurse danced around the dining room in excitment. I desperately wanted to know what the word was but the patient couldn't remember, the nurse was on leave and Don couldn't tell me either. I finally found out yesterday ... "I can't cut it". Turns out that the nurse wanted to know why DOn wouldn't eat his toast. Not exactly the first words I would expect (I was hoping for something a little more profound) but thrilling all the same.
Don finally spoke to me tonight for the first time. He has been trying all day but just couldn't find his voice. The process is incredibly hard work for him. Finally, I got "I can watch whatever I like" referring to his desire to watch the TV in his room instead of the communal tv. Again, not the loving statement I was expecting, but I take these words with glee.
Don can now read these posts, so please send messages his way. He is still not ready for vistors but I am sure the time will come in the next few weeks.
Don's right arm still not moving but the doctor has assured us that this is normal as legs recover faster than arms. It is still a risk but not certain. He can now walk about 10m with a walking stick (and a little assistance) so his balance and right leg are getting stronger.
He started his radiotherapy and chemo treatment yesterday. So far so good.
Jacqui
I have just read your post Jacqui and am delighted to hear that Don is improving day by day. I am also glad he hasn't lost his sense of humour, ever practical food and tv first and the loving stuff can come later, frustrating for you but may he just didn't want to embarrass you into having to repeat his comments on this blog. Thinking of you all Lots of Love from a cold, wet and now windy London. A big kiss to that friend of mine. Take care of yourself too Jacqui. With Love Kathryn xxx
ReplyDeleteDon,
ReplyDeleteAll the best and get well ASAP as you email some excellent jokes! :-)
Your old neighbour from Kinsgrove
Don,
ReplyDeleteYou're such a romantic. Practice these words "I love you Jacqui". Surprise her, surprise us!!
Keep up the hard work, Get well, See you soon.
Love, Lesley
Words are starting to flow and I am finally understanding exactly what Don wants and how he is feeling without needing to deduce all the time. Such a relief! He still get exhausted quite easily as every tiny thing requires so much concentration. His talking is improving rapidly with focus now on articulation. He walked today for about 10m without any assistance.
ReplyDelete2nd week into treatment. No signs of side effects yet, thankfully.
Thanks to all for your supportive msgs. I have stuck these around his room for an additional motivational boost.
Jacqui x