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My surgery today seems to have been a great success today. My neurosurgeon was able to resect the whole tumour but there was a lot of edema around the tumour.
i am writing this why lying in CCU ( critical care unit). I am bored lol
The surgery was for a tumour in the tight temporal lobe and I seem to have no side effects at this stage My neurosurgeon has the hands of god.The first two craniotomies he said I would be paralysed but I still walk with a limp
The week will consist of scans and Neuro tests all week yah..Neuro tests are the worst in CCU as they do them every hour lol. Not much sleep tonight.
Pain is tolerable at the moment with the help of drugs but do have a headache.
befote surgery yesterday my anethesist explained my dizziness perfectly .It is aura dizziness, where my whole head goes fuzzy it is normally the first sign of a partial seizure but because I am on such a high dose of ant seizure medication it doesn’t then form into my muscles jerking but feeling like I am going to fall over.
I will keep fighting this as long as I can
Get as much as you can out of life, as you don’t know what is around the corner
So glad to hear your news Colin, you are an inspiration.
Mother of a 24 year old son with GBM
I am so so glad to hear your news . So wonderful that you are fighting this so well . Michael had 2 craniotomies at RPA and the treatment at the Chris Obrien Lifehouse in Sydney .
This disease is so foul and my son Rory ( now 12 ) and I have been so traumatised by it . And tge gruef never lets up .What you wrote the other day about writing cards presents etc ...you are wonderful Colin ..I wish we could have had this but Michael focused on treatment and we never discussed anything . Your comments on this forum will give a lot of hope and ideas to many many people living with this .
Thank you and so happy your op went so well
This is great news. My mum had surgery today (after diagnosis only a couple of weeks ago - so all still in shock) and her op also seems to have gone well. Will know more tomorrow.
Wish you all the best mate. I think it’s amazing you can be online and posting so soon after such a big operation, good for you and keep on fighting
Thanks mate and I am glad your mums op seems to have gone well as well.
This being my third craniotomy I know what I’m in for and up against, I wouldn’t have been able to do it after the first craniotomy and diagnosis though.
writing it down in this forum is good for me as I get my thought and ideas out of my head.
take care, good luck too your mum, my thoughts are with you and your family
Thank you Heather, for your kind words,
The pain with which my family is going to have to deal with when it really turns nasty and what they will have to deal with after is the hardest thing of all for me.
I can deal with anything that happens to me.
Mine is done in Memorial hospital in Adelaide and my neurosurgeon here is the best I can get in this city and I would not go anywhere else, he is very good and is charge of a lot of the neuro divisions here
Everything is going well, I feel good and the Neurosurgeon is really happy with what he can see from the MRI scan done after surgery. Headaches now are just from surgery and not pressure headaches from the tumour and I’m not getting aura dizziness when I stand up and then walk.
The next phase coming out of hospital is going to be interesting, with what they will do with treatment as they are talking radiotherapy again because the first lot of radiotherapy was specifically targeted to where that tumour was and this one was in a different lobe.
take care Heather
cant believe you are commenting on here a day after surgery! That alone is amazing Colin......well done! You are such an inspiration
i wish my husband would share his thoughts on here.....but I guess it’s not for everyone.
Good luck with further treatment Colin. You are an inspiration....I tell Anthony about you and it does spur him on. He’s 16 months on, having a 2 week break from PCV (6th cycle), due to low platelet but still getting out. So brave and strong
thanks for sharing.
Im now out of CCU and in a room on my own in a ward.
The sleep is now getting better. Pain is being managed well and there is a bit of swelling on my face and that’s just from the skull being reconstructed from being cut open
I am feeling good with a question mark cut on my right side of my head.
Going forward from here I will discuss with my neurosurgeon of what we can do and he will organise it all from there regarding radiotherapy and Chemotherapy.
I will keep fighting it and my neurosurgeon will keep taking it out as long as it won’t affect my quality of life to much and we discuss the balance between quality and quantity with the surgeries.
No sharing isn’t for everyone and I really wasn’t one to share before, but it has changed me where I was diplomatic before I am now very blunt lol
It is harder for me to do it in person mainly when that person doesn’t know anything about it and you have to explain it all again.
I am so glad to hear my posts spur Anthony on and yes anyone going through this is brave and strong, that means you as well
Take care and tell Anthony I said to keep fighting
My recovery is still going well I feel good in myself. I am in a ward on my own, bandage came off today and I was able to wash my hair. It’s weird how just the feeling of washing your hair can make you feel good. It’s a lot better than having the catheter taken out lol . Sorry if I just went too far, I am bored.
When I look in the mirror the cut looks like a question mark on my right temple it’s just missing the dot so I have been calling myself the Riddler. Might have to go and find Batman.
I hope to be out by the weekend but they will get me checked for blood clots before I leave as I did get one in the calf when I had my first resection done.
Then it’s on too how else I can fight it such as radiotherapy and chemotherapy, the wheels are in motion for this to happen but just need the wound to heal first.
I had a meeting with my radio oncologist today and that was good and positive. My mask fitting has been booked as well as a treatment start date for radiotherapy. Been through this all before so I know what I’m in for.
After that it’s then working with the chemo oncologist to see what chemo drug we look at using. Options with chemo are to stay on Temozolomide as the tumour didn’t comeback in the same spot as before or to go on Carboplatin and see how that goes. Either way there are options and if comes back we take it out again.
Jeez when I got back to my hospital room my bloody head hurt though. My wife drove me to the appointment which wasn’t far away from the hospital so I will blame her driving Head is all good now though after taking some medication for it.
So we keep moving forward and fighting it.
Take care Colin
I have been home now for over a week and things are starting to get back to normal,
Going forward from here I start radiotherapy in a couple of weeks and this can be done again because the first tumour was in a different lobe and the radiotherapy was just targeted to that area. After radiotherapy finishes I will then start chemotherapy, which looks like it will be Carboplatin.
A couple of side effects so far that I feel like I have/do have are taste(my tongue tingles a lot) and thought processing( takes longer to get somethings out of your head when before it didn’t) but my short term memory seems to be better. Weird lol
Im feeling good and still fighting it.
I am doing well in myself now, but this is what has been happening since I last posted on the 11th of March.
The thought processing side effect,I really struggled with. I would watch or read something that would bother or annoy me and I just couldn’t process it and get it out of my head, it would be stuck there for a couple of days. This is now a lot better but I stay away from reading or watching about things that I would find hard to process. So sorry I don’t read other people’s stories on this forum at the moment and this post is just an update for anyone interested at where I am at.
i have just completed my second week of radiotherapy in the first week I didn’t pick up any side effects but that changed at the start of the second week. I had a aggressive outburst and I was hearing music that wasn’t there. My wife and general physician booked me in for an emergency MRI in a couple of days time because of it. Other side effects where my heightened sense of smell and hearing. Everything is very loud and I have to tell people to be quieter and in a room of people my head will just start pounding with a headache. The sense of smell is ridiculous, I can smell the soap of a person so strong that it actually makes me nauseous and don’t even get me started on what it smells like when someone lets one rip lol. Weird I know but it’s only been this week I have noticed it.
I argued about having the MRI done to start with because I knew there would be nothing there as it wasn’t having the same symptoms before the surgery but I then went with it because I was interested in the amount of swelling radiotherapy was causing. The MRI came back all clear in both spots where I have had debulking done and the swelling was there but nothing concerning and the scar tissue from the temporal lobe was healing well.
One other weird thing going on is I am losing weight when I reallye shouldn’t be. I came out of hospital 4 kg lighter than I went in and I am still losing weight now even though I am on a high dose of steroids and eating crap. I can’t eat as big of meals as before but for the amount of calorie intake I have compared to what I would burn off I shouldn’t be losing weight. Last time I put on 20 kg because of my lack of movement, steroid intake and eating habits.
Sorry if I waffled on but I am in a good head space and still fighting it.
Oh and I forgot to say and this is another weird thing happening and once again it was only this week of radiotherapy.Here goes and don’t get freaked out lol
when I am getting my face mask put on and strapped to the table I can smell the breath and perfume of every girl it’s ridiculous and I can identify them by it. The machine starts up and I can feel a warm sensation in the targeted area, a smell then comes into my mask and it is relevant to a laser being used. This goes away once the machine stops. Later in the day if I start to sweat at all I get the same smell. So the area has heated up again. I put moisturizer on it I can then smell that for the rest of the day, and mainly when I go outside and the wind blows.
you mention you struggle with thought process. Anthony had this at the beginning, after his first craniotomy and a speech therapist helped. When the tumour returned, the treatment switched to PCV. He kept forgetting what he wanted to say. He also hated noise and rooms full of people. Still does now. He saw another speech therapist and she was brilliant. At the time he was avoiding meeting friends or family, as he was struggling with communication, but she explained that his brain was being attacked, and it would only concentrate on immediate concerns, ie, walking, eating, drinking. Communication was the last thing on its list. Therefore, we needed to limit the number of people that visited. A room full of people was no longer agreeable. One to one conversations are the way to go. It’s been tough but he has good days and bad, the worst one being limiting our granddaughters visits, but he’s improving. We enjoyed her sleepover last night, though I suspect it was a little too much (she is 5 and very chatty).
keep fighting Colin! You’re doing brilliantly.
i asked Anthony if he noticed any change in his sense of smell, but he can’t remember any. One unusual thing he does do is his left arm tremors when he yawns. I asked the CSN and she said it’s just An Anthonyism......
take care, Sheila xx
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