Glioblastoma multiforme brain tumour

Glioblastoma multiforme (GBM) is a type of brain tumour. If you're suffering from glioblastoma multiforme, or know someone who is, join this support group.

Surgery 22/02/19

Colin33
Posted by

Hello all,

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

take care

Colin

Get as much as you can out of life, as you don’t know what is around the corner 

Bluees
Posted by

So glad to hear your news Colin, you are an inspiration. 

God bless

Esther 

Mother of a 23 year old son with GBM

Heathsad
Posted by

Hi Colin 

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 

Heather 

1983
Posted by

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

Colin33
Posted by

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

Get as much as you can out of life, as you don’t know what is around the corner 

Colin33
Posted by

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

Colin

Get as much as you can out of life, as you don’t know what is around the corner 

Rosvar63
Posted by

Hi colin

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.

 Sheila xx

Sheila.

Colin33
Posted by

Thanks Sheila,

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

Colin

Get as much as you can out of life, as you don’t know what is around the corner 

Colin33
Posted by

Hello all 

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.

take care 

Colin

Get as much as you can out of life, as you don’t know what is around the corner 

Colin33
Posted by

Hello all.

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

Get as much as you can out of life, as you don’t know what is around the corner 

Colin33
Posted by

Hello All, 

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.

Take care 

Colin

Get as much as you can out of life, as you don’t know what is around the corner