My surgery today seems to have been a great success . 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 am in good spirits and
I will keep fighting this as long as I can
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.
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 to 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.
Glad to hear the surgery went well & that you’re in such good spirits. Let’s hope it’s the last one of those you have to go through.
Bring on the treatment now, hey. All the best.
Yeah love treatment, not lol
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 it 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.
So we keep moving forward and fighting it.
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.
Yeah I’m not doing to bad, today was a good day as I had a MRI that came back all clear. I have had some issues with the latest tumor being taken from the temporal lobe do at first it effected my processing and I couldn’t get things out of my head that weren’t even relevant. So that’s why I haven’t been on reading people’s posts. That side of it is good now what I do have is heightened sensory issues which is weird and freaky, my specialist are all over it. They tell me done people really struggle with it, I find it very fascinating especially smell and hearing. I wear ear plugs because everything is so loud and smells I pick up so strong some are good but some are terrible if you know what I mean lol
sorry if I waffled
Be part of this supportive community