May 2019
1 Kudo
Hi Katekat, 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 Felix
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March 2019
3 Kudos
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
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February 2019
Sorry, Also where is or was the the tumour situated in relation to the brain.? Does it effect his motor skills on one side of his body at all ? Does he have seizures at all?
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February 2019
1 Kudo
Hello Peshet, Sorry to read what you are going through. I am also a GBM sufferer and have beaten odds that specialist said I wouldn’t. I have posted some of my experiences on this site so please have a look at these and if you have any questions please ask. I am writing this as I sit in hospital after having my 3rd craniotomy done to remove a tumour. I’m going well and will keep fighting this as long as I can. One question I have is were they able to do a resection or is it inoperable? Colin
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February 2019
2 Kudos
Thanks Budgie, 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. Take care Colin
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February 2019
3 Kudos
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. take care Colin
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February 2019
1 Kudo
Thanks kj, 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 Colin
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February 2019
2 Kudos
Hello all, 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 take care Colin
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February 2019
Thank you Maria for your wishes, Im glad that I have been able to help you and if you have any questions please don’t hesitate to ask. I will still post stuff and check if you put anything up when I am in hospital. If I don’t I think I will go crazy in there with all the neuro tests they do on me and the lying around I expect to be in for 1-2 weeks depending on any complications. On my first removal I ended up with a DVT( blood clot) which kept me in for an extra week. I will be tackling this one again full on just like the others. Besides the headaches and the vertigo feeling I’m in good spirits. I also fainted and can’t remember it and hit my head on a cement floor. This was after my first removal and radiotherapy had finished. I had a CT scan done, it showed a lot of swelling around where the tumour had been resected. A week later I saw my General Physician she took one look at me and said I wasn’t right and booked me into hospital the next day. I had a MRI done and it showed there was a tumour there and the CT scan didn’t show it up because of the amount of swelling I had. Dont just rely on a CT scan as an MRI shows up more. My thoughts are also with you and your family. Colin
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February 2019
4 Kudos
Hello all,
I completed my 18th cycle of Chemotherapy and looks like it will be the last one for a little while. During the chemo week and the one after I experienced a lot of nausea and tiredness, I also had really bad headaches but I put this down to my teeth being more sensitive than normal ( I hadn’t been to the dentist for a while because who goes to the dentist when they tell you, you only have 14-20 months left to live.) I also started to get bad leg shakes and then the dizziness started where I couldn’t go 2 meters without feeling I was going to fall over. My wife rang my neurosurgeon and I had an emergency MRI done last Tuesday, The MRI showed a tumour in my temporal lobe. The good news is it’s operable and I go into hospital on the 21st of Feb for removal on the 22nd.
The other thing is radiotherapy could happen again as the first two tumours were in the parietal lobe and the radiotherapy was given to this specific area.
Im more confident going into this surgery because with the first one my neurosurgeon said I think you will come out paralysed on your left side and on the second he said that I definitely would be paralysed . I’m still walking even it it is with a limp and I fall over sometimes.
Take care all, keep smiling and I will do a blog after the op.
Colin 👊🏻
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