I haven't been on the forum for a while, so thought I'd have a catch up and share my last few months. I hit my 12 month anniversary from diagnosis back in Novemer. Christmas is round the corner, and after last year with christmas not being so great, my boys are very excited, as myself and my wife.
I've had multiple seizures and been blue lighted a few times. My last major seizure was scary, I was so aware of what was happening and it scared the living daylights out of me. I had been for a walk and on return,making coffee, I started arm/hand legs perking and mouth too. With uncontrollable slobbering. Lasted about 2 hours.
I've managed to enjoy the last few months and have made some great memories with my wife. We got tickets for Jason manford and what a fulfilled night that was, a great comedian, great show.
Then we had a night with Peter Kay.
We use a local charity called Maggies and I go to a support group there and my wife has mingled with the wives and has got a little group together, where they all open up and have a good chat about life and how they manage with caring for us etc. Maggies is a safe place and I always feel good when leaving. They had a fundraising event called strictly maggies and asked if we would tell our story and be recordered and it be shown on the night.so after 2 hours of recording and having it condensed to 10 minutes, our story was shown at the event. We were guests of honour and had the pleasure of being seated with the celebrities who were judging the dancing. Just like strictly come dancing but not as serious ha.we sat with Rebecca ferguson from x factor, John Barnes, Jennifer Ellison, Peter Price a local scouse radio presenter, who hosted the show and a few more. 3 course meal was had and free drinks etc. Also meeting the chairman of this charity we have become apart of was an honour.
One of my latest scans was inconclusive and showed slight progression within the tumour, but nothing major. I had a 6 week break from chemotherapy before this. On having another meeting with my consultant I decided to continue with the break and had another 6 week break. Which actually ended up being 15 weeks. The usual things happened next, MRI AND RESULTS DAY. which was last Friday. I was expecting progression as I'd been off treatment for so long and know how aggressive and fast growing a glioblastoma can be. Anyway my scan Results came back and was STABLE. So another 8 weeks from treatment and to beable to enjoy christmas, we will get reviewed and go from there.
We went to a christmas carol evening at Maggies on Wednesday and unfortunately I had a seizure. Not one I'd experienced before, so if anybody has, please tell your story. Basically I've been suffering with noise and crowded place's, I start getting a perking of my right arm and hand. Which started not long after arrival. Then out of the blue standing behind my wife I fell forward into her losing my balance, then I was basically paralysed in all limbs. A wheel chair was needed and home and best to recover, felt the best option. I'm not the lightest at present either. So moving me was difficult. But every body done amazing. Has anybody experienced this ? I was aware of everything.
I'm on lamotrigine, keppra, Clobazam, and now Pregablin which is mostly for pain, but can work as an anti seizure medication also. I had overdone things the day of seizure and day before, so I think I'd over exerted.
What have people found there triggers to be?
Mine is anxiety and stress mostly. Ive started suffering with loud and crowded places, but trying my best to overcome it.
apologies for the full on SA. But its felt good to get things out there,and hopefully get some feed back and stories
Thanks for your time.
Chris
