9 August - Feeling better

Has it really been more than a month since I last posted here? I know I said that "no news is good news" but several followers commented that they would like to continue receiving news about how I am getting on. So here's an update.

Today we made the return trip to Carlisle to keep an appointment with the oncologist. We learned nothing new. He asked how I was, I told him I was feeling fine considering, so we received a new appointment to see him in three months' time.

In truth, I'm feeling better than I have at any time since the treatment of my brain tumour began. In fact there are times when I completely forget that I'm ill at all, never mind have a terminal illness.

I'm not back to my original fitness though. I tire more easily than I did before and I don't think I could climb much of a hill, though I'm starting to venture further afield. I still get bouts of vertigo that make me sometimes nearly lose my balance when I am walking, and cause me to use both hands on both rails when coming down the stairs.

I have lost most of the excess weight I had gained whilst I was on steroids: I'm down to 91kg now and I had been over 100kg. That makes me feel better too. I still have the goal of getting down to 89 kilos which was what I was BT (before tumour.)

The one thing that disappointed us is that I was not given a date for a new MRI scan. The doctor said that as I'm not having headaches, vomiting or seizures and am feeling fine there is no reason to have a scan. But I'd prefer it if we could keep an eye on things. A glioblastoma multiforme grade 4 is considered incurable. So I believe that there is still some tumour left and expect that one day it will grow back again. I'd rather find out when this happens before I start experiencing headaches, fits and vomiting.

I don't really want to live with a time bomb in my head and have no idea what the fuse is set for.


  1. Good news Julian. Time to apply for your bus pass, HI.

  2. Glad you are feeling well and you are doing more. I have scans every 6 months but my oncology doc told me to ring if I had any concerns and he would fit me in for a scan as the last thing he wanted was for me to be worrying about the slightest ache and pain, and if your are like me I always think "it's back"! I banged my head last Tuesday on the shed, went to the doctors on Thursday due to headache and they sent me straight to local hospital for CAT scan, went straight thru A n E, had bloods taken and then for a scan, all done within 2 hours which I thought was brilliant. Scan results were clear no reoccurance and no bleeds (previous scan was 3 June).
    Hope this helps. Take Care

  3. Hi Julian just saw your post on the Elecraft Reflector after a long lay off. Glad to see you are returning to your old self!

    73 Dave

  4. Not sure of your particular flavor of religion, if any, but you are on my Sunday School class' prayer list. I'm sure you're being prayed for and thought about all over the world. Keep up the fight!


    David P.

  5. hi julian, jack here. I had lost a close friend to GBM in 2007. Right now i am working on a site to help brain cancer patients find treatment options. I compiled the treatments here
    i see that you know about novocure, besides that there's DC-VAC and ICT-107 vaccines trials that have had promising outcome. Hang in there and beat the odds.


  6. Julian,

    I am so glad you are feeling well. More power to your elbow.