Congratulations I gained 10 kg in this past month.
Unbelievable. I don’t think anyone can imagine what it feels like to suddenly lag so much extra weight along. I am so out of breath and have given up exercising for now. I saw the oncologist today and he’s happy with my progress. All my symptoms are cortisone related and the weight will melt away over the next months, as the cortisone gets reduced.
I will be re-scanned December/January to assess the effect of radiation. Even though my radiation is over and done with, it remains at work on the brain for a few month after.
So unless anything untoward happens, I will repost an update after my next scan. But for now I’m done with doctors and treatments for a while.
What gets me through is the memory of my sister chasing me through Boschenmeer on a very brisk walk for 30 minutes and I handled it well and looked just like any other normal human being! That was on my pre-cortisone days. I’ll get there again.
I went to see the oncologist today and was surprised to hear “your radiation starts now” whoopee – miscommunication. I was hauled off to the radiation room. I will receive 5 radiation sessions, one a day, for a week until Monday 24th. Radiation is no big deal, it’s not painful at all, best to just relax and get in an extra nap while you’re there. (I have no idea what they do with people suffering from claustrophobia.) They did some X-rays first to make sure the scan is 100% in the correct position and the whole process took about 30 minutes all in all. I will be scanned again after 2-3 months to see what the effect has been from the radiation.
I’m so glad that I can start weaning off the cortisone from Monday 24th but it will be a
long process over 5 weeks at which point I need to contact the doctor to report on my progress. If I’m okay there will be a further reduction period. Making progress. I’m so bloated from water retention, that’s the worst side effect – I have a double chin, my feet and fingers hurt… long term cortisone is not easy.
At this point the tumour is still there, it has not reduced. What happened originally was that the tumour was ‘leaching’, known as a ‘brain oedema’, and the cortisone has helped to dry it up which is why I’ve been feeling better. When I heard that the tumour is “as big as an eye” – I said I would have preferred a pea! I never asked what part of the eye….
I may have patchy hair on the left hand side where I was radiated. Disappointing as my hair was coming along nicely for summer but a small thing, hardly worth complaining in the bigger scheme of things.
Here are some photos of my new hair (my head was shaven.) It’s still a bit batchy and I’m not sure of the colour or the effect of the scheduled radiation so I’m going to wait and see first before doing anything for summer. But all I know is that any form of head covering is extremely hot even now and it’s not even summer!
I went to my Integrated Health Specialist on Monday 10 October and guess what – I gained 7 kg in a month from the cortisone! He said not to worry about it too much because I’m retaining a lot of fluid from the cortisone. I feel like an Oros man – swollen face, stomach, fingers and legs. There are other symptoms as well like redness in the face. I guess I’ll have to continue with the cortisone until we know the effect of the radiation (which is still to come.)
My 11 October started off with an MRI scan at 08h00.
The MRI scan was incredible noisy. I usually imagine myself on the beach but this was impossible. It reminded me of sitting on the side of the road at Dimitri’s in RSE, waiting for my car to be fixed! Clanging, grinding and banging. That was the only image that crossed my mind.
I was then taken to have a mask made. They shaped hot melted plastic around my face which cooled into a hard, unbending mask. It was wonderful because it felt just like a facial, except the smell of chocolate was absent!
Thereafter, time for the CT scan, where I had dye injected into my arm. No big deal but I have to drink about 2 litres of water today to flush out all the chemicals.
And by 9.30am I was done. The one thing that kept me going was my reward – was I going to order a cappucino or chocochino!
I’m meeting the oncologist in a week’s time to hear about next steps.
I went on a high cortisone dose at my hospital visit on 7 September 2016, whereafter it was gradually reduced, but on 30 September my brain shutting down again, whereafter the dosage was increased. I am currently (6 October) still on the increased dosage and functioning well. I am scheduled for radiation and not sure at what stage I’ll be coming off the cortisone. The bloatedness is already evident in my face and stomach! Last time it took about 2 months for my body return to normal. My diet can’t cope well with the cortisone cravings….it makes me obsessive compulsive, it’s terrible. I’ll tackle my summer body when the cortisone is at an end.
On Monday 10 October I need to go for a port flush (that horrible plug in my chest into which they stick a needle to flush it out and to clean it open). Future chemo will pump into my body through the port that’s why it should be maintained.
In the afternoon I’ll be at N1 City for 2.5 hours where I’ll be getting a mask for the head (to keep the head still & in place so that the radiation is always done in the correct position – the head gets strapped in), a MRT scan and a CT scan.
On 18 October (a week later) I need to meet the oncologist, who will inform me of his decision, based on the above scans. I may need 5 treatments of radiation.
In between (on other days) I need to find time to have my hemoglobin checked with a blood test and another blood test to check my blood level (whether the blood is too thick or too thin and gets chemically adjusted).
I’ll add more photos and results when I know more. Thank you for your thoughts and good wishes.