I’m so sorry to hear your news Paula. I posted the Brain Diary posts a forum member, Kitkat, made a while ago on another thread started by Hannah today. I will post them again here so if you want to you can read Kitkat’s experience of WBR.
Kitkat sadly passed away many months later from other complications due to the disease and not in any way related to her brain mets. She had VERY succesful WBR results.
Wishing you the best results possible.
Lots of Love, Belinda…xx
Brain Diary Hi All
I’ve decided to impose on you all my lovely journey through brain mets as there didn’t seem anyone out there who’s done it recently/firsthand. Don’t want to scare, rather to reassure, so if you don’t want to read, stop now!
As you may know, saw the doc last week who confirmed brain mets. Hospital called Tues ( week later) for me to go in Thurs for mask and simulator for whole brain radiotherapy. Have to say, VERY impressed at speed of NHS here, also slightly scared that they felt it necessary to do it so quickly!
Mask was fine! I was worried I’d feel claustrophobic, but it was a bit like having a a warm string vest put over my face! It was only on for about 5 mins and then cooled down. Then they clip you down on the table, but the radio is only about 6 mins total, so I can do that! Easy! No tattoos as they draw on the mask!
She also showed me the MRI films and the mets were very small white spots. About 6 or 7 dotted around, but lower in the brain than I had thought. Not many in the top bit, and one a bit alarmingly near my optic nerve, but she reckons this radio will stop it inflicting any damage.
The radio will hopefully reduce them but, as usual, won’t get rid of them. Whether they recur is apparently dependent on what happens elsewhere in me, but as liver and bones seems stable for now, fingers crossed.
I start next Tues, 10 sessions over 2 weeks. Hair will go patchy and thin again, but it may not come back this time. Still, rather be here and bald, than hairy and not!
Feel so much better now its all going ahead and I can deal with it! Been working out driving rota and babysitting rota today.
Driving by the way, is off for the ‘forseeable’. basically if I ever want to drive again, the doc would need to fill in a form for the DVLA. Just going to have to get used to it, and use taxis and buses etc.
Was a bit concerned that this would in some way change me, my personality, but just going to have to try it and see. Surgery is not an option cos there are just too many.
Steroids seem to be stopping headaches and clumsiness, still a bit woozy but think thats the steroids themselves! Plus, they give me thrush so mouth back to cardboard and weight dropping off again. Mind you, I’ve got plenty to lose so no worries there!
Anyway, think thats all for now, let you know how its going next week.
Love Kitkat
Brain Diary Part 2 Hi Everyone,
I’m back! 4 whole brain radiotherapy treatments done, 6 to go and not feeling too bad!
It’s a very strange experience when you actually have the radiotherapy. When I’ve had it before on my boob and back, there is no smell, no lights just buzzes. This time there is a definite smell, kind of burning but not really, they call it ionising apparently, but my friend whose been driving me noticed it in the car! It also flashes a kind of blue light at the back of my eyes which has baffled them as its not supposed to! I think it must just be zapping a particular nerve in there somewhere! Its so quick though that I don’t have time to worry. I have to say that by the end of it, I’ll be glad to finish!
I’m feeling more weary today, and had a bit of a funny ear last night which is all down to swelling in my poor head. I do feel a bit like a bit of bacon! Hair still there, but scalp definitely feeling tingly kind of pre hair fall out feeling for those who’ve had chemo.
Anyway, will have a good sleepy weekend. My poor Mum has been away on holiday since all this kicked off and knows nothing about it, because I so wanted her to have a good holiday, so thats all about to hit the fan this evening. I hope she’ll forgive me.
Hope everyones doing ok
speak to you when I can
lots of love Kitkat
2nd part of Kitkat’s brain diaries…
A new bike for Christmas Hi all
wanted to tell you all about my early xmas pressie as I’m so excited and proud of myself!
I got a big shiny purple bike! With lots of comfortable padding and good suspension for my poor ole bones.
Been out with hubby and son and did 2 miles and felt really brilliant and alive! Fantastic, and its exercise and a bit of independence as I can’t drive.
Would definitely recommend it despite my mothers worries about my bone mets!
Loe Kitkat (exhausted but happy)
More Good News from me too! I wanted to share my good news too with everyone as sometimes we forget there is hope!
I’ve recently had CT scans on brain, abdomen, neck, pelvis and there is NO EVIDENCE OF METS !!! For those who don’t know I had liver mets and multiple brain mets (see profile) and am so overjoyed I can’t quite take it in. My onc said he was pleasantly surpised as he had expected there to be some activity!!!
I do still need to have bone scan as he thinks any cancer activity here might be the cause of my recent anaemia but I can deal with bone mets! Its not the bone mets that see you off is it.
Feel like the huge cloud I’ve carried around has been lifted, for a little while anyway.
So don’t give up, hope my news cheers you as much as it has me!
With love
Kitkat