My friend had whole brain radio therapy back in July. She was told there would be side affects, bout 2-3 weeks after. At the moment she is in a terrible way. She has ballooned, due to the steroids and is in a lot of pain, sleeps most of the time. She has been seen by a consultant from the local hospice organisation, who put her back on the steroids and told her that the she should have been warned that the side affects were more like 5-6 weeks after.
Has anyone been in this situation? She is very low at the moment and cannot see a light at the end of the tunnel and I am at a loss of how to help. The docs cannot seem to give her an answer of how much longer this will last, which really doesn’t help. She has 2 small kids and obviously this is having a knock on effect on the whole family.
Is there anyone out there who has been through whole brain radio or has knowledge of it? I really would like to be able to give her something positive, as I said earlier she is very low and is beginning to question whether it has been worth it.
Thanks
Karen
Hi Karen,
Sorry to hear about your friend, I finished my WBR 2 days before christmas. I didnt think it was too bad while I was going through it and like your friend didnt realise it hit afterwards. I was so very tired and put on about 10 kilos in 5 days! My scalp was so irritated and drove me mad and the hair loss thing is all hard to go through again. (cortisone cream helped a bit)
Its all such a shock and she will be going through the roller coaster ride again. Having small kids is hard. speaking of small kids I have to go and put mine to bed. I will finish this later.
Love Suzy
Hi,
Sorry to hear how your friend is feeling but I was also dx with brain mets in july and have found it is now some 6 weeks later that I am tired and feeling very sick. Hope it stops soon.
Love treakle xxx
Back again, sorry about that!
I often think that it must be really hard for friends and family looking on. I can really relate to your friend, when you are tired and feel sick its hard to sound positive to those around you. My consultants were never very encouraging either in terms of prognosis. Having good friends who hang in there and dont forget about you is really such a blessing. The biggest help you could be right now is probably with her kids,entertaining them or picking them up from school is great. I had one friend who made my daughters lunch box for 2 months! That was so good. (we dont have school dinners in Australia) Helping with housework is also great.
She may feel like she has so much to do and not enough time to do it. i.e. getting your house in order type feelings,
I am out to prove my doctors wrong! (when Im having a good day) Your friend will start to feel better as time goes by. Take care. Dont know if this is much help, there are quite a few of us with brain mets who are on this site.
love Suzy
Thanks Suzy and Treakle for your replies,
My friend has gone in to the local hospice today, she just cannot find any peace! Everything, everywhere hurts and it was thought best to take her in to sort ot what medication works best etc. Had the kids for a couple of hours and have been put in charge of school uniform! Spoke to hubby (hers not mine!) and he too is worried that it may not just be the effects of the radio, but has been reassured that if there is anything else they will find it! However, a nurse did say today that it can take up to 12 weeks, so hopefully once they have sorted out her meds, she will begin to improve. Am praying very hard at the moment, which for someone who doesn’t really believe is quite a feat!
I know she hasn’t quite got her house in order, I know there are things she hasn’t done and wants to do and I suspect you are right Suzy, I expect she is worried about the things she hasn’t done, but I know myself and others will try to help where we can. The kids seem to be coping fine, but I think it is difficult to tell and sometimes it is easy to blame bad behaviour etc on what is going on when in reality they are just being kids.
Am hoping that both of you and my friend prove the doctors wrong. Its reassuring to know that there are a few here with brain mets, as you said Suzy the doctors tend to err on the bad prognosis and we’re left with little short of a miracle!
Hows the weather down in Oz, I have a friend in Melbourne, left UK last year. Her kids think the are in heaven!
Thanks again ladies for your support, and my best wishes to you both.
Love Karen