Sorry - looks as if my pm didn’t get through. How do I do it please?
Liz.
Thanks for trying that Liz. We will wait and see if anyone answers your question. We just want some hope at the moment. We aren’t asking for the moon or a miracle but just a few years. A miracle would be wonderful of course … the thought of not having to watch her go through this or being so afraid and uncertain of the future and knowing that I would die before her would be a gift from the Gods … but at the moment I just ask for time … a few years… surely I can’t lose my gorgeous girl just yet? there must be some hope out there, something we can do.
Love Sue x
Hi liz
You need to type the username of the person you are sending a private message to into the ‘Send a private message to (optional)’ box then type your message in the ‘Enter your comments’ box as usual.
Hope this helps.
Lucy
Hi
So sorry to hear about your daughter. I don’t know if this will help but a friend was diagnosis with brain mets 15 months after initial diagnosis. She had whole brain rads and further chemo this time Taxotare, had had FEC. That was back in July last year. She has just been re scaned and there is no sign of mets in the brain just dead tissue which is normal. She is feeling well and they do not intend to scan for another 6 months. Hope that helps and will be thinking of you both.
Hi
I just wanted to give you my story - my mum had brain mets and was operated on by Dr Grundy at Southampton last April. He was a lovely caring man and apparently one of the best in his field! He made my mum feel completely at ease and the operation went really well, they removed all of it. He said to my mum once they are operated on it is very unlikely that they will come back for some time and he expected my mum to live a few more years. She then had whole brain radiotherapy. She died last August but that was to do with the lung mets, he had had a recent brain scan and everything was still clear. Just wanted to tell your our experience to show there are others out there who understand. Love Joanne x x x
Thank you Geraldine and Joanne … really helps to hear stories like that. Love Sue xx
Moderator Lucy…
This is the 3rd time I have tried to send a pm to Sue - it is still appearing on the screen. Can you send this to her for me please, as I don’t know what else to do. I did what you advised.
Liz.
Many thanks Louise - sorry to have been a pain.
Liz.
Thank you so much for all that Liz and taking the time to do this for us when you are not well yourself. I will certainly look into that site. I find I can’t just sit and do nothing at all. I must find out just what is available and to try to find some positive stories … we need something to cling onto. Lisa is being the strongest at the moment and keeps telling us that it will be alright! Having brain mets is bad but having IBC which we all know is very aggressive is the pits. The irony of it all is that so far cancer is not showing up anywhere else in her body … after mastectomy etc all gone so we were so hopeful until she started getting these headaches after rads. I asked why they didn’t do CT to the brain when they do body CT … his answer was simply that they don’t do it as a matter of course until there is a reason. All down to money I suppose! Even when she started getting the headaches 3 weeks ago they all said it was possibly after effects of the rads and it wasn’t until she started being sick that they did a brain scan. I feel that 3 wasted weeks , well 4 now, is a long time when you have an aggressive cancer. We are going to ring again tomorrow and badger them relentlessly!
Will keep in touch and let you know how we get on.
Love Sue xx
By the way I am not really sure how the PMs work either. Sue x
Hi Sue
So sorry to hear about yur daughter’s diagnosis. Hope you are taking strength from the stories here.
Please don’t waste energy thinking about '‘what ifs’ with a slightly earlier diagnosis. First of all an earlier scan might not have shown the metasteses and secondly a slightly earlier diagnosis is not known to have any bearing on prognosis.
What’s done is done…I hope your daughter can get her treatment as soon as possible…waiting is always hard.
veyr best wishes
Jane
Thank you both … you are right of course Jane … Sue x