[ready2fightParticipant]

Its really nice to meet you all just wish it wasn't cause of MM! I will ring on Monday for a MM diary. I am just cross that we haven't been informed in 2009 that there was Bence Jones protein in his urine, at least we would ve expected all the last 2 week's drama with his kidneys. He was so poorly he didn't know what was happening to him, he was transfered from one hospital to another to get a catheter put in his neck to start dialysis. That was done with a local anaesthetic but he was so confused that he thought he was in a car crash all he wanted was to see me and reassure him, unfortunatly he had to wait 7 hours and by then he was traumatised. Don't get me wrong we have got a wonderful team of doctors, consultants and nurses but we feel really let down, it also wasn't the same hospital who discovered the BJ protein 3 years ago, we switched hospitals last year due to geographical reasons and the roads were icy the night he has been taken into hospital. Just dread to think if we went back to our original hospital if he would ve been told then?! Now I just want to concentrate on him and his health, I drive all the medical staaf nuts I am over protective and are in for the kill if I find anything not as it should be.

Thank you for your response Jean, the advice means alot to me, it helps just to talk! Hope you and your husband are well.
lots of love
Deirdre

[ready2fightParticipant]

Hi Eve,
Thank you for replying :-). According to the consultant at the hospital in Swansea, Cyril has had Bence Jones protein in his urine since 2009 (we were only told last Dec 2011) about it, Somewhere we've haven't been told he had MM in 2009 and he has been left for 2 years without monitoring or treatment :-S He only had Zometa every month (since January 2012) and our GP called it chemo according to the haemothologist its not chemo he will be on a chemo soon thats why I said in my post's subject Confused! I really do need answers things are not straight forward as it seems it has been!

Deirdre
xxx

[ready2fightParticipant]

so glad i read your post, I m similar situation, my daughter Tracey is 16, got the pets, business and most importantly Cyril my husband to care for. My parents live sin South Africa and the times I ve tried to speak to my mum we both just got so emotional so know I do the pretend I am ok all the time. But deep inside I am so scared…. A few weeks ago I was still living in this ideal world of thinking we ve got years but Cyril deteriorated these last 2 weeks so quickly from being OK and getting Zometa monthly to kidney failure was a huge shock. Cyril was ALWAYS the strong one and now to see him cry is to much for me! Though I must admit since he has been diagnosed last xmas i still havent cried just wanna be strong for him and Tracey and I am to scared to open the floodgates wot if i break down??? what if i can't stop crying?? Hope you having a better day today.
take care
Deirdre

[Author]

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