Hello,

I share your sense of distress and frustration. My mum was diagnosed on the 3rd August ,mum was expecting to hear that she would need her gallbladder removed but was shocked to learn that her CT scan was highly unusual and due to the rarity of her condition  she would require extensive surgery/treatment in Basingstoke, England(We live in Scotland).Mum didn't have questions to ask as she was not expecting her CT results to show anything unusual. Mum was not informed of what to do next, how long to expect to wait to hear from anybody ,who to contact… The following day mum and dad used their initiative and popped by the local Maggie Centre-the Maggie staff were very welcoming and redirected my parents by phoning the local MacMillan Centre to let them know my parents would be on their way to make contact regarding some initial support and advice .On arrival at the MacMillan Centre, my parents introduced themselves but were shocked by the response they received; in an abrupt and rude tone they were asked-'Well then, what are you doing here?'(My parents offered a brief explanation regarding the shocking news and having to go to England for surgery)'Well, Why are you here then?'(To get some advice and information)'You can come back when you know when you are going for surgery, get in touch when you know more and we can give you help then’…Surely this should have been handled in a more sensitive manner, my parents felt like they were being treated like ’idiots’, they left feeling dejected, more isolated and upset. Mum does not want to contact MacMillan again.

On a more positive note,I have found help and support from a charitable organisation that deals with the specific  type of condition my mum has been diagnosed with(Psuedomyxoma Peritonei/PMP).The 'waiting' aspect has not changed but it is good to have contact with people that have direct experience of the disease.My mum managed to find more information regarding what is happening with her case by contacting her GP,the GP should have information sent to them in relation to hospital visits,scan results...My mum's GP knows nothing about PMP but was able to give my mum a letter showing that a refferal has been made,mum was shocked to discover that she needs to have more examinations prior to surgery;we are now thinking it could be several months before surgery.Think it would be advisable to contact the GP to see if he/she has received any information regarding your mum.Hope you receive some information/support soon.

Thanks so much for your reply. It helps to know that other people feel the same. There is something badly wrong with a system that gives you life shattering news followed by a confusing and scarey state of limbo as if you've just been dropped and forgotten. Mum's doctor is as in the dark as she is. In fact both he and my Mum were told only 6 months ago that it wasn't cancer. The diagnosis took a long time too. I hope you get some more news soon. All the very best to your family.