hi,i hope its ok for me to post here-i dont have cancer but both my mum and dad do (their both in their sevemnties,my dad has prostate cancer that hasnt changed for years).

i am 37 and have classic autism, learning disbaility, epilepsy and other disabilities.

my mum has had agresive bladder cancer for several years now.i remember she got diagnosed with it just as the first covid lockdown started and for a while she wasnt offered the treatment she needed. i was very scared she was going to die.it took a while before she was then told she needed to have radiotherapy plus chemotherapy together but it hadnt caught it in time so needed a lot of surgery.

i wasnt able to see my mum for a long time because my dad was extremely scared of both me passing on covid from my support staff and fellow residents here to himself as well as to my mum so he woudnt let me come down for a long time and it destroyed my mental health. when people were allowed to go visit their families if they were part of tehir support network,or even when they were allowed back in the house together, i had to sit in my wheelchair at one side of the gate for fifteen minutes a week if that,even in the rain,my mum thankfuly sat at the door step away from the rain but she wanted a hug so much she woud cry everytime and i cant tolerate hugging but i woud do anything she wanted to make her feel better. it was horrible seeing my dad drag her away from me and being unable to help support her.

sorry i dont know the names but the cancer had spread to the other parts that women have so she had to have a full hystorectomey and her bladder out so she has a stoma/bag now and a drip thing on her leg to take in discharge.

its her first time on any kind of mental healrtth help but she was recently put on a section 3? (i think,she was allowed to be kept in for up to 30 days on that section) under the mental health act to keep her in hospital as she was depressed and also believed the doctors were not helping so she wanted out,first they kept giving anti biotics that didnt help get rid of the discharge or the intense down below pain she got,then the doctor who did the operations said theres nothing wrong with you,you just need to get used to the pain and she says he told her she will always be like this.she told me she wanted to kill herself (thats when she was shaking with pain and no anti biotics so far have helped other than make her sick.

she can not eat much,she was on ensure plus for a long time.

my mum has been in agony with the hysto and the bladder removal since it happened-i cant remember when it happened but it was a while ago now,at least a couple of months. she has a drain in to remove discharge as she was getting tons of it and they even had prescribed her the same nappies i have because of the discharge,she says the pain is coming from 'up there'.

i did lots of reading about this and it said something like up to 50 per centr of people who have hystos have bad pelvic nerve pain or disruption for a while and im wondering if this is a nerve problem and i thought this for a long while as i have severe nerve damage and peripheral neuropathy from restraint so i know how nerves feel and work when they misbehave. it all so sounds like nerve spasm type pain.

 im just wondering if there are any other help or drugs on the NHS she can ask to be considered for? shes on low dose morphine- both the tablets,oramorph and co codamol (full strength) ,like is there a pesary version of morphine which can deliver it straight to the problem? ive googled and i dont understand a lot of the info ive found.

the reason im asking you all this is because i cant speak to my dad,i have speak around him to my mum. my dad is very traditional and shouts that you cant go asking the doctors to try something youve got to let the doctor make up his mind and he gets really angry with me and shouts me down even, with the cancer,shes spent a long time acepting whatever doctors say and never bringing anything up. ive been under neurologists my whole life and a community learning disability team pyschiatrist and they all actualy liked it if i asked if i read about something and asked if i coud try x,y or z  because of a drug i was on not working.

im sorry this is very very long,she is in her house and i am in mine,so we cant be together she asked me tonight if i woud speak to you all on her behalf as she cant use forums.or computers.hope this all makes sense i have also had my nightime meds which iss a lot.

thankyou very much.