Hi Betty! 

Its so nice to hear from you. Thats exactly the problem. Youve hit the nail on the head. Everyone says remember the good times and focus on that, dont think about the bad bits but when the bad bits are so horrific its impossible to do that. I do laugh about my dad and we do use humour to cope sometimes but the biggest problem we have is the same as with you. It was just too awful to really accept. Mum cant accept it, I dont think she ever will because she says it was just too cruel. She is really bad at the moment she says she thinks she might have been numb or in shock or something because she is going through the non stop crying and feelings of massive guilt that she "let" it happen to him. She said that thinking about happy memories with him leads her straight into feeling distraught that he didnt deserve to be left to die like that. So just like you said the ending your husband had just overwhelms everything. I think thats completely normal. I cant see how you can experience something like that and accept it. Because to accept something you have to be at peace with it dont you? And I dont think my mum for instance will ever find peace where thats concerned. How can you? And how can she? 

I feel slightly different because I was the one in charge of running back and forth trying to get help and they wouldnt come. Unless I had physically grabbed a nurse and dragged her to dads room there was nothing I could do. I do feel guilty but its not as overwhelming as it was because I do know I couldnt do anything. I 100% blame the nurse but Im not angry. Im just baffled and it looks like she has falsified his notes too now. Shes made entries in retrospect and has added extra doses of pain killers that dad didnt have and werent listed in the response the health board sent me so Im waiting to see what happens now. In her general notes to the only thing she has written regarding dad that night is that he was "comfortable in bed". I smell a rat. But yes I am very upset about dad but seem to be in a different place to mum. 

I feel so sorry for your son too, back pain is awful and you cant see it so its a silent illness that causes so many problems. Ive got SPD from having the girls but the doctor has referred me to physiotherapy now. I do a lot of my own excercisses for it you can find them online but Im happy to see what they suggest. 

I havent made a fuss about my pain I thought two tablets twice a day was ok and seemed to manage it so I just stuck with it. Im trying disolvable paracetamol at the moment, my dad funny enough told me these were really good and I can feel theyre doing something. I think I just felt totally insulted and taken for an idiot. I wouldnt have minded if they had called me for a review or even changed them to something else but she went straight in at me and caught me totally by surprise. I just wasnt expecting that. Im going to wait until I go out for my shopping next week and then Ill pick them up, they just make you feel paranoid and like you shouldnt be having them and my reaction is to shut down and say fine. I told her in a very polite way to put them where the sun doesnt shine, I wasnt rude at all but I did say to her "You do realise that Im taking two doses per day dont you?" But she said yes!! We automatically assume that because theyre the professional and were not that they know everything but the problem is they would know a lot more if they bothered to listen to their patient but for whatever reason they dont seem to any more. Gone are the days when we had a "family"doctor. He would know you, your family, the family history, everything. Im not saying healthcare was better then but its almost impossible to even see the same doctor these days so theres no continuity. There are too many assumptions and people slip throught he net then. 

I dont know what Im doing today. I think Ill have a sort out of my bedroom. Its not too bad but getting s little bit messy. The bin men came and it looks like one of my recycling bags have split because theyve left rubbish over the pavement so Ive got to go and clear that up now.. I thought it was bank holiday today? I thought they had changed it from last Monday to today but like I said the bins have been collected. Im confused!!! It doesnt take much though!!! 

Im sending my love and hugs and please keep safe and take a deep breath. Its not going to go away but we can all support each other through it as best we can. 

XXXXXXXXXXXXXXXXXXXXXXXXXXXXX

Thank you MiGi. xx

Hi everyone,

Just wondering how everyone is getting along? Im also after some information if anyone knows who can help? Im having trouble with my advocate. My initial one left at xmas time, then it took until just before lockdown to get another one, but then she said she was having trouble writing my letter. So I wrote it for her and sent it to her at the beginning of lock down and she said she would send it along with a covering letter. She delayed and delayed, then a couple of weeks ago went on the sick. I was told that id be given a new advocate but they havent even replied to me. All they have said is that they cant just write a covering letter as they hadnt seen my file even though the covering letter is just a template they use and that I could send the letter myself. 

So Im wondering if I do send the letter myself, will it still be taken seriously? Or would I be better off waiting for an advocate as if its written on headed paper from an authoritative source it might carry more weight? I just feel like for some reason even the advocate people are trying to stall me on this and i dont know why! Theyre meant to be on my side but I have a sneaky feeling theyve given the concerns department the heads up about whats in my letter because they are definitely not helping me to get this letter sent at all. 

Has anyone got any ideas about this?

I hope everyone is well and keeping safe.

MiGi. XXXXXXXXXXXXXXXXX

Hi Migi. 

Nice to hear from you again, sorry I'm no good at the problem you have. Just thought id welcome you back. 

Hope this problem isn't to do with your other one. 

Hope you're keeping well and safe. 

Love Billy xxx 

Hi Migi. 

Bit chaos just now. 

Bren is on anti psychotic meds, been on them for over 14 years now we never knew till a friend asked what she was on she should never have been on them so had a word with her psychiatrist and weaning her off them, she was like a zombie couldn't move couldn't talk she's alot better now but still more tablets to stop, friends suggested suing, don't know yet.

I've had problems with my cancer count beginning of year it was 2.2 early this month it was 65 oncologist told me she's given me wrong meds, so she's sorting it out then I'm waiting three months to see if they work..

Hope you're OK and being safe. 

Love Billy xxx 

Hi Billy,

Its awful, so youve both been given the wrong medication then. I think i would raise a complaint. My friend died a few weeks ago, he had been given medication by the consultant but his GP didnt agree he needed it and stopped it. Its a shambles and even though its hard I would encourage everyone who this happens to to speak out and say. 

Im so sorry about this though, how are you feeling? Do you feel ok in yourself or are you feeling pretty rotten? 

MiGI XXXXXXXX

Hi Migi. 

I'm still feeling OK in myself, i think that's main thing and keeping positive. 

I've talked to bren about doing something about it but she's worried about any hassle or loads of questions she might get confused with. But she does worry about it being done to other people. I'll have to see if she changes her mind in the future.

Love Billy xxx 

Hi Billy,

It really helps to try to stay positive, Im glad you feel ok in yourself. Thats one good thing. 

I dont blame Bren, shes been through so much already, and shes right she probbaly would be confused with all of the questions etc... sometimes you just have to focus on getting through it because thats hard enough! Im thinking of you both, sending you lots of love. 

XXXXXXXXXXXXXXXXX

I am so sorry to hear how yor are being treated . It must be very frustrating for you. I remember 

twice I had the audacity to complain and the second time  the hospital actually called in the police because the nurse had put the tube into my husbands lung despite him telling her to stop and take him down to the emergency room at the hospital. Despite all of this and the statements the police had even from a chaplin who was another patient telling the he had overheard her saying they woud laugh at her, Nothing came of it . The tube was left like that until the next day. I was so sick and tired of trying to fight and feeling so useless and watching my husband slowly die at the same time. Only ranting so you will understand I see the frustration you are going through. Sending you my best wishes and love. Betty xxx