Dear Carol.,rather angry day, no RT instead CT scan and tattoo where to put RT next Friday, also got oncologist appointment face to face Friday over 4 hours apart so phone up and got time changed to nearer together. 

Im doing Brenda meals before i go. 

Neighbour who came other month Brenda doesn't want as all she did was talk about herself and Brenda was fed up with her. 

Hope your enjoy being chatted up and you certainly have got it, whatever it is..

Love Billy xxxx 

Dear Billy I'm so sorry that this is all going wrong again, it seems to be another mess where no one department knows what the other is doing.  Surely in this day and age if you are being treated they should be able to log on and arrange appointments that are close to each other.  I wish I was in charge of things I would certainly have my say and vociferously so they couldn't hide behind their computer!!  Patient care rang me yesterday to narrow down the form they have to fill in to have my complaint re visited, the only point listed was bed sores, I was so mad as I'd written about them, his bloody ears, the filthy state etc of my husband and that's all he wanted to put down on the form, so I fired off another email and said NO.  I am not going to be ignored or railroaded into anything that makes it easier for them, Norman died before his time, yes he didn't have long but we could have kept him safe and cared for at home not left rotting and neglected in a side ward.  So let's see where that gets me, they will rue the day they met me and talked to me like I was just a fly they wanted to bat away.  Dave came over with a birthday card this morning and I offered him coffee, Anne had gone out so he said yes, I gave it to him and he put it on my brand new dining room table!  He didn't half get a flea in his ear, I've got loads of worktops and he plonks it on my one week old table, he was very apologetic!!  Lisa has just rang, Harry has not been well but has made a miraculous recovery so he can go to the fireworks night, me I'm glad I'm not going anywhere, it's damp and cold.  Poor Brenda, it's awful when people do that, we had friends who moaned so much about their health that if we saw them coming we ran the other way, so I understand her opinion about it.  Had my covid jab yesterday and had a horrible night, I was so cold that even with a sheet, two blankets and a duvet I was frozen, I read the information this morning and that's one of the side effects.  I said to Lisa, I love these jabs that are supposed to help keep you healthy and you end up with a sore swollen arm, chills, headache and a stiff neck!!  Still it's better than Covid as I well know.  So let me know how it all goes Billy, take care, Carol x 

Hi Carol and Billy,

Firstly I just want to say I'm really sorry your cancer has started plaguing you again, Billy, I sympathise with you over tha back pain. That is something I am familiar with. I do hope the RT helps.  I'm glad you managed to get the appointments moved closer together, these things seem minor to the systems that produce them, but can have a horrendous effect on your day.  
Carol, I honestly believe that Norman would only have been better off at home because he had you there, to look after him.  If he hadn't he would have been no better off at home than he was in the hospital.  My friend and neighbour is supposed to be having four visits a day from "carers". I use the inverted commas because care is the last thing they are providing for him.  He is being put to bed at anything from 7pm then not being got up in the morning until 11am or later.  At least in hospital he was turned every few hours so his skin didn't break down.  He isn't being washed, or having his teeth cleaned. He has very little dexterity but his toothbrush and toothpaste are just left on his trolley for him to use, which is impossible for him. I could go on for hours about how he is not being cared for.  He is so scared of rocking the boat, though that he thanks them profusely for the little they do for him, and he won't let me do things for him, although I have been able to give him a feeding cup so he doesn't throw his tea over himself, and a cushion lap tray to stop him spilling his food.  I understand your anger over Norman and I sincerely hope you get to have your day in court, so to speak. I wish I could complain for my friend, but a) he wouldn't want me to, and b) who would listen to a neighbour?. He doesn't tell his family about these things, just plays Mr Cheerful when they are there.

I have to stop now, my poor dog is being terrorised by the booming of fireworks and needs a cuddle. I don't  usually get cuddles so I'm happy to console him.

Billy, be sure to let us know how you get on.

Take care

Christine xx

Hi dear Christine, hope you're keeping well and still doing painting. 

When you mentioned your friends carers it made me wonder if it's the same company Brenda has, morning carer turns up mostly after 10 sometimes no one comes, Brenda likes to be up around 8 so I'm busy washing her drying clothes and breakfast,  .noon is nearer 14.00so we leave pots and pans for washing,. Bedcall anywhere from 1730to 2100, Brenda likes shower around 19.00 so quite often i do it and get Brenda ready for bed and her soup and meds. We've been tempted to cancel carers. But if im struggling we would have to re apply and could take months. Alot of times I've cancelled a carer as the time is to far out at night. 

Im still living on painkillers feeling drugged up. 

Brenda is good but worried, i surprised her with another nightie, dress and top all cotton and Brenda has trouble with itching with other things.

Thinking of you all. 

Love Billy xxxx 

Hi Billy,

I don't know who the agency is, that are supposed to be providing care for my friend, they don't leave a folder with records of the visits, it is all done by phone, they say, but they outdid themselves yesterday.  He told me this morning that the agency have lost two members of staff this week, so last night the people who came were the manager and area manager. Apparently, he had wet the bed the previous night, through his pads, as he has no sensation of needing the toilet because of his MS, and can't walk anyway, to get to the loo.  The carers who got him up yesterday stripped the bed, but didn't remake it, and when he was being put to bed last night, these two people said they didn't make beds, so he was wrapped in a duvet and left like that until this morning.  The people who came this morning didn't make the bed either, so his cleaner, who comes once a week did it for him.  He is being told not to eat fresh fruit because it gives him the runs, but he is hardly eating anything except toast and biscuits. They said it's because he has cancer in his bowel, but I think it's just because they don't want the extra work if he has an accident. He has been told by the doctor to eat and drink whatever he wants and to smoke as much as he wants, as he is on borrowed time and he can't do himself any more harm. The only thing good about what's happening now is that he isn't paying for the carers as his condition is terminal and needs continuing care.

I'm sorry you feel drugged up with your pain killers, but I hope they are doing the job and keeping you pain free. Brenda sounds to be doing well in your care, which is great but don't make yourself worse by doing too much.

love

Christine xx

Dear Christine our carer always does things on phone no paperwork at all, i know social services and adult social care can get onto details as they are disgusted with care details and timing but carer office just say under staffing problems. 

I've found another company im checking up on. 

Take care keep painting. 

Love Billy xxxx 

Hi everybody, I managed to get through yesterday with the support of every body.  Lots of wonderful cards with special words written in them, tons of chocolates and wine.  Lisa bought me a beautiful bumblebee necklace and Faye some sleep spray to go with my eye mask.  Even my brother came to see me, which trust me is a privilege.  Ella and Alfie face timed and then Harry.  Margaret took me out for lunch and lots of friends posted good wishes on Facebook.  I m sorry things aren't going well for you Billy and Christine with your friend.  I've had a quiet day and tomorrow is another hospital inspection, I've got two next week and that's it for now.  So I'll catch up with you soon. Love Carol x 

Dear Carol 21 again, doesn't time fly. 

Really glad you had plenty of cards and company and a few surprises. 

Hope hospital visits going well and your getting things running right. 

Love Billy xxxx 

Hi Carol, Hi Billy,

Happy belated birthday wishes, Carol, I know how hard the first significant day is when you have lost the person who shared those times. I am glad you have such a loving family and friends to make it bearable, Billy I hope you find a good agency for Bren's care.  You need help, reliable help, although with current staffing problems I think they are all having the same problems..

I spent yesterday afternoon in A&E with my daughter, who had experienced a whole night of excruciating pain.  As I caught her off guard, when I FaceTimed her in the morning while she was still groggy from no sleep, I got her permission to phone the doctor.  I was really worried, particularly as she said the pain was in her groin and hip, because they made such a fuss when I had a thrombosis in my thigh.  The doctor who telephoned her at lunchtime said that she should get down to the urgent care centre as she suspected it was either appendicitis or kidney stones.  By the time we got there the pain had eased off but she still felt nauseous and feverish.  The triage nurse was rather unsympathetic and seemed to disbelieve the extent of her pain, but the doctor was very understanding.  He said it was unlikely to be appendicitis at her age, and sent her to get a urine sample, saying if there's blood in the urine it is a sure sign that she had passed a kidney stone.  He is referring her to a "stone clinic" but said it is probably already in her bladder where it will have lots of space to swim around, but one day she won't be able to pee, then she'll get a pain and will be able to.  Today she was trying to think what could have caused it, because she drinks a lot of water.  The only thing she has been doing differently, recently, is drinking peppermint tea.  She has a lactose intolerance and was trying to find a hot drink to enjoy now the weather is cooling down.  Dr.Google has told her that it is not recommended if you have a tendency for kidney stones, so now she will have to find another dairy free hot drink to keep her warm. Whether the kidney stone is a result of the few weeks of drinking the peppermint tea is debatable, but it is the only thing she has added to her diet in recent months. I feel helpless to do anything for her, it Is one thing after another with her.  She has ME, with all that entails, she has to have Botox injections to try to reduce the number of migraines she gets, she had to have her gall bladder removed last year, the dairy intolerance and now kidney stones! 
I am still painting, Billy.  I am working on a dog portrait I have been commissioned to do.  I am getting, there.  I finished the one my daughter wants to give to her friend, and I am going to do one of Smudge, her little blue merle Sheltie, who died last year.  Once I've done them I am taking a few weeks off to catch up on my reading.  I have a whole bookcase full of unread books that have been loaned or given to me over the last few months.  It will be lovely when it's dark and cold, in Winter, to snuggle under a blanket reading a good book.

Take care,

love

Christine xx