Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

The cat was the final straw.

Tinalay
Posted by

Gragon, you're a very patient man  It was worth going to the market just to see the pork arseholes on display!!! xx

Tinalay 
Tinalay
Posted by

Oh Lass.

I'm  so sorry, no wonder you're exhausted and at a loss to know how to keep up the momentum.

Do you feel able to take a step back until you see the Consultant at the end of the month and put all your energy into rest and recovery for now? The stress of having no explanation for your symptoms and not being listened to as you wade through mind boggling bureaucracy would defeat most people.

I wish I had something helpful to say, but have no idea what else you can do. It might be worth speaking to a medical negligence lawyer.

Big hugs xx

    

Tinalay 
Lass
Posted by

Heya Daloni, 

I had a lovely time with Tinalay and Gragon. Got some good deals on fruit and veg too, but more on that later. Even though I'm still recovering from the beginning of the week, the meet up with the pair of them really lifted me. 

And yes, it's been absolutely ridiculous trying to just find out what's wrong with me. I'm not asking for forbidden medication, or the right to die on my own terms, or any similar fight these amazing people go through to get what they need. I just want to know what's going on with me, and I don't understand why noone can tell me! 

Hey Gragon, 

GP doesn't plan to do anything as it is out of his hands. PALS is for patients, not doctors - so he can't chase them. He already sent a letter to my Gastro saying I needed to be seen. This was over a month ago now, and he's being ignored.

Heya flower lady, 

Yup and exactly! 

Heya Tinalay, 

Next time you should buy some bum holes! Cook them up and then tell us how they taste! Lol

So, I've had 3 calls this week regarding my issue. First was PALS saying they were on the case and passing the issue to 'the matron'. Second was from the same Admin guy I've spoken to before, he got a flea in his ear for sending me to see a doctor without telling the doctor why I was there or what was going on. Then also that the doctor hadn't got back to me as promised. He also said he could see it was passed to the matron, and that she'd respond to me in writing. I asked when and he said..... Within 21 days. I said that wasn't acceptable as I'd already been waiting almost 8 weeks for an answer. He said he'd chase up, I didn't hold my breath.

I saw my GP on Tuesday, and he'd got a letter from the doctor I'd seen 2 weeks before who didn't get back to me. He gave me a copy, and I could just feel myself getting angry. He'd answered none of my questions, and answered some he'd made up himself. It was like being in a twilight zone that made me question my sanity. 

The third call I got was from the matron. Turns out she's in charge of the endoscopy and colonoscopy services. So that's that question answered. After initial pleasantries she just bluntly asked me what it was I was looking for. I said it wasn't complicated, it was a very simple request, I just wanted to know what was wrong with me, how long would it last, and was there anything to be done to make it better.

Well... 

Seems she isn't in diagnostics, so can't help with that. But she can assure me that nothing went wrong in the colonoscopy. I said great, but that doesn't really help me. 

So she's supposedly going to see my consultant tomorrow at their weekly meetings. He's apparently not just a doctor, but a researcher, and also a highly skilled endoscopist too. So she's going to arrange a meeting between myself, her, him, and the lady who did the colonoscopy. That way I can ask all of my questions and hopefully get some answers. So we shall see I guess. 

But on a more pleasant note, at the market I bought a bowl of avocado's for £1 - got 14 in the bowl!, 5 punnets of strawberries for £1, and 30 garden eggs for £2. So came home and looked up recipes I fancied doing. So ended up making Avocado Gazpacho, Nigerian Stew with Avocado Rice, and a Strawberry and Peanut Cheesecake.

There's also some strawberry, balsamic, and avocado sorbet in the freezer. But I'm not sure if I'm calling that a success or not. Lol. But I'll also be making avocado macaroni cheese when I'm up for cooking again, so long as the avocado's last! Lol

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

flowerlady
Posted by

Hi Lass

Very impressed by your cooking. Even more impressed by the prices of the

Fruit and veg!!  Xx

Flowerlady x
Gobaith
Posted by

Hi Lass, 

Your food looks amazing. I love avocados - my favourite. Shame you're not closer or I'd be inviting myself over!

Let's see if I can manage to boil some eggs for tea... (will be a struggle, cooking is not my thing!). 

x

Clare
anndanv
Posted by

Hi Lass, It sounds like maybe,M if this meeting does take place with you there, you could eventually have your questions answered! However, if this is not sooner, rather than later, I would be contacting my local MP or newspaper. Sometimes even the threat of this is enough to get the ball rolling as no one likes bad press or having to explain themselves to MP's. Hopefully it won't come to that but if it does, I would be sending them a copy of the letter of complaint you sent weeks ago and ask if they think you are asking too much by wanting to know what's caused the symptoms and what can be done about it! It's ridiculous, of course you have a right to know!

By the way, did you know you could freeze any left over avocados? You slice them thinly, blanch them, put them in a freezer container in layers and then you have them when you need them! Just a thought!

Good luck AGAIN this time, I hope you hear about when this meeting is arranged for, at the latest by the end of the week! Your meet up sounds great! Maybe we should try to arrange one for Glasgow as its been years since the last one!

Love Annette x