The cat was the final straw.

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

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

Hi Lass

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

Fruit and veg!!  Xx

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

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!

Fingers crossed for tomorrow afternoon! I'm, supposedly, seeing the top consultant at the hospital. So hopefully I'll get some sort of diagnosis and timeline.

I'll also have been cooking, cleaning, and tidying in the morning. So I'll be extra sore for him. Though hopefully not to the point of tears that has randomly happened a few times recently. 

For anyone who has lost track, because I had to look it up earlier today, it is now 10 weeks ago today that I had the colonoscopy. As Arla said the other day, I'd have probably recovered from a hysterectomy by now, so wtf?! 

Liver is also still giving my gyp. Not sure why. Kinda resigned to being broken by this point.

Fingers crossed, but don't hold your breath! You'll probably expire before I get this sorted..... (The dark sense of humour rises again!) 

Lass

Xx

Hi Lass 

fingers, toes, legs, arms and indeed eyes all crossed. Breathing to be maintained as per your instructions. 

I very much doubt you’ll get any answers but I hope at least you will feel that you’ve been heard. 

Xxx

So.... 

Had the appointment with the consultant. I really hate meeting new doctors, they always start off by treating me like an idiot who knows nothing about anything. Only after a few meetings do they realise there's not only a brain between my ears, but one that grasps scientific and medical things rather well. 

So after telling me at the first meeting I categorically don't have IBS because my inflammation markers weren't high enough, he's now told me I do have IBS. Now, TMI, I was referred to Gastro in the first place because now and again I get the most terrible gas. It comes out top and bottom, and I feel it building and being produced within my stomach or gut and the only way not to feel really uncomfortable is to let it out. It's also room clearingly pungent, and lasts for hours making me really unsociable to be around. I also sometimes have more diarrhoea than solid motions - this one has improved since the colonoscopy.

So, he's given me tablets for IBS that I have to take every day, 3 times a day, with food. First off, I don't eat 3 times a day. Secondly, from what he's said, these tablets are an antispasmodic to help with the pain and wind of IBS. He tried to give me Buscopan again, but I refused because of my heart rate and thyroid. He said he didn't care about the thyroid, but took my pulse. Apparently my highest measured heart rate of 176 in my notes wasn't enough, he had to measure for himself. He got it in the 120s, and agreed I shouldn't take Buscopan - which my GP wanted to give me a few months ago because the consultant said to, and presumed the consultant had taken everything into account..... READ THE PAMPHLETS IN THE DRUG BOXES PEOPLE!!

Anyways, I've not started taking the IBS drugs, because I don't think they are what I need. I did however start taking the Amitriptyline he prescribed for my abdomen pain. However that then made me sleep 14 hours a day or more. So I've stopped taking that.

So, abdomen.... Fuck knows. We've come to the conclusion it's post polypectomy syndrome, but due to all the radiation I've had for the thyroid cancer, I'm just healing much slower than what feels like anyone in history. It'll be 14 weeks on Wednesday since the colonoscopy, it's supposed to clear up in 10 days. Swelling isn't as firm, and pain isn't really there unless I bend too much/too far. So basically, don't squish it and it's OK ish. 8 weeks ago on Wednesday was my liver biopsy, that little bastard keeps sneaking up on me and reminding me it still hurts, quite a lot depending on the day, too. So yeh, I think my healing capability is a bit broken. Must take note.

Had the meeting with all the folks involved, lots of notes taken, and some answers given regarding why I was treated as I was that last time - I was basically booked in wrong. So still waiting on notes from it, I should chase that up, as well as a date for another meeting with the Surgical Assessment Unit Matron and whoever. As there were quite a few areas of complaint there. So will chase tomorrow.

Now, gall bladder. Remember 'doctor' who told me I couldn't be allergic to the dye because it's carbon based and I'm carbon based so it's physically impossible? Then told me my gall bladder was enlarged and inflamed, so that was the cause of my issues in my abdomen so referred me to hepato? Well, I saw the doctor I was referred to. He apologised for my wait, saying he was reading through all my notes to try and work out why I was there. So wondered if I could tell him why I thought I was there.

So I told him about being told my gall bladder was enlarged and inflamed, even though the ultrasound tech had said it looked fine and I had no tenderness. And that he'd pointed it out on the CT scan and said I could see how big and inflamed it was, but that he couldn't tell me what size it was supposed to be as they're all different sizes.... 

Specialist doctor pulled up my scan and the report, apparently it says COMPLETELY THE OPPOSITE! The report stated it was healthy and with nothing wrong of note other than the gall stones we've known about for a year but that were an incidental finding. What a waste of my time, his time, my money, and the NHS's money.

Good thing that SAU meeting hasn't happened yet. Cause that's getting added to the complaint, because something needs done about that doctor. He's a menace! 

So other than all of that, I've been trying to find a dress for next month as one of my brothers is getting married. Nothing is long enough. Nothing looks good on my super sized, fat swollen body. It's just been depressing me no end and I've been in a real slump. When you hate how you look anyway and try to avoid mirrors, to look at beautiful clothes you know aren't ever going to fit you, and instead you're buying the ones that look like sparkly sacks, then you are forced to look at yourself in the mirror just to check if it's less hideous than anything else you've tried on, then time and again you have to send things back because its not made to fit blob shape. Gets to you after hours and weeks. 

And to top it all off, on Thursday night I was sitting watching TV and suddenly it felt like something in my back unravelled, and I was suddenly in hideous pain. Breathing too deeply hurt. It's still bad now, not as bad as Thursday, I can at least move now. But there's that debate in your head.... Random muscle or tendon done something funny, even though I was sitting watching TV and not doing anything to pull or strain anything? Cracked vertebrae from a bone met, as it's in the right place for it?

Who knows, wish there was a way to check without heading to the GP. But Masterchef is on, so back into denial mode.

Lass

XX

Hi Lass 

I literally have no words. Except maybe alternate Master Chef with Bake Off. You could outbake any of them, even dressed in a sparkly sack. 

Love and hugs

xxxx

Oh Lass, what a lot you have going on, too much all at once as always.

Amitriptyline can be very effective, but it knocked my husband out for the count. He was prescribed it for nerve pain following a crush injury to his foot, and was started on the maximum dose. He literally couldn't function, but after a break we started again on the absolute minimum dose, and he never went much beyond that and tolerated it well. 

It does sound plausible that your previous treatment has ****ed up your healing capacity, and your thyroid problems and rapid heart rate make it all so much more complicated. 

It's shame that your brothers wedding, or at least an outfit for it has become a source of stress and unhappiness. I've met you 3 times, and can honestly say I have no idea what you were wearing, but your personality positively shines from you!!! There are 'radiators' and 'drainers' in this world, and you are absolutely a radiator, even when we're talking about difficult things, and I come away feeling better for having spent time in your company.

I do understand that shopping for a wedding outfit is a huge strain. It's highlighting the physical changes you've gone through as a result of monumental health issues you're dealing with. But I would rather have you at my wedding in a sparkly sack, upfront and centre stage, than not have you there. You need to be as kind to yourself as you would be to one of us.

Denial has it's place at times! Hope the back pain is easing...Low impact compression fractures are usually painless and picked up on scan, but if there's one thing we do know, nothing about this is 'usual' ;)

Sending you a massive hug xx