Meds

Heya, 

I'm not on Omeprazole but I am on Lansoperazole, a different type of PPI. 

PPIs do affect absorption, so you need to take them at least an hour after your thyroxine. That's not an issue on Omeprazole as it can be taken with/after food, but Lansoperazole needs taken at least 30 mins before food on an empty stomach is best. So on days I'm hungry and want breakfast, it's a bit annoying. Lol

Hope you're well! 

Lass

Xx

Hey Lass,

Thanks for the advice, I’ve been making sure to wait an hour before taking it! I’m going back to the docs anyway as they put me on it 2 weeks ago as I’ve got a persistent pain under my ribs radiating round to the right. He thought it might’ve been my stomach or gallbladder so wanted to rule out stomach first.

Got my MRI of hip on Thurs next week to try get a definitive answer on whether it’s spread there or not. Also appointment with surgeon next week where I imagine I’ll be discharged from his clinic. Busy busy!! Other than that all good, just back from holiday

How are you Lass? I’ve been keeping up with your profile, you’re such a strong person! You keep me feeling positive 

xx

Heya, 

How's the pain going? Any better on the PPI? 

Ah the gall bladder. I have gall stones, a third of people do, but they never cause me any issues. Not so far anyways, touch wood! But I do know that if one were to get stuck in a tube then there'd be a pain under my rib, radiating around to my back, and apparently, up into my shoulder weirdly. Easy to diagnose with an ultrasound. They look at your gall bladder while you are lying down, see if there are stones, note their positions, then sit you up and scan again to see if they've all moved with gravity. Lol

MRI - are they planning on giving you more RAI anytime soon? Just make sure and tell the techs you've thyroid cancer and are in the middle of treatment. They should double check with the docs if they can give you the contrast dye or not because it's full of iodine. So if you have the dye, it will mean RAI can be delayed until all the iodine gets out of your system. Not sure what your treatment plan is, but just something to be aware of just in case.

Hope the holiday was a good one! 

As for me, depressed. Trying to find a dress for my brother's wedding next month and I've failed to lose the weight I wanted to, and my stomach is still bloated and swollen from a complication after a colonoscopy 3 months ago. So NO dresses look ANY good on me, and I just look and feel hideous in everything I've tried on. So that'll be fun when it comes to photos.... Bleh! 

Also got a complaint lodged with the hospital that I think I probably need to chase up. Especially as I've more ammunition for it after my hospital appointment with a gall bladder specialist! Lol

Good luck with your appointments! 

Lass

Xx

Hey

Not really helped, just feels the same. It’s mainly sore to touch or when I move a certain way which is why I thought I strained a muscle at first but it’s been there for 5 weeks now! 

You sound about as lucky as me! I’ve got kidney stones, been hospitalised with them 3 times in my 28 years but out with that they cause me no issues as long as I drink loaaadssss of water. I remember a few people on the kidney ward having gallstones, they sound a pain. 

Went back to GP today and took bloods to check for Helicobacter and sent away for ultrasound of Gallbladder so we shall see. 

With regards to the treatment plan, they’re unsure. This is why they’re doing the MRI as my full body scan after RAI showed iodine uptake at the hip, then the same at my 8 month follow up body scan. They’re not 100% it’s a spread and won’t decide on further treatment till they decide if it has or not. Should I mention it to the person doing the scan? I assume if they ultimately decide it is a spread to the hip then I’d be having another dose of RAI before Christmas. 

I went to Vienna and Salzburg, Austria is a beautiful country. It was great thank you.

There is nothing worse than feeling crap in everything you try on! You’ll be being harder on yourself, maybe take an honest friend with you when trying stuff on. I feel like if you know they’re a brutally honest person and they say you look nice in something then it makes you feel better haha 

It sounds terrible the stuff you’ve had to deal with. As if it’s not bad enough having to deal with the physical and mental effects of these illnesses it’s having to be a step ahead of them as they seem hopeless. Must be tiring!! I think because consultants are only specialists in their specific area, once you have multiple health issues they really don’t do well at talking to each other or know much about each other’s areas. It’s like you have to remind them of all the other things you have going on. It’s definitely something lacking for those with multiple health problems

Keep us posted on how your complaint gets followed up!

xx

Hmmmm, got to say, in my totally untrained opinion, lol, that sounds like a gallstone is being a bugger. Good that you're being referred for an ultrasound though, they should tell you then and there what's going on with it if you chat with them throughout. Hopefully there won't be too long of a wait to get an appointment! Fingers crossed for that one!

I'd def mention it to the scanner, or even try and get a hold of your nurse if you have one, or your consultant. Check with them if they are OK with you have contrast dye or not. I honestly can't remember how long it takes to get out of the system, but my gut feeling is you wouldn't get RAI this year if you had it. But that bit might be wrong, so don't quote me. 

The thing is, the size I am I can't go to any shop because they don't stock my size. With the swelling in my abdomen, I'm a 26 at the minute. So it's only the fat people shops I can go to, and they don't always stock the full ranges. My nearest Evans is an hour on the bus, if I could take one, and too expensive by taxi, because they closed down the city centre one. So I've had to look at things online, then try them on here at home, then send them back. It's cost me a fortune, because not all sites have free returns. And one place wanted me to return to America!!! So I think I've spent over £50 just to try dresses on! I'm not impressed.

Then, with the pain from my mets making it hard to walk and stand, trailing shops and trying things on is awful too. But I'm going to have to do it to find blasted shoes once I've sorted the dress. I'm an 8/9 depending on how they've been made. And I've not got time for this buying online and sending back polava. So I'm going to just have to dose up on pain killers and go for it one day. I'll also need a decent bra too. Joy.

I'll try and summarise the story of my complaint..... 3 months ago I had a colonoscopy. That night I started with some pain, the day after I blew up like a balloon. I saw numerous people, got numerous diagnoses for what was wrong, but noone seemed to be taking it seriously. Apparently, the consultant said I'm too nice and smiley, so when I say I'm in pain, people don't believe me because I'm not acting as they expect.... 

Anyways, last doctor I saw before putting in the complaint clearly thought I was an idiot. He had seen in my notes that I had gallstones, so decided that was the issue despite what the tests said to the contrary. My pain is lower right of my abdomen, beside/below my tummy button. My gallbladder is under my ribs. So at first he came up with a story of referred pain. Possible, but unlikely in my uneducated opinion. I asked him if I might be having an allergic reaction to the dye they injected to a polyp. He said no..... Because the dye is carbon based, and I am carbon based, so it's physically impossible for me to be allergic to it. Firstly, I'd already googled it and knew it was possible. Secondly, and this is the key part, all life on earth is carbon based, as is everything in organic chemistry. So peanuts, cats, dogs, pollen, bees, wasps, etc etc. You know, all these things people are allergic to? All carbon based.

Anyways, then he brought up my CT scan and pointed to a blob saying it was my gallbladder. One of his comments was along the lines of, you can see how enlarged and enflamed it is. I interrupted him and apologised, saying I only knew the blob was my gallbladder because he'd told me. So I had no idea how to tell if it was enlarged or inflamed. So I asked him how big it should be and how much bigger was it. At this point, he kind of started stuttering, before coming out with the fact that they all come in different sizes, so there is no right size it should be. So I asked how he knew it was enlarged.... He couldn't answer. Just dismissed me saying he'd refer me to the gallbladder specialist. 

Well, saw him. He had NO idea why I was there. The scans of my gallbladder show absolutely NO signs of inflammation and NO signs of being enlarged! So that's the new ammunition to be added on when I see them. I mean.... FFS. Total waste of NHS resources and my taxi fares! 

Lass

Xx

Hey Lass,

Yeah, its still there so I had my bloods done on Thursday to test for the helicobacter and got a call from the hospital about my availability for the ultrasound so should be in the next 6 weeks...she said they might be able to do my neck and gallbladder at the same time...2 for 1!

Got my MRI on Thursday, no dye so all good. Should hopefully get results when back at clinic in October but I know there is a backlog with reading results.

Sorry, I feel like it was a bit insensitive of me to make assumptions about your mobility and stuff, I wasn't thinking! Crap that you have so much pain. Yeah that's the only killer about online shopping is having to send it all back. I end up with lots of things that still have labels on as never got round to sending them back. I hope you managed to find something in the end. I grudge paying for bra's they're so bloody expensive!

Can't believe you have had to deal with this absolute rubbish! I think it should be you thinking he was an idiot not the other way around. I don't understand why, if they don't know the answer and it's genuinely not something they have come across before, they can't just be truthful with you rather than make stuff up!! Was the gallbladder specialist not like wtf?!? How is the complaint coming along? How is the pain now, is it still there? 

R xx

Sneaky little bugger that it is! Have you named it yet? I've named 4 of my tumours. Lol. Each has a reason why it's called what it is. Feel free to guess if you're interested. 

Thyroid cancer met in the rib is Eve. 

Meningioma (benign brain tumour) is Tom.

Lipoma (Benign fatty tumour) on my right arm is Addy. 

Lipoma on my right shoulder/base of neck is Posy.

Haven't named the other two thyroid mets or the other two lipoma. Haven't been creative enough to! Lol. Figured it was easier in conversation to say "Eve is really playing up at the moment", rather than "The cancer in my rib is aching just now". Totally different tone, and doesn't ruin a conversation and depress people.

Helicobacter? What's this and why are they testing you for it? 

241 means slimy bits all over! I don't know how you feel about it, but a couple of the ultrasound machines they've used on me have had a gel warming station on them.... Warming?! That stuff felt boiling hot when it was squirted on me! I'd rather have ice cold any day! I also refuse to wear the gowns. Waste of time and just irk and choke me. Lol

Don't worry about the mobility comments, absolutely no offense taken, I didn't even blink at it. It's not like we'd met in real life and I'd walked up to you with my crutch and you then suggested I go jogging.... As some medical professionals have, I shit you not! Lol

I've a pile of stuff on the couch opposite me, with two more orders in the post. Overdraft is pretty much maxed out right now. Taking it up to Edinburgh at the weekend to try on in front of my Mum and see if there's anything that would do. I've got a vest top I think I can dress up with leggings, jewellery, boots, and makeup. But we'll see how much she thinks I'll be letting the family down this time if I wear it. 

As for bras, YUP! This is why I own 4. 2 packs of 2 at £15 each, so £30 for the 4. Totally comfy, absolutely not flattering, and showing their age. Lol. I'm expecting this one bra to be about £40 to suck, tuck, lift, and squish in all the right places! Lol

And yes, the gall bladder man was totally bemused by it, while I was just rolling my eyes! Swelling is less firm, but still as large. Pain is fine so long as I don't bend too often or too far. Liver biopsy is the thing pissing me off recently. Though on Thursday something went in my back which has been agony. I'm hoping it's a tendon or muscle and not a crack in my vertebrae. But no way of knowing without going to a doctor. Fun huh! Lol

Fingers crossed for a speedy ultrasound appointment! 

Lass

Xx

Haha no I haven’t! Maybe when I find out what the hell it is I’ll name it! 

Ive has a good think and I can’t come up with the reasoning behind your names but I’m curious now haha spill! Yeah makes sense, I think it’s so important to keep your sense of humour through this.

Helicobacter is a bacteria infection in the stomach and they’re testing me because of this pain I have under the ribs. Still not got the results! 

Hope you have a good weekend up in Edinburgh, the weather will give you a nice welcome as always haha

I’m the same, I own 3 very worn out ones!

Did you find out what happened to your back? Have you heard anything about the complaint too?

xx

Lol. Yeh, I'm a bit weird and a bit left field, but the names do make sense.... 

So Tom is from Harry Potter. Tom Riddle is the human name of Voldemort. In the first book, Voldemort was in Professor Quirrell's head! Lol.

Eve in my rib is from the Bible, because apparently she was grown from Adam's rib. 

Then we have Addy and Posy, the fatty lumps. If you are a Dr Who fan, you should remember the episode where women took weightless pills that actually turned their fat into Adipose.... Little aliens made up of the fat from people's bodies! Lol. 

Told you they were a bit left field!

Weekend was good, but I'm exhausted now. But my nephew loved his party! 

That's at the end, the two at the front are my niece and nephew. 

But still waiting on xray results to see if my back has cracked or not. If not, I'm not sure what's happened, but it's bloomin sore still! And it def feels bony as opposed to muscular or tendony!

Complaint is ongoing. I'll edit this and find the link to the thread I've been documenting it all in..... 

https://community.macmillan.org.uk/cancer_experiences/living_with_incurable_cancer/f/7cf15f26-3cf9-4436-895a-f7d7ee79310c/183616/the-cat-was-the-final-straw

Lass

Xx

Omg I’m a massive Harry Potter fan so gutted I didn’t get that! Haha I love all the names very clever! Maybe I’ll name mine Shakira since my tg doesn’t show but the hip doesn’t lie. “Hips don’t lie” get it? I think that’s probably the worst patter I’ve ever thought of in my life

Awww so cute! They look so happy haha they never seem to run out of energy at that age. I have 6 nieces and nephews with a 7th on the way, they’re plenty for me!

Hope you get to the bottom of what it is soon. Surely it’s quite dangerous if something in your back has cracked, you think they’d get a move on.

Great I’ll keep updated via that thread

xx