New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

Afternoon all,

Brain picking time! Not always easy with those suffering from chemo fog, but here we go.

Picc line covers, where can i get them from? Best material? Don't want anything that will irritate.

Can you make them?

Any advice is very much appreciated xx

With difficulty TQ! Luckily I don't need to change the bags, I have a nurse coming twice a week to change them. I can just about reach to empty them, it's just like a little tap that I need to turn so it's pretty easy although the bags don't hold much at all so I either need to stop drinking or I'll end up having a few accidents
I'm still in solitary but I'm going to ask if I can go home tomorrow. I think they're quite happy to keep me here forever.
I need to start being an awkward patient and constantly press my buzzer so they get sick of me

Hi Chicken, I have no idea about the chances of things coming back clear. Do you know when you'll get the biopsy results back?

Fluffy Etsy do some nice covers

www.etsy.com/uk/search?q=picc%20line%20covers&ref=auto1&as_prefix=picc

I don't know if I have cancer yet, but through pure chance my GP sent me for blood tests and a urine analysis. Was called back to do them again today. The nurse said my B12 and vit D was a concern. Then gave me a bottle for urine. I saw on its label that it was for Bence Jones. Looked it up when I got home and apparently it's for Multiple Myeloma. Has anyone else had this? It doesn't look good from this end. Please advise if you can! Big thanks 💖

Frog Bence Jones is just the name of the test. It doesn't mean they suspect you have cancer. It could mean many, many things so try not to get too worried. The test is identify whether or not there are is anything in your urine that shouldn't be there, whether your kidneys are working properly etc etc. I'm not being unkind here but I think you've added 1 plus 1 and got to about 100! One step at a time.

TwitterQueen1 thank you for replying. I'm worried. Have had lots of unusual symptoms since mid last year. But it's good to hear it might not be cancer, although something in my gut tells me it is. Will try not to get too worked up until the results. But the usually nasty receptionist is being super kind to me. That alone is worrying! 🙁

Frog you are correct that Bence Jones is the major test for myelomas.

That does not mean that your doctors think you have a blood cancer, but because the symptoms of blood cancers can be quite non-specific, it’s a good thing that they are ruling it in/out early on. They are probably running a heap of other tests for all the other possible explanations.

How long does it take for the results to come through? The waiting and worrying bit, before you even know whether you have cancer at all, can be one of the very demanding times.

Best advice is ‘don’t google’ - it’s true for everyone in that horrible limbo, but especially true for blood cancers (because the treatments for some have improved enormously in recent years/decades, but there’s still a lot of the old info Out There online)

purple is there any option to get bigger bags?! It sounds like a right pain. I hope they let you go home soon, before you have to start being a nightmare patient

Waving to everyone else

I've been really sleepy today. We had guests, but I just couldn't keep my eyes open! I dozed while everyone else chatted. It was rather lovely really. I parked up just before they left, which was a shame.

IVampire thank you for replying. I’m worried hence my Mumsnet question but am trying to keep calm because worrying my family over something that might be treatable is the last thing I want to do. I do appreciate your advice. Thank you 🌷🌷🌷

I hope you don't have to wait too long for your results Frog. The waiting really is the worst bit

Unfortunately not Leslie, the nurse said if they did then they would be too heavy and fall off. I've got catheter type bags to attach during the night so at least I'm not having to get up during the night to empty them

I've just had the nurse round to do all my paperwork and she said I can go home on Friday once she's sorted the district nurse out and the palliative team to arrange to see me at home

Froglette has anyone actually told you they suspect you have cancer? This test could come back completely normal. And presumably it is part of the standard battery of tests for the symptoms you have presented with. They obviously try to rule out more serious conditions first. It doesn't mean they think they are likely. Hopefully you'll get all your results soon and have a better idea of what is going on

purple freedom is finally in sight! That's great that makes sense about the bags.

Just a quick one to @Fluffysunshinepants my mum made me loads of picc line covers I think she found the pattern online. You need to make sure the fabric is stretchy! Here's some she made earlier!
I'll read the rest of today's posts later!

If anyone needs an example of someone burying their head in the sand 🙋🏼‍♀️

I haven't even packed my bag and I've to be in before 7am.

I'm rubbish at this 'patient' shit.

Time to scroll back to find the excellent hospital bag list someone did earlier.....

Feck it have skimmed this thread and the last one and I can't find that really useful hospital bag post or remember who did one for me 

I'm aware that I'm a 42yr old grown up abs should be able to do this myself but I suffer from terrible indecision 

@Pandoraslastchance I hope you manage some sleep tonight. Will be thinking of you tomorrow

I hate packing.
Kindle, phone, ipod plus chargers
lip balm, wet wipes & mouthwash - plus the other essentials.
knickers!
Dressing gown
slippers
secret food, like chocolates or nuts

probably a whole load of other things too.....

And good luck too of course! not that you'll need it. It will be over very soon and you will feel better for it.
Pandora thinking of you too. for both of you

@rosiesmummy17 is your gynae appointment tomorrow?

Hope it goes OK

Keep fluffy socks. Bottle of water.

Best of luck tomorrow - pandora too - hopefully you'll be in recovery gasping for a cuppa before you know it xxx

keepcalm and pandora good luck for tomorrow. Re packing - headphones, nice smelling shower gel always makes me feel a bit better, moisturiser (always so hot and dry in hospital).
Fluffy the best PICC cover I had was this folding up one (two layers so lines in middle rather than on skin). Probably not too helpful as US company but sure someone makes similar in UK mighty-well.com/products/mighty-picc-line-cover.
Purple glad plan be-super-annoying worked and they are kicking you out on Friday!
Frog hope tests negative. The waiting is horrible.
TQ hope hands a bit better. Moo goo was recommended to me as that's one of the possible side effects of CAPOX but luckily I didn't get it so haven't tested. Good moisturiser though.

Hope everything goes well today Keep Calm and Pandora. It’s strange how when you arrive back on the ward a mug of tea and toast tastes fantastic.

I was glad I had the extra long phone charger cable, knickers, wet wipes, lip balm, hand cream. Toothbrush/toothpaste. Headphones. I left my purse and all jewellery/watch at home. Just took a tenner in cash but didn’t need it.

Xx

Toofar - they phoned me on Tuesday to cancel it as somethings cropped up with the consultant and he's had to cancel all his clinics hope he's OK.
I burst out crying on the phone and the secretary reluctantly told me to come in for the appointment but that it would be with a junior doctor who won't be able to do anything anyway (her words). So I've kept the appointment as I'm hoping that when they see how the lesion has gotten worse (and actually the whole area has) the junior doctor migbt be able to expidite the biopsy when the gyn is back. Thank you for thinking of me!!

Good luck keepcalm and Pandora. (Sorry I'm rubbish at replying on here!) Will be thinking of you both.
Rosie sorry your consultant isn't going to be there. It's so disappointing when stuff like that happens. Hope the junior doc can do something.

I'm going into hospital tomorrow for a couple of weeks - so those packing lists have been v useful! TQ Secret food! Why didn't I think of that? I'm getting an escalated combo of chemo as an inpatient, as the chemo I was on wasn't quite as effective as we hoped. I'm quite nervous about the risks and side effects, but also keen to get it done and over with.

Thinking of you @KeepCalm and @Pandoraslastchance looking forward to hearing your updates.
Morning everyone

All the best to those with operations, and for hospital stays

And Happy Birthday (to the poster who mentioned one on the operation day)

Good luck and thinking of Keep and Pandora and to Tahiti for the next couple of weeks, and also to Purple for managing your exit! Hope all goes as smoothly as possible.

Good luck today keepcalm & pandora I hope you got your hospital bag sorted keepcalm (at least you won't have Christmas cards to write as I ambitiously did!!)

Also roll on Friday purple light at. The end of the tunnel in the escape plan....

I hope the next 2 weeks of hospital goes well & quickly for you tahiti

MrsT the drains are a pain aren't they? I only had one but it was draining 300ml a day to begin with. More into a pouch than bottle though, so they must differ depending on which hospital trust. Mine was in for 16 days post op, so I hope you get yours out quicker...

I got a date for my radio thru of 4th Feb to start... CT and tattoos next week....

I was thinking of people that haven't posted in a while & wondered if anyone had heard from tsonly at all recently?

I hope everyone is feeling as well as possible, will be thinking of everyone having ops (whilst still doing jigsaw puzzles leslie as the eldest has a uti now and the youngest is still off her food!)

X