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.

I got my days mixed up I find out about my trial on Monday at 2:45. I don't think my kidneys are up to it though as when I have to drain my left nephrostomy bag that's attached to my kidney it's really dark and looks like there's blood in it while right bag drains clear. It's been fine until yesterday so I'm not sure what's caused it

TQ I think weakness and fatigue are the worst side effects of chemo, I hate not being able to do much without having to sit down. Although I'm like that now and I'm not even having treatment. I've just realised I should have changed my fentanyl patches 2 days ago so that's probably why I've been in more pain that usual

I'd have a heated blanket if it didn't need plugging in, the few plug sockets I have are already full of extensions. My weighted blanket should be here soon so hopefully that helps me sleep

mrsT so far so good with radiotherapy. I have only had 2 sessions (& today's has been canx as the machine is being serviced) I got myself a bit worried before about holding my breath long enough to avoid damage to the heart & had a minor inward panic about my heart getting zapped because I had breathed out too quickly. I have now been told that the machine automatically switches off if I breath out too soon, so that makes it feel a lot less scary! It hasn't hurt at all, in fact was quite an anti climax for the first one as the most uncomfortable thing was that the room was freezing. I tried to warm myself up more in readiness for the cold room yesterday (thick jumper & heated seats on the way in) which may have helped slightly. The advice is to keep hydrated, drink 1.5-2l of water a day and moisturise twice a day (the affected area) the radiologists recommended e45 cream or Moo goo. Nothing that leaves a layer on your skin (like body butter) and nothing too perfumed.
I can feel that the op feels a bit different, but am probably being hyper vigilant. Also when my youngest head butted the op site I think it may have made it more irritable now as hasn't completely settled down from that. The nurse didn't think I should feel any different for at least a week.

Gah about left kidney drainage purple!

You're so due some good luck and better news . Bugger living life as well as you can .Be as badly behaved as you can be . Not very I suspect given pain and a load of other hindrances to letting rip .

I hear you about few plug sockets but FWIW I think electric blankets use v little power and wouldn't add much in the way of a drain on the supply . And they are so comforting .

Hope changing the patches helps - it's hard trying to remember all the things you need to be doing when feeling rough .

So. I was plucking up courage to call the Dr when a letter dropped through the door.
I'm all alone at home and worried out of my head 😥

born I’m really sorry, I don’t understand enough about that to help you. Even though my bowel is totally buggered.

I do entirely understand about the panic though. You are not on your own- you have all of us. Could you ring your GP and ask him or her to explain?

for babyagga today

Borntobeamum just offering a hand here . I'd phone your GP and talk .

It sounds as though they haven't taken any biopsies ?

Barretts oesphageous is scary but honestly it's quite common and regular monitoring will make sure that if ( and it's a big if ,not a when ) it does progress it will be dealt with .

Have you a friend or relative who you can talk to ?

I've just messaged my husband asking him to ring me, he's away on business and in meetings all day. Therefor I do t want to use the phone to ring my Dr In Case he tries to ring. No one to talk to x

Spoken to my husband and called the drs. A Dr will call me this afternoon x

Now just had a call from Colorectal nurse booking me in to see Consultant @ hospital on Monday morning x

Borntobe I don't post here often any more and I don't know anything about colon stuff but just wanted to say well done for calling the drs and hang on in there. It's such an anxious time waiting and I'm sorry you're on your own. Hope your DH can call/be home soon.
I hope too you can fill the time up before Monday with as many distractions and treats as possible; easy to say and hard to do but anything that takes your mind off thinking about it even for a little while is good.

Very best of wishes and thoughts (useless, I know, but what else is there?) to all here. I don't want to be too personal as I'm not in the swing of things but am lurking and caring - which sounds a bit creepy put like that but isn't, promise!

Probably not of any interest but for any BC people, post-mastectomy I got a couple of soft but moulded bras at Uniqlo, which have been great. More support than unwired but nothing hard or poke-y. They also do those vests with inbuilt shelf-bits, which are nice.

I think one Lacy should invent a perma-warm wheat bag and make a fortune!

Smiling wave to Leslie

Hi borntobe - hope you get a bit more clarity from your GP this afternoon. My consultant described this as the “fact finding” stage - when they start looking and they find things that just need further investigation so they can come up with the right plan for you. It’s not a nice stage to be at, I know

purple I missed your post earlier as it takes me an age to type sometimes. I hope pesky left kidney goes back to draining clear fluid again. Does drinking lots of water help? Maybe a few gallons between now & Monday may help (or make them go into overdrive, sorry have no idea) I will keep everything crossed for the trial news on Monday.
Also, can you set a daily reminder on your phone for the patches to be changed so you are on top of the pain as much as possibles?

borntobe I hope the GP call helps late

Later not late...

Borntobe I hope the GP can help you. It might be worth asking for something for your anxiety too, as you've got a bit of a wait until Monday

purple oh no! I hope the pain eases now you've remembered. Did the nurses see the colour difference when they changed your tubes? I hope it improves soon.

TQ I hope you get a chance to rest this evening

minty it's lovely to hear from you. How is DD at the moment? Love to you both

Also thinking of you baba

I had a surprise visit from the district nurse. She is ordering a special sheet to help move me if/when I become too weak to move myself. I don't have much appetite so she suggested milkshakes. So I'm now enjoying a McDonald's chocolate milkshake. Obviously I won't be having those every day. I'm waiting to see if it aggravates my cough (so far, so good...)

Waving to everyone

Obviously I won't be having those every day

Because you’ll be having 3 a day?

Only 3? I shall be bathing in it.

Going back yet again to our ongoing discussions of squash and suchlike, I'm trying Waitrose lemon and lime squash. It does have sweetener in, but not aspartame. It's quite zingy, which helps with the icky funny tongue taste.

Thanks Peridito, I think the new patches I put in this morning are starting to work although they can take up to 12 hours to get into my system properly. Even getting up from the couch has been a painful effort today

Born another handhold here for you. Can you find something to keep yourself busy with until Monday to try and take your mind off it?

Noodles I've drank gallons of tea and it's not as dark as it was so hopefully it's getting better. My blood test to see how they're doing is tomorrow so I'm hoping it's cleared up by then. I've set a reminder to change my patches, I didn't realise how much they help with the pain until I forgot to change them

Leslie the district nurse I saw yesterday was really young and didn't seem to know what she was doing so I didn't mention it. Although she was lovely and took her time changing my bags so it didn't hurt too much.
I'm very jealous of your chocolate milkshake my nearest McDonald's is nearly half an hour away. That's what I get for living in the middle of nowhere I hope it doesn't make you cough

Purple - Uber eats now deliver McD's!!! Just saying....
hope your kidneys look and feel better tomorrow.

Lesley I have visions of you bathing in chocolate milkshake. Please tell me you don't like strawberry or you'll spoil my dream!

Afm I'm having surgery on Friday to remove hernia. Should be a piece of cake and everyone keeps saying it's nothing compared to bowel cancer surgery but I'm still bricking it.

Ok so hands up who wants the next Cancer Reaearch campaign to feature Leslie bathing in milkshake? Would make a change from all the depressing pictures of sad bald models...

Oh and for the avoidance of doubt my hand is up

Dulche my love, I’m not sure having had cancer means you’re no longer allowed to worry about anything that isn’t cancer does it?

Namechange I'll back that one .

Good luck for Friday Dulce. Yes it's much less major op than last time but it's still an op - I'd be bricking it too, not like last time is a pleasant memory!

Purple hope the kidney recovers.

Baba hope colonoscopy went well.

Thanks. You're right name. You're just supposed to not be scared of anything unless it's cancer! Well I'm still terrified of cockroaches. And snakes. And I'm not the best with heights. Do you think that's allowed?

@Dulcedelecherocks am with you on the snake thing. No need for those feckers at all!! Will be thinking of you tomorrow

Morning everyone. I am floored after some work efforts and have had to cancel attending today's commitments so am now wasting a lot of energy swinging between berating myself and self pity
Does anyone have any experience of Capecitabine at all?

I’ve read the official literature but would love to hear if you have. Am due to start after a course of radiotherapy as a long term option and would rather hear it from you lot (the experts)