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.

Morning lacies happy Thursday xx I've just caught up with everything since last weekend - phew you're a busy lot!
Keep Im back in my underwired bras 3 months post op - although I find the wire digs into my breast bone now so I use a wedge of folded toilet paper to ease the discomfort - classy bird that I am. My BCN suggested cutting the underwires our of my bras which I did with a couple - but my posh boob doesn't stay put and moves across so that's no good.

Noodles glad to hear you've got started with the radio - it'll be done before you know it. I found radio much easier to cope with than chemo.

Leslie maybe you could build a wall of wheat bags around your bed to keep out the naggy visitors??

@KnickerBockerGlooooory like sand bags!!! That's genius! @WhatWouldLeslieKnopeDo please tell me you'll get someone to do this

Keep calm - a lot of us took the pink pills as they seem to be the preferred option for bowel cancer. I have to say I didn't find them too bad at all. We took them combined with an iv one which was horrible. I have a friend with secondary bc who's been on it for 8 years now and she tells me she has no side effects at all. What was it that you wanted to ask?

I took Cape in a low does during radiotherapy and then higher between July and Dec while also having IV chemo. I’m hoping I’ll be back on them soon.

I don’t find them bad at all to be honest. A bit of dire rear but they give you Loperimide to help with that. Otherwise the worst thing for me is remembering to take them!

And like Dulce I know people who take them for secondary breast cancer and they have done for 5+ years with no problems to report

@Dulcedelecherocks thank you. I don't really have a specific question as such just always reassuring to hear real life accounts as opposed to the official jargon.

If it works I'll be on it long term as a 'maintainable approach'. But I don't know if that means 5yrs, 10yrs etc. All she'll commit to is 'for as long as it works' Fair enough, I know they don't have a crystal ball.

But in the meantime I have to organise the sale of the business and start job hunting. If I have 5yrs then we might manage. If I'm looking at more like 10 then there needs to be a plan and 80+hrs a week self employment isn't it.

I know everyone is different in their reactions and just because others have had certain side effects it doesn't mean I'll be the same. I guess and just trying to get impossible answers to questions I haven't even worked out yet

@Namechangeforthiscancershit thank you, fingers crossed you get back on them soon

Like with everything until you start you don't know how you'll react. I was driving myself insane worrying about side effects as I have a bit of a phobia of throwing up and in the end I felt queasy but never actually puked.
I get what you mean about not wanting an 80 hour a week job. It's sad that you have to sell the business but I think I would do the same.
I'm currently doing a job (I work in a huge company) which I find a bit boring but I work from home most days and have a relatively easy life for the same money I used to earn as a senior manager. So I've had to accept this is a better option rather than chasing promotion.

Keep calm I was on them too. As Dulce says seems to be standard for bowel cancer. They gave me very bad dire rear but once they sorted meds (loperimide plus something stronger) it was ok. I'm sure dire rear was made worse by not having most of my colon too. I was able to work through treatment. I was tired but I think that was more the IV chemo drug that was given in combination with it.

Keep calm meant to say it's very dose dependent too - they lowered mine to reduce dire rear. Do you know what your maintenance dose is?.

Delurking to say to Leslie that I'm so sorry. You are a remarkable person and I hope you know that you have helped countless people with your kindness and thoughtfulness. You are so generous with your time and I hope you feel the warmth of this strangers virtual hug.

Lovely hug, thank you twoseven :)

I had capecitabine too. Moisturise your hands and feet well. I got palmar-plantar syndrome (aka hand foot syndrome), but not too badly. I know others who had it more severely, but even then it's manageable. I tried a bazillion different moisturisers and found Neutrogena deep moisture comfort balm was the most soothing. I recommended it to a couple of people who also found that it helped.

They mentioned capecitabine on Silent Witness the other day, but she pronounced it weirdly and it annoyed me

Big hugs for Dulce for tomorrow. You'll be eating cold post-op toast before you know it :)

Anyone heard from pandora recently?

KeepCalm the job stuff sounds so stressful

purple hopefully you'll get that nurse again. They shouldn't be hurting you

Apparently the overstaying guests hadn't seen our message saying only half an hour until they got home. But that's even worse, as it means they didn't actually know that we were OK for them to visit when they turned up I am so cross with them, but there's no point saying anything as they won't visit me again!

They mentioned capecitabine on Silent Witness the other day, but she pronounced it weirdly and it annoyed me

OMG that REALLY annoyed me too

Oh yes I already have that @WhatWouldLeslieKnopeDo thank you! Shall start slathering that on immediately

I feel like a bit of a fraud posting here, so I'm sorry, but I think it's the best place to get a variety of answers.

I saw the GP yesterday for a variety of gastro issues which came to a head with a fairly large rectal bleed on Tuesday. As she couldn't see any fissures, bleeding piles, or any other source for the bleeding (and as I've passed old blood in stools too), I'm on the two week pathway.

I've had my colonoscopy date today - it's on 22nd of this month. I know I have to take a bunch of laxatives the day before which I'm being sent in the post, but my questions are:

1. Will they make me feel sick? I have diagnosed emetophobia, and I need to know honestly so I can mentally prepare.

2. How much warning do you have before pooping? I know the bathroom will be my best friend, but do I literally need to camp in there?

3. Will I still have the shits the next day? I'm not at my closest hospital, and my boyfriend lives closer to the ones I'm being seen at. Should I stay at his the night before?

I'm young (33) and already have a coeliac diagnosis, so the chances are it won't be cancer but something like diverticulitis or (what the GP suspects) IBD. Unfortunately, I know a lot of you have experience of this pathway, and I'm struggling with the unknown (I've got an autism diagnosis, so the speed and lack of preparation and information is making me incredibly anxious).

I am a bit worried it could be cancer because of the speed of the referral, but then feel really silly for being worried. I'm sorry that this is really trivial compared to what you're all going through, but I'm really hoping someone doesn't mind answering my questions.

Leslie can you pretend to snore REALLY loudly so unwanted visitors take the hint? I feel for you as I hate having to entertain people. I much prefer having the house to myself so I can slob about anyway I want to

Just got back from the doctor about my kidney and she was worse than useless. She didn't think I could have oral antibiotics so she was going to send me back into hospital for an IV drip until she rang the hospital who told her not to. It seems to have cleared up quite a bit but I've got a weeks worth of oral antibiotics just to make sure it doesn't get worse

My weighted blanket has arrived and it's so heavy! I'll be testing it out tonight and will report back tomorrow. I'm hoping it's worth the money but I've got 28 days to return it if not

hugandroll I am emetophobic too so I’m your girl.

1. absolutely not. No nausea or vomiting for me. Felt slightly off becuse of the fasting but that’s it.

2. hmm not loads of warning honestly. I was in the bathroom with my laptop watching TV for the worst of it.

3. the next day it should theroetically have calmed down thanks to the fasting etc, but mine wasn’t completely done. Could manage a journey to hospital though no problem.

I hope that helps

Namechange thank you so much! That really does help. I'll make sure my phone is charged and I have a good book in the loo.

Dulce sending healing vibes for you tomorrow
Leslie Did you survive the milkshake without coughing?
purple good luck with the blanket tonight.
Hug I can't answer your questions, but fingers crossed for a positive outcome

Hugandroll I'm emetephobic too and it's something I always wonder about the bowel prep for colonoscopies. I think I'm going to need one soon because I've had to make yet another GP appt for ever changing bowel habits, passing blood with motions and constant abdominal cramps, all of which has been going on over a year (had a sigmoidoscopy which was OK but my personal opinion is that they need to look further into the bowel).

Also still waiting for my vulval biopsy which was meant to have been done on the 17th January I'm going to phome and chase up again tomorrow.

Namechange I'm glad I'm not the only weirdo cancer pedant

wombat I did indeed survive, and enjoy, the milkshake!

Rosiesmummy that's a long wait. Good luck chasing up. I hope you get some answers about your bowel issues too.

HugAndRoll it's a two week referral because it could be cancer, but that doesn't mean it's likely. They need to rule out possible cancers quickly though. I was emetophobic, but chemo cured me of that! anyway, I didn't have any nausea/vomiting with the bowel prep either. I didn't need to camp out in the bathroom as I had enough warning and it wasn't that frequent or long-lasting. It did last until the next day though - I had to stop at the cinema on the way to the hospital to use the loo all the very best

purple what weight did you get? I went for a lighter one than recommended as I was worried it would restrict my breathing. But even so I do find it quite heavy. I only use it at night when I don't need to move much! :) it's really comfortable though. I hope you like yours and that you get a better night's sleep. And I hope that the antibiotics help sort out your misbehaving kidney

I had a surprise visit from a lovely friend with some fancy cakes, so we will enjoy those this evening :) I've been very lucky really and only had the one lot of unwanted visitors (and snoring would be too subtle a hint for them!).

My hospice nurse has upped the dose of my fentanyl patches again (no, iPad, not genital patches - heaven knows what they would entail! ) as I have been having more abdominal/groin pain. I also have tablets for my oral thrush so hopefully my mouth willl stop tasting funny soon.

I have just seen that Bowel Cancer UK have launched a new symptom diary. It lists various symptoms and you can tick off each day that you experience them. It might be of use to those of you monitoring bowel symptoms.

Thank you, everyone.

I know it's not likely to be cancer, which is why I felt bad for asking here, it's just that many of you have experience of the process. I'm torn between worrying it'll be something, and worrying it'll be a waste of NHS time.

Oh no, sorry I didn't mean to make you feel bad for posting here! Anyone having tests for cancer (however unlikely) is welcome here. I was just trying to reassure you that the speed of referral isn't necessarily a cause for concern whatever the outcome, it's not a waste of NHS time to investigate your symptoms.

Hi everyone waves I’m sorry I haven’t read the thread yet but I think I could do with a bit of handhold.

I’ve been seeing a consultant for a lump in my neck, had a needle test that came back inconclusive, then a scan that said not cancer but now have repeated the needle test and consultant says might be cancer but the only way to find out is by removing my thyroid - or at least the swollen half.

I don’t know how I feel about it all. I’m not in shock because I already kind of expected it when the consultant’s secretary rang me earlier this week to change my appointment from end of Feb to this week... DH is understandably upset. I’m not sure what to say to my parents or DD.

To make things more complicated, I’m starting a new job on Monday. Do I have to tell them straight away or can I wait until I have a date for surgery? It’s in a big retailer and it’s my first job ever in this country - I haven’t even started yet and I'm already terrified of losing my job - that’s me probably getting my priorities wrong.

Anyway, I’ll go back and have a read on the thread. to everyone going through this shitty thing.