CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

[WhatWouldLeslieKnopeDo]

Good morning everyone,

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here.

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

Hi everyone,

Since starting treatment I haven't had a period (nor have I had any pelvic radiotherapy) but have some hot flushes & a few very sweaty head moments - one where I was convinced I had spilt a drink on my pillow in the night, but it turned out my head had just been incredibly sweaty! Nice. My cancer is hormone positive & my hormones are being blocked which has probably set my fairly minimal menopausal symptoms off.

purple thanks for the heart pillow, it is lovely and arrived today.
Thank you.

Are you still in hospital Lesley? I hope the croissants were good if so

Have you been for your appointment TQ? Any idea on the trial details yet? Sorry if I have missed your post, I have been a bit haphazard this week at getting on the thread. My chemo has been moved from Thurs to Fri due to an issue at pharmacy, so I have an extra day this week of feeling normal

Are you at chemo today ranout? I hope it went well.

Good luck with the pumpkins pandora is there anyone else that would be able to oversee it so you can go back to bed for a bit with your aching joints?

I hope everyone is as well as possible.

Hi Noodles and everyone
No, no news yet - my appointment is not until the 14th so I have to wait another couple of weeks. A very kind poster on my OC thread has sorted a parking permit for me so I don't need to stress about that. And another very kind poster has sent me some info on Olaparib, which is very useful, though the current trials involving Olap all seem to involve patients with the BRCA mutuation, which I don't have. (Same BRCA gene for OC as for BC.)

It's a case of hanging out for the trial just now - weighing up increasing stomach ache (which means it's spreading) against starting 'normal' chemo sooner, which would obviously rule out a trial.

I need to put off chemo for as long as possible (because it then becomes continuous), and not letting the cancer get too far, but the only gauge for that is how painful it is and since I got to stage 4 without a lot pain (apart from my lung and a few other symptons, yes), I'm not sure pain is good marker...

Anyway, I'm feeling good otherwise. Permanently tired and not up to much but still good for a daily walk! I also picked up 6 relaxation CDs for 3.48 (charity shops) so I've go to upload those to my ipod now.

Leslie how are you? Still in hospital? I hope you're being entertained and not bothered by other patients!

I had largely completed the menopause at time of diagnosis. Hot flushes are actually a symptom of blood cancer, but who thinks of that when all the other features of hormonal chaos are sneaking up and going ‘boo’ at inconvenient times?

The chemo I had before the switch to the targeted drug saw off the last bit - no period since (it’s one that shuts down your fertility pretty ruthlessly if you have to take it for any length of time).

I have a female consultant of similar age, no probs talking to her about symptoms. Except when she has s student in.

It must be much worse for those lacies with bowel cancer. Or do you just get used to talking about every shade, consistency, smell etc anc fo do with gay abandon (and as many terms as eskimos have for snow)

Oh yes the poo chat! I am one of those people who has never talked about a bodily function ever. Or rather HAD never. Now it’s all I bloody well do

And I thought I was doing quite well when I discovered the term steatorrhea. There must be a whole world beyond!

My first presenting symptom was persistent dire rear - probably an infection that was hard to shift, but GI team still surveillance my liver cyst and I have an actual appointment soon too - poo still weird, but that can be side effect of leukaemia drug. At least I’m kind of hoping it’s just that and nothing worrying trotting along in tandem

Hello all

Still here. Typing one handed due to major cannula and port issues. Finally got working cannula so keeping my hand completely still! Please excuse curtness and any typos.

Namechange/iVampire I'm also very uncomfortable discussing bodily functions. Luckily my surgeon was always very good at interpreting my euphemisms. Annoyingly people seem to think that just because you have bowel cancer, you want to discuss their bodily functions

Namechange yes cold makes my lungs worse. Do you have a salbutamol inhaler? Also could pain be adhesions? Mine are from surgery but I believe you can get them from radiotherapy too. Mine feels like period pain. In sinewy bit between pubic bone and hips. Hopefully you'll get some answers on Friday :)

TQ great news about the parking permit. Sorry you're in pain and the implications of that

noodles enjoy your bonus day :) I didn't have much appetite so I haven't tried the croissant yet. It is in my bag in case I fancy it later! (In packet)

purple lady earlier had had a mastectomy (some hilarity ensued as another patient misheard as vasectomy!) and had one of those pillows so I thought of you. How are you feeling?

pandora sorry you're having such a rough time of it. I hope you all survived pumpkin carving!

likeazebra great news about results. Sorry you're struggling. I've known a few people with thyroid cancer (some on here) and it always seems to take so long to get the right level of medications and get everything under control

Simmi hope you got your nails done and that it cheered you up a bit

Temperature went back up and oxygen dropped earlier so now on stronger antibiotics and oxygen, which is tickling my nose!

It's taken me an embarrassing length of time to write this so apologies if I've cross-posted.

Goodnight lacies

Glad you like it Noodles and that it's gone to a good home. I also get a really sweaty head on a night despite having no hair 😁

TQ only 15 days to go! Hopefully you'll get there and get on the trial without any issues before then

Leslie how long do you think you'll be in hospital for? It's lovely being looked after but I bet you're missing your own bed and new mattress

I've been for a CT scan today to see if the chemo is making any difference. I'm seeing my consultant next Wednesday but not sure if that's just a check up or if I'll get my results then. I'm really not expecting good news as I generally feel rubbish although it could be the chemo, I'm so uncomfortable and bloated all the time

Oh Leslie hope your cannula and port issues resolve quickly. Actually it was sunny here yesterday but I suffered dizziness and blurred vision from being out in the sun so had to come home and rest. Anyone else had this from chemo? Nails will have to wait unfortunately. Have a good night lacies

TQ that is a fine balancing act. Will they do any further scans prior to a trial to check size etc given you have been fairly pain free in getting to stage 4? I hope your stomach is not too uncomfortable at the moment. I am sure you notice every twinge which must be hard trying not to over think/worry. As purple says, only 15 days until the trial appt. Hopefully you will have no issues before then and can do the trial alright (if that is what you choose after getting more info)

My toenails are still a pain, one on each foot is purple and sore and one of my big toe nails is manky looking. Fortunately I have footwear which is fairly ok comfort wise. My daughter stood on one of the offending toes earlier though and it is throbbing! It's a good job I love her!!

Lesley the cannula must be a right pain, I hope it is all resolved soon and you feel back to your usual self ASAP. The oxygen & anti biotics sound like a heady mix! I hope you are not in hospital too much longer

purple I hope the chemo is having a good impact and the reason you are feeling so rubbish is chemo related. Are they likely to tweak your chemo regime at all? I hope the wait for the results doesn't take too long & have you worrying too much.

Xx

Hi Gin I'm on Tamoxifen. I've had heavier but shorter periods, otherwise it's been fine.

Good morning lacies, my chemo was delayed again blood count low I assume. Anyway I just see it as a bonus week now! Means I can take the kids treat or treating and go to a bonfire at the weekend! Fingers crossed I can have it on Tuesday and then hopefully as it's Docetaxel and they will give me injections to raise my blood count they may go back to every 3 weeks - who knows!
@WhatWouldLeslieKnopeDo fingers crossed your feeling a lot better now and nearly home to your nice mattress, craft and icecream maker!
I'll keep on readying the thread and be back later. Waves to all.

Thanks minnie. I am 57, so as I’m probably through the menopause - have a Mirena coil so no periods anyway - they will put me on something other than Tamoxifen. They did tell me which one was likely but it did go in one ear and out of the other. Too much information to take in.
leslie hope you’re back home soon.

Yay for a bonus week ranout! It's good timing with the Hallowe'en/bonfire fun

noodles ouch! That's the worst. I hope they improve soon.

Yuck Simmi that's no fun I hope you're feeling better today. I get blurry eyes from the steroids, but it's not affected by the sun. It might be worth mentioning it to your team in case there's something they can do to help.

purple sorry you're feeling so rough. Hopefully they'll have your results next week, even if they haven't had a chance to discuss them. And hopefully they'll show the chemo is decimating the little fuckers

Waving to Minnie and Gin

Feeling a bit rough. I think I'll be here a while yet. It's quite up and down. They had to call the emergency on-call team earlier but I'm glad I wasn't actually dying as they weren't very enthusiastic I'm having some more tests, but it's mostly a case of waiting for the antibiotics to work. It's sepsis but at least I'm not neutropenic!

I think you're supposed to feel a bit rough Leslie - you'd be a bit strange if you didn't! Hope the oxygen has stopped tickling. Shame about the on-call team, although I guess you could take their attitude as "Humph, nothing terribly interesting to be worried about here...." which is actually a plus.

I hate iTunes with a passion. I successfully uploaded some CDs the other day and now I can't get the effing thing to work properly.

Noodles I don't know if they would tweak my chemo, I don't think I could deal with it being increased as the side effects are awful as it is although if that was my only option I'd give it a go. My toenails are starting to tingle a bit, I hope it's not a sign that they're going to fall out. Luckily my fingernails are fine although they always have nail polish on so I'm not sure if that helps protect them from chemo

Ranout I hope you have a fabulous weekend with the kids and no chemo

Oh Leslie I didn't realise you had sepsis as well! You don't do things by halves do you? I hope you get sorted and get home soon

TQ I use Spotify, they seem to have less issues than iTunes

State of my lips 

Where has the rest of my post gone?!?!?

Sorry for big scabby pout pic with no explanation!!

I NEVER have dry lips, poor DH gets cold sores but I never do and look at the state of me.

Keepcalm my lips and eyelids are really dry. Weirdly my fingernails and rest of my skin is in better condition than ever since starting chemo. I use this on my eyelids and lips

Hi

Oh sorry thought we were just posting random body parts

Sorry to hear about your lips keepcalm

When mine crack it’s more the corners (do lips have corners?) and I chuck on lip balm like it’s going out of fashion but I think that just makes it more comfortable really and they get better when they feel like it!

Lol @Namechangeforthiscancershit don't tempt me or I'll start showing you my lumpy boobs BA HA HA HA

I've bought every bloody lipsalve including that sodding nippy blisteze stuff.

It's like having a baked potato skin stuck to my face!!

Have an eyebrow. I bought wonderbrow which was recommended since mine are falling out but it dries so fast so I'm stuck with these for days. It will not come off which is fine if you can draw a decent eyebrow with them. Unlike me 😁

Did you manage trick or treating ranout?

I have a sore boob, but I think even MN would ban pictures of rude bits

Waving back at Leslie. I hope the antibiotics kick in soon.

Evening all.
I went shopping and I'm now in a&e again. Apparently shortness of breath and chest pain should not be ignored so I've had a lovely lecture from the doc whilst the nurse stood and laughed as she knows me and knows that I'm a bullheaded rhino and she's threatened to tie me to the trolley so id better behave.

So iv fluids, some antibiotics and a snooze. Not impressed as There's no sweets not even behind the nurses station. Sorry state of affairs.
I've got a funky purple boob if we are showing body parts.
Keepcalm- my lips are peeling in the middle. Looks like either leprosy or I'm the living dead but smothering my lips in Vaseline at night helps.
Purple-i always look like a kid that got hold of markerpens when I try to do my eyebrows. I'm not very good at subtle.

I've been smothering my hands and feet in body creams. Wilkindons have some nice scented ones in their own Range. Think I've got cherry and blueberry atm