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

999 replies

WhatWouldLeslieKnopeDo · 07/01/2019 13:33

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.

OP posts:
Thread gallery
19
Namechangeforthiscancershit · 11/01/2019 08:55

toofar isn’t it weird how fast your idea of “good news” shifts? Grin

Namechangeforthiscancershit · 11/01/2019 09:16

I bloody hate this waiting room. Just walking in gets me panicky. Maybe it is time to look at the anti depressants again.

addle are you going to try the nurse today or do you need a few days to get over that (call)? I’d be the latter but I am a ostrich especially compared to everyone on this thread who are so informed and proactive.

Namechangeforthiscancershit · 11/01/2019 10:01

Sorry it’s all about me today it would appear! Grin

Good news from clinic in that chemo’s done its job for now, so I can have a break while they ponder other options and keep an eye on me. Thought I was going to throw up in the sink while waiting so relieved I didn’t (not least because I fancy this consultant a bit Grin)

CazY777 · 11/01/2019 10:06

That's good Namechange, and good that you didn't throw up in front of the dishy consultant!!Grin

I still get major waiting room anxiety, even though I'm on anti-depressants!

Toofaroutallmylife · 11/01/2019 10:25

Really pleased to hear that namechange

Fluffysunshinepants · 11/01/2019 10:37

My waiting room anxiety kicked in big time yesterday, resulting in them believing i have a clot, blood pressure was high, heart tachycardic. Spent hours at the hospital having tests, required clexane and now at home awaiting a CT scan appointment. Fingers crossed its not i have enough to be dealing with.

Hope all are as well as can be expected x

TwitterQueen1 · 11/01/2019 11:15

Toofar and namechange It's great to have some good news for a change.
Fluffy fingers crossed indeed - you don't need that as well as everything else
Purple how are you doing today? I'm so sorry the news isn't better.

No news from my weekly check-in - it's too soon to know what's happening. I do know my CA125 blood marker was 480 in mid-December and 560 on the 1st day of treatment... the norm is 35. Hoping to see a reduction next time.

Mrstraveller · 11/01/2019 12:17

Toofar. Yes I think I understand what you mean re perspective shifting. At the start of my diagnosis I was horrified at the whole idea of cancer treatment, mastectomy etc. I am scheduled for my mastectomy on Monday and I can't wait to have it and am almost more anxious about it being cancelled for some reason!

Yes re the waiting room anxiety (and I am on a relatively high dose of AD's). At the clinic I go to they the nurse takes you into a room and you have to sit and wait for the Doctor or Consultant to come in almost like they are making an entrance on stage. I feel like I'm waiting in the dock for justice to be dispensed.

Mrstraveller · 11/01/2019 12:30

I had an anxiety dream last night that I had forgotten the rule about not eating after midnight so when I got to the hospital they couldn't do the op Confused

peridito · 11/01/2019 12:31

Mrs Traveller I feel like I'm waiting in the dock for justice to be dispensed. I know exactly what you mean .

So many times like this during the whole process .Mine is behind me now ( my esophageal cancer was dx in 2013 ).I remember feeling completely alone and devestated in hospital when I was being prepped for surgery ( hibiclens shower ,braclets on arms and legs ,chage of gown,surgical stockings ) .Not helped because 5am in morning + nurse was an agency ,swiss ,male ,very precise and sort of automated .

Couldn't get the phrase "Lamb to the Slaughter " out of my head .Smile

NameChage that's a bit of good news !

Fluffy so what you don't need .Fingers crossed it's nothing too alarming that can't be dealt with .Flowers

Thinking of all those waiting for results and tests .

Hoping Purple is at home and that both she and infinite Leslie are comfy .
TQ hope the nos are heading in the right direction,when is the next test of them ?

Namechangeforthiscancershit · 11/01/2019 13:09

Ahhh that thing of being shown into the room and then waiting and waiting drives me mad! I go from moderately panicky to full on break down once I’m sat there!

iVampire · 11/01/2019 13:16

I had good news this week.

My bloods have reached the milestone for me to be pronounced as having achieved Major Molecular Response. So I stay on the first line drug.

Getting that response in no more than a year of starting on TKIs (the family name of this type of cytogenic drug) is strongly associated with longevity.

They don’t use the term ‘remission’ when treating CML this way. but functional it’s the same thing, I stay on the meds for life though, with 3 monthly monitoring of liver/kidney function, a PCR test to check I stay in MMR, and another test that’s called ‘bone’ (not sure what that one is, maybe one day I’ll remember to ask)

Mrstraveller · 11/01/2019 13:20

Great news IVampire. Very pleased for you. I also like running but nowhere near your standard. I haven't been for a run since the day I was diagnosed as with all the chemo etc I just haven't had the will/energy. I hope to get back to it at some point this year....

Namechangeforthiscancershit · 11/01/2019 13:27

iVampire that’s wonderful news

Toofaroutallmylife · 11/01/2019 14:13

leslie and purple - hope you lovely lacies are ok and just conserving your strength Flowers

FuzzyWhiteLegs · 11/01/2019 15:10

Excellent news name and ivampire!

Thinking of all the lacies today, especially leslie and purple Flowers

AimlesslyPurposeful · 11/01/2019 16:23

That’s fantastic NameChange and iVamp!

So pleased for you Flowers

peapod66 · 11/01/2019 19:00

Great news namechange and ivampire. Thinking of Leslie and purple if you are up to reading Thanks.

WhatWouldLeslieKnopeDo · 11/01/2019 21:01

Good evening all

It's been so busy on here! I'll never catch up properly.

Huge hugs to addle Flowers

Glitterball for Namechange and iVampire

Fingers crossed for TQ's numbers and Fluffy's CT scan

Toofar good that you've got a plan - fingers crossed for your bowel biopsy Flowers do you know when that will be?

noodles I hope your daughter is feeling better and that you managed the school run without too much trouble! It's probably easier to just buy my own cheese to be honest :)

kitdomgem I hope the side effects improve for you

Rosiesmummy I'm knitting scarves for my cousins. I offered when I was in better health. And I have quite a big family. I only have three left to do. It's getting a bit boring now. So I'm also working on a crochet blanket, which is much more interesting.

purple thinking of you lots Flowers

Waving to peapod and wineoclock and mrsrhod, and everyone really

I've been knitting/crocheting all day, after sleeping in late. When I'm just sitting here in my bed watching telly I actually forget I'm ill for a while.

OP posts:
peapod66 · 11/01/2019 21:10

Leslie it's good to hear from you and I am full of admiration for the knitting/crocheting as I am unable to attempt such things even when well!

Mrstraveller · 11/01/2019 22:05

Yes good to hear from you Leslie. Thinking of purple too.

purpleunicorns · 11/01/2019 22:13

Namechange that's brilliant news! And you too Ivampire what a relief

I hope your DC is feeling better today Noodles, mine used to be so clingy when he was poorly

Good to hear from you Leslie Thanks

I'm still in hospital in an isolation room as I have a bug called VRE and I feel like crap so I have no idea when I'll be home

Waves to everyone I've missed 👋

Mrstraveller · 11/01/2019 22:17

purple. Sorry to hear you are still in hospital. As you are in a room on your own are you managing to sleep? Flowers

Taytotots · 12/01/2019 00:39

Great new namechange and iVamprire.
Purple sorry to hear about the infection. Hope you feel a bit better soon.
Addled six months! There must be something else they can do to see what it is?! I have CEA levels checked as part of my monitoring but keep meaning to ask if they checked it before they treated me as apparently some tumors don't raise levels. However, I think for those that do it is a good indicator so at least might be a bit reassuring. Good luck with your appointment and hope you get some answers.

StandByYourTesselators · 12/01/2019 01:35

I thought of a few things that might be helpful to those about to have mastectomies.

It's probably gonna be nowhere near as bad as you fear. No-one I've spoken to who's had the operation (can only speak for no reconstruction) has had any significant pain afterwards.

Stay ahead of the (probably fairly mild) pain by taking regular painkillers. You'll probably be given the equivalent of over-the-counter ones, and this is likely all you'll need. I took them for three days religiously, and just as and when I started to feel ache-y after that. Trying to lie in unusual positions to sleep probably caused more discomfort, as did the sticking plasters on the drains.

Drains. You'll have a soft silicone tube running from below the wound (probably out of a little hole below the scar) and into a little suction pot. Get a little cross-body type bag to put the pots in, or wear things with pockets that can hold them. If not, you might get them caught round your ankles when you go to the loo, and rip them out when you stand up and have to rush to A&E in your pyjamas to get it sorted. Blush My drains stayed in for 10 days. Oh yeah, try and have a little table or pile of books by the bed. The drains can't be above you, but if you sit them on the floor there's not enough slack in the tube (depends how high your bed is I suppose).

You won't be allowed to get the scars wet for 7-10 days so bathing and showering is out. As I wasn't really mobile enough to safely get in the bath where our shower is, I got one of those large rubbery bucket things to stand in, and tip jugs of water over the bits below the scar. It was a lifesaver being able to feel properly clean.

Definitely do the exercises they give you - mostly gentle stretching to stop the scar tightening, and preserve your range of movement. And if they don't give you a sheet with the exercises on, ask because they should.

Don't be terrified that your first wee after the op is bright (and I mean really bright) blue. This is normal, and to do with the dye they use to help them trace the path of lymph fluid during the op.

Don't forget to ask for the tinsel-lined bucket to take the boob away in. Just coz KeepCalm's consultant said no, doesn't mean they all will Grin

purple I hope you get home soon. And that someone is bringing you chicken soup... or the vegetarian/vegan equivalent

Leslie Sending you love. I''m sorry you're locked in the tower with all that wool and two knitting needles. If that little man comes back, tell him his name is Rumpelstiltskin and you'll be free!