Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

I don't really have anything constructive or comforting to say about the latest updates but I just wanted to acknowledge that I have actually read them all! Have been sleeping badly (hormones I think) the last few nights and school's gone back here so we've had to get up early. I'm so short of sleep it's not funny.

I got my operation time today, I've to be at the hospital at 7:30 tomorrow morning. I'm glad it's early so I can just get up and get there. A lovely friend has offered to drive me. I know she doesn't usually get up anywhere near that early so it's really kind of her.

When I had my earlier CT scan they noticed a cyst - presumably harmless - on one ovary, but it's about 4cm. They'd booked me a consult with a gynaecologist for a few weeks from now. Anyway the surgeon just called me and said she'd been looking over my notes and seen the info about the cyst. She said that she'd like me to have a CT scan in the morning as soon as I arrive, and she's going to speak to the gyno to see what s/he advises. Reason being, if they decide it has to be removed it would be better to do it all at once rather than me have to have a second operation later on.

Very smart obviously and I was very positive on the phone - probably way too cheerful - but now I'm a bit like ohhhhhhhh okay then.

I know it will be fine though and I'm happy for it to be removed if they feel it's necessary. It's served me well! But, you know...

I was tempted to urge her [the surgeon] to get a good night's sleep as I rang off but restrained myself

When I say I was probably way too cheerful I mean I was using a tone of voice that made it sound like we had social plans for tomorrow. "Great! OK, that's fine. See you tomorrow!" I could be wrong but probably not all her patients sound like that!

@LucyWarlowsRightHand

When I say I was probably way too cheerful I mean I was using a tone of voice that made it sound like we had social plans for tomorrow. "Great! OK, that's fine. See you tomorrow!" I could be wrong but probably not all her patients sound like that!

This is always me when I speak to the hospital. Everything is fine, no problem etc etc only when I hang up do I think I forgot ask/mention something. I then ring back and say I've been thinking/worried/this is a problem for me. I'm always trying to be helpful to them and not feel like a burden.

Recently though I've found myself sort of pushing back on them re setting up separate appointments and asked them to bunch them together where possible as the hospital is such a trek and I have to rely on lifts

No major update for me apart from today I don't feel okay mentally. I slept very well - a good 8 hours but feel knackered. I cleaned the upstairs (exhausting) and have decided the place is a dump - it's not, it's just a bit cluttered and IABU. So I sat and had a cry whilst looking at new wardrobes and wondering if carpet fitters are okay with moving stuff. And now I'm lying down too tired to care again. 🤷🏻‍♀️

All the best for tomorrow @LucyWarlowsRightHand

At least two of the three teams I am currently under think I’m utterly bats. I’m not sure if that makes me a heart-sink patient, or the one who brightens their day by making it a little more surreal

@KentishMama really glad to hear you're back home, hope you've had a restful day.

@LucyWarlowsRightHand hope tomorrow goes really well.

@iVampire LEJOG sounds amazing! When lockdown started I did a 5k to 10k training plan which I got on really well with (tho I am a very slow jogger!) but not sure if walking might be better for me for a bit.

@BitOfFun thinking of you. Thank you again for your wise advice and perspective upthread, it's still helping

Hope everyone else is doing ok. Trying to keep busy here. The hospital called me today to ask me to go in first thing tomorrow for another ultrasound at the breast unit, so that whatever extra images they're wanting can be ready for the multidisciplinary team meeting later in the day. I've had 2 breast ultrasounds and an MRI already in the last 3 weeks so not sure what these new ones now, maybe they want clearer images of my lymph nodes or something?! I'm assuming that if they needed a ultrasound of another organ they wouldn't be sending me to the breast unit. As you can see I've been overthinking this a bit! I am just so focused on whether the PET scan will have shown any spread that everything else feels like a bit of a sideshow at the moment. Anyway, less than a week to wait for results now so that's something.

So, this post surgery thing sucks. Too tired to do anything much, or to read anything intelligent, so I'm googling things I shouldn't. And I can't stop thinking, what if they didn't get it all out? The surgeon said there's a 25% chance of needing more surgery due to insufficient margins or similar. That number is huge in my head.

Also the compression bra they are making me wear is horribly uncomfortable and I can't imagine wearing it day and night for 3 weeks.

@Lubballoo hope they get the views they are looking for tomorrow, and that's there's nothing there.

@LucyWarlowsRightHand Fingers crossed tomorrow! I'll be thinking of you.

@KentishMama please be aware that a lot of cancer info on the internet is hopelessly out of date. Treatments and success rates have moved on very quickly.

How about audiobooks? I find them a really good distraction when I’m physically exhausted but my mind needs something to do (that isn’t too taxing).

My house is a shit tip after the ridiculously hot weather we’ve had and the busy week (and being the only adult here, with two kids). I’ve told ExH and he’s not in the least bit bothered (he’s horribly messy anyway) but I feel awful about it. But I’m knackered, I can’t do much.

It’s MY problem, nobody else cares, but I just like to leave things nice and neat when I’m away. I feel embarrassed.

Fuck knows why, ExH has seen me give birth after all! He couldn’t care less about the two baskets of ironing, and kids’ books and toys scattered (and piled up) everywhere.

Get a grip Lucy!

I think I’m subconsciously worried about dying under anaesthetic and leaving the house for someone else to clean up

Hope all is well as can be with everyone and all the best for today @LucyWarlowsRightHand (but please don’t give a toss about the ironing!)

Enjoy the pre-med drugs and the waking up 💐

Thanks @ElaineMarieBenes

It’s the thought of the drugs that’s keeping me going tbh.

I hope you have good drugs and in copious quantities

GCSE results out. I’ve no idea which version DD is looking at (I lost the plot on the detail of that some time ago), but she’s done really well (including in her weakest subject) and I’m very proud

Had my scan and the very lovely gyno says there’s nothing wrong with my ovary and the cyst is now so small it’s no longer technically a cyst 👌🏻 One less worry so that’s great!

Also great news about your daughter’s results @iVampire. There’s been so much bad news about them lately, so this is really good to hear.

The nurse here is lovely and my bed has a nice view, it’s next to the window. So all good so far.

@LucyWarlowsRightHand that's great re the cyst that's no longer a cyst (and the view!), hope all continues to go really well today

@iVampire congratulations to your dd!

It is an ex-cyst. It has ceased to be.

I was sitting here feeling a bit sorry for myself having just had 5 further biopsies taken (with limited local anaesthetic so they could better see what they were doing) and you have just given me an enormous laugh @iVampire, thank you!!

I've just read through all the many posts since I last checked in, gosh what a rollercoaster time on the thread, so many scans, bloods, biopsies, surgeries, treatments . .
@BitOfFun you haven't had the liver scan yet? Hope you don't have to wait much longer.
Pleased to see @Minxmumma has been downstaged and that @LucyWarlowsRightHand does not officially have an ovarian cyst - Lucy, hope your surgery today goes very well.
@InOtterNews glad you have been able to get out a bit.
@Lurkeycakewoman, bone pain can be truly horrible, so it's good you have drugs to help.
@Lubballoo sorry you have to wait longer for scan results. It is very hard to cope with the anxiety. Am holding my hand out to you.
Glad to hear that @TopOfTheCliff and @Piggles39 and feeling reasonably OK, and that @iVampire 's foot is getting better (but sorry you have to have more breast torture).
@KentishMama you take care of yourself and rest as much as you can. I think we probably all underestimate what surgery and other treatments take out of us.
@Redannie118 I do hope that nasty burn is less painful now.
@balkanscot flipping neutrophils, uncooperative bastards they are! I had three of my six chemos delayed . . crossing fingers for you.
Waving and sending good wishes to everyone else including @Babymamma192, @Notgettinganyyounger23, @TreeWitch, @Starmer, @ElaineMarieBenes, @Lizdeflores, @Thymeout, @gillmoregirl, @Squiffy01 and all the rest.

I got a call from my lovely consultant on Friday to say that the lung team had had their MDT meeting that morning and because my lung nodule is tiny and new -

now what would you expect her to say after that? That they'll just arrange another scan in a while, right? -

Wrong. They want to take it out . So my holiday was somewhat marred by Googling to try and find out what that would involve, and I have to say it doesn't seem like a walk in the park, even if it's keyhole; and having gloomy thoughts about pre-op shielding, being in hospital with no visitors, the hell of fellow-patients, post-op shielding, etc.

Consultant said they will do a PET CT scan and a lung function test. I have another appointment with her (by phone) on 26th so maybe I'll get dates then, if not before.

I am quite confident that whatever is there can be treated successfully. Just want to get it over with.

@Bloodybridget first of all I have to say that I'm in awe of the work you do on this thread.
6 years ago I had a benign tumour removed from my lung it was key hole surgery and it was really ok, in fact I had a 1 year old and I think I saw it as a it of a break! Admittedly this was before covid and the thought of the shielding before surgery makes everything worse.
I'm waiting for a date for surgery I'm not sure how we will manage the shielding as my son will be back at school.He and DH may have to move out which will be hard😢but I don't want him to miss anymore school.
My thoughts are with everyone x

@Lizdeflores thanks so much for telling me about your lung surgery, that's very encouraging! Tough for you facing surgery with a school age child.

Just surfacing after a week of awfulness from chemo round 2 and this thread is brilliant.
@LucyWarlowsRightHand you nailed it about the mess. My DH is a wonderful man but SO messy and when I am on the ball I keep him in order. I wandered downstairs like a zombie after three days festering in the bedroom to find chaos. I have realised this isn’t a problem as I am shielding so Nobody is Allowed In. I may make that permanent

Best wishes to all.
TopO

@Bloodybridget what an unexpected turn of events! Although it’s encouraging that they want to move swiftly, no hanging around/waiting for weeks and weeks. Sending you and fingers crossed for 26th August and beyond.

My second round was postponed this morning due to mouth ulcers. Although a nurse did put the canula in (very painful it was, too, and then she proceeded to say she knew what she was doing - she was a senior nurse but had been shielding herself until recently - well, she bloody didn’t do a very good job), then someone from the drugs section came down to see me, took one look at my mouth and decided to postpone it. In conjunction with my neutrophils which were above the threshold but just.

So, roll on Monday.

Waving to everyone else! 💐

@balkanscot I’m sorry to hear of your postponement and feel your pain over cannulas! My last one had to be put in by the interventional radiologist (so he could give me the drugs for the port fitting!!) as three senior nurses couldn’t get one in! I do recommend highly having a port if possible. Just got over my first AC - week to go for my possible second so good luck with yours 💐

I hope the operation has done what it was meant to do, and that you’re ok Lucy

Best wishes to everyone, and I hope something nice (no matter how large or small) over the weekend

Thanks @iVampire, yes it has! They haven’t bombarded me with too many details yet but it was a success.

I don’t want to get too carried away but it’s starting to look like there are no complications 🤞🏻

I felt really awful yesterday (nausea and vomiting) so didn’t post but I think I’m a bit more on track today. I just have to be very patient and take it easy! The nurses are all amazing and I know I’m in excellent hands. Hoping to be able to eat a bit more today. I’m rambling but it’s all going well 💪🏻💪🏻💪🏻

ExH has sent me photos of my bedroom where he’s broken down the old bed, assembled the new one and dragged the new mattress upstairs and the old one downstairs. I knew there was a reason I married him! He drives me mad at times but when the chips are down he’s always there for me.

Not sure what the weather’s like where all of you are but I hope you have the chance to get a “fresh nose” as we say in Dutch - a bit of fresh air That won’t be the case for me but my hospital bed has a great view of houses, trees and sky.

@LucyWarlowsRightHand. Good to hear from you, tho' sorry about the nausea. Yes, a room with a view really helps. I'll always remember waking up post-op in a window bed with the best view in London - the Thames, with the river boats going up and down, on the opposite bank from the Houses of Parliament. St Thomas' NHS. It's a miracle they've managed to avoid being knocked down and replaced with millionaire penthouses.

Do you know how long you'll be in? If it was robotic and no complications, with any luck it won't be long.

@Bloodybridget - what a pain to have to have another surgery. Will they still do it if the PET scan is negative? As I get older, I get more in the way of skin tags and moles on the outside, so it wasn't a huge surprise that the same thing happens inside. I had to have my colo-rectal surgery extended because of 'a nodule' they spotted where my jejeunum(?) joins the small intestine. Turned out to be nothing to worry about. 'Think of it as a BOGOF', my surgeon said.

Best wishes to everyone else, especially the colon crew, particularly @gillmoregirl. Hope you're managing to find some distractions from the waiting.

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