Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

@WhatWouldLeslieKnopeDo sorry to hear you have had a stay in hospital . Hope the meds kick in soon !

Take it easy Leslie

Thank you all. I hope you're having a good Friday!

VLCos how are you getting on?

I'm lazing about in front of the telly recuperating :)

@WhatWouldLeslieKnopeDo
Ah good glad you are resting !
Had CT Tuesday was over with very quickly they said results in 2 weeks or so.
Colonoscopy Wednesday !
Glad to get it over with . Moving house week after so all a bit crazy !

Goodness quite a busy time! I'm glad you had the scan done. Fingers crossed for the results. And good luck with the colonoscopy :)

Thank you @WhatWouldLeslieKnopeDo I hope you are feeling a little better soon !

Yes good luck VLCos
Mine is not till near the end of July so feel like I have ages to wait-like you, I just want to get it all over and done with.
Take care everyone else

Hope you feel better soon Leslie
I have been feeling pretty tired after chemo this week and had a CT scan this afternoon. Have to wait about 10 days for the results which is going to be hard this time round as the results will be crucial for deciding on the next treatment steps. Have a good weekend all.

@charliebear78 thanks ! Soon comes round !
Have a great weekend everyone !

Thinking of you, Leslie. xxx

Hi. So back on the breast cancer rollercoaster this week. Have had a bit of a ride since March. Lumpectomy in early may with lymph nodes. Fortunately nodes are clear but margins weren't. Had second op two weeks ago for more margin. Got two bits of news this week. Cancer got sent to California for testing (yes, really!). And I don't need chemo so hurray! But, margins still not clear. That hit me hard. Looked into mastectomy and recon which are big, big, ops and had heebie jeebies. Decided on more margins - I have lots of nork! Of course surgery is slap bang on our holiday (fortunately camping in uk) so we are working on complicated to ing and froing manoeuvres.

Not sure what to do if these margins aren't clear. Dread to think. Started letrazole last night, fingers crossed for not too many side effects.

Best wishes to everyone also in the cancer theme park. My cancer, I have decided, is a rather laid back surfer dude (nor in Cali) who unfortunately has left some of his teenage mates behind in their bedrooms on their xboxes. He's also littered the place with dirty laundry.

sending good vibes your way Chewing

chewing everything crossed for your results. I hope you have some good distractions while you're waiting. And I hope that you feel better soon from the chemo

Flying sorry to hear it's been more of a nuisance than you'd hoped especially needing more surgery during your holiday. What a drag. I think amber shared some research about margins a while back. I'll see if I can find it. Will you be having radiotherapy? Great news that you won't need chemo :)

I hope everyone has a lovely weekend

Flying Omitting re-excision for focally positive margins after breast-conserving surgery does not impair disease-free and overall survival. This might be reassuring :) basically they concluded that not having clear margins isn't a disaster as long as people had appropriate radiotherapy (with huge thanks to amber for sharing this recently)

Chewing.. .sorry you're weary, and EVERYTHING crossed for your results.
Flying...your post made me giggle!! Love your laid back surfer dude cancer, reminded me to watch Pointbreak again!! Tho sorry about his teen mates...

Thank you for the info. Yes, I was wondering what the point of radiotherapy is if not to clear up the pesky bits. Feeling a bit wobbly about going back to work, which is daft. Just wondering if I can remember what to do!

Chewing - hope you get some respite from the anxiety.

I hope everyone had a good weekend

My infection seems to be clearing up, which is a relief. I hope they'll let me go ahead with chemo this week :)

VLCos good luck with your colonoscopy tomorrow!

Waving to everyone else and keeping my fingers firmly crossed for those awaiting results

I'm having the hysterectomy on Friday!!

It's been a real battle. The NHS has absolutely let me down on this - they've offered a 'holding' chemo until a date is available. My consultant was really unhappy about this - the laparascopy was done quickly so he could then follow up with the hysterectomy - and .. nothing...

It's been such a difficult week - I've been chasing Reading and Oxford, leaving messages that no-one replies to. It's been so stressful. No-one talking to me, no-one letting me know what's happening or when something is likely to happen.

Anyway. Thank goodness for private insurance is all I can say. But that doesn't help the next person behind me who doesn't have it...

I was about to reply on your thread, but will reply here instead :)

I'm sorry you've had such a frustrating week, but I'm glad you finally have a date! Will it be at the same hospital?

I've realised your local ish to me, but I think you're in a different trust.

Do you have a specialist nurse?

There's a list near the top here of things people have found useful to take to hospital. Though you probably already have a good idea after your last hospital stay. Most on here have had breast surgery, but a couple have had hysterectomies so hopefully someone will appear with useful advice :)

I'm assuming it'll be an open surgery? Not sure where exactly your incision will be, but my recommendation would be a small firm cushion to hold against your abdomen when you move. And heaven forbid if you have to sneeze or throw up. If you start to feel any nausea at all after the op tell them straight away and start antisickness meds. Don't wait and see if it gets better as it isn't worth the potential pain from throwing up with an abdominal incision.

Thanks Leslie - how are you feeling?
If by open surgery you mean cut right open, the answer is yes . They'll be taking out everything, plus looking at the liver and doing a scrape as well, so it'll be a large vertical incision.

I didn't feel sick after the laparascopy 2 weeks ago, so I'm assuming I'll be OK. But you're right, the thought of chucking up or sneezing is a little scary. I will try to find a cushion. Yes to the ear plugs too. After the 1st hospital stay, when I had the bonkers woman from India, I wouldn't be without them.

Oxford and Reading are different trusts, which is part of the problem. I have my chemo at Reading, and this is my 'main' hospital. Oxford is only for the operation. My onc nurse is at Reading. I don't have one at Oxford.

I did cry a number of times after coming round actually - about nothing in particular. I was surprised (and a bit at this but the nurse said it was normal, so it's good to read the note here about being emotional!

Yes lots of people do cry when they come round. I love anaesthetics and always wake up feeling really cheery. Though I did cry tears of joy once when they gave me toast

I'm in a different trust to both, but nearby and have had involvement from Oxford and RBH at various points :) thankfully I decided to have my surgery at my main hospital so avoided all this sort of palaver!

Yes sorry I meant open as in not laparoscopic. I felt like my insides were going to fall out at first. It's quite unnerving and that's why I liked having a pillow to hold against the wound when I stood up etc.

I was told you either cry or laugh after an anaesthetic. Weird isn't it? I want to be the one who laughs

@WhatWouldLeslieKnopeDo colonoscopy went fine. Consultant said it all looks OK but took some biopsies to be sure. Still awaiting CT results but it looks positive . Thanks for all your help and we encouragement !

I'm always terribly polite after an anaesthetic, haven't a clue what planet I'm on but insist on saying thank you to everyone apparently....