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CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

983 replies

WhatWouldLeslieKnopeDo · 31/12/2016 20:23

Star Happy New Year! Star may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

OP posts:
chewingawasp · 26/01/2017 12:12

Afternoon all Smile
mrsrhod I am not feeling too bad today thanks. Been to have bloods taken ready for chemo next week. This chemo is not as strong as the first line chemicals were so hopefully SE's will be minimal again. Have got my will and bank accounts sorted but still have a fair bit of other admin to do. Keeps me busy I suppose Hmm
It's freezing here so I hope everyone is wrapped up warm today.

royalmama · 26/01/2017 12:37

Chewing glad to read that you are comfy and that the chemo is being kind to you.
Mrs, your poor DH! He will be glad to come home for sure after that drama.

rocket74 · 26/01/2017 19:17

Evening all! Hope everyone has had a good or comfortable day.
I've just finished packing my little case for hospital tomorrow for my mastectomy and lymph nodes removal. I think my head is ok about it all but then sometimes I just dip and start crying about the fucking unfairness of it all.
Been a busy week - got a cold, cough and a temp so was worried I had an infection or that surgery would be delayed. But apparently I'd need to be really really ill to justify any delay as it's an urgent operation.

This time tomorrow my boob will be gone.

Chewing been thinking about you a lot. Hope your treatment is going well.

WhatWouldLeslieKnopeDo · 26/01/2017 21:35

rocket good luck tomorrow Flowers

Mysillydog there's lots of videos on YouTube to help you learn. Also some very helpful posters in the Arts and crafts and Woolly Hugs topics :) I'm glad the knitted knickers are comfy

wee don't be afraid to chase sooner if you're anxious. I hope they get back to you soon of their own accord

pepper I'm glad it went well

mrsrhod oh that doesn't sound much fun. I was imagining it being hot but I suppose it's winter even in California Grin

chewing glad you're feeling alright. And well done on all your admin. It's rather a grim task. I've been putting off my will, but I've no real assets and I've made it clear everything is going to my sister. I ought to make it official though. We can't do much to prevent their pain and sadness but at least if the admin is straightforward that will help a bit Flowers

Chemo today. Quite tired. I'm getting a blood transfusion next week so hopefully that will perk me up :) waving to everyone!

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pepperrabbit · 26/01/2017 21:59

Rocket good luck tomorrow, I hope it goes well.
The whole thing is unfair, I just try to think that my kids don't care (or possibly notice) what my body looks like, and having all the treatment gives me the best chance of being here with them. Then I mutter to myself in the shower about the scars Hmm
Chewing I'm glad the side effects are tolerable, Leslie I hope you feel better.
Waves to everyone else .

javabean34 · 26/01/2017 22:22

Best of luck with the surgery, rocket. Hope you get to go home soon after.

chewing and leslie, how wonderful to hear about your woolly hugs, they are well deserved!

I've been quietly recovering from my surgery last month, but now dreading getting the results of my gene tests next Friday. I had signed up for a research study where they look for mutations in a bunch of different cancer genes from a blood sample taken the day before my op.

Now wishing I hadn't. I might soon be faced with more decisions like prophylactic mastectomy on the other side -- can't help but think the worst.

Flowers and Wine for everyone, it's been a tough January.

chewingawasp · 26/01/2017 22:32

rocket best of luck for tomorrow Flowers
java fingers crossed for next week. It has indeed been a grim January Sad
weebarra you are much more patient than I would be.
Night lacies.

royalmama · 27/01/2017 06:29

Good morning all.
Rocket wanted to wish you all the best today. I hope your surgery goes as well as can be, that your revovery is good and that you are surrounded with supportive and helpful people. Flowers

ArgyMargy · 27/01/2017 07:32

Thinking of you today rocket Flowers

UnbornMortificado · 27/01/2017 07:43

Hope you don't mind but I just wanted to say how helpful I've found this thread Flowers

royalmama · 27/01/2017 10:15

UnbornMortificado hello and you are always welcome and we hardly mind that you have found the thread helpful:) as all of us here find it...it is the whole purpose behind it. All credit goes to those who set up, Leslie and co.

mintyneb · 27/01/2017 12:42

Good luck with surgery rocket. pepper thanks to my surgery I have a curved scar from hip to hip and a large round scar on my reconstructed breast. DD says it looks like I have a happy face on my body - "even if you're feeling sad your body will always be happy" - oh to be 9 years old again!

chewing glad the chemo is being kind so far, I hope it stays that way.

leslie hope chemo goes well today

java think I would like to have signed up to some research, would love to know why I've had BC twice and to remove the worry that I'm just going to get it on the other side at some point. But you're right, any waiting for results is stressful

UnbornMortificado · 27/01/2017 16:22

Royal it's a relative not me.

I think as much as I can symapathise/empathise it's impossible to know how she's feeling and what she's going through.

Mysillydog · 27/01/2017 20:07

I hope your surgery went ok today rocket. I can't remember if you had recon. There's advantages and disadvantages to both.

I had my routine mammo and have been called back. I suspect it's because of the image quality but I haven't managed to get hold of anyone to ask. The radiographer did say that is usually why people get recalled, I just wish the person leaving the message had said why I was being asked to come in again. I have no worrying lumps anyway.

WhatWouldLeslieKnopeDo · 27/01/2017 20:31

Mysillydog fingers crossed for poor image quality. (Doesn't cancer leave us wishing for strange things sometimes?!) Though it would have been nice if someone had called and explained rather than leaving you wondering

rocket I hope surgery went smoothly and that you are recovering well Flowers

Unborn good that the thread has helped. That's what we are here for! :) I think, like so many things, it's something you can only understand when you have been through it. I even noticed a huge difference after my secondary diagnosis last year. I thought I had some idea from people's posts on here what it must feel like, and from having had a primary cancer diagnosis a few years previously, but it was a totally different kettle of fish. The main thing is to try and support your relative as best you can and to let them open up to you if they'd like Flowers be kind to yourself too as it's difficult for family and friends too. Try to find someone (not the relative with cancer) to open up to about it, if you haven't already and feel you need to

minty I like the idea of your smiling body :) DD sounds wise. My scars don't really look like anything. My main one used to look like one of those fake Halloween scars before the staple marks faded Grin and someone at Pilates once asked me if I had a third nipple?! It was just my little drain scar Hmm

royal I didn't start the fire, as it were. The threads had been going a couple of years I think when I joined! Smile

java knowledge is power, I reckon. Scary too. But you will presumably receive guidance before you have to make any decisions, if there are any decisions to make. You're doing a really great thing by taking part in the research :) good luck with your results appointment. It's natural to assume the worst so I shall hope for the best on your behalf!

pepper I'm sure your kids don't mind because you're their mum and they're happy to have you, scars and all. But it's not always easy I'm sure. I can't pretend to fully understand as my surgery didn't really make much difference to my appearance.

I have wonky love handles as they had to yank up the skin/muscle/flab from my hip to close one of my incisions. But it's not really that noticeable and would be less so if I lost the love handles. My scars aren't usually visible. And actually I sometimes find myself absentmindedly stroking them. They, along with the chemo, gave me three and a half years cancer free, and I feel like they are just part of me now. But on the other hand I'm quite resentful of my internal alterations!

I'm rambling away. I hope everyone has a relaxing weekend. I'm really pleased as I went out this morning for the first non-medical outing in a fortnight :)

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ArgyMargy · 28/01/2017 10:38

Good morning lacies I hope you are all having the best possible day. Wishing rocket a speedy recovery and Leslie it's great to hear you've been out & about!

I've planned my photoshoot with a friend of a friend who completely understood what I'm trying to do. I'm not usually so confident in this way so feeling pretty pleased with myself. I'll let you know how it turns out!!

Lymph node biopsy last Friday - armpit is still sore. I think it's because I've totally overdone things in the last week (against nurse advice yes stupid I know) but just hoping it's not infected. Results next week along with setting the date for mastectomy.

It's a beautiful day here after rain in the night - hopefully also sunny wherever you all are.

WhatWouldLeslieKnopeDo · 28/01/2017 10:52

Argy that's great about the photo shoot - is it today? Good luck whenever it is. I hope you are happy with the results :)

It is beautifully sunny here too.

Definitely try not to overdo it anymore with your armpit. I know it's a pain being restricted, but far better than ending up with complications and having to go back to hospital etc Flowers fingers crossed for the results next week!

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CoffeeDiamonds · 28/01/2017 11:28

Thank you to Sunnyhills for directing me here.

I had treatment for breast cancer 10 years ago and have had regular checkups - annual MRI scans, ultra sounds, mammograms etc.

I have been told I'll receive check ups for at least another 5 years - into my 50s.

For the first time ever, following my MRI scan a week ago, I've been called back in. A nurse rang me yesterday with an appointment for Monday.

I am ok (as much as I can be!) with the thought of the cancer returning but I HATE being in limbo.

Can anyone tell me - honestly - why I might have been called in ?

lookingforbaubles · 28/01/2017 13:12

coffee i too had the friday afternoon phone call regarding a routine scan

whilst it was a shock - i was impressed at how the 'system' works, more scans, appointment with a great consultant all in a matter of days

bottom line for me is i was very lucky to have my kidney issue picked up early - its probably saved my life

what ever they think they have seen, they can now investigate - being in the system is a good place to be

WhatWouldLeslieKnopeDo · 28/01/2017 13:25

Hi Coffee

It could be so many different things. If you read back a bit royalmama was called in for extra tests after a scan, but then they couldn't find anything to test! It might just be some sort of medical oddity. Most of us have something weird and they're more common as you get older, I think.

I hope that you get whatever tests are needed as quickly as possible, and hopefully it will turn out to be something harmless Flowers

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CoffeeDiamonds · 28/01/2017 18:14

Thank you.

So it's clear that they have seen something isn't it. They're not calling me to tell me it's all fine! They've never done that before.

I suppose I just have to hope it's something easily sorted. Fingers crossed!

WhatWouldLeslieKnopeDo · 28/01/2017 18:28

Yes, to be honest I imagine they have seen something. I think if it was just that the image hadn't come out then they would probably mention on the phone and re-book a scan. But every hospital has its own procedures. What exactly did the nurse say when she phoned? Was it definitely about the scan, or might they be just wanting to do a check up of some sort?

Before my recurrence I would have my scan then see my nurse a couple of weeks later for results and she would also check how I was doing generally.

It being something really doesn't necessarily mean cancer. I know of at least two people who have strange things on MRI scans and been monitored, but not been cancer. And then there was royalmama as I mentioned before. The chance of finding weird things and overtreating is actually one of the concerns about the type of monitoring they do in places like US, using full body scans just on the off chance. MRI scans are highly sensitive, but not so good at distinguishing between malignant and benign bits and bobs.

Sorry, I hope I wasn't too blunt Flowers

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CoffeeDiamonds · 28/01/2017 18:48

Leslie, I much prefer blunt. I have three brothers!!

Every year I have a routine breast examination followed immediately by an ultrasound if they see/feel anything concerning. I also have a mammogram. I speak to the consultant before I go home, who (usually!) tells me everything is clear but I will receive an appointment for an MRI.

I have never heard anything after the MRI. I just get an appointment through for the next year.

CoffeeDiamonds · 28/01/2017 18:51

I'm in the UK, in case that makes a difference.

I'll just have to wait now I suppose and hope that whatever they've seen is a) caught early or b) just further investigation.

UnbornMortificado · 28/01/2017 18:54

Lesley I went through a certain massive bereavement (not cancer related) Someone told me she knew how I felt as her dog had died the week before Shock

I'm a massive dog lover but I really regret not punching her tbh. I imagine it's equally galling people comparing past ailments to cancer.

I understand the word brave being banned but hope you don't mind me saying you all are awesome.