Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

Hello everyone :) I hope you don't mind me joining again? I have been a long term lurker since June when I first posted after finding a lump that had been classified as 'inconclusive' (even though GP, consultant and radiographer all assured me it was nothing to worry about!) I then had to have an MRI after they found another suspicious area, before having the lump and area removed for testing.

Well, it turns out the lump was a 1cm grade 3 ER/PR+ HER2- invasive cancer surrounded by an additional 1cm of high grade DCIS (nodes were clear). They didn't quite get a clear margin and wanted to operate to 'shave' the area, but I insisted on a double mastectomy and immediate reconstruction, which I had on 25th August.

I have recovered remarkably quickly from surgery and am now due to start the 1st of 4 FEC chemo sessions on Friday, which have been described as an insurance policy and only recommended due to my age (39) and grade of cancer.

I was in a pretty dark and terrified place last time I posted and it took me a while to feel anywhere near positive about the future. I am worried about the side effects of chemo but have been glued to this forum and have picked up lots of useful hints and tips!

Unfortunately I have nothing to offer by way of elephant stories or potato based hair styles, but I have had my hair cut short and died white blonde in preparation for chemo and my husband says I look like Malfoy from Harry Potter was not the look I was going for!!

Welcome Jo of course we don't mind you joining in :) we are (hopefully) not too cliquey. Anyone with any sort of cancer is welcome. Though nearly everyone has breast cancer so you are in good company!

Sorry to hear about your diagnosis and surgery. Good that you've recovered well :)

Easier said than done, but try not to worry too much about chemo side effects. It's generally doable. Most people feel a bit grim, but on a three week cycle you're likely to have at least a week of feeling reasonable. They can give you medications to counter almost any side effect you're likely to experience. And after your first cycle you'll have a better idea of what yo expect when so that you can plan accordingly (I'd recommend keeping a symptom diary).

minty that's good. It's not overly painful when they put the needle in. Just a bit of a pinch. It's no worse than a cannula.

My port is a bit wonky thanks to an overzealous nurse (the port is held in position under the skin by some stitches and they can break - not the end of the world, just means the port tilts slightly!). It now hurts a little more so I use the cream when I remember in time. It works amazingly - twice now I've had no idea they've put the needle in.

Done my injection and added another chocolate button to my mental IOU goodnight all, sleep well!

Evening all.
Jo I remember you posting previously. Good to hear that you have recovered well from surgery and I hope your chemo goes ok. I have had minimal side effects so far other than tiredness and hair loss. Your hair sounds good - I love Malfoy
My hair has been falling out rapidly in the last few days and now resembles a dandelion clock. I expect to go outside on a windy day and lose the lot!
I am due to have my 4th load of chemo tomorrow but that will depend on the bloods again. I won't get my hopes up too much.

Thank you for the reassurances Leslie and Chewing I have my new patient tour on Tuesday and think it will all seem a bit real then - I hope I escape with minimal SE's too, with 4 children I will try to carry on as much as normal although my husband is planning to take a couple of days off each cycle to help out.

Chewing My friend told me about a book called 'Crazy Sexy Cancer Tips' by a lady called Kris Carr. Apparently she recommends letting your hair blow away in the wind rather than falling on your pillow/in the shower. It's supposedly quite therapeutic although I'm not sure how much neighbours will feel about my hair blowing all over their washing

Good morning all.
Hello Joandthetribe . As the other lacies will have told you, chemo, though annoying, is doable. Here is hoping you have minimal SEs! The idea of letting one's hair blow away with the wind is a rather quirky one imagine the complaints fro. The neighbours about the lady next door shedding all over our rose bushes
Have a good day lacies.

Funny you should say that jo. We went to Dorset for a weekend just before my second chemo. We walked along the cliff (where they filmed Broadchurch) and it was quite breezy. DH was downwind of me and kept getting clobbered by bunches of flying hair! I also found an amazing hat shop in Lyme Regis and was trying on hats ready for being bald and ended up leaving trails of hair in each one

I cut my hair off in stages, well, my dad did. I had a bob for a while, then a short tufty crop and now it is shaved as closely as possible. We did it outside so that it was easier to clean up, and then the birds/mice might be able to use it for their nests! :) but I can't imagine just sitting around waiting for it to blow away

Jo how old are your children? I don't have any, but other posters have had children of pretty much every age. The youngest has been a few weeks old. So I'm sure someone will have advice on how to cope with different ages :) most people have managed to carry on relatively normally most of the time, but it would definitely be useful to have help in your rough days. You'll probably find that friends and parents at school will offer to help out once they know what's going on :)

I hope everyone is having a good day. I'm trying to sort out my medical appointments for the week. Because of last week's disruption I now have various conflicting appointments and still haven't had any word from my oncologist about whether I'm having chemo this week

Afternoon lacies.
My chemo has been delayed for a week again. It was going to go ahead until I mentioned a sore finger which appears to have an infection. Consultant then decided they wouldn't risk chemo until the neutrophils are higher and ab's have cleared it up. My fault for chewing my nails when stressed
Hope you are all having a good day.

Sorry to hear that chewing it's probably for the best, but still frustrating!

Thanks Leslie. Next time round I am having one of the booster injections (can't remember what it's called) to hopefully avoid any future delays.

Oh dear chewing how frustrating!

grrr chewing I don't understand why you haven't had them before now anyway? They were compulsory in my unit! Filgrastim? (sp?) it's GCSF (which I think is growth colony stimulating factor)
Hope your finger gets better!

So it is October all over again The month where everywhere you look or turn you are bombarded with pink ...of course bringing about awareness is good, but it does get a bit too "superficial" at times and somehow trivialises breast cancer as a disease or worse seems to glamorises it. I dunno maybe I am a just a grumpy old Tamoxifen popping lacy ...

I love the romantic notiom of allowing my hair to blow everywhere and for small woodland creatures to make nests out of it, but the realities of living in a terraced town house with a tiny garden means it is more likely to be picked up by hoodies or found clogging up a drainpipe . I laughed at your description of your hair blowing into your husband's face mintyneb

Leslie my kids are 16,14,9 and 2. The 2 year old hasn't a clue what is going on and just keeps asking to see my 'new boobies' in inappropriate places. The 2 teenagers have taken it all in their stride and are incredibly strong, but my 9 year old is very emotional about the thought of me losing my hair. It has been her comfort since she was a tiny baby, and I think physical changes like that make it all much more real. I'm sure we'll find a way to make it as okay as possible - she has enjoyed looking at wigs with me.

Chewing so frustrating for you. I have created a count down calender to when my chemo finishes but must remember to be realistic that it might not always go to plan.

...and royalmama I totally agree about the sea of pink being a bit superficial and nauseous, but appreciate the sentiment. My friend who had BC last year said it should be coloured shitty brown, not pink!

The dr called me this afternoon so I do have Paget's and some dcis so even worse than I thought I'm devastated I know I was waiting for the result but I was really hoping it would come back negative, I'm going to see the dr tomorrow Again I presume to arrange surgery I dunno if I want to cry or scream or drink whiskey, he said its very treatable but at end of the day it's still cancer.

bobdylannumber1 it is completely shocking and terrifying to be given a cancer diagnosis, isn't it? You are exactly where I was 4 months ago - I actually didn't know how I would get from one day to the next and wanted to lay in my bed, with my duvet over my head and hope that it all went away. I cried at least once an hour, screamed in the shower, couldn't eat and had permanent palpitations.

However, as anyone who has had a cancer diagnosis will tell you - this is the very worst bit. As soon as you know what you are dealing with, have a treatment plan and start trusting what your medical team tell you, you will feel better - I promise. Bit by bit, day by day.

In the meantime do whatever feels good. Cry, laugh, drink whiskey, whatever! I found planning nice things with my lovely family and best friends to be a great tonic.

Be kind to yourself x

bobdylan sorry you had not so great news just get through the next few days however you need to. As Jo says, you will feel better when you know what they're going to do about it :)

I didn't know anything about Paget's disease so I've just looked it up on the Macmillan website. DCIS is indeed highly treatable. Quite a few on here have had it, though some have also had bits of invasive cancer which has affected their treatment. Hopefully some of them will be on shortly. But treatment seems to be mostly surgery, sometimes radiotherapy too.

royal you're not being grumpy. I'm afraid I think the whole thing is a load of bollocks. No way would a men's cancer be trivialised like this (I know a few men get breast cancer too, which just makes the whole pink thing even worse!). The worst bit is the inevitable celebrity photo shoots in skimpy underwear, which are tacky and insensitive. Breast cancer is no sexier or girlier than any other cancer. I have never felt so unattractive in all my life and I imagine lots of breast cancer patients feel the same. I read a fantastic article about it once. I will see if I can find it!

Jo sorry your 9 year old is struggling. Though it's good she is open about it so you can help her. I hope wig shopping cheers her up :)

Goodnight everyone. I've done my injection and awarded myself a Star Wars sticker!

chewing glad you'll be getting the injections next time :)

Signing in. Will read up when things are calmer.

I hope things calm down soon Exit

bob I'm sorry you got bad news. It will take time to sink in and no emotional response is a bad or wrong response right now. Anger tends to be my default response to things these days. Once you've got your plan you'll be able to grasp back some sense of control again

jo my DD was 7 when I was first diagnosed. It was the hair loss she cried the most over but she chose my scarves (never got a wig) and helped me pick what to wear each day. When I did get my hair shaved I warned her beforehand and she got particularly upset. I told her gently that I would still be me, that I wasn't an alien. Well that just set her off.....I know mummy, I could paint your head green and stick on some googly eyes on stalks! She seemed to cope fine after that

leslie I'm starting to picture your house as a little treasure trove of stickers, sparkles and chocolate buttons . Well done with the injections

Bob. Very best of luck for today. I know you are in shock at the moment, but you will continue to breath and take one step after another; and somehow you will get through today.

Chewing. I'm really cross on your behalf that they've postponed chemo again. I don't know much about chemo yet, but I thought the injections to boost the blood count were standard. You must be frustrated.
Have they managed to define your cancer yet re secondary/primary ?

Has visions of Leslie gifting herself a whole array of stuff with each injection and occupying a little nesting corner of her home surrounded by rainbows, glitter, chocolate, unicorns and bubblewrap.

Waves to all the other Lacies, hope today is as good as it can be.

Morning all
Bob sorry to hear your news but as others have said a treatment plan helps to feel in control
Tutti I am a bit frustrated but it seems to be par for the course with me . I was told that they are both primary but will seek further clarification when I next see the onc. The plan seems to change every time I see him - the joys of being 'different' .
I am now picturing Leslie in a little cocoon made from lacies hair of all different textures and hues

chewing sorry that you're having such problems getting your chemo. Like others, I thought that blood boosting jabs were quite common and I'm surprised your team have let things go on for so long. I hope you can get things moving soon (isn't it a strange world when you wish them luck to get poisoned sooner rather than later?!)

I was lucky first time round that my bloods were always ok. Last week it was because one of the liver tests was too high that they wouldn't start me on chemo. Can't remember exactly what they were testing but the number should have been below 40, mine was 128! No idea what I can do to get it down other than eat healthily and avoid alcohol. Shame really as there is a fundraising fashion show at DDs school tonight with nibbles and bubbles