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

988 replies

WhatWouldLeslieKnopeDo · 16/05/2017 00:50

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 Flowers

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 Star

The previous thread is here

OP posts:
Joesmummy2 · 20/06/2017 14:35

Hi Leslie, he's 2.5 so thankfully has no idea anything is wrong at present and hoping to keep it that way as long as possible. Off to hospital again in a bit for injection following chemo yesterday, so many injections, appointments to remember I'm struggling to keep track of it all, luckily off work for a bit so bit easier to manage at present.
How you're doing today?

WhatWouldLeslieKnopeDo · 20/06/2017 17:01

Ah that's good Joesmummy :) good luck with the injection. It's a pain keeping track of it all. My hospital sends text reminders now which is handy!

I'm melting a little Grin how about you?

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WhatWouldLeslieKnopeDo · 20/06/2017 17:02

Sorry, just seen the time so you'd hopefully had the injection by now. I hope it wasn't painful!

OP posts:
Joesmummy2 · 20/06/2017 21:37

Yes all fine and very quick thankfully, if only all the procedures were the same!
Hope you're feeling ok and heatwave not affecting too much 😀

WhatWouldLeslieKnopeDo · 21/06/2017 08:55

Good morning lacies

I hope everyone slept well

Joesmummy how are you feeling today? I'm quite enjoying the heatwave overall :)

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FlippyNeck · 21/06/2017 11:36

Just checking in - hello, and hope everyone survived the heatwave!

Chewing, two fingers up at that initial prognosis eh?! Long may it continue!

Freddie, yes, Moo Goo was recommended by another of the lacies - the udder cream. I used lots of it, and my skin held up well. I also used 99% pure aloe vera (from Holland & Barrett) when my skin was hot and itchy. I have a few pink patches now, but it's definitely all getting better, and my throat is not too bad either. I sent you a PM re metformin and statins, are you still considering taking them?

Welcome Joesmummy - sorry that you're joining us, hope you're not suffering chemo side effects too badly.

Not much going on with me at the moment - thank goodness! I'm not suffering too badly on zolodex and letrozole apart from the rubbish hot flushes and I'm definitely pretty creaky, especially in the mornings. I'm trying to get more exercise, my fitness level and stamina is appalling! More good days than bad now, although I do get hit by a wall of tiredness most afternoons.

Wave to everyone!

Joesmummy2 · 21/06/2017 20:30

Hi all, wow today was a scorcher! Feeling ok so far thankfully but heat is knocking me slightly so very glad it's set to cool a bit tomorrow!
Having my hair cut short tomorrow in advance of wig fitting next week, it's the bit I've been dreading the most actually as nurse advised hair will start to go in a few weeks 😭 still hopefully not forever and a chance to rock a new look for a while!
Hope you're all coping with heat ok and it's been lovely to connect with you, I'll let you know how the short hair feels!

WhatWouldLeslieKnopeDo · 22/06/2017 21:48

Much cooler today here. I hope everyone has had some relief from the heat.

Flippy I hope your energy levels improve soon :) good luck with the exercise!

Joesmummy how's your new haircut?

Waving to everyone. No chemo for me today as I needed a blood transfusion. I'll have chemo tomorrow instead.

OP posts:
Isadora2007 · 23/06/2017 10:49

No sunshine here in rainy Scotland...

Hope all lovely lacies are coping in the heat if you're lucky enough to have it.

Not much going on here but I now have a date to meet with surgeon (27/07) to discuss my mastectomy. I'm still undecided as yet whether to do the full reconstruction with own tissue or no reconstruction at all. That's me- all or nothing! 😂
I'm worried I end up with a major op and then not happy with the resulting fake boobs and lumpy scarred but still fat belly...
but I'm equally scared I have the boobs off completely and then hate my body for the rest of my (hopefully long and cancer free) life...

And damn, I love the feelings my boobs allow me to experience...and I'm struggling to know that I won't have them any more. Even with fake boobs I won't have that pleasure any more. Selfish, I know...

AND I'm even thinking am I being stupid having this risk reducing surgery and making the choice to lose my boobs. Maybe I should be just having the tests and scans and hoping for the best. But how could I live with that choice if I develop BC a few years down the line... ???

Sorry for the self indulgent post. It helps to get it all out. 💕

Magicme1 · 23/06/2017 19:03

Hello all, hope everyone is set for a good weekend, whatever you're doing.
minty my lipofil was a bit of a let down (literally) it didn't really take, but did replace some fat necrosis that they took at the same time, I'm waiting for a date for a second attempt to fill the hollow I have just above the right boob, feel free to ask anything though that I could help with.
My good news is that the lumps I found a fortnight ago turned out to be oil cysts, quite common after Lipo transfer apparently .
Joesmummy I'm new here too but was in your shoes a few years ago , diagnosed at 44 with very young dc, getting my hair cut and wig fitted. 3yrs later my hair is now very trendy and just been on our first proper holiday since the diagnosis and more importantly I'm two and a half years breast cancer free! Good luck with it all x

WhatWouldLeslieKnopeDo · 24/06/2017 08:00

Magicme that's really great news about the lumps Star

Isadora it's not self indulgent at all, but sorry I don't really have any useful experience. Is it definitely now or never, or could you have a reconstruction at a later date if you change your mind?

Morning all. Feeling a bit bleurgh after chemo yesterday.

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Joesmummy2 · 24/06/2017 10:21

Morning everyone. Haircut went well and I love it, shame it won't be around for long! Wig fitting on Tuesday and then hopefully back to work between chemo cycles if all goes well!
Magicme1 so good to read your post and really helps to hear others experiences and that the hair is back and trendy, plus I like the sound of a holiday as we had to cancel ours due to diagnosis 😩
Having a bit of a rest with some tea and toast in front of tv whilst DS at football class this morning, not been sleeping so well and he's up with the birds most mornings so a little tired today but on the whole chemo not knocked me as much as I'd thought so fingers crossed continues but taking each one as it comes!
Wishing you all a restful and enjoyable weekend and thanks again for welcoming me onto the thread, I'll no doubt have more questions and comments during this journey but helps to know there are others out there, take care all x

Joesmummy2 · 24/06/2017 10:22

Leslie sorry to hear you're feeling not so good, hoping you get a chance to recharge and put your feet up x

WhatWouldLeslieKnopeDo · 24/06/2017 14:18

I hope you get to enjoy your haircut for a little while Joesmummy :) and I hope you got a good rest this morning!

I realised why I perhaps felt a bit rougher than usual as I only took one steroid tablet this morning instead of two. Not like I'm new to this Confused oops!

OP posts:
freddiemercury · 25/06/2017 00:34

hello everyone.....
Leslie, sorry you're feeling grim....horrid for you. count those steroids...!!
Joesmummy - i love your positivity, trendy haircut..yay. And at least you know that when your hair grows back, that short suits you....
Chewing - I don't think I'd taken in that they'd given you six months..blimey....I'm so very glad you've proved them wrong and long may that continue....just shows how very individual this disease is
Flippy....I've got the moo goo....I've got horrible peeling nipples, makes me feel vaguely sick looking at them, and my armpit is bad too....eeeeeek! But slathering on the cream now. I did call up the people about the statins, metformin etc. and will do it I think, but at the moment I feel swamped with work, post radio fatigue, the small boys etc etc and don't have the energy to get all the paperwork. Though my gp has advised to take aspirin so I'm doing that and tamoxifen. Do you mind me asking why you're on zolodex and the lestro thingy rather than tamoxifen...am i missing a trick? I think we're similar ages......though realise that doesn't count for much!
magicme - delighted your lumps are nothing to worry about
Isadora, please accept my apologies as I dont know your full story...but I don't think it's selfish to want to keep your breasts and all the pleasure that comes with them....they are part of you...why wouldn't you still want to have them. When I first found my lump, i started off begging surgeon for a mastectomy, I just wanted to be rid of the 'thing' that gave me cancer....she refused and did lumpectomy> i have to admit now that I'm delighted to still have my boobs, and I don't think that makes me selfish. So please don't beat yourself up about not wanting to go ahead particularly....it's understandable.....
And to everyone else lots of love and hugs...hope you are as well as can be expected....xx

freddiemercury · 25/06/2017 00:47

And on a completely different note...I have a question for you and please be honest.
As some of you know I'm a journalist, I write for the popular press (my articles are less waffley and have less typos...er I hope!).
Now the other day I went to my GP and asked whether I was missing something as I felt really ok with all of the cancer stuff. and he said 'no' and added that for the majority of women it really was very doable. I'm not going to lie and say it was a stroll in the park, but physically it was ok and mentally once the intial tests were done, it was ok too.
But when I was diagnosed, i was in pieces. And i desperately googled for 'happy' stories. The person that made me feel a million times better was jennifer saunders, who pretty much said that yes, she'd had cancer, she'd had the treatment and put it behind her. She inspired me to believe that it doesn't have to completely change your life, that you can get through it and then carry on as you were.
I was thinking about pitching an article saying similar stuff. Ie yes, it was a horrible shock. But actually once i was on my way and found a surgeon i liked and trusted, that it was fine. That the lumpectomy really wasn't a difficult operation. That radiotherapy while knackering and makes your nipples peel, is doable. And I wondered whether it would set some women's minds at rest.
BUT....I recognise I didn't need chemotherapy, so in a way that has cut out a whole horrendous experience that a lot of women need to endure. But then again a lot of breast cancer patients don't have chemo either.
I simply can't decide. On the one hand I'd like to take out some of the fear factor for women, show pix of my breasts, so they can see that they look pretty much the same (er once that nipple stops peeling...I'm faintly obsessed by that) and you'd be hard pressed to see a scar etc.
But on the other hand, I realise i'm far from out of the woods, it may come back at any time. AND more importantly i don't want to belittle a disease that can be completely horrific for some women.
So any thoughts would be gratefully appreciated. But er please don't get cross, as I really do want to write this to help. Any money i make I would donate to cancer research....

JoandtheTribe · 25/06/2017 09:01

Hey Freddie

I'm completely with you on this!
I personally have a tenancy to focus on the negative and dwell on the worst possible possible outcome - which is why when I was first going through the diagnosis process I Googled like crazy and convinced myself I was going to die before the year was out. When I found the calm and sensible advice from amber on this thread it was so refreshing and reassuring and started me on the journey to where I am now - quite positive about the future.

I write a blog and recently had some very tasteful pictures taken of my mastectomy scars and reconstruction (because I haven't seen many pictures of reconstructed breasts). My original post was going to be about being body positive, but I've actually decided I'm going to write a post very similar to the one you're describing and share my pictures

  • reassuring people that even when your worst nightmare comes true, you can get through it and come out the other side stronger and (dare I say it?) happier than before.

I did have chemo (albeit only 3 cycles) and apart from being very ill on the last one, found that even chemo wasn't as bad as I had imagined it to be.

I think any article would need to be mindful of the fact that not all people have such a good outcome or experience (which I'm sure you would) but YES! More positive stories definitley needed I think Grin

Jo x

chewingawasp · 25/06/2017 14:31

Hiya freddie Yes, a positive story would be good. I have gone through 3 different types of chemo now and have had minimal side effects with all. My consultant was expecting to stop my latest chemo as he thought my body wouldn't tolerate it very well. My next session is tomorrow - bring it on.
The drawback to feeling so well is that I have had people asking me if I really am terminally I'll or am I kidding them Shock
Happy to contribute to any articles Smile

Hope everyone has had a good weekend. I've been down south for a few days and am now on the train heading home for some rest.

TwitterQueen1 · 25/06/2017 21:30

Freddie I get where you're coming from, but from someone who is in the early stages of the 'journey', I have to say it is still horrendous. Don't you think that people's attitudes depend very much on where they are in the whole treatment process?

I'm a single parent (though DCs are older / uni age) so they can and do look after me, but I'm finding the whole thing petrifying and horrifying.

I do agree that we cancer sufferers can and should do more to make cancer less scary for those who don't have it, or might have it, but my journey (advanced ovarian cancer) is not an easy one nor a pleasant one.

So I guess I'm saying do go ahead with the article (not that you need my permission!) but don't minimise or gloss over stuff. It's absolutely fucking shit.

WhatWouldLeslieKnopeDo · 25/06/2017 22:12

freddie did you see any of the videos that Victoria Derbyshire did following her breast cancer diagnosis? They're probably on YouTube I should think. I thought they were very good, in general. But obviously I have bowel cancer so I can't be entirely sure if they were an accurate depiction of the typical stage I-III breast cancer "journey". I shared them with some friends and they reacted really negatively though.

I think people can be very defensive about it. It's a fine line to tread.

It sounds like a good article to write though. I have been pondering it since your post last night. I was a bit too muddled to reply then, but a few points... still a bit muddled, but hopefully less so!

As long as you are only writing about your personal experience then I don't think you could be accused of belittling anyone else's experience. You aren't saying all women with breast cancer will feel this way. Just how it has been for you so far.

I think it's very important to acknowledge that you're never really out of the woods, that there's no such thing as a cure etc.

I don't think you're wrong for wanting to write about it. You're a writer. So writing may help you process it. Have you written anything about it at all yet?

My absolute pet hate is any kind of cancer smuggery. We all cope in our own way. But I really cannot stand when people seem to think they've "beaten" cancer through some sort of strength of character. All those naff slogans about "cancer picking the wrong person to mess with". I've seen cancer diminish and kill far too many strong, fantastic, funny, clever, kind women. Cancer isn't something that we beat. If anything beats it, it is modern medicine.

I felt a similar way to you after my first diagnosis. My prognosis wasn't excellent. It was stage IIIc when it was first diagnosed and I needed major surgery and chemo. The chemo gave me almost permanent nausea and diarrhoea. But I wrote it off as a six month investment in hopefully having a long, happy, healthy life. Obviously that didn't work out as I hoped, but it was three and a half years before the cancer reared its head again, so I guess it did quite a good job :)

Anyway, it was shit but I got through it. It was doable. It wasn't the disaster that lots of people seemed to think. I didn't cry or wail or anything very much. People thought I was weird for that. But I think my feelings are just as valid as anyone else's, and I wish I'd been more secure about it at the time.

Stage IV is a different kettle of fish entirely, of course. And I think it's worth acknowledging that because it rarely gets a mention except in a hugely terrifying, taboo sort of way. We haven't made much progress in talking about incurable illness or terminal illness or death openly yet. But even stage IV isn't (always) the nightmare it once was. Especially breast cancer as lots of progress had been made recently. It's not just optimism to say new treatments are developing all the time, as they really are. And many of the treatments have manageable side effects.

I hope that hasn't been too rambly and unwelcome. I feel I should add I've felt this way for years now, ever since my diagnosis, so it's not some sort of new bitterness or anything Grin

I'd be very interested to read your article if you decide to go ahead, and of course if you don't mind losing your anonymity.

I hope your peely nipples improve soon! Flowers

Jo that sounds empowering

chewing wow! Hmm people can be so inconsiderate. I'm glad chemo isn't making you feel too rough. I hope you enjoyed your time down south. There seems to be some distinction between terminal cancer and incurable, though it's not very official. But given your original prognosis I would imagine that would fall under "terminal" anyway. Maybe you'll be relegated to "just" incurable for now Smile

Twitter I'm sorry you are still struggling, though it's completely understandable given your personal situation. You're absolutely right that everyone's experience is individual and obviously there is no comparison to be made between someone with "curable" cancer and someone with incurable cancer. And it depends on so many other factors too.

Whilst I will always regret in some ways that I've never had children, I'm also incredibly grateful that I do not have that additional pain and fear.

I will stop there as this is getting very long! I hope everyone has had a reasonable weekend, and love to all who need it whether posting or lurking or whatever's going on with you.

OP posts:
WhatWouldLeslieKnopeDo · 25/06/2017 23:09

A few follow up notes now I've read that back...

Not just breast cancer that's constantly improving - lots of the big ones e.g. bowel, prostate, some leukaemia - was trying to stay on point. Others still have shocking success rates e.g. pancreatic, but again not really relevant.

Hope I didn't come across as scaremongering. It's always hard to get the balance right. Especially as we have no idea who is reading this and I don't want to upset or panic anyone. But then again I don't feel we do ourselves any favours by ignoring reality. We all know there's a risk of recurrence, but in many, many cases those risks are very small. Even when they're higher it is perfectly possible to get on with life. And then even if it has spread when diagnosed or comes back later, it's still possible to live a happy life. Not what any of us would choose, but happy nonetheless.

Goodnight lacies. I sincerely hope I haven't offended anyone Flowers

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TwitterQueen1 · 26/06/2017 09:12

Wise words as always, Leslie

It's difficult to define 'Struggling'. Everyone says how well I'm coping, how well I look, how amazing I am blah blah blah.

But was I scared about the laparoscopy this week? Of course I was. Will they put me under properly, will I wake up at all, will it hurt much, what will the scars look like, etc etc.

That's what I mean about the 'shit' bit. Having to think about all these things that you wouldn't normally, eg:

How do I stop my nails falling out through the chemo? If I cut them will I pull them out? How can I make my veins stronger so they don't collapse every time a needle goes near them? When will my ears stop hurting? Is the neuropathy getting worse? What do I do about the nerve damage in my hand from the cannula attempts?

And then the big stuff, which I won't go into here, but it begins with, how much time do I have left and how will the girls cope without me...

It's easy to be positive when you're out the other side.

pepperrabbit · 26/06/2017 09:21

Morning all, interesting discussion about positivity and cancer. So many people have commented about my "attitude" and being positive making such a difference which I suspect is a load of bollocks.
For me, it was coping mentally that threw me. Cancer v control freak wasn't pretty, the guilt for my kids, my husband and my family for what they went through. The bit where I was glad it was me, suppose it had been one of those precious people? And feeling helpless, totally in the hands of medicine, trusting people with my life literally after being the one who kept everything and everyone going. Surgery, chemo and rads and the ongoing meds are nothing compared to that particular "battle" for me.
I had a lot of counselling to get through, am on anti depressants (which are magic!) and have a constant niggling fear of it returning.
But - boy am I more confident, outgoing, and relaxed about the small stuff now. Work is so much easier with a cancer perspective added in. I take nothing for granted (well, mostly).
The recalibration of my "do I give a shit?-ometer" has been brilliant.
No idea if that helps!

pepperrabbit · 26/06/2017 09:25

twitter a year after chemo some mornings (2 a week?) I still wake up with no feeling at all in my right hand.
And my right boob still has a faint blue tint at 15 months post WLE...
I had my 6 monthly zoledronic acid on Friday, wiped me out for 24 hours or so but fine now. I made the mistake of googling (I know!) the codes on my blood test form and found that a ca - 15 3 was a tumour marker test. Completely threw me, which was a surprise Hmm
The results were ok, a score of 10 and apparently 0-30 is normal, but that whole, waiting for results feeling was horrible again.

usernotfound0000 · 27/06/2017 12:49

Hi everyone, sorry for not reporting back.

I had my appointment 2 weeks ago, ultrasound lady was talking me through it whilst doing it and said everything looked normal. Anyway,, the consultant then said they'd found a lump (not even the one I'd gone about) and he was sure it was nothing but they would do a biopsy just to be sure. Appointment booked for a telephone call to get the results 2 weeks later.

Cut to today, appointment was this morning (no time, just sometime AM) no call. Just phoned outpatients to be told that the hospital had cancelled my appointment as I need to go back. Appointment is next week.

What else would I be going back for other than bad news?