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

Thank you all so much for your thoughts - hugely appreciated!
I completely agree with what you all say...and especially that it's such an individual 'journey'. And i really really agree with you Leslie about 'beating' cancer.... it's a nonsense. Funnily enough my granny walked around with a lump the size of a tangerine in her breast for two years as she was too terrified to go to the doctor...this was a good 40 years ago now. She finally went, was diagnosed, had a mastectomy, radiotherapy, no tamoxifen as it wasn't around then...and lived until 91. When I spoke to my doctor about it, he said it probably never would have killed her and was contained in the breast...most importantly he said 'she was lucky'. And that's what I think, some people are lucky, some less so. but we ALL do our best and that's important.
I hardly told anyone about my diagnosis and still haven't. but watching people you love burst into tears because they are so frightened for you is terrible. And I think that people need to know that cancer treatment has come on in leaps and bounds - it's no longer necessarily a death sentence, treatment isn't so brutal..ie lop off her boob immediately etc (i can only speak for breast cancer obviously)...but truthfully physically the norovirus has been far worse than my cancer treatment. And mentally if I'd been able to read a lot more about women that have come through it and felt positive at the other end, I thikn i wouldn't have struggled so much at the beginning.
However I realise it's not the same for everyone.
And twitter queen, your post really made me think. I have read your other thread and you have received a mental and physical pummeling and I would never wish to dismiss your experiences. They DO happen and it is a sodding nightmare. But it isn't always like that. But please do accept my heartfelt hug/hand squeeze and admiration because whatever you think and feel, from an outsider you are coping incredibly well.
Leslie....you are always so wise and I've really taken note of your thoughts. and hugely appreciate you taking the time and effort to express them so articulately. And i hope you are feeling well today.
chewing - thank you too....and i would love to chat to you if you really would be interested....
joand the tribe....if you felt like sharing your blog with me or being in the article please do let me know....though this isn't a 'media request' as such...more that I think i'm going to write about me...but if anyone wants to be mentioned as a 'friend' and remain anonymous then that is fine....or um...more then that is too. but i think it's great that you're happy to show off your scars.
Pepper - I'm very with you on the guilt...before i was officially diagnosed (but post biopsy and I really did know from the way they acted) i gave my son a hug, lying in bed next to him and i thought 'this is the last time i do this without having something in me that coudl destroy his life'.....it was a very difficult time. Fortunately i have now told him about my diagnosis and he's coped brilliantly, as has the seven year old.
I will continue to think about it...but really thank you all so much...xxxxx

and....
on another note...I hope everyone is as well as can be expected today. I'm on day nine of tamoxifen and all is good so far...no side effects that i've noticed.

Usernotfound - that must be difficult for you. But there are many reasons why they might need to see you. What sort of biopsy did you have? My sister has had several needle aspirations where they've come back inconclusive and they then removed the lump and it was a fibroadenoma.
so it is more than possible that it is nothing sinister at all, but they just want to triple, triple check. They are looking after you. Though I don't want to negate how worried you must be feeling. And if they didn't seem hugely concerned at the time, then it may well be fine.
With my biopsy, though they didn't say for sure, it was made pretty clear to me that they were very worried and I was back in there a week later to get the news.
I hope you are ok.....my coping mechanisms were trying to ignore it all, reading old books, watching films I knew and loved and losing myself in work. They won't work for everyone...but try to find something that does distract you.
Meanwhile I will keep my fingers firmly crossed for you....and remember my sister...it's not always bad. xxxxx

Thank you for taking the time to respond to me Freddie, I find it incredible how helpful and supportive everyone here is despite what you are dealing with yourselves.

So after doing a bit of reading, I don't think I had a biopsy and just a needle test. I'm hoping it's just that the test was inconclusive like happened with your sister, but the wait is awful. I know they like to do everything face to face, but even if it was bad news I'd rather have been told that over the phone today over having to wait for yet another week.

ah right...if it's a needle test i think that makes perfect sense. You will just need another one, or a core biopsy or even take the lump out if it's very small to look at it, which happened to her.
I can't promise anything, but I'd say if they'd definitely found something sinister they'd have called you before and got you in quicker....
you take care...and I get that you'd rather know...completely get it...xxxx

Hi Freddie
If it's helpful / relevant etc, you can use any of my story. I'm not the shy and retiring type and anything anyone does to raise awareness of cancer in all its shapes and sizes is a good thing in my book.

I am coping, I just need to rant and rage on a frequent basis

Morning all!

For Freddie and anyone else who is interested in seeing what actual post mastectomy, reconstructed breasts look like (because I couldn't actually find that many before my surgery) my blog article is here > joandthetribe.com/2017/06/27/love-the-skin-youre-in

I sincerely hope this helps someone else feel a bit more positive about their body, a cancer diagnosis or having to have a mastectomy.

Very happy to contribute to any future articles.

Jo

Forgot to thank pepperabbit for the phrase 'do-I-give-a-shit-o-meter' :) It should be an actual unit of measurement and I hope you don't mind me using it?!

Joandthetribe beautifully written and beautiful pics....your blog scores v v highly on my do-i-give-a-shit-o-meter...its brilliant.. xxx

freddie I wrote a long reply the other day but my phone froze when I clicked 'post and I lost it! It may be too late now but some of what i wanted to say was that wih breast cancer, i think a lot of how you react is tied in with whether nodes are affected. If they're not then it's easier to be in the frame of mind that it's all entirely treatable and whilst treatment might be awful you will get through it and have a massively high chance of being around in years to come. As soon as it's got to the nodes then I don't think fear ever really leaves you and will impact your whole experience.

I was lucky first time that despite having a large aggressive tumour it hadnt spread but I still had to have all the treatment. I look back at times and feel that it wasn't a big deal but I know when I really think about it all there were some truly dark days during chemo when I didn't think I could carry on.

Second time round I was 'lucky' again despite a diagnosis of local recurrence less than 2 years since the first and just months after active treatment had finished. My nodes are clear but im not so blase this time as i feel cancer has not finished with me yet.

So there is definitely a place for presenting a view on cancer/treatment/ perception obviously everyone will have their own view

magic thanks for the update. I've been told that only 50% of the fat they transfer will last so they overfill to compensate. I'm hoping I don't have to have subsequent ops so have fingers crossed they can get it right first time. Great to hear that your recent lumps are nothing to worry about

Oh and jo I've just read your blog. Great piece of writing and well done you for the photos. The closest I've got to exposing my new body post mastectomy and reconstruction was in a bikini on holiday at Easter and whilst I didn't go as far as you have, I certainly carried myself with pride

Lacies, feel free to use my do-i-give-a-shit-o-meter at will....

Hi all, hope all well this evening?
Freddie, I think writing from your personal experience can only help others, when I was first diagnosed I googled lots with various degrees of success so would have found a post such as a student you describe v reassuring.
So, wig fitting yesterday, hmm can't say I love it even though my lovely hairdresser spent ages cutting it, it just looks to me like a helmet and screams wig! Not sure how I'm going to cope wearing it when I go back to work? Hard as my hair still all very much here although am sure will go soon, am really finding this the hardest part and feeling pretty down about it, and silly that it's the vanity that's making me feel this way 😔
Still, went to cinema today to try and forget all for a few hours, it worked and if anyone looking for an escapism movie would recommend it, albeit a bit violent but music was amazing and lead role pretty cute also, was called Baby Driver.
So am going to try the wig over next few days and see if we can become better friends...
Take care everyone x

hello lovely lacies,
I hope everyone is as well as can possibly be expected
I feel I've slightly hijacked the thread recently....so I apologise for that...and just wanted to give everyone big hugs for no reason other than they are nice to have and give!
and Leslie, I hope you are ok...you've been a bit quiet recently...no worries at all if you're just busy and real life taking over...and no need to reply at all....but thinking of you...xxx

Good morning all

user of course that's OK to post :) I'm sure it'll be reassuring for anyone else with the same symptoms. And I'm glad it was all OK, but sorry you had to go privately

freddie just real life taking over a bit. It's the worst bit of the cycle for me so if it coincides with any actual requirement to do anything that seems to use up all my energy you haven't hijacked the thread at all! I found it very interesting actually :)

Joes I hope you get used to your wig soon. I was determined to wear mine all the time once my hair fell out, but I just couldn't get on with it. It was a good match colour wise, and much nicer than my real hair. But it just wasn't me. I have always had quite limp, scruffy hair and my wig was more groomed. It also gave me a really bad headache I wore it for special occasions and wore hats the rest of the time. It's grown back a few cm now. I still hate it, but I don't feel so naked without a hat now that it's a bit longer. It's not vain though. Rightly or wrongly, how we look is a big deal. And the hair loss is a really visible "I have cancer" sign! Many of the other side effects can be more easily disguised.

usernotfound sorry they've added to your stress! I hope you get some answers soon. Not knowing is really difficult.

Twitter sorry if I offended you. That really wasn't my intention. Everyone gets through it their own way, so as long as you are "happy" then that's all that really matters :)

pepper those little surprises can really throw you can't they! Glad it's in the normal range, but even so

I'm going to leave it there as my screen keeps freezing and I don't want to lose all my very valuable ramblings I hope everyone is alright and having a reasonable day!

Oh gosh Leslie you haven't offended me at all! Why would you have done? I'm a newbie at all this and still trying to find my way; you vets provide a huge amount of not just information but reassurance too, even if it's not overt.

My father, OTOH, irritated the hell out of me earlier, when he rang for the 3rd time to ask if I had a date yet. NO I DON'T HAVE A FUCKING DATE YET - I SAID I WOULD TELL YOU WHEN I HAVE ONE AND I HAVEN'T TOLD YOU SO THAT MEANS I DON'T KNOW....

I know he means well.

Ah phew :) sorry about your dad though. That sounds maddening! I'd be tempted to start making preemptive phone calls to tell him you still haven't had a date... my mum tends to fuss me a lot and when it all gets too much I respond to all of her questions with an equivalent. It's quite petty, but satisfying and I think it does make my point

I told my parents at the beginning that is rather not discuss my breast cancer.. .my father took me so literally that he didn't even wish me luck before my operation!!!! Xxxxx

that's impressively compliant freddie!

How is everyone today?

I ended up in A&E last night with chest pain and difficulty breathing. My lung is a bit infected and I have another pulmonary embolism. It's been there a while so probably the infection causing the symptoms. They kept me in overnight on an annoying cardiac monitor, but the consultant reckons I can go home today with antibiotics. Now I'm just hoping the oncology team don't find out I'm here as they often screw up escape plans!

Hi Leslie, all, just checking in -- think I saw my name somewhere but I'm only now reading through earlier posts.

My update is a non-update: it's half a year since my surgery (single mastectomy + DIEP) and everything is settling down in terms of scars and swelling. On tamoxifen with no side effects, and I'm due for a scan at the end of the year, and yearly thereafter until 50.

So until November or December, I'm in an in-between phase where as far as I know the cancer is gone, though like pepper says there's always the niggling feeling wondering if it will come back -- and if it will be outside the breast and worse next time.

In the meantime critical illness insurance has paid out (yay!), and I'm living life as normal and working full time. Having the garden and kitchen done up, and have gone/will be going on a few trips to the Far East and US. Nothing like a cancer diagnosis to get you going.

Hugs and 💐 for everyone!

P.S. Hope you get to go home today, Leslie!

I'm home :) I'll need to take some antibiotics but otherwise all seems to be OK. The pain should wear off in next few days.

java it is lovely to hear from you. I'm glad things are relatively calm and that the Tamoxifen isn't causing you any issues. I'll keep my fingers crossed for your scan :) also good to hear about your adventures - have a wonderful time!

I hope everyone is having a good day

So pleased you're safely home Leslie.. ..heres to the antibiotics kicking in quickly...xxx