The Lacies are back for cancer support thread 56 - all welcome!

[WhatWouldLeslieKnopeDo]

Hello again, and welcome to our 56th thread. Some of us have been here ages and others have just joined. I hope you've all made it safely over to the new thread.

An extra special welcome to anyone who is lurking and feeling a bit shy. We are all quite friendly and we definitely don't bite, so please do say hello if you'd like to.

All are welcome here. We started off as a breast cancer support thread many years back, but all cancer types are welcome and at any point in the "journey", even if you haven't yet been diagnosed. We have all had different experiences but there's almost certainly someone here who will understand how you are feeling.

Our previous thread is here.

I have started the new thread a little early, and I will explain why in a moment.

Hi bobdylan hope you're feeling ok.
I get my results for Paget's disease tomorrow morning - I had a nipple biopsy for it last week. And an MRI.
Hope we both get clear results - it's an added complication to my impending lumpectomy.
I've only been on here a few weeks and mainly just hanging in the background.

Had a weird experience this morning - I removed my dressing in the shower as it was annoying me. It was a bit painful and scary to look at but fine. But as soon as I had done it I felt a wooshy feeling like fainting and a real sick feeling had to get out the shower and just sit still for ages. Maybe it was an emotional reaction but totally unexpected.

Evening all.
Been slouching around in comfy trousers today
I've just been bitten by a mosquito or something so hope it dies from the chemo poison!
Good luck rocket and bob
weebarra hope you had a good birthday you young whipper snapper
tutti hope your appointment is helpful
Pepper my sister had a badly looked after Girls World. Green eyeshadow I recall
Leslie chill..........
I've had a call from GP surgery to book a telephone appointment with a doctor. I asked why and was told that the hospital had asked them to do it so am now wondering what it will be about Could be because of the secondary I suppose but will have to wait and see (as per usual).
Anyway, good night, sleep well.

Permission to swear ... Fuckingfuckfuckfuckfuckfuckingfuck

Got my MRI and biopsy results today - it's bigger and more spread than they thought - and also Paget's disease. I have real proper grown up breast cancer. WTF.
Feel like a bloody pin cushion - just had more blood tests, a body CT and ultrasound and needles in my armpit. I appreciate it was all done quickly though.
I can't believe it. I have to have chemo now before surgery. I don't know how to deal with this.

Fuck this.

Hope you're all having a better day xx

Rocket bloody cancer always greedy for more. Lots of hugs from me.

rocket sorry to hear that and feel free to swear as much as you like (or cry and shout) fuckety fuckety fuck is my expletive of choice.
It's a lot to take in, do you have a BCN you can ask questions? Hopefully chemo first will reduce the amount of surgery you need?
It is indeed very shitty, big hugs. x

rocket
So sorry to hear this. I have found that chemo has not been as bad as I thought it would be so hopefully it's the same for you. Cancer is a bastard but do stay around here for the support and advice.

rocket so sorry, you have every right to feel angry. None of us should have to go through this it really is crap. Everyone reacts differently to chemo but by and large we would all say it's doable. Once you get your full treatment plan just take it day by day and week by week and you will get through it. Hang around here if you find it helps. Oh and as for weird reactions removing dressings, I got into a right state removing mine for the first time recently, I literally had to go and have a lie down

chewing do you have to wait long for your GP appt? Hope it's nothing too sinister

pepper hope you've found your phone and your memory doesn't get any worse, that sounds frightening and annoying in equal measure

Belated happy birthday wee!

bob sorry you've got to wait a bit longer. This is always the hardest time and can never go quick enough.

I had my first follow up with the plastics team and mentioned my bald patch on the back of my head. They were completely flummoxed and sent me down to the photographer to get a picture of it. The registrar did a quick search though and found a few cases for pressure related alopecia following long surgery so that's probably what it is. They will discuss it with the whole team in their regular get together soon to see if anything was noted during the op and to make sure it doesn't happen again. Trust me to throw up something new!

Rocket, so sorry the results were worse than expected. Chemo will zap it though, and it's tough but doable and you will get through it. I had a similar situation to you and had chemo first, it was good feel the tumour shrinking and this way round you will know if the chemo is working and be able to switch to different types to find the most effective treatment. If you have surgery first you will never really know how or if the chemo is doing it's job!

So sorry Rocket. Anger is a normal reaction and I experienced pure rage for about two months after diagnosis. I think it will carry you through the initial shock; but hang on in there. Once things start happening and you start treatment you will hopefully start to feel more positive.

Happy belated birthday wee and many many more.

Chewing do they have a Doctor run advise line. I'd ring and ask what it's all about.. This waiting around lark is just head fuck after head fuck, (I was respectable before this Rocket , now my language is fit for the gutter ).

Bob sorry for your extended wait. It's dreadful ^ see head fuck above . Hang on in there, we're all thinking about you.

Pepper bet your hair's lovely and Leslie hope you're taking it easy and feeling better.
Hi Royal, and Minty hope you're well. Trust Minty to have special "soon to be written up in a journal" hair.

Had an interesting and unexpected day today. Was only going to get the wound redressed and have a chat about my derriere.

But... all my results (save the histology on the operation last week) are back. Lovely BCN spoke to surgeon and he gave her the OK to tell me (apparently I'm very sensible.)

Wound clear and didn't have to have it re dressed. Clean hair whenever I want yay !!!!

Bone & CT clear save for a small query re neck lymph nodes. Cancer Grade 3 HER 2+. Mixed bag, but definitely (I feel) the better side of bad news. Was convinced it had gone on a grand tour.

I had a consult re the bottom problem with a very nice young man, it wasn't my finest hour, but Cancer's the gift that just keeps on giving. No piles, however the radioactive liquid can have an abrasive/irritating effect on the stomach and bowel. Apparently I shouldn't have had two doses in a week. Glad I did though and got it out the way.

So quite an unexpected day. Waves to anybody I've forgotten to mention... so many posts.

minty trust you to have special hair You can join me on the medical marvel bench.
My GP phone appointment is not for another 10 days so I'm guessing it's nothing too important. I have asked what it's about but just a vague mention of a request from the hospital has been given . Oh well, I am now accustomed to waiting for everything so will just wait and see on this one. I have a review meeting with oncologist next week so he may have more information perhaps.
Tutti good news about the scans. Hope your bottom is feeling better soon.

Well that's a first chewing.

Only in cancer land "Hope your bottom is feeling better soon" Thank you chewing...... errrrr that's errrrr really kind of you.... i think .... to send good wishes to my arse

I have suffered with piles in the past tutti so I have anal empathy

Rocket I had a very similar experience to you. I was initially told that I would only need surgery for DCIS and ended up having mastectomy, ANC, chemo, herceptin and tamoxibollocks. My histology report showed that part of my tumour was just behind the nipple, but was not Paget's disease, but it was doing other unpleasant things to my breast and lymph nodes. It is crap when you are told "good" news by an oncologist, and then the next week they say sorry actually there's a few more problems than we thought there were.

Tutti, your histology report is similar to mine. Being her2+ means that treatment on the chemo day unit goes on for a while longer. However, since finishing chemo I'm only there for a short time because the injection is pretty quick.

Outlaws I hope you are coping with the chemo side effects and have plenty of help with the children.

Leslie I'm sorry the chemo has been making you feel rough, but well done for being good at resting

Thank you for thinking of me...yes, coping away over here. Had a good day at chemo session on Tiesday, everyone was kind and lovely. I guess the first lot is the easiest as you're starting out in full form and the dose isn't at full whack? Still, last couple of days haven't been much fun but I'm grateful that they've been quite bearable.

PICC line will go in before next chemo...am a bit nervous about it. Also, what with the clambering children, eep.

I feel bouts of disbelief and sadness...it feels surreal, I keep expecting to wake up and find it was an elaborate dream sequence. Sigh.

wee that post about your little one made me smile...happy belated, and here's to many, many more.

You are right that the side effects are cumulative, but normally they give the full dose on the first go and then reduce it down if patients aren't coping.

Chemo can be a long and lonely time, but you have ticked one off the list now. It is easy to feel disbelief because you don't feel unwell with early breast cancer, and so it can just feel like a horrible mistake. I can't help on the picc line, I had all mine through a cannula.

Hello all, newbies too, sorry you're having to be here. I'm back from holiday, DD was able to go back to university last Sunday with a big box of antibiotics and strict instructions to avoid alcohol all week. We've had a lovely time, eaten far too much and walked until every muscle ached. We saw Sir Antony Hopkins filming in Oxford on Friday, new transformers film apparently, so I'm never going to see it. Interesting though.

I've had a quick read through but not taken it all in too well, I think I agree about tamoxifen affecting memory and thought. Sounds like a mixed bag of news, as usual.

I'll catch up in the next few days but for now, Leslie I hope you're ok, Wee happy belated birthday, Outlaws I'm so glad to hear you're coping, hang in there.

My favourite expletive for the worst occasions, buggery bollocks.

Hi Everyone,
I've just returned from a Younger Women Together course. It was really worthwhile. I stayed in The Hilton, Leeds, for a night, all accommodation and meals were paid for and there were around 35 women on the course all under 45. It included various talks and workshops and chance to just share experiences with women in similar situations. People came from all across the UK and Scotland. If anyone is interested information on future events can be found here. www.breastcancercare.org.uk/information-support/support-you/local-support/younger-women-together

Hope everyone managed to enjoy some of their weekend

Morning all. fresta that's sounds a positive weekend, hope it helped even if it just gave you new friends to keep in touch with.

I had a slightly more daft weekend.... DH and I went to a fancy dress party on Sat night. The theme was T and K, the initials of the birthday couple, so I went as Tiger Lily and DH went as 'man on kangaroo'. I'm not great at posting links on my phone to show you a photo but it's one of those outfits that make you look like you're getting a piggy back on something. Anyway it wet down a treat :). Had a great time although my tummy scar was quite sore at the end so that put paid to dancing and encouraged lots of sitting down but it was so good to feel normal. Just building myself up again now for going back on the hard stuff later in the week.

mrs glad you had a great holidays and hope DD is back in the swing of things again.

Waves to everyone

Sounds like you both had lovely weekends Freda and Minty.

Great that you enjoyed your holiday Mrs Hodges.

Woke up on Sunday morning with pretty bad Lymphoedema, going to wait until tomorrows consult, but may have to go into town to get my ring cut off today.

oh tuttifrutti that's pretty cr*p. Sympathies

Oh tutti that really is crap :(. Sorry

HI everyone
I'm new on here so bear with me. Diagnosed with breast cancer July this year and post surgery (WLE) have been prescribed tamoxifen and radiotherapy. I had a treatment plan app on September 15th but have not received any appointment dates yet. I really thought I would hear by last week. I've rung the radiotherapy dept but they only have an answerphone service where they get back to you in 24 hours. Was I being ambitious thinking I would get the dates through in a couple of days? I'm really frustrated as until I have these dates I can't plan ahead, my sister is waiting to book leave so she can come and help out with trips to hospital etc (20 mile round trip). Any ideas?

Hi MLaB. I can't remember how long I had to wait for appts or what the guidelines are but you may not hear anything till later this week. Was your appt on the 15th your radiotherapy appt (ie where you lay on a ct scanner and got your tattooes)? If not then that will be your next appt and then it might be a couple of more weeks before the treatment actually starts. Hopefully some else with more recent experience will be able to help. But welcome on board, sounds like you've got through the worst of it all ready but hang around if you need any more advice or hand holdig

Thanks mintyneb, I've been lurking around this forum since my diagnosis. Everything has moved so fast for me, luckily, and my prognosis is very positive. As everyone says the waiting and helplessness is one of the worst things.

Sorry forgot to add that yes it was the planning appointment where they mark you up for the radiotherapy