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

[WhatWouldLeslieKnopeDo]

Happy New Year! 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! :)

Chewing I second what Argy Margy says...absolutely. it's not OK that they aren't on top of your chemotherapy regime and are getting confused.
I will also say that it was suggested to me that swapping consultants/hospitals might delay my treatment. In fact it was the opposite - I'd still have another week to wait for my operation if I'd stayed with my original one, in reality I had it done a week ago.....
Another oncologist I interviewed told me that people who "take an interest" in their care have better outcomes....ive taken him VERY literally.....
I hope everyone's feeling as well as possible today.. . for all...because we deserve them and it's Friday!! Xxx

Where is everyone? Hope you're all ok.
I've had some buggery bollocks news today. CT scan shows it has spread to my liver now which we really didn't want
I am going to start Herceptin and Docetaxel soon to try and hold it at bay for a bit longer.....

Oh bugger chewing I hope the new combo will stop it in its tracks. And I hope it doesn't cause more confusion!

I am around but I feel like I post here too much so was trying not to be so keen

Nothing exciting to report here really. I'm still waiting for the hospital to actually confirm my surgery date so I can get organised.

Argy how are you getting on?

freddie fingers crossed for you for tomorrow. I hope you have something to distract you until then

DieDeutschLeherin I hope your daughter's chicken pox is clearing up

I hope everyone is getting some sunshine today. It's lovely here :)

Chewing I'm terribly sorry, what shitty news. Did they suggest a new plan or are they carrying on with chemo? Bollocks I loathe this sodding disease. Huge hugs for you.

Leslie it's ALWAYS lovely to hear from you.. .surely we don't need to worry about being too keen on a cancer board...er do we (wagging tail and panting like an enthusiastic Labrador!)? You're so lovely to remember my appointment tomorrow... I'm dreading it, distracting myself by going to office, today I'm writing about women addicted to lip fillers so they can look like their Towie/Geordie Shore heroines... nothing like complete and utter banality to take your mind off things....
When's your op supposed to be...hope it's all confirmed soon

And everyone else...i hope all is as good as it possibly can be...have to say sunshine does help one believe good things can happen.. .

Xxx

freddie well, I don't like to fill up the whole thread with my inane ramblings but better than it being quiet when people need it, I suppose.

My op should be next Wednesday.

Is someone going with you to your appointment? The lip filler article sounds intriguing and certainly a good distraction. Is it a procedure that has to be "topped up" or are they just having more and more to get bigger lips? I expect I will get through quite a few magazines in hospital so I shall keep an eye out for your article!

Chewing I'm so sorry...i see you'd put their plan above...doh. Huge apologies.i stick by my other comments tho...

Leslie...hope op is Wednesday. The article is a nonsense.... they're all morphing into each other, enormous pouty lips, cheek fillers and eyes weighed down by false lashes!! And now "real people" as opposed to "reality stars" want to look the same too. Seems a shame individuality is not celebrated more. Ho hum.
Btw if anyone wants a supply of truly trashy mags feel free to pm me your address and I can fling some in the post. Promise over enthusiastic Labrador only extends to cancer boards.....am not a stalker!! Xxx

Oh chewing I'm so sorry. That's not good but I guess the chemo should give it a bashing.

Fingers crossed for your op Leslie. I'm doing ok thanks, today was day 5 of 1st FEC cycle so early days but so far not too bad. Although sun didn't arrive here until late afternoon - not impressed!!

Chewing, that's crappy news for you. I hope they come up with something to block it's selfish path and leave you in peace for a bit.
My dd is covered in the pox but generally more cheerful than her 5 year old big brother managed. Husband bought her some piriton as she slept terribly last night. Pharmacist handed it over saying, "It may make her drowsy." It mad eher much happier, but amusingly, more drunk toddler than drowsy. She climbed into bed with me, rolled all over me, licked my face repeatedly then giggled, sang "Let it go" through a few times, then passed out.

Had my CT scan this morning then appt with surgeon this AM. The bone scan was clear and I have a provisional date of 19th April for mastectomy, although they are wondering if they can get me in next week as I am close to my breach date, apparently. I won't be able to relax until the CT results are in though.
Nice to have updates from everyone. I hope tomorrow's a good one x

freddie that's sad. My cetuximab has given me weird eyelashes. I don't know why anyone would lengthen them voluntarily. They're so rough and they are always scratching my eyes. I may take you up on your magazine offer

Argy hopefully that means you'll get sun tomorrow. I think we are due rain here. I'm glad it's going OK so far. Fingers crossed that continues

Deutsch oh dear! I hope she sleeps better tonight good news about your bone scan, and fingers crossed for the CT. I hope they can get your op done sooner

Hi all,

Chewing I'm really sorry to hear your news. As someone else said this really is a shitty disease. ❤

I'm still waiting for biopsy results, should hopefully be this week. Biopsy site got infected so I've been in a bad way the last two weeks. Hopefully out the other side now but I'm mentally and physically exhausted. And I don't even know what's wrong yet! You're all doing amazing being so strong it really is an inspiration! Sorry I'll stop being sappy now

Thanks for all your good wishes.
to all those awaiting results or attending appointments in the next few days.
I have had a last minute invitation to have a short break in the land of straw donkeys. It should take my mind off this crappy illness for a bit. Catch up with you all next week x
Freddie I'll pm you at some point as always happy to read trashy mags. Good luck with the trout pouts

Hi everyone.
I posted a but back last summer when I was diagnosed with a brain tumour at the start of the second trimester of my second pregnancy in May 2016. It's remained untreated and only grown marginally in that time which is great. Obviously positioning means no biopsy etc (stupid skull) but I've got my pre op on 19th April and hopefully the whole thing will be coming out soon after but we shall see! At least once it's out we'll know exactly what we're dealing with and whether I'll need further treatment. I'm 32 with a 23 month old and a 4 month old so really hoping to avoid chemo this time (it's pretty certain to return more aggressively at some point near or far). Anyway. Hi and sending lots of to you all. I'll try and read back a bit in the next few days.

chewing have a lovely break, sounds like you need it after more shitty news and chemo mix up
Leslie good luck with your op and hope it goes ahead
almay hope you get your biopsy results and a clearer idea of what is going on
freddie Hi! I had an 18 yr old student who had "preventative Botox" so she wouldn't get wrinkles!?!
Deutsch hope you can get an earlier op and CT scan was ok. A Dr friend recommended giving paracetamol and piriton together to guarantee a good nights sleep!!
argy flippy anyone else going through treatment, waiting for results, trying to get through each day

After saying I was feeling fine I got knocked out with D&V and stupidly waited 3 days before contacting the hospital. Thankfully no overnight admissions, just lots of time over the past week going in to have bloods done, more fluids, syringe driver, antibiotics etc. I have completed quite a few squares for woolly hugs though during all my waiting.
Totally suffering from chemo brain, I forget words mid sentence and found a tub of tuna mayo under the sink, where I'd clearly decided it should go last night! Having a conversation with my mum just ends with us in hysterics, as her memory is bad too.
The sun has really helped lighten my mood though, hope it's shining for you all.

Chewing, I'm sorry to read your latest crappy news, but I hope the proposed treatment will help, and that you enjoy your break.

Oooft Halfbaked, sounds like you are going through the mill, but good you haven't ended up back in hospital.

Leslie, hope you're ok and everything is in place for your op.

Rocket, how are you, if you're lurking? Hope you're still doing ok Argy. We had a couple of lovely sunny days (after snow three days earlier - bonkers!!) which has been great.

Hope today went as well as it could Freddie.

I'm halfway through chemo now, and it hasn't been too bad overall, although I had my first bisphosphonate infusion on Friday and I think that gave me some extra side effects. I had a very upset stomach on Friday and I've felt sore and stiff since. Getting a bit better today. Fatigue is getting worse but I'm still trying to get out for a walk every day. It does help, even if I have to force myself to do it. I've put on about 3kg since starting treatment which is a bit rubbish, but not surprising as I'm eating far too much toast... and biscuits...

I'm still waiting to hear about some counselling for DS and the DEXA scan. I have a hospital appt tomorrow so will see if the onc has referred me. I'm so sick of having to ask, ask, ask - for everything.

Lovely lacies...ive had my appointment and thankfully no smack in the face with a wet killer.. .nodes definitely clear, they got v clear margins, it didn't grow (still 25mm) and stayed at grade 2. So now I'm waiting for the results of the onco typing to come thru which will determine whether I have chemo or radiotherapy next. For the moment I'm hugely relieved!!!

So hope all is as good as can be for all of you too.
Chewing I hope you're too busy having a blissful break to be reading this..but I'm thinking of you

Leslie I hope it's all still on course for your op

Deutsche...giggling about your "piriton drunk" daughter...the stuff knocks me out completely

Halfbaked...tuna mayo under the sink...just hilarious...tho yuck to the d and v bug and all that it entails

Almay the very best of luck for your biopsy results

Greykitten...cancer and a four month old...youre amazing to be able to even think about typing....i wish you the very very best of luck with op

Argy and flippy...may the bloody chemo be doing exactly what it should be doing and blasting those sodding cancer cells

Xxxxxx

Er I meant no slap in the face with a wet kipper!! Xx

Freddie, that is great news. I can imagine the relief completely. I hope you can have a nice relaxed day today.
Hope everyone else is doing well xx

Wrote a post last night and mumsnet ate it before I finished !

chewing that's really pants news . Hope your little trip away is fabulous.
I think you should come and share my oncologist. His face lights up when I ask questions. He LOVES questions!

flippy glad chemo has been (mostly) kind to you . I had my fair share of ridiculous unhelpful comments. One of my favourites being 'does it really matter' in response to me saying Id been feeling really shit about loosing my eyelashes and eyebrows. Cancer certainly sorts the wheat from the chaff doesn't it?

Freddie great news .
Im looking forward to the article in 30 years time , a kind of what they look like now on these botox/lip filled 20somethings . Messing about with your face so early in life has got to take its toll in the long

Deutsch Hope your daughter had a better night , the drunk toddler description made me smile .

Wishing you all a lovely day and hope everyone is as well as can be.

almay sorry to hear about the infection. You poor thing I hope you get the results soon. We aren't any stronger or more inspirational than anyone else. We are just dealing with the hand we have been dealt :)

chewing I hope you enjoy your break. It's certainly well-deserved!

LittleGreyCat it's lovely to hear from you. I've often wondered how you were getting on. And great to hear that your little one arrived safely - did you have a girl or a boy? Fingers crossed for your surgery and that you won't need any other treatment for now

Halfbaked you poor thing! I hope you are on the mend now, and good news that you didn't have to stay in hospital. I'm a Woolly Hugger too. It feels like I'm doing something useful when I'm sitting around all the time. Do you knit or crochet or both?

Flippy wooooooaaaaaaaaaah halfway there... well done for keeping up with your walking. The fatigue is hard work, but staying active definitely helps. I hope the bisphosphonate side effects wear off soon. Good luck with today's appointment. I hope they get your scan sorted

freddie phew for no kippers or killers! Fingers crossed for the other results.

Waving to Stila and Deutsch

I hope everyone is having a good week so far.

I am still waiting to hear from the hospital about my operation, but my nurse seems to think it is going ahead so fingers crossed

Great to hear your news Freddie, I don't believe there's 'good' cancers - they're all totally and utterly shit - but it's definitely better not to be hit with any wet killers :)

Stila - other people can be total twats! They just don't think sometimes, and yes, it does make you realise who you can rely on and trust.

Leslie, I do hope all is still in place for your op next week. Will you be in for long?

I'm glad to say the side effects have calmed down and I'm not nearly as sore now, although weirdly my collar bone - on my non-cancer side - has continued to ache.

It looks like my onc is going to add carboplatin after this week to my final five weekly treatments. Only because I asked about it today when I remembered something he'd said in an earlier appointment. There must still be some benefit in having it, but I'm a bit annoyed with myself for not remembering sooner and that none of the medical team brought it up either. He's still not referring me for the DEXA scan but apparently will discuss it with me next week. My notes temporarily went AWOL during today's clinic, so I had to wait for over an hour and a half past my appointment time which was frustrating. The good news is that I have a referral to the integrative healthcare centre and they're going to try and speed it up too.

Hope everyone is doing as well as they can

Thanks Leslie. My lovely little girl is 4 months old now!

Flippy I'm still here, but lurking thinking I didn't have much to say! Thanks for thinking of me.
I'm on with radiotherapy now - 15 days 'standard' done, and now 2 days into a 5 day 'boost'. Feeling a bit pink and slightly tender to the area but nothing too bad yet.
Good news is my oncologist seemed pretty happy with look of my skin on Monday when I was being marked up. The cancer 'rash' has faded significantly and isn't raised anymore. Hoping and hoping it really has been blasted into submission. He said he'd see me in 6 weeks which is his norm and makes me think he isn't worried anymore.
My head space is feeling a lot better this past week - I know I can only wait and see but trying to think positive whilst not getting too excited yet.
Chewing I hope things are sorting themselves out - you shouldn't be messed around so much. I was ok on Docataxel - only SE was very painful diarrhoea so would suggest you get stocked with some anti pills just in case

Will try and catch up with the full thread now - I need a notebook so I can keep track.

Thinking of you all - even if I haven't name checked x

Hi all! I hope you're all getting along OK and preparation for ops and chemo issues are being sorted. I will learn how to do bold and keep better track of what's going on with everyone very soon.
I had a call from the BCN today to say the CT scan was clear (apart from. Kidney stone) and showed no problem with the lymph node, which, added to the fact it was clear on the ultrasound, feels reassuring. The operation will be on the 19th as they can't bring it forward. Funny how you can feel relieved it's "only" Breast Cancer or DCIS or whatever they decide it is when they remove the boob. I feel we've taken a step back from the edge for now.
Friday tomorrow. Wishing a good weekend to everyone x

Hi everyone.. .hope everyone is ok.
Deutsche just wondered if you've had your ct scan results. I feel so much for you.. the diagnostic phase was absolutely horrendous for me....keep on thinking about you. I was knocking back beta blockers and sleeping pills.. .but sure you're far more sensible than me.

Chewing ...hope you're still enjoying the sunshine

Flippy...glad your side effects are lessening and great 're your integrative medicine appointment. I love my acupuncture

Quick question...am I being ridiculous? I mean I probably am...but despite feeling pleased about latest results I'm feeling twitchy about waiting for onco type. I feel this sense of urgency to get on with next stage of treatment...keep on imagining stray cancer cells busily multiplying again while I wait for results.. .and meanwhile I'm doing Nothing to fight them...no radio no chemo and no tamoxifen and I feel I need something other than glugging turmeric and black pepper tea!!
Meanwhile think I've traumatised 7 year old son...he clambered into bath with me...i thought my scar round my nipple was v neat...but he took one look and said "urgh what's that?"...i find it v funny as honestly it's not bad at all...abd the look in his face was hilarious. But hope he's ok with it really!! Xxx

Rocket, I do think of you, because our dx was fairly similar and around the same time. And I know that it definitely hasn't been a smooth ride for you either, so I was just hoping that maybe things were a bit better - and fingers crossed that they are and you're still feeling positive.

Good to hear your news as well Deutsch (are you a teacher who is German or a teacher who teaches German - nosey...). It might sound a bit silly/trite, but maybe you'll be able to enjoy Easter and the time before your surgery now you've got some clear results?

Freddie, no, you're not being ridiculous, waiting for any sort of results is stressful, and I totally understand your wish to get on with it. I don't know if it helps, but I am Stage 3 and Grade 3, and from my dx in November to surgery in January, neither of the tumours had grown. It is so easy to imagine those bastarding cells going crazy, but they're probably not. I don't want to dish out unsolicited advice, so do feel free to ignore, but it would have been useful for me to up my Vit D and iron levels a bit sooner.

Hope everyone's doing ok today.