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! :)

I've had a Google. Ask them if they do lacie group discounts
Tw1nset wow 8000 steps is fantastic. I hope you are cancer free

Hello lacies, I've been reading but not posting for a bit but wanted to catch up. I'm glad you're feeling well after your operation leslie and that your lump has responded to the chemo chewing, sorry about the hairloss though.
I'm pleased that my weight has stabilised after the initial 1/2 stone in 3 months gain on starting letrozole . I've given in and bought bigger trousers for work and some jeans, which are amazingly comfy after the tight squeeze of my older ones!
I have also realised that my sore lips, literally bleeding and with skin peeling off is triggered by not drinking enough - rather an extreme reaction to forgetting to finish your water but at least I can ward it off now I can see the pattern.
I asked in the chemist today if you could get the Vitamin D3 at the higher level OTC now but the Fultium (2500 iu?) I was on before is still prescription only so I shall stick with the 1000 iu I have and push for a retest in a few months.
Intrigued by a cancer hotel! Sounds like a brilliant idea.
Hope everyone is as well as can be,

Hello all....so I've been out celebrating!! Oncotype came back at 16 which is considered low risk so it looks like radiotherapy and tamoxifen for me. Hugely relieved but once more nhs rubbish...i rang genomics who do test and told me results were with hospital. Hospital denied all knowledge...cue much toing and froing. It's weird the actual surgery etc has been second to none...but the admin is frankly rubbish.
Anyone who's been thru radio and tamoxifen please do let me know what I'm in for...any tips incredibly welcome and nothing would be deemed interfering. Truly grateful for ALL input.
How's everyone else?? V v much hope you are all well.
Right off to bed now.. .And really looking forward to feeling inexplicably tired
, thirsty and headachey tomorrow.. .
ahem. Bad bad vodka!! Xxx

Fantastic news freddie I hope you are not feeling too delicate this morning!

pepper lovely to hear from you. I hope your vitamin D level is better when tested :)

Tw1nset glad you're recovering so well, but the reaction sounds nasty

chewing and TwitterQueen I hope that yesterday's chemo went well! And fingers crossed for not too many side effects

I'm at the chemo unit now. All hooked up and had my pre-meds but my blood results are a bit iffy so they're waiting for go ahead from the oncologist. I hope everyone is having a reasonable day

Head astonishingly not too bad.
Did you manage to have chemo...hope you're ok...xxx

Yes I did. Thankfully the nurse ignored the on call oncologist who told her to send me to A&E and contacted my own oncologist who said it was fine. I didn't get started until late so I was the last one there. Thankfully not past the end of their shift though!

I'm glad your head is OK!

freddie I am so pleased that you have had good news.

leslie I hope the chemo went well and you are OK now.

My skin has almost healed, the doctor is now saying that he doesn't think it was a reaction to the morphine and that I have had a reaction to something else. It has gone though so it doesn't matter now.

I managed to take my little boy out for the day yesterday and did 10,000 steps. Today I met a friend for lunch and have slept this afternoon as i didn't sleep well last night. My bowels are very erratic and I now have the dreaded piles. Taking a complete rest day tomorrow as we have a day out planned for Saturday.

I spoke to my cancer nurse today who was positive although he made a Freudian slip when he said "When the cancer returns" rather than if" They will get the full results from my surgery on Thursday.

Will they scan me again to check everything has gone? I feel like I am in a strange limbo.

Freddie big congratulations on the oncotype! I think the radiotherapy is what will make you cancer free. The tamoxifen will help prevent it coming back. Love the idea of cancer hotel

Leslie hope you're feeling ok after yesterday's chemo.

Halfbaked can I ask were you completely bald when you did the henna crown or did they ask you to do a really close shave? I've still got quite a lot of stubble!

I had 3rd FEC chemo on Weds so feeling a bit bleugh today. But sunshine is promised all day here so that's a bonus!

xxx

Argh chemo brain!! The comment about radiotherapy/tamoxifen was meant for Tw1nset! Sorry.

Tw1nset I know it must be really difficult not to pick up your son but please be careful!! I did read an interesting (but inconclusive) paper about controlled weights based exercise in post-mastectomy patients. As long as you don't twist, lunge, slip, etc...

Oh god I really have no idea what I'm writing. I blame the phone. Sorry ladies just ignore me

Leslie Hope you are OK. I'm fine (though constipated ). Tired today and yesterday. I logged into work call and promptly fell asleep for 20 minutes. Luckily on mute so hopefully no-one noticed.

Argy I'm with you. Brain fog is clearly here to stay for me. We watched 10 minutes of Building Alaska on Monday eve and when one of the girls switched over I told them to put it back on Baked Alaska.... I can't think of the right words for things either. I tried to ask a nurse to warm up my wheat cushion but couldn't get the words out. She told me it was OK, and just to wave it at her!

Morning all
pepper good to hear from you and glad that you're feeling a bit better.
Freddie huzzah for oncotype results . That must be a big relief.
Leslie glad that you've had your chemo. I am not feeling too bad after mine - just tired at the moment.
Tw1nset and Argy hope you're feeling better today.
Have a good weekend all.

Twitter I'm fine thanks, just a bit tired same as you :) I'm impressed you even attempted the work call! At least nobody would have heard if you were snoring

Tw1nset I'm glad you're healing well I hope you're managing a rest today!

Argy another one with chemo brain here so you have my sympathies! Enjoy the sunshine. How are you finding the FEC?

chewing sorry you're tired. I hope you manage to do some nice things in between resting :)

I'm still in my PJs so I should probably get up soon!

I am in bed and feeling a little low. I don't do very well when I am stuck in the house. I am too tired to read and can't even stay awake to watch TV. I am watching the autopsy series "The Last 24 hours" but keep falling asleep and having to start again. I have watched Elvis fall of the loo about 20 times!

If it's any help ( possibly not ) when I'm too tired /unwell to read I look at catalogues .Or have Radio 4 on quietly in the background .

Wishing those who are tired a restful snooze and those who are suffering physically or mentally some respite .

Waving excitedly at sunnyhills how are you? And what are your favourite catalogues?

TwitterQueen I hope your energy levels improve soon. I agree with having something on in the background. I had Disney films in the background the other day. Otherwise just some classical music or a soothing podcast. Not something I actually care about listening to, but just to keep me company. My friend sent me a poetry CD which is so relaxing.

Feeling low is only natural. I used to fight it. But I had a very sensible and kind message from sunny reminding me that it would pass. Now I just surrender to it, though obviously trying to do things that will improve my mood rather than make it worse. Have you tried mindfulness? I know it's a bit of a fad, and probably not the thing to try when you're exhausted, but I have found it quite helpful. Headspace has a free ten day programme, and there are various other apps and podcasts etc.

Anyway, sending love and hoping you feel better soon

Thank you ladies for your sympathy & empathy!

Leslie I reckon first 10 days not so good then next 10 days back to normal (which for me is fit & healthy). So I've been fortunate although for this 3rd one I've had a virus so feeling a bit worse. One more FEC then onto T.

Definitely mindfulness for me; I was getting into it before all this cancer started. And radio 4 downloads and spa/relax/massage playlists!

Have a good weekend lacies all.

I have used headspace before and so could easily try it again, thanks Leslie

I do like radio 4 Sunny and was listening to their 30 minute comedies just before going into hospital. I could do that again.

Thanks for the advice ladies

Argy I hope you manage to shake off the virus quickly :) almost halfway through the chemo cycles too! Excellent

Have a good weekend yourself :)

I had my final chemo yesterday! So pleased it's over, but it doesn't feel like a celebration, if that makes sense. What I think must have been 30 hours in the cold cap was worth it, I think I've lost about 10 - 20% of my hair. Obviously a bit more might come out over the next couple of weeks, but I'm really hoping that it's going to be alright.

I have a treatment free week and then onto rads, which I'm not looking forward to - who would?! But I can see an end in sight to the active treatment.

Twinset, sounds like you're doing pretty well after surgery overall. Well done! It's not a surprise to have low days and duvet days though - be kind to yourself.

Good news for you Freddie.

Leslie, glad you had your chemo, hope you're feeling ok and surgical recovery going well.

I've signed up for a 10 week mindfulness course run by the integrative care hospital, but I don't know when it's going to be. I've been using a free relaxation by Andrew Johnson (easily found by searching by his name on the app store) which I really like, because he's got a nice soothing Scottish accent. I'm getting a bit bored of it now, so going to try something else. Calm is another one I liked, it also has 'sleep stories'. I signed up to Audible before hospital, and I also listen to R4 dramas on catch up. I couldn't concentrate on reading either.

Hope everyone is having the best weekend possible and maybe enjoying the sunshine too .

Flippy...yay!! Well done with cold capping...i imagine you feel battle weary rather than elated.. .but you're getting there. Imagine we will be doing rads together...i was reading that virgin organic coconut oil helps skin. May i hold your hand...if I promise not to dig my nails in too hard?!!

Twinset I hope you're feeling a bit chirpier today.. .I think sometimes you just have to surrender to feeling frankly shitty and wallow. It's crap what we have to go thru and being hard on yourself won't help...be kind and head for bed.. tucking choccie up your sleeve!!

Leslie.. .how are you doing post chemo?

Twitter.. .you make me giggke both here and on your other thread...but blimey..what a time you've had. A short snooze over a work call is more than acceptable. Pre diagnosis I now realise my one symptom was exhaustion...i once dropped off in a meeting.. .eeek!!

Chewing...how are you doing

And Argy I appear to have chemo brain er without chemo...hopeless.. so you crack on!!

Waving to everyone...im going to cancer hotel tomorrow so will let you all know how it went!! Xxx

Flippy I hope the last cycle doesn't make you feel too grim. I'm glad it's over and onto the next step, but it's hard to feel like celebrating. The mindfulness course sounds interesting.

freddie I hope you enjoy your hotel trip :)

I'm feeling alright from the chemo thanks. Even managed a little outing to town earlier, and a short walk yesterday.

Waving to you all

Hi Lacies.
Hope everyone's weekend is going OK. I am trying to relax and chill out but having a hard time getting people to leave me alone with the Real Housewives.
Freddie - that is fantastic news. I felt a little emotional reading it and pleased you are having Tamoxifen as I've been reading a few papers, one of which suggested that radiotherapy and tamoxifen is the Gold standard treatment for ladies who've had a lumpectomy. Glad the hangover showed you some respect and ducked off. The cancer hotel sounds intriguing. Look forward to seeing your piece on it.
Leslie - hope the virus is gone and glad you got to get on with the chemo.
Halfbaked - your henna crown looks amazing. Hope you're not feeling too tired with all the ongoing chemo and have has a chance to show off your new head style.
twinset - it sounds like you are doing amazingly to be honest. I know what you mean about not picking up your kids. I've found it impossible not to pick up my daughter sometimes, even having people around to help me. Your comment about it feeling real and having to rely on your husband also resonated with me. When you vow in sickness and in health you always imagine caring for your spouse. It's quite hard to submit to being cared for. Also, I just wanted say that I felt quite low last week too, a week after the op. I think the adrenaline dropped off quite a bit. Things have picked up a bit since then. Not exactly happier, but a bit more numb and level.
Flippy - glad your chemo is over and the cold cap has worked well. One less thing, eh?!
Argy - hope you feel more with it soon. I hate feeling like my brain is all swimming and for me, that's just the after effects of kids, so far anyway.
chewing, royal, pepper, Aussie, Stila, MrsRhod and anyone I've forgotten, I hope all's as well as it can be.

Feeling a bit lost at the moment. I'm 2.5 weeks post mastectomy and really not coping with not knowing what I'm dealing with. I've pretty much given up on it just being DCIS but I'm shitting myself about the potential for it to be in the lymph nodes. My drain came out OK but I now I have a reasonable sized sloshy seroma behind it, which they are reluctant to drain at the moment. It's painless but rank. I still have the dressing on, which is peeling off slowly but surely and sliding down my chest. I was supposed to have a follow up appointment on Monday to remove the dressing and discuss results but I have had 2 letters today cancelling it and pushing it to Thursday after MDT. No explanation why and there's no one I can talk to until Monday because it's the weekend and of course I am freaking out. I haven't seen my BCN since the end of March as she had 2 weeks of holiday, I had 2 weeks of tests, then 2 weeks until the op and then 2 weeks post op. I feel rather abandoned and a bit hopeless of there being anything positive coming out of this scenario. Also, whilst aware that it's probably for practical reasons my new appt is in the "bad news" slot, right at the end of clinic, where there's no one waiting so they have time to make sure you've stopped crying before you go home.
Husband has been great but he has to go away for work on Monday now in time to be back for Thursday and my Mum has to go home on Tuesday too.
Sorry for the vent, I wasn't feeling that hopeful before this stupid letter came this am and now I am royally pissed off. Sorry, again and thank you for reading this drivel x

Deutsch the unknown is always difficult. I hope you'll get some satisfactory answers this week. Try not to panic too much, though I know that is easiest said than done. I know it's difficult having to wait longer, but I personally think it's better to have it that way than get half the information and be waiting for more. They'll probably discuss results at the MDT whatever they show. Mine have always been discussed, even when it was just "scan shows no abnormalities". So it's not a bad sign that they're discussing it, though it is unsettling to have appointments change at the last minute.

I'm sorry your husband and mum will both be away though. Do you have any friends who could round and keep you company of an evening or anything?

No need to apologise about venting here. It's what the thread is for! I think most of us have done it at one time or another. Sorry my reply is a bit garbled. I'm a bit fuzzy.

Deutsch...first of all the biggest hug...tho not too tight over your sore chest. Firstly don't try to read too much into the "slot" when I got my initial BC diagnosis I was changed to first slot so I could see athe surgeon who was down to operate on me (er...noooooo...he was the one who wanted to play "guess the bra size")....but basically it was to fit in with THEIR schedules and nothing to do with us needing time or not.
So doesn't signify anything in particular.
But I can imagine how grim it is still waiting...its the toughest and grimmest thing imaginable. I don't know about you but I feel impotent...and just desperately want to do the treatment asap and feel I'm doing SOMETHING to make myself better. But tho it's hard to trust other people...as frankly no one is more invested in your recovery than you.. .I do believe they DO know what they are doing...so as long as there isn't an admin fuck up (and there isn't here) you will be fine and treated properly.
I hope that makes sense...thinking of you so much.
And um tho sure you will miss the husband...there is always the silver lining of star fishing in bed and more hope of uninterrupted real housewives!!!
You take care my lovely and rant ANY time....i believe we've all done our share of ranting...i know I have...!! Xxxxxxxxx