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Standing outside the dark, dark woods.

jellytot83
Member

Re: Standing outside the dark, dark woods.

Thanks lovely woodies. I am having an SNB. I had nuclear sentinel lymph node scan today in prep for tomorrow. None of the blue dye, just some slightly radioactive liquid to guide the surgeon to the SN tomorrow.
JCJ - no-one's mentioned tummy injections to me as yet. I did have the neulasta ones on chemo so don't know if I'll have to have those too or not
X
JCJ
Member

Re: Standing outside the dark, dark woods.

Don't fret about the WLE, jellytot. I was a day patient too, when I had my WLE and SNB back in February. The actual operation was no bother. I'd previously had a GA to have wisdom teeth removed, and a local to have my carpel tunnel done. The WLE was easiest to recover from!

You don't say if you have to have a SNB? (Sentinel Node Biopsy) That was probably the worst part - having dye injected and waiting around for 3 hours for it to move through to SN, then having x rays and taking them to another hospital for the actual surgery. I went down to theatre at about 4pm (walked down. Very weird but everyone was lovely). I was back home by 10pm, although they probably gave me tea and biscuits too quickly because I was very sick for a while, until they gave me an anti-emetic.

I was lucky because they used soluble stitches internally and a glue for the surface wounds, so I didn't need dressings - other than pads in my bra, and didn't need stitches removing. I also didn't need a drain, but I did have to go back to see the BCN a couple of times a week for a few weeks to have seroma (♫My Seroma (sherona)♫) drained.

I found the worst part was having to inject clexane(? anti-DVT drug) into my stomach every day for a month and wearing those damn DVT socks! It soon passes though. Take each step at a time. I ticked off the 28 injections on my calendar!

My BCN told me to shower 2 days after my op. That was a really scary thing. It seemed way too soon. It took me a long time to pluck up the courage, but I felt better when I had done it and summoned the courage to look at the wounds.

Be guided by your BCN and surgeon. Be gentle with yourself and get plenty of rest.

I hope all goes well for you tomorrow. Just think: You'll soon be rid of the b*****d!! 🙂 xxx
Kayteeb53
Member

Re: Standing outside the dark, dark woods.

it WILL be fine Jelly, you will be here with the rest of us comparing experiences very soon.
hope StayPositive fairy is close by you tonight
kay x
Quail
Member

Re: Standing outside the dark, dark woods.

That's a (((HUG)))Jelly!
PS There's a stiff drink waiting in the JM--you look like you could use it!

Quail
Member

Re: Standing outside the dark, dark woods.

I was terrified when I went in for mx. Even where to go--hospitals are always such a maze-- and if my OH could come with me, and how far. I poured over the hospital website, bought several pairs of new pajamas (I stayed overnight) and you know what: It's just not that horrifying. They tell you what to do and where to go. Everybody was SUPER friendly, super nice, and seemed to recognise that I was scared and unsure of myself. And I must have seen too many Westerns (anybody got a bullet for me to bite?) but I had visions of screaming with pain, and I just didn't. I also had visions of a) the ga not working -- didn't happen; b) me wanting to fight it -- didn't happen. The very nice and (for a bonus) cute anesthestist (spelling?-cba to look it up) chatted to me to take my mind of what was happening and the next thing I knew I was waking up.
Try not to worry too much--it was much less traumatic for me than I expected. It'll all be ok.
Deep breaths, Jelly (cuddle that cute dog?) and here is a << Think of all the knicker's flying high in the Woods--they're for you tomorrow, we are right behind you.
Q

Ali_H
Member

Re: Standing outside the dark, dark woods.

Jelly being scared is perfectly fine! I was, I told the nurses and they were brilliant with me, very understanding. Bravery is being scared witless, but doing it anyway....
jellytot83
Member

Re: Standing outside the dark, dark woods.

Hi Woodies,
I'm off to hospital tomorrow to have the b@stard c taken away.
I'm 29 but feel like such a baby as I'm so scared :s
As I'm having a WLE I'm just a day patient, but having never had a ga before I have no idea what to expect.
Woody Words of Wisdom (WWW) gratefully received.
Jelly xx
supertrouper
Member

Re: Standing outside the dark, dark woods.

Just come back from the chapel in the woods. Everything is looking very christmassy in there now. Lots of candles lit, some in memory of passed loved ones but lots and lots there to light the way through to NED.
Dear Shawshank, I do hope you have captured a sleep fairy tonight...I have sent BRINGITON to help you train to face the next battle that you have to face. We will all be by your side with flame throwers at the ready. "Treatable" sounds good to me. Many many people in here have lived with "treatable" for many many years.
Good night fellow woodies - I am back in my old tent tonight with Buggerit by my side. Trip to Stalag Luft III tomorrow to see Oncoplastic Surgeon to talk about rebuilding what was removed. Hoping for free tummy tuck too.
Sleep well (wafting lavender scent towards the sleepless) xxx

nannabarb
Member

Re: Standing outside the dark, dark woods.

Dear Shawshank, words cant express how sorry I am that you have had this news, but please keep fighting, we are all here for you willing you to fight your way through the woods and find NEDland on the other side.
Rant away ! If you cant rant here, where can you, people 'outside', even family, rarely really understand how hard this is.
Hope you do feel well enough to have a wonderful christmas with your little ones
Barb xxx
GIJaneH
Member

Re: Standing outside the dark, dark woods.

Shawshank - CHristmas is going to be hard for you all... you're so young, it's just not fair/right etc etc... as the others have said, ring the helpline and/or macmillan and/or breast care nurse, and hang on to "treatable".... we have a nurse working on one of our wards who's breast cancer has spread to her liver... Saw her last week and she's looking really good. I know appearances can be deceptive, but she said she felt OK too.... and I know we're all different, just want to encourage you a little..... As SCACO said, we have to live each day to the fullest.... try to take one day at a time, and not panic TOOO much about what's ahead... though I know that's MUCH easier to say than to do!

Have a hug...
Jane

Kayteeb53
Member

Re: Standing outside the dark, dark woods.

Shawshank, hard to give you any words of any use, BUT what you have to do for the sake of your little ones is hang on to that word Treatable!!! You will find the strength to fight this and ALL of us on this thread will be hear to listen when you want to shout at the world.
You hit the nail on the head when you said, what have we done to deserve it, and of course the answer is nothing. It's just bloody bad luck.
take so much care of yourself and come back whenever you need to
kay x
applestreet
Member

Re: Standing outside the dark, dark woods.

RIP lovely SCACO..thank you for the woods.. two fingered flag flying and lacy bloomers..flamethrower going at full pelt for you...these woods..a place of comfort to all travelling on this crappy journey..from dx to after end of treatment and all the fear that brings .. keep me sane some days..Shawshank..don't know what to say..but you mention treatable..hang on to that ..there's lights shining all around you to light the way..massive hugs and remember to come in here for comfort..companionship or whatever you feel you need(((hug))))..apple

Ali_H
Member

Re: Standing outside the dark, dark woods.

Shawshank I'm so sorry, that's awful. I'm sorry I haven't got the right words, or any advice to offer, but I couldn't just read and run. The woods have been a place of refuge for me these last few months (thank you lovely SCACO, rest in peace) and I hope you find some of that here too xx
Quail
Member

Re: Standing outside the dark, dark woods.

Scarey stuff, Shawshank. I'd be freaking out too. No wonder you feel like you've stumbled into the dark woods. We're here for you, though. If you batten down that fear and look around you can see our lights. It's extra bright in here these days as we remember our Founder SCACO, but it makes it a bit more warm and cheery than you might think when first you enter.
You might also want to call the BCC helpline Monday morning. They can do an amazing job of making it all make a little bit more sense as you wait (and wait and wait) for the meeting with the onc. Call the macmillan nurse too, all these people are on your side, it is really what they are hired for!!!! But for those times when none of them are available, come on in to the JM and have a drink and feel free to rant and vent all you want. Here is a big << for you, you deserve it. xxx

21210
Member

Re: Standing outside the dark, dark woods.

2 yrs today that I first entered the woods with my woodies by my side, will forever be grateful to our beautiful leader & creator of the dark, dark woods SCACO, I think of her often with both love & gratitude & miss her humour & strength very much.xxxx

Guest user
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Re: Standing outside the dark, dark woods.

dont no y that repeted sorry x
Guest user
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Re: Standing outside the dark, dark woods.

hi all
just out of hosp went to c my onc for scan results on thurs 13th but ended up going in early 4 bloods taking as felt like i had flu n wen they took my temp it was 39 so had to stay in came home sat 15th any way its thursday i feel totaly shit n b4 i c my onc i c .........dont even no who she was but me n my partner r ushered in to her room where the nurse stays n a mcmillan nurse cums in to us so we no its gonna b bad news n considering how ill i felt i wasnt gonna understand or fully take in wat they r about to tell me but just being told its spread, to lungs and liver. totally gutted cant get my head round it feel like im back at square one crying again just so scared cos dont no wat it means or wat happens next as only had one cycle of fec now been told il b havin dif chemo but it been delayed cos of been ill so will b after christmas ......i supose at least now i shouldnt b feelin ill so should get to have a good christmas with my beaufifull kids just want to no wat chemo im gonna have n y i prob wont have radio now just remember her sayin il have more intense treatment n 4 longer sooo gutted cant believe its now in liver and lungs just wen i was getting on with it n looking 4ward to christmas they have to throw this at us been told its spread is worse than been told u have it in first place n iv got this awfull bloody cough sorry 4 rant just feel soooooo bloody scared all over again my kids r stil so young 5 nearly 7 n 8 want to b around to c them grow up love em all so much cant understand wen they say its very agressive but treatable good job i have anothet ap with my onc on 20th cant cum quick enough just want answers to questions i dont even have yet lol could do with a bloody good drink but imnot even up to a virtuall one at min whys life so bloody hard n shitty wats any of us ever done to deserve to b goin through this cruel shit x
supertrouper
Member

Re: Standing outside the dark, dark woods.

Just back from the cinema. Watched The Hobbit - wonderful film and the simple line drawings of middle earth etc made me think of our virtual woods. My two fingered flag is flying high above my tent tonight in memory of SCACO (Karen) - this thread saved my sanity and brought some wonderful angels into my life.
Bless you all and lets all pray for miracles this Christmas xxx

jellytot83
Member

Re: Standing outside the dark, dark woods.

Flame light an burning bright, winter Pimms' a plenty clinking at the JM x
nannabarb
Member

Re: Standing outside the dark, dark woods.

Never knew SCACO, but so glad she started this thread, such a safety net for so many, Rest in Peace Karen, my two fingered flag is flying high tonight xxx
Guest user
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Re: Standing outside the dark, dark woods.

Thinking about you Karen. You are often in my thoughts. Your thread lit our treatment and your warmth in real life kept us seizing the moment with you. Wish you were here with us and with your loved ones. Miss you lovely SCACO x
GIJaneH
Member

Re: Standing outside the dark, dark woods.

I still think of SCACO, and every time I check this thread, I see the beginning, and her inimitable courage and humour/ She could never have imagined how much of a life-line it would be to so many of us.
Karen - we salute you.. and miss you...
Jane

Kayteeb53
Member

Re: Standing outside the dark, dark woods.

SCACO I salute you! You described it just as it would be and we have followed your light!
Thank you
kay x
Alto
Member

Re: Standing outside the dark, dark woods.

Today is two years to the day from my DX and two years to the day from SCACO first writing about the Dark, Dark Woods.

Woodies all, please light your flamethrowers, raise the two-fingered flag high and make sure your merkin is playing the Star Spangled Banner in her honour. Then get down to the JM and raise a large glass - I'll be raising a very real one shortly.

Karen - we'll never forget you, our beloved and inimitable SCACO. Thank you for leading us through the woods.

Jane xxx
GIJaneH
Member

Re: Standing outside the dark, dark woods.

I washed my wig at night, hung it on the shower head and it was ready in the morning... ! (Just remembered it was summer though, so that might make a difference!)

Kayteeb53
Member

Re: Standing outside the dark, dark woods.

I skipped off last night to see The Hobbit, didn't finish until 10.30. By the time I was home there were a few dozy sleep fairies stumbling around, I grabbed one and tucked her firmly under my arm. Fortunately she gave it without too much trouble (might have helped with me whispering 'my precious' in her ear.
so a good night for me and now off to the shops with my daughter for Xmas shopping. Just popping into the JM for bacon sandwiches before I go.
having a day in tomorrow as wig needs washing Lol
have a good day all
kay x
GIJaneH
Member

Re: Standing outside the dark, dark woods.

Morning Woodies! Been busy in the land of NED, so popping back in to say hello to you all (hope Morwenna is recovering gently) (By the way, newish reasearch says not to lift the arm above shoulder height for first week, despite what the exercise sheet says - reduces the risk of lymphedema - just thought I'd pass it on, since I was VERY diligent, pushed my arm up the wall at an amazing rate of knots, and now have lymph!)

bacon calleth....... mmmm..... Hi Katy.....
have a great weekend all - I'm on call and hoping it'll be quiet...
love
Jane

supertrouper
Member

Re: Standing outside the dark, dark woods.

Cancer stuff should always be put aside once we enter the woods, after all this is what this place is here for isn't it?
I have tinsel and lights inside and outside my tent and used the telehandler from Benchland to put all the twinkling lights up high into the yew trees. Hope they don't keep the people who are nesting up there awake!
I think I have caught a sleep fairy in one of my jars tonight so I am off with my prize........sleep well fellow woodies

Guest user
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Re: Standing outside the dark, dark woods.

Hi Morwenna wishing you speedy recovery.

Well i've got a huge christmas tree in my tent and lots of sparkly lights and tinsel in the trees around the wood so we are officially festive. So how's everyone feeling about Christmas? Anyone else torn between putting all the cancer stuff aside and trying to enjoy it and feeling really not in a mood to be jolly and see lots of relatives (really don't want to have to make an effort every day to put on wig and look respectable, but not going to try and explain to my nephews why I have no hair). Personally I just want it to be over as my first rads planning scan is on the 31st Dec so wish it would all get a move on as this is the start of the final leg.

Anyway, I'm off to skip down to the JM with my bottles of Baileys, tia maria and cointreau as I feeling in a mood for cocktails tonight.....will be going via the deep gorge by the woods in search of an elusive sleep fairy. xx
Kayteeb53
Member

Re: Standing outside the dark, dark woods.

Oh Morwenna, thinking of you, hope all went well
kay x
Morwenna
Member

Re: Standing outside the dark, dark woods.

What a great thread .. haven't ploughed through all 9541 posts yet, but no time this morning!
I'm just off to the hospital for my mastectomy: LetsBeHavingYou! is my friend this morning! 🙂
nannabarb
Member

Re: Standing outside the dark, dark woods.

Hi Caroline, have messaged you xx
Caroline60
Member

Re: Standing outside the dark, dark woods.

Hi nannabarb, I realise i have had the same diagnosis as you. I was both DCIS and Lobular. Im also HER2 positive and er and pr negitive. With 3 positive nodes. I thought I was the only one as I couldnt find anyone on this site with the same or similar.
Caroline60
Member

Re: Standing outside the dark, dark woods.

Hi ladies, can I just say you are such an nice bunch. I know your advice to others has assissted and helped them. I still think this thread is bonkers though.
Kayteeb53
Member

Re: Standing outside the dark, dark woods.

Great to hear you are feeling more positive Angik. That's half the battle isn't it? I sometimes have days when the family say 'your halfway there' after FEC3 but when I can't catch the Positive Thinking fairy, I think 'but three more cycles of misery to go'
think Christmas does help us all
popped into the JM and stocked up the extra large knobbly Twiglets
see you later, hugs to all
kay x
Guest user
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Re: Standing outside the dark, dark woods.

Brilliant poem 🙂 think I must have spent to long in the JM was broken yesterday:( 1 too many I guess but was feeling quite grand abouut work and spoiled myself with a drink and can safely say not in a hurry to do it again.
Looking forward to getting the christmas tree up this week and finishing off my christmas shopping feel much more positive about things at the moment and the crying has been much less over the past couple of days so hopefully the tamoxifen is settling in
Have a great day everyone hugs to all
Angi xxx
nannabarb
Member

Re: Standing outside the dark, dark woods.

Love that poem Mezzomamma, just popping into the JM for a nice large Baileys (mines not out of date, never have it long enough for that to happen 🙂 )
Sleep tight ladies xxx
Mezzomamma
Member

Re: Standing outside the dark, dark woods.

Has anyone else been listening to Poetry Please on Radio 4? Someone, perhaps Roger himself, has just read Five Ways to Help You Pass Safely Through a Dark Wood Late at Night By Roger McGough (From Roger McGough – Collected Poems). Pick it up on IPlayer for radio, about halfway through, if you can. I won't spoil the punchline, but SCACO would have loved it.
http://www.bbc.co.uk/programmes/b01p6szg
You can find it through Google books as well: http://books.google.co.uk/books?id=hteooTTpvsYC&pg=PT386&lpg=PT386&dq=Five+Ways+to+Help+You+Pass+Saf...#

Kayteeb53
Member

Re: Standing outside the dark, dark woods.


Thank you for the Sominex tip, off to Boots tomorrow
Kayteeb53
Member

Re: Standing outside the dark, dark woods.

Hi all,
loving the poem VJ, needs someone to set it to music so we can sing around the piano in the JM. Did you have any music in mind?
am off to the JM now for a virtual drink, Baileys Latte and Twiglets sounds good to me!
kay x
Caroline60
Member

Re: Standing outside the dark, dark woods.

Hi ladies, please google this newly trialed bc drug its called Perjeta.
GIJaneH
Member

Re: Standing outside the dark, dark woods.

Brilliant Poem!!!! love it.... sleeping on steroids is rubbish. I asked for (and got) Zopiclone, which DID help. Only took them when desperate. If you're into tablets, the Sominex ones are good (also, not 2 nights in a row)... It's all hard enough to cope with, without being exhausted too..... my oncologist was fine about that...

but the poem's so good - you didn't waste the time!!!

Who's up for a snifter in the JM tonight? Having a quick one before we go out for dinner with fiends (or friends!)

love to all in tents tonight
Jane xx

Guest user
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Re: Standing outside the dark, dark woods.

Thats brill Angi, nice positive way to start your new year off.

Here's a little rhyme created in the wee small hours while trying to nod off .......

O sleep fairy, sleep fairy high in the sky

Above the tents in the dark wood do you fly

Not a thought for us girls in need of your spell

As we lie awake worrying all is not well


O sleep fairy, sleep fairy we watch you prance

As in out tents we do the duvet dance

If only you would flutter within our grasp

Your precious wings in our hand we would clasp


O sleep fairy, sleep fairy caught you at last

Into a jam jar and seal the lid on fast

Come back to my tent and stay here awhile

Already I'm relaxed and happy with smile


O sleep fairy, sleep fairy how magical you seem

For now when I lie down at last I dream

And as I fall into a deep, deep sleep

Your mystical ways I would love to keep


But sleepless woodies don't despair

I'll not keep her long, it's only fair

that the sleep fairy spreads here magic around

So don't worry girls you'll soon by sleeping sound xx


JCJ
Member

Re: Standing outside the dark, dark woods.

Glad it went well, Angi, take it steady. (With the phased return, not the drink or 3! :))
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Re: Standing outside the dark, dark woods.

Well my visit with my boss went really well I have been of work since the 9th of May so the thought of goong back has been worrying me but now I've been in and had a chat am quite looking forward to it am not going back untill the 7th of Jan and it's a phased return at my pace which is great so to celebrate I will join the ladies in the JM for a drink or 3.
Hugs to all Angi xxx
Ali_H
Member

Re: Standing outside the dark, dark woods.

I didn't sleep on the steroids either, sorry. I used relaxation and meditation techniques instead to try to relax, but not always successfully
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Re: Standing outside the dark, dark woods.

I'll try a mix of lemon and chocolate cake - how could any fairy resist??

Sleeping on steroids is impossible - I asked for sleeping tablets from my onc while on the high dose steroids, they gave me tamazepan and I still didn't sleep. Just downed several glasses of wine tonight so I'll let you know how that goes!!

Can't wait to see the zebra print onesie, I shall put on my leopard print onesie and we'll have a wild jungle theme down the JM tonight......
Kayteeb53
Member

Re: Standing outside the dark, dark woods.

Hi all.
was desperate for a sleep fairy but the raging St Eroids kept them away. AND with the website down I couldn't commiserate wih anyone at 2 am.
needing a visit too the JM tonight. Have baited my traps wih lemon cake made by the Nigella fairy, mind you I wouldn't t recommend her, she makes such a mess and eats most of it! If I get a spare I'll send them to your green tent VJ. Fingers crossed!
Any recommendations for sleeping while steroids are doing their worst? Any alcohol related ips, and others of course, welcomed.
off to my hot tub now, zebra print onesie is nice and clean, ugg boots brushed, wig at the ready- see you all later!
kay x
Guest user
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Re: Standing outside the dark, dark woods.

Have a good party jelly, I'm off out next week - have bought some false eyelashes for occasion, I'm not a girly girl so this this could be a disaster..... any advice welcome. I'm having enough problems trying to draw on two symmetrical eyebrows......

How did you go Angi? I stopped work back in June, thought I'd work through the chemo but - ha ha - how naive I was. Had another surgery 3 weeks ago and rads in Jan so not intending going back until its all over. Took a lot of getting used to not being there, but getting terrified of the thought of being back and its another couple of months away yet.

Still searching for an elusive sleep fairy, if anyone has one going spare please send it my way - the green tent next to the silver birch with the decking, hot tub and fairy lights everywhere. See you all down the JM, think its time to break out the Christmas mulled wine ........ Vx
jellytot83
Member

Re: Standing outside the dark, dark woods.

Hi Woodies, I've been locked out of the woods/forums for a week 😞 Stupid forum gremlins.

Hope all is good, I have my work party tonight, we're going to a nice hotel and I plan on having a few gins 🙂

Gonan have a swift one in the JM first tho x