Ok, here I am lurking in the fields on the edge of the wood and have been trying to be brave and watching all of you amazing women marching on through and hoping that I could start my journey and get my honourary merkin but here I linger!! Can I join you??
I have had 2 weeks recovery after a re-excision (original WLE and SNB in Jan), and was supposed to see my team on Monday to plan the next bits but had a phone call 2 days ago to say, Sorry but the’clear margin fairy’ (not their words obviously!!)still not there,after 2 attempts…WTF is that all about, how hard is it to find it all!!!, and now more surgery required… So now decision as to whether I have another re-ex or a full mx…
I know many of you have already been there and some not even had the option, but feel v. anxious. Am continually trying to be ‘up’ and bright and cheerful for elderly mum who now lives with me and darling OH, who is very supportive but am quietly feeling low and a bit teary.
Anyway in danger of losing way to the woods and feeling a bit panicky and tired of keeping my own fire and tent ready and feeling a bit alone.
Anyway just wondered if I am allowed to join as I’m still in the ‘cutting room’ and feeling fed up…
Having plans changed is very un-nerving and not helpful in the middle of a stressful situation. I have had the RADs word turn up this week and all that entails, which wasn’t a definite for me.
Bring your tent closer, you don’t need to be on your own. Please collect obligatory flamethrower and merkin and join us in the JM late for a gathering.
Hi Wandy, Of course you can join us. We all wish we were beyond the woods but anyone who needs cheering up and a bit of advice along the way (and who doesn’t mind it being from a quirky crowd of middle aged women) is welcome in here.
Ahh the Clear margins fairy… Both CM and I looked for her long and hard. Sorry you haven’t found her as yet. I eventually did after one re-ex but like you spent a while thinking what the options were if I still needed more surgery. I found a woman who had had three surgeries and was headed for a fourth and others who are pushed into mx after one re-ex.
I guess we are all a bit different in what our dx is, what size and type the bc is and, where it is located and without putting too fine a point on it, how big the area is in proportion to ones original cup size.
The sense I got from them was that they would have done a second re-ex and maybe more without too many problems as the total area was still leaving a fair amount of tissue. Others have had different experiences. I had decided in my mind that I would certainly go for another re-ex rather than mx and keep doing so until such time as they told me that they thought I ought to have an mx. Of course you may view this completely differently and want to get it sorted… I found that I was much more attached to my right nipple than I had ever realised and didn’t care whether they scooped me out like a melon provided it was still there.
I have been told that my now larger dent is apparently something which can be pumped back up using lipo to redistribute my orange peel cellulite.
Did they give you a sense what they were recommending? I got the feeling they were not saying you needed an mx yet? Also, did they tell you how many margins / what is not clear? Mine was DCIS which is hard to see though the original cancer had gone. I felt a bit reassured by that because at least the bc had gone, and I had one margin not clear on the outer edge (they took another cm out on that edge). You might get a better sense of how confident they are about it being clear this time??
Sorry you are in this position, but if we can do anything to help we will xx
Wandy, plenty of room in these here woods - grab your tent/beer/wine/sleeping bag and come on in. And if you haven’t yet got all your supplies and equipment, then we can find spares.
Clearmarginsfairy is a tricky beast - and leaves you in a horrid position with no ‘good’ decision to make. Best of luck in deciding what is best for you to do. Mx not so bad as you might think… but for me I just wanted the whole lot gone anyhow. Wise choice in retrospect, as still inadequate clear margins, so rads to chest wall coming up - but at least it was just the one op. Can honestly say that mx is prob. the neatest, flattest part of my body at mo!
Sarah - it was indeed a star spangled merkin, and the battery is not yet flat as it is still merrily chirping the star spangled banner whenever any vibration catches it… it’s hanging around the Baileys in the JM, waiting for you to reclaim it. The other one was unfinished and looked like it was intended for St.Patricks Day… so may now be redundant as owner should not still need it by next year. Prob. just as well, as I’m not convinced green is the best colour to sport down below. Keep off the grass etc etc…
CM - FEC definitely brings on the munchie monster. I had been quite paranoid that actually I had just turned into this enormous ravenous eating machine, until I had TAX and discovered that I could quite happily live without ever eating again. Well, sort of. Back on FEC again and once more eating for England. And the rest of Europe. Part of it is that the only time my mouth doesn’t feel vile is when I am shoving food into it - and savoury is best. Mmm. Crisps. Back in a mo…
Noooo lost the plot I just posted a good few paragraphs and it hasnt come out on the post, now I have to start again, where did it go? I welcomed anyone new, Wandy, and sympathised/empathised with CM cos i lost my FEC cherry last week too!!!
Hey silvershar - I’ve been thinking about you and hoping that now you are actually ‘in the woods’ so to speak, that it doesn’t look quite as dark and spooky? How are you feeling? How’s that gorgeous dog of yours?
Thank you all you amazing girls for the welcome!It made me cry a bit which just shouws how near the edge I am. I NEVER CRY!
I will stop in and get all my supplies, flamethrowers and all!! Will edge the tent a bit closer and will definitely join anyone for a ‘petit vin rouge’, (I live in France part of the time!)
MG, thanx for your lengthy response. Original cancer was Grade 2 dumbell shaped multiple tumour invasive ductal carcinoma with no lymph node involvement. The margins were supposedly clear after 1st go except invasive tumour still found at the deep and nipple margins. I am back on 28th for full path report on why they have not been able to excise this area properly.
Healing 2nd time around internally has been horrendous. V.V. painful, very bruised and am now like you strangely internally shaped. However like you am quite attached to nipple area (very connected to head office!!), and if I can I would like to preserve. I am not a tiny girl so I think if I have the choice I will go again for another go and live with the weird shape for the time being! OH says whaterver works for me works for him and is being v supportive in a quiet not saying much kinda way!
Will know more in 10 days. Its the waiting and waiting which is hard isn’t it?
Anyway will gather strength from you all,read the whole thread while its been down and feel I know you all really well and am soo glad its back up for the time being,felt quite bereft without you all…
Am also a writer and a retired PR specialist with connections to literary agents so if you all need any help getting your book idea off the ground am willing to help there if I can…
My bagpipes are all bagged out at moment! Not sure if I’m allowed in the woods as I’m in a very bad mood! I hate hospitals!
Despite Neulasta my neutrophils dropped to 0.54 - single room in hospital for 3 night. Consultant wanted to see me on Wed prior to fec 3 - became breathless and spent 5 hours in A&E until 01.00am!
AS a result fec 3 postponed for 1 week and instead of 1 neulasta jag each treatment have to take 1 per day for 7 days.
Where have all the fairies gone, Long time passing!
Where have all the fairies gone Long time ago
Where have all the fairies gone
Gone on stri-ike every one!
When will they come again
hope it’s tonight!!!
Wandy! Sure we’ll all be great by tonight!I’ll dust off the bagpipes
Scaco Still got my eyebrows and hairy legs- didn’t have the heart to shave them- only hair I had left! much to my embarassment when the handsome young doctor came to clerk me in in hospital!
Feeling better already so might have a Cointreau and lemonade later as well as any champers that going!
Margaret X X X
Sooo good to see everyone am just off to find Troy, Alto, Alimbutt & TSR, cannot have that party tonight without them, see you all in the Jm later & for those with the worrygremlin or steroidgremlin unable to sleep, i will see you after closing at the campfire, hot chocolate all round for everyone & may whip up some toast for those that are a bit peckish.
Trip, so glad you found my merkin, am definitely not the owner of the half made green one
I’m sure you can go into the woods whatever mood you’re in, from what I’ve read on the whole thread you must go in and get a few drinks in at the JM.
I’m going to stay camped on the outside for a bit longer but will be making forays into the JM and getting all my kit so that the path doesn’t seem so scary, and I will be on clearmargins and any other fairy lookout for the forseeable, so will hunt them out for everyone!
You’ll find me up by the corner of the JM on a stool with a red vino clutched in one hand and the ACME Detectofairy in the other!! Salut!
Hi Wandy, and welcome to the woods. It looks as though there’s a party on tonight if you’re up for it. (Cushions and duvets are provided for anyone who discovers they just need a snooze in the corner.)
A good imagination is a real plus: we’ve got the yurt, the tree house and the tropical lagoon for comfort and virtual parties, to say nothing of all the fairies, witches and gnomes that we welcome or attack.
Thanku for the welcome, will definitely come to the party!Do I need to bring anything? Will be a bit laden anyway with all my new kit courtesy of Scaco but where I live in France part of the time have a barn full of Sloe gin which I could whisk over to slurp round the campfire after the JM is shut for the nite!!..Or is it a lockin??
I think i have found Troy, her response to the woods being open again was & i quote “I wondered why my BB kept vibrating on my desk at work” hmmmmm the plot thickens
Sorry you had such a bad time on first Fec CM - That Emend will sort you out for next time. Hope you’re feeling much better. I was only a bit nauseous with Fec but had no appetite for a week and lost half a stone - put most back on in following two weeks.
had last TAx yesterday, so SEs will kick in over the weekend instead of straight away like Fec.
Hello again, Merry Merkin Maids,
I come to the woods with glad tidings!
I think that stray merkin Trip found may have been mine. I disgarded it, because yesterday, I found some ‘green shoots’ of new growth!! Yes ladies, it must truly be Spring when even the lady garden starts to recover from a long, cold winter! Now it IS early days, so I won’t break open the champagne yet…but still, a small step.
To go with my new pubes, I also have a new boob, curtesy of the mx fairy. I am yet to see that there any advantages to having a removable breast, but am sure, given time, someone will come up with some? Trip? You are usually up there with the black humour… I know you have one of your own, which gives you special privileges in unseemly, and downright non PC comments…
I am hoping that even though I have now progressed through the evil, bramble infested, and nettle ridden part of the woods that is chemo, I am still permitted access to the JM etc, whilst I progress through rads? I promise to hold sick buckets, make up hot water bottles, and pick up CM’s hula hoop packets…
Tracey
Welcome back Margaret, sorry you have been having a horrible time, sounds like the thread reappeared just in time for your return from solitary confinement.
Shar, hope FEC1 went well and that you are feeling ok?
Welcome back everyone else!
Wandy the book project is alive and well in the temporary camp we set up in the last couple of weeks. Authors and advice always welcome… Sloe gin sounds good and i am right with you on re-ex first its an option. That said i would gladly have signed an mx consent form and lopped off offending appendage straight away at dx. I can see the comfort in knowing its all gone though rads and wle had same prognosis, I was told that medically it would be the same difference. Dumbell shaped, now that’s a new one on me. I’m a tubular girl myself.
Glad everyone is finding their way back. I am also someone lurking in the woods who isn’t having chemo. We are all here with different treatments but the woods welcome anyone who needs to pass time and find liked minded people along the way. Funny how we seem to have attracted so many authors, teachers and creative type of people.
Is the JM open yet. When I was chopping away branches earlier on I was sure I could see its sister hostelry the Twisted Nipple just beyond the edge of the woods xx
Tracey, I didn’t think I would ever find myself in the position of congratulating someone on the growth of pubic hairs but great news (I think!?)Guess you don’t miss something til its gone though I’d gladly wave my excess body hair away, just thinking of the time saving x
