Me again, How's the recon going Ninja - I'm still putting off making that decision, don't fancy the back flap, which is my only option apparently... with sore ribs and still wearing my softie pinned into a bikini top (can't make friends with prosthesis or mx bra's being too uncomfortable)....I would love to know how the expander procedure is going. I'll need this if I decided to go ahead with it all. I also developed lymphoedema (following an insect bite whilst on holiday), so just struggling to manage that in my bad arm. Hair - apart from lack of it on top still, i mainly wear baseball caps and still have to wear the wigs........ there is no hope on that front anytime soon - chemo induced alopecia apparently.............. stopping tamoxifen may encourage the hair, but the chances are slim to none............. E-mail alerts - I've not had any - need to sort out how to get those. Wishing you all the very best for 2014 Bev x
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Hello lovely May ladies, I haven't been on here for ages but have thought of you all over the past year or so since I was last on here. I'm going to go through the thread in more detail to catch up with how you're all doing. Wandy - Hawkshead - brilliant - we have a place in Torver, just t'other side of Coniston and often nip up to hawkshead for some chutney tasting at the relish company - we're there every 2 weeks or so in Winter and every weekend in the summer (my other half likes to fish and sail on coniston). We went to brantwood the other week, our friend is an artist and has an exhibition on there at the moment. Would love to meet up for a coffee or a guinness some day..... Glad to find that some of you are still on here as thought I may have lost touch with you all. My news - hair still not come back, just had all clear from bone scans and mammograms following minor scare (paranoia) before xmas, still not working, aching and hobbling like a 70 yr old, not gone through menopause (was told I had) so keeping on Tamoxifen and the wonderful gifts that keeps on giving... Will post again when i get up-to-date with you all.
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Thanks ST, think I've managed to ask to get in on the FB groups eventually - hope you're doing ok hun, especially if GIN is helping the countdown to xmas, your link looks fab (if not expensive), I'd just go for a glug a day or even take the marker pen to the bottle to divide and stick a teat on the end....
Ali H - enjoy your rad-free day
Need to catch some sleep fairies on way back to Tam Towers, if anyone has got a spare one, would appreciate a lend for an eve - would love an uninterrupted night of zed's for once.
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Sorry that you find yourself on here, but you will find that there are lots of lovely people on here who can help/guide/support you through your journey, of which is uncertain currently and I'm sure this is completely screwing with your emotions at this time. Many of us will completely empathise with where you are now, it truly is the worst place to be, in the waiting room.
It is difficult to cope with, and is easy for me to say this now, but try to keep yourself busy until the 14th, when you should have more information from your specialist teams. I did find listening to my ipod and singing (badly) at the top of my voice helped, plus I was diagnosed 2 days before I went on a skiing holiday, so that took my mind off the waiting for further information for a week.
The whole journey does begin to settle once you have more info and have a treatment plan in place - take someone along with you to your appointment if you can, you mind goes into overdrive and soemtimes you can forget important bits of info, and write down any questions you have now to take in with you.
I cannot say when your surgery will be, only your team can decide this.
I'm sure there'll be other ladies along to give you further advice soon.
I hope all goes well with your appointment and be gentle with yourself, come on here if you have questions or if you just need a rant or scream or even a laugh -
big hugs to you
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I had mx was in overnight and came home next afternoon with drains.
I had node clearance and insisted on leaving hospital and came home the same night with drains, not a big fan of hospitals, so wanted to be in my own bed.
Advice - I found front buttoning nighties / mens shirts oversized ladies shirts were the easiest to wear and elasticated jogging bottoms / linen pants (could pull on and off with one hand). Not sure if you've sorted post-surgery bra's, but I found pinning the 'softie' into an old halter-neck bikini top was the most comfortable for me - and still is.
Agree with Shazzaboro, do the exercises religiously, you will benefit from this longer term. If you can get the booklet off this website, have a look at them and practice - you'll know what your arm movement range currently is and is something to aim towards, plus they'll become second nature to you if you practice beforehand.
Drink plenty of fluid in the days running up to your op to be as hydrated as possible - nil by mouth (usually from the night before) means you'll be dehydrated (and can give rise nasty headaches) and when you come around, drink plenty of fluid to flush aneasthetic out of your system and get you back on track hydration wise. Keep on top of pain-killers that they give you, I found it easier to keep them in my system than waiting for them to 'kick-in' once I was in pain, so took them routinely for the first few days post-op.
Post-op I slept with a teddy bear on my chest to create a 'tent-like' effect to keep most of the weight of the duvet off my chest. I drank plenty of fresh fruit smoothies with added protein powder - protein I believe is necessary for the body to repair itself (and had these through chemo too). Within 2 weeks I felt normal post-op and overdid things and put my recovery back by a couple of weeks, so be gentle with yourself and take your time to recover fully and properly. Cording and nerve pain regeneration can be strange pains/sensations to contend with in your 'bad' arm post node clearance and every one is different, so you may not experience at all.
I had post-op physio for months as standard where I live, helped with cording issues and kept on top of getting arm movement range back - if you don't get this as standard, get your GP to refer you for this if possible.
There are some other threads which you may find on here with other useful tips, but hope that this helps a little in the meantime.
Good luck for your op and message me if you need further info, I'm not on this site so often but will pick up my mails.
Good luck for starting chemo Shazza, hope your SE's are minimal too
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I had 6 x FEC-T and I went to Tenerife 5 weeks after finishing Rads, but I only booked it after my Rads had finished as unsure of how tired the Rads would make me feel, the peak effects takes about 3 weeks to kick in from each blast from memory. I also went skiing 4 months after Rads. I didn't have any delays with my FEC-T or Rads.
My travel cover excluded any breast cancer related claims - I took the risk of not getting any additional insurance - I did question my insurance company that if I broke a leg or arm etc whilst skiing would I be covered - answer was yes.
Treatment affects everyone differently, I was tired but I walked for a mile or so every day in Tenerife, ate like a horse, hired cycles and swam every day, you will know where your limits are and you can do as little or as much as you feel is appropriate for you.
I hope you make the right decision for you and it is nice to have some R&R once treatment finishes and something to look forward to as Alto pointed out.
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Hey there woodies,
Been locked in Tam Towers for far too long and missed too much of the shenanigans going on in here - glad to see a few more woodies have found their way back and the pathway through the woods is still lit for those treading it's worn walkways, but I've still not completely made 'friends' with this new site. Could someone please send me a link to the facebook group as I still seem to keep getting lost in here - that's if I'm insane enough to join you ha!
Whilst I've escaped the heating fluctuations in Tam Towers (that boiler man needs shooting) it'll be rude not to skip down to the JM for a cheeky snifter or 3!
Stunning dress Jelly
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Hello may buddies,
Hope you're all doing well and by the sounds of things, most people are getting to grips with life again, and I will look to read back over our thread over the next few weeks, to catch up with everything that I've missed over the past couple of months.
Sorry I've not posted in such a long time, but still think of you all often, and wanted to check-in. Glad to see we're all still popping in and out on occasions. I've been busy doing a bit of consultancy work in the Lakes and eventually managed to get some courage to book a last minute short break in Dubrovnik a few weeks ago, and booked to go to Tenerife with the family just before xmas - Tam's flushes have put me off going anywhere too warm, will just have to 'suck-it-and-see' in Tenerife.
My hair still isn't growing normally (gremlins mohican is my style at the mo - and not by choice) so still using wigs/hats/bandanas (pffft) and it doesn't look like it is going to ever come back on top (or it may take a few years).
I saw my breast surgeon recently as I've eventually been handed back to the breast care nurses (just had first check-up too) and I now need to make a decision on the reconstruction, if and when - I can honestly say I've only just about got over the treatment trauma since finishing Herceptin in July (even though Tamoxifen still presents it's own side effects) and seem to be suffering from extreme fatigue / emotional swings and achy joints, to the point of not sure if I can make that reconstruction decision and go through more treatment just yet - would like a small period of 'normality' first I think.
Sorry to hear the news of your Mum, Cherry, and I too am looking forward to really spoiling my 3 yr old nephew this christmas, especially with us not having kids of our own - it is also not our turn to cook for the family this year, so we can really relax and enjoy this one.
Hope there is good news on scans/check-ups for those currently suffering/worrying - I agree with Wandy on the Bernie Nolan story, after everything we've been through, there is always going to be the odd 'curve-ball' that will throw you off course (hopefully only emotionally) once in a while.
It would be good to meet up and put faces to names too.
Take care and much love to you all
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Just wanted to echo what others have said Keyfeatures, don't look too far ahead re:treatment and I found Herceptin to be absolutely fine compared to chemo.
I have just finished my 18th Herceptin and yes looking back (or indeed forward) from when my journey started in March 2011, it does seem a long time. Cancer and it's treatments may have slowed me down a bit, but I've made sure that it wasn't going to stop me.
After my 4th chemo (1st TAX) I went to a local dance music festival (not one of the field varieties) and partied until 2am with friends despite sore TAX toes, I went to Tenerife 10 weeks post chemo (6 weeks post Rads) and cycled and swam everyday. I managed to go skiing again in March 2012 (1st anniv of dx) whilst still on herceptin and skied everyday (not for as long as I usually do though).
The only thing that the treatments did stop me from doing was Glastonbury last year - I go every year that it is on and was gutted when I had to give up my tickets as would've been mid-chemo (I'd managed to get 34 for my friends/family and was the only one not allowed to go - some stayed behind with me though). I'll be hopefully getting tickets this October for next year instead - something to look forward to.
Love the 'how do you eat an elephant' Mandy, it is so true - has your port gone yet?????
I'm loving watching all of this olympic acitivity and my other half said that if there was a gold medal for being lazy - I'd win - pfffft. However, all of these fitness / stamina displays are quite draining and all I can say to that is - pfffffft again.
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Just popped in from May 2011 thread to see how you all are doing.
Sorry some of you seem to be suffering horrendously, so I would like to send big hugs (and gentle squeezes) to you all.
Hang in there girls, you're getting there, but as I remember well, the closer the end came...the further away it seemed, as the chemo and its cumulative effects begin to take hold and it all seems to drag on.
I remember wanting to slap my friends and family as the home straight was in sight and they kindly kept reminding me..."ONLY 2 more to go", or "last one around the corner", sounding like it was a "walk in the park" as my onc referred to my experiences, when nothing is further from the truth.
I have just finished my Herceptin marathon last week, and for those of you moving onto this and/or Rads after chemo, both are sooo much easier than what you're all going through at the moment.
Be kind to yourselves, enjoy the olympics and remember, baby steps....one day at a time
Much love to you all,
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You may well be having the daily injections (filgrastim) and not sure if the neulasta (pegfilgrastim - one injection and more expensive than the dailies I think) is suitable for you or not. Ask your onc the possibility of having the one injection - I had the district nurses come to do mine at home on Day2 as couldn't face injecting myself - it is a tiny needle though and I'm a bit of a woos, so complained quite vocally when things didn't suit me - I'm sure my onc thought I was a pain - but no pain no gain eh??
Can you take the injections home and administer yourself rather than traipsing back to the hossy - I wouldn't want to put myself in a hossy environment when threat of being neutropenic is on the cards (I even tried to stay away from the docs) - can district nurses come out to your home instead - might be a question worth asking when you see your onc tomorrow?????
I believe pineapple works well for sore mouth too, I bought some in juice form and used it like a mouthwash, in addition to the nystatin (oral thrush) - maybe ask if you can get some of this from your onc/chemo nurses too?????
Taking bloods, don't know if you've tried a wheat pack/hot water bottle to open your veins before they take your bloods - hope this helps, if not, can't really suggest anything further, but it worked for me and I didn't have to have a picc/port inserted - even through the 6 chemo and 18 herceptins - it was touch and go a couple of times though.
Try to take comfort that you are not alone in how you are feeling, sometimes it can get quite desperate when you don't know which way to turn or how things will go - it will be what it will be, keep posting, you may find that there is one snippet of info/advice that may make the difference to you and being in control of it, and not it controlling you.
You will get there, I remember feeling that the closer I came to the end of chemo (especially TAX), the further away it felt. Almost an unreachable point and couldn't see the end of it when deep in the middle of having soem miserable days. Hang in there, the down days will pass and good ones are just around the corner - don't try to stay positive all of the time, sometimes it is good to get some grief out and wallow a little from time to time - we've all done it.
Try planning a night in with friends/family/partner (DVD / game/ catch-up) night for one of your good days before the next chemo - it is good to have a little something to look forward to through all of this.
Take it easy
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Just lost a long post aaaaaaaaaaarrrrrrrrrrrrrgggggghhhhh! Will try to post a smaller update.
Thanks for the reassuring (in a wierd way) words Jude.
My other half said that if there was a gold medal for being 'lazy', I'd win it - pfffft. I've no energy or motivation for doing anything at the moment. I'm still suffering back pain and can't stand up for more than a couple of hours without stiffening.
Recon - getting my head around it all a bit more and arranging to see a PS in London (friend of a friend) for a second perpective on it all. I'm currently leaning towards getting it done over the winter (early next year mid-feb?) whilst there is not much going on in the garden and can get skiing out of the way - but I'm not going to rush into that decision just yet. I'm also adamant that I'll be at Glastonbury next year (subject to getting tickets in Oct) after having to give them up last year through the chemo, so need to be fit from surgery for that.
Tam flushes are ongoing - moving the time I'm taking the pills from bedtime to teatime (and eventually morning) to see if it helps any, before I get into trying to switch brands. Waiting from a call from the onc next week to find out when I can stop taking the heart tablets now that Herceptin has finished - hopefully only for another couple of weeks, then I can take that one out of the mix too.
Hope all are enjoying the olympics - it is quite draining watching all that energy, stamina and fitness - pfffft again.
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Thanks for the link SCACO, hope you are doing well.
I struggled with the link initially but got there in the end and is a good read for a starting point for me. I've just finished Herceptin and considering a recon is my next phase down this lengthy journey (16 months for me now).
Hope your recovery is going well beaniebaby.
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Bless you Hobo, it's been a rough one for you, sending you big hugs and gentle squeezes.
Have you had the neulasta injections (to stimulate white blood cells), I had this as routine on Day 2 following chemo through 3xFEC and 3xTax and was not neutropenic once, if you've not had it, then your 'trial' may benefit you next time around.
I found the extra steroids were a blessing for me, as had chronic pains from the said neulasta injections (which they wouldn't stop, and I did ask) and helped me to ride out the worst of the first week.
Mouth, yes I suffered with that too, but that was more bearable than the pains and I took nystatin for the sore mouth, which worked for me.
It is difficult when you're in the thick of treatment and wonder how you will get through the next one and the one after that, but you will, it may not be easy, but you will do it. A lot of people find their first TAX the worst, I really do hope you have a better one next time.
It is easy for me to say, having been there, and as you say, is not at the forefront of my mind anymore, but I completely remember how it was and how terrifying it can be at times.
It is natural to feel miserable, I hope it eases for you soon. Take each day as it comes and be kind to yourself.
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Sorry all - managed to eventually catch a sleep fairy in the middle of the night and must've held on too tightly, I've not been up long - hahaha!
Pitch your tent Kate (or pick an empty one), grab a flamethrower (to fend off gremlins), pick up some supplies (biscuits and beer / whatever you need), settle in and hopefully there'll be others to help you along your journey through the woods. The piano in the JM may benefit from a tune-up before we commence frivolity
Yes, the path through the woods is well worn Jane - nice to see you in here again too (I've missed the woods recently).
Going to get PM (Paul Macca) do some weeding around the woods today - hopefully a fitting sentence for a shocking opening ceremony set - almost as bad as PB (Pierce Brosnan for the newbies) in Mamma Mia.
Still glued to the large screen around the lagoon, so going to enjoy some more olympic action whilst sipping on some cider from my hammock - it's quite draining watching all of these athletes with their stamina and fitness - pffftt.
Hi D, stray newts - there should be many running around after the rowing teams disturbed the breeding grounds at Eton Dornay, I'll get my net and bucket too.
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It is extremely encouraging that you've gained some energy back, I hope I find some too (and a bit more motivation) in a couple of months once the Herceptin works its way through, but Tamoxifen has it's own quirks too, so still not sleeping through the night after 18 months now.
It's great that you've got a date and not having to wait for too long and you're ready to take the bull by the horns - I wish you good luck with it all. I'm sure I'll get my head around it all and what it means, i'll possibly be having an LD?? I think (back muscle and implant, not enough stomach material to use), need to read up on it a bit more I guess (once the Olympics have finished - I'm glued to the TV all of the time with it all, haha).
Thanks again, Bev.
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I've moved away from the 'still having Herceptin' and 'manic flushes' benches and thought i'd join you on the 'can't stop watching the olympics on TV all of the time' bench, and I should be jumping up and down on the 'working from home bench' but find the answer to that today is I really CBA!
CM - I've a great crop of mint growing, so I'll make mojito's for your bonfire tonight. I may even wander down the greenhouse and plant up some lettuce and feed my tomatoes this aft...if I can peel myself away from the TV that is - my garden (my sanctuary) has been neglected recently due to work (loosely), being too tired (predominantly) and olympics have eaten up all of my garden time and energy.
Laters all, Bev.
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Well, we've all spent a few months getting lost in the woods, not sure if there are other woodies out there wandering around - I'll llight some flares............
Have eventually come down from Herceptin Hill this week (drinks are on me so I'm off to the JM for some bubbles) and spending the afternoon by the lagoon in a hammock, watching the big screen olympics. I'll round up spare newts on my way for those in need of a few extra and I've got some of that olympic flame so will be lighting a few flares around camp to light the way for others who may seem lost out there. I'll drop off some extra provisions from Tam Towers, a few flamethrowers to ward off those nasty gremlins, and harmonious music will play by the camp fire tonght to entice the sleep fairies out for those in need.
I've moved into my new penthouse in Tamoxifen Towers, need to find the maintenance man - he needs to turn the radiators down pffft, and I may even have a plunge pool installed in my vast bedroom suite.
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