Hey guys, hope everyone is well. I managed the wedding in Saturday but it was a whole day affair; mass then reception, left my house at 1.30pm and didn’t get home till after midnight so yesterday and today have been spent on the sofa feeling very sore and sorry for myself. It was great tho and I’m so glad I got to go, everyone looked out for me and I even managed a wee dance 
I wasn’t being daft tho, if I’d felt sore I would of gone home but with plenty of strong painkillers I managed. Even spoke to my friends boyfriend who had testicular cancer last year, he’s the same age as me. He had surgery and chemo so we were swapping chemo horror stories! I’m pretty sore aches and pains wise, esp my back, teeth and rib cage unfortunately, plus I got my first period on Saturday for the first time in 10 weeks so I think the cramp isn’t helping! Hair is def coming through, all my eyelashes are gone but it looks like some are starting back on the top. Eyebrows are holding on, leg hair is coming back but no where else. My nails feel weird, really sensitive, toenails too (apparently they will probably see me through but then 3 months later they can fall off! But by that point new ones have already started to grow underneath so it’s not as bad) and my hands are starting to be red and peeling again but they gave me great cream for that tastebuds are well and truely gone, they were weird from pretty much the afternoon i had chemo but todays its back to the burnt mouth taste, yuck.
have genetics first thing tomorrow morning, trying not to get too stressed about it coz I either have the gene or I don’t, and it was decided 27 years ago so there’s nothing I can do about it. I’m having a MRI next Wednesday at my local hospital which is good then back to see my onc consultant 1 last time in a few weeks, check my toxicity or something?! Can’t believe this part is done, I was counting the days and now it’s strange. I’m not complaining, it’s just a strange limbo time. Need to get a new wig coz mine is looking pretty scabby so going to try and get one this week, cheer myself up, maybe set a radical one this time
how you feeling jellytot? Hopefully well i was told 4 weeks recovery time when i saw plastics last week; 5 days in hospital then time at home. i checked as i live alone and will need to go stay with someone, apparently ill be fairly mobile and independant quite quickly, drive when you feel ready and safe too but but probably 3 weeks. Then after radiotherapy allow 6 week recovery time, apparently it all hits you at the end tiredness wise. Sian, sounds like you’ve had a really tough time of it, get some eyedrops, I had to get some a few weeks ago coz I had similar symptoms- sore when I blinked, red, nothing massively different to see. Good luck on Wednesday Claire, it’s a nice feeling
Laura i’m so glad u went to the wedding and enjoyed yourself. We all need little occasions like that to help perk our spirits up. I feel loads better emotionally this week after popping in work last week even though i burst into tears as soon as i walked in the door. At the weekend i went to a friends for a drink with 3 other girls and it was so nice to be in a social situation and talking about something other than my bloomin cancer! I’ve been to the doctors this afternoon and it turns out i have a small stye and conjunctivitus. The doc said the infection has got into the hair follicle where my lashes should be, (the perks of not having any hey) and that by rubbing my eye i have helped spread it. I have antibiotic eye drops and cream for now but she said if it gets more red i will need to go back and get oral antibiotics. Hope not because i guess that could delay my last chemo next week. Are u having immediate reconstruction with your surgery? I only ask as i was told it was overnight stay yet u mentioned staying in for 5 days? i cant have immediate reconstruction as i’m having radiotherapy as things stand.
Sian x
I’m having a skin sparing mastectomy with temporary implant and i think full node clearance hence the 5 day stay I think, ill have like 3 drains in and I’ve never been in hospital before so I think they said 5 days max to be safe, better that than saying 1 and then once I was making me stay longer no immediate recon coz of rads too and my weight still isn’t great tho I am trying.
Hi ladies
Laurable, great you managed to stay the course at the wedding.
Had a nightmare day at hospital . Was only supposedly there to have bloods done and see onc.
Got there at 9.30, bloods done immediately, saw onc within 10 min. Soopa. Onc thought my heart rate was a bit fast so sent me for an ECG and a chest X-ray (looking for possible clot on lungs cos I get a bit breathless after any exertion). Both were clear but still heart rate was a bit high. Had to go for a scan, including dye, and surprise the fluid leaked into the tissue (extravasation) wonderful. Then after lunch had to go for a US on heart. Waited for hours for the result of the scan and it was clear, so last chemo can go ahead tomorrow. Got home exhausted at 5.30. Only good thing was I treated myself to a decent lunch, had to gobble it down quite quickly as I only had 45 min before I had to be back at hospital.
Have the frozen peas on my arm to keep swelling down and the bruising is now turning a livid purple – this is the arm they’re going to use tomorrow!
Only have rads left to go (already had mx), and onc said this would start 2/3 weeks after last chemo and she will arrange for me to see the rads department sometime soon. She also mentioned Arimidex as therapy after rads, last time onc (a different one) spoke about therapy he mentioned tamoxifen - I’ll wait and see if they change their mind before I finish rads.
Going to bed soon - had enough.
Take care ladies
Maggie
Hi,
I’m just chiming in quickly as I had my post chemo mastectomy almost 4 weeks ago and just wanted to post in reply to some of the questions.
compared to chemo, the mastectomy part has been pretty straightforward. arrived at tge hospital early in the morning. as i have a latex allergy, they put me first on the theatre list. i had a dose of morphine as soon as i woke up. I could feel *something* before i;d even opened my eyes so i asked for it straightaway. they gave me tramadol later in the afternoon and by bedtime, i refused pain-releif because i felt fine.
i needed help to go to the bathroon becuase they drugs made me very unsteady, i preferred the assistance to a commode though. (they just helped me there and back, they didn’t come in with me!)
the surgeon discharged me the next day but left the drain in for 5 days. they gave me some paracetamol and ibuprofen to take with me.
i had a follow-up appt two weeks later where they booked me in to have more fluid drained as it was quick swollen and tight, but all in all it’s been ok.
Hello Ladies,
Well done Laurable and Jelly on reaching the finishing line! I was supposed to have my 5th chemo (2nd T) last friday but after seeing the Onc she said because my body was still suffering from the first T (I still have the trots and doesnt seem to be getting any better) she has delayed my chemo by one week so I have my 5th one this Friday now. I just want it all to end girls i really feel like im not really doing anything inbetween each chemo session i just wait for the next one by counting down the days, at least i know it will be finished by christmas. I havent asked when the Rads are supposed to start yet all one step at a time. I see that nobodies Side effects got any worse with the 5th and 6th chemo it all pretty much stayed the same, Im hoping my blood counts stay normal this time round. I think i will be having injections for 5 days as opposed to just 2 which they gave to me after the FEC. I so desperately want my hair to grow back Im getting fedup of my wig and hat now i look like im trying to disguise my self every time i go out, wish i was the type of person that could just go outside with just headscarf of nothing at all but im not, so many girls at the hospital come in with nothing at all on their heads and i think they are amazing, but i look at myself in the mirror and just think i look ill its like it reminds me of what i have where as with a wig i dont have to notice my drastic physical change. Not having eyebrows doesnt help, omg why does it have to take the eyebrows away as well have we not suffered enough these last few months. Girls for those of you worrying about operation I can honestly tell you it is nothing compared to chemo, you have proved your inner strength by getting through chemo, the op is a piece of P*** basically. I had mastec without recon and i actually dealt with having no breasts better than having no hair, dont get me wrong i am still angry at what this cancer has done to me and my body but i think you can just hide the breast part cant you but you cant hide the no hair and no eyebrows, or lashes etc. i was in the hospital for two days, worst part for me was the drains as carrying them around to go toilet and have a wash was really annoying but they were removed by the third day and then i was home basically i didnt drive for about 3 weeks and you cant do heavy lifting for 6 weeks so for those of you working def get docs note for 6 weeks minimum its the only way your fully recover if having mastectomy well i had double so i was really worried about wound opening or something.
got go pick up my little one at nursery but if anyone has any questions re op pleasse feel free to ask me anything if it helps
xxxxx
Hi Ladies
EverythingisRosie: Glad to see you’re up and about again. Real pain when they delay your chemo, just want to get to the finish line, know how you feel about that. And I agree with you about the mastectomy, piece of cake compared to chemo, although I only (ONLY!!) had single.
I’m completely naffed off today. Went for my final chemo today and they wouldn’t do it - chemo nurse obviously didn’t want to do it because of the extravasted vein from yesterday, said it was still swollen and she didn’t like the look of it, asked if I had taken all my steroids and like an idiiot I told her that I had only taken one dose yesterday because I was that long at the hospital and if they think I was taking 4 steroids at midnight they must live in another world. That was it, they decided they weren’t doing it and sent me home, come back tomorrow, Another wasted day, And the onc has referred me to cardiology because of my fast pulse rate, she checked it today and it was fine - keep telling her that it probably only goes up when I set foot in the Oncology Clinic, but don’t think she believed me and was not amused, no sense of humour!
Try again tomorrow, get the ice pack on my swollen arm - actually doesn’t look that swollen to me and it’s not sore. I think the nurse was only worried because they will have to hunt for a usable vein and if the extravasated one hasn’t healed properly yet it might leak into the tissue (I think that’s why by my totally unqualified guesswork).
Have a good day all and keep well
Maggie
Hi Ladies,
Hope you’re all doing ok? I have good tip, audiobooks! Just thought of the idea. When you’re too tired to concentrate on tv or reading, audiobooks are brill. Wish I’d thought of it earlier!
I’ve been so tired on this one, I am massively in awe of how those of you with children have coped!
Sian - how’s your eye? My toenails seem okay so far. My fingers still feel weird and studying my nails I’m convinced they all have bumps in the middle but I don’t know if those bumps have always been there if that makes sense! Overanalysing everything! I’ve had trouble getting pills out of packets and getting my contact lenses out of their packets each morning is really hard work! Is the 4 week recovery period you heard about for mx or lumpectomy or both? xxx
Claire - good luck for your final chemo xxx
Laura - I’m so glad you went to your wedding, well done you! You may have been tired afterwards but what an achievement! I. Bet the bride & groom were so delighted you made the effort My head hair is defo coming back too, it’s very very fine, almost white and very wispy but it’s defo there, I’d say it’s almost 1cm long You can only see it in the light too as it’s so pale but it’s there & I can feel it! I have virtually no eyebrows & I think that’s what shocks me the most about my appearance at the moment, as soon as I draw some on my face again it makes such a difference. I think my eyelashes are coming back too, there are some v stumpy lashes on my lids, not sure if they are small ones that were always there or if they’re new, ut who cares, they’re there! My tastebuds are also gone, I can just about taste pineapple juice Good luck with your MRI today (if you meant today, not sure if today or next Weds!), I had one right at the start of all this. They’re noisy & a bit claustrophobic but definitely bearable xxx
Gadget - thanks for the advice, do you know anything about lymphodema & if so can you expain it a bit to me? xx
Maggie - They never took my heartrate before chemo but I bet if they did mine would have been sky high as I got panicked every time. For my last 2 I even got given Lorazepam to take 1/2 hour beforehand to calm me down. I’m like you with my hiding veins & bruising. I bruise like an absolute peach, the bruise I have from my last chemo is evil. It’s purple & almost pulsating with pain! i’ve been told I’ll be having tamoxifen & from what I’ve read I think tamox is for pre-menopausal hormone positive patients & Arimidex for post-menopausal - not sure how accurate this is though. Sorry they wouldn’t do your final chemo yesterday, especially after you’d geared yourself up for it, good luck for today xxx
Rosie - What a pain bout your last chemo, but if your body was suffering then better let it fully recover, otherwise the SEs could have been even worse. I’m coming into my low blood cell days so crossing everything I avoid hospital again. It seems those of us who went other (other than MLesley who hasn’t been on here in a while) only went in on the first T, so maybe our bodies just couldn’t cope with the switch from FEC to T or maybe we still had some FEC in our bodies so we had a double whammy of drugs. Who knows? Anyway I’m having homemade fruit smoothies every day and Life Mel honey which is supposed to boost white blood cells so let’s hope any nasties stay away. I feel exactly the sme as you about my hair, especially as I’m getting married in April, but as I said to Laura above, mine is coming back already so I think yours will come back soon too xxx
Couple of questions about surgery if i may: Did you have any lymph nodes removed before your mx? Were you told anything about lymphoedma? Might be a silly question, but what are ‘drains’?
Lots of love to everyone, especially those who haven’t posted in a while.
Jelly xxx
Hi all. my eye is much better now thanks. The swelling and redness has gone so i look much better. My hair is coming back too and is fairly dark thank god. Its about the same length as yours and feels fluffy. I can actually feel it blowing in the wind if i’m outside which is a weird feeling when you’re used to having none. I am finding that i need to wear a scarf more often as the weather gets colder.
As for Lymphodema i attended a talk about it when i went to the forum in Liverpool. Its a condition that can occur after surgery or trauma to your arm and lymph nodes. If there is damage or infection to the lymph nodes the fluid cannot drain away properly and as a result your arm can swell up quite dramatically. To help prevent this condition you shouldnt have injections in the side you were operated on, do not have blood taken or blood pressure done on that side, try not to get sunburnt or insect bites, limit the weight you carry especially when it comes to shopping or carrying heavy loads, when gardening wear gloves to avoid getting pricked by thorns or getting dirt into any small cuts in the skin etc. I believe if you develop Lymphodema its a life long condition that you will have to learn to live with, it cannot be cured. The lady who did the talk about exercise at the forum said you should be carefull about the types of exercise you do too. Things like press ups or the plank where a lot of pressure is placed on your arms and upper body strength should be avoided especially if your are holding the position so long that you start getting shaky. When walking try to swing your arms a little or open and close your fist regularly to keep the fluid moving. I have found more info here for you. breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/lymphoedema
When i was 1st diagnosed they talked about lumpectomy but did say i may need Mastectomy so when the consultant talked about recovery times i assumed she meant for that (Mastectomy). They havent really said much more about the actual surgery or timings other than that if the scans i’m having next week show the tumour was attached to my skin then i will need the skin removing and therefore a definate mastectomy. I plan on asking a few questions next week when i see my Oncologist. I’ve seen a lady with a drain in and was rather suprised how big hers was. I believe its a tube coming out from the wound or area of surgery attached to a bottle or bag and are used to drain away the lymph fluid after surgery and are kept in for anything up to a week but any info from you girls who have had surgery would be helpful.
I’m off out for lunch with some friends now. Good wishes and healing thoughts to you all.
Sian x
Afternoon girls,
Final one done, yippee , I do feel like a pile of poo, but yippee! Have cried 3 times this morning already!
I can’t say enough how much I have found posting on here a big help through the tough times !
Jelly I have discovered audio books too, tho get them from the library as they are super expensive! Tried the browstuff, it’s really good, thanks for the tip.
EverythingiRosie sorry to hear about your delays, I know it’s for the best, but you must feel frustrated.
Madjock hope you get your chemo done today!
Sian hope gunky eye gone soon
I presume the hair regrowth is not proper hair? It is v soft and downy and white? If it is, might be interesting! Especially as I have dark brown hair usually!
Sending hugs to you all. Claire Xox
Claire - Congrats honey!! It’s a very weird overwhelming feeling knowing this part of the journey is done huh? Glad the eyebrow make-up is working for you. I’m downloading audiobooks onto my iPad, have found a good forum which gives you free ones My hair is very downy and white, like a newborn baby’s hair is the best way I can describe it. My hair before was thick, curly and brown so yes is v weird! Quick have something nice to eat for lunch before your tastebuds go xxx
Sian - thanks for the info, enjoy your lunch
xxx
Hi,
Sian covered lymphoedena advice in her post. I’ve pretty much received the same advice about protecting the arm from injury or infection. The only thing I will add about exercise is they you can do weight bearing excercise (new research encourages it) but you have to build your strength gradually. I think the plank it a tricky one - I guess if you do it in the right way, the strain is in your core muscles, but it’s very easy to take your upper body weight in your arms and shoulders, which is where the problem would be
I talked to my BCN about this, because I was worried about future limitations. I used to weightlift with the aim of body-building and i like my workouts to be short and heavy. The general advice seems to be that you should be able to carry on with however much you could previously manage without strain. ( I hope I’ve phrased that properly)
I even asked about saunas etc. And the advice was basically don’t spend too long in the sauna. I think I’ll limit myself to 5 minutes after a workout and no going back in after a cold shower.
the other thing my BCN pointed out was non-activity or repetitive strain was even riskier than overdoing the excercise. So if you do a desk job and are constantly typing or mouse clicking with the surgery arm, you need to stop every 20 minutes or so.
Gadgetgal Thanks for that info. I havent heard any advice on Saunas at all but i do remember them saying we shouldnt ever have a deep tissue massage now. Do u know about that or can you add anymore to the sauna info? It’s interesting but also scary to hear all the things we should and shouldnt do.
Jelly the lunch was nice and it was great to catch up with some friends i havent seen in a while.
Claire congrats on making it through the last chemo. I’m sorry you feel rubbish so quickly, were they tears of relief maybe?
Maggie i hope the swelling went down in your arm and you were able to have your treatment. Strange that they wouldnt give it to you because you forgot your steroids. I forgot to take my 2nd lot on the day before my 1st Tax so they just gave me extra steroids via i.v instead.
Rosie its a shame your treatment was delayed too but at least they are allowing you time to recover properly before they poison you again. Hopefully you will have at least a couple of days where you feel better before having number 5. I guess you are further behind than the rest of us now but we are all routing for you and willing you to see it through like us.
Laura any news on an op date for you yet? 3 drains sounds like a lot, are u having a double mastectomy?
A little wave to anyone else who is reading this that hasnt posted for a while or anybody i’ve missed out.
Sian x
Sounds like you are well planned then Laura. Sorry if i sound like i’m giving you the 3rd degree, i find it interesting how our treatment differs so much and how the hospitals manage things for us. In my mind i know i want a DIEP flap reconstruction when the time comes but as for the initial op i think i do want the mastectomy even if the lumpectomy is possibble now. I’m pretty sure thats what the surgeon is going to say anyway as the Onc said last time that if the scan shows its in my skin then i will have mastectomy. I’m pretty certain that i have the orange peel skin on the affected side so i guess it must be in the skin. Thankyou for the info on the drains. Thats 1 of the parts of surgery that concerns me but it doesnt sound so bad the way you have explained it. I’ve coped with everything else so i’m sure i can cope with this.
Hey ladies, well done on those finishing chemo and sorry to those who’ve had delays, it must be hard when you’ve got yourself all psyched up for for then to have to wait. I’m a bit of a control freak so I wouldn’t of taken well to that, thankfully I’ve had pretty much everything on time I think thanks to the injections I got. It’s been a week today since last chemo, today is the first day I’d say ive felt better, no painkillers, bit sore and achy but mainly my back and ribs. Went for a walk earlier and did some cleaning and washings in my flat, amazing how little you feel like doing housework when having chemo! Had genetics yesterday, agreed to investigate, seemed like the right thing to do even tho its a scary prospect. MRI is next Wednesday but thanks jellytot, I’m quite claustrophobic so it might be interesting but ive managed everything else up to know so I’m sure I can survive this! Sian, I’m having a skin sparing mastectomy on 1 side and the nodes removed- apparently one drain under my arm and 2 in the implant etc. it apparently is a tube that’s about the size of a pencil, it’s sewen into you with loose stitches, drains out any fluid that might gather under the skin. No date yet!! But maybe after the MRI? I’d like to know to plan, I need to go shopping anyways for underware and pajamas for hospital. Thanks for all the amazing people commenting on surgery, you made me laugh out loud at the descriptons of it! If I have half of your courage and strength then it will be a walk in the park! Quite disappointed ill be missing out on lots of Christmas stuff which I usually love, and I guess everyone will be getting presents I can order online or vouchers.
My hair is very blonde and patchy at the moment, I can’t see much of a difference but I can feel it. Apparently at the back which obviously I can’t see is growing back quite well. Fingers crossed it will having a covering by Christmas coz its cold in scotland!
No worries, happy to pass on my limited information I’m lucky in that my best friend is a doctor, she’s currently training in anaesthesiology so she can give me some info. She was on a breast surgery list the other week and was saying how impressed she was with The surgeries; quick, fairly painless, very little complications, she offered to show me the drains if I wanted but told me not to worry about them. Apparently not sore to take them out just slightly uncomfortable but it comes out very fast. Some people have them in for longer but they monitor them constantly and take them out as soon as they can as they can encourage infection but too early and fluid gathers. Mine isn’t attached to the skin but they are going to take away the couple of inches over it and the nipple coz its beside that. Otherwise I get too keep the other skin. Surgery still scares me but I know I need it, I want this bloody thing out of me (shrinking as it is I can still feel it :() and all the fantastic women who come through this every day well and healthy it’s worth it we’ll all be fine, it’s never as bad as u think its going to be, they give u good painkillers if u need it but my friend said how little the women she saw needed afterwards plus we get to lie on the sofa and get people to run about after us for a few weeks, I’m so getting a bell for my mum 
lots of love xxx
Thanks for that, the info really helps settle my worries and as for the bell i think i’ll join you on that 
Sian xx
Hi Ladies,
I just wanted to share my op experiences as a lot of you still need to go through it. Unfortunately I had to have 2 as the first didn’t work but they really are a walk in the park compared to the chemo. With both ops I was out the next day & yes you will need pain killers but only for a couple of days, the drains arn’t pleasant, the tube isn’t as thick as a pencil but they are stitched in quite a long way so when they are taken out it can be a bit painful & it’s surprising how long they are. The bottle they are attached to are quite big & I kept forgetting I had it & would get up & walk around & then hear a thud lol. The drains are there to collect fluid & blood from the op areas so it depends how much you produce each day as to when they are taken out.
I also had my lymph nodes out so I had to do daily exercises to get back use of my arm, my armpit is still numb four months after my op so when I put deoderant on I have to look in the mirror lol but no pain, as for driving I drive an automatic so it was about 3 weeks until I drove because it affected my left arm using the hand brake. I have been told not to have use saunas, steam rooms & deep tissue massage. If you have your lymph nodes removed you must not have blood taken, blood pressure taken, injections & canulas from that arm.
Hope any of this is useful to some of you, I am looking forward to my last chemo on Nov 5th & moving onto Radiotherapy, then next year my reconstruction.
Healing hugs & love Angela x
Forgive the spelling, stoopid ipad!
Hi Sian,
I found out the sauna information because I was googling for it (for some reason or other)? The concern is the “extreme temperature”. Because some sources say never go into a sauna and some sources say “limit your used” I tried to get clarification from my BCN. She said what comes down to, is risks.
Apparently even the advice about needles isn’t a dead certainty. However, some things are easy to avoid, e.g. needles and blood pressure cuffs, it makes no harm to avoid them anyway.
So, yeah, when I tried to get “brass tacks” on the sauna question, she said a few minutes wouldn’t be harmful. Of course, if ever feel like I’m in the sauna from Hades, I’ll walk straight out
Re: deep tissue massage: ALL the advice I’ve read says you must only ever have a DT massage from someone who has been trained to deal with lymphoedema.
arm use : I had a teeny bit of stiffness around the chest and shoulder, nothing major. it cleared up in a couple of days. Just make sure you do the exercises they give you, otherwise you will have problems. I did mine twice a day after I was discharged. If I left it too late, I noticed a bit of stiffness creeping back.
driving : yesterday was the first time I drove, making it 3 weeks post-surgery. It might have been sooner if I hadn’t got the hypersensitivity. On the other hand, we let the car insurance lapse for a few days anyway! My mx was on the right, and I drive a right hand drive.
Ok, so, I just checked one source, BCC’s leaflet says “it might be helpful to avoid very hot saunas and steam rooms.” and yes, you can have DT massage by a properly trained person, the risk is to *that*arm, not the whole body.
The other thing is to make sure you don’t break the skin on that arm, though dryness, eczema, cuts, burns, sunburn etc. If you do, use antiseptic.