Hi Sarah and Carole, nice to hear from you both, I am 5 weeks post op today, I am much more mobile now, the physio has helped a lot. I am pleased to hear Sarah you had good results from path report.
Carole, sorry you have to have chemo, it's not pleasant but it is really the best way to get any stray cells that may have escaped.Clear lymph nodes ! brilliant.
Hope all the other Mx ladies are healing well and keeping up with the exercises .
Sorry have'nt been on for a while, still recovering from the mx, the report from what was taken away has come back very positive, 1 out of 13 lymph nodes taken was affected, also the lump that started out as 6cm large lump had reduced to 2mil so all very good results, still trying to do exercises but still not able to lift my arm above my head, something I have to be able to do by the 24th of this month cause thats when they want to start 3 weeks of rads and I have to be able to lift my arm above my head, so still trying with that, swelling has gone down and the bruising is going down but its taken a good 3 weeks.
Going to the 'look good feel good' workshop at the macmillan centre today, looking forward to a bit of pampering.
Hope everyone is recovering well from their ops and moving forward.
Love and light
Well surgery was 16th Sept. and results received today.Lymph nodes clear and all lobular tumour removed but because tumour was bigger than expected (5cms instead of 1cm)chemotherapy and radiotherapy reccommended in case there are any odd cells left in.As I had a right sided mastectomy with tissue expander,I'd hoped I'd avoid radiotherapy because of how it can damage the expander.Fortunately the surgeon says that the r/therapy will be after chemotherapy and after expander is replaced by implant.I didn't expect my breast tissue to be expanded sufficiently in such a short time(six months or so)or maybe the surgeon is prepared to delay the r/therapy until after the expander has done it's job.Either way, mixed news today.Can at least,consider saving some money on hair preparations and styling until it grows again and I'll look for some headgear for the winter that might actually look OK on me(that'll be a first)
Lizzie ,I bought some bras from the braclinic (online)and they are really comfy and beautifully made.They take the softee really well.I've now got a better shape than I had before the mastectomy ,I was that small but I put a small softee on my good side as well as one on the lost side to even things up and It looks good
Just seen your query. Have you tried Tesco or Sainsbury? Tesco do a fairly comfortable cotton sports bra, which I still wear, following mx when I am feeling a bit uncomfortable. Pre-op I was 32D, but found for comfort it was better after the op with 34C, which fits well at the moment and not tight so you might be fine with 32 or 34 in the sports range.Worth a try.
Hi September ladies, hope you are all recovering well. I went to M & S to get a post surgery bra yesterday but they didn't have any in a 32A. ASDA have sold out in my size. Is anyone else on the small side and having trouble finding a bra? Can anyone recommend anywhere?
Jean, thank you. I feel slightly surreal at the moment as if it is happening to someone else and at the last minute they will turn round and say, sorry Jo it's all been a big mistake and you don't have cancer after all.
Sadly that's not going to happen, I think now I will only get my head around it once the surgery has taken place and I can grieve for what once was., then move on and accept what is now.
Huge hugs for all recovering from, waiting for or undergoing surgery today.
Big hugs for Rach and for everyone waiting for surgery and recovering from surgery.
"yes I did keep my pants on during surgery, probably good idea to empty the bowls and bladder before going in"
Unfort, with Crohn's, the bowels are totally uncontrollable. And unpredictable.
Thankfully, for the first time this week, mine have now stopped haemorrhaging and I no longer have severe shooting pains every time I sit down...what a great start to my hospital week!
Just have to second what SarahLousie has said, the waiting is harder than the operation, honest it's not as bad as your expecting , I also felt I had to grieve my loss and yes I cried a lot in the first week or so but now I am getting on with things, The exercises are getting easier but I still can't lift my arm high yet,but I will get there !!
Ninja,good luck for Friday, enjoy your day tomorrow make the most of the good weather, I am thinking of you.
JoC, come on girl we have been with each other for most of our treatment, you will be ok , I know your really nervous but its the next step to recovery, I am sending you a 'Icandothis' fairy .
Josie1, a big hug for you and a hand to hold when things feel sad.
Harp1970, please don't be scared for tomorrow, it really is n't too bad, sending you a 'sleepfairy' for tonight.
Hope every one is enjoying this much needed sunshine.
harp1970, josie1, Jo C, Ninja - Good luck to all of you for your surgeries, it's never as bad as you imagine it, it will be all over before you know it. Take comfort that their are ladies on here who have gone through what your going through and of course we are all here for you when you need us.
Josie1- I was the same crying all the time when I first came home I think we have to not be so hard on ourselves, what we are going through is not normal and is hard to come to terms with, we are loosing a body part and we have to grieve for it and thats what I think was going on with me and possibly whats happening with you josie1, hang in there, things will improve, sending you lots of love healing vibes and hugs.
Jean - How did the physio go? I am still struggling with the exercises, using my arm all the time but my chest is still so tight, seeing the BCN next week so will discuss this problem with her. Its been a beautiful day down here in devon sun shining just so beautiful, and so grateful to be home and enjoying it.
Ninja - Yes I did mean HB, but think my bloods are nearly recovered now, been feeding myself up and feel a lot stronger for it, thank god for nettle soup and beetroot juice, as I am pretty sure these two are the things that have improved my bloods.
And yes I did keep my pants on during surgery, probably good idea to empty the bowls and bladder before going in tho.
Going to treat myself to some semi-permanent eyelashes tomorrow so looking forward to some pampering, it cost 40 quid for both eyes and then every 4-5 weeks 20 quid to top them up, I still have some eyelashes but they were always very pale even before all of this. Hopefully this will make me feel better about myself whilst I am waiting for my hair to grow back.
Lots of love and light to all
Hi all feel the same as you ,had staples out and bandges off yesterday and woke up in alot off pain today so had to phone doctor who has given me pain killers as feeling a burning feeling and not sleeping so good and have been having a realy sad day and cant stop crying just feel so useless xx josie
Glad to hear you are feeling more comfortable Jean and I really hope the physio helps.
I am now just days away and a complete mess!
Sarah, I know just what you mean about feeling tight round the chest and it not feeling like its part of you, I am 3 weeks post op now and am finally starting to feel more comfortable, I have a seroma where the drains were and under my arm is tight so restricting movement, I hope the physio helps with this tomorrow,but I am managing to do more as long as I don't lift anything heavy. The sunshine helps too !!!
SL:"my bloods went down to 8.3 if they go below 8 they give you a blood transfusion"
Do you mean the Hb?
Mine was 12.3 last week - best it's been since I started chemo, barring the 12.8 count I had after my blood transfusion.
Gooseberry, if you're anaemic, you're bound to be tired.
Hugs to all.
Gooseberrygirl - I too was loosing a lot of blood my bloods went down to 8.3 if they go below 8 they give you a blood transfusion, so I got my partner to bring me in some nettle soup and beetroot juice in an attempt to improve my blood work (crazy as it is hospital food is no good for building you up) by the next time they tested me I was 8.7 and climbing so this was good news and on the strength of that they discharged me but I had spent 8 days in hospital because of it.
Have now got a massive swelling and bruising to the op site this has only come up since the nurse took the c-view dressing off, my chest is really tight, I have a gone to the hospital about it but they say it should settle down in the next 2 weeks but its so hard it doesnt feel like part of my body. Has anybody else got this?
Love and light to all
Hi there everyone,Ninja kept my own knickers on for the op and were still there when I woke up so wouldnt worry,
It is a week today since op, district nurse came says wound is good, pulled stich out with drain attached, that bled a bit during the night, still draining 200 mls fluid in 24 hours, all I read says drain out in 8 days and down to less than 30 mls, is this "normal" had full clearance.
See hospital for results of surgery on Friday, feel very tired.
@Rach:"I have a furry Baloo (Jungle book) hat from Disneyland. Could wear that and sing bear necessities"
With no knickers, you'll be singing BARE necessities!
@Sandy:"I don't want to come round and be wheeled back to him without my hat. I would like to keep some dignity"
So tell them. Even if they want only sterile things on your body in theatre, they can make sure that it's on your head in Recovery, before you go back
Me too! Only prob is at the mo I have conjunctivitis and can't wear eye makeup, and suddenly everyone's asking how I am. I actually feel fine-I just look pale cos no make up, and I look as if I've been crying. I hate sympathy so am trying to go out incognito! We could always wear a balaclava i suppose!
Am envious that you will have someone waiting for you, as my Mum can't drive so can't be there with me.
Rachel - I hadn't thought about that. Do you think we will be able to keep hats/scarves on? I don't wear one in bed with my OH - but always until the light is switched off and before I get up in the morning. I don't want to come round and be wheeled back to him without my hat. I would like to keep some dignity... I look awful enough without any make up on. I know that sounds really vain - and the thing is, I never was vain, didn't really wear make up etc. But the only way I can cope with how I look now is by painting on my eyebrows and eyelashes etc.
O knickers ! Hadn't given them a thought but for WLE I kept my own on and went to theatre on the bed which i hated. It's my hat i want to keep on too. Hope I don't wet myself in theatre!! Ninja, I'm glad you're feeling better about things. I'm okay too but have the odd wobble now and again-going to keep busy for the next couple of days to try and keep my mind off it.
Hi Ninja, I walked to theatre, it was only a short walk and much better than being wheeled on a trolley, I was told to keep my briefs on, however when I asked to use the commode several hours later I realised I had non on, I found them when I got home in my bag , washed through but wet, I don't know why but assume I must have wet myself under anesthetic, so embarrassing !!
I had to walk to theatre (it was on the same floor as the surgical ward) but that was with a nice hotty theatre assistant and they did let me keep my knickers on (my own not the paper variety). The nurses were lovely.
I hope so!
I always have to walk to theatre in my hospital, it's just across the first floor from Stalagluft 2 and a short walk.
It's so much nicer than being flat on my back on a trolley going in and out of lifts and long corridors filled with staring grockles in the big teaching hospitals in town. You DO get a ride back on a trolley from Recovery, though!
I haven't had to walk to theatre - nor have I not had pants (but only of the paper variety). Am SURE they'll make allowances, wont they?!
If I can have the paper pants and a panty liner and a tissue, then that'll be better. But with Crohn's, walking pant-less to the theatre is NOT on. I have probs with PR bleeding. It's like having a permanent period and the last thing I need is to have an awful and uncomfortable embarrassment.
I was able to keep my own knicks on for the port insertion, but even then, the very short walk from Stalagluft 2 to theatre meant that I had to go to the bog outside theatre to sort myself out. It's HORRIBLE having this disgusting Crohn's thing. I hate it.
I'm getting more "accepting" of the awful operation as each day passes. Isn't that sad?
Question for those ladies who have had their Mx already - are you allowed to wear your knicks for the op or just the theatre gown?
Ninja-I've been thinking about that too. Mum staying whilst I'm in hosp to look after girls but not after that so don't know how I'll get on with both sides sore. I'm a terrible sleeper too and can only sleep on my side normally. Hoping the anaesthetic won't wear off too soon so i can drift off. Have lots of soft pillows to shove under various parts of me. My friends are being great though and have offers of help once I'm home, and girls can do shopping etc. Thank goodness for M and S food shop down the road!!!
Don't know about you but I'll be glad when it's all over!
Love Rach x
That sounds great, Carole. My PortaCath is in my naughty boob so that will come out on Friday and the Port Man is away so Port won't get fitted to good side until day 10.
OH realised this morning that I'll have my right hand/arm on rest after the Mx then the left arm on rest for at least 2 days following the new Port implant. I'll be struggling to lift the kettle - it's a problem now anyway with this autumn weather coming in, due to my FMS, and I'm currently needing both hands to lift the kettle.
OH cannot have unlimited time off - BCN suggested rest of week off when I get home (so a week on Weds, Thurs, Fri) but then he'll need to be off the following Monday to take me in for Port operation and I guess the following day, too. I was very bruised and sore the last time.
Sleeping will be fun, I cannot sleep on the clearance side. I cannot sleep on the new port side. I cannot sleep on my back due to spinal arthritis meaning that my spine must be very straight or it really starts to hurt - one's head tends to loll to one side when asleep.
thats good to hear Carole, I am feeling great , still a little sore but starting to get back to my normal self, it's not been as bad as I was expecting, I have nothing but praise for the Hospital team who are looking after me, I think that's been a big help in my recovery.
I'm one week on from surgery and feel great,all things considered.My wound has sealed and looks OK ,still lots of bruising but all dressings off and drain came out last tuesday(surgery friday)
Most of my pain was like a cramp in my forearm and back of hand and where the lymph nodes where removed under my arm but thats died down now.
I had a tissue expander put in at the time of surgery and the port which will take the saline in under the skin in my lower arm pit.It's not on the outside of my skin and they'll fill through a needle through the skin so although there's a lump there ,there's no opening so I guess less likely hood of infection.lost breast area still numb but thats to be expected.Lots of loose shirts disguise the flatness.
Sarah that's brilliant news, you sound like your in a similar place to me, I am having Rads, having a meeting with my Onc next week to discuss it.So pleased for you hun.
Hi Jean and Ninja, ladies,
So went to the hospital for a routine onocology appt. waited for what seemed like an age for the doctor eventually she turned up and explained that she had been over to my BS office and picked up the pathology report so she could relay the results, I was not expecting this yesterday, thankfully I had taken my OH with me as he's always better at taking important information in. The report said that I had responded to the chemo treamtemnts so well the mother tumour in breast was only 2mil (originally 6cm), they took 13 nodes out of which no 13 had cancer in the others were clear, all in all they are very pleased with the response I have had, I'm so pleased, initially they were not going to offer me radiotherapy but now they are I have until monday to make my mind up about whether or not I am going to have the rads, need the weekend to think on it. To keep the mets on the lungs at bay I will continue with herceptin for as long as possible and tamoxifen for 5 years.
They did'nt even want to test my blood, which is fine by me enough with the needles eh ladies!!! I am not looking so pale and think that liver and onions worked wonders, going to continue with it once a week for a while. Thanks for the suggestions on how to create better bloods.
Jean - My lymph area is uncomfortable too, I have only been doing the basic exercises should really start on the intermediate ones now, but just have not been feeling up to it what with the low bloods making me feel washed out and tired all the time. I spoke with my BCN and she said only do what you can dont push yourself too much be kind to yourself, if it hurts try taking pain killers before you attempt these exercises. I have been quite active and using my right arm as much as possible I am right handed anyway.
Love and light to all
Hi Sarah L , I went to physio yesterday, I have some cording, under my arm and down inside of my arm, she managed to relieve some of the pain in my arm but the lymph area is still uncomfortable, I think I am expecting too much from myself as I still can't do the hand on wall exercise very well but she said it's early days and just to do what I can.
I had problems with my blood throughout chemo, I am still tired a lot of the time, I try to eat lots of steamed green veg and red meat, I never liked Liver so that's a no no for me.It all takes time to recover but it sounds like we are all doing well so far, I was given Femara yesterday to hopefully keep the Lung met stable, I am slso having Herceptin every 3 weeks, have you any further treatment other than Radiotherapy?
Sarah L, sorry to hear that you're having probs. Dark green veg and a lot of nuts also supply iron, you don't need to suffer liver if you don't like it.
Lizzy1977, Gooseberrygirl, Jean and all who have had recent surgery we are all doing very very well, sounds like we are healing well.
Ninja - They will give you a softee, I personally did not wear mine just wore cardigans or button up through the front clothes helps when putting and taking clothes off if you have easy access for a while. My boobs were tiny size and the swelling on the right hand side actually balances me out a bit. As for the staring I never noticed any but then like I said I had very small boobs and still wear headscarves cause my hair is still growing back people look more at my head than my boobs. In fact that could be a tactic make them stare at something else distract from the chest area. Hope this helps.
Had my c-view dressing removed yesterday and the scar is so good and healing really well, its the Lymph node area that is causing me the discomfort, still trying with the exercises. Trying to get my bloods up thats why they would not let me leave and kept me in for 8 days cause my blood count was low due to chemo and the surgery, one of the drains just would not stop and is still loosing blood now, hence going back to the hospital today, last night I had a diner of liver and onions something I have not had since I was a child but apparently it is the best for getting iron into your system. Fingers crossed that it worked and my bloods are improved.
Love light and healing to all
Glad your op went well Goosberry girl. I was allowed to go home today. Aren't those drains a pain.
Ninja, I hope your op goes well. As Tillybob said I was told to take in a bra so the could fit me with my fake softie boob. I'm only a 32A so with the bra and my clothes on you can't really tell although it does sit a bit higher as it's not got any weight in it.
I feel surprisingly ok, not too sore really. Think the WLE hurt more but they checked my lymphs last time whereas this was just a simple mx. Get my results on 6 Oct and see the oncologist on 7 Oct.
Big gentle hugs to you all and wishing you a speedy recovery
gooseberry girl,good to hear your back, hope alls well and your comfortable,it's a shock the first time you see what's been done but it's amazing how quick you get used to it,Keep resting and recovering.
Ninja, I was told to take a good fitting bra into hospital so they could fit me with a 'softie' prosthesis, I also bought a camisole top with hidden support from M & S and I can wear the softie in that too, I have been able to wear it from day one,in fairness no one has been able to see the difference. However, I am a 44D ,the softie is similar in size but not weight so it is a little higher on that side but it's only temporary so I can live with it for now. It is quite comforting to have it , like its a protective padding over the wound .
Hi There girls, back home yesterday, was not as bad as expected, drain a pain, looked down yesterday Ninja and after having a pair of 34E breasts, now see only one and the other side looks like a boy with all ribs showing, some swelling today so growing new cleavage already..still the alternative I feel was worse.Thanks for all your good wishes and giving me a view of what to expect. Go back next Friday to find out the next bit. Thank you ladies for your support, How are you doing Josie? Big Hug xxxx
Best wishes to those recovering and those still bliddy waiting!!
BIG question for those who have had an Mx already.
I'm just looking now at my chest and I see two firm boobies and a LOT of cleavage.
Miss Left will, I suppose, move a bit to the right instead of resting tightly against Miss Right. But I'll have a big nothing where Miss Right was. Apart from sitting with a pillow in front of me all the time, how do I stop visitors from starting at the VERY obvious lop-sidedness?
It's REALLY gonna show. How soon will I be able to bear to wear a soft top that would hold the softie that I presume the hospital will provide?
Lizzy, you're right the waiting is the worst part. I had to wait 9 weeks from surgery until start of chemo, and all that time i imagined little cancer cells invading my body. It was terrible! Waiting now for this op is hard but not as hard as that cos i can see the end now! Hope you continue to make a rapid recovery.
Jean, hope you're going along okay and the soreness wears off soon x