Poor Lolly. It will get better, the time between chemo and rads seems to have been a difficult one for several of us.
Cress, I hope you'll be sporting red hair when we meet up, I'd love to see it, I'd love to be as bold as that but I'm just not as outgoing a person as to be able to carry it off.
Tam isn't too bad so far. I've had very stiff hands in the mornings each day since taking the very first one. I'm not sure if that's an SE or coincidence. The hot flushes seem to have faded and don't seem to be as frequent at the moment.
I've had quite a big day today. Firstly I've been for my rads set up appointment and got my titoos done. Having done it I don't know what I was worried about. Secondly, I've been me rather than the person who pretends to be me. Confused? Yes, that means I've worn no wig and no prosthesis all day so far, it was just me and it felt really good. I also got an extra helping of cheese on my jacket potato lunch out, a large latte instead of the medium one I paid for, you wouldn't believe how many doors got opened for me and how many people caught my eye to smile and say 'hello'. It won't stop me from wearing my prosthesis in future but the wig may be a goner. My hair is only about 1cm long, but it covers most of my head except where my wig pulls it out at the back, that's a good reason not to wear it.
My rads start date is 5th Jun, not long now.
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Lolly, the only time I've been dizzy is when I'm worried; blood tests, cannulas, surgery or when I'm really tired which has been frequent. I started Tam yesterday and had more hot flushes than usual in the night, but it wouldn't seem to be Tam because I've only taken one!!
Lisalou, I'm pleased to hear your son's behaving better and your Mum is stronger. Perhaps you can get some TLC now.
Cress, a London meet up would be fine for me. You're right about my OH; I hadn't realised how hard it was hitting him.
Coyote, I hope your cough is better, fab not to have to go to hospital for it. My nails have stayed put but are a series of brownish and black stripes (6, one for each FEC), but with pink bits at the base now.
Maire, I'm not going to tell my OH about the badger thing, he will use it on me!
Bordercollies, you're right about the embarassment & inhibitions. When the GP nurse removed my mx dressing I said how ugly the scar was. She said 'well who's going to see it, really?'. I said 'it seems like everyone to me'.
On my mx scar there is a point at which I feel it is 'tethered' or 'anchored'. The doctor said not to worry and to do my exercises, but I've been a bit worried because it felt like the wound will burst if I stretched it any more. Then this morning while exercising I felt a kind of rip and suddenly where I could only put my arm 3 quarters of the way up the door, I can now put it above the door, it doesn't hurt at all, it feels good. But, I was under the impression that the idea was to strech the wound for rads and am a bit concerned I've done some damage. Am I just being a wuss again? The BCNs aren't in until Monday. I'm not panicing too much.
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My chemo nurse said not to put a colour on for 6 months, but I think some people put henna or other natural colours on virtually straight away (I'm not recommending that, I have an appointment booked for October). A problem with henna is that it goes orange on grey hair. That's me out then! I'm sure on this website somewhere it says you can colour after a minimum of 3, but preferably after 6 months.
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Hi. I've had my post op appointment today and all has gone well, we're so relieved. I've got my prosthesis now too. Rads next, I've my onc appointment tomorrow. I'm feeling lots better and feel that I've got over another hurdle.
Is The Armoury on the one on the river in Shrewsbury? Sounds fab to me if that's the case.
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Cress, great news! I'm so pleased for you. Thanks again for your advice, it's really good to get info from someone who has been there and done it and someone who's not covering their bum for fear of being sued. Personal experience makes so much difference.
Wendy, I'm so sorry to hear your YDs results. I'm glad she has you and her sister to support her through what's ahead of her though.
Lisalou, I hope your Mum feels better soon so she can look after you in return. I really don't know how you ladies with children cope, I find it difficult just to cope with myself making a fuss.
On the subject of menopause, I'm finding that the docs aren't keen to say anything other than hot flushes and it might be the chemo, but that's about it. My hot flushes seem to have lightened up, I hope that doesn't mean I'll get my periods back because I could do without that minor but nasty little inconvenience at my age.
I had my BS appointment today and they've told me the spread of DCIS hasn't gone to the edges, so that's great news. My OH cried in the car on the way home. I hadn't realised how worried he was. The doc reassured me about my scar and she said it's pretty average for an mx scar and there's nothing they can't put right at a later date even if I don't decide to go for a recon. Relief!! I've got my prosthesis, it's sooooooo much more of a match than my softie and makes me feel more confident.
My onc appointment is tomorrow, Tam is on the cards.
I live in Oswestry on the Welsh border, but my Mum lives in Watford if it makes a location any easier I can stay overnight with her (whether she wants me to or not!). We seem to come from the length and breadth of Britain between us.
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I've sent off for some FAST shampoo too. I read about it ages ago and promptly forgot.
The sun's been fab today, it makes the world seem like a better place.
Wendy and Cress, I hope your news today is good.
Lolly, poo for no same day results, it's horrible when these things get dragged out.
Sand, was your 'dog ear' from a recon or the mx?
I've got my appointment with my BS tomorrow for the results of my mx and to see where we go from here. I'm having a great deal of difficulty with my exercises because my mx scar under my arm seems to be 'anchored' at one point and I'm not making any progress with arm movement. Thanks Cress for the advice again, I removed my own dressing (very brave for a wuss like me) and had a good look and a good cry. My OH says 'well it can only get better with time'. He's right, but my scar is hideous and much longer than I thought; I didn't realise that it would go all the way under my armpit, nearly to my back.
Tomorrow I have an appointment with my onc to discuss rads. This seems like it's never going to end. I think I'll be on Tam shortly, oh the joys of SEs!
I've tried on all my Summer clothes on today, all of them either show my softie or don't fit anymore so I'm currently still wearing Winter clothes. BooHoo. I'm getting really good at feeling sorry for myself, it's all the practice that's making me so talented!!
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Hi, no one's posted for a while, I hope that means everyone's doing well and out enjoying the sunshine.
I'm now 1.5 weeks post mx and am doing OK. I hadn't realised how much more difficult the post op exercises would be after my mx compared to my WLE and ANS and I'm finding it really difficult, as if I'm streching my skin rather than than muscles. Does anyone know if this the actually what the intention is?
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Cress, thanks for your response to my other post, I'm not sure why I didn't put it on this thread other than that it was worrying me in the night and woke me up, that's never my best time for thinking straight. Anyway, I've been back to the GPs and saw a different nurse (I'm not sure why, the last one said I'd see her again, but no worries) who was really nice. I told her I was worried about how the dressing had been applied and she said 'no problem', she was VERY careful taking it off and it wasn't as bad as I had imagined, these things build up too much in my mind sometimes. I've got a shower proof dressing now too. I've got a very soft lump at the back of my armpit that shows more from the back than the front, she thinks this might be a fluid build up and has set me another appointment for next week to check how it's going on, so all's as well as can be expected. I'm being careful with the exercises, they're a lot more difficult after this mx than they were after the WLE and ANS surgery, my skin feels as if it's going to burst open. Did yours feel like that? I'm so pleased that you had a good holiday, it's just so heartbreaking to have come back to such a sad event.
SP, I don't know a lot about secondaries, but this must be so distressing for you. Listen to what Cress says, she has lots of good advice and good luck with the WLE, when's it going to be done?
QD, Claridges sounds fab, but sorry to hear the shocking news.
Maire, does the funny taste from tam last for long? The thought of a funny taste for 5 years is ominous. I'll be on it soon too, I hope the night sweats and hot flushes don't get any worse, they're only just bearable at the moment. Did you say you get cold flushes too? I do, I get so cold that I'll be wrapped up in cardies and shivering while OH is in a T shirt!
Lisalou, it's great that you're feeling a bit better and well done getting your pay etc sorted out.
Cybele, I'm so impressed with the swimming, I can't wait to have a go myself, but you'll have to pretend to be impressed when I anounce I've done two lengths! Have a great holiday, you deserve it.
Lolly, happy Birthday! I hope it's a good one.
Big one sided hugs to all.
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Has anyone had an issue like mine? I'm not sure if I'm being paranoid or if it's something I should be concerned about. I had a mx last week and have had to go to my GP to have the dressing changed twice. The first nurse I saw removed the pressure dressing that was applied when the surgery was done and she replaced it with two long shower proof dressings which had to overlap because the wound is long. This was OK and I was able to have a shower. The next time I saw a Sister who removed the shower proof dressing and put on one long shower proof dressing and a shorter non shower proof dressing. However the sticky part of the shorter dressing is actually stuck to my wound. I've got another appointment tomorrow to see the same Sister for a final dressing change and am dreading her removing the sticky part that's on my wound. Do you think I'm being paranoid? And do you think I should insist on a shower proof dressing all over?
I'm not sure if I'm being paranoid or overly panicky or even if it's OK for the dressing to be stuck to my wound.
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Hi Beeny, I wasn't given a bra, just a softie that was brought into my room when I was asleep. The softie is completely wrong for me and I've found that a rolled up thermal sock with non slippery surface that I was given for Christmas actually gives me a better shape than the softie!!! I've worn baggy jumpers over the top and a scarf when I go out which isn't often yet. I'll need to get something more suitable sorted out soon though.
I haven't been able to sleep any way other than flat on my back at the moment which is becoming uncomfortable. I can't wait to sleep on my side again.
Is the swelling the fluid? It's about the size of a tennis ball and feels like it might be fluid because it wobbles and swings around a bit! I've got bruising down my side that goes as far as my waist, it's gone yellow at the moment, not very becoming! Does the fluid just disappear? I might phone the BCN, I wish they had told me about this and the sutures before the surgery.
I saw a message somewhere on this forum where a lady had put a tissue between her scar and her softie, she found it made a very big difference, but I suppose we're still on very early days at the moment.
Lucylou, I'm glad I didn't have drains having read your experience. I think I'd rather have the swelling.
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Well done, Beeny, I'm glad that the trauma of it all wasn't so bad after all. I've had my surgery now too and although I did have some reservations about being 'uniboobed' it hasn't been as bad as I initially thought. I had no drains either, I'm glad they are going out of fashion because the thought of coming home with them in seemed more horrible that the op itself somehow.
I've got dressings on mine; a presure dressing was put on first so I had to get it changed by the nurse at my GP on Friday. I'm glad I decided not to change the dressing it myself as suggested by the ward nurse because I would definaltely have picked off the little bits of tape that turned out to be the equivilent of stiches!!! I had disolving stiches for both of my WLEs so didn't realise it would be different this time. I think I would rather have had the glue though. Can you shower straight away with glue? I feel really stinky at the moment even though I've tried to wash.
I'm wearing a bra; it's the BHS version of a Belvia bra so I get the support on one side and there's no pressure on the other side. I've got a lot of swelling and numbness under my arm which is where it hurts most, are you feeling it there?
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Hi Tigerpig, I'm very glad to say that all went well with my mx. I stayed in for one night and had a room to myself which was good and the nurses etc. were really nice. I seem to have a very long scar, but the nurse at my GP who changed my dressing this morning said it was quite a neat one. I'm just tired and in a little pain now, but nothing the pain killers they gave me can't handle.
I've got rads next, my appointment to talk it over is in May when my mx has had some time to recover, then the other mx after that.
Have you a definate date for your recon yet?
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Well, I've got through the first mx. It was good that I did have to go in just in case because they re-did my bloods which were OK in the end. I'm now uniboobed but that's alright because I feel that a large part of the threat has now gone. It's been quite painful, but the nurses etc. have been very kind. I had to stay in for one night, but that was OK too. My scar is very long, far more than I expected, but the GP nurse who changed my dressing this morning said it was quite a neat one.
I've got my appointment with my onc to plan my rads in May and once that's done I'll have my 2nd mx. Then I'll be done until the recon sometime in the future. I'll be so glad to get to the end of it all, I'm sure you're all with me on that!
QD, great news on the shrinkage of Mr Lumpy, he's less than 50% than his former self, that's got to be good.
Border Collies, I'm defo going to get the Aloe Vera Gel, and congrats on finishing rads.
Lolly, well done finishing chemo. I think I'll ask for a rose or a pink ribbon tattoo when I have my rads!
Cybele, I hope the tooth is feeling a bit better today. I've got to venture to the dentist soon for a filling that fell out and a tooth that crumbled during chemo. I'm not looking forward to it.
Lisalou, I'm on no pay after 3 months full and 3 months half pay. I get stautory sick pay now (about £75 per week, better than nothing), but my company pay this and claim it back themselves. I didn't have to make a claim at all.
Wendy, great news about your eldest, such a pain thay your youngest has to come back from her honeymoon to be faced with these results whatever the outcome. I hope it doesn't spoil her holiday. Good luck with the pre-op, more blood tests, I'm sure you're sick of them.
Love and hugs to all.
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Maire, I just heard news of my company too, they are going to close down at the end of the year if we don't achieve impossible sales targets!! I'm not going to think about it for now.
Lisalou, I hope you're feeling a bit better, the only way is up from here.
Cybele, I've really enjoyed your blog, but I understand your need to move on from it. I've met a lady who started chemo in March and have suggested she reads your blog perhaps a couple of days in advance of herself so she can she how it went for you. I'm sure it will help her through.
I'm supposed to be going in for my first mx tomorrow and had my bloods taken for it yesterday with the intention of the BCN confirming I am OK to go ahead today. However, they left it until I chased them at 3.45pm to advise me that their telephone and computer systems are down and they can't see if my bloods are fit or not. So, I just go in tomorrow and see how it goes. They forget that it means getting up at 5am to be out of the house for 6am to get to the hospital for 7.30am just to check if I'm up to it. It's easy for them but VERY frustrating for me and my OH.
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Hi Beeny, I'm in a similar situation to you in that I've been advised to have two mx surgeries, one delayed to reduce the possibility of recovery issues before rads. I've had 2 WLEs with no clear margin, then chemo because they didn't want to delay further and to have the mx later. I told my BS I wanted a double mx (double due to family history) and immediate recon. He recommended that I had one mx before rads (to be done day after tomorrow) because he wanted me to be safe and deal with the BC as a matter of priority then to look at what else I want to do. You may change your mind in the time it takes, don't make any panic decisions you may regret. After rads I'll have the second mx and recon sometime after. I suggest speaking to your BS and asking for councelling if you want to have the 2nd mx, they need to know that you're prepared for it and are not making a spur of the moment decision. I had long conversations with my BS and BCN because I was worried that after the necessary treatment they would forget me, but I've been reassured that this isn't the case.
I understand what you're saying about being lop sided; I have an H cup and share your worries. However, I need to be safe first and foremost. The surgery for one mx takes much less time and the recovery period is shorter.
I've spoken to another BC lady who is currently waiting for a recon in June who has a G cup and she's coped well and looks good with the prosthesis, in fact she looks great.
I wish you all the best for tomorrow, let us know how you get on.
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Mandy, how did the rads go? I can't get in my jeans either so I've rejoined Slimming World to try do get back to my pre chemo size before the next weight battle with Tam. I need all the help I can get.
Cress, I'm so sorry to hear about Keri, she sounds like fun. But don't let that stop you from celebrating your own good news, I'm sure she would have been pleased for you.
Lolly, have you had your last chemo yet?
Maire, I think you did the right thing driving off without your children, I bet they couldn't believe it. You did make me laugh but I bet it wasn't funny at the time.
Cybele, I saw my PS yesterday and the BCN who works closely with her. Helen (BCN) thinks that the weight gain relating to Tam is mostly through comfort eating and perhaps the ladies not even realising that's the case, but I read somewhere that 10% put on weight, it didn't say how much on average. I'm relying on Slimming World and I'm taking up swimming after my second mx. I can't think who has made me think of that idea, Cybele Muse perhaps!
QD, I with you on washing out the chemo, I've washed every item of clothing I own and I've been leaving the bedroom window open even in the cold weather to get rid of the chemo smell. My OH wants to know how long this is going to take. I've thrown my 'chemo outfit' out now too.
MZ, it's difficult to think that any new cancer is good, who are they kidding?
Shellebelle, I had a WLE and ANS before chemo, which isn't the same as your surgery but I find that my armpit is still mostly numb and the area between the two scars often aches and I have a slight swelling under my arm, none of which they are worried about. I did all the excercises suggested until I got full movement so now only do them once a day, but the area still feels restricted. I'm assuming I'll always feel differently there but I'm getting used to it, it could be a lot worse.
Lisalou, congrats on finishing your chemo.
I drove my car for the first time in months on Wednesday when I went to meet up with the BC ladies from Shropshire. We had a lovely evening and it was so good to be able to speak to people who've been there and done it and come out the other side happy and confident. I hope it'll be the same for all of us.
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Cress, good lock with your onc.
Lisalou, good luck with your last chemo, you're nearly there, hooray!
Shellebelle, sorry to hear about your Mum. Congrats on your last chemo I hope your SEs aren't too bad.
Maire, I had my last chemo below my thumb because they didn't want to use veins that had already been used. I agree, it was very sore when they did it but the vein hasn't been a problem since. The only vein I have a problem with is the one from FEC 2, I wonder if it's because the chemo nurse spent a considerably longer time doing it on that occasion. Apparently if the chemo drugs go on your skin it will irritate and burn, it's no wonder our veins are poorly.
Bordercollies, I was told they didn't do the crook of the arm thing for chemo because they didn't want to spoil the veins for taking bloods.
QD, good luck with the scan and surgery meeting for next week.
Cybele, I hope you're feeling better today, I know how tough it is, I've cried more since finishing chemo than during. I had a complete melt down in front of my OH on Sunday, I was actually howling but couldn't stop myself. I don't usually do the emotional stuff in front of him because it makes him worry, but I just lost all control. Please don't feel you're on your own or that it's just you, we're all here for you.
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