Breast Cancer Now Forum

HI Swissy   I too have a very sore and stiff neck which I've had for about a year but it's getting worse and I wondered if you'd ever got to the bottom of yours?   Best   ALison     ... View more

Hi Preston girl, I'm so sorry, you've had a terrible time. I also had lots of infections and a tissue expander removed after the mx. It held up my treatment and I had to wait for chemo and radiotherapy after it had all cleared up, then like you on various waiting lists until recon which I had four weeks ago and nearly three years after my mastectomy.unlike you I think it's been a success , well so far anyway. A friend of mine also ended up going private because the hospital wouldn't do recon for reasons I'm unclear about. But it's very expensive. I don't live near you so I don't know anything about the hospitals near you, but I also had my recon cancelled three times in two months. Then I said I wanted to make a formal complaint and was told to contact the patient liaison person at the hospital. I did, by phone and email saying that I was very unhappy about the way I was being treated and saying I wanted to start formal complaint proceedings, like you I also thought that my original infection could have been nipped in the bud had my BC nurse given me better advice and looked after me better at the time. A very nice woman rang me back from the hospital and lo and behold they found me a surgery date that week! I had never complained before, I think the hospital in general is wonderful but admin systems all over the country seem to be terrible. So perhaps you should ask your surgeons assistant who in the hospital you start formal complaint proceedings with, get in touch with them and see what happens? Perhaps ask to see another surgeon at that hospital or ask to be referred elsewhere? Before you spend a LOT of money on private recon! My very best wishes, alison ... View more

Hi deeh, Yes do keep in touch, I'm now 4 weeks on and there's a real difference, standing upright, walking further - can do about ten minutes straight without needing to sit down to rest my back because walking is still a bit restricted, you realise that big steps stretch your stomach! But feel better and am going to start doing some work from home next week. Although I sleep for 2 hours most afternoons still. But like roadrunner I'm really pleased I've had it done and think it will make a huge difference to me.x ... View more

Hi deeh So sorry, I've been at my parents and not able to get online for a few days. It's now nearly four weeks on and I'm much more upright and I can walk further, but if I sit for any length of time it all contracts a bit. But absolutely no pain, I've been putting aloe Vera straight from the plant on my skin on my stomach which feltmlike a cheese grater had been taken to it, and that's helped a LOT. I ve always been told that the recovery was 2 to 3 months - can't drive for 6 weeks. I didn't really believe that but I can see now that might be- it's the walking upright which is slow to happen and which slows things up, and I get tired in the afternoons, however I've read posts from other women who've recovered really quickly, driving after four weeks and able to be upright much sooner than I seem to be able. One reason I think is that they had to take a vey big wedge of skin and fat from my stomach to give me a breast anything like the size of my other one, I had reduction on the other side at the same time. The waiting lists for delayed recon seem to be long all over the country, and I had my op cancelled three times! Somif you're considering it you might want to go ahead and get yourself on the list, it'll probably be a while anyway and if you change your mind, then you can. Don't tell them you have doubts! I have to say that I'm pleased I've done it even looking as horrible as I do at the moment - the scar on my stomach is HUGE! but I didn't realise how much I was being affected mentally by my one breastedness until I was given two again. I thought I'd completely come to terms with it, but apparently not, because I now feel like it's finally over. Do feel free to pm me if you'd like to and I'm more than happy to tell you my experiences as I recover. Take care deeh and all the best Alison ... View more

Thanks very much Cornish girl for posting that link to the website and article re sugar and cancer. Really interesting and something of a relief! I've always thought it seemed a bit simplistic to say that cancer cells feed off sugar And also thanks to those who've posted some great recipes on this thread. ... View more

Hi sasky I'd strongly reckoned support pants, I didn't get mine really sorted out in time and should have taken more to hospital - I was very swollen so had to have huuuge ones at first, that are now a bit big. The stooping is because the scar across the stomach is vey tight and uncomfortable to stretch, but getting better - a bit slowly in my case I think. ... View more

Hi everyone, So sorry, I posted then couldn't find post, being a bit dim I think. Now three weeks after diep op, I'm still not completely upright, maybe my skin not as elastic as some of you others! They had to take a big slice though so maybe it 's that. I had a slight skin infection on the recon boob where a stitch had gone a bit sceptic so on antibiotics that very nice nurse at the gps gVe me. I took myself down there as I was a bit nervous about changing the dressings on my boobs, the recon one and the reduced one. The stomach scar I could do but the boobs felt so fragile and having been through lots of infections after my mastectomy I didn't want to risk anything. The nurse was fab and completely understanding about it. Mentally feeling really good, sleeping a lot, two hours in the afternoon and the eight hours straight through the night - more sleep than I've had in my life! I Agree about the cleavage, you don't really know how how much you've missed it until it's back and don't have to put that horrible prosthesis on all the time. I waited a long time for mine, nearly three years since mastectomy, I think I fell between stools and if I'd pushed more I could probably have had it sooner. Then i was given a date, then cancelled, and then two more that were cancelled. Then I made a fuss - a big fuss- and was given a date that wasnt cancelled. Now looking forward to full recovery, and walking normally! ... View more

Hi deeh, I've just had reconstruction, a Diep flap, nearly three years on from my mastectomy. I would liked to have had it sooner but have been on various waiting lists after initial op, then chemo then radiotherapy. I can understand not wanting to have more surgery, I was dreading it, the anaesthetic, being in hospital, the long recovery, but I so hated that prosthesis and had hated the way my body looked I thought it was worth it. I still look like I've been in a car crash, but it's three weeks on so early days, it' s not painful, more uncomfortable and I'm still not able to walk completely upright, but Soooo pleased I've had it done. It does feel as if I can really move on now. It could always come back I suppose but I tend to ignore that aspect! ... View more

Hi Figaro 7, So sorry to hear you're so upset and not being paid by work sounds like a nightmare. Can you claim sick pay from the state if not from your employer? Re the diep reconstruction, I had delayed diep reconstruction three weeks ago, I don't have high blood pressure so I don't know what the extra complications that would mean, but have you discussed them with your surgeon? They should be able to go through it all with you. duffer the person who's offering you her blog kindly sent it to me as well and it's really good to read. Re the diep, yes it's a huge op and three weeks on I'm still not able to walk completely upright but I'm fine and so pleased that it's been done, I've been waiting for almost three years. I had a mastectomy, then chemo then radiotherapy, then on various waiting lists until three weeks ago. If you are being offered reconstruction at the same time as your mastectomy that probably means you're not having radiotherapy? You will need help after the reconstruction, you're not able to lift anything for a few weeks, or get around to do anything. So if you have friends or family who can help then I'd take it! Please feel free to PM me if you'd like to know more detail about the diep or anything else Take care, alison ... View more

Hi I had a diep reconstruction a week last Saturday. I came out of hospital on the Thursday afterwards. Luckily my husband has been at home all the time since then because I really couldn't do that much. Not much pain from about the second day after the op. Am now down to about 4 paracetamols a day. Re the running usual errands - I doubt very much that you'll be able to do anything for at least three or four weeks afterwards. Some women do recover more quickly and you may be one of them, but it's ten days on from my op and I can't walk upright. You're not allowed to left ANYTHING heavier than a kettle, you won't have much energy, and in fact standing for any time is really hard on the back because you have to bend over so I think the 10 minute walk to the shop is not going to happen. At the moment I look like I've been in a car crash but every woman I've spoken to or read their thoughts says that they're glad they had it done. Like you I wanted to not have to worry all the time about what people could see - or rather what they coudn't see! I had an mx on the left hand side nearly three years ago,then chemo then radio therapy. Lots of infections and seromas and infected tissue expanders after the MX so the last thing I wanted to do was go back into hospital and sit on my bum for weeks afterwards! However it feels like the worst is over and I just need to take it steady and remember to do my exercises. I wanted to not wear that blasted prosthesis any more and to have a cleavage. This bit is the price I have to pay for that! Best wishes Alison ... View more

Hello everyone, I haven't been on the site for ages. I think I just got sick of the whole thing and just put my head down and got in with it! Chemo sucked but is over, just finished rads on Wednesday, had 15 and skin fine. A few odd pains in the breast area but apart from that fine. I too put on weight, lack of exercise and chemo, and probably the chocolate and cake I eat ! Have started doing pilates, never done it beforenbut started just before end of chemo and I really do like it. My lasting hangover from chemo is very sore ankle joints and I seem to have developed arthritis in one thumb...and the pins and needles in ne hand still there but not as bad. Anyone else had painful joints? I had to have another MRI scan - an hour in that horrible tube! - just in case I had a lesion on my spine that was causing th pins and needles, thankfully it wasn't, apparently a disc in my spine has moved and is pressing on a nerve...how did that happen? No one seems to know! I kept a lot of hair due to the cold cap, but I have to say that if I ever have to go throu chemo again I'll just go bald, that cold cap was truly horrible. Lost all my eyelashes and eyebrows, they're just starting to come back...sadly the hair on my legs has come back with a vengeance...is there no justice? You all sound well, and coping, and what a tip top bunch of women you are. Even when I wasn't posting or even reading, just knowing that you were all going through it really helped. I'm going back to work next week and I must say I'm really looking forward to it..I've been off since July last year! Lots of love Alison ... View more

Thanks for the posts . I fact it got a bit better just before chemo 4 and I'm only slightly getting it a week after chemo 4. It's a tingling in my palm of my right hand which is there a lot of the time, but I was getting a completely numb hand followed by very painful pins and needles for about half an hour at a time, tried to see the gp but couldn't get an appointment until the day before the next chemo and the hospital said they get a doct,or there to see me, in fact they didn't but because it had got better I didn't make a fuss. But that's very interesting about eating greens and bananas. I eat quite a lot of greens, but probably not enough and I hardly ever eat bananas so I'll give it a go.. Happy new year Alison ... View more

Hi I agree about the third beingtheworst. I was dreading no 4, not because I have problems on the day,but I HATE the week following it, feeling slightly sick,tired and sorry for myself. And i hate most of all, the way I smell for a week. Chemo has a smell that seems to come out of every pore and in your wee that I absolutely hate. But 4 is now over and I too have that. 'light at the end of the tunnel ' feeling. But after no 3 I really wanted to not go back again. But I think I would have has a much worse time if I hadn't have had a portocath fitted before it started they're wonderful, no pain, no collapsing veins... I have terrible veins so they agreed to fit one. Yu may haver fight for it at your hospital but its well worth it. I really recommend that you try having some sort of line fitted. Best Alison ... View more

H Kitkat, Thats really horrible that you've got to wait another week for more details. That happened to me too as my iniitial tests and results were over the double bank holiday earlier in last year, But they told me they were pretty certain it was cancer even before the results came back. But they actually were great and told me what the likely treatment plan would be , even at that first appointment. Bit of a shock but at least I knew. I don't know which hospital you're being treated at but I thought that most places now allocated you a breast cancer nurse even when they're not certain but suspect you have. That's what happened to me anyway, although to be honest I thought my breast cnacr nurse wasn't very good and asked to not have her any more. But some people have really good ones. It might beworth ringing the hospital on Tuesday and asking if you can speak to the one of the breast cancer nurses there anyway, and asking her any questions you have. Please don't feel like a wimp, it's an awful situation to be in and nobody can take the news they may have cancer, well. Is there anyone you can take along with you to get the results? It doesn't sound as if you have very forthcoming staff at the hospital you're going to , so you may have to push them to give you more information or support next time you go, or take someone along who'd be prepared to do that for you. Much love Alison ... View more

Hi kitkat, How are you? How was your Christmas? Did you manage to enjoy it at all? Don't worry about your boss, what I've come to realise is that although we all know that people deal with these things in their own way, a lot of the response you get is an attempt to normalise your illness, they want it to ne ok for you and so try to act as if it's not s big deal. Of course it IS a big deal but some people can't really cope with it and it's not from a lack of concern, almost the opposite really. When you've got the results you'll feel a lot better, no matter what the results weirdly! You could write a list of things you'd like to know about, like the Hrt , and don't be afraid to ask anything you like, that's what they're there for. Much love Alison ... View more

Hi everyone, Happy Christmas to you all! Hope you all managed to enjoy it at least a little bit. Managed to stay up VERY late and drink too much, I didn't mean to! The night before FEC 4 on Friday. Got off quite lightly I think. Felt okish over the weekend, even managed to make a version ofndinner yesterday, but today am in bed , and bored but unable to do anything ! Pins and needles got better towards end of week 3 and are only mild now which is great. The end feels in sight now for us all, with only2 to go for me and less for those others. Think I can face another two goes on the dreaded cold cap. For those still waiting to start, then it's doable, you do get through it and time goes quite quickly? Love to all Xxxxx ... View more

Hi To those wondering what a portocath is, it's a device inserted under the skin in your chest which allows access to your veins for chemo or any other drugs you have to have intravenously. I had one put in when I had to have lots of canulas in hospital and had a terrible time with them. It'd usually a general anaesthetic to have one put in, some have had a local but I wouldn't fancy that! The portocath is invisible on the outside apart from a small scar whe it ws inserted and a bump where it's lying. Then every time you have chemo, a special needle is attached to the outside and off you go. It's brilliant and I'm so please I had one. Some places apparently don't offer them unless you fight for one,unless you're private. I was lucky in that the hospital I ws being treated - royal marsden - Did offer them. But well worth fighting for. Alison ... View more

Hi Thanks for these posts. I'm having problems finding a bra that doesn't ride up so I'll push the boatnoutnand get one from the site you've just posted. I haven't had recon yet, won't be for another year, and my temp implant had to come out so I'm completely flat on one side. I'm waiting for a heavier prostheses fitting, but in the meantime bought a chicken fillet which isn't heavy enough to keep the flat side from riding up. Any tips very welcome. Happy Christmas everyone, Alison ... View more