Aww Daniela and FizzB, you have inspired me at this very difficult and reflective time of year, thank you. I really did enjoy reading your posts. FizzB, I love the quote and will most certainly be looking up that film. Thank you once again, today really is a good day for me xxxxxxxxxxxx.
No wobbling for me, although am similarly reflective not only due to the tune of year but also a fortnight away from the anniversary of my surgery. The whole of the last three months have been umm ... difficult is the wrong word ... reflective probably covers it ... as it's obviously the anniversaries of some difficult diagnoses and decisions as well.
I am also looking at the postives now. I am cancer free (which is a biggie!!) and despite my ongoing discomfort with the recon I am doing more than a lot of women (and men!) my age who are "complete"! Despite the surgery, it's been a good year, I've had some fab surprises from brilliant friends and overcome some pretty big challenges ... and run the fastest half marathon I've ever done!! It's also given me the confidence to be honest with a couple of friends who let me down over this time; itself a difficult but empowering thing to do. I may have lost them as friends but I've also lost their negativity and the hurt they brought.
Happy New Year ladies and Daniela ... you summed it up brilliantly. You can do and be anything you decide. I watched a brilliant film over the break, "Soul Surfer" watch it if you get chance, it's a true story of an incredible young woman. Best line in it ... "I don't need easy, I just need possible". Here's to coming to terms with what life has thrown at us.
Much love to you all
Happy new year ladies!! Just wondering how you are feeling and if you have a positive head on?????? I personally had a wobble on new year's eve because, obviously, this time of year is one of reflection and I had a complete crying fit for the person that I once was and the person that I have now become. Crikey, this thing really does take it out of you but gotta carry on working towards my goal of 95% well-being!!! (I've got to be realistic - never gonna be 100% no matter how hard I try). Happy new year once again and I wish you good health, wealth and contentment xxx
Daniela F! I really could not be more impressed that you play rugby! You've got spirit, that's for sure 🙂
Bella60, you are a love. It's funny, we have all experienced that same lack of empathy, that thing that is supposed to be inherent in all human beings. That thing that I possess that I had even before I had a cancer diagnosis. I didn't get cancer and then suddenly develop empathy?!? It is interesting Bella60 that you were a nurse and still you were on the sharp end. It really is poop...
Anyway, I would be glad to hear your thoughts on something. I recently contacted the Independent Cancer Patients Voices organisation to ask if there would be a repeat in the not too distant future of the round the table discussion that took place between Consultants/Patients about breast cancer/reconstruction at the Breast Oncologists Society Conference earlier this month. They contacted me back to advise that there were no plans for anything else in the future but they would pass my comments on to a few contacts who might be interested in what I had to say. Just wondered what you thought and if you think I may hear something back? Night night for now ladies, keep in touch. You do help keep me sane and I thank you sincerely for that 🙂 Let's just keep in touch and keep helping each other along xxxxxx
Hi Ladies I totally agree with what you say especially soosie sue. I think plastic surgeons are egotistical and think they are creating something wonderful (not)Any ladies out there thinking of having reconstruction, Just do not even consider it. there is more to a woman than a pair of breasts. Maybe that should be our campaign, Breasts do not make a woman. Not ones made from numb muscle anyway As for empathy and understanding from nurses. The nurses that I encounted on my surgical ward could not be kind or empathic to save there lives. I had to spend a week with them, when I complained( I was a nurse for 25 years so I am aware of the code of conduct)They inferred that I was a neurotic liarNice way to treat someone under going major surgery for Cancer.Maybe thats where some of the anger comes from, Back to beating the Sofa I think.Anyway writing on this forum helps keep me slightly sane:
Oh no Bella 60, I hope you are okay 😞 Get yourself to the gym, it's the only thing that works!! Please don't get me on the subject of Surgeons, there are many of us who are more than a little disappointed. I was sorry to learn that you cancelled your appointment with the Consultant and that your letter has been ignored 😞 Please don't lose your spirit and make sure you get that response. I have an appointment in December and I will certainly be making my feelings known. We've got to make our voices heard. Naz, the steam room and jacuzzi are worth their weight in gold for the stiffness and tightness that this operation creates, keep in touch ladies xxx
Ladies!! You are like buses, you all come at once haha!
Right, firstly, Bigsib, from one woman to another, I am going to be completely transparent with you. In my opinion, the most important thing is to get rid of the cancer, whether this is lumpectomy, mastectomy or whatever. The difficulty in my case was that I was stupidly offered a mastectomy and reconstruction all in one go and was told that the results are much better with immediate reconstruction rather than delayed reconstruction. Now, here's the thing, when a specialist in the field of breast cancer/reconstruction tells you that they can get rid of the cancer and fix you at the same, that is a very attractive offer. However, Bigsib, I am qualified to say, some 2.5 years down the line, that a woman cannot be fixed and reconstruction is not all that. With the benefit of clarity, acceptance and time, I would say to any woman considering immediate reconstruction or delayed reconstruction, please think very carefully before doing it. No, I am going to be more candid. I would say NO!!! The fact is that yes, I am symmetrical and I suppose that to all intents and purposes if you were to look at the reconstruction you might think it was okay. However, to me it's nothing more than a lump of lard on my chest and certainly not worth 6.5 hours of surgery, a long period of recovery and goodness knows how much of the NHS's budget!?! I do not like the way the reconstruction looks or feels and I now have to live with this for the rest of my life. I also suffer tightness, stiffness and discomfort on a daily basis and have no relationship with that part of my body at all (for example, I just ignore it in the shower). Anyway, let's keep this thing in perspective. I was very fond of my boobs, I liked them but when all said and done, they are lumps of fat. It's not an arm or a leg and I believe that if women received better support at crucial stages, then women would make better choices. Let's be honest, reconstruction is not all that. With regard to the MacMillan nurses, I found this service lacking at such a crucial point. I am not saying that they weren't nice people, but they were lacking on so many basic levels. For example, lack of basic empathy and understanding, conflicting advice and an astonishing lack of continuity. I just wanted someone to hold my hand and tell me I was going to be okay!?! No such luck! Bigsib, concentrate on your health, your well-being and making yourself better. Don't make it worse like many of us have unwittingly done. I do hope that helps a little. I am sending you my support and apologise for the brutal, straight talking but I can only tell it like it is xxx
So sorry your PS did not acknowlege your letter, very rude!
Would it be worth trying to see a different surgeon for a second opinion?
These flaps should come with a blooming health warning, as they can really mess with the body and mind! Although I do not experience pain with mine, it is STILL very tight, 4 years down the line and still sits like a mound of muscle.
Not sure what else to say, you won't be alone, it just feels that way.
Hi to anyone out there. I was meant to see my plastic surgeon, but I cancelled , I wrote her a letter explaining in a polite moderated way. How the tightness and weakness is making me feelivery dispirited. I have arthritis in my spine at the level of the flap and at times I have a lot of pain. I wrote to her because of my nature I minimise complaints and do nt really express how it makes me feel. Iasked her to please acknowledge my letter , which she did not. I do not see any point in seeing her. I know I will be the one at the disadvatage I just know there is nothing to be done. I just so wish I had never had it done. and I struggle to see the advantages. I feel this afternoon a huge wave of anger swirling round. against the system. I know that is illogical, but I cannot help it. Probable need counselling, but at the moment more likely to want to beat the s--t out of the settee with a firm broom. Do not think of gps, chocolate and teapots come to mind,Rant over, think I will go and read a book. least with that you know you are not alone, unlike in the company of people you can be completley alone,
Hi , I'm a new girl on the block ..four and half years post double mastectomy. I joined up forum to see how the side effects of letrozle affected others. I am in a good place except for the awful joints and muscle pain which is making my life a misery. I am trying to decide on a reconstruction and it is very helpful reading your postings. I am a young 68 but sometimes feel daunted by the thought of more surgery.
Hi Poppy3, the Tamoxifen situation sounds like a nightmare! 😞 Hope you get it resolved soon, let us know.
Regarding nipple, no, sorry, you've not sold it to me. I am NOT having it done...nope deffo not. Some people are a rarity because they have an extra nipple, I will have to remain unusual because I only have one! Lol. Keep in touch and let us know how Tamoxigate turns out lol xxx
Hi. Well quick update on tablets. Went to doctors today to see if he could prescribe the type of tamoxifen only to be told RelonChem is a company not a brand. He started to talk about cost and how I can't have a prescription for more than two months again because of cost. Well I'm sorry, but I didn't ask to get cancer and just want to stick to a brand that has no side effects is this too much to ask? I;ve now been told to speak to my BC nurse to see if she can help.
Hi Soosie Soo - Mmmm how can explain in an unsqueamish way! lol, It was very quick,about 20mins under a local. Didn't hurt at all. Now here is a bit which I'll say really quickly....used a bit from the other nipple! Is that quick enough? lol. The other healed in a couple of weeks and doesn't really look any different. The hardest bit of it all is not being able to get it wet, no showers! It has been covered up for 5 weeks now which like I said is longer than I thought but going in the right direction. Happy to help with any questions you have about a recon. Hope you are doing ok? xx
Hi Poppy3!! Good to hear from you! I can't really help with the Tamoxifen thing 😞 When I was diagnosed, I went to see an Oncologist about the possibility of taking Tamoxifen but, because there was no definitive evidence to suggest that it could help with the type of cancer I had, I decided not to take it. I can see the sense in using the same brand every time. Is it possible for your Doctor to advise you on this? Hey, the nipple situation is all sounding good. I would appreciate a brief, unsquemish description of what this involves but am still adamant at this moment in time that I am not going there (just yet)! Lol...wishing you a speedy nipple recovery Poppy3 xxx
Hello Ladies. I've not been on for a while either. I have been having stage 2 of my recon "The nipple" It's taking a bit longer to heal than I thought but it's another step in my recovery. It's odd to see something there after all this time! My mx was only 18 months ago and although I can remember all the feelings I had back then I can't really remember what it looked like.
Soosie Soo - I feel for you waiting for your check up but it will give you peace of mind. Remember to write everything down you want to ask. If you're like me I think of lots of q's but when I sit in that chair I forget them all!
On another note does anyone else have problem getting the same brand of tamoxifen? All the research shows that sticking to the same brand helps with side effects but every time I go to the chemist they have different brands. The chemist then tells you to try somewhere else- like we have the energy to go to every chemist in area. One even tried to tell me the side effects could be in my head! I'm starting to think I should have posted this on the rant thread! lol Just wondered if anyone knows a way of sticking to the same one.Lots of love to all you lovely ladies...xx
Hello ladies!!! Not been on here for a few weeks, hope you are all okay if you are still there??? The reason I am posting is because I have noticed a post about a conference for the British Association of Surgical Oncologists (BASO) which takes place today and tomorrow in London. There is an open forum tomorrow at 2.30pm chaired by two ladies from the Independent Cancer Patient Voices. This is an event that I would dearly have loved to attend but, as it is in London and less than twenty four hours away, I don't think this is a possibility at such late notice!! If you read the details, I really believe that this would have been a good forum to discuss our opinions and beliefs about LD flap reconstruction and I am certainly going to make enquiries to see whether this conference will be taking place again next year. You see ladies, I am still on it!! Lol. I do hope you are all okay now that the days are shorter and colder and the nights are darker. I am still doing my very best to hit the gym regularly! However, I am also starting to get twitchy and having a few sleepless nights because I am back at the hospital to have a checkup with my surgeon on 4 December 😞 😞 😞 Grrrr, I really wish I did not have to go!! Love and best wishes to you all xxx
Aww Poppy3, keep working at the other 15% whatever you do!! Yes, it would be lovely to meet but it seems that we are very widespread from Manchester down to the south of England. Perhaps we can make something come to fruition in the not too distant future, it would be lovely and such a tonic for us 🙂
Daniela, I am so pleased to hear that you enjoyed the pilates and the laughs! I truly believe that it is only exercise that can help us now. It makes you feel so much better after a session doesn't it? It is that physical release from the discomfort, stiffness and tightness that we need. ANYWAY, KEEP IN TOUCH LADIES, YOU ARE SPURRING ME ON!!!! 🙂 🙂 xxxxxx
Hi Soosie Sue....I read your post on the train this morning and it brought a tear to my eye I could relate to your post so much. I don't think people really understand how you feel. If they ask you they're not really interested and if they don't you are the elephant in the room! My brother has just been diagnosed with cancer and he said to me "We never realised this is what you went through...we should have been there for you more". I feel like I have to work at being me every day, some days are harder than others. No matter how many books you read nothing ever prepares you for the real thing. I would say I am about 80% I think it does get easy especially with the tears but the mental and physical scars are much harder to deal with. I hope you are ok and lets keep in touch. Not sure if you ever meet up with ladies from this forum. I'm in Birmingham if you are anywhere close and would like to meet for a coffee. Take Care..xx
Aww Poppy3, you are most certainly not alone with us ladies on here!! Awful isn't it when you have a crying fit like that? I also get annoyed when people assume that I am just BETTER. Oh, how I wish I were. I still feel that I have so far to go. The reality probaby hit me like a ton of bricks about twelve months after surgery. I just could not seem to get any better. I was just stuck. Were you like that? I think I was simply expecting to get better when in actual fact you have to WORK at getting better don't you? Nobody tells you that do they?? Where do you feel you are at the moment? We are never going to be 100% are we but 95% would be nice. I'm probably on about 85% at the moment. Hope you are okay, we have just got to keep plugging away Poppy3, keep in touch. xxx
Hi Soosie Soo. I also had a crying fit on holiday. For me it was seeing the ladies on the beach and thinking I will never look like that again. I was fine after a good cry but did feel a bit silly sat on a beach sobbing! I have days of being very insecure... thank god my hubby is amazing because I do sometimes push him to the limit with how I feel - does anyone else feel like this sometimes? I don't think you ever get over the emotional side of it although I do try really hard to be me, but I feel like I will never be the same person. Its helps to read all these comments to know I am not alone....xxx
Awww Daniela and Bella60, I cannot shed much light on the ribcage situation?! It is not something I have ever experienced 😞 However, I do know that, having been to the gym for the first time in ages last night, my body feels much better already. I have not been for a while due to being on holiday and I felt soooo much better after. With regard to my crying fit, I think it was more to do with the fact that life is less than perfect now and there is so much I cannot do. The old me would have gone surfing with the kids but that is something that I feel is beyond my capabilities now, hope you are okay ladies xxx
Hi Soosie Soo May be crying even though it was all lovely was, what the space of the holiday gave you the necessary time to grieve and let go. I know I went to see the nutcracker ballet in London soon after my Dad died and the beauty of the ballet made me cry, because it was such a beautiful contrast to the ugliness that surrounded my Dads death. So maybe the beauty of the moment contrasted so sharply with uglines of your experience
Interesting that with out regular exercise , it all becomes stiff and painful. You would have thought that in time it would be stretched and give a little What I do nt understand is when I walk further than about half a mile my ribs become really stiff. Has any plastic surgeon given an explanation for this?. Apart fron exercise is there anything else that can be done., has anyone be offered anything.xxx
Perhaps an interesting fact ladies, I have been away in the six weeks holidays, came back for a week and then went away again. In the meantime, I have not been to the gym as I ordinarily would. Anyway, whilst away, I noticed a massive difference in the stiffness, tightness and discomfort. It has certainly got worse again and I am wondering how it will feel again once I start back at the gym. Remember, I use a combination of light resistance equipment (gentle, full body work out, top, bottom, back and front), some cardiovascular, swimming, steam room and spa jets aimed at surgery area. Hoping that I may start to feel better again soon. My word, my body sure is a lot more high maintenance than it used to be! Regards to you all! xxx
P.S. Whilst on holiday, I had an awful, crying moment. I was sat on the most beautiful beach, in the most beautiful place with the waves crashing and the sun shining, watching my family surfing, when I just suddenly burst out crying hating how I have been left after this thing. I had an over whelming sense that I will never achieve that feeling of optimum health and well-being ever again. Does this make sense to anyone??? xxx
I don't think LD is all hunky dory either. I am 6 years post DX next week and there is not a day which goes by, when I just wish that I had my natural and normal 36C breasts, instead of a mound of muscle which has no feeling to it.
I don't experience the stiffness or discomfort which you have, but do have some pretty visible scarring which greets me each time I look in the mirror!
I think there does come a time when you come to accept the mound. For me it took a long long time, years in fact. You are right, no counsellor or drugs will help with this one as it is permanent (unless you choose to have it removed).The healing has to come from within (somehow).
You don't sound ungrateful at all and it might be that you are still grieving for your old body?
Orrr Bella60, sorry you are feeling rubbish, me too 😞 I too have a very achy back, I am sick of it all!!! The only thing that truly helps me is the gym. With regard to the nipple, I cannot comment on that. Yes, I still want to meet up! I think it will do us good!!! I am going on a little jolly again with husband and kids before they back at school so will be back soon, love and respect to you ladies xxx
Hi Bella - I know I've decided not to go down the recon route but when I was considering it I was able to speak to someone who had and she was over the moon with hers and said how psychologically she felt much more positive and because of the recon felt able to move on with her life.
Even though I feel I've made my decision about recon I still look at myself in the mirror and feel sad about what cancer has done to me and my body and the fact that I will never get the old me back. BUT I try and stay positive and as time goes by it gets easier.
I would like to meet up with others because we all need support and for me Fri/Sat or Sundays are best x
Ladies I am reading the thread with great interest. My new problem postLD 12 months, is that in the last few days my arm and back is really achey, but not painful, with a sharper pain in my reconstruction,not bad enough for pain killers, but close. Any ideas suggestions. I have been doing all the usual stuff.
2. When they make a new nipple do they use a bit of the other nipple to make it. ?
3 The idea for a meet up has gone to ground seems to have fade a little, is any body still interested. I wo nt be able to make the end of the month , unless its a week end as I will be working. I am willing to arrange something still.
To Susie Soo I was reading your original thread, I am wondering if there ever comes a time when you accept the muscle lump. Is there any one out there who does think it all hunky dory, I am thinking that with the weakness, stiffness etc etc , that i cannot see myself thinking its all ok. I know its ungrateful, because I am "healthy" but I seem to me that i have a residual sorrow, that it is difficult to lift. I feel that no anti depressants or counselling will lift it. I just wish the LD could bugger off!!! and leave me alone.
I'm afraid I'm like Soosie; I just can't face any more surgery but really glad to hear that having a nipple reconstruction has made so much difference to how you feel about yourself. I've thought long and hard about a recon and have met with my Dr twice but I simply can't make the leap to say yes let's do it but that's me. I'm happy with how things are at the moment
It's one of those things... I couldn't wait for the nipple reconstruction, gave me something to look forward to while I struggled with numbness, pain, drains, post-surgery "bras" etc...
I can say -I keep saying- having that little bit of skin projecting out of the reconstructed breasts has made a big diffrence in the way I perceive my breasts.
good luck Soosie_soo whatever you decide xxx
Ladies, interesting conversation about nipples but no, I am too scared to go there! I am totally allergic to the idea of any further operations lol! xxx
Hello PoppyJ! You are an inspiration, I will get out there more 🙂 although I guess part of the issue is not the LD flap but the menopause and injections and tamoxifen's side effects...
Nipple reconstruction was a really quick recovery for me, no need to stop doing anything. I went to work etc... although the seat belt rubbing against it did slow down the healing (I drove 46 miles either ways to work though)... and I admit, breasts feel and look better with a nipple, you can even occasionally forget the scars, as the focus is on the nipple if you know what I mean! With the tattooing (areola and nipple) it just looks natural really - plus the specialised nurses who do the tattoing are so nice (well the one that did mine at least!). When going to the swimming pool, if there is a common changing room (has happened to me at a Spa in Budapest and somewhere else) having nipples/tattoing also makes the "stares" less frequent/visible. I would be much more self - conscious without them...
I'm sorry if I seem to have "stolen" Poppy's name (I've been called that by my friends for years! Maybe you won't mind too much). On the serious side, I only found this thread today - had single mx and immediate recon. in early 2014. I chose LD flap recon. and my surgeon warned me that "it won't look or feel like your own breast", but despite her warning I went ahead as I couldn't face going through another big op. at a later date. Woke up to find that she had added an implant to make recon. the same as the "good" side, but in fact it's much larger, and I've now been offered a "tidy up" to get them even again, together with a nipple. Not sure what to do. In the last few months I've got back to golf, walking, volunteering and generally trying to have as normal a life as possible. With careful dressing the difference isn't obvious, and I'm now used to the numbness and grateful I was treated early. Now have to decide whether to go ahead - friends say "why do you need a nipple" and I'm the only one who will see it, but I wish I knew what the recovery period is for this type of surgery - was lucky last year when friends rallied round and took me into their homes to recover but can't expect the same again. On the subject of bras, I find M&S Memory Foam quite comfy and the padding helps to even things out although there's 2 cup sizes difference. Sorry to ramble on, and best of luck to you all. Poppyj
Wow, great comments ladies, I can positively feel you all becoming more empowered and I feel that I am getting stronger now because of it too! I am so relieved to connect with others in exactly the same position. I could have literally written some of these posts myself! Let's keep this thread going and keep talking. Honesty, integrity and transparency are what it is all about. Also, exercise is key for us having had this surgery and also don't forget good sleep and healthy eating. I have personally found as well that a couple of sessons with a personal trainer has had more effect on my body than any physiotherapy I received!? Really love your comments about communication Daniela. You are right. Be strong and honest with those who we have entrusted to care for us. It's us that have to live with high maintenance bodies now! Anyway, I'm off on my jollies for a week now. Look forward to reading any more posts on my return! 🙂 xxx
You are so right Daniela. That's definitely another of the benefits of this thread (thank you ladies!!); it's given me the confidence to raise my problems with my PS when I see him in September.
And the nipples ... it's the tattooing that costs the ££s. Am thinking of choosing my own design instead, get a bit of control back & find something I actually like looking at!!
Just wanted to add to the thanks. This thread has helped so much in that I know I'm not on my own (or going mad!!) I'm 7 months post- double mx + LD and although able to do pretty much everything I could before now, including running and swimming (daniela - breast stroke is definitely the way ahead!! Still feels very odd - tight, heavy & generally uncomfortable but getting better - and do-able!!). Getting back to running has definitely helped my well being & even before that I managed a walk every day, definitely helped!! Just feel very let down by the lack of accurate information. I will never know now if I would have made the same decision.
Oh, and on the nipple front - to add insult to injury ... my NHS Trust don't cover nipples in the reconstruction funding!!! Seems they're an optional - and costly - extra!
Hello Ladies. This thread is a tonic in itself! Thank you Soosie Sue and Naz44 for your kind words just knowing others know how you feel is a big help to how I feel and I take on board what you say. there is a gap in the market for us to publish a "Rough Guide To Breast Cancer". It would have been great to have the knowledge beforehand what it is REALLY like. I have researched Fatigue and it is linked to Cancer and Tamoxifen but not very well understood by Doctors! great! I also think there is a lot of stress we go through/deal with without realising - waiting for tests/waiting for results/operations/recovery/self image/confidence/getting on with life...the list is endless. All spread over months while keeping that happy face in place! With that combination I guess there are times when our body says "enough is enough". I have also had the news last week my brother has cancer. I couldn't make it up! Life is crappy sometimes. So I think I have self diagnosed and I just need some time out.
Following this thread I feel like I have made new friends and I thank you for your support..xx
Aww just seen your post Afonlas. You only had your op six months ago. Take it easy...are you doing any gentle exercise? It helps enormously. I find now that after that op I HAVE to factor in exercise. I cannot manage without it 😞 I hear your comments about maybe your expectations being too high but do you not reasonably think that information should meet expectation? After all, how could you or I or anyone else know? Don't blame any of this on yourself and don't even think about having any more ops yet! Two years down the line, I still have no nipple and I am not interested! Don't even want to step one little tippy toe in that hospital again never mind have another op! I say make sure you are getting good sleep, eat well, exercise a little and be kind to yourself. Lots of treats and pampers! Difficult if you are working, looking after kids, washing, ironing, shopping, making food, doing bills or cleaning but you gotta do it Afonlas, good luck love xxx
Yep come on Daniela, if you love swimming, get in that pool! Build it up slowly. I also go to the gym now or else my body feels rubbish. Gentle work out, let the jacuzzi jets on the back, a bit of steam from the steam room and a gentle swim. Worth it's weight in gold 🙂 Let us know how you go on. xxx
Thanks Soosie_Soo! Agreed. I will try breast stroke 🙂
No more self pitying. Spot on with the need of actually following up properly with early diagnoses and correct treatment. xx
Wince, it was lovely to read your post. Maybe with the passage of time things do settle down 🙂 I really hope it's not gonna take me another 3 or 4 years though!? I wanna feel good NOW lol. It was also very interesting getting feedback from someone who had the diep, thanks once again xxx
Sorry for the massive post, it just all came tumbling out and I could not stop it xxx
Poppy3, bless you, you are only six months post surgery, you really must be gentle with yourself. I am two years post surgery and in the early days I benefitted enormously from Mediscreen counselling which my boss helped me to access through my workplace. This helped me to come to terms with both my misdiagnosis and eventual true diagnosis. It was eighteen months between my first appointment at the breast clinic, where I was given the all clear, and my true diagnosis which was Paget's Disease with widespread DCIS. The interim eighteen months meant that the cancer spread from a very tiny area to a very large widespread area thus meaning that very invasive surgery was inevitable. Poppy3, that counselling really helped me to deal with things. Additionally, twelve months after surgery, never having suffered from any mental health issues before, I was diagnosed with Post Traumatic Stress by my GP. The Doctor referred me to Cognitive Therapy with a Psychologist which helped enormously once again. If it helps at all Poppy3, I have always found that the help I have accessed myself has been lots more helpful than anything the hospital have ever offered me. Let me give you a few examples. One session of physiotherapy?!? Acupuncture at 12.00 o'clock in the daytime when I am trying to resume work and get back to some sort of normality!? Poppy3, I am empowering you to be gentle with yourself, give yourself time and then get yourself out there and find what works for you. We are all with you love.
Same goes for you Daniela. It must be so difficult having had a double ld flap operation but you must not give up . If you do, it has beat you and none of us are going to allow that are we? Life is like a motorway. You are stuck on the hard shoulder at the moment and just need to get back on the motorway.Try and get back swimming. What about gentle breast stroke to start? I love it Daniela, it keeps me going.
I am so glad I started this thread. I started it because I felt so lonely and bereft. I've felt like that for two years. Sinking and then swimming a bit, sinking and then swimming a bit. I also started it because I have long been suspicious of this type of op and wanted to tentatively ask for any positives AND negative experiences from others but I think it has gone one way and one way only. Lots of women have been let down and are continuing to be let down. I would happily stand in front of a woman, wave madly and shout 'Don't do it!'
l have enormous respect for this website but again I call for honesty and transparency. The booklet on reconstruction was not helpful at all prior to surgery. It is too sparse and clinical. It really does not help. I read the breast reconstruction booklet again the other night and find it shocking. It does not provide the full reality of breast reconstruction and surely this is the aim? Women rely on this information before surgery so it has to be spot on. I would be interested to know if there is a leaflet on breast cancer and offering support and empowerment to women about the positives of rejecting reconstruction. You end up minus a breast but hopefully the rest of your health remains intact!
Finally, I am going to lay it on the line again. There is so much campaigning and awareness in relation to breast cancer now including Cop A Feel (think that is what it is called). The power of social media is also strong and most ladies know what they are looking for now in respect of breast changes. However, good standards of diagnosis, treatment and aftercare have got to be in place to back it up. Perhaps this is where money should now be spent. Getting diagnosis spot on, turning breast clinics into proper breast clinics instead of human conveyor belts, offering each and every woman the CORRECT, APPROPRIATE treatment and offering good standard support and aftercare. For example, I personally have been looked after by a couple of very good Breast Nurses. Equally, I have experienced a complete lack of empathy and compassion and somebody who clearly was more interested in what they were having for their tea that night and when pay day was. This sounds harsh but cancer must = honesty. Comments, both positive and negative would be gratefully accepted. Let's keep this thread going and empower each other to try and get our brains into gear and bodies working as well as they can. xxx
Hi, I know just what you mean, I had a double mastectomy and reconstruction using the diep procedure. I probably would do it still but would want to know there are side effects like continual pain that I was told would not go away as it is scar tissue and I was not prepared at the loss of feeling either. I am very happy with the look and have nipples tattooed which made me feel much better, they became mine again and not lumps of skin. Like other ladies have said I can not do everything I once did and tire easily, but I'm very grateful to carry on with my life and now seize every opportunity to do what I may not have otherwise have done. I did however suffer from trapped nerves in my shoulder and lymphodema and my hands have lost some of their strength. I have had to adjust and now go about my day almost normal and happy. It's good to hear how others got on and feel that what has happened is quite normal, I'm now 6 years post major surgery and 5 years of reconstruction. I wish everyone the best and look forward to reading more thoughts. X