Breast Cancer Now Forum

N Really can't beleive it. I was able to move away from the forums for a while and then circumstances made me return. I have to say that advice given to me has certainly helped me through the last week or two. I feel very sorry to have to say goodbye to Norberte and really hope that she will be able to see her way back to the lymphoedema gang again. I am sure that all of us would dearly love to see her return. N if you are reading this I wish you and Mrs N all the very best and have to say a very big THANK YOU for the all help/ advice you have given to me through my bc journey. Take care, Maggie xxxxxx ... View more

Dear Quail, I can't answer this from experience, but given the risk from infection and the fact that you are not seeing the ld nurse till the end of the month, I would give your bcn a call tomorrow am and ask their advice. I am sure that there will be someone along shortly who may well be able to help you more either with personal experience or a better knowledge than I on ld. Good luck, Maggie ... View more

Well the day got worse as I was busy trying to sort my transport out. I managed to get a number into the actual people who organise the transport. This silly lady told me that I was not entitled to it as I was working and therefore mobile and if I didn't like it I could contact the PCT as they were the ones who were holding all of the money!!. I was so cross that I went "surfing the net" during working hours and came across the DoH website and eventually found their transport criteria. I then phoned the PCT with the upshot that I may put in a formal complaint - discrimination against disable people, as the 1st woman didn't even bother to find out any of my details. In fact I am registered disable in receipt of DLA (high rate mobility) and STILL WORKING!! If the govn give me my benefit, then who was this woman to question me??? The PCT are phoning me tomorrow as they know a mistake has been made and I think I will get the transport and probably be coerced onto the patient transport group to stop this sort of thing happening to others - as if I need this at this time! If not then the secretary at the National Hosp will def get a phone call. My daughter is coming home from uni tonight so things should get easier - at least we won't be travelling back and forth to much now - we were there on Mon as she had to go to the breast clinic with a large lump and in the middle of her exams as well. Pleased to say, all was well thank goodness as I really couldn't cope with that on top of everything. I just feel for her but the Uni said they would give discretion due to extenuating circumstances for her exams. She finished today so other daughter is going to pick her up for me which is just as well as it has been a bad day and I am all tramadol'ed out!! Am about to buy the lilac lymphoedema bracelet for the non taking of bloods etc - does anyone have the link for the site? I know that it was on the other old forum but that has now gone so need a bit of help. Sorry to go on but really need to get it off my chest so to speak and this forum is certainly the place. I know that it is full of lovely helpful ladies who have probably had some of these problems and will have "been there and got the T shirt" so can I ask for their advice, Thanking you in advance, Maggie xxx ... View more

Dear All, Just a quick update as really stressed today as it all appears to be going wrong. Have had all of the family on the phone giving me grief interspersed with talking to stupid transport people - sorry to any out there but my ones take the biscuit. I am trying to get transport for my pre op but it is really hard, plus when I am admitted for my surgery, they have already told me that they can't get me there at the time required and that it will be an hour later and that the hospital can just put my surgery on hold until I arrive - yea right!!! Anyway now have a new number to try tomorrow so heres hoping. I know I am being stupid, but when discussing my pre op with the lady that organises it, apparently I only need to see the aneasthetist if I am on blood thinning pills. When I informed her off my breast cancer history, reconstruction and lymphoedema, that is not serious enough to warrent a visit to see one. I went on to explain that I can only lay on my front for up to 5 hours and then I would probably encounter some problems. this didn't worry her as I still wasn't on the right tablets!! my surgery is approx 5 - 6 hours so I may well have a problem. I can see me telling all in the theatre prior to my surgery and holding up the list until someone listens and thats before I tell them all about the restrictions regarding my lymphoedema of my leg as well - I can see I am in for some fun and games:( I know I will pester the nurses to ensure that everyone and I mean EVERYONE knows about my lymphoedema and the necessary restrictions to prevent it becoming a problem I have decided to buy some sports bras for immediately post op as I doubt if I am able to get my compression bras on but I am going to have my hubbie do my mld post surgery especially as I will have been on my front for a good long while - I am not trusting any of the nurses and until I feel ok to argue, he can do something to help me!!! Well do hope all of you are ok, thanks for all of the advice, will be following the instructions like mad. Hope you are all ok, especially N as she fights that cellullitis and infection. Take care, Maggie xx ... View more

Hi All, Really not very clever today, back playing up big time and I have had to do the mercy dash to daughter in Uni as she has been referred to breast unit at Chelmsford. Appt on monday but she is stuck right in the middle of end of year exams and her research proposal for her dissertation. Eldest daughter also had car accident yesterday so my head and hers all over the place, thinking the worse. Not only is back playing up but recon boob even more swollen than usual and I have an almighty headache - can't quite work out why. I have also try to add a couple of people as friends but again can't quite work out how to, any takers wishing to share their knowledge??? N, hope you are feeling slightly better now and lovely to hear from you. You must take extra special care especially as the gold medal winner!!! 🙂 Hugs to all, Maggie ... View more

Dear Gang especially the gold medal winner!! Just touching base with you all. Sorry to hear of your predicament N it is just so unfair but then you have won the medal, awarded for being the best. Haven't been around for a while but when time allows, I pop back on. Trying to get used to the new look forum and finding my way around. Really not brill with computers but getting there. Am going to post for some advice so would appreciate any ideas/ help that you can give. Wish I could offer a solution for you N but nothing sensible comes to mind so I can only wish you well and loads of big positive, body healing hugs. Take care one and all, Maggie ... View more

Hi Linda, So glad to hear that you are ok and back at home. Have been thinking about you and how you are progressing. Will send you a pm via e-mail. Love and hugs, Maggie xxxxxx ... View more

Hi Liz, I am not an expert but I think this is pregnancy related and not just lymphoedema. Therefore it is probably best if you contact your midwife and ask her for some advice. I am assuming that your visits to the midwifery team are now increasing with the last few weeks of pregnancy approaching and that they test your urine for protein, check your blood pressure to ensure it is not high and also check on oedema in limbs including fingers and toes to exclude pre-eclampsia. Therefore it is probably sensible to speak to them as this does not need to become an issue for you and if the teams were really sensible they would even talk to one another!!! Please let us know how you get on. Kind regards, Maggie ... View more

Hello Lilasdeprovence, Welcome to the club that no one wants to join. I know myself that waiting is a very difficult time for all of us. I suggest you contact the helpline here, number is at the top of the page or your Breast care nurse if you have been assigned one. Come back and let us know how you get on. Regards, Maggie ... View more

Hi Ladies, I started a thread called "English Threads t shirt issue. However to update you all, I e-mailed Suzi Perry the model of the t shirt and I thought you would be interested in her reply. "Hello Maggie, As I am sure you will appreciate, my intentions in wearing the t-shirt were entirely honourable. I have friends who have battled breast cancer and indeed I had a nasty scare a couple of years ago so I felt that this was agood way of raising much needed funds for breast cancer awareness and research for Breakthrough Breast Cancer. There has been a great deal of positive feedback but rather than upset and hurt any ladies who have been through so much, I will be withdrawing my picture from English Threads as soon as I get back to the UK. Please accept my sincere apologies and my best wishes to you Suzi" We will obviously have to wait until she is back in the UK but hopefully the picture will disappear of their screen soon. Regards, Maggie ... View more

Hi Ladies, I have had a reply from my contacting Suzi Perry. Please see below, hopefully the t shirt will disappear from their screen soon. Hello Maggie, As I am sure you will appreciate, my intentions in wearing the t-shirt wereentirely honourable. I have friends who have battled breast cancer andindeed I had a nasty scare a couple of years ago so I felt that this was agood way of raising much needed funds for breast cancer awareness andresearch for Breakthrough Breast Cancer. There has been a great deal of positive feedback but rather than upset andhurt any ladies who have been through so much, I will be withdrawing mypicture from English Threads as soon as I get back to the UK. Please accept my sincere apologies and my best wishes to you Suzi Now all we have to do is wait. Maggie xx ... View more

Hi Sissors, Glad to of been some help. The trouble I found was that no one includes colophony in their list of ingredients so have found out a lot by trial and error. The pads in Boots sound a great idea and I hope they work Take care, Maggie xx ... View more

Absolutley brilliant news, CONGRATULATIONS to you and your family, Maggie xx ... View more

Hi All, I had this happen to me following surgery. I am now allergic to nearly every dressing - to put it into perspective I am actually allergic to the adhesive the dressings use not the fabric - usually colophony, found in a variety of products not just dressings. I also became allergic to the dressings used to cover the drip needles as well, so a real worry for the surgery I have had and for the future surgery I am expecting to have in the next few weeks. I was then prescribed mepilex light or allevyn drssings. They appeared to be ok and so these will be the ones that I now/ will demand in future. Needless to say they are quite a bit more expensive than the conventional dressings but worth every penny if you are suffering.If all else fails, demand to have the involvement of a tissue viability nurse whose job is to deal with tissue damage and has a wealth of knowledge about these issues. Hope this helps, Regards, Maggie ... View more

Hi All, Well haven't had my mld but looking forward to it, did get informed that there was a waiting list so ...... Not had a good week, lots of back and leg pain and this time trouble weeing as well. - yes tmi I know. Now started on pregabalin and diclofenac so at least sleeping very well, so well having difficulty waking up and getting to work. Saw occ health today and have been well and truly told off, result have now booked some annual leave so that I can have a rest and a good sleep!! Also waiting on my date for surgery, really not very good at waiting - I WANT MY SURGERY NOW!!! and then hopefully pain will be under control. Thanks for the ld link, have ordered the info etc. Regards, Maggie xxx ... View more

Hi All, Well, I have only just surfaced, back has been really bad so have lived this week end in a drug haze!!! Thank you for the info re the dvd's I must get on line and buy them except, I will have to do one better than the rest of you and buy the 1 for the arm/ breast as well as the leg!!!!! I do recall that my lymphoedema nurse said that my course of mld will be daily for approx 3/4 - 1 hour a day. Does this sound right to you experts? I must admit it will be a nice break as I will take the week off to really get the benefit and enjoy my "me time" Hope the weekend has been good for you all, Take care, Maggie xxx ... View more

Dear Lulu, What awful luck for you to have this happen, hope scans go ok and huge cyber hugs coming your way. You have always given so much support to all of us on here, its time to let us support you. Take care and all the best, Maggie xx ... View more