Breast Cancer Now Forum

Flynnsmum · ‎08-09-2010

Hi If it helps at all I can add my own story, I was also having chemo over xmas 2003 for triple neg bc (3/3) and whilst my life will never be the same again on the surface things are OK. My dream came true & in the main I now stress over work & hair!! (unless I am due a check up of course!) and recently I have felt strong enough to try and loose some of the weight I gained during treatment (and comfort eating!). I often wonder how helpful it is to hear about someone further on in this journey, does it grate? or is it beneficial? I suspect it will all depend I imagine the treatments improve year on year and long may it continue. Best wishes to all Caz

Flynnsmum · ‎18-01-2010

How spooky is that, I had my 6 year check up tonight! I had WLE,G3,chemo more surgery and rads so I did the whole thing. I still stress about appointments and any aches & pain but more and more I feel like the old me (just a lot bigger!) There is hope, and progress is being made all the time Take care Caz

Flynnsmum · ‎08-01-2010

Hi Jane I was diagnosed in 2003 with G3 tumour and had 4 x FEC & 4 x other initials I cant remember (began with C I think) so 6 years down the line I would say yes it seems to have worked (so far) for me. I suspect however, its not that simple and that there are many other factors to take into consideration. I believe that the second undetected tumour my amazing Surgeon spotted is why I am here to tell the tale but who knows Good luck Caz

Flynnsmum · ‎07-12-2009

Hi It took me 4 years to freak out after seeming to 'cope' with the whole experience. I had been offered anti depressants at various times but always refused after all I was 'fine'! The best thing I ever did was join a 'Living with Cancer' group run by McMillan it was amazing & liberating to meet people who understood how scared I was every day, people who I could be honest with and best of all I could provide some support to others so for the first time since diagnosis I felt 'in control' I just wish I had found them earlier as my life has changed beyond recognition, it was like a door being unlocked and it has made me so much braver. I am now much more like the old me although I suspect this is as good as it gets but I will gladly take it and long may it last. Be kind to yourself and do whatever it takes but dont expect people to understand and know how cheated you feel Caz

Flynnsmum · ‎27-07-2009

Hi I am just short of my 5 year anniversary and so far so good! I feel that I have turned a corner recently after a rough patch last year when things came to head after watching my best friend loose her fight for life against BC. I had some counseling and went on a 'Living with Cancer' course which seemed to make a big difference as I now seem to be more in control. I expected to fall off the Hospital list but was told that whilst 5 years is 'significant' I will be called for appointments (every 4 months including mammogram so far)for 10 years so on it all goes! I now seem to have more good things happen than bad and long may it last but I will never be the person I was or loose that 'riding my luck' feeling either The only people who can understand how we feel is us, we are members of a club no one wants to join! Take care

Flynnsmum · ‎25-03-2009

My story is good news and bad in so far as the ONLY symptom I ever had was breast pain which turned out to be a grade 3 tumour but this week I saw my Onc for a 4 year check so that has to be good in my book. I was 42 and I had the pain over a period of about 9 months on and off. At first it was diagnosed as hormones and recommended to take evening primrose which helped (I thought!) but it came back with a vengence to the point when I got so fed up I went back to the GP (good move) and after a referal to the hospital my feet didn't touch the ground. At no stage was I worried about BC after all we all know what to look for its all about lumps! how wrong can you be!! With luck it will be hormones but maybe pain should be added to the checklist of things to be aware of Caz

Flynnsmum · ‎22-10-2008

Mary I so know how you feel, and I cant tell you the difference it made! Counselling was fab, it was all about me and the group blew me away, we all felt the same and I practically drfted out of the first meeting I was on such a high! no feeling a fool with there let me tell you! I bet your local oncology dept has got a McMillan Centre that will know where to go to find out about a 'Living with Cancer' course If nothing else they may be able to help with some support in the short term. I hope you feel yourself again soon Caz

Flynnsmum · ‎21-10-2008

Hi I have been reading the posts on moving on and just wanted to share my experience in case it may help I am just coming up to 5 years dx and I was doing just fine apart until out of nowhere I just fell apart earlier in the year. I started to have panic attacks and found driving particularly difficult (after 25 years!) all the traffic was going too fast and I fretted about breaking down/stalling on the motorway (38 mile round trip to work). To cut a long story short, I saw GP, and elected to have counselling which I found to be very helpful over the 6 sessions and discovered all to do with 'issues' over BC (another story for another day maybe!) but by accident signed up for a 'Living with Cancer' course run by McMillan. Talk about right place, right time! It was a daunting prospect but I needed to do something to get back on track,so with much trepidation I turned up to the first session and have not looked back. It was the best feeling to be with a diverse group of people who all understood how I felt, how scared/worried/panicy I feel so often, a group that accepted me, did not try to have an answer all the time. It was run by people that had cancer and as a group there was many different types including BC. We went on a 'journey learned coping stratagys, swopped hints and tips but most importantly bonded and we continue to meet as 'graduates' on a social basis but also keep in touch by phone/text etc. I would highly recommend the course (I managed to work my hours round it thanks to great support there) but not sure how widely publisiced. it is I then found out that BCC does a similar course run by proffesionals so take a look. I am just waiting for my yearly mammogram appointment and feel just as petrified as I did at year 1,2,3 & 4, I suspect that will never change, but I am prepared to put it to the test!! Take care Caz

Flynnsmum · ‎09-10-2008

Hi This may be old news but a site I have on my favorites is uklymph (forums). There is an MLD practitioner (Lynora) who seems responds to any/all queries in a very positive and informative way and I suspect provides invaluable info to take to medics as well as all the usual Q&A ,s from a very wide/diverse membership so great for treatment stuff (including mini trampoline bouncing!) There is also links to many other associated sites on the home page If only i was IT literate and knew how to provide the link! Flynnsmum

Flynnsmum · ‎05-10-2008

Hi S - Michael is based in Winchester, I found him through the MLD website and its well worth the 60 mile round trip to have the laser treatment. I can probably get MLD somewhere (so long as I can pay!) but the whole thing is sheer madness, he is a top class practioneer yet can,t make a living despite the desperate need out there! What a loss, what a shame Flynnsmum

Flynnsmum · ‎05-10-2008

Hi I have just remembered another one of my finds in my ongoing quest for that elusive cure for lympho..............bouncing on a mini trampoline! I kid you not! I read a fantastic book (I have racked my brain but unable to recall author, think it was Ann someone) that made it all sound so simple and more to the point obvious (all to do with pumps??) even better, as well as getting lymph flowing I would lose weight without the word diet being mentioned ! If only it was half as good as it promised but hey it was worth a try! If you google the concept you might be surprised not only can you do it in front of the tv it can be a surprisingly gentle excersise if things are difficult. I borrowed a bouncer (you are bound to know someone with one in the garage!) and found that I quite enjoyed it (though not enough to keep it up!) It is just something else to add to the mix! My latest find is Antistax has anone else used it? I often look on a lympho site and it has cropped up a couple of times so think it is OK to take as lots of BC/MLD expert input Flynnsmum

Flynnsmum · ‎03-10-2008

Rowena Have a fab time! I had forgotton how addictive this is! I look forward to more lympho chats soon and wear your sleeve on the plane!! Flynnsmum

Flynnsmum · ‎03-10-2008

Hi Its a while since I was on this site, wow what a difference! I cant believe there is a forum just for lymphoedema! is it sad to be thrilled!! I spent last night looking through all the posts and could identify with lots of the comments there, I have spent a fortune over the last 3 years on anything and everything that I thought could help (gullable I hear you say!) but have now accepted that there is no miracle cure (yet!). I managed to find Michael about a year ago and whilst it is bit of a trek it has been worth every penny as my hand/arm is as good as it is likely to get. He uses LL laser, does MLD and to finish off does a mean kinesio tape for good luck. He persuaded me to wear a sleeve (those horrid thick ones but Grade 1) until 7pm when he says it will start doing more harm than good (no idea why, but who cares so long as it comes off!) I go every 2/3 weeks and thought I had it sorted but as usually happens to me it was too good to last! because the NHS doesnt pay for treatment unless the condition is severe (and costing a fortune to treat!) and the credit crunch means that his private patient base has reduced drastically he cant afford to stay in business! Why can this happen? There are so few MLD practitioner's as it is and they cant afford to make a living because all the patients who need the treatment cant be referred until they are so bad that they cost the NHS a fortune, whats all that about?!! We all deserve better but in the meantime it is good to find a group to share my thoughts/feelings with (if you dont mind?!) Get your sleeves off ladies it is long after 7! Flynnsmum

Flynnsmum · ‎22-10-2006

Words of wisdom from nutritionalist (??) Hi After 2 years of trying to loose weight (gained 2.5 stone) a few pounds off here and there if very strict but as soon as holiday/special occasion/eased off.... straight back on again! I thought I would seek advise from a nutritionalist as felt sure that it was drug related. Not so sure it was such a good idea as she frightened me to death whilst blinding me with science (think she was Gillian McKeiths nasty sister!) apparently all those drugs are still lurkin and no matter how much excerise I do or how few calories I eat my body will still be full of \'cack\' (her words!) I think I need to cut out alcohol/dairy/sugar/wheat (thats just for starters!?) and eat linseed washed down with olive oil mmmm sounds yummy and for a treat have warm water with a freshly squeezed lemon (lucky me!) So what do I do now? forget it as what is the point or find out more about the biochemistry that I need to adopt.(allegedly!) She practically said having BC was my own fault as healthy cells could not become cancerous therefore I allowed mine to become unhealthy in some way. I think that there may well be something in what she said and think I might have a go at being kind to my liver/detox in a gentle way as surely cannot harm but well done all you ladies who have lost weight in the usual way which would suggest that it is all a load of rubbish anyway! CazR

Flynnsmum · ‎07-08-2006

Dont want to be a part pooper BUT..... CurlyC The key thing about lymphodeama is that the majority will NEVER get it regardless of what they do however if you are prone then flying is a major issue. I know as it happened to me, I flew out with a hand and returned with a paw that took months of expensive treatment to reduce and face a lifetime of wearing a horrible horrible compression bandage (believe me, Trinny n Suzanna would be pushed to find a summer wardrobe!) That said, I absolutely agree that we need to avoid hysteria and I was at the front of the queue to dye my hair/get a fake tan anything to embrace \'normality\' I would recommend that you do a rough test with a tape measure to see whether there is any difference between width of arms (10% is normal) and if so, ask about a sleeve for journey only to be on safe side. I wish someone had put me on alert as I suspect that I was on the edge and the flights tipped me over. Enjoy your hols CazR

Flynnsmum · ‎19-07-2006

Go for it Just to add another positive reply which suggests that more likely than not you will cope fine with the rads I had mine done on my way to work and can honestly say apart from 1 random day i was no different to usual to the point I was slightly concerned that they forgot to turn it on! but so far so good so they must have done! It barely effected by life and after surgeryx2/chemo it was a breeze! Good luck CazR

Flynnsmum · ‎14-05-2006

Dreams can come true! Hi I hated being off sick and longed for the days of being stressed out at work and having a bad hair day! well my dream came true and long may it last! bring it on I say............. I begged to go back to work and caused mayhem as working for a huge Company they could only deal with being sick or well not anything in between but we got there in the end and to me being back at work and thinking about something other than bc for part of the day was the best ever treatment. I am sure it depends on your job and the support you get on your return I consider myself really lucky. What I do know that since it all started my \'coping ability\' has drastically reduced it takes very little to tip me over the edge these days hopefully this will increase gradually and the fear everyday that yesterday was the last \'normal\' day I will have will decrease, we shall see. You never know, work might be just the step forward you were waiting for. CazR

Flynnsmum · ‎05-03-2006

Who pays /who doesnt As another mother of a child with epilepsy I decided that my views were too controversial to post. suffice to say I was upset but feel sure that there was no intention to undermine epilepsy sufferers

Flynnsmum · ‎06-02-2006

Endotelon/Flavay - Have you tried it? I have just joined LSN and got reams of info on lymphoedema including a leaflet on Grapeseed extract. It talks about a french product Endotelon which may or may not be the same as Flavay in the US. Does any one know how to buy/obtain in the UK as I was unable to locate. I know that it is fairly easy to buy grapeseed extract but I fancy giving this a go (you never know!). Also while I am here, (may need to transfer at this point to living with BC) does anyone run and/or attend a LSN support group. It appears that there is nothing on the South Coast for miles but does it matter? I feel that it would be beneficial to me but as there is nothing around perhaps others think different How are they run? what do they do? how often do they meet etc love to hear from you CazR

Flynnsmum · ‎06-02-2006

Endotelon/Flavay - Have you tried it?

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Endotelon/Flavay - Have you tried it?