Potted history, Mx oct 09 with immediate diep recon. 2 ops to unaffected side to achieve symmetry but not yet achieved. Removal of a lump of fat necrosis from recon now swollen and aching.
Diagnosed today with breast lymphoedema. Also got rubbish back with many defects (mainly congenital but newly diagnosed) and staring at major spinal surgery in the next few weeks - awaiting date. Because of back probs, PS won’t do next breast op until next year following back surgery and neuro surgeon wants breast op done first - result stalemate and me feeling I am being “batted backwards and forwards” and not getting anywhere fast. Also very swollen leg from diep fat harvest and nerve problems from the back. Result is I already have to wear compression hosiery for leg and now from today compression bra. Just when everything should be settling, I seem to go from 1 problem to another and I am sooo fed up and the garments are such passion killers - whatever that is!!!
On top of all of this working full time as a nurse and finding it more and more tiring. I really don’t feel positive or like being nice to everyone all of the time but do try to ‘keep the stiff upper lip syndrome’ as I know there are a lot of others much much worse than me but just today feel really, really fed up and sorry for myself.
Nice to hear from you, trust you are ok. Today hasn’t been too bad but 2 years ago today was my diagnosis. Really did think by now I would be putting things behind me and moving on.
I spoke with the co-ordinator today and she is getting the neuro surgeon to phone me tomorrow with hopefully an update and an idea of timings. I have to say that I am beginning to “want” the surgery as it should give me relief from the persistant back and leg nerve pain. I have to say that continous pain is really the pits and yes I need to try and keep busy to keep my mind from straying to “unwanted” thoughts of the future. I am in the process of getting pension forcasts etc but on the other hand not thinking about what might be, problem is, as a nurse one just has too much knowledge but at the same time not enough.
With regard to the lymphoedema, I am now on the waiting list for mld but again the timing of my back surgery could throw the whole process out of kilter but we will have to wait and see, my therapist is just wonderful and she assured me that she could fit me in around my other appts etc and not to worry. My question would be, is it relaxing as I know it has to be gentle and she has said for me to take at least an hour out of my day for it? I can’t wait for some “me time” but not the way I would have wanted to get it.
With regard to whose surgery I would prefer first, if you had given me a choice 4 weeks ago, I would have said the breast surgery, but my legs are giving such pain that now I have changed my mind, besides none of the pain relief is working - I can’t take too much strong stuff as I need a clear mind for work and I suffer with that awful feeling of being sleepy all the time - not good for the patients under my care!!!
Would like to hear from anyone else who has had/ got this problem as well to see how they manage.
Hi
I was diagnosed in Sept 08 with lobular BC, 2/20 nodes 8/8 oestrogen pos,& 6/8 progesterone positive. Had lumpectomy, chemo,full lymph clearance and then radiotherapy. By Sept 09 I had developed trunckal lymphoedema on the affected side. How is is? Well I had a course of MLD which helped and now do SLD EVERY night before bed. Its b… boring but I am in no doubt that it helps. I also run twice a week ( never did before) and try and keep my weight down… all these things help. I would love to be in touch with someone who suffers the same as it can feel very lonely:-( Bethy x
CM coffee seems like a good idea and as soon as I get another car - ours was recently stolen, I will arrange a meet up. Really missing not seeing neddy!
Bethy, thanks for your comments, its a right b***er living with this swelling. I have had the problem with my leg for about a year and have gotten into a routine of daily massage and doing more walking, although it is a little difficult at the moment as I have severe pain in both of my legs, making walking extremely painful and certainly can’t walk up or down slopes, steps etc.
Please feel free to PM me if you would like to
Maggie, for surgery on your back they have you lying on your front, that doesn’t sound wise on a recently operated chest so I agree doing the back first sounds more sensible? Especially if it could help with the pain. Wishing you heaps of luck and yes, take the whole afternoon off for your massage appointments and go relax quietly. I can’t believe you are still working, with all those difficulties. You’re a hero!
Hey hey Maggie and Bethy, I have got lymphoedema in my arm ,trunk and breast so can sympathise with you there.
Ooooh I am usually a good girly and try and do my SLD before I go to sleep and when I wake up,it has all been reasonably well behaved but does go a bit mad now and then for no apparent reason and that is a total b*gger !
As for MLD,I am lucky enough to get roughly an hour a month massage ,yeah, topless massages on the NHS ,who would have though it ! But I do think that has helped keep my lymphoedema in check. I find that after it I am absolutely knackered ,and generally tend to need to pee a lot !
Good luck to you all,you know where we are if you need us.
Hi everyone
Thankyou for your welcoming posts…I also had MLD weekly for 6 months then reduced to monthly ( all on NHS) but then we moved house… I then had what was meant to be an intensive fortnight - which turned into just 4 sessions and that was it:-( I was told to come back in 12 months time or pay the same therapist privately!
Anyway for now sld everynight…b…boring but feel it does something.
Have a good weekend…in the rain
X
The Haven also do an exercise DVD which is specifically aimed at helping with lymphoedema. It only takes about 10 minutes to do and the person demonstrating explains how it should help.( and it’s free!)
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,
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.
