Going for my mri tomorrow.......after my new diagnosis of lymphodema

Hi ladies.........hope you are all continuing to be up beat and keeping well. Just feeling anxious about going tomorrow and I am being silly really as the surgeon said it was just precautionary and he isn't worried about me. But you all know what its like waiting for the results! It was such a blow getting lymphedema in my leg, I now have the support stocking to wear every day, its thick and horrible and makes me feel so old. Cant wear a skirt or dress, all my trousers cling to it...........hate it!! In this day and age when they can fix your heart, even build you a new face etc why is there no cure for lymphedema, its just plumbing! Grrrrrrr, so upset about it after going through all the cancer treatment. Also got an appointment at the lymph clinic on Thurs morn, lovely week. Last week I had a private massage to help drain the fluid, she was recommended by my surgeon. I weighed myself the next day and I was 2kgs lighter, that effect lasted 4 days then it all went back on. Its very expensive £48 a session but atm she is charging me £30 as I just cannot afford it living on pensions and still supporting 2 out of 3 of my 19 yr old triplets. There is very little help on the NHS just the prescription stocking. Right, lets get tomorrow over with, I am trying to tell myself I am lucky being given an extra scan for reassurance. Love to you all. x

7 Replies

  • can't help smiling but also feeling very sympathetic to you having to pay for treatment whilst supporting your trilplets...or at least two of them(!)

    I was very old when I had mine and struggled when they were small and all wanting/needing things at the same time. We still struggle a bit and I am so sympathetic when you wonder if you should spend money on yourself....of course you should and I am sure if they think about it....bet you protect them from some of the realities.....they want you to too. So go girl and hope your scan results are good! Love Chris x

  • Hi how old are your children, were they ivf? Sorry if I am being nosey, its just nice to find someone I have something in common with apart from OC! x

  • Oh the dreaded Lymphadoema stockings. I personally think that is what Nora Batty wore. At least mine look like that and they have a habit of falling down. I now wear garters from elastic stockings with them to add to the sexy effect. Did find a foam wedge between the mattress and bed at the disability shop. That has been the most help and means some days I don't wear the stockings (shhh don't tell the Lymphadoema clinic). I don't find mine cling to my trousers though. I am sure there are tricks you can do to stop that.

    Hope the scan goes well.

  • Hi nice to "meet" you! Maybe its because they are cotton, they said better for the summer, so horrible aren't they? I have two blocks of wood under the end of my bed and that is definitely helping. Did ours develop after surgery? x

  • I am coming to the end of my remission and held together by steroids 🙃 It was 2 years after the surgery. I just think that the nasties are waking up again. They took me off steroids and I fell apart! Back on them every 3 days and that keeps me ticking over. Hey every day is a bonus isn't it! Keep fighting the good fight 👍

  • Well not a pleasant experience as usual, young nurse couldn't get the cannula in and I am not good at needles. Eventually after tapping my arm to death she gave in and called "Martin" to have a go ..........success! Then 45 mins in the scanner where I felt I was being baked! Now got to wait approx. 3 weeks for the result. Next appointment 9am in the morning for the lymphoedema clinic.........such fun........... xx

  • Hi love,

    Sounds like you are going through the ringer at the moment.

    I don't have any experience of lymphodema,but do with kids,we don't support them financially,but time and effort,we do airport runs,jobs,look after grandkids and more.....

    It sometimes would be nice if we were looked after,just occasionally!

    Hope you and Hubbie are bearing up,

    Love and best wishes,

    Carole xxx

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