Lymphoedema

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Hi, my partner has completed chemo and radio therapy  8 wrks ago. He seems to be suffering with a swollen neck (lyhoedema I think they call it). He's seen the dr yesterday and they said it was usual and he could get referred for 'treatment' but that could take a while. I'm assuming the treatment would be some sort of physio so I'm wondering if anyone has been through this and what they did... he's doing amazing apart from this as he can taste food , although very painful to eat and had a pint of Guinness too Slight smile

  • Hi I am like you partner.  Around 8 weeks post treatment and have lymphoedema.  I would highly recommend a referral to a specialist nurse.  My Dr told me just to stroke downwards on my neck to reduce it, but when I got my referral I found that this was just one third  of what really needed to happen.  No wonder it was not reducing!

    I managed to get a referral within 3 days despite being told a 6 week wait.

    The main tool is Self Lymphatic Drainage.  This is a self massage technique.  Realistically there is no medical intervention so the NHS can't do a lot for this debilitating issue.  But the massage is reported to work well.  I am early days with it so can't really say just yet.

    There a private practitioners that can teach him the massage technique and possibly also do it as a patient.  Search "British Lymphology Society" and they have a members directory.

    In the absence of seeing the nurse I can recommend a video on UTube that was recommended during my referral.  Just search "Lymphoedema Support Network" on UTube (I think Macmillan get funny about direct links hence the cryptic clues).  You will see the H&N video.  The book they recommend is also good.  It covers all types and forms of lymphedema , but is an interesting read.

    I hope he gets some relief as it is not pleasant.

    Peter
    See my profile for more details of my convoluted journey
  • He's seen the dr yesterday and they said it was usual and he could get referred for 'treatment' but that could take a while.

    My lymphodema was minor and I managed to sort it myself. If your partner’s isnt  too bad he might be able to as well. I have a post on what I did in my blog here todaymycoffeetasteslikechristmasincostarica.com/.../

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Thanks to everyone for the information  below. As we weren't sure how long a referral would be I told him surely someone on here would be able to help, you are such an amazing bunch and nothing seems too much trouble. Thank you again

  • you are such an amazing bunch and nothing seems too much trouble

    Wow! Thank you. I hope some of the info helps. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Thank you for asking this question.  I have it and it comes and goes. I found a fabulous YouTube on how to sort it and it works well. Look up Cancer Rehab PT . 

  • Thank you so much. This is brilliant