Lymphoedema? Seriously? Life following diagnosis is just not that simple……

Recently many changes in my life have been underway. One major change which has impacted significantly on me had been the closure of the place where I have been swimming in the mornings. I knew this would be tough, but it has had even more impact than I had expected.

The facility closed to members on July 1 but I was soon on home leave. Furthermore, rainy season always disrupts swimming plans. Every night my ear is always keenly listening for the sound of rain through the sound of the fan. If the rain is heavy, the swim is postponed. Sometimes a full week of postponed swims passes in rainy season.

yangon monsoon

 

Aung Min Gaung River 1Now that the rains are starting to abate, I should be able to swim more often. I need to make plans.

But the gap this year has been too long. Very few swims in too many weeks.

Over the past weeks, I have also been experience increasing pain in my left arm. Twang Arm. I mentioned this to my Doctor here in Yangon and he told me exactly what I did NOT want to hear. What I had not even told myself.

Just a few weeks before the 6th anniversary of my mastectomy and the grand removal of all lymph nodes in my left arm I  developed lymphoedema. These are not my arms, but a stock image of what it looks like.

lymphoedema

Seriously?  Yes, seriously. Sad Face. Angry Face.  ARE-YOU-KIDDING-ME? face.

I am pretty certain that there is a direct relationship between the lack of swimming and the intrusion of this unwelcome bonus condition.

So I am on a quest. As the rains abate, I am seeking out another option. You have to factor in a house move to my recent changes, so I am also testing out new geography and facilities.  I have already checked out one place and had a test swim. This is not quite so easy to get to, but it is a possibility. There are two great pools, a 30 metre and an 33 metre pool. I do not think there are any kingfishers and it is a great deal busier but that is life.

I have always been convinced that the almost daily swims from very soon after surgery, really played a part in keeping lymphoedema at bay. Now I am going to see if I can reverse this and at the very least prevent it from getting worse. It is mild at the moment, and I must stop it from getting worse. Oh and does anyone have any idea where and how I can get a lymphoedema sleeve in Yangon?

lymphoedema sleeveAs October advances with its array of messages around Breast Cancer, I want to add my own message, which is “it just isn’t that simple“. I am happy to be living with NED and want to stay that way, but life after diagnosis just is not that simple. Lympoedema is just one more bonus in the post diagnosis life, as I have discussed before. Thanks but no thanks cancer, indeed.  These bonuses include:

  • A digestive tract which remains sensitive following the ghastly gastric effects of chemo.
  • I have difficulties with memory too, my personal memory card is none too reliable and has particular dislike for. This is linked to  “chemobrain”- a level of cognitive impairment “thanks” to chemotherapy which is now more recognised and understood to be very real.
  • The pulmonary embolism which tried to get rid of me in 2012, and for which I still have to take blood thinners and undergo regular checks.
  • The failed thyroid, which again needs daily medication.
  • Peripheral neuropathy in toes and fingers. Not severe but enough to affect mobility and make me walk clumsily to make others notice. Enough to make me trip and fall too regularly.
  • Brittle and constantly breaking nails
  • Highly sensitive skin – which cannot tolerate sticking plaster or bandaids (depending on the part of the world you come from 😉 ), and which can sense the presence of a stray hair through several layers of clothing. This includes the extremely sensitive soles of my feet
  • Excruciating night time, and other time cramps.
  • Last and in no way least, is Twang Arm which remains seriously corded and which is now clearly laughing up its lymphoedema sleeve.

Again, I need to respond by stepping up my game and squaring up, no matter how exhausting this is.

I am not afraid to shout out that I HATE cancer, I HATE the way it continues to sneak in surprises and knock you when you are still getting getting back to your feet.

Life after a diagnosis of breast (or any cancer) just is not that simple.

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21 thoughts on “Lymphoedema? Seriously? Life following diagnosis is just not that simple……

  1. You’re right, it ain’t easy… but I wish you more peace and pain-less times in the days to come. Wish I knew where you could get a sleeve – in Yangon; but since I don’t, you might want to order one to be shipped to you, from somewhere like Singapore or Bangkok (or ask if an expat can bring one back for you). Good luck and blessings for better health and peace of mind…

  2. Hi Philippa , about the sleeves have you checked with local hosp my occupational health dept regularly makes mine to my personal measurements Maybe I told you this before but i just can t remember ! Chemobrain strikes again !
    Lymphoedema is a real pain isnt it?

  3. Hi P, have you tried any of the Lebed Method exercises? They are designed to help with lymphoedema and range of movement. I do the lymphatic opening sequence regularly and before any strenuous arm activity (curling, swimming …). Originally I went to classes at the London Haven and then trained as an instructor but didn’t keep up my registration. E xx

  4. Hi Philippa, I feel for you. Someone close to me was gutted to be faced with lymphoedema – it took her a while to come to terms with it – which she has now. I think it’s like coming to terms with any disability – there’s a stage of anger, disbelief – (me? why me? how can this happen?) misery (it’s unfair – haven’t I put up with enough already?) – but in the end that’s where you are in life, that’s what your body now is dealing with it. You live through your body, and the only choice you have is how you react. What has she done to adjust? She wears her stocking unembarrassedly now (she hated it at first – but it’s no worse than losing your hair). She got rid of a car and cycles everywhere (swimming is great but I think any whole body exercise does it. I have a serious back issue and I have discovered that walking 1st thing in the morning for an hour keeps it manageable.) She took a lot of lymphodoema-specific advice (which I’m sure you have) and used to do the very gentle massage each evening – but I don’t know if she still does. She was at the same time having to face up to difficult changes in her personal life – nothing to do with her lymphodeoma but once she was in a better place with them she could tolerate all stresses better. I’m sure you will have been doing that too. In the end all we can do about the increasing disabilities that are likely to come as we get older is to get on with what we still can do. Well done for sharing what you’re dealing with. All the best

    • Thank you so much for such comprehensive insights, Marion – veyr helpful. I am probably in a similar space at the moment. I have had to ditch my bicycle for now unfortunately as an old spinal injury was being aggravated by the pedalling – I was gutted as I loved my morning cycles, but the pain has reduces so much since stopping that I can see that it was the main cause of the pain. I love walking too and now that rainy season is abating will be able to walk more.Yes, it is so much about adjusting and finding what works and what we can do. My retreat in the Laos hills is a space where I always feel replenished, inspired and well. I wish I could spend much more time there….. Thanks and hugs to you P 🙂

  5. Hi Philippa, this post really struck a chord with me, especially the comments about lymphoedema, ongoing side effects and most definitely “Life after a diagnosis of breast (or any cancer) just is not that simple.” That one sentence really does sum things up perfectly and no one who has not walked the same path that we have can understand the truth of those words.

    I am so sorry to hear about the LD, a rubbish thing to have to cope with on top of everything else! I have mild to moderate LD myself and it’s been a difficult couple of years adjusting to the challenges having it brings. Mine is now stabilised but it’s not something one can ignore, even on the ‘good’ days as you have to be careful about so many things. I heartily recommend continuing the swimming if you are able as I am sure that this has helped me a lot and was recommended by my LD nurse.

    As for sleeves, I don’t know if you are able to order it where you are but I wear a sleeve called Harmony, made by a company called Mediven. It’s wonderfully comfortable compared with the horrible thing I was first issued with – easy to put on and remove, with a more breathable fabric and patches of softer material at the elbow to reduce the risk of sores developing where the fabric creases.

    Thinking of you, as always! x

    • I just saw your very recent post too, and yes, we are saying very similar things. Gratitude mingled with disbelief… Your words “Life is not about regrets, no matter how big those regrets are, it’s about living, being able not only to dream of a future but to get out there and live it!” express that beautifully.

      Thank you so much for the suggestions too – I will check out Mediven and see if I can get it delivered here.

      Wishing you well, and continued strength and spirit.
      P 🙂 xx

  6. I’m so sorry this is happening to you. I have cording and lymphedema, which I write about in my blog often. It’s something I’m having a hard time coming to terms with. The cording is super stubborn and won’t go away. I’m looking into other options aside from physical therapy to help with it.

    As for sleeves, I believe that if you can measure yourself (and you can request help on their website) you can get a sleeve from lymphedivas.com. I would check them out and even write to them about your location and the challenges you are having finding a sleeve. They might be able to help you get a proper measurement.

    Again, so sorry this is happening. It sucks.

    • Thank you so much – yes, that cording is so so stubborn and debilitating. I would love to hear the other approaches you are trying with it. I will also look up lymphedivas – sounds promising too.
      Sorry you are dealing with this too. Gah!

  7. Dear Philippa,

    I am so sorry for what you are going through with LD. Another “loss” to grieve, and what must feel like another mountain to climb and conquer. Please know I am thinking of you, and BELIEVING that you will find your path to manage this new challenge. Much love, Karen OXO

    • Karen, your words are always so wise and encouraging. Yes, it is a pain (in every sense) but it is up to me to tackle it. At least this is in my hands (or in Twang Arm’s 😉 )

      Sending you much love too and I hope you are doing well xoxox

  8. Dear Philippa,
    I hope your new pool works for you, in every way. Trying to visualise a chlorinated kingfisher too… All strength to you as ever. Lots of love from the islanders, Sx

    • Oh a chlorinated kingfisher! I did see a couple of chlorinated frogs in the other pool, and managed to rescue one of them. I heard a kingfisher this morning, but no idea where it was…..

      I envy your island life and will one day knock on your door for a cup of tea 🙂 Love to you both x

  9. I thought I was the only one with a range of post treatment consequences including various gut problems, skin and hair problems, joint problems and mental aberrations. I’m sad to hear I’m not alone and see you writing about the need to square up to these unwelcome issues. Like you I’m glad to be alive and NED but I’m not glad about the rest of it. I hope you find a new swimming retreat soon Philippa and I hope that keeps the lymphoedema at bay xoxox

    • You are so not alone, sadly 😦 I had forgotten about the gut problems, not easy in a part of the world where spicy food is the norm 😉 And I had forgotten about the memory issues too (he he he 😉 )
      I am very glad you too are NED and wish you strength in the face of these various post treatment extras. Hugs to you xox

  10. Any luck finding a place to swim yet? I’m so sorry that the lymphedema returned. Unfortunately, it’s something that can show up at any time for any of us. I had cording and the beginnings of lymphedema. Thankfully, the LD hasn’t returned, but the cording rears up every now and again. Took me a few years of persistent arm exercises and stretching to get back my normal range of motion. Years. And me a physical therapist. And I still have to stay on top of it. Is there a physiotherapist/specialist in your area that could help?

    I hope you can beat it back into submission, P.
    xoxo, Kathi

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