Sometimes life does not go as planned!!

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I am sure that those of you who have followed my blog over the past couple of years will wonder why I have not done an update of my own progress. March 2015 was the two-year anniversary of my Lymph node transfer and I am very happy with the results, not a cure at this stage but a huge improvement. There will be more on this later…

The reason for my lack of posting is I have been very ill with another late stage effect of radiation and cancer treatment. I started to experience weakness in my legs, I had falls, my legs felt numb combined with pins and needles,(peripheral neuropathy) gradually it became harder to get up stairs and to walk in general. December 2013 was my first appointment with a neurologist…. 2014 was a very difficult year, full of doctors appointments many, many tests, scans, a biopsy, neurological tests etc. I was seen by two neurologists, an immunologist and also visited a Clinic that specialized in Functional medicine.( Combining alternative medicine and conventional medicine).By the end Of 2014 I was given the diagnosis of Radiation Induced Lumbar Plexopathy, a very, very rare and untreatable side effect of radiation that leads to paralysis of the legs due to damage to the nerves in the Pelvis. http://emedicine.medscape.com/article/316604-overview#a0101 Women who have had Breast cancer treatment can get Radiation induced Bracheal Plexopathy which leads to weakness or inability to use the arms and hands.

The first three months if this year was spent in hospital, doing intensive neurological rehabilitation, in the hope of regaining the use of my legs. Sadly this did not happen. While in hospital I learnt to use a wheelchair, and everything else I would need to manage with paralysed legs. We have had to sell our house and we will be moving into a home that is wheelchair friendly. Thank goodness for the help of those physios and occupational therapists who got my life back on track while I was in hospital. You can imagine there has been many tears coming to terms with this and I never imagined I could have something healthwise that was worse than the Lymphoedema!!!

It is very hard for me to write this, only 0.16% in 1000 of those who have had pelvic radiation  get this side effect. It can happen from 0-30 years after the radiation. It is difficult to get information and to connect with others but via the internet and the American Cancer Society I have connected with a couple of ladies. This is certainly not something they tell you about when you are having Radiation!!! No I am not starting a new blog at this stage, or trying to build awareness of this side effect!!! All my energy goes to getting through each day and learning to live with my new “normal”.

However even with all this the Lymphoedema journey still continues with I feel good results. Due to my illness I had to withdraw from the research program at Macquarie University Hospital Sydney as I could not have the MRI or Lymphoscintigram done. The measurements would also all be effected due to the muscle wasting of the legs, due to lack of movement. Since the start of the year I have not worn compression stockings, they are difficult to get on and uncomfortable on the sensitive nerves in my legs. Surprisingly my legs have stayed really good without compression. They are soft all the time, a bit of swelling in the ankles goes down over night and I have had no cellulitus since the surgery in March 2013… My lower leg is the same size as my good leg and the thigh a little bigger but does not get worse. Maybe a transfer to the groin as well as the one to the knee would have helped this but there will be no more surgery for me now!!!!

One of the things that is important for Lymphoedema is movement so on the recommendation of the rehabilitation doctor in the hospital I got a MotoMed machine http://abilityinmotion.com.au/products/movement-therapy/motomed/ This has been the best thing I could have done for the Lymphoedema and for my paralysed legs as it keeps the muscles moving and keeps the circulation going. I am unable to peddle, so the motor kicks in and I can do 25km of passive exercise plus I usually do 5km of active exercise, with my arms, for the upper body. This and deep breathing every day helps to keep my Lymphoedema in order, plus I elevate the end of my bed at night to help any swelling. Even the ankle on my good leg swells a bit sitting in a wheelchair all day, so there is double reason to look after my circulation.

I intend to keep this blog going and to share people’s stories and their progress. It has become quite a useful resource for those going ahead with surgery for Lymphoedema. Over the past two years I have noticed an increase in those having LNT and Lymphatic Bypass surgery, LVA, plus Lymph sparing liposuction to help their Lymphoedema, in both arms and legs. I think we are yet to find a 100% cure but there appears to be improvement, how big the improvement depends on the condition of the limb pre surgery and the care given post surgery. It can also take a number if years to see the ultimate response to surgery. Please keep sending me you stories and adding your comments to the posts, it is this sharing of knowledge that helps. Of course non of this replaces the advice of the surgeons who are looking after you, I am also glad to see that some of them are collect data on their results.. This is so important for the future…

Thank you to all of you who have supported me in the past year and who were aware of my problems, you have made it all a little easier to get through. Everyday for me is now a new experience……

If you would like to contact me please send an email to helenbrd@bigpond.net.au

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33 thoughts on “Sometimes life does not go as planned!!

  1. You are an amazing woman H and have created a fantastic place here for many others. You are also very inspirational and your journey has no doubt given courage and support to many others. We love you, admire you and are always here for you.

      • You are amazing. How incredible that you are still able to maintain this blog for us, while you struggle with your own medical problems. I’m truly sorry you have encountered this problem. You are always here to support us, wish there was something we could do to support you. 🙏

        • I enjoy the interaction with people and it takes the focus away from my own problems… We all still have LE and having surgery and learning how to maintain our limbs… Social media has allowed me to stay in touch with the world when there are many things i can no longer do… This blog has a life of its own and i will continue to nurture it xxx

  2. hi Helen, I am about to start the journey with researching LNT to see if I am eligible after putting up with a “fat” arm for the last five years, so reading your blog has inspired me, I wish you well:), warm regards, Jennifer

  3. Oh Helen, I’m so sad to hear your news, especially after all your progress. But I know you will find a way to keep your spirits up and keep the movement happening. All my love and thoughts are with you. Lisa x

    • Thank you Lisa.. It was a gradual deterioration but I knew I had a serious problem …. It has not been easy but it was time to let people know what was happening… It helps though that the LNT has improved my leg or that would be much harder to deal with now… Helen xxxx

  4. Hey Helen. It is sad to read your story because I hoped your situation would improve but apparently it did not. However I know you are such a strong person, you will overcome this problem. I remember a quote (for sure it will not be completely the quote because I can’t remember these things🙂 ) but it was something like this : it’s not your problems that determine who you are but your flexibility to overcome them’. Something like this hehe but it is true, not our disease(s) makes the person who we are but the strength to stay flexible to deal with them. The past has proven that you manage every time so I am sure you will overcome this time too.
    Anyway to be honest I am happy to read a blogpost again🙂 I have missed you ! Only I had hoped for better news…
    Stay strong! XXX

    • I have enjoyed writing again… For a while I just had nothing to say I was just grieving the loss of my health… But now I have to move on and make the best of things…,yes that quote is a good one… I also remember the one … Never let your illness define you…, thanks for all your support over the last couple of years xxxx

  5. Dear Helen, I’m so sorry you have to deal with all of this. You are a strong woman and I am inspired by you. Please know you have all of us here for you always. I wish I could come through the computer right now and give you a hug❤ Keep posting and stay strong!! Sending positive thoughts and prayers your way!!!
    xoxo Maureen

  6. Helen, querida. Você é uma mulher exemplar, sempre ajudando a divulgar novidades sobre tratamentos pra nossa doença. Também gostaria de te dar um abraço bem apertado pessoalmente. Mas, de longe te mando muitas vibrações positivas, para que nunca desanime, siga em frente como tiver de ser…

  7. Hi Helen,

    You are very strong person. I hope you will be able to get well again very soon. You have help me a lot through your blog. Thanks. God bless.

    • Glad to hear from you Thomas… Hoe are you going now post surgery.. I hope you have lots if patience waiting to see some results, but it does take time .. So glad that this blog helped you .. Take care Helen

  8. I’m so sorry you have been dealt this. What an awful, unfair blow. I hope things start to get easier as you adapt to the wheelchair. Thank you for blogging about this and for reaching out to others. Thinking of you in great admiration for sharing your story with such strength and honesty.
    Kate x

  9. Helen, I’ve been a cancer patient and I’m also a physical therapist. You’ve provided such a great service to us all by writing about your experience with lymph node transplantation. Thank you for that. But I also want to say that I hate hearing this news about the radiation-induced lumbar plexopathy. Radiation treatment is a dangerous thing, and its potential side effects and long-term damage certainly got soft-pedalled to me, as they are to many cancer patients. As a PT, though, I hope you rock that MotoMed and I hope your wheelchair is neon purple — well, that is, if you like purple.😉 I wish you good rehab mojo forever. Kathi

    • Thank you for the support… There Were three of us in hospital and we all had leg paralysis from radiation and one from chemo but as you say non of us were told about this possibility… It happens more than people realise and is devastating in its effect… The American Cancer society has a forum which includes late stage side effects of cancer treatment… It is an eye opener … Helen x

  10. Hi Helen, Thank you for the update. I often think of you and wonder how you are, so I appreciate you sharing what you’ve been dealing with. Hate hearing about yet another side effect from treatment. I’m sorry. Sometimes we hear about how ‘easy’ radiation is and that is total BS, as you know far too well. The risks are too often downplayed. Good luck with gaining back your strength and everything else too. You are amazing. We love you, Helen.

    • Thanks Nancy… I recall a friend telling me when I was to have radiation that I was lucky!!!! Lucky not to have chemo…. Yes the effects are very down played… Thank you for your support xx

  11. Your generosity of spirit is so abundant Helen, especially when you have had your own trials to contend with. Cancer and its treatment is far from straightforward and there are many challenges post treatment. I am sorry you have encountered this unwanted and truly unwarranted side effect.

    • Thank you for your support… We never know what is ahead of us post cancer… I feared the return of cancer but never thought about side effects of treatment as they were never spoken about .. To say the least this is a challenge but i will make the best of the situation … Xx

  12. Hi Helen, I was so sad to read your post. Like others have said you have provided such an amazing resource for people to find information about lymphodema. Not only that you have shared my blog which has got others to read it and I am so grateful for that. Sending you my best wishes!

  13. Hi Helen. Wow you really are going through a lot. Radiation has also caused me many issues, completely different from yours, but interesting that we both have had huge complications as a result. Mine was radiated after a lumpectomy and then they found more cancer in the breast so when I started reconstruction it was a huge problem after the required mastectomy. I have had about 9 breast surgeries total, ,but at this point I have to thank my lucky stars that this is mostly a cosmetic problem, I tolerate surgery very well, although all of the scar tissue encapsulation is no picnic and painful. I think of you often and again even though we have been going through different stages I am happy to see you are blogging again as I am too. Sending you prayers of love and light…xoxo

    • Thanks Susan .. I just could not write for a while as it was all to raw and unbelievable. These side effects of cancer treatment are hardly mentioned and very difficult to deal with as they are so obscure. Through the American Cancer Society forum on late stage effects of cancer treatment I have been able to contact a couple of others.. One lady has been very helpful and has given me hope that over time I will get my life in order again!!! I Wish you well and find comfort in connecting with others even though our issues are different they are still on going effects.. Glad to see you writing again too… Helen xx

  14. Oh, Helen, I am so, so sorry to hear about your paralysis. In the whirlwind of moving back to Chicago this past year, I haven’t been very good about writing myself, or diligently following my blogging friends. However, I had noticed that I seemed to be missing personal status updates from you on your blog and was concerned. Now I know why. I have admired your strength and insight regarding lymphedema the past couple of years and know that this strength is moving you forward now. Life sure doesn’t go as planned, does it? Sending you hugs and lots of positivity. xoxoxo

    • Thank you so much… I just could not write before as I could not believe that something else was going badly wrong!!! Yes for sure we never know what lies ahead of us and it is way beyond my understanding how this has happened however hard I have tried to look after myself… Thank you for your support and just being there for me xxxx

  15. Dear Helen, I am new to your blog and have been reading through entries over the past several years. I was devastated to read your latest few entries, describing your latest challenges. You are an amazing woman who is an inspiration to all your readers for your passion for sharing and helping, your optimism in the face of what seem to be insuperable difficulties, and your indomitable spirit. May you have the strength to carry on. You set a marvelous example of what “not giving up” means. Much love, Ida

  16. Pingback: My New Blog | My Lymph Node Transplant

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