Groove is in the Heart

Dancing with a group of girlfriends to ‘Groove is in the Heart’ a week ago served to re-fill my resilience tanks just as they were getting quite low.  It’s been a challenging past few weeks as I have had one abscess after another open up along my wound (counting 4 in total now) due to an infection in my abdomen that was forcing its way out.  The result is that I have 4 open holes in my abdomen that need to be covered by wound bags or neo-natal stoma bags, they are all close to each other and close to my main stoma, which is a challenge in terms of fit and therefore I’m experiencing a lot of leakage which is messy, awkward and inconvenient to say the least.  The good news, according to my team at the Hampshire Clinic, is that the large deposit of infection/gel is completely independent of my digestive system and it’s not affecting me otherwise (no fever or illness) and therefore it’s not a worry.  However, the growing disease in my tummy means that the wounds are unlikely to heal properly on their own.  As a result, we travelled to Basingstoke yet again on Friday (we’ve been there a lot lately) and ‘Goz’ cut another hole lower down the scar line on my abdomen and inserted a drain which empties into a large bag strapped to my leg.  I won’t pretend that it was a fun procedure, although Karen, one of my brilliant nurses, kept me occupied joking and chatting throughout.  The hope is that this drain and gravity will encourage the fluid/gel to come out of one place and eventually I may have only one open wound to manage rather than five.  What pushed me over the edge was Goz telling me that my plans for wild swimming are out of the question due to infection risks (as are baths).  It’s not the end of the world, but I think it was the straw that broke the camel’s back.  I spent Friday and Saturday feeling tearful, tender, sore and sorry for myself and have shed quite a few tears.  Once again, thanks to my brilliant girlfriends who came round on Saturday to distract me and make me feel better, and my husband who somehow manages to make me still feel attractive in spite all of the bags on my tummy and drain strapped to my leg, I’m starting to get my mojo back.

So, once again, I am getting my head around a ‘new normal’.  I don’t leave the house without a full change of clothes, set of different bags, adhesives, sterile wipes, scissors, etc., and I am learning to cope with managing all of this in a public loo if necessary.  It’s not the end of the world – I’m still able to eat and drink normally and, with the right outfits, no one would know that I have all of these bags that need constant emptying and management.  It’s just frustrating, tiring and annoying.

However, it was all put into perspective just over a week ago when I got the sad news that one of my PMP Survivor friends had lost her battle with the disease.  She was such a bright light and wonderful supporter to all of us that it’s hard to imagine her not being there anymore.  She was far too young and had far too much more to do to leave this world, but in the time that she was here, she made a huge impact on so many people.  It is a reminder to me that while I can take a bit of time to feel sorry for myself with this latest development, get angry, be frustrated and sad, I then need to move on and make the most of my time and my health.  I know that there will be more bumps in the road ahead which I’ll navigate when I come to them.  In the meantime, I’m going to find more opportunities to dance to ‘Groove is in the Heart’ and lots of other great tunes.

14 thoughts on “Groove is in the Heart

  1. Brenda, Your resilience and gratefulness are inspiring. Those bumps in the road have given you such strength and resolve. Most of us couldn’t imagine wild swimming, you are amazing! xo Kate

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  2. Hey B – you are a star. Constantly finding the “upside” is something we all love about you, but finding it in these trying circumstances is just one more way in which you are our wonder woman. Sending you lots of love and big hugs. And see you in Sevenoaks soon?! XXX Tamara (and James & Hugo)

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  3. You are my very own super hero who exists not in movies and books but in real life (IRL)! Thank you for inspiring us with this indomitable spirit of yours and your ability to see the positives in the most challenging of situations.
    Prayers and affirmations of good health and longevity coming your way!

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  4. Your optimism & positivity are as boundless as they are astonishing. I read your updates & am saddened by the brutal challenges you face, but I take heart that you are a fighter, surrounded by the loving care of family & friends. Stay strong xx

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  5. Brenda, what a truly beautiful post. You give so much strength to everyone around you, with your extraordinary resilience and love for the simple things in life. It’s an important reminder for us all. Thank you darling X

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  6. Dearest Brenda, you are forever my inspiration and the thought of you dancing to ‘Groove is in the heart’ has put a big smile on my face. Before reading your post I was feeling – to mirror your words – tender and sore and very emotional since discovering this morning that another round of IVF has not worked. But your latest update and your incredibly moving words about our PMP Survivor friend (who, like you, made a huge impact on me) has reminded me of just how lucky I am to even be attempting IVF after surviving PMP. What you are navigating is huge, but to have discovered your mojo again and your determination to not back down fills me with awe and a new resilience for any challenges that come my way. Sending you the biggest love, hugs and thanks xxx

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  7. I read what are so unfairly experiencing, how truly tough it is, and am just so amazed by your resiliency – and so grateful you have such a tremendous support system to help you stay positive. One day at a time, tears or joy or both! A big big hug and so much love to you, Trend and your family xx

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  8. What amazing and uplifting honesty that inspires so many. So pleased there are people on hand for dancing. Essential. Take care and hope to meet up as and when you can x

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  9. Dearest Brenda. You are truly the bravest of the brave & you continue to be put through the most horrendous ordeals facing unimaginable medical challenges yet emerge each time more resolute than ever to press on with & indeed embrace life & all that accompanies your journey.

    You continue to inspire us all & like Romy, your words fill us with hope & the need to be so thankful for so much. May you both continue to dance; “Groove is in the heart”.
    Big hug & so much love x

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  10. Dearest Brenda. You are truly the bravest of the brave & you continue to be put through the most horrendous ordeals facing unimaginable medical challenges yet emerge each time more resolute than ever to press on with & indeed embrace life & all that accompanies your journey.

    You continue to inspire us all & like Romy, your words fill us with hope & the need to be so thankful for so much. May you both continue to dance; “Groove is in the heart”.
    Big hug & so much love x

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  11. You’re my hero…I look at you and aim for 10% of your mental toughness, and your incredible ability to be happy.

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  12. Dear Brenda, You are raising the bar all the time on “Be More Brenda”. You remind me to always look for joy. And if you ever create a Spotify playlist, I will be subscribing! Take care. x

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