‘A Good Heart’ by Feargal Sharkey

As the lyrics go, ‘a good heart these days is hard to find’ but hopefully a good bowel is a bit easier to locate.  As of today, I am ‘active’ on the transplant list for a new bowel and abdominal wall.   

I feel very fortunate to have been approved for this pioneering surgery.  The transplant team at the Churchill Hospital in Oxford have been working with the colorectal surgeons from Basingstoke (led by my very own ‘Mr. Moran’) to do these transplants for a number of years. To date, they have done about 14 for pseudomyxoma patients.  It’s not at all straightforward, each one is very different including the number of organs transplanted, and we aren’t expecting a cure but, it could provide a new lease on life. We have been warned of the many risks and of the reality of living with a transplant.  We have been told that there is a chance that my quality of life may be worse rather than better.  However, my disease is progressing and my kidney (I only have one) and bladder are already being compromised by tumours as are my legs, so I am pleased to have this option. 

For those of you who are on social media, you will have seen that I was in hospital last week. The tumours in my abdomen have gone into overdrive of late compromising the function of my ‘waterworks’. Last week I had an operation to try to relieve the pain and constant discomfort that has become a part of my everyday life. If I’m off-camera on calls it is because I’m struggling to find a comfortable position to take them. It is difficult for me to sit upright, stand or walk for any length of time.  I’m hoping that it will calm down in time and that I will get used to this new normal as it’s currently quite limiting.  I’ve been housebound for the past couple of weeks other than my trips to the hospital.  I am going to try some short excursions this weekend and see how I get on.

In the meantime, I have my mobile phone fully charged and at my side and my hospital bag is packed.  When it happens, the surgery will take place at the Churchill Hospital in Oxford with both teams of surgeons, and I can expect to be in hospital for at least 6 weeks.  We have no idea how long it will take for the right organs to become available.  The average waiting time is 4 months, but it could be sooner, or it could take longer.

Until then, I am trying to carry on as usual as best I can.  I’m still working, albeit on reduced hours, and I’m trying to stay busy but well-rested.  We’ll keep you posted.

23 thoughts on “‘A Good Heart’ by Feargal Sharkey

  1. Brenda, thanks for the update. I do love that song. Your dog looks so chilled and happy to have you by its side. Praying that the wait is brief. Your medical team and plan sounds fantastic. Keep up the great attitude. You are an inspiration. Kate

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  2. Brenda your courage and strength always amazes me. I pray that you will get relief from this terrible pain that you are experiencing. Constant pain is never easy to endure. May God continue to hold you and your family up during this waiting period, He is our strength. Will continue to keep you in my prayers.

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  3. Dearest Brenda
    We cannot imagine how you fight so courageously – we are truly in awe.
    Our hearts are with you
    Brava!
    Love
    Leslie and Allan

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  4. Brenda, amid all this you send me flowers!!! Keep strong and I’m praying the wait is not long. Sending much love xxx

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  5. Wow- that’s big news about the transplant. Hope it happens sooner than later. I can’t imagine how you’re feeling but at least this gives hope. Relax as best you can with your wonderful pup and family. Thinking of you often and hoping for the best. Kerry Sent from my Galaxy

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  6. Brenda – your determination & courage are resolute as well as your ferocious work ethic. I too will pray for a short wait for those organs and a successful transplant. Please let me know if I can do anything to help – happy to do any running around, errands etc.

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  7. I keep thinking of you and sending lots of love that a match is found soon, we will get that glass of champagne in before long xxx

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  8. You are such an incredible human being Brenda. So brave and strong. And you look so cozy on that sofa with your gorgeous pooch. Sending love and hoping that your wait is super short. Sending lots of love
    Lisa

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  9. Wishing you comfort and a short wait for the transplant. Bonzo is definitely enjoying having you close by. So much 💜 J

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  10. So the prayers have started! Also lighting candles & saying Hail Marys! We’re praying for you to have your transplant soonest & the best recovery! With hugs and much love , Diana & Luis xx

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    1. Dearest Brenda
      You are truly inspirational. Lifting you up in my daily prayers that your transplant happens soon. Sending you lots of love, positive vibes and light Timmida

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  11. Dear Brenda,
    You are an amazing Young Lady. I am so very proud of you. You never back down. We can’t imagine what you will be going through. We wish you all the very best and hope that all will go well and not take Too long. You are a fighter, very determined and never give up when you want something. We will be beside you along with family and friends wishing you a speedy recovery and lots of prayers from everyone. Stay strong. Lots of love. Mum & Lee.

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  12. Hey Brenda. You are truly an inspiration in every sense of the word. Sending love and prayers and warm thoughts. Xx janet

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  13. This is a really positive step B, especially given your current discomfort. It also reminds us all about the importance of opting in to be a donor. Sending huge love to you all xxxx

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  14. I have said it many times before but your strength, resilience, and drive is absolutely unbelievable. I am so happy that you have been added to the list and keeping everything crossed for you over here.

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  15. Remarkable message Brenda. Truly inspirational, moving and impressive. We will all be rooting for you and thinking about you and the family
    Every success good heart!
    Patrick

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  16. Brenda, thank you for the update, you are always in our thoughts. I hope for you that the wait is short, and the pain in the meantime can be managed. You have been inspirational to so many before the diagnosis but the way in which you have tackled and smiled your way through this new challenge has astounded us all. Hopefully the Brenda smile will be back on camera soon – but in the meantime take care of yourself in whatever way you need. Jo xx

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  17. So thrilled you are now on the active list for the transplant and will be wishin’ and hopin’ and prayin’ for a donor for you. Stay strong and keep singing. Love Di x

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  18. Omg I’ve been thinking of you Brenda. Keeping fingers toes and eyes crossed a donor comes soon I’m in awe of your resilience and attitude So much love from us LnJ xx

    A message from The Joint Studio

    >

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  19. All the beautiful comments are testament to your remarkable bravery Brenda. We are all praying that you are able to have this transplant imminently & that it goes well. With Brendan Moran at the helm, you will have the dream team looking after you & I will be thinking of you & sending you positive vibes &, of course, masses of love. Nina xoxox

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  20. Dear Brenda you are so incredible and brave. We are praying you don’t have to wait too long for your transplant. In the meantime hope your discomfort is managed as best as you can.
    Much love Jo, Tim and Samuel xxx

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