I’ll Find My Way Home

Hillary and I finally came home today after almost 6 weeks in the hospital.  It’s been a long haul but the wonderful team of doctors and nurses at Basingstoke have done a good job of getting me back on my feet and building up my strength.  I put on 10 kilos during my stay, thanks to intravenous nutrition (TPN).  Tomorrow I will start having TPN at home.  A nurse will come to train Trend and me so that we are able to do it ourselves.  It means that each evening, I will have a 12-hour drip of all of the calories and nutrition that I need as I am not really able to eat anymore.  My tummy has got to a point of being very big and uncomfortable which is normal for this disease.

As a result, I will be back at the Hampshire Clinic in two weeks’ time for another operation major like the previous three.  Mr Moran will take out as many of the tumours as he can as well as all of the gel and part of my bowel.  However, we are still waiting for the transplant, so if organs come up in the meantime, I will go straight to the transplant surgery.  If not, this will give me some relief while I continue to wait.  I am a difficult match for organs, so it will take some time.

I can’t really describe how I feel about the upcoming surgery.  As I know what to expect, part of me is really dreading it.   However, as I am very uncomfortable and it’s getting worse by the day, the other part of me is looking forward to the relief of having the tumours and gel taken out.  It will be complicated, particularly as it’s my 4th and there will be a lot of scar tissue, but we really don’t have much choice.  I’m lucky that I have such a good surgeon who will do the best he can do.

In the meantime, thank you for all of your kind messages and good wishes.  I’m sorry if I don’t reply to all of them or if I’m not always up to a chat.  I have good days and bad days and I have to just go with the flow.

28 thoughts on “I’ll Find My Way Home

  1. Still smiling Brenda! It must be so wonderful to be home; enjoy that and try not to think about the upcoming surgery. Thinking of you and hoping beyond anything that the organs you need become available for transplant. Sending much love xxx

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  2. Dear Brenda – so pleased to hear you’re on your way home. I know that Mr Moran will do an amazing job and Although it must be tough to think about another operation- you know you’re strong and will come thru this smiling. Thinking of you and family – much love, Diana & Luis xx

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  3. Sending much love and prayers to you and your family. Remember that with God all things are possible. You are such an inspiration Brenda, hang in there.

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  4. So glad you have a chance to spend some time at home, and are feeling stronger. Sending love for the next operation, and hoping to see the big Brenda smile soon Jo x

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  5. Hang in there, my friend! You’ve got a great team of doctors and family behind you and friends sharing love and support.
    You are truly an inspiration to all of us.
    Sending love and a hug,
    For you, Trend….. and Hilary!
    🥰🥰😎

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  6. Dearest friend and Wonder Woman , I can t only be there with you
    In my heart for you .Know that many people around me some know you through the amazing work you have done some don’t but when reading your blog and meeting you they are so inspired by the warrior you have been for so many now and through this evil disease ,it is time to pull that strength only for you in the good and bad days ahead . Have faith on that strength Brenda and it will bring home . Send you all the positive energy that you can get out of me . Xxxxx Nadine

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  7. It must be lovely to be home. Wishing you lots of luck for the next big op. Sending lots of love and positive vibes xx Lisa

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  8. So poignant reading this on Rare Disease Day Brenda . Knowing you are in Brendan and his dream-team’s capable, caring hands fills me with confidence and hope. Just enjoy being home & may you be made comfortable soon. All love xoxox

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  9. So good to see the photo of you in the car and on your way home. I hope by now you are on a very comfy sofa with Bonzo keeping your feet warm. I can hardly imagine how hard it is to stay positive, when you are all too familiar with the tough operation that lays ahead. You know you can do it, because you’ve done it before and we all have faith in your resolute determination to fight this horrible disease. Take Care. Love Di x

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  10. Wonderful to see you (and Hilary) in the photo. Great that you have the opportunity to get ready for the op by being at home. Sending all my good thoughts for the weeks ahead

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  11. Dear Brenda, you are such an amazing inspiration and I’m in awe of your courage and strength. We are praying for a successful operation and for an organ match soon. Keep the faith. Love and many blessings, Dorthe and Truett 🙏❤️🙏

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  12. Forget the Avengers … You, Hilary, and Bonzo are some squad that could take on anything together. I am so happy to see you out and about. I don’t pray very often but will pray for you and have faith that the operation will be successful and much more tolerable than the previous ones.

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