This past week has been a tough one. I had a CT scan and blood tests on Monday and then had to wait until Friday to have my follow-up consultation with my oncologist. I have also been waiting for the results of a genomic sequencing that was being done on my original tumour to see if we could find any mutation to target. Knowing that I am experiencing symptoms of the disease now and that it is clearly progressing, I have been more anxious this week than normal. I thought I was keeping it all together until I broke down into tears in the office this week over a silly misunderstanding with a colleague. I was mortified and had to explain that it was due to all that was on my mind and not the work situation – not one of my Wonder Woman days!
Time rolled on and I had my follow-up appointment with my oncologist yesterday and Trend and I left with a small glimmer of hope. My oncologist’s take on my latest scan was there is clear progression of the disease in various places, particularly around my kidneys but that the rest of the diseased areas are largely stable. My tumour markers from my blood tests were also stable. The genomic sequence that they did on my tumour was largely inconclusive so there are no gene mutations that they can target with chemo or immunotherapy at the moment. However, the one gene mutation that they could identify is the KRAS gene and it’s one that’s receiving a lot of attention at the moment as I believe it is common to many cancers. My oncologist thinks that there could be treatments coming out in the next 6 to 18 months that could be relevant for me.
We also discussed the fluid that is being produced in my abdomen (which is how my disease manifests itself) – without going into too much detail, it’s currently coming out of me at the rate of 100ml per day. I have to think that it’s a good thing that it’s coming out rather than building up as it did last year prior to my last op when my tummy reached full space-hopper proportions. However, it does present some real discomfort issues for me in terms of feeling like I need to go to the loo all the time (and having to always be close to one) as well as having to get up several times through the night. He knows of an injection used in other cancers to inhibit secretions and he has seen one case study of it being used in a patient with PMP with some success. He is going to try to get approval to try it on me with monthly injections.
We didn’t discuss my new hernia under my stoma – I need to deal with that separately although I know that my surgeon is not keen to open me up again. Luckily, it’s not causing any major problems right now. I can exercise and jog with a hernia band on to give me support.
So, although the disease is clearly progressing, I didn’t get the sense that I am in any immediate danger, and there is a small grain of hope in the development of the KRAS mutation treatments in the coming years. We agreed that his job is to work with my surgeon to keep me alive long enough for the treatment to be available for me.
So I have a plan. And for now, that’s enough.
You are extraordinary Brenda. Wonderful wonderful you. And very positive these strands of good news. You look ridiculously glamorous and gorgeous in your London High Street Christmas shopping photo. 😘 Huge hugs and love, India
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Thinking of you and you are in my prayers. You have such a good lookout on life. May God continue to give you strength and encourage you as you face each day. Tears are good for you and not a sign of weakness. Stay strong and stay healthy. Merry Christmas 🎄 to you and your family. Hugs, Gerry
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As ever Brenda you are an inspiration. We are all rooting for you. Enjoy every day and feel the power of our love
Best
Patrick
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Sounds to me like your work issue was a total Wonder Woman day. It’s easy to be tough but so much harder to admit to vulnerability in a professional environment. So glad that glimmer of joy is there. Keep dancing!!
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I never fail to be amazed & impressed with your courage and optimism. There is lots of evidence that hope gets people through the impossible. Hang on in there & stay hopeful xx
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Keep calm, and carry on x
Have a restful and peaceful Christmas-with much love xxxx
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What a moving post….sounds like medical advances could be just around the corner for you. Cannot imagine how exhausted you must all be. Your positivity, optimism shine through this post and are an inspiration to us all. Stay string, sending lots of love xx
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That is really good news Brenda, very hopeful, and you have a plan to focus on.
I laughed out loud at “space-hopper proportions “! 😆
I hope you enjoy a peaceful & restful holiday with the kids. Big hugs to you and give my best to Trend. 🌲 🔥
Love Louise &Graeme
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Hey cello birthday gal – thank you for yet another inspiring and courageous update. You are a permanent ‘wonder’ as far as I’m concerned as you have this amazing ability to see the positive in everything you’re experiencing my friend. Festive blessings and huge hugs Brenda xxx
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Hey fellow birthday gal – thank you for yet another inspiring and courageous update. You are a permanent ‘wonder’ as far as I’m concerned as you have this amazing ability to see the positive in everything you’re experiencing my friend. Festive blessings and huge hugs Brenda xxx
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Every day is Wonder woman day for you Brenda. Hopefully the New Year will bring good medical news of new developments. Sounds like your medical care is stellar as always and most importantly the cheerleader by your side is holding your hand and being so supportive, yeah Trend. Try and have a beautiful Christmas with the fam and take it one day at a time. (and read some good books!) xxxx
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Huge hugs Brenda
Stay Strong
Xxx
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This makes difficult yet inspirational reading Brenda. Whilst I can’t imagine how this must feel, you continue to inspire us all with your positivity and strength. We can’t be with you in person but we are with you, rooting for you every inch of the way. You are going to beat this and I love the innovative thinking of those surrounding you. Sending you all masses of love, Xxxxxxxx
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Lot’s of love, optimism and positive energy.
Love SoMan
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You remain simply inspirational in a hugely complex situation. Wishing you strength and love, one simple grain at a time xxx
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Brenda, you are such a star- and don’t ever think you aren’t Wonder Woman! Everyone who knows you, knows that you are- no matter what goes on in your day. Thinking of you always and wishing you the best Christmas! India is right- you are a glam Wonder Woman too! Lots of love Tamara
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Your narrative of hope is so important at a time for you that is impossible to imagine – and at a troubling time for the world. Your obvious gratitude for the superb medical care and advice you are receiving is also very apparent. Warmest wishes to each of you for Christmas and hoping we can fit a walk in your busy schedule – perhaps up ‘ere with a view, in the new year.
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Love the huge smile on your face. You are such an inspiration to all who know you!. Today is Santa Lucia day in Sweden. This link will take you to the most beautiful and peaceful music. love, xo Kate
https://www.svtplay.se/video/29267198/luciamorgon-fran-jukkasjarvi
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This sounds such a positive way forward. Sending you loads of love Brenda xx
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You are such an inspiration – so positive and determined (and besides, everybody is allowed the odd wobble!). Take care, and regards to you all.
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Dear Brenda, you are a complete Wonder Woman and your attitude when you are coping with so much is just incredible. I do hope that you manage to have a wonderful time over the festive period, and that 2021 is a more smooth year for you (and a great deal more sociable – it would be great to see you again sometime) xx
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Hi Bren, would you believe that Mummy is at a loss for words. Your blog was very interesting. You did a great job with all of the details. It is nice for everyone to know what is going on and how you are progressing. I am so far away from you and don’t always get all the details as you are so busy. I admire your strength to push onward and to live a normal life in spite of all of the bumps along the way. You truly are my ROLE MODEL and I am SO PROUD of you. I don’t know when you find time to look for options in medications but you are so organized and determined and I have GREAT FAITH in you. I feel sure that you will find something soon that will help. All your Family and Friends are here for you, Trend, Teddy and India. I am always thinking of you and here for you.
I will miss all of you at Christmas and we will face time. Enjoy! Lots of Love Mummy xx
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