Costly and subdued.

The promised update.

The latest round of checks is behind me and I am breathing out.  That means one thing – that the important tests were mostly fine, and that I can breathe out slowly again.

I have been surrounded by support and care, and cannot express how much I value that.  There is never a time with these checks that you can truly put it all behind you and consider it “done”.  But it is good for now and I am just that little bit closer to NED (the precious No Evidence of Disease) than I felt last time.

My two cancer Docs, Dr W and Dr W2 were both happy and thorough.  My tumour markers remain elevated but stable.  As in almost exactly the same now over the past 18 months, and in fact since the rise which prompted the scary scans in October 2012. So this meant no bone scan this time.  Which was very welcome news! It does mean that there will be a number of scans and extras in the upcoming Annual Big Checks in October. But that is ok, because for now I can breathe out.

My aspiration is for Dr W2 to call me “boring” and I have still to attain those dizzy heights.  Last time he saw me I was “complicated” which is much better than “interesting” but still not boring.  This time I am in a better place in the scale – “expensive”! He asked me if I need more meds, and I said that I did.  I said that I could get some myself, but he expressed concern that they might not be good quality or genuine and I agree that it is better that he prescribes these.  However, that comes at a cost! Confidence that the meds are genuine means that they are also expensive.  And as time wears on, I gather more meds instead of shedding any.  Added to that, I am fighting off a couple of infections at the moment and needed to add an antibiotic to the mix.

medsDr W2 also said that I seemed to be one of a small number of long-standing patients.  I was surprised and he told me that many stop consulting him after their acute treatment, and many return back to their original countries.  So I have some kind of loyalty pass which is rather comforting.  Dr W similarly spoke very warmly with me, offered support to the Yangon Breast Cancer Friendship Group which we are establishing and was generally very encouraging.

It was not all so warm and cosy though.  My endocrinologist was less happy with my bloodwork.  My previously wondrous cholestrol levels have been steadily rising as are my sugar levels.  I am working hard to keep diabetes (which has been in my mother’s side of the family for generations) at bay and it seems that this is not going to last much longer if the trends continue.  I find this so frustrating when I exercise so consistently and eat very carefully.  I showed him my exercise log (ok, it’s a rather obsessive log of how far I swim daily, how far I cycle and how long I exercise for – I find it really motivating).  I find that I exercise between 180 and 250 minutes a week on average. He told me not to blame myself as if there is a strong genetic predisposition then I cannot halt that.  However, I also consulted with a nutritionist to see if there is something I am missing or not doing properly.  With her, I worked through a typical day and exactly what I eat.  She looked up at me and noted that my diet is more healthy than hers!  She suggested a few adjustments – such as reducing my fruit intake and adding some protein to my evening meal.  So I will give that a try.  She also noted that the lack of thyroid function is significant in metabolism and weight issues, even taking the synthetic thyroid which also made me feel better.  But then she suggested I am for a 3 kg loss for my next appointment.  Which totally deflated me.  I feel that aiming for a specific weight goal just does not work.  I struggle and work so hard not to gain, I feel an automatic failure if I cannot lose kilos.  I prefer to ensure that what I do is right and if that leads to weight loss then that is great, but what matters is to eat carefully and exercise.

Ironically, Drs W and W2 (my oncologist and surgeon) were happy to recall me in my usual six months, but the endocrinologist wants to see me again in three months.  Sigh.  A step backwards, it feels.

The ray of sunshine in this though, came from Dr W.  He knows me well and asked me if I still swim and cycle and I confirmed that I do and that this season is perfect for the morning routine.  I told him that there were concerns about my cholestrol and weight and he instantly said that this is well known of Femara.  Which was enormously reassuring and validating, and is very much what I suspected as these issues emerged from the very first checks following the switch from Tamoxifen. And as another friend said “cholestrol is better than cancer” and for sure, it is!  It is not great but the Femara is there to keep the bigger demon at bay.

As I move forward then, I juggle the bonus combo of a genetic propensity to diabetes and high cholesterol, lack of thyroid function and the side effect tactics of Femara. None of which I can do anything about, except continue as I am.

Water music

So here I am, again on the other side of a round of checks.  Again slowly breathing out.  And again subdued. I might not be “boring” but I am expensive so that must make me rather classy – right?

And whatever else I am, I am beyond thankful.

 

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15 thoughts on “Costly and subdued.

  1. Oh there is nothing straight forward in life is there! I can really feel your frustration. I know how careful you are about maintaining an exercise and healthy eating regime. So I can well understand the frustration. Not wanting to sound too Pollyanna about it, but try to hold onto the positives about this visit and your life right now. Thinking of you x

  2. I am glad it is as well as can be. I had taken quite a break from it all, reading and writing about cancer, but you know it is always there in the shadows. I too have high cholesteral, despite eating mostly vegan, and walking running almost 20 miles a week. It is frustrating…mirroring cancer in that way… you do all you can to be healthy, yet it finds you.

    • Thank you Lauren, I have seen you step back and saw how healthy that was. Yet still cancer invades our headspace and impacts on our physical health in ways we never imagined. Continued determination and strength to you , and of course good health, P xxx

  3. Great news re your scans. I’m wondering if the work from The WEL course could help with your diet. My friend Dr David Reilly a medical physician from Glasgow has developed it. The section on food ir radical but worth looking at. It’s not a diet bt it turns some of the traditional diet advice on its head. http://audreybirt.blogspot.co.uk/2013/11/food-glorious-food.html this is the blog I talk about it and the link to his website is within it. Classy is a very good thing to be in my opinion. Audrey xxx

    • Thank you so much for this, Audrey – I have looked out the link and will see what it suggests.Exactly, I am not looking for a “diet” in that sense but to ensure that my lifestyle and eating patterns are as health giving as they can be. All critical if I want to stay classy 😉 xxx

  4. oy, Philippa, I am so relieved and happy for you that the news about the scan and your overall health is so positive. the cholesterol thing is always a hot button for me – I don’t believe a single scientist, nor physician, nor nutritionist has ever found the true role it plays, and that is a huge concern. mine was sky high for years, then for no apparent reason, when I was diagnosed with ST IV met BC, it became normal, even though I continued the same fairly healthy eating and exercise. I worry about the stress it imposes on people who are already carrying such a heavy burden and still so committed to things like exercise and nutrition. so I hope you will feel encouraged to take all the good news right to heart and hold onto what you’ve found out about the effects of femara from that RAY-OF-SUNSHINE doctor. thank goodness your two wonderful, caring and encouraging physicians are ones who have provided so much encouragement and personalized care – one even being so interested and taking the time to talk with you in such a positive manner about the Yangon Breast Cancer Friendship Group.

    I hope the infections are well on their way to being resolved. I know – it’s easy to incur expenses that really add up in an alarming fashion, especially with medications. but you are so worth it!
    I think it’s marvelous you have deemed yourself CLASSY AND EXPENSIVE – much better than BORING AND EXPENSIVE, at least for now, right?

    next time you are swimming, and floating looking up at all the beauty that surrounds you, I hope you will be blessed with overwhelming serenity, Philippa; soak it up and revel in it, as I know you do -YOU DESERVE IT!

    much love and light to you, my Friend,

    Karen XOXOXOX

    • Thank you so much, Karen – yes there is so much which is encouraging. I think it was frustration more than anything else, and the surprised look when the Doc saw how much I do exercise and heard the detail of what I eat.

      I just need to settle back into my routine, I think and let the past few days fade gently into the distance. The infections are slowly resolving and I do hope that this course of antibiotics banishes them for good!

      Thinking of you and wishing you serenity and continued grace and strength, and continued good results.

      Love and sunshine to you too
      xxx

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  6. Thanks for the update. I’m glad about those “boring” parts. I totally understand your frustrations. I’m working really hard on some similar issues and the progress is painstakingly slow. Guess we just carry on and do our best. xoxo

    • Thank you so much Nancy – it helps enormously to know I am not the only one with these frustrations, and that it doesn’t mean I am not thankful. Thankful and frustrated I guess! 🙂

  7. Philippa, I’m so glad that you passed the “major” tests and can breathe some sigh of relief. The cholesterol and other health issues simply are not pleasant, especially since you are so proactive in taking care of your body. Keep swimming, cycling, and eating right. That’s all anyone can do. It is frustrating when it seems like you’re getting nowhere, but the exercise still helps cardiovascular health.

    Hang in there and be strong,

    Hugs,

    Beth

    • Thank you for your lovely comment and consistent support, Beth. I know that if I don’t do anything then the effects are seen almost immediately! But as you say, I know that all the exercise is good and what is more, I do enjoy it. It makes my day very different and that is to be cherished. Take care and thank you P 🙂 x

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