Letter from the North

There isn’t always a happy ending – 15-Feb-2018

This is an intermediate post, last weeks and indeed this weeks are still gestating, but since all I did yesterday was update Facebook, I thought I’d update here for those who can’t see my FB posts:

Yesterday we went to the Sunrise centre for the results of my 3 month scan. Not good, not yet bad, indeed rather confusing. We didn’t see the consultant and his oppo seemed rather confused.

So, best as I can establish, primary kidney tumour unchanged, some smaller mets shrunk, shoulder one (the largest by far) grown. So, looks like the Pazopanib is not working for me. Another scan in 6 weeks’ time (instead of 3 months) and reviewed on 4th April. If that is still negative then it’s onto drug 2 (in a list that only has 3 or 4 drugs and the rest are more unpleasant) to see if that works better.

The problem is this shoulder met and unfortunately I can now start to feel some discomfort from it which will only get worse.

So, no my world hasn’t yet ended, on the other hand it doesn’t look like there’s going to be a fairy story ending either ☹

I am, at the moment, pain killer free (from the broken bones), however the withdrawal symptoms from the Tramadol are horrendous and I have been very poorly for a week, yesterday I started to feel human and today is my first day in a week that I really feel like me.

I am scared, of course I am, I am upset, of course I am, ditto in bucket and spades for Teresa. But we are strong together, we are fighters not victims and we haven’t given up, not even close. BUT we also have to be realistic. It is not an easy tightrope to walk between realism and hope and even writing these blogs can trigger those tears and yet without sharing these hopes and fears nobody knows and I think it matters that cancer, especially the non treatable sort, must not be allowed to hide away in the shadows. 

Yes, my prognosis is crap, but there are many of us in the same boat (and worse), we know that you care, but in the end, this is our journey, in the final analysis it is my journey, just like it was Len’s, Jo’s and so many others. I don’t feel alone and I don’t want anyone to feel alone so I will continue to drone on with talk of fatigue and nausea, poo and depression and the good bits too because, for me and people in my boat, they are just as normal as popping down to the North (which I don’t bother with much because I can’t taste the beer, now that IS a loss 🙂 

Postscript

Yes, we got those results on Valentines day, that could have been a disaster, however Teresa and I have a policy of celebrating NonV day (Non Valentines Day). We pick a day, close to, but not the day and so not “commercialized to hell” and celebrate how we feel about each other without any of that commercial stuff clouding the issue.

Normally we’d have a hotel and meal booked well in advance, for some reason we haven’t managed that yet this year, but we will find a place to have a meal, I might even be able a bit to taste some of the food, but I doubt it! We WILL find a way, even if I just sit there eating chocolate!

Bean Thursday 15-Feb-2018

2 Comments

  • Kate Mole

    Dear Bean,
    I’m sorry to hear it wasn’t better news. Disappointing, I know. Do keep blogging, though. And do have a nice Non Valentine’s Day! You know we’re all thinking of you both.
    Love,
    Kate.

    • Bean

      Thank you Kate. I have just started this week’s blog and there are two in the queue for Teresa to edit. However she is busy decorating our bathroom so one or both will be released without the sanity check of her touch. My writing is pretty wild, no matter how hard I try, so it may not be quite as clear as it usually is 🙂

      Not sure when we can our Non-V day, we are focusing at the moment on understanding what affects my taste issues which would make it more possible for me to find a meal on a menu that I can taste. I might be ok eating chocolate while Teresa eats a nice meal, however the pleasure of our Non-V meals is based on us both doing a detailed analysis of our meals and discussing them. It’s part of our pleasure. It would be a shame to have to give that up. So, we’ll get a better handle on the problems of partial taste buds and “dry mouth” before we try a restaurant.

      And yes, we know you are all out there, supporting. I never see anyone, but, slowly, Teresa does.

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