It’s been too long

Firstly, thank you for being so patient during my silence since May.

I had started to write a post several times but was struggling to put into words what I was thinking without sounding like a wimp. Of course, you probably wouldn’t have thought that but; that thought was powering my procrastination. As always, not doing something usually leads to bigger issues and now I have to write a blog that I really don’t want to do but here goes.

One of the drafts was entitled ‘the pressure is real – even when it’s generated internally”. This was to talk about the fact that I was struggling with work. I felt really bad about this because everyone at work, without exception was so supportive but still I found my self confidence and energy sailing off into the sunset. Long story short; I was re-assessed in mid June by the occupational health representative for the income protection insurance company and instantly signed off. This was a huge relief, in fact it was the relief that made me realise how much it had been getting me down.  At the same time, it felt as if I had failed and I think that’s what made it difficult for me to talk about

Since then I have been finding things to keep me busy particularly with other people because the solitude being at home all the time was one of my key issues. When I’m engaged in an activity with other people I become more energised instantly!

Then at the end of June I went for my routine visit to see Dr Alexander my oncologist. My markers had been slowly creeping up since February. She wasn’t worried because they were still in the normal zone but scheduled a CT scan as it was a while since my last one. I had the scan on August 31st and went to get the results last Tuesday.

Although it could be much worse, it’s still not great. I have tumours growing in my liver again. I’m sorry, I didn’t ask the right questions so I don’t know how big they are or if they’re new ones or the original ones growing again but I will find out in 2 weeks! We have kicked the tamoxifen into touch as it’s obviously no-longer working for me and I am taking a tablet form of chemotherapy called Capecitabine. It is essentially the F of FEC. It turns into F once it has dissolved in my stomach. I have to take it twice a day on a full stomach and will take it in three week cycles, two weeks on and one week off. My bone treatment has been drawn back into a three weekly cycle to line up with it so that I’ll go in for that and be assessed and re-issued the chemo pills for the next two weeks. This will continue for as long as it works.

I’ve been taking it for a week now and although the side effects are pretty much the same as all chemo but less powerful so for instance, my hair is likely to thin rather than fall out completely, I’m feeling good ?  Dr Alexander said the side effects I’m unlikely to be able to avoid are dry, cracked palms and soles of the feet and “loose bowels”! She recommended Udderly Smooth – a moisturiser based on udder cream (which has been used in my family for years since my grandparents were dairy farmers!) and that I stop taking my regular laxatives.  I have been slapping on the cream but I have had to start taking the laxative again!  Chris asked me if I had concrete in my bowels ??? what can I say – my cast iron constitution is looking after me!

I’ll keep you posted on progress – in the mean time: here’s a photo of me and Phil taken when we were up in Derbyshire for Mum’s 70 at the beginning of August… look at all my hair!!!  We had a really fabulous time and managed to catch up with lots of friends and family which was lovely ❤️

Talk to you soon, lots of love Mand xxx

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12 thoughts on “It’s been too long”

  1. I cannot believe those bloody tumours were growing again when we saw you in August! Shit damn bollocks etc etc. You looked so beautiful (still do ?) keep smiling my lovely cousin, the new treatment will do the trick ??

  2. Well done you – some things are completely out of our control but I think if you add a little bit of your unique ‘zest’ to any situation then it would only make matters better. Lots of love xxx

  3. Amanda Black – you truly are the most wonderful, rainbowy, unicorny, bubbly, loveliest person I know. We will fight these bad boys, you have a wonderful team of friends and fantastic family wanting to help in any way we can.
    Much, much love Hxx

  4. I love that photo ? missed you this week, must pop over for those boxes next week and have a catch up. Keep smiling, Liz

  5. You are amazing and such an inspiration to anyone who is going through the same . Liz xx

  6. The latest blog must have been a very difficult one to write, however, as always, you have written it well. I am sure you will continue to amaze us with your positive attitude and love of life and people. You know that you have an army of supporters willing you to do well.
    Take care and keep those unicorns working.
    Love you, Mum xxx

  7. You are amazing, so positive and a true inspiration to us all. Please keep us posted with your progress. Lots of love Roo xxx

  8. What a wonderful happy picture of you at your Mums 70 th! We are all routing for you here in Wilburton, sending love and big hugs. Keep smiling. X

  9. Hi Mand. Wimp? Never! Inspiration? Definitely! Hope you are not feeling too rough from your treatments.Love the photo. You and Phil look like a couple of teenagers!! Love from Llinos x

  10. Amanda, you look lovely on the pic, exactly how I remembered you from few years back 🙂
    Sending hugs and best wishes from Poland!

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