Monday, May 26, 2014

Blah blah blah

My body  is letting me down. I am grateful that I do not have a terminal disease and that the doctor today did not send me home 'cos of that, saying he would have to go back to the drawing board (metaphorically, he never actually used those words) but I do realise that there appears to be nothing that can be done to improve my stomach.
I went on Resolor, which involved getting permission from the Medicine Controls Council here in South Africa, but it didn't work. I still have a bloated stomach. I have tried everything. Not eating foods high in fodmaps and that doesn't work. I have been on endless amounts of antibiotics and that doesn't work. Today he prescribed spasmo-canulase which doesn't even need a prescription. Quite a change from the resolor and rifaximin which also isn't registered in SA but can be obtained at a pharmacy in Bryanston.
Meanwhile my stomach is mostly bloated like a balloon - like the rifaximin at first, resolor had some improvement as it stopped the bloating immediately below the boobs but that didn't last. And I have flatulence and burp and have this burning feeling in my upper chest which the GI-doc today said is regurgitation.... and ...
But it doesn't stop there. Saw The Lymph Lady today and my arm is a f.. disaster/. Up by half a cm or 1cm in all of the six places she mentions.And I didn't even realise it and we don't know why.
Did consider the meds - Resolor - but it doesn't seem to have that effect although going to google it further.
Am in despair. I don't want lymphedema. I don't want to wear a sleeve. I need to get my stomach sorted. Urgent.

PS. I don't have to wear a sleeve yet. Am seeing The Lymph Lady again next week.

Monday, May 5, 2014

It's not like nothing has been happening....

I never thought I would be one of those who stopped writing their blog or became an erratic poster. My blog sustained me during those perplexing times of treatment and afterwards, as in after treatments, I felt an affinity with those I met online.
Then I went to London. Three months. I have never been away that long. Probably 'cos the lousy SA rand is useless.... the exchange rate is exorbitant and I am lucky to have travelled as much as I have. But apart from a one month fellowship at Duke University about 8-9 years ago, nothing of any significant duration.
This was also work. Hence I could do it. Although I did spend an astronomical fortune of my own money as I indulged in that glorious city, out every night, seeing shows and more shows, and so much dance, I became a member or whatever they call it of Sadler's Wells.
After I had been there for a while, I remembered: I have a blog. But I was too busy gallivanting to write.
And then I came home. And I felt I didn't want anybody to know about my life. I didn't want to talk about my private things. I didn't want to be exposed. And many people - well, two to be exact - have also suggested I write a different blog (they don't know about this one), that I write something relating to my work to promote myself more in the public domain. And I also think I should. I did try once, but found it hard to sustain. But now need to make more of an effort.
But that is not what I sat down to write tonight.
I want to talk about how this year has not yet come close to what I planned: how I was going to be frivolous and smile more and laugh more. Instead, I have been more anxious than ever.
Yeah, there are reasons for that. Not health ones luckily, well, some health ones like my bloated tummy and that endless saga, but luckily nothing serious. Although I did find what I thought was a muscular thing above my left boob and then the biokineticist said it wasn't, and then The Lymph Lady also said it wasn't lymph and I raced off to the oncologist on Wednesday, hours before I was leaving on holiday, and he said it was cartilage from my rib, and then today I had an ultrasound which confirmed I am ok.
And I have gained three kilograms. And I did go on tamoplex, the generic of Kessar which is the tamoxifen I take, because my usual one was temporarily unavailable, and then in the second month I noticed I was sweating unbelievably, as in the back of my neck being soaked and my driving home after 7pm on a not-very-hot night with the aircon turned on higher than ever before, and then the next morning taking my pills and looking at the damn pill and then realising I am having the worst reaction possible to the tamoxifen and then phoning the pharmacy and luckily Kessar was back in stock and they delivered it to my work later that day and suddenly I no longer have such hot flushes and something has lifted (think I was depressed) but I am still fat. Well, fatter. Always been fat.
Which sounds so complacent. But that's for another time.....
So here I am. Monday night and at home and quickly catching up on some work stuff and reading a lekker book which I will finish later (Zoe Wicomb's October) and just generally being ok.
And I will try to remember to smile more. Now giggly. That would be ideal.
And on Wednesday it is the general elections here in South Africa but I have to work although will vote too.
Hope you're all ok out there.