Three months has gone by so quickly since I wrote my last post. It seems years since I was struggling under the weight (pun intended!) of Graves. Since my cancer diagnosis it’s been all about that. I’ve had some blood tests that show my TSH is ‘normal’ but antibodies are still active. Thats more than a year on. The best advice I’ve been given is that sometime after chemo finishes (late June) they’ll get back to my Graves and see what needs to be done. Right now…I want my thryoid out. I’d be much happier managing with thyroxine everyday than the rollercoaster it’s led me on. Come July….rack me up and rip it out! I wish I’d been more assertive on that a year ago. My mind is made up pending a doctor agreeing. Coincidentally, my eminent breast surgeon is also an eminent thryoid surgeon so I’m sure I’ll get him on side!
Meanwhile, I’ve got 4 chemo cycles with 2 to go. I’ve not been able to work much due to intense reaction to the drugs and side effects. Work has been amazingly supportive. Their stance has been..come back when you’re ready. Hopefully, that’ll be sometime in July assuming I get the all clear from genetic testing which means I’ll proceed to radiotherapy and after that (cross fingers) ‘the all clear’ and back into a normal life. As normal as I can live life anyway!
Meanwhile, life goes on. Good and bad things happen. I probably won’t come back here much to post but will leave it here for a while as hopefully new Graves sufferers will use this diary as a resource as to what they might expect (
hopefully without the cancer part at the end of it!).
R xo
Categories: breast cancer · cancer · graves disease
Tagged: breast cancer, cancer, graves disease, surgery, tests
Going to the endocronologist is a little bit like a highbrow game of bingo, and there are only a handful of numbers being played for. But if you get those numbers right then you win….something. Warm fuzzies? It’s funny too how you feel like you, the individual are responsible for achieving certain number, as if you had complete control over your physiology. If the numbers are good, you feel like you’ve achieved something. If they’re not right, you somehow feel like you didn’t work hard enough to get them right. The whole problem of course, of having an auto immune disease is that…you have no control. You wouldn’t sit around with a drip adding poisonous toxins into your own blood stream, or at least a sane person wouldn’t. But essentially thats what Graves is. And the evil genius behind it all are those pesky antibodies. The endo said to me ” I was a bit worried about you because your body wasn’t reacting the way it’s supposed to”. No kidding! But then I’ve always been a little…left of centre.
Finally my T3 is within normal. It’s at the upper end of normal but still….normal. The doc said it might take a month or so for my symptoms to catch up (I still have the odd heart palpitation , breathlessness, muscle weakness etc). She said within a few weeks I should start to find exercise somewhat easier so once I start my new job (next week) I’m going to get a trainer who can help me, especially with strength training. It’s hard to explain how weak I’ve become. I’m as ‘plushy’ as a foam sofa to use a funny phrase from a friend of mine. I used to be one of those people who did boot camps and could happily ‘drop and give me 20 man style push ups (at 8am on Saturday mornings…crazy right?!)…but not any more. Opening jam jars is hard enough! It’ll be tough but I know I feel better when I’m stronger and exercising regularly.
Meds have been reduced from 5 down to 2 carbimazole per day and I’ll stay on that regimen until October when I’ll have my next blood test and consultation (and pending those results, another in January). Apparently they’ll then review me in April next year (12 months into this journey) to see where my antibodies are at and what my chances of still having the disease are, along with potential for relapse (a 50%+ chance).
When I see the relapse numbers there’s a part of me that feels like I’m on a long journey towards a thyroidectomy ( as has my grandmother, my mother and two aunts) but I’m trying to stay positive that I might be the one for whom this rigmarole all works and I can remain surgery free!
Categories: graves disease
Tagged: antibodies, auto immune disease, carbimazole, doctor, endocrinologist, exercise, family, graves disease, surgery, symptoms, T3, thyroidectomy
I’ve been feeling better this week, a lot better. I’m still having one cup of tea in the mornings but the strong, long cappucinos are on hold. I’m not missing alcohol at all and I thought I would. Tonight I was at a work function and on the way home I thought about how much better I feel without that slightly ill, dizzy, tipsy feeling. So thats all good and I’m glad.
But now the focus goes elsewhere. I thought I was having a bad week on Saturday when the nice Japanese lady drove her car into and nearly through my passenger car door. Ok…it’s just a car and I can take the bus for a few weeks while they fix it. But yesterday my other sister confirmed her fears that the cancer she’s been battling for the past three years, is back. Shit. So despite the disfiguring surgery and the stomach churning chemo, the cancer is back. Double shit. They’re planning surgery for her late next week. More scars, but hopefully this tumour will also be self contained. And then what?
Categories: cancer · graves disease
Tagged: alcohol, caffeine, cancer, sister, surgery
