Got my letter yesterday telling me when my next oncologists appointment is - and it's not for another month. Didn't feel like waiting that long for my scan results after RAI, you know the one? You go into hospital, take a pill, get classed as a danger to society, so you get locked in a room with a star trek air lock door, then studied and scanned like a science experiment to see where all the radiation has congregated. Well, couldn't get through to my oncologists secretary, soI called my specialist nurse. I have to say, she's WONDERFUL. She's always cheery, softly spoken, just a genuinely lovely person. Well, she called me back yesterday morning to say she'd got my answerphone message and hadn't forgotten about me, she just wanted to speak to the oncologist before telling me anything. Totally fine, she promised to call me back later.
So she calls me back, and it's the news I kinda expected from how I was feeling - but hoped it wasn't. The problematic rib still has cancer in it. That has been there for who knows how long, but we've known it was there for 4 years now as it showed up on my first ever RAI treatment scans. It just doesn't seem to want to die! I also now have it in my spine, in not just one - oh no, I'm much more blessed than that - no I have it in two places! Whoooo! Go me! So it would seem that T8 and L1 are both sporting cancer now too, and boy can I feel it!
T8 feels like there's a burning, red hot, poker being shoved straight into my spine, while some flea plays the harp with all the surrounding nerves to make the pain radiate outwards into my shoulders and upwards into my neck. While L1 sits there quietly, waiting, like a ninja. No constant pain from him, nope. He strikes whenever I try to move. Want to stand upright? Tough! Want to turn your body? Nuh uh! Not without a quick stabbing pain to remind you he's there!
However, I've been thinking for a while that cancer rib needed a name, like brain tumour has a name. I've mentioned it before, but as the brain tumour is there and doesn't seem to be going anywhere - I named him Tom after Voldemort in Harry Potter. Cause in the first book, he lives in Professor Quirrel's head, just like my Tom is living in mine. So with the news that cancer rib is still cancer rib, I needed a name for it. And yesterday, it was named! Lynchmill in the Thyroid Cancer group made a comment, something like wondering if I could have the rib removed like Adam from the bible. And that was it! That lump of cancer is now called Eve! Because Eve grew from Adam's rib in the bible, just as the cancer is growing from mine. So both are named after two of the biggest selling book (works of fiction), out there. So I think there's a theme there. We'll see how these spine things go, but there might be ore names needed in the future. Feel free to suggest names for these two in my spine, just in case they don't b*gger off!
Why name them you might ask? Well, giving them a name means you can curse them and blame them when you're in the mood. It's much easier to say 'Tom's playing up' as an explanation than it is to say 'My brain tumour is playing up'. One can be said in mixed company, and without bringing the mood down. The other just sounds scary and ominous, and depresses folks as they suddenly remember that you have cancer. No-one wants to be reminded you're sick, especially not yourself! So name those lumps and bumps, or give an overall name to the cancer itself. Tailor it to how you're feeling, and what you're feeling. Mine have individual names, because what they do to me is very different to each other. Tom makes me forget words, or drop things, or have problems seeing. While Eve gives me pain and stiffness, and sometimes shortness of breath, all of which means I need to grab a seat and have a rest. So Tom is like, a trickster, as what he does to me can be quite amusing and ridiculous - easy to laugh about, if a little frustrating at times. While Eve is just mean. It's like she's constantly PMS'ing, and has a knife to shiv me with, and isn't afraid to use it vigorously and freely!
But then see, I got to thinking. The last time they did the treatment, cancer showed up in these spinal areas - but they didn't think it was actually in my spine. Just near it. The extra scans they did this time must have properly pinpointed where it was, so they could confidently say that it was def there. But, my concern - well, concern is probably the wrong word. More just a 'wondering'. Anyways, the first time they did the RAI, I was given the injections and it showed everything up everywhere. Skull, arm, shoulder, rib, and pelvis. The second one they did, I came off my meds and it showed up just in my rib. The third time they did it, I was on the injections again - and it showed up in my rib and then in the small of my back and what they thought was more in my shoulder/near my spine. This time I've come off my meds, and it's still in those three places. So my wondering is.... 'new' spots have only ever shown up when I've had the thyrogen injections, not when I've come off meds. So is there still stuff lurking in there that's not shown up because I didn't have the injections? Next time, because there will be a next time, I think I'll ask for the injections - just to see what happens that time. I'll turn myself into my own experiment this time!
So the sucky thing is, that because this scan has shown cancer, it means it's not all gone, which means I do need another RAI treatment, which means I'm going to be 'ill' for at least another three years. Joy. Why three years you ask? Well, my body isn't doing so well with the radiation. The bone marrow is weakened/killed off, the white blood cells drop, and the red blood count drops too. So it means that for the first 6 months ish after treatment, I catch every bug going - so anyone with the smallest sniffle needs to keep away, and heading outside into public is like running the gauntlet.... speaking of, I have theatre tickets for tomorrow night. Must remember to dose up on pain killers to help me get through! Then there's the lethargy and the not healing if I cut myself/injure myself/etc, and just generally feeling really REALLY rundown. Each treatment I get, my blood count drops to danger levels, and it slowly climbs back up, but never back up to where it was before the treatment. Then there's the pain and discomfort of the cancer in the bones - not pleasant. All in all, after each treatment it takes about 18 months minimum before I feel myself again. Then roughly 2 months later, I get another treatment and it all starts again. Hence, the three years. And it's only three years if the next RAI scans are clear. If they're not clear - then you can add another 3 years on to that date. And so on and so forth.
So yeh, bit down at the moment with everything, but that will just be for today I'm sure. I'm not one for staying down too long, and I know I'll bounce back again later today/tomorrow. After all, tomorrow I need to concentrate on managing to shower, dress nicely, and leave the house for the first time since treatment...... that will take all the energy I have, so no time to be down and grumpy. lol.
Onwards and upwards!
