One year on...

Today is a year since my operation. Even though the dates of some things last year are still a bit fuzzy (because of all that snow, and the fact that April turned into May whilst I was in hospital and I never really knew what day it was) this date is one I do remember. Last week I was thinking about it, and while I won't be having a party to commemorate it, I did think a blog entry about the things that have changed in this period of time.

Really, the biggest things I've learned is to trust my body, and I've said this time and time again. I try not to be repetitive with these entries, but before all this I was pretty stubborn about going to the doctor for any health worries. First of all, it can be very difficult to even get an appointment in the first place. Then when I get there, I find it hard to explain what is wrong! There are times when I have thought to myself,"Oh, why didn't I just go to the doctor when I first discovered a lump in my neck?" I just didn't find the lump all it's own to be particularly worrying at the time! It wasn't till I discovered more than one lump, and realised the exhaustion I was feeling was disproportionate to the amount of activity I'd done that day, that I realised something wasn't right. That was the first moment that I realised I should start trusting my body.

I think the second time was during summer when my calcium levels were too high and I was nauseated nearly all the time! When the nausea first started I couldn't pinpoint the reason for it. Then, I started to wonder if is was all calcium-related. My suspicions were right, and the nausea was caused by too much calcium in my system. The nausea was horrible, though. It was unpredictable, it stopped me from doing things, it affected my appetite (that was the worst part, I think!) My appetite is back to normal, now, and now my calcium levels keep being too low rather than too high. That isn't much better, to be honest, but I think it is easier to control and keep an eye on.

The endocrinologists look after me now and I have a really good relationship with them. I find them easy to talk to, and the best part is, when I was having a calcium dip a couple of months ago, one of the senior nurses asked me what I wanted to do. It was really refreshing to have her say that to me. Of course, the thing I really want to do is never take calcichews again, ever, but I know this is not an option, and that suggestion would have been laughed at!

Moving away from the subject of calcium, I have been also thinking about life now, compared to life pre-diagnosis. Probably not a thread I should be pulling at, but I've been feeling pretty reflective lately. I finished university in 2011 and it has been so hard to adjust to post-uni life. Before I finished, somebody told me that the race I was running was my race, and I wasn't to pay attention to the races people were running around me. I did not heed this advice though, and ALL I could think about was other people's lives (my peers, specifically) and how much better they appeared to be doing. I started to doubt myself, and question whether or not I'd wasted my time at university. At no point did I congratulate myself on getting a 2:2 even though I was grieving for my dad. All I could think was,"When's it my turn?" Things started to pick up early last year, so to get that diagnosis just knocked me sideways. When I walked into that consultation office earlier this month, expecting good news but instead being told the results were inconclusive, I was so disappointed. I was disappointed because I thought getting the all-clear that day would be some ultimate victory. I would have won something for once! The more I thought about it, the more I realised that that news was not final. Sure it's annoying to have to keep being tested, and keep waiting, but that doesn't mean that a "victory" can't still come along. I've got to get myself out of that headspace, anyway. Life is far too big and abstract, too full of twists and turns. Sometimes you'll feel like you're winning, and sometimes you'll feel like you can't stop losing. It's why in this past year I've tried to celebrate the little victories. Even when I've felt like I was losing, I've tried to find little victories in it. You have to, or you'll go crazy!

Who can tell where I would be if all this hadn't happened? Maybe working. Maybe still looking for a job. Sometimes I have grieved for the life I didn't get to live while I was being treated for, and recovering from cancer. To me, it started to feel a bit pointless to do that, because I had no idea what else I would have been doing! Now, I'm just moving onwards and upwards!

Physiotherapy

I had my second session today. He asked me if I was doing any better, but I just said I felt like it was too early to tell (he agreed, thankfully) I am much better than I was, though. I know that, because when I first came out of hospital I couldn't wash my hair on my own, get dressed on my own, or even put a coat on my own! I can do these things now...Well, I need a bit of a rest when I wash my hair, but I can do it! I just need to loosen up my muscles now.

The first session was just seeing what I could and could not do, and then he gave me some exercises. Today however, he had me lay face down on the examination table, and he pressed down on my neck, shoulders, and back, so he could get a real idea of the extent of the stiffness in my muscles. It hurt on my neck and shoulders, he was really pressing down hard! Parts of my back, neck, and shoulders were a bit tender. Also, I am ticklish (this information is not to be used against me, thank you) so there were times when I flinched because of that, rather than any pain!

He is quite a nice man, and I guess that that is good, because if I thought he was mean, then I would resent him for making me ache so much!

My iffy shoulders and neck, my calcium levels, and my fatigue, are the main things that bother me. The fatigue I cannot really control. Well, I can to a certain extent (such as listening to my body, and resting whenever I feel the fatigue setting in) However, I feel like the situation with my shoulders and neck, is something I can take control of with the physiotherapy. I feel like it puts me back in control of the situation, and could be the catalyst for me getting back into work (though, given that I haven't been given the all-clear yet, working is still a long way off and I am getting ahead of myself!) It's just that so much of this entire situation has been out of my control, that it's just nice to feel like I have some control somewhere. (Yes, I know I have said "control" a lot in this entry. It's the banner word, I think!)

Little update

Last week the thyroid nurse rang me to ask if I had any questions about my results, so I took the opportunity to ask for more information about this thyroglobulin business. She explained that the reason they need to do an MRI is because the radioiodine scan cannot tell us why there is thyroglobulin, whereas an MRI can. She went on to explain that sometimes thyroglobulin can go away it's own, and it would be great if that could happen! The other possible outcome is that it is a node that the surgery AND radioiodine didn't quite get before. If it is a node, its clearly resistant to the radioiodine, so I might have to have MORE surgery to get it out. Something which I really don't want to go through again! We don't really know what is happening for sure, so I'm trying not think about all the What Ifs too much. I'll go crazy if I do. 

What else? Oh, I FINALLY saw a physiotherapist. Had my first appointment last week and he gave me a few exercises to do. All in all it went okay. I just find it very difficult to explain exactly how I'm feeling, to any sort of medical professional. This is problematic when you're trying to get the help you need! 

Calcium is still an annoying thing in my life. I am on six calcichews a day right now (adorable name for a horrible supplement!)  Despite this, I am still having tingly feelings. I remain convinced that low immunity affects, but when I mention it to any of the endocrine staff, or any of the thyroid specialists, they say they've never heard of that happening. I think I need to get some chewy vitamins again, and down some Berocca, just to keep the immunity up! I am still having weekly blood tests, but my go-to vein appears to be packing in, now. It's getting fed up of these blood tests. I know how you feel, vein. I know how you feel. 

So, nothing is really new. I wanted to do an update anyway, though,  just to get all these new developments in one place! 

It's complicated

So, today was the big day. The day I would receive the results of my scan. I was pretty nervous, and couldn't really think of anything else but this appointment. I wanted it to be good news though, so that maybe it could all be over and I could just get on with lighting a bunch of pyrotechnics and having a celebration. The news that I got, was not bad news, but like I said, it's complicated.

So, there were no tumours found as far as I know, and the consultant today felt my neck and said she could not feel anything. However, she said that blood tests showed that I had high levels of thyroglobulin. Now, I did not what this was, and the consultant didn't really explain it properly (do they ever?) Mum did a quick Google when we got home, though, and discovered that where there's thyroglobulin, there's thyroid cells, which I should no longer have (cancerous or otherwise). They don't seem too worried, though (and I'm not either, really) but they want to do an MRI just to be on the safe side. I'm fine with this, I want them to be sure it's all gone before they tell me it is. My main issue, is that I have to wait till July for the results. JULY!

I came out feeling a bit deflated. I wanted it to be over. I wanted to come home and have a whole day of spreading the good news around. Instead, I've been starting conversations with,"Weeell..." and attempting to explain what is going on. Needless to say I have been sulking all day. Gradually accepting things, but sulking quite a lot as well.

I guess I wanted it to be over mostly so that I could get on with life, but I still can. Just a bit of a slower pace than I would like to be going. I really do have to be patient with myself, and easy on myself, because so much has happened and there's still more to come. The worst thing I could do is become a grumpy hermit who never does anything. It would be so easy to do that, but I'm fighting against it, and trying to find things to look forward to! Tomorrow is a new day, and I will be formulating a plan of things I can do to get back to normal (whatever the heck that is).

Well, it's done

Treatment is done. It's been a tiring week. I don't even know how it's been so tiring actually! It's not like I've been sitting around in  hospitals for hours, they're very efficient up at St.Jame's! I'm just not quite sure why I'm feeling worn out.

Still, it has been somewhat stressful. I guess some of the emotions I have felt have contributed to me being tired right now. I hadn't been up to St.James' in a long time, so it did bring about some flashbacks. Not to mention that the thyroxine did make me incredibly nauseous. I did expect it, but somehow it was even worse than last time! That made me nervous about the radioiodine itself, given how ill that made me feel last time. Fortunately, I was worrying over nothing (a hobby of mine!) The smaller dosage meant that none of the nausea I'd had before happened this time. I had a bit of tightness (another side effect that I'd expected) but other than that, it was fine.

Now I have a two-week wait until I get the results! However, even though my treatment is done, I'm by no means out of the woods on the hospital front. I still have to go for a blood test tomorrow, which I'm a little worried about. I know I've had another dip, because I could not keep anything down on Sunday, and that includes my medication.

The calcium thing is pretty much always on my mind. This week I was wondering why this seemingly constant rising and falling of levels hadn't affected on my first bout of radioiodine treatment. When I trace the timeline back in my head, I feel like I didn't really have a problem with it till afterwards. Not only that, but when I was in the BRI, they seemed to think that my parathyroid WAS working, but a recent blood test showed it wasn't. Which got me wondering if the first lot of radioiodine is the thing that somehow killed my parathyroid! Just a theory. I mean, the timeline may not even be correct, but I plan to bring it up next time I see a doctor.

I feel a little bit weird. I don't feel quite relieved just yet. I'm just still having the fear of moving forward. I know that it will be good to move on from this, and put the experience behind me, but at the same time. I feel cocooned in this state of recovery. Like, I've been institutionalised in recovery somehow, and I kind of just want to stay in it forever. It's a not a healthy perspective, I know that. It's just for almost a year now, this is all I've known and doing anything else is frightening! I think it's because before this, I was job hunting, and while I've been recovering I've not really had to think about it at all, but I will have to again at some point. On the other hand, I don't really have a routine right now. So if I could one of those back, then that would be great!

It's all up to me. To be honest, that may be the scariest part.

So close

(I could have called this, "pesky calcium part 4", but there is more than one meaning to the title of this entry. I'll get to it later)

It was all going so well with my calcium dosage and my levels! However, my endocrinologist thought I was on too much calcium, so I reduced the dosage, and my body did not respond well to it. I spent last weekend suffering from low calcium symptoms (including a frightening couple of minutes with a very dead foot). At first I dismissed it as low immunity, but I knew I should listen to my body and what it was telling me. So I made sure to mention it when I went for a blood test. Turns out it was very low indeed, so the dosage has been upped again. 

At first I was confused as to why the doctor wanted me to reduce it, as I was doing fine. Now that I've thought about it, however, I think I know why. My calcium levels were climbing on the dosage I was on over a week ago now, so if I had stayed on that dosage I probably would have been heading for the Danger Zone. It's much easier to sort out a level that is too low than it is too sort out a level which is too high, and as much as I hate tingles that come with low calcium, the nausea that comes with high calcium might just be worse!

Now on to the second meaning of the title of this post--the last part of treatment is this week! I feel like its been coming for ages, and now it's here. I have no particularly strong feelings towards it. Maybe relief? Really I just want to get it over with. I have to take a smaller dosage of radioiodine, so I won't have to stay in hospital this time (which is GREAT because that gets really boring, really quickly) then I have a scan two days later.  I'm anticipating seeing my old friend nausea this week, but hopefully it'll be okay. Send me prayers/good vibes/pictures of cute animals! 

I really feel like I ought to be making some grand speech but, I'll just say thanks. For everything. Everybody who supported me and showed me love in their own little ways--thank you!

Things and stuff

First things first: the calcium is climbing up! The safest level is 2.2, and last I heard I was at 2.15. I had some blood taken on Thursday, and I have to have more taken next week. Everyone in endocrinology pretty much knows me by now!  (I was going to say that I am on a first name basis with the nurses, but since they all go by their first names, that's not particularly impressive)

March officially starts tomorrow, and I am thinking of ways to make it fun! I've written before I think about how I wanted to do to things this month that were positive, so I would have positive associations with this month, rather than nicknaming it "Cancuary" as I had planned to when I first got the news about that I had thyroid cancer (my humour cam sometimes get a bit dark when I'm upset) I have a few things in the pipeline, such as an acting workshop I'm planning to go to! It's on 5th March, so I will either need to not do much do day, or take a hefty nap!

Other than that, I really have no idea what I'm doing with my life. It is the most terrifying yet liberating feeling ever! I guess I don't really have to decide right now, so I shouldn't let it keep me awake at night. No harm in forming some kind of plan, though. If I'm honest (a useful quality in a blog), fear is the thing keeping me from moving forward, but I do think that fear can be very positive. You just to have to figure out how to use it to your advantage!

OH, my last bit of treatment is coming up next month, too. I thought I would just have to have a scan, but it turns out I have to have some injections of thyroxine and then take a smaller dosage of the radioiodine capsule, before my scan. I am anticipating a lot of nausea that week, since they're side effects of the injections and radioiodine capsule. The superhero movies lied to us! If the Incredible Hulk was true to life, then Dr. Banner would probably throw up whenever he got angry. To be fair, that would probably be quite effective, but I digress...I guess that's another reason I want find fun things to do--to keep my spirits up! Monday I start a low iodine diet. It is not too bad. Most of the things I can't have I never eat anyway (kelp, for instance) so I'm not really missing out. It's mostly dairy and fish, and I quite like soy milk!

I have been feeling rather reflective lately, and I will just say that while I'm looking forward to closing this chapter of my life, I will never stop talking about my experience, because I think it is so important to let people know what can happen.