Well, hasn't it been an interesting year?

A year that I am about to reflect on!

I really can't say whether or not it was good or bad. It was definitely up and down. Obviously I didn't do so well on the health front, but I did make new friends (some of those being acquaintances who became friends) and I got to do some fun things, like fulfilling my dream of going to Italy!

I've learned a lot, too. I think sometimes that's the best you can hope for-to learn a lesson or two. I've learned that it's really important to get things off your chest so you don't explode or implode. I've learned that it is okay to ask for help. I've learned that you have to be assertive and honest with doctors, in order to make sure they do everything possible to help you. I've learned that I can do more than I think I can.

Around the end of one year and beginning of another, I like to pick one word to focus on (and a few of my other friends do this, too) Around this time last year I had picked ONWARD because I wanted to start moving forward. However, a few months ago I changed my word to PATIENCE, and I think that will end up being my word for 2015, too. Perhaps it will be my word forever! I just know that I need patience when it comes to my health, and when it comes to my life in general because I often feel like I'm behind my peers.

As well as patient, I would like to be healthy. Or at least as healthy as possible given the circumstances! I am taking the steps to help myself. I take vitamins, I try to eat healthily (we won't talk about the amount of Pringles I've eaten this week, though) I try to do some gentle exercise each morning (I found a video on Youtube of workouts you can do if you work in an office, but they work for sufferers of fatigue, too! I jokingly call it the Lazy Girl Workout)

I think that 2015 will be a time of growth and changes...If I remember all these lessons I've learned! So, I guess it's bye-bye 2014, and hello 2015!

Well, that's over and done with

Radioiodine treatment is done and dusted! It was so boring. On the plus side I was not nearly as sick as I was last time! I felt much more in control, too. I guess I had the advantage of experience.

I had no sickness with the injections, and only a bit of queasiness from the radioiodine itself. The queasiness was remedied with some anti-sickness. I'd really psyched myself up to feel horribly ill again this time around, and I was so relieved when it wasn't nearly as bad this year as it was last year. So relieved, in fact, that I felt slightly giddy about it!

When I first went in I thought to myself, and said to a couple of people, that I would just think of the day I come out and that would get me through it. I realised after a while that this was the wrong approach. On Monday evening I had a lot of anxiety, and I just kept thinking,"Oh, this time is just going to drag on and on!" The next morning I decided that instead of thinking about the day I go home, I'd just have to take it day-by-day.

Last week I wondered it I should some kind of A Day In The Life kind of thing whilst I was in the hospital. Thought it might be a good way to show people what the process is like. Then I realised that no amount of Instagram filters could make it interesting. (Not to mention that I don't even have an Instagram account) I can, however, offer the following pieces of advice:

My first piece of advice would be to ask questions. I am STILL learning that is okay to ask questions. I keep apologising to staff for asking questions, and they all tell me that it's okay.  If you're not sure why they're going to the treatment they want to do, or what that treatment even involves, then don't be afraid to ask!

My second piece of advice would be to take things you don't care about. This sounds obvious, I'm sure, but once you come out of hospital you have to wash the clothes you brought (twice) and then stash them away for a month. Last summer when I first did this treatment, it was fine for a while because I was wearing shorts to bed. Then one night, the temperature dropped by a few degrees and I didn't know what to wear because all my pyjama bottoms were stashed away!

Third piece of advice is to get moving! This is for a couple of reasons. 1)You might get a bit restless since you can't leave your room for a walk around the building. 2)You have to go um, number two before you leave. If you're too sedentary, then your bowels won't move. My room had an exercise bike in and I really took advantage of that this week. I didn't turn it on, I just sat and pedalled (also the plug for the bike wouldn't reach any of the sockets, and no way what I was going to try to move the bike on my own)

In fact, while we're on the subject of...that region, I would also advise drinking a lot. That way you'll pee a lot, and the levels will go down faster.

I think that's it for advice. Hopefully it is useful!

As for the treatment itself, I'm not sure how it went, and I got no indication from the technician of what my scans looked like. I won't find out how well it went till I see the consultant in a few weeks. I think I did all I could to help my body take up the radioiodine, though. Oh, and I don't have to go in for a scan on my birthday, which is great!

Now if you'll excuse me, I'm off to eat tuna melts, and talk people's ears off. Nothing new there!

Oh, life. You crazy thing.

Things get on top of me occasionally. They all come at me at once, shout,"PILE ON!" and then I'm lying underneath it all squirming.

So, I have more radioiodine treatment next week, as well as a gynaecology appointment to re-arrange, and this week I had two cysts in one of my breasts drained. So, you can see why I was ready to shriek by the end of last week.

The radioiodine treatment feels like it is just, in my way. The other day my mum asked me what I want for my birthday (which is the Monday after my treatment) and I just couldn't think of anything. Not because there's not anything I particularly want, but because I just feel like I have this flashing neon sign in my head that says,"TREATMENT". However, I was talking to my sister the other day, and she said that this treatment was like the final rinse of shampoo when you're washing your hair. You give it one final rinse, just to check that it's all gone. I hadn't thought of it that way before, and it made me feel a bit better.

I've really fallen off the no-sugar/low sugar wagon. In general my diet's been quite bad. Especially with the stress of last week. Also, I have been really bad with the radiodine, which is actually more important than just trying to avoid sugar where possible. I can't have too much dairy, but it is hard to know how much is too much. Also, I can't have tinned fish (or tinned anything, really) and today I had a tuna melt. Halfway through I remembered (I mean, the tuna melt was at Costa Coffee, but I doubt it had been freshly line caught this morning) No more! From tomorrow I will try much, much harder! My friend did point out that it probably won't make much difference, and she's right, but I just don't want to jeopardise the chances of the radioiodine working. With regard to the no sugar thing, I'm trying to get better. There is now fruit in the house, and even though I bought some biscuits yesterday, I've only had two of them. Of course, this may change at the weekend if the injections give me nausea and I need something bland to nibble on.  

The reason I have to re-arrange my gynaecology appointment is because my initial one was kind of a bust. The appointments were running about 40 minutes behind, but because of the amount of people there, that would lead to a two-hour delay. The poor nurse who was given the task of announcing this said we could re-schedule, so I went to tell her I would. I just felt like I wasn't a priority, and I could wait. Also the chairs in that waiting room were not comfortable for my poor shoulders, and I knew it'd be too exhausting to go away and come back. The BRI haven't got back to me with a new appointment date (it was only last week, to be fair), but I am looking into going to a completely different hospital to see a gynaecologist. When I come out of hospital I'm going to do a bit of research. I can't really think about it right now.

I kept a bit quiet about the cyst in my breast because I didn't really want to say anything about it till I knew what it was. Turns out, it was two cysts, but they were nothing to be concerned about and I just had them drained. Apparently I have a few mini cysts in there, but I don't need to do anything unless I feel any new lumps. I felt like the nurse lectured me on the importance of seeing a doctor as soon as I find a lump, possibly because I'd said I'd found the lump about a  month ago. I did explain though, that after I found the lump I saw a doctor almost immediately (I really wanted to speak to a woman and had to wait till a female doctor was available, so it was a few days after I found it) and she told me to have a period and then come back if the lump didn't go after that period. It might be that they tell everyone to tell a doctor as soon as they find a lump, but I still felt a bit like I was being told off. I think everyone knows by now that I am a massive advocate for telling a doctor if you think something's wrong!

Onwards and upwards, though! Got to be more disciplined with myself, forget about boob lumps and endometriosis for now, and focus on this upcoming treatment.

Being in battle

On Tuesday at the hospital, my friend (who drove me and my mum there) came into said hospital to "use the facilities" when an article on a noticeboard caught her eye. She asked the receptionist if she could have a photocopy of it in exchange for a donation.

The reason she wanted a copy of it, is because she thought I might be able to relate to the article, because is about a woman suffering from cancer and using humour as a coping mechanism-- something my friend thought I'd be able to relate to! 

I agreed with a few of her points, such as coping with the situation with lots of laughter and dark humour. She mentioned as well that you shouldn't tell someone how to feel, and that is actually something I can learn from. The amount of times I've told friends and family not to get upset about me having cancer! They can cry if they want to! She was also talking about all the exciting stuff she'd done. That got me thinking about how even though I've had to sacrifice a few things due to fatigue, I've made up for it with other opportunities. 

There was one thing I couldn't quite agree with her on. She writer of the article says that she does not like to think of it as battle, or a fight. I've heard someone else say this, too (that "someone" was actually a character in Emmerdale...Oh, shush!) I get it, but I do like to think of it as a battle. That's exactly how I like to think of it (along with the old hiking metaphor) because if the internet has taught us anything, it's that it is fun to anthropomorphise things. Usually for the internet, it's cats. For me it's cancer. It helps me to think of being in a battle with cancer, with an army of friends and family. That's the kind of thing that keeps me strong, I think. Feeling like I'm fighting something. It makes me powerful. 

Everyone's got their way of dealing with something, and I cannot say that the way she is doing is wrong, just like she could not say that the way I'm doing it is wrong. I do think, however, that cancer is a big scary beast that I need a lot of assistance in defeating! 

In the aftermath

I have had some time stew and sulk over my news yesterday. Today, I have some perspective. This time I can do things a bit differently (in fact, this afternoon I was wondering if I would even need pre-assessment since I've gone through it before. I probably will, but I'll check anyway) Last time, the radiation gave me really bad sickness and nausea, and the anti-sickness they gave me did not work. I suffered with it all day, till I realised in the evening that I shouldn't have to and asked for stronger anti-sickness medication.

Also, you can have this treatment done Thursday to Monday, or Monday to Thursday. Last year I did it Thursday to Monday, but I'm not sure I picked that...I think that was based on scheduling...I really don't remember! While Thursday to Monday is better for anyone who wants to visit but could only do it on a weekend. However, neither the consultant nor the specialist nurse are around at the weekend, so I think Monday to Thursday would be a better idea.

Last time, the DVD player didn't work, so I'm hoping they've fixed it now. Or got a new one. I found a very intriguing DVD in a cupboard in the room, it was a film starring Rob Lowe and Neil Patrick Harris, and I want to watch it!

There's a few more things I could list that I would want to do differently, but I think you get the idea! I'm still not happy that I have to go through with it (does anybody jump for joy at cancer treatment?) It's just not the big, unknown...monster that it was last time. Also, I know that they think this is the best course of action, and they're doing it because they don't want to put me through surgery or external radiotherapy. So thinking of it that way makes it a bit easier to come to terms with it. I can't escape this, but I can try to make things a bit easier for myself.

Summing up this morning in one word: UGH!

I should probably explain why that word sums up my morning. See, I went to see the consultant at St. James about having more radioiodine treatment. Now, when I read the letter which said I would be having more radioiodine treatment, I assumed that I would take the radioiodine and then go home. I made that assumption because I didn't think the dosage would be as huge as it was last June, and there'd be no need to stay in hospital. I'm not sure why I thought that, but I did. I was very wrong, indeed! 

The scans showed up some abnormal nodes, and the three options for fixing these abnormal nodes are: surgery, external radiotherapy, and radioiodine. Surgery is too risky, as it is right along a nerve and could damage my voice, and external radiotherapy has too many long-term side effects. So the only real option is radio The consultant explained it all really well, and I didn't come out of their feeling like I had even more questions like I have did when I spoke to that doctor on April 1st! It seemed much more organised this time. 

So I get why they want to do this particular treatment, I just don't want to go through with it. The specialist nurse took me to her office afterwards (she'd been sitting in on the consultation) and I just started crying. The nurse was very kind and understanding, and she tried to reassure me that things could be different this time around, because I know what to expect. I agreed, but I'm not frightened. Just fed up with it all. I feel like I'm working hard to get better, and I feel mostly okay, so why is it not over yet? I actually ended up going off on a massive tangent about all the health-related problems I've been having this summer, and she's referring me for counselling so I can offload on somebody else who's a bit more qualified to help me through it! 

I don't know when I'm going in for treatment. That hasn't been organised yet. They said mid-October, and I told them my birthday is early November so I really didn't want to have treatment then! I just hope they get back to me quickly with a date! 

Things that happened in the space of a few days

This could also be called,"Pesky Calcium: Part Whatever Number We're On Now" because it got too high this week! It's been a long time since that has happened. See, when I came back from Italy I had a blood test to check my calcium, and the results for that were 2.33. This is is fine, but because my body struggles to regulate calcium, I knew it would just keep climbing. So when I was feeling nauseated last week, I thought to myself,"This is a calcium thing" and arranged a blood test. I got the results the next day, and just as I thought, the levels were too high. I'm now on a lower dosage of both my calcium medications (I take slightly less calcichews, yay!) I'm due back in next week for another blood test to see if it's come down. The nausea has passed though, so that's good.

It just ruined most of my plans. It was particularly bad on Saturday, when I had been planning to go to an open day for a local community choir, but I just couldn't do it. Mind you, it was raining that day, and I had forgotten what time the event started, so I suppose it was just as well that I didn't feel like going. Then I started to get worried that I would miss my friend's gig on the Sunday evening, but thankfully I felt much better on Sunday.

As for the ongoing saga on the PET scan, I actually got some answers! I received a letter from the consultant at St. James's, which said that she wanted me to come in on the 23rd of this month to discuss the results. I wanted to be relieved by that, but instead I still felt a bit frustrated. I would still have to wait to find out exactly what was going on! On Saturday however, I received another letter from that same consultant, who said that she felt that more radioiodine was the best course of action, and that is what she wanted on to discuss at this appointment. That letter made me feel a bit better, and like I finally knew what was going on. I just feel like I have found out everything in drips and drabs. At least some of the mystery's been taken out of it, and I'm thankful that I have the specialist nurse on my side who will go do some detective work for me and find out what is going on.

So I feel like a lot has happened over the course of a few days. Even though some plans were scuppered (new favourite word) I still got to see my friend's gig, and I don't need surgery! That, and my appetite has come roaring back! Now if you'll excuse me, I'm off to celebrate these little victories with some cereal.

Just some things

Still haven't heard about my PET results. The nurse was away last week, and when I spoke to her on Monday, she said that the consultant might be away this week. According to my records, though, there's nothing urgent. That's great, but I'd still like to know exactly what is going on so I can get on with my life! I suppose it can't be helped if she's away, though. 

My sugar strike is going okay. However, it is making me quite conscious of how much salt I'm consuming. It's a bit hard to get the balance right. Or maybe I'm just over-thinking things, as usual. I have got to stop doing that!

 Cutting out caffeine is proving difficult. I'm down to one cup of tea a day, but I'm sort of afraid to let go of that one cup! That, and my friend was drinking a Pepsi the other day, and I almost asked for a sip, just because I felt like I could taste it. Slippery slope, though. I probably would have stolen it off her, and drank the whole thing!

I haven't had any grand epiphanies, but I guess I've had a few small ones. Most of them have been about needing to step up and take care of myself. I have pretty rubbish immunity. It's nothing to do with the treatment I had, as radioiodine does not affect the white cell count. That means that there's steps I need to be taking to improve my immunity, which means stocking up on vitamins and such! 

I am feeling quite reflective, as I do when we move into a new season. When I think about this summer, it has sort of been a blur of waiting rooms, scans, and blood tests. That gets me down, till I remember that I still had some good times, including my Italian adventure! Also, compared to last summer there was minimal vomiting, which is always a result! 

Even though I am still fighting fatigue (no idea if that will ever stop being a problem) and even though I still don't know whether or not I'll need to go back into hospital, I'm trying my hardest to not let it stop me doing stuff. There's quite a few things happening over the next few weeks, and I'm hoping I can do as much as possible! 

The great sugar and caffeine strike of 2014

Nothing like a bit of hyperbole, eh? It is pretty big to me, though. I was pretty gung ho about it all a couple of weeks, but these past few days I've been having my doubts. I just started to overthink it, which led to me over-complicating it. I started to think of all the things I would miss. What would I do when I wanted something sweet? What would I do when it's cold and I fancy a hot drink? Should I still drink fruit juice? Should I still eat jam? Not only that, but the different options of sweeteners, and things you could have instead of sweets are quite overwhelming. For instance, I was thinking that dried fruit was a great idea (so is normal fruit, but it does not always last long. Fruit can be annoying that way) When I was looking at the different types in the supermarket with my mum, today, I ended up saying to her,"I'm getting so confused!" I did get some dried raspberries in the end. Got my eye on some other fruits, too, but I thought that for now I should stick to a fruit which I know I like!

I just got into a bit of panic, really. Though I know I am doing it for a good reason. I decided I would eat whatever I want in Italy, and not start the sugar and caffeine strike till I got back. So, I did, and now I have a ton of mouth ulcers. I don't regret it, I had some seriously delicious gelato...Not to mention my beloved Miel Pops, the honey and hazelnut cereal I ate everyday! It just confirmed my suspicions. Looking back, a couple of people mentioned had mentioned this very thing-- sugary things caused their mouth ulcers. Really, I should have done this sooner, but maybe I was just in denial, or something. 

To make things easier, and less overwhelming, I felt like I should lay down some ground rules for myself:

1)Avoid processed things.

2)Avoid sweets, and cakey type things as much as possible (could probably stretch to a blueberry muffin)

3) No pop
4)DEFINITELY no chocolate! (Though I have been wondering about dark chocolate)

5)Honey is fine, but go easy on it. Maybe I shouldn't be starting everyday with some kind of honey-related cereal? I finished the stash of Miel Pops which I brought back from Italy, so it will not go to waste! 

So, I can still fruit and things (but not too much pure fruit juice, I've decided) I still have something I bought at a sugared almonds shop in Italy, but I will try and take my time with those. 

The caffeine thing is another thing I'd been enthusiastic about at first, but then began doubting this week. Mostly because I've drunk quite a lot of over the past few days. If it's gloomy and rainy outside, I just want to curl up with a warm drink. When I feel thirsty, I go into the kitchen, with every intention of going for something cold, but then I see the rain on the window and I turn the kettle on instead. That hot drink doesn't necessarily and have to be the cup of PG Tips I'd normally go for, though, and I'm trying to train myself out of thinking that it does need to be. I have started to drink peppermint and licorice tea after my evening meals. At first I was not sure, but it turned out to be delicious! It's a great drink to have after a meal, as well! Both peppermint and licorice are meant to be good for digestion, and it was sweet enough to satisfy that particular craving which you sometimes get after a meal. 

The main thing worrying me, with regard to giving up caffeine, was the possibility of withdrawal symptoms. I have experienced the irritability and headaches that can come from a lack of caffeine and it is not fun. I wasn't fun. I did look up some information about how to do it, and it does seem as though cutting gradually over the course of a few days, is a far better method than just going cold turkey. 

It's going to take so much discipline, and changing of mindsets. What I have to keep in mind, is that it is for my own good. I'm not following some crazy fad diet here. I'm trying to make real, healthy changes, that will benefit me, It's almost like I've caused another smaller hill to suddenly grow out of the hill I'm climbing, but I've put myself on this, and it is all up to me. The "hill-climbing" metaphor maybe all wrong in this context, anyway. If I start seeing it as some horrible chore, I'll probably give up. If I try to think of it as fun experiment, then I won't be overwhelmed at the supermarket, or the health shop. I will just be able to think,"Hmmm, what should I try this week?" As I've probably mentioned before, you lose so much power when dealing with an illness. If you can do anything to feel like you're getting at least some power back, then you do it. This is how I'm doing it. 

Italy fun times and other short stories

I have had a desire to go to Italy for years now. It's always been a dream destination for me. I didn't really care where in Italy I went, just wanted to experience that culture. This past week, that dream came true! I managed to get to Abruzzo with my sister, brother-in-law, and mother.

We'd been planning this trip for months. In fact, I think we probably started planning around this time last year, maybe? However, in the three months leading up to it, we were worried it would never happen. IT was pretty touch and go for a while. At one point, my sister and I were talking about what would have happened if I wasn't able to go and I said that although I would have still told them they could go without me, I would never want to them speak of it around me!

Of course, it wasn't without a few problems. When we arrived, we went to a supermarket next door, and at the point I was feeling slightly dehydrated, tired (we'd been awake since 3.30am) and walking and standing around in the supermarket, I very nearly fainted. There were also some problems with pacing myself, too. I just got so excited to explore that I would just rush ahead of my family, not remembering how tired I can get. Though I must say that these days, I can hold on much longer before fatigue sets in!

So, I did have a few issues with fatigue...Which were my own fault, really. Have I not learned? It did not stop me from enjoying myself. We were able to have experiences, evenly spaced out with naps! This trip was just what I needed. I thought I was going to go crazy if I didn't get a holiday soon. I've been on trips, of course, but I was actively doing stuff on those trips. There was lots of activity, which I did enjoy, but this holiday I truly relaxed. One evening, I was sitting on the couch in the villa, and at first I thought that what I was feeling was just weariness. Then I realised that it wasn't weariness at all. I was relaxed. Completely and utterly relaxed. I didn't allow myself to think about cancer, or any of my health problems. It was just about experiencing something new. I feel like my health is always on my mind somehow. Constantly thinking about hospital appointments, outcomes of scans and tests, blood tests, how to space out my medication during the day. It can get in the way a lot. I did not think about these things while I was away, though (except for my medication. Still had to think about spacing that out) I just tried lived in the moment, for once!

I did contemplate some things. Like changes to my diet, thinking about going back to counselling, wanting to brush up on music theory so I can be a better singing teacher one day. My mind felt clearer, so I think that led to decision making.

I did realise that I am quite an anxious person. Actually I have known this for a while, but I stopped seeing it as a huge flaw, and thought about how to overcome it. I have heard of "going to a happy place" as a mechanism, which I have always found a bit cheesy, but maybe it's not a bad idea? The villa we stayed at had a pool, and just sitting in that pool was so peaceful, and I just enjoyed that moment. That may be my happy place. I think I'll call it my "peaceful place" though, as that sounds a bit less cheesy to me.

I am back in England now, and appointments are once again on the horizon. They're a little easier to face now that I've had the holiday I was so desperate for. In the next couple of weeks I will hopefully get the results of my PET scan. They're having a big old meeting with different medical professionals, and the consultant wants to pass around my scan so they can double check the results. Yes, it's taking ages. No, I don't know why. I have, however, made my peace with the idea of going back into hospital. I still wish this was over, but whenever I get upset about that, I will just go to my peaceful place!

So I went to a support group

Gosh, it was nice to talk about how I felt and have people understand what I meant! It was nice to hear other people's stories, too. Just to you're not alone in something is such a great feeling. 

In all honesty, the leader of the group had such interesting things to say, that I am kicking myself for not taking notes. 

We did talk about diet, and they all mentioned the changes they made, and I mentioned the changes I'd been thinking of making. They all said they'd given up red meat, and I have been pondering on that since. I don't eat a lot of red meat in the first place, but I do love a burger! I also wonder how I would get those missing nutrients into my diet. (Probably with a lot of Marmite...I can do that!) A couple of members of the group said that they eat Quorn instead of red meat, but I've tried Quorn (once during a brief attempt to be a vegetarian, and then again when I was a student and found that frozen Quorn is really cheap)  I'm probably getting ahead of myself, as I still haven't managed to get an appointment with a gynaecologist, but I just like to think about what I could be doing to help myself. Gives me a sense of control.

I think they all said that they'd given up my caffeine, and that is another thing I have been thinking about since. Recently, I've acquired a taste for herbal teas, and I've fallen down a bit of a rabbit hole exploring all the different kinds! It's like a whole new world! (Is that song your head in now? I've done it again, haven't I? Sorry!)  I sometimes joke with friends about having a caffeine addiction, but there have been times when I've wondered if maybe I do have one. I had heard many times before that caffeine withdrawal can cause headaches, and just generally being an unpleasant person, and I had experienced this from *SHOCK GASP* not having a cup of tea in the morning! So that was what worried me. That, and the headaches. Then I realised that I'd gone without caffeine when I'd had that UTI a few months ago, and then again when I was having a weird reaction to codeine/suffering the side effects of thyrogin injections. During that time I drank a lot of water, so maybe I could go caffeine-free? 

Maybe I've had some grand epiphany, or a some kind of wake-up call. Whatever you want to call it, figuring out what kind of changes I can make to my diet, has felt like a nice little project. Something to take my mind off things. In some ways it is quite overwhelming, and I'm one website away from making a Pinterest board to keep all the information together! (Come to think of it, that is not a bad idea) I just want to at least feel healthier. Feel like I'm doing something other than taking medication, to be able to help myself. Also, as overwhelming as it may seem, I have people to talk about it with! Like I said, it's just nice to know you're not alone! 

 

Apologies in advance for the rambling content

Annoyingly, I have not heard anything about the PET scan yet. I really don't what's taking so long. When I asked the nurse at the hospital how long results might take, she said,"A few days?" To be honest, I'm not sure she really knew. I'm planning to call the specialist nurse tomorrow and ask if they're on the system yet. I just hope I don't bottle it. I sometimes feel like I'm being a pain, but at the same time, I have just gone on to auto-pilot. I don't feel like I can really move forward with anything until they tell me what's going on. I'm just, in limbo. Not to mention that it's been TWO WEEKS! Two weeks since I had the scan! Get a shift on, people!

Still waiting on the endometriosis front, too. I received a referral letter for a gynaecology appointment this week and that gave me the necessary information to make an appointment. You get a password and a reference number, and then you have to call a number and they book it for you. However, at the BRI, there's no gynaecology appointments available at the moment. The woman I spoke to on the phone said she was going to give the maternity ward my information, but I still feel like I'm going to be waiting around. I don't really mind, though. I mean, I'm in still in pain (admittedly not as much right now, it just seems to serve as a painful indicator that my period is on it's way!) I just feel like the thyroid kind of takes priority.

I had read something about changing your diet. My friend said that she gave up some things, like sugar, and that really helped her. Today, another friend mentioned that there is such a thing called an "endo diet" which I might look into. I have been thinking about giving up sugar, anyway. Been thinking about it for a while now. Not even just because of the endometriosis. I get chronic, very painful, mouth ulcers. They've plagued me since I was a child, and have never been able to pin-point what causes them. However, I did figure that chocolate aggravates them, and for a while now I've been thinking that sugar does, too! I've been eating ice cream this week, and my mouth has just blown-up with ulcers! I struggled to get to sleep the other night because the pain was so bad, and I just thought,"No more!"

I know that giving up certain foods and ingredients is by no means a miracle cure, but I do want to do anything to I can to ease the pain of the endometriosis, so that I don't have to take even more medication. Also, it may not necessarily stop the ulcers, but if it meant that I could only have one at a time, rather than three or four, I'll do it! (I'm starting to wonder if the endometriosis and mouth ulcers are connected)

The best part of this week was chatting to a friend who also has endometriosis. She is the one who mentioned this "endo diet", and she goes to a support group! There is a support group in my town! They meet once a month, and I am hoping to go to the next one and just get things off my chest. I know I am not the only woman alive who has this condition, but it is still such a wonderful thing to be able to connect with others who have it. It is so so great to be able to talk about how you're feeling, both physically and emotionally, and have someone understand how you feel. Someone who can just say,"Yep, been there!" It's even better if they can say,"Yep, been there, but I did this and this, and it worked!"

These past few years, going through all these traumatic things like losing my dad, getting a cancer that won't just get out of my life, now being diagnosed with something else...I am really realising the value of friendship. How important it is to ask for help, even if that help is just in form of them letting you rant over tea and biscuits (or "whining and dining", as I like to call it) Your friends create a kind of army. Someone to fight with you. In return, I try to be a good friend to them, as well. That may sound obvious, but is easy to get self-absorbed when you go through something like this. Easy to just forget that maybe your friends are upset about something, too.

Phew, that was a bit rambley! There was me thinking I didn't have a lot to say!

An exercise in patience

I'd like to think that most of the time, I'm a pretty patient person. In fact, there's only a few things that make me feel impatient. Slow walkers...Slow internet...Traffic jams when I have a particularly full bladder and/or empty stomach. The biggest thing testing my patience right now though, is cancer. Seriously, if it were a person I would be having an angry rant at it right now, asking it why it was so slow!

I don't even really know why I'm so impatient. I wasn't really given a timeline for how long recovery would take. At least, I don't remember being given a timeline. I think I just assumed that because treatment was only surgery and a couple of rounds of radioiodine treatment, that I would be fine by now. There might be stuff still going on inside me, but I don't look ill. 

Then there's all the waiting! There is usually a lot of waiting when it comes to healthcare stuff. I am currently waiting on my scan results, as well as the referral letter for the gynaecologist. Though admittedly I am less concerned about the gynaecology thing. The results of the scan seem a bit more important! 

Going through this has taught me a lot of about myself. For instance, I have learned that I have a real complex when it comes to situations which I cannot control! (Though I think I started to learn this when my dad was ill) If I find the opportunity to have even the slightest bit of control over this situation, I take it! 

I think we all experience that frustration when we can control a situation. I do need to have some patience with myself (and maybe the many members of the medical staff I interact with) The simple fact is that I cannot always have control. It is hard lesson to learn, and one that I am learning over and over. There'll be an end to this eventually. I just have to keep holding on. 

Me and endometriosis

Since I haven't received the results of my PET scan yet,  I thought I would go off-topic for a moment and talk about endometriosis. It's hanging around in my mind anyway!

These past few days, I have not been in as much pain, and my appetite is slightly better. The pain appears to increase around my period, and trying to ease that pain involved some trail and error. Mostly error, as I tried to find a painkiller which would work. Initially, I was prescribed co-codamol but that stuff did not agree with me. I felt so dizzy and nauseated from just a couple of doses, that it really put me off taking it. Which is a shame, because it did work really well! Ibuprofen works just as well, though, and does not have the same effect on me! 

I do feel a bit inconvenienced by it. As I've said before, I'd only like one part of my body to freak out at a time. I think it is a just a matter of pain management, really. I'm not sure a change of diet could help me. I don't see how it would! I just don't want to have surgery. Firstly, they might be doing further surgery on my thyroid. Secondly, a laparoscopy is not a permanent solution. So, if I did have one, would I be having them for the rest of my life? This is a question for the gynaecologist, though. I am just waiting for the referral letter.

I do feel like it is pretty common, and that makes me feel better about it. I know of at least two people who have it, who I can call on for advice! I just haven't asked them yet...Probably out of stubbornness! I have got to stop being so stubborn and thinking I can do it myself! I simply cannot.

I won't be changing the name of this blog, though! The main focus will always be the old thyroid! (Or lack of it, in this case) Besides, Pandora's Womb sounds like a rip-off of Rosemary's Baby!  

Now then

So, the past couple of months have been pretty crazy. I had my MRI and CT scans in late May. They were all fine, because they were at St. James hospital where the staff are much more efficient. A week or so later, I got the worst UTI I've ever had! It was horrible. It came complete with horrible stomach cramps. Even when the UTI cleared up, this pain in my stomach just wouldn't go away, so I spent June trying to figure out what was going on. I'd say that during the month of June I saw a doctor every week, trying to explain what was wrong. During this time, not only were my pains getting worse, but I was finding it hard to eat as well.

Now, when I had the UTI, for the first few days, I had a bit of trouble keeping food down (I don't think this is even a symptom of a UTI. Just something my body does nowadays) When the UTI cleared up, the stomach problems lingered. I originally dismissed it as my body having a bit of trouble bouncing back. It didn't go away though, and alarm bells started to ring. The pain was hard to explain, but the doctor felt my stomach and saw me wincing, which I think was proof enough. This, coupled with my inability to eat much before getting full, rang alarm bells for the doctor, too. She wanted me to be tested for bowel and ovary problems, including OVARIAN CANCER!! Then she told me not to worry, which was useless, because I already felt like I'd been punched in the head. She sent me for an ultrasound and a blood test, and it just reminded me of being tested for thyroid cancer. Even though there were many things that could be going on in there, the word cancer was just stuck in my head, and I just couldn't help but think the worse.

 When a doctor suspects ovarian cancer, and they send you for a blood test, that blood test is looking for high levels of something called CA125. I didn't have that, thankfully, but obviously something's going on in there so I just had to wait for the ultrasound. While I was waiting to hear about an ultrasound appointment, I was also waiting to hear about the results of my MRI and CT scans. I gave the thyroid specialist nurse a call, just to tell her what was going on, but also casually mentioned the fact that I was waiting for my scan results. She managed to find the letter in the system and read it out to me. She told me that the CT scan showed that the nodule in my chest had not changed. The MRI however, had shown that there's still some cells in the thyroid area. So, I have to have a thing called a PET scan, which is like the most thorough of the scans! Depending on what that shows, I may have to have more surgery. I don't want that. I don't want any of this. I was very upset. I keep getting my hopes up, and then my hopes get dashed. I was so sure this time, and I just feel like I had every reason to think this would be okay. I was still fretting that I might have ovarian cancer, then to be told that my battle with thyroid cancer wasn't over yet, really knocked me sideways. I just knew I couldn't move forward till I got a date for the ultrasound.

 This happened late last week (don't ask me the day, life has become a blur of waiting rooms) Saturday I received a letter about my ultrasound so I spent my weekend just trying to pass the time. I don't mind ultrasounds. Of all the scans I've had, ultrasounds are the least intimidating. They're also the most fascinating to me! The worst part about this, was that I had to drink loads of water, so it was pretty uncomfortable. Despite the fact that I nearly wet myself, the scan went pretty well. The nurse who did the scan thinks (and is pretty certain) that I have endometriosis. She has no idea what my doctor said to me, so I think she was pretty surprised by how relieved I was! I asked her, just for peace of mind, if the UTI was related, and she no. I guess it was just a particularly horrible infection. Maybe I should let it go! (Sorry, if that song is now in your head. If it's any consolation, it is now in mine, too)

 You may be wondering what endometriosis is. I know I did, because I came home and Googled it (I know! I figured it would be okay this time) The good old NHS website informed that endometriosis is a condition where the lining of your womb tears away and sticks to other organs. It's not exactly treatable, but with pain relief, it is manageable. I say it's , "not exactly treatable" because there are some possible solutions, You can have surgery to remove the wayward bits of womb lining, but that does not mean that the problem wouldn't recur. You can also have a hysterectomy, but this is very drastic and I don't want to put my body through that. Not removing anymore organs if I don't have to, thank you! My doctor now has to refer me to a gynaecologist, who will face a barrage of questions from me! Mostly I will be asking for something for the pain...Unless my doctor prescribes something sooner

 The PET scan is next week, and I just kind of want to get it over and done with. I would really like only part of my body to freak out at a time, and the past few weeks and have been stressful, and really got on top of me. Hopefully, we are getting somewhere though, and I guess I have to be more patient. Both with myself, and my body. As much as I'd like to get on with life, my body is saying it isn't quite ready yet, and I have to listen to that. So, keep me in your thoughts, because I've still got a mountain to climb!

An update

1) I saw my endocrinologist last week. She said that my thyroglobulin levels have come down (or my "globs" as an endocrine nurse called them) I still have to an MRI, I guess they want to check that everything is in order. I don't have to see her for another four months, and I probably won't have to have another blood test for another two weeks! 

2)I need to speak to a doctor this week because there's a mistake on my prescription slip. I don't even know why. It was correct, but now, all of a sudden, it is not. There's definitely been some communication between the two hospitals, but that line of communication has not extended to my GP. (Apparently they are behind on their typing at the hospital and that is why. Hopefully they've caught up by now)

3)I didn't know if physiotherapy was having any real effect, then I foolishly went a day without doing my exercises (tsk, tsk) and I really felt the difference! So stiff! 

4)I've been trying to learn how to be more patient with myself. This is just over the course of the past few months. I was given no timeline for recovery and yet I've been getting so frustrated with myself, simply for not being 100% yet! 

5)Calcium levels are crawling up. They do seem to take dip when my immunity levels aren't so good, so I'm trying to keep them up. Another reason to eat better, really!

6)The CT and MRI scans have been booked. They will be at the end of this month, far too early in the morning! (Well, the CT scan is first, and is at 8.45. The MRI is at 9.20, so maybe I'll just have a nap)

I think that rounds it all up nicely! 

The memory jar

So, it is very easy to become a hermit when you're going through something like this. Sometimes the fatigue puts me off taking opportunities. I have needed to find ways to motivate myself. That's where the memory jar comes in!

I had seen on my Facebook that a few people had done this last year, and I felt like I should try it for myself this year. What you do is, you get a jar (preferably an optimistically large one) Then whenever you create a good memory, you write it down and pop the piece of paper in the jar! When it gets to the end of the year, you open the jar and look back on the memories you have made.

It's the perfect motivator, because I forked out for a large jar and now I have to fill it somehow! Obviously I still have to be sensible about which opportunities I take, but this jar helps me think about getting out of the house!

I can't wait to open this jar at the end of the year and reminisce about what I got up to. Maybe by then I will have two or three jars! Till then, I best keep trying to fill this one!

One of Michele's Belles

Veering slightly off-topic for this entry (only slightly), I'm going to take the opportunity to tell you about a lady named Michele, and how I became one of her belles.

Michele is the sister-in-law of two of my friends and last year she was diagnosed with cervical cancer. Earlier this year, she was told that it was untreatable. This hasn't stopped her living life to the full, and being her usual giggly self! I have been in awe, frankly, of how she is facing this. Her bravery inspires me to be stronger. On bad days I think of Michele, and everything she's done in the past few months, and I know I can keep going.

Cancer has a lot of power. Too much power, in fact, and it's easy to feel helpless at times. If the internet has taught us anything, though, it's that it is fun to anthropomorphise things! So what better way to get some power back than to imagine yourself actually chasing after cancer like you're part of some angry mob?  This is what my friends and I are doing this summer. We're teaming up with Michele, and becoming her Belles for the Race For Life! (The 5k, in case you're wondering. 5k at a nice, brisk walking pace, thankyouverymuch)

Of course, at this point I'm going to ask you to sponsor us. You get to help fundraise, but you don't even have to leave your house (though I do recommend going outside occasionally) Here is the link for sponsorship (as well as more information on the incredible lady that is Michele!)
http://www.justgiving.com/micheles-belles We're really close to our goal, but we'd love to absolutely smash that target and fight the evil git that is cancer!

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.

Pesky medication

Oh, that's a nice wall! I'm going to go hit my head against it! Okay, I'm being dramatic. The thing I'm about to talk about is really not too bad!

I had my weekly blood test yesterday, and today I spoke to a nurse today about my results. The calcium levels are crawling up at a snail's pace. I've probably mentioned this before, but a normal calcium level is 2.2. I am 1.86, which is a mild improvement but still not ideal. I have been feeling a bit under the weather, which may be affecting it. The nurse yesterday told me that eating calcium rich foods may not help very much, but I figured it couldn't hurt either, so yoghurt has been purchased and eaten! I think I'm supposed to be upping my calcichew dosage as well, but I wasn't clear on that so I'll have to check. 

During my conversation with this nurse, I asked her about waiting an hour or so between taking my thyroxine. She said I could take the thyroxine at night before I go to bed instead! On the one hand, it means I cam eat breakfast in the morning now, and I no longer have to plan my morning around thyroxine. On the other hand, if I'm upping the dosage of the calcium-related medication then I really ought to come up with some kind of schedule. I did that for a few months when I first came out of hospital, but it sort of went out the window when the dosages were rising and falling so much. (Shame, really. I was doing so well at being organised!)

So, got a little bit of good news today! Now I am far too excited about being able to eat breakfast as soon as I wake up tomorrow!

Pesky Calcium. Part 3

The levels have dropped, yet again. The blood test I had last week showed that my parathyroid glands weren't working at all (I know. I thought they were, as well) This means I have to help my body make calcium, which is probably why the levels are dropping. As well as trying to eat as many calcium-rich foods as possible, I've also had to change the dosages on a couple of my medications.

I'm now on 0.25mg of alfacalcidol, four times a day. That's not too bad, really. The most upsetting part is that I now have to take two calcichews, twice a day. I might only take them twice a day, but each time there's TWO OF THEM!! Don't worry, I have plenty of delicious things on hand to help the medicine go down, as it were. I have asked if there's a different thing I can take, and apparently this is the best thing for me to be on, given my situation. Which is confusing to me, because when I was in hospital after my operation, a doctor said something about the endocrinologists wanting to put me on "syrups". I would like to know what changed their minds, because to me syrup=deliciousness, and I'd rather have that!

It is hard to be upbeat about it. I think the most frustrating part is that these doctors and nurses don't seem to know an awful lot about it, so it's hard to get many answers, and difficult to research. It's like the world of severe calcium deficiencies is still a mystery in some ways. I trust that all these doctors and nurses are doing everything they can though, and I am doing everything I can, as well. I often wish I had a magic mirror that I could use to see inside my body! That would be useful, wouldn't it?

Eating better

So, since finding out that my calcium was very low, I've been trying to take steps to make that better. One step was of course, to raise the dosage of my medication (though as I type this, I'm due to take a calcichew) The other step was to "eat myself better" as a friend put it. So, I've been trying to eat foods that are rich in calcium, but to be honest, I could be eating better full stop.

I do try to have a balanced diet. Trouble is, the scales tend to tip towards the unhealthy foods. I like stuff that is unhealthy, and sorry to say, but I'm an emotional eater. I did not use to be, but I think it started when my dad was in hospital and I, unfortunately, ate my feelings because I didn't know what else to do with them. I got a bit stressed out about something the other day, and thankfully I managed not to turn to food for comfort, but it was really difficult.

New Year, New Start is kind of a cliche, but it's true. Of course, every day that you wake up is a chance for a fresh start, but there's something about starting a new year and saying,"Yeah! New me! Old Me got left behind in 2013! New me loves moderation and doesn't cry into a bargain bucket when things get too much!"

I'm not talking about following some kind of meal plan (though that probably wouldn't hurt) Just making more sensible choices about what I eat. I know what's good for me and what isn't. Of course, there can be "hidden nasties", but it's not like I'm going to eat a raspberry jam-filled doughnut because I think it counts towards my five-a-day!

Frankly, I can't believe that I've only just realised I should start being healthier, but now that I've had this realisation, hopefully I can start forming better habits and taking care of myself. Then maybe I won't feel so run down all the time!

Now, to take my medicine and resist a doughnut.

So much to say

Get comfy, I'm about to bring you up to date with my life.

It's 2014! Yowzers! Time for a fresh start. I am a bit worn out after an action-packed December! I tried to take it easy as much as possible, but December is a month packed with social occasions, and it was hard. I made some sacrifices, but I still did as much as I could. I do know my limits, but unfortunately I have been pushing them a bit.

I was thinking the other day that, even with going through cancer, I still had a really good year. My cancer treatment is merely an ugly ink blotch on the chapter of my life that was 2013. I still had some good times in and amongst diagnosis and treatment.  (Mind you, I don't really remember anything that happened in 2013 before my diagnosis) If I have any regrets from 2013, it's that I definitely didn't take enough pictures!

Even though I have not had it checked out, I think that the vocal chord that got damaged is back to normal, so at the end of last year I bit the bullet and performed again! I was itching to get back out there and get bitten by the bug again, so I went for it. I'd missed a good sing!

It's time to look ahead now. Move on! I've bought a massive jar to fill with good memories, and I will hopefully fill it to the brim! (If anything, I would like to get to the point where I need a whole new jar!)

In March, I will be back up to St. James' for thyroxine injections, then I will take a dose of radioiodine which is much smaller (I won't have to stay in hospital this time, but I will have to avoid children under 16, and pregnant women, for 24 hours) then I have a radioiodine scan. Then, on April 1st of all days, I will have an appointment with the consultant who will tell me whether or not I am all clear!

Yesterday I had an appointment with my endocrinologist. Just a check-up, but over the course of November and December I'd been experiencing a lot of low calcium symptoms, which I'd originally put down to iffy immunity, because it seemed to coincide with colds and such. So, by that logic, I was hoping the symptoms would pass when the cold got better. It also seemed to be affecting my nerve endings, which was making hot baths unbearable! Not ideal in winter...Or ever, for that matter! At any rate, I assumed my symptoms would get better when I did, so it wasn't worth ringing endocrinology and telling them. However, when I told the endocrinology doctor about all this, the look on her face told me that none of this was normal, and she sent me for a blood test. Later on that day, the endocrinology nurse rang me with the news. Now, I think I've mentioned before that a normal calcium level is 2. Mine was 1.68. No wonder I'd been feeling so weird! So, I've upped the dosage of my alfacalcidol ever so slightly (from 0.25 nanograms, to 0.5 micrograms) and per the advice of a friend, I am going to try to eat lots of calcium enriched foods (maybe not yoghurt. I ate so many in hospital I'm not sure I want to eat one ever again!) Hopefully I can level it out now and I won't become nauseous!

I've also been going to Bradford Cancer Support. It is a lovely place! I've had a massage there, and a session with the life coach who is going to help me get things back on track! It's just nice to have a place like that to go to.

I feel like a good New Year's Resolution for me would be to stop neglecting this blog.