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.
Friday, 28 February 2014
Thursday, 30 January 2014
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!
Thursday, 23 January 2014
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?
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?
Sunday, 12 January 2014
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.
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.
Friday, 3 January 2014
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.
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.
Thursday, 5 September 2013
It has been too long!
No exaggeration. It's been a month since the last blog entry. A MONTH! I'm so sorry. So much to say, I'm not really sure where to begin.
I'll start with my holiday in London. I had a great time! Here are some things I did:
1)Went shopping (of course)
2) Ate (of course)
3)Got annoyed by tourists whilst doing touristy things (stop creating long lines! Stop stopping in the middle of the street! Stop loudly eating crisps in the V&A!)
4)Met a friend for dinner (poor thing burnt her fingers on churros!)
5) Saw Duncan from Blue
6)Made mum walk around a theatre with me because it is where The Crippling Of AN Irishman is being shown and I thought Daniel Radcliffe might be in the building.
The only downside was coming down with nausea AGAIN, and being unable to come home on the day we were supposed to because I was too ill. I felt like kind of an idiot though, because, I started that week off feeling a bit tingly but, I really didn't know what to do about it at the time. I rather unwisely decided to take matters into my own hands and increase the dosage of my alfacalcidol and that is what I believe triggered the nausea. I was just getting over a bout of nausea, too. It just wasn't fun. Kind of put a dampener on things, but I did still have fun!
When I came home, I was fine for a few days, but then I was hit with nausea AGAIN! Fortunately, An ENT doctor rang with the results of my CT scan, and I told him about my nausea and explained that no-one from the endocrinology had called me with any results. Good old Dr. Prowse, King Of Getting Things Done, managed to chase them up and they called me with some results! A nice lady from the endocrinology department told me that I was indeed on too much calcium! Quite a lot in fact. The level you should be is around 2.2, and 3 is too high. My level was 2.97 so it was verging on too high! Not only was I taking too much calcium, but I was taking too much thyroxine as well! I was taking 125 mg one day, and 150 mg the next, and alternated depending on the day. Now I only have to take 125 mg each day, which is great because I don't have to keep track anymore! I also now only need to take two calcichews a day (cannot tell you how much joy this news brought me), and instead of taking 1 mg of alfacalcidol twice a day, I'm now taking 0.5 mg of alfalcalcidol once a day. I have to go for a blood test on Monday to check my levels of things on this regime (for lack of a better word) I'm fine with that, because I am pretty positive my calcium levels are slipping. It's taking a very long time to get the balance right, but my doctors are great and seem genuinely concerned about helping me.
Other than all that, I'm okay. I've got my eye on a theatre group I want to join (that makes it sound like I'm watching them from the bushes. I'm totally not). I also got a jewellery making kit, which will get my creative juices flowing and keep me occupied!
That's all I think...I'll try not to leave it so long next time.
I'll start with my holiday in London. I had a great time! Here are some things I did:
1)Went shopping (of course)
2) Ate (of course)
3)Got annoyed by tourists whilst doing touristy things (stop creating long lines! Stop stopping in the middle of the street! Stop loudly eating crisps in the V&A!)
4)Met a friend for dinner (poor thing burnt her fingers on churros!)
5) Saw Duncan from Blue
6)Made mum walk around a theatre with me because it is where The Crippling Of AN Irishman is being shown and I thought Daniel Radcliffe might be in the building.
The only downside was coming down with nausea AGAIN, and being unable to come home on the day we were supposed to because I was too ill. I felt like kind of an idiot though, because, I started that week off feeling a bit tingly but, I really didn't know what to do about it at the time. I rather unwisely decided to take matters into my own hands and increase the dosage of my alfacalcidol and that is what I believe triggered the nausea. I was just getting over a bout of nausea, too. It just wasn't fun. Kind of put a dampener on things, but I did still have fun!
When I came home, I was fine for a few days, but then I was hit with nausea AGAIN! Fortunately, An ENT doctor rang with the results of my CT scan, and I told him about my nausea and explained that no-one from the endocrinology had called me with any results. Good old Dr. Prowse, King Of Getting Things Done, managed to chase them up and they called me with some results! A nice lady from the endocrinology department told me that I was indeed on too much calcium! Quite a lot in fact. The level you should be is around 2.2, and 3 is too high. My level was 2.97 so it was verging on too high! Not only was I taking too much calcium, but I was taking too much thyroxine as well! I was taking 125 mg one day, and 150 mg the next, and alternated depending on the day. Now I only have to take 125 mg each day, which is great because I don't have to keep track anymore! I also now only need to take two calcichews a day (cannot tell you how much joy this news brought me), and instead of taking 1 mg of alfacalcidol twice a day, I'm now taking 0.5 mg of alfalcalcidol once a day. I have to go for a blood test on Monday to check my levels of things on this regime (for lack of a better word) I'm fine with that, because I am pretty positive my calcium levels are slipping. It's taking a very long time to get the balance right, but my doctors are great and seem genuinely concerned about helping me.
Other than all that, I'm okay. I've got my eye on a theatre group I want to join (that makes it sound like I'm watching them from the bushes. I'm totally not). I also got a jewellery making kit, which will get my creative juices flowing and keep me occupied!
That's all I think...I'll try not to leave it so long next time.
Thursday, 8 August 2013
Little victories
Well, I have been dying for a holiday. I just need a break! My only problem is all the appointments I've been having! I just didn't know if I would be able to get away or not.
So I got an appointment to see an endocrinologist (which was today in fact), and a physio appointment. I decided that if I didn't hear about my CT appointment this week, I was off anyway!
However, I managed to arrange a CT scan for tomorrow, and even though I have had to reschedule my physio appointment (because the physio called in sick), it means I can go away!
Ah, a vacation! No talking, or thinking about, cancer...or hospitals...and hopefully I won't talk about throwing up...I just want a break from this madness!
Oh, and the endocrinologist appointment was just fine! They're incredibly efficient in that department! I was very impressed! I still have to stay on the calcichews unfortunately. The doctor said they were the best thing for me to be on, given what I went through. At least all the doctors I've spoken to agree that they're horrible (but what an adorable name for them!)
I still have a mountain to climb. I don't whether I'm still climbing it and meeting obstacles, or coming down it and meeting obstacles. I do know, however, that little victories like these make it all a bit easier.
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