How things are at the moment

Not very exciting. There you go! All wrapped up! Just kidding, there's a few things to talk about. Time for some sub-headings! Progesterone-related chaos Well, not chaos. More like confusion and frustration. Anyway, when I was first prescribed progesterone, the pharmacy at the hospital could only give me a 30-day supply (something which I don't think the gynaecologists know about) Last week, one of the endocrine nurses called me and said that the endocrine doctor wanted to change the dosage of my thyroxine, but it meant that I needed to go get more thyroxine. I was 150mg and now I'm on 175mg. I've explained this before but, if you're new here then I'll explain again: thyroxine comes in packs of 100mg, 50mg, and 25mg. I only had 100mg and 50mg, so I needed to get a pack of 25mg. When I went to see a doctor and sort this out, I knew I was running low on progesterone so I asked for more to be prescribed. It was then that I found out that while there is a record of my initial consultation with a gynaecologist, there is no record of my second appointment with a gynaecologist. This means that there is nothing on the medical centre's system to say that I am on progesterone. The doctor I spoke to was looking at this letter and saying,"It doesn't say anything about progesterone here" and I had to explain that the letter he was looking at on his computer was from my initial appointment. I explained that the second appointment was back in August and honestly I felt slightly like I was being told off. I mean, I know I left it a while to get more progesterone, but I didn't know that nothing had been sent to the medical centre to say that a treatment plan was in place! So, he said that would need to call the gynaecologists and ask them because, although he trusted me, he still couldn't just prescribe the progesterone. I understood that, but even though I had seen that doctor on a Tuesday, I still hadn't heard by the end of the week, and I'd underestimated how much progesterone I had left. I ran out on Sunday. On Monday I called the medical centre to ask about it. I explained the whole thing to a receptionist who paused for ages and then said,"Riiiiiiight...I'll put you on a ring back with a GP." The GP I spoke to was not the one I had initially spoken to about the progesterone, but he was really nice. He said that they had not heard from the gynaecologist yet (not surprised by that) but he could prescribe me another 30-day supply just to tide me over. So, although it is a temporary solution, it is still a solution, and it's always nice to talk to a doctor who gets things done! He did say that no harm would have been done from missing a few doses but tell that to my hormones! My goodness! I have been lightly bleeding so far on the progesterone but the other day I had a full-on bleed and the pains came right back! Also my mouth is filled with ulcers. I didn't think the progesterone was making much of a difference, but I guess I was wrong! The bleeding and pain is wearing off but the mouth ulcers are just stubbornly being in my mouth! I have some stuff to put on the ulcers, but the pain has been making me pretty miserable. My problem with the gynaecologists is that I feel disconnected. With the thyroid stuff, I can call a specialist nurse or an endocrine nurse if I have any concerns or questions. I just don't feel like I have that with the gynaecologists. Everyone in the department is really nice and professional, but I just don't feel like I have the same relationship and level of interaction as I do with the specialist nurse and the endocrine nurses. Diet I have not been successful on cutting out caffeine or sugar. I really didn't want to admit that as I was bit embarrassed, but I also want to be honest with you. I have, however, tried to cut down. Some days I do better than others. Actually, I've done better with the caffeine recently as my stomach can no longer handle anything stronger than tea! A drink like Pepsi is pushing it. You see, when I was first diagnosed with endometriosis it was mimicking the symptoms of ovarian cancer (mostly pelvic pain and feeling full quickly when I ate) More recently however, it has been mimicking the symptoms of IBS. My stomach now rebels when I drink coffee. This is why endometriosis is fairly common but hard to diagnose-- it mimics other conditions. With the sugar, I have realised what I just find too sickly (dark orange chocolate for me, thanks), what leaves a really weird scratchy feeling on my throat, what hurts my jaw from all the chewing. Recently, because of my hormones going crazy and giving me a load of ulcers, I've had to lay off the sugar anyway. It wasn't easy, especially since I'd planned to eat a palmier during this week's episode of the Great British Bake Off, but my mouth was so sore that I just had to pay attention to that and make a sensible decision! Next, I am thinking of taking dairy out of my diet. My skin is so bad and I do wonder if dairy might be the trigger. I'm just a bit desperate. It may not be as bad as I think it is, but new ones are constantly popping up, and I am on yet another pill for it! well, it's antibiotic which I take once a day, and some benzoyl peroxide to put on my face as part of a SIX-POINT system in the morning (I wish I was exaggerating). Thinking of having a dairy-free October and seeing how it goes, but I am still thinking about it and researching it. It might just be that my hormones are still a bit crazy, and eventually the progesterone will settle and sort everything. In the meantime, I just want to try this. When I had to go on a low iodine diet, that was almost a month, so I'm trying to remember if it made a difference. I'm sure it wouldn't be instant, but I guess it couldn't hurt, either. If the antibiotic and the benzoyl peroxide don't work, we'll try a different pill and I'm just flipping sick of PILLS!! If I can find a way to fix the problem without a pill, I'll give it a go. The future Is a scary beast. It doesn't have to be, I know. It's just that I feel in a constant struggle between wanting to move forward in life, and being too scared to move forward in life. I just need to leap really, but I feel like I get close and then I go,"Eeep!" and step back again. However, I really want to be a singing teacher and I need to silence the voices that say I cannot, and the voices that say it is too scary. It is just difficult. ***************************************** That about wraps it up!

Life update

Pills, Pills, Pills A bit like that Destiny's Child song, but I'm talking about pills instead of bills. I feel like I am on a LOT of medication right now, and honestly it does get me down. I'm on thyroxine, alfalcalcidol, calcichews, progesterone, and as of today I am on something I don't remember the name of but it's for my crazy acnefied skin. I feel like it's all kind of necessary, but it's just annoying to have to factor all these pills into my day. Not only that, but I feel the progesterone is doing strange things to my body. I guess it just needs time to settle down but until then I'm feeling a bit miserable, not going to lie. I sometimes feel like I'm not in control of my own body, and that is not a nice feeling. Moving On With Life Or at least trying to! It's something I'm really struggling with. I do know that exciting things can happen when you say yes, or,"I'll do it!" without giving it a second thought, but it's difficult to say either those things when you've been through scary stuff. It's like being a in a tug-of-war with yourself where you really want to move forward but it's like this barrier goes up. The weird thing is, it's like I've out the barrier there. I've built a wall and then run into it! So, I'm trying to do things bit-by-bit. I have spoken to my singing teacher about becoming certified with the Institute of Vocal Advancement (same as her) and as a short-term goal I'm going to try and have ten consistent lessons with her, and also to learn the scales. I have time on my hands in which to do this! I want to be like a baby bird and just...Jump out of the nest and start flying! I Can't Believe It Is September! How strange. I'm going to make an almost-the-end-of-the-year resolution to stop being so hard on myself. I am my biggest critic and I make myself feel so bad about myself! I need to stop doing that! **************************************** That is all for now, I think! I thought I had more to say but apparently I don't! Will be back soon with a much more positive update, hopefully, but sometimes you just need to vent!

I went to Gyno Land again

(I've decided to start referring to these gynaecology appointments as,"going to Gyno Land" because it just sounds so much more exciting that way!) I saw a gynaecologist yesterday. If you don't want to wait too long in the waiting room, I recommend arriving early. I mean, ridiculously early. Yesterday I arrived at the hospital forty minutes or so before my appointment. I sat down and then gave a nurse my letter. She took my letter, then she took somebody else's letter, then she gave that letter to a different nurse and said,"You take her. I'll take this lady." Then she asked me to follow her. I was escorted into a consulting room and less than five minutes later, the consultant arrives. It was a different consultant this time, which I was initially uneasy about. I feel like having a different consultant means explaining everything all over again. Everything was written down in my while, but at one point she asked me something a bit technical and I just went blank. I just stared at her and I was like,"Is that not written down?" She was very nice, though and encouraged me to ask questions (she even offered to take my bit of paper off me and look at the questions herself!) She was nice and straight to the point and I like that in my consultants and doctors. After some recapping, and her leaving the room to inquire about something, she prescribed me with progesterone. I have it, but because I'm relatively pain free between periods I don't have to start the course of it till my next period. The annoying thing was that she asked me when my next period was, and I said I didn't know because they were so irregular. Then she asked me AGAIN when my next period would be. I JUST TOLD YOU THAT I DON'T KNOW, LADY! I have been properly stressing over this. I think I made it into such a bigger deal in my head. No-one ever asked me what I wanted to do with the thyroid stuff. Not that that's a bad thing. I'm just not used to a doctor saying,"What would YOU like to do?" I started doing a lot of research, but that got a bit overwhelming. I was pretty sure of my decision, but as it got closer to my appointment I started second-guessing myself. Admittedly, I am still slightly second-guessing myself but I'll just wait till I've had a few cycles to see how it's worked, and if it didn't then I'll just try something different! Aaaaas usual, I was overthinking it all! This progesterone business will not be as stressful as I thought. I don't have to take them at a specific time. I just have to space the dosages out. If I miss a dose, I just take the next one at the time I would normally take it. If you were thinking to yourself,"But Adele, you HATE having to take a bunch of medication!" You are right. I do. However, after a lot of thought I decided to give it a shot. I might not like all this medication, but I dislike the pain even more! The course of progesterone will be 90 days long, and by the time I'm done with that I'll be due to have another appointment and we'll see if the treatment had any effect. There won't be a scan, or anything. They'll just ask me how I feel. Less rubbish, hopefully!

MORE positive things!

As I type this, I have a headache. It is making me grumpy. I do not like feeling this way so I'm trying to remedy it by making a list of positive things. I might have already mentioned some of these, but it's okay. 1)I found a new voice coach. I am the fifth person she has met recently who has their thyroid yanked out so she knows how to help me. We are worked on getting into my "chest voice" which is basically just the lower end of my range. We're sort of enhancing, for lack of a better word, the lower end because the top end of my range is a bit quivery. (Apparently "quivery" is a word. Spellcheck likes it, but curiously does not like "endometriosis") 2)A lot of my friends and family are doing awesome things and having great opportunities come their way, and I just want to burst with pride! It is just so lovely to watch someone's dreams come true. To see their hard work pay off. To watch as that thing they've been longing for finally comes to them. 3)Mmmm, summertime! I just love it! I love these light evenings so much that I temporarily abandoned this blog to go sit outside, but quickly discovered that it is very windy outside and therefore much too chilly for any of that sitting outside business! On the plus side, the wind appears to have blown the headache out of my head! That's how it works, isn't it? **Science!** 4)I am not just learning what limits are when it comes to fatigue, I'm learning how to be okay with having limits. Yes, it's meant missing out on opportunities which can be disappointing. Most recently I've had to miss out on a voice workshop which I knew would have been great for me but too much for me to take on. There was also a picnic which I was supposed to go on with some friends. However on the morning of the picnic, I woke up later than I'd intended (I prefer to try and wake up naturally. I don't like being shocked awake by alarms) I knew that by the time I'd gone to the supermarket and got some food, got home and packed up everything I wanted to take, and made the journey down there, that I just wouldn't be in the mood for it anymore. When I was talking about this with a friend she said,"It's fine. We're not going to make you do something if you feel too tired!" That made me feel a lot better. I'm learning to make compromises. I'm learning how to be okay with turning things down. I'm learning how to be wise about making decisions. This whole experience has been the biggest learning curve ever, but I guess you don't come out of an experience without learning a few things. 5)I have thought a lot lately about what it means, for me, to beat cancer. I don't just want to be healed of the physical stuff, I want to be healed of the mental damage it's done to me. I have finished therapy now, but I have the tools to help me go forward, as well as a great support system of family and friends (who are pretty much extended family) If I really need to go back to therapy, I know how to go about it. I think that is all. I feel a bit less grumpy now!

Finally saw a gynaecologist!

I encourage you to have an celebratory dance party whilst you read this entry, because I finally saw a gynaecologist this week! I didn't see them at the time I was supposed to see them, and I still had a bit of a wait (take a book. Always take a book) However this time there was a delay of forty minutes or even two hours! The nurse came and got me from the waiting room, and then I did still have to wait a bit longer for the actual gynaecologist. When he finally came in he asked me a few general questions about the situation and my health. The annoying thing was that I had written down some things that I wanted to say but I had forgotten to bring it with me! I tried my best to remember, though. When he was done asking questions, he explained what exactly endometriosis is and all the treatment options. At some point he said,"It seems like you know quite a lot about this already" and I said,"Oh, yes. I have researched this heavily!" (In hindsight, I think I meant,"extensively" not "heavily" but never mind!) There are several different options. There's a surgery called a laporoptomy but that is not guaranteed to be successful. A hysterectomy is much too drastic given that I'm in my twenties. That leaves things like the injection, progesterone, and the contraceptive pill. Those three things each have their advantages and disadvantages, and it's up to me what I do now. That is daunting to be honest, as I was not given a choice with the thyroid cancer stuff. I needed surgery and radioiodine treatment and I need to be on the medication which I'm on to help my body compensate for the lack of a thyroid organ. I've been going on about wanting to have some control for ages, but now I'm being given I don't think I really want it! Not too much of it, anyway. I was saying a few moments ago that I want to choose one of the options and then have the doctor tell me whether or not that is the correct choice. The doctor pointed me towards a website that could help me. It's the website for the Royal College Of Gynaecologists, or something, and it's all sorts of useful information that can help me decide. The gynaecologist wants to see me in a couple of months time and we'll talk about whatever decision I've made. Nothing is finalised but things are on the way to being sorted. Nice and vague! That is my life right now!

That one word

PATIENCE. I've said before that it is my ONE WORD for the year. I often get very impatient with myself and the situation. "Why am I not better?", "Why can't I be in the same place as some of my peers?", "When do I get my life back?" These are just some of the thoughts that have entered my mind way too often. I get frustrated, but I try to remind myself that not everybody's life follows the same timeline. I do not always listen to my own words, though. "Patience is the calm acceptance that things can happen in a different order than the one you have in mind" -- David G. Allen As I have said before, my ONE WORD for this year is patience and, boy, have I been learning a lot about that word this year. I have been learning that sometimes it is okay just to wait on something. Obviously it's a good idea to seek out opportunities rather than just expect them to come to you, but I have seen that sometimes things can eventually fall into place. There's been times when I've felt like I was struggling against the tide, but lately I've just realised that I don't need to. No good comes from struggling. When I was at university I watched Letters To Juliet with my housemates. To be honest, I thought the film itself was terrible, but it is set in various places in Italy, and I remember thinking,"This film is awful but Italy is beautiful!" From that point on, I really wanted to go there. In 2013 I was lying in a hospital bed watching Masterchef and the finalists had gone to Italy. I laid there wondering if I would ever get to go there. It seemed like a pretty out-of-reach dream at that point, and honestly it probably was. Last year, however my dream came true. Eventually it came true. Even when there was a month to go till the trip I was still having doubts but, I just needed to stop struggling. I know I have said before that hard work feels good, but there is a definite difference between working hard and struggling. (If you're taking a drink every time I use the word "struggling" in this post then I am not responsible for your liver or hangover) Similarly, my dream of going on the Harry Potter studio tour came true last week. We have been trying to go for ages now, but it has never worked out. It was just as amazing as I thought it would be! That's all I can say! I am back to having voice lessons. The place that I've started going to teaches a particular vocal technique and you can also learn it from them. Given that I do want to teach singing, and I'd like to do some voice coaching for cancer patients, simply because I think it'd be good people who've had throat, and lung, cancer. They're based out of both England and America, and then I started thinking,"Well, this could be my chance to go to America!" Then, I thought,"Woah, calm down. You've only had one session." Admittedly I've been getting a bit carried away with my things in my head, and racing ahead with possibilities. At least my brain is racing ahead with positive possibilities rather than negative ones! I do sometimes struggle with the way my life is at the moment. It is always in the back of my mind that my life is vastly different from the lives a lot of my peers have. If someone who doesn't see me very often asks me,"What are you doing with yourself these days?" I know that this is a perfectly innocent question, but I sort of feel defensive. I misinterpret it as,"Why aren't you getting on with your life?" The only reason I misinterpret this question is because it is a question I sometimes ask myself, so I am wrongly believing that others are thinking this about me. There are some things happening, it has just taken longer than I would have liked. That is just how life goes sometimes. It is a tough lesson to learn, but I am glad I am learning it. "Patience is a virtue" is a saying I've always known but never really thought about. I am starting to understand it now!

It's been an up and down week

There's been some good things and bad things. Actually one of the things was just a bit disappointing. I'll just get the bad thing and the disappointing thing out of the way first. The bad thing was that I woke up this morning with really bad endometrial cramps. Thankfully they eased off as the day went on. The disappointing thing is that I am now seeing the consultant in six months time rather than twelve months. I received a letter from the consultant saying, amongst other things, that she thinks I'm taking too much thyroxine and need to lower the dosage. So maybe that's why I'm seeing her again six month's time? I don't have to have an MRI scan for another twelve months, though, so that's good. Also, with this new dose of thyroxine is 150mg daily, rather than 150/175mg alternating, which is much easier for my morning brain! On to the nice things! Starting with the charity shop I'm working in now. The manager there is lovely, and it turns out that we have a couple of mutual friends! It was a nice, laidback atmosphere because it was just me and the manager working upstairs and another person downstairs. The other nice thing is that I finally arranged a voice coaching session! It's at a place my friend used to go to. I'd rather go somewhere a friend went rather than having to start from scratch looking for a new voice coach. Also this particular place teaches a technique called IVA and can help someone become certified in this technique, so I might look into that. That's a long-term goal, anyway. Short-term, I should sort out my own voice and get my confidence back up a bit! Other good things have been just having nice bonding times with friends. So, really the good has outweighed the bad this week, it's just that the disappointing news was a bit of a kick in the face. However, I am coming to terms with it and honestly, six months is still a long way away! I don't have to think about it just yet. Plenty of adventures to be having, and goals to be reaching, in that time!

A few positive thoughts

Today I went to therapy. It was my penultimate session and I did confess to her that I'm a little bit nervous about finishing. I said that I didn't want to become dependent on her but that I had been wondering what I'll do without her to talk to every two weeks! She promised not to leave me adrift, but also that after next week we wouldn't book another session unless I felt like I honestly needed it. Even then it would be like a month's time or something like that. She also said that I'm doing really well. A friend said this to me last week. Now, I've got to be honest, and I said this to my therapist, I have not been feeling like I have been doing well. I've been feeling a bit stuck. However, if people are telling you that you are doing well (and one of those people is your therapist) you should probably try and take it on board. It's difficult to see it when you're in the midst of it, but feeling this kind of impatience is normal, apparently. It's going to take a while, but I'll get to a better place! In other news, I got some more charity shop work! Spoke to the manager of the place and I start next Tuesday! I explained everything to her so I'll be working for two hours and doing all the mundane stuff, like tagging items (which I've done before) I will be one of three people working there, including the manager, and I will do some of the boring jobs so that she can get on with her own jobs, and the third person can work downstairs. I have also figured out some things I would like to accomplish this year. I was doing some journalling the other day, and I'd picked a topic on what I'd like to have accomplished by my next birthday. I'm going to be annoying and not share most of those things here, though I have written them down in my journal. I've told myself that if I don't manage it by my birthday, that's fine, but I still feel as though that I am putting pressure on myself if I put it out there in some kind of public forum...If that makes sense? I know, I know...People do not like "vague-blogging" and I'm sorry, but I hope you can understand. However I will share that one of my goals is to at least look around for a new vocal coach. My voice has changed a bit since the operation. It's not too bad, it's just affected my ability to sing high notes, and since I've started singing I've become really aware of it and it was getting me down a bit. That, however, gets no results! So, I'm going to look for a new voice coach who can help me out with it. I think that's it...WAIT! NO! THAT'S A LIE! The last thing I have to tell you about is *internet drum roll* I'M GOING TO THE HARRY POTTER STUDIOS! If you don't know me, then I will tell you that I'm a huge Harry Potter fan and well...It's going to be emotional! I was talking about it with my therapist today actually because I feel like I will cry. They'll be happy tears, but it might me feel a bit tired and I want to have maximum energy for that place! I don't the experience to be marred by me over-exerting myself and getting too tired too quickly. So lots of little breaks will be required as well as me taking lots of deep breaths as I try to take it all in. That is now definitely it. Those are some positive things! Hope you enjoyed!

Couple of updates

Update number one: I saw the consultant yesterday. I was a bit nervous about this appointment. I'm not sure why, but I just felt nervous. All I could think was,"What if it's bad?" Anyway, I get to the appointment and she tells me that the scans look about the same as they did last time, and if the people at the multi-disciplinary team meeting agree, I won't have to see the consultant again for another year! I think the MDT team meeting thing is just a formality as the consultant seems pretty positive. She said,"That will be nice to not see us for a while, won't it?" and I said,"Yes!" I mean no offence doctor, but yes, it will be lovely to not have to see you for a while! Admittedly I was a little bit disappointed at first. I know I've said this before, but I'm always a little bit disappointed when they say something other than,"You're all clear!" Once I thought about it more, I realised that for now, it'll do. It'll be nice not to think about the next appointment for a while. The consultant also pointed out that I have been making progress, it's just slow progress. She told me to think back to two years ago, and when I do that I see that she is right. In fact, two years ago I was still in hospital having had surgery. When I got out of hospital, I needed help with washing and bathing. I even needed help putting a jacket on! I'm still not 100%, but I'm managing to do some things myself. Update number two: So, back in October I was supposed to see a gynaecologist about the endometriosis thing (which, to be honest, has kind of been put on the back burner) I think I talked about this, but I'll say it anyway. When I got to the appointment, I handed in my letter and sat down to wait. After a while, a nurse came out to tell everyone that there would be a 40-minute delay on appointments. A few moments later another nurse comes out and tells us that there's still a 40-minute wait, but because of the amount of patients it would add up to a two-hour delay! She then said that people could reschedule if they wanted to, so I opted to do that (that nurse was very grateful!) That situation put me off rescheduling, and anything to do with endometriosis got put on the back burner. However, one night back in January I got really intense abdominal cramps. I went to the hospital, and the nurse I saw her there made me an out-of-hours appointment. It was at 5.45 in the morning, and by 5 in the morning the cramps had subsided and I cancelled the appointment. So I never found out the cause of the cramps, but I suspected it was caused by this endometriosis and so I went back to my regular GP to get referred to a gynaecology unit again, as well as get stronger painkillers. (By the way, can you tell I'm trying really hard not to refer it as,"MY endometriosis"? I'm trying not to take ownership of it) So, a week or two ago I received a choose and book referral letter, and the GP had written two possible hospitals on it. One was Yorkshire Clinic, and the other was the good old BRI. I'd heard good things about the Yorkshire Clinic, and the GP had written on my letter that the waiting list for that place was much shorter. When I spoke to a couple of friends about it, they recommended that particular place, so I decided to go for it. I mean, I wasn't exactly sure where the place is, but I decided to just book it and worry about the logistics later! I mean, Google would help me with finding the place, right? So, for those not familiar, the NHS has a choose and book scheme which is...Well, it's fairly self-explanatory, isn't it? You go on the website, put some details in (reference number, year of birth, and the password they give you) then you can choose a hospital and book an appointment. However, trying to do it on my phone was a bit frustrating and I realised that doing it on a computer was a better idea. Just as I was about to do this, somebody from the BRI rang! She'd been looking through some files, and I guess she noticed that even though I had been logged into the system that day in October, it wasn't clear if I'd seen a doctor or not. I explained what had happened, she apologised for it, and said I could just leave it with her to sort it out! I know they weren't my first choice, but if someone from the BRI calls and offers to reschedule it, I'm not going to argue! Especially as that might lead to getting an appointment faster than if I would if I'd gone for the choose and book method. Also, it's probably easier to go there, because I know where it is. Also, I think the endocrinologist would like to be able to liaise with the gynaecologist, so going to the BRI would make things easier. We all know what happens when two hospitals should be communicating with each other--they don't! So they are the two positive things that happened in the past couple of days! If I didn't have a raging mouth ulcer right now, I'd eat some cake!

Pacing

The topic of discussion with my therapist today! I explained that I'd found routine difficult because some days I'm just wiped. She had mentioned pacing in a previous session, so I wanted to find out more about it. She showed me some information on it, and explained that sometimes people tend to do loads of activity one day, and then the next day they have to rest. Then they might go on like that during the week. I had been doing this very thing! Spending a day doing ALL THE THINGS and then needing a rest the next day. I had been thinking that that was the correct way of managing it. If have know I'm going to have a day out, I might spend the day before and the day after doing nothing, so I will have maximum energy for my day out. This is totally wrong though. I should focus on doing small amounts of activity with small amounts of rest. To be honest, there have been times where, if I've known I would be out in the evening, I'd rest during the day to conserve energy, but then I would still feel tired after my evening out. So what I have to do is start small with my physical activities, stop when I feel tired, then mark down how long I lasted before I got tired. So, I might do some vacuuming, stop when I'm tired, and see that 15 minutes passed before I got tired. If I'm out with friends, and I get tired, I'll make a note of how long it took before I got tired. I'll record this over the course of a few days (both good days and bad days), then I'll work out the average time, and subtract a fifth from it. From that I will learn what a manageable amount of activity is for me. How long I can go before I get tired. It's going to take time, but I think it's a good start. I was supposed to have just one more session with the therapist, but now that I'm starting with the pacing thing, she wants to extend it slightly to support me. So now I have two sessions left! I'm thankful for that, mostly because next week I see my consultant, and depending on what happens I might really need to see my therapist!

Nourishing and depleting activities

This is something my therapist was talking to me about. We were talking about routine, and working out a schedule for me. She said that every time I do a depleting activity, I should follow it with a nourishing activity. For instance, a depleting activity could be a day at work. Then you might come home and watch a movie, which would be your nourishing activity.

 While talking about this with her, I realised I couldn't call to mind many nourishing activities. However, my therapist had a list! The list included journalling, taking pictures, going on walks...Stuff like that.

Journalling was one of the activities that caught my eye. I did used to do journalling, and I really enjoyed it. I know I've got this blog, but for me journalling is a bit different. It's much free-form. When I blog I feel like I have to think about being cohesive and having a beginning, a middle, and an end. When I'm simply putting pen to paper I can write and write till my hand cramps up! Then I give my hand a quick shake and continue writing! You just can't beat it! So I did want to get back into it but I was slightly stuck on what to write. I've got plenty of notebooks but didn't know what to write in one of my many notebooks. Then last week someone on my Facebook newsfeed had posted some creative therapy journalling topics. I wrote nearly all the topics down in a notebook and I plan on working through them (I think the idea is to share them in a community type way but, I'd rather just take this as an exercise for myself. If you are interested by the way, here is the link: https://junquemail.wordpress.com/journal-prompts-creative-therapy/ )

 Another thing I would like to try doing is colouring or doodling. Neither of those two things were on the list, but I've heard a lot of talk about it being a good way to de-stress. You can even get doodling and colouring books geared towards adults, but I really don't mind getting one which is for children. Colouring is colouring, and doodling is doodling, right? It'll have the same affect no matter what it is!

I know that I talk about starting new things and new hobbies a lot. Or I've set goals and haven't followed them through, but I think these new things are doable! Apparently I would like to de-stress, whilst keeping my mind engaged and expressing creativity, and also giving myself a cramp in my hand!

 Next time I see my therapist, we're going to discuss pacing. I have struggled with getting the balance between taking part in activities and getting some rest. I'm getting better at it, but it used to be that I would either not do things through fear that it would wear me out, or I would really go for it and wear myself out! So it'll be good for somebody to show me how to pace myself and get the balance.

I would just like to feel some sense of purpose and usefulness, but do it without wearing myself out.

Happenings of late

I feel like I only ever write update posts nowadays, but sometimes it is best to just let things accumulate (I managed to spell that word correctly!)

 Scans
I had a CT scan a couple of weeks ago (I think it was a couple of weeks ago. I've lost track a bit) That scan was to check the status of a very tiny nodule in my chest. The scan was very quick. When it was done I thought,"Oh, is that it?" It was around 5 minutes, I would say. They did it on a Monday evening, at Leeds General Infirmary rather than St. James. I don't know why they sent me there but It was fine. When we got there the waiting room was empty so I didn't wait long at all. In fact, I would guess that the whole experience took 15-20 minutes. Just a rough estimate.

 Saturday morning I went for an MRI in the usual place (I don't really know why they did it on a Saturday morning. I just know that the scans needed to be done within a certain amount of time) Before I went for this scan, I made two decisions. The first decision was that I would not take any music to listen to whilst I was being scanned. I could have, and I did last time, but you can't hear it. I think they think it drowns out the noise of the scan, but actually the noise of the scan drowns out the music you've brought with you! Or maybe they allow it because they think it'll put you at ease, but it doesn't because the music is being drowned out by the machine! The other decision I made, the morning of the scan, was to stay in pyjamas for it. It was a Saturday morning, I couldn't wear anything metal (which mostly rules out bras and jeans) I wanted to be comfortable...Pyjamas seemed like the most logical option!

 I felt a bit strange when I came out the MRI. I think it was disappointment? I'm not sure. It was just strange this time because it was so different to the last MRI I had at this particular hospital. Last time, they put this thing on my chest to kind of, hold me still. This time they didn't and I got a bit twitchy. My legs twitched a bit. One of my hands was twitchy. I kept getting itches I couldn't scratch. Well, I had to will myself not to scratch because I needed to be as still as possible. They put a head frame on me like they last time, but last time the head frame had these mirrors in which meant I could see my feet. On Saturday however, that particular head frame, did not have mirrors in. I was fine, but that might have been because I've had an MRI before. They gave me headphones, which lessened the noise of the scan a bit. It was all just very uncomfortable, and I was glad to get out of there, and I would like to not have to do that again for a while! Definitely a wise choice to wear my pyjamas, though, and I would recommend you do the same if you ever have to go for a scan!

Music team:
I had approached the leader of my church's music team a couple of years ago, but after I got ill it got put on the back burner. Actually, it basically got forgotten about for a while. Then when I started thinking about it again, I just felt like it wasn't possible. Standing for long periods of time tends to hurt my shoulders. As well as that, practice sessions tend to take place in an evening, and I was worried I would not have the energy for it. A friend asked me why I wasn't on the team, and I thought about that question a lot. She kept encouraging me and then I eventually went to speak to the team leader again, and then went to a few rehearsals. Now I make sure I have enough energy for the practice in the evening (I did have to lean against a friend the other night, but most of the time I am fine) Also on the days when I'm singing, I take a pillow to church and lean against that during the service. To be honest, I feel like I should should do this every Sunday, as it's very comfortable!

Charity shops:
One afternoon, a friend drove me into town and I went and got a bunch of application forms from charity shops (there's a lot of them where I live) One of the shops did not give out application forms, instead you came in for a little trial run to see how you like it. So I did that and I when I got there I told someone that ideally I should be sat down. I've done it twice now and they are lovely. I'm still applying to another shop as well because I figured that more than one couldn't hurt...As long as it's not too many and I don't overdo it! I think one afternoon at one place, and one afternoon at another should be fine. I hadn't realised quite how much my confidence has been dented. I'm a friendly person and I do like people, but just approaching somebody in the charity shop was a little nervewracking. Also last week when I went to the charity shop, there were two people there who I had not met yet and I was slightly nervous about that. Once I got over that hurdle of you know, saying hi, I felt more comfortable. In fact I was slightly surprised by how easy just saying hi could be. Maybe even inappropriately surprised by how easy it was!

  CBT:
CBT stands for Cognitive Behavioural Therapy which basically means that a therapist helps you change your thought processes on things. I had been ignoring just quite how sad the events of the past few years have made me, but I got to a point where I couldn't. I forget when that point was but gosh did I feel sad! It just caught up with me, and I started to think to myself,"Is this my life now? I think it might be. I think this might be my life now!" I don't need to tell you that cancer is hugely traumatic. I originally typed that it was distressing, but I think that that is an understatement. It really is traumatic. It's traumatic to watch someone go through it, it's traumatic to watch someone die from it, and it's traumatic to go through it yourself. I had just got on with it, and I wanted to be Little Miss Positivity but that meant that sort of accidentally smushing down the bad feelings. It's not even just that I wanted to be Little Miss Positivity, I think part of me thought I wasn't allowed to be sad. Before I started treatment, I thought that it would all be very straightforward and fine, and over by the end of 2013. I thought it would not be the struggle that say, someone with a more aggressive cancer would go through. It hasn't been straightforward, though. There's been a lot of setbacks. A lot of complications. A body that isn't the same as it was pre-cancer. A body which will always need medication to help it compensate for the things it can't do on it's own anymore. It has been very overwhelming at times, but now I've accepted that I'm well within my rights to be upset and angry about it, I am able to reach out to people and get some help. I had to accept something was wrong before I could make it right again.

  What's happening next? 
Not a lot. Well, I have appointments with both consultants this month. I wasn't going to keep the one with the endocrine doctor because I didn't think anything there was any point in seeing both the endocrine doctor AND the consultant, but I spoke to one of the endocrine nurses recently and she said that I should keep the appointment because the doctor is always pretty busy and hard to get an appointment with. I see the consultant at St. James' towards the end of the month, and although I'm not sure if she'll have the scan results, I still feel a bit impatient. I think I've covered everything. The good news is that I am finally working on feeling better emotionally. The struggle has been 90% mental, I think, and I'm finally reaching out to people who can help me! I still want to be a positive thinker, but I think it can help, but I know now that I am allowed to feel sad.

Sometimes I have nothing to to say. Other times there's a lot to say!

I have tried to type out this entry a few times now. When you have quite a few things to say, the words just swirl around in your head and it's difficult to then wrangle those words into a blog entry! I have decided to separate them into sections to make it easier (it was only slightly easier, but I got there!) I'm going to talk about the results of the treatment I had, the fatigue situation, and my medication situation.

Treatment results:
The radioiodine treatment I had back in October did not work. I was a little bit disappointed till it was properly explained to me. You see, it didn't work because the cells in my neck are so faint that they just didn't pick up the radioiodine. Simple as that. Now they just want to observe the cells and see what they do, before they take any further action. The cells will either go away or get bigger, and if they'll only do more treatment if the cells get bigger. To be honest, I'd rather they did that instead of just going full steam with the next course of action. Especially since they said they would possibly have to do radiotherapy if the radioiodine didn't work, and that has a lot of long-term side effects!

Fatigue:
It's hard to properly express just how tired I get. Before the last appointment I had, all I could say was,"Well, I get very tired..." Which is a bit vague and doesn't help a doctor to help me. So I wrote down exactly how I was feeling and vented it to the consultant at my last appointment. I would have done this sooner, but in October I got bowled over by the news that I would need more treatment!

I'd actually called the specialist nurse a week or so before I saw the consultant, and mentioned the fatigue situation to her. She did seem to think it was unusual considering the amount of thyroxine I'm on, and the fact the levels of the thyroid hormone are quite high. I was quite relieved to hear her say that, because up till then I'd been thinking that the fatigue thing was perfectly normal.

Fast forward to the appointment itself, where I vented about just how tired I can get, and how frustrating it can be. One of the actions they took was to increase my thyroxine dosage (which I'll elaborate on later). They also suggested I go back to taking it in the morning and waiting half an hour. For some reason, since going back to this, I have actually found it better! The funny thing is, when I went from taking it in the morning to taking it at night, I kept thinking to myself,"What was I thinking taking it in the morning? It's much better to take it at night!"  However, now that I've gone back to taking it the morning, I keep wondering what I was thinking taking it at night!

After my appointment, the specialist nurse took me to a small Macmillan centre in the hospital, where there all these different information booklets available. I found one on fatigue which had some really good advice in! I think it will be a case of messing with the medication dosage, really. It has been a real test of my patience, that's for sure!

Medication:
They increased the thyroxine dosage from 150 micrograms every day, to alternating each day between 150 micrograms and 175 micrograms. So, this morning I took 175 micrograms, and tomorrow I will take 150 micrograms. I had to do alternating doses when I first came out of hospital, so that bit hasn't been too hard to get to grips with.  I bought a cheap diary to help me keep track. The tricky part is that thyroxine comes in packs of 100 micrograms, 50 micrograms, and 25 micrograms. So on the days I have to take the 175 microgram dose, I have to take one thyroxine from each pack. I've had to write it down in great detail in my diary, just so my morning brain doesn't mess it up!

The dosage was actually increased till last week, and when I received the letter I decided I'd better go see a GP and let them know, so that my prescriptions could be changed (I needed some more alfacalcidol too. Kill two birds with one stone and all that) The great thing about that was that this particular doctor added up how much I would need for a two months supply, and while doing that noticed I was only receiving a one-month supply of alfacalcidol, which didn't make any sense considering I was receiving a two-months supply of all my other medications! So nice to see a doctor who just gets stuff done!

Also, though does it not seem to be a common side effect, my immune system has definitely taken a hit. To help myself with this, everyday I try to take a multivitamin, an effervescent vitamin C (which is a bit like drinking Fanta every morning) and an evening primrose oil capsule. I don't always remember to, but I think that if I forget it's not as big of a deal as if I'd forgotten to take my prescribed medication.




That's pretty much it. As much as I wish this was over, I understand why my consultant is doing what she is doing, and I feel like I'm being listened to, for once.