Let's have a chat and an update

This might be a long one, I don't know. I'll just start typing and see what happens! I had a consultation appointment last week where they said that it mostly looks the same (not better, just the same) but there are some lymph nodes that look a bit bigger than they should be. Only like, two millimetres bigger and still under a centimetre, but they still want to check it. So I have to have an ultrasound, and if they see something they don't like on the ultrasound, then they will do a needle biopsy. I am okay with all of this. I mean, it's always slightly disappointing when the consultants say something other than,"You're all clear" but, that may take a while. For now, I will take,"It all looks the same, except for these slightly big lymph nodes" They don't seem concerned, it's all just a precaution. The thing that really got me was that the last time I had an ultrasound and biopsy, that was the day the doctor doing the ultrasound turned to me and told me it looked like cancer. The ultrasound will be done at the BRI, which is where they did it last time, and I'm just afraid it's going to bring back memories. The consultant at St. James did say I could do it there, but I had to concede that the BRI is closer and easier to get to. Besides, they might not even need to do a biopsy! I feel like I'm in a period of transition, as well as a period of dealing with a few things. I feel like I've got a phobia of moving on. An actual phobia! I had told myself that I would move on once I got the all clear, but I don't know when that will be. While it's all looking the same in there, it's seems now is good as time as any to try to work through some things. This phobia, a simmering anger and bitterness I have from feeling like I've been robbed of something (and probably left over anger from losing dad. I don't care if it was years ago. It still hurts) It's just got to go so I can live. I've got a dream now. A dream to hold on and be a guide for me, and I don't think I ever had that pre-illness. In other news, I am still on progesterone but having my doubts about it. It's sort of doing something, but I don't think "sort of" is good enough. I still bleed (although these days it's not a lot) and from time-to-time I feel some pain. My main complaint and criticism is that it really does a number on my hormones. OOOHH BOY does it mess with my hormones! Break outs, mouth ulcers (though that could also be attributed to some milk chocolate I had a about a week ago) and sadness. Oh, the sadness! It feels horrible. I think I'd like to try the injection though I don't know if that will be better. However I won't know unless I try! For one thing, it'd be easier to go get an injection once a month, instead taking yet another pill. I'm sure I'm overdue to see the gynaecologist actually, but I don't really know what to do about that. Just wait, I guess. Then I'll discuss it. SO those are all things a-happenin' currently! Er...See you in a few months?

2016 is here and this entry is going to be a long one!

Haven't blogged in while as there's not really been anything to report but now I do have some things to talk about. Quite a few things, in fact. That's right! It's time for some sub-headings! Endometriosis and progesterone: To be honest, I have been working on a whole post about endometriosis but it's been hard to articulate everything I want to say without it turning into a massive rant. I could do a bit of ranting, but I don't want the facts to get lost in all that ranting. I could try and do a condensed version here. The progesterone has taken a while to do anything. I am now getting what I have been calling,"phantom periods" where I don't bleed (and if I do, it's not enough to warrant actually using a sanitary towel or anything) but I do breakout in pimples, get some mouth ulcers and feel so, so sad! In a way it's frustrating because at first I could not identify why I was so sad. They'd been making my hormones go a bit crazy anyway. Feeling irritable and/or tearful at times. It means I've had to be careful about what I watch, read, listen to (though I wouldn't say I really listen to anything that would make angry) It means my judgement can be clouded and I have to give myself a while before making a sarcastic comment which might be a bit too bitey. I did by some Evening Primrose Oil with added Starflower Oil today and maybe that will help things. We'll wait and see! Last time I saw a gynaecologist, the progesterone was still taking a while to do anything and she was talking about putting me on the injection instead. I said I wanted to give it more time. Not because of any fear of needles (though I wouldn't say that I love a needle) it's just that I felt like it was doing something. Sometimes I think about the injection, but I'm just not sure. The really frustrating thing is that there are no perfect solutions. Except maybe a hysterectomy, but that is very drastic. Each different treatment comes with a new set of frustrations and side effect (for example, a hysterectomy will send you into nice little menopause!) I'm sure I've talked abut this, but it has affected my diet. In a good way, as it encourages me to try and eat more healthily. Recently I purchased a salted caramel brownie from a certain coffee shop and I didn't know what my body would do so I took it home. I don't want to be gross, so let's just say that taking it home was a very good idea! Dairy, any caffeinated beverage stronger than tea, and really sickly sweet baked goods are the things that tend to irritate my stomach. How do I know which sickly sweet things will irritate my stomach? Well, that's really a trial-by-error thing. Also irritating to my stomach are a particular brand of barbecue sauce, and a particular brand of bread. I hope there will be a solution for all of the endometriosis sufferers someday. Or for anyone suffering from what they call an "invisible illness". For now, I will quite happily talk about it! ********************************** My most recent consultation appointment: Sorry, I couldn't think of a snappier way to phrase that particular sub-heading. It was a couple of weeks ago now and was very productive. I hadn't been for months! I don't even remember the last time I went. Last time before my most recent appointment anyway. I'm sure the answer is in these blog entries somewhere, but it's not important. Anyway, because I hadn't been for months, I felt like I had forgotten how to do everything. It all came back to me when I got to the hospital, but before that I was just standing in the bus station thinking,"How do I get there, again?" I took a list of things I wanted to talk about and they all led to me having a lot of blood drawn, but at least she listened to me! She tested for anaemia but I think that will come up negative. She only wanted to test for that because I said I was still feeling tired, and before the progesterone started doing something my periods had been really heavy, and the combination of those things rang alarm bells for her. I would find a negative result just as annoying as a positive result, to be honest. Just in different ways. If I am anaemic, then that is ANOTHER thing. If it's negative, then it's just thyroid stuff making me tired, but nobody can tell me if the fatigue will be forever. No-one can tell me if the shoulder pain will be forever. That's the thing that bothers me most these days. I'm doing better than I was in 2013, but I'm tired of trying to plan a week based on what will make me tired. These activities which I'm stretching out through the week, I would have been able to fit into a day before I got ill. I hope that makes sense. I realise that feeling tired is all relative, but I do sometimes feel frustrated and bitter by the lack of energy. *********************************** 2016 goals I thought this year I keep the goals slightly vague. I want to take more opportunities and try to say yes to more things. Within reason anyway. I have to walk the line between "no that will make me feel tired" and "NO I CAN'T I'M SCARED!" Last week I joined a choir and had to really push myself to go. It ended up being really great (and will be a good challenge for me because I haven't been in a choir for AGES!) I am glad I pushed myself. It's about knowing my physical limits whilst not putting any mental limits on myself. I also want to be healthy. I feel like everyone says this at the beginning of 2016 because of all the indulging over Christmas, but for me it's mostly because I feel like in the past few years my body has been rebelling against me and I just feel like I'm not in control of it anymore. Some things I can't help myself with and need to rely on medication, but there are things I can do to help myself (which I've already mentioned. Like my diet and such) I do want to find a Pilates class and try to take more walks. Taking up running, or taking a dance class, seems like a bit too much at the moment so nice brisk walks will do for now! I am doing the Photo A Day project on Facebook and Instagram (you can go check it out on Instagram if you like! Search @dellingtonsdewhirst) This is helping me be present in my everyday life, and although every day in my life is not particularly interesting, I'm hoping this project will encourage me to do some fun and exciting things! A bit like the memory jar. This project is a bit harder because sometimes I forget to take a picture of the most interesting thing I did, and then I have to find something else that represents the day! I think once I get past the one month mark with it, I will know if I can carry on throughout the rest of the year. I'm trying really hard to move forward and it is still scary, but I'm taking small steps. If anything, I'm trying not to panic about the fact that I'm 29 this year, and compare myself to my peers. They have not been through the same things as me. *********************************** I think I'm done! Thank you for reading. I am sorry it has been so long. Sometimes I like to store things up and then spit them out all at once (ew. There was DEFINITELY a better way of phrasing that!) Hopefully it won't be as long next time but we never know!

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!