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!