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.