Radiotherapy

So i've got two more sessions to finish off my 6 weeks of radiotherapy to go today. I'm sorry that i've left it so late but I'll let that be an explanation in itself... I'm not gonna lie (for those of you reading this not yet to have radiotherapy) it isnt all that great. I'm nauseous way more than normal... to the point that even thinking of having any taste in my mouth makes my stomach churn and my mind ready to vomit. My constant state is feeling as if i've been in the car with a really bad driver for a really long time and I just want to sleep whenever I'm awake.

This past week I have overslept nearly every day despite going to bed early the night before. I feel lifeless most of the time and my weekends have been pretty non-existent. I started on Thursday the 13th October (a day after my birthday) and as you can imagine, a big birthday meal meant I didnt get to sleep straight away, meaning my first early morning in about a year was after only about 7 hours of sleep (yes i know to some of you that is a treat but the littlest thing for me feels like 20 times more of the effort than a normal person). I arrived on time into what i can only explain as the coldest waiting room on earth and a lovely lady named Charlie took me into a side room to just quickly go over all the stuff I had already been told. I was then taken into another room where there was a bed exactly like the one i laid on during my mask moulding and told to remove my jumper, shoes, glasses and untie my hair. I laid on the bed while they spoke over me reading measurements that sounded like simlish to me 'touching soup, eleven 7 on the long 16 7 on the height' etc. About 4 weeks later I learnt that one part of the jibberish meant I had even ears (horah!). Anyway. They read out all the measurements of the bed, made sure my collar bone, head and ribs were aligned correctly and popped in my mouth guard and on went my (tight) mask. Then i couldnt tell you for sure what happens after that because my eyes are closed but i think they use a bit of paper to measure the length of my eye or something? I have no idea but i can feel paper brushing my eyelashes and then them calling out numbers. Then they push a button say 'Alright hannah we'll be back in a minute, wave your hand if you want it to stop, we're watching you the whole time' while theres a loud beeping noise until they close the door and the sound of lasers begin. You can't feel anything during the treatment but sometimes I know when the beam is travelling up the right side of my face as I can tell there is light on the other side of my eyelid and my right nostril begins to smell of chlorine. Don't ask me why. Its just what happens.Then they come back inside move the laser around and rotate my bed. They measure my eye again and leave me again. And then its over... off comes the mouth guard clip, off comes the mask and then out comes my mouth guard- often ending in spit all over my face.

The first days were absolute hell. When I stood back up off the bed I felt like i was going to fall over and pass out. I felt like any sudden movement would make me puke all over the room and i dont know if it is possible for any of you to fathom it but my brain felt tired. The journey home felt like a bloody life time and when I opened my door at 12pm I went straight onto the sofa and fell asleep until 7 (and then back to sleep at 10). The next day was pretty much the same and thankfully I was given Domperidone (anti-sickness) the following monday. It helped a bit with the sickness but if i was to tell you i felt fine for the 5 weeks after that I would be lying.

I just really really hope this past 6 weeks (almost) have been for something and I wont need to be the old person I was again. I cant wait... 2 more days before unlimited lie ins but I sure will miss a convenient M&S...

What a Difference That Day Made! *5 Months Post-Op*

Wow! Can you believe surgery was five whole months ago (I know 5 months is not a common milestone but I wrote this post thinking it was 6 because im thick as shit and can't be bothered to delete it)? Time has absolutely flown by. Fair enough I was in hospital for a month of it, the most part with meningitis, but I feel like a different, yet the same, person! When I was ill, as you'll hear most people with cushing's say, when I looked in the mirror I didnt recognise the person looking back at me. I wasn't sociable, which is one of my main characteristics, my features had disappeared and had gotten lost in the size of my face, my skin was spotty and felt tight, I was lifeless and sad all the time and I'd always rather be alone than with anyone else. But almost immediately after surgery I felt like life was looking up. I don't know whether it was from the huge amount of support and encouragement  from family, friends and even strangers that made me realise life wasn't all so bad, whether it was down to the wave of happiness that came with the thought that my struggles and pains would soon be over, whether it was just because the sun was finally shining or whether it was just that timmy was ripped out my head, but life just seemed good again. I wasn't sad anymore, I didn't want to be anyone else, I didn't resent my illness, I was just happy to have my future back... WOW that sounds soppy.

Anyway long story short. I was happy, relieved and optimistic. The journey is not and never will be over, but I was trying to look back (its so easy to forget) because people who havent known me tens of years seem to keep saying to me 'wow you are so different, you seem so much better!' and in my head i just think, 'really? I feel like plain old me.'. As I mentioned in a previous blog post, photos in the last year (2 years now) were a big fat no no. I scrolled through facebook and my phone and found a few 'hidden from timeline's and a couple of selfies i considored alright at the time.

You can see how uncomfortable I was in my own skin. I wont undermine all those fun times but when a camera was out I was soooo done with being me.

Below are a couple of selfies that I remade to see the difference (lol in my pyjamas both pics so clearly havent changed that much):

...Two operations, one meningitis and a whole world of drugs, Mr Nick Thomas, you are my literal saviour. Thank you for bringing me back.

Mask Moulding!!

So I endured an hours bus ride with both my parents on Tuesday morning and went to get my mask moulded at St Thomas. They mould masks for radiotherapy as a marker so you are positioned exactly the right place for treatment. I dont want my brain getting fried and Timmy to live on...

I went down to the Cancer outpatient suite and was met by a lovely woman. I cant really remember what we were even talking about to be honest. She gave me a list of the times I have my treatment each day. They jumble them up to 'keep me on my toes'. Most of them are 10.15 as I asked for them to be late morning so I could still be able to go to work on time. She also told me about the effects of the beams on my skin and hair. She said I may (most likely will) lose hair on my temples and I will get a big dry red patch in the middle of my forehead (YAY). I can't wear skin makeup or any make up above the eyebrows throughout the whole treatment (did you know foundation and things have bits of metal in them?!?!?!) and I was to only use non perfumed and gentle things on my skin and I should try and stay out of direct sunlight. (lol that I care about the trivial things) but after that, radiotherapy sounded a lot less appealing. Aside from that, the only other part of our chat in that little room was when she asked when my last period was and my Dad hit panic mode and immediately began searching for the door knob. He announced 'I think now is my time to leave' and swiftly left (LOL). Oh yeah, and then about half way through our chat she told me she was my lovely friend Nina's aunty. I've heard good things about this woman I hope she can heal me.

Then we were back into the waiting room to be collected for the mask moulding. It was such a surreal experience. Firstly I had to get changed into a hospital gown and take all my jewelry out while a man heated up some water to put a mouth guard mould in. Once it was hot and soft enough i had to bite into it and hold it until he told me to let go. They had the bed I would be laying on during treatment in the room but with no machine. They had to use it so they had the exact measurements of me and noted my exact positioning for how i should be in during the procedures. I had to lay down in a specific place so my bum was at a certain part of the bed where it was raised a bit and they pushed the feet pads up to my feet so they got my height exactly. My head was placed on a little head shaped cushion and my face was angled to a specific degree, measured with a laser. I had to hold on to two batons either side of me that were placed according to my height (I remember I was at 11)... and then the mouth guard went in. They scraped my hair back, I closed my eyes and they placed a warm, damp yellow mesh over my head, clipped it into place, clipped another thing onto my mouth guard (through the mesh) and started moulding it around my nose, eyes and chin:

I layed there for a few minutes and waited for it to harden. Some people say its claustrophobic but while it was still warm it felt like when you open your pores up with a hot flannel... I quite liked it.

He checked it was hard and cool enough before removing it (with the mouth guard, strangely) and let me go back into the waiting room to wait for my CT scan while he handed over all my measurements to the team so they can position me exactly for an accurate representation of where the treatment is needed while I am in the actual radiotherapy machine. Mum left to go to work as she knows what a CT scan is like and doesnt feel the need to be nosy for the next part. When the team came I let my Dad go and get a coffee as my last CT was about 20 minutes. I went in there, they lined me up, put my mask on and scanned me. It was about 2 minutes. grr. I coulda made Dad wait and got a drink (and maybe some buttermints) with him! They let me get changed back in to my clothes, gave me a blue sheet that they can slide me up and down the bed on during radiotherapy (didnt really get the point of that but okay...) and let me go. I waited for Dad in the waiting room and when he came back I proceeded to make him take me to Wagamamas. 

Treatment starts on Thursday 13th October (day after my birthday yay! I told you I dont have good birthdays) and ends on November 24th. I cannot wait for this all to be over with. 

MRI Results and Radiotherapy Meeting

I had a call from Patsy between the time of my day curve/MRI and my Radiology meeting. She said my day curve showed my levels were still too low and I should increase my morning doseage to 15mg and my MRI results were 'what they were expecting' and radiotherapy was still advised.

I went in on the 19th September to meet with the man I'd be under during my radiotherapy. Doctor Ben Taylor. What a man! I loved him!! I couldnt (and still cant) put my finger on it but i really really warmed to him. He was hairy but bald with a friendly face and a very non-patronising manner. He started off by explaining why he thinks radiotherapy is needed. He explained that my Ki67 rating (the rate of cell division/growth) came back as 15 from the biopsy back in May, showing that it was very aggressive. He said normally in a case like me they would expect a rating of 3 or 4, he said anything over 10 should be monitored closely and is aggressive and worrying and he said cancers are 15 or above. Later in the car on the way home I asked my mum why they keep reminding me that I've not got cancer when my tumor seems to have all the characteristics of it... She said the only thing separating me and the big C word is that it can't spread to other parts of my body. I could be sad that I come so close to such a sad disease but honestly i feel lucky.

Ben went on to show me my MRI to help him explain a bit more:

 
So here is my brain. The top one doesnt really show anything of interest I just thought my eyeballs were funny. The bottom one i think is as if you had cut my face off. The two dark circles in the middle are the main arteries supplying blood to the brain. You can see a sideways wishbone shaped dark bit (mass) around the artery on the right (which is actually my left). The doctors said this is probably just scar tissue but it could be regrowth- they would only know if they operated again. Due to its location and the fact it is probably just scar tissue the doctors would prefer radiotherapy.

I will not be having gamma knife (or another kind that I forgot the name of) as those treat very tiny areas and they want treat the whole area in between my brain to be sure no traces of Timmy are alive as he could reproduce rapidly. Ben will calculate the exact amount of radiation needed to kill the area and split it up so I have exactly the right amount each day for six weeks. He explained the reason it is such a long time is because the tumour (and whats left of my pituitary gland, sigh) need a lot of radiation to be killed. If this was given to me all at once, the pathways to the pituitary gland will also be killed (one beam from each temple and one slap bang in the middle of my forehead). The brain itself and tissue around it will repair themselves at a faster rate, meaning we can attack them a little bit every day and every day they will be able to get back to normal. However, the tumour and the pituitary gland is slower, so we can damage, damage again the next day, cause more damage the next day and then the next and so on until it is so damaged it is destroyed.

...Thats the plan anyway. Ben warned me of the risks:
- I could develop cataracts (a grey blurring of sight that can be fixed with laser eye surgery) later in life.
- strokes later in life
- and a small 'theoretical' possibility that I could develop a malignant tumour in the treated area (but not proven)
...I hate that part of the meeting.

I shall have a mask moulded for me in 8 days and radiotherapy shall then commence. And then after that fingers crossed NO MORE INTERVENTION!!!!

Hydrocortisone Day Curve and MRI

My next appointment was on the 2nd September for my Hydrocortisone day curve and MRI. While my previous day curves tested if Metyrapone was blocking the tumour enough my day curves from now on will be testing whether I am taking enough hydrocortisone and at the right time. These appointments were really really unexciting to the point where I can't think of a single thing I laughed at. Oh. Except for the awkward (and long) moment when they told me to take all my jewelery out for the MRI and I had to take out all 11 earrings,  necklace and nose ring one by one and put them in a plastic cup while the lady was standing right in front of me about two feet away with a clipboard in her hand. I still vouch this wasn't my fault because my appointment times had given me a good hour in between to get myself and iced coffee and a packet of mini poppadoms (I LOVE those things!) but they called me and told me to come in sooner. But hey, Im not to complain... as I've said before, efficiency is the way to my heart.

Anyway, day curve. Uninteresting. Went in. Hopped onto my very familiar bed. Froze to death yet again and she popped my cannula in. BP still healthy and cannula went in the magic vein without any problem. Although when she did put that sticky thing on to keep it in place I was apprehensive because the last time patsy took my blood at the GH 'injection lesson' the plaster left a nasty, itchy, blistery rash and I had come to the conclusion i was now allergic to plasters and anything alike (they heal one thing and replace it with another). Never mind, I'd rather have an allergy to something trivial than something that could kill me i suppose...

i know its gross, I'm sorry.

So anyway, the day was the same. Hopped on the bed, had my first set of bloods taken, took a nap. Had my second set of bloods taken, had a nap (you know the drill). By the time it got to about 1 o'clock I could no longer take a nap. I sat twiddling my thumbs as there is no bloody signal and my eyeballs were too tired to read and that was my day curve. Not very interesting (as i forewarned you).

The MRI was maybe even less interesting. I got a call while my coffee was being made saying that if i was nearby they were free. Course I was nearby. Been in the same bloody hospital for 7 hours already. I went to the suite and the said awkward moment happened. The nurses at PIU had left the cannula in for the contrast to be administered for the MRI because they know how hard I am to cannulate making the summary of this appointment is even shorter...

I had my MRI and it was time to go. Normally they would remove the cannula and its sticky bit and put a plaster on but as the day went on i was getting more and more itchy and knew i was having another reaction. As she peeled it off the bloody rash was back with vengeance. The first time it had happened it was just a little bigger than one of those tiny round plasters they put on after a vaccination but this time it was the surface area of those big sticky things they keep your cannula in place with (I wish i knew what they were actually called). I asked her not to put a plaster on so she gave me some gauze and told me to put pressure on the little hole. I took it away and checked if it was still bleeding.... Nope. Time to get my things out my locker and plod on home.

... Bad idea. I stood up and the blood came gushing out (like that time with Kemi in PIU) so i frantically tried to cover the wound whilst stopping it dripping off my arm and onto my clothes. After a little clean up and a bit more time and pressure i really was good to go. Now just to wait for the results....

Even More Drugs

***dont know why this post has moved to the most recent.. should be after CNS follow up meeting and before the Insulin Stress Test***

As Ben, quite simply, explained it to me, your pituitary gland is the main control system for the way your body chemically works. It has 5 responsibilities:

-Production of cortisol- the hormone needed to deal with stress. 

By 'stress' i dont just mean exam worry (although it does cover that too). It means basically anything that isnt what your bodys completely natural state is. Eg. Exercising, squeezing a spot, drinking alcohol, getting the flu, growing etc. It also, along with other things, fuels your organs to operate.

-Production of Anti-Diuretic Hormone (ADH)- the hormone needed to regulate body fluids

It tells your kidneys when to stop filtering into your bladder. Eg. when youre asleep, when youre dehydrated etc. The absolute lack of this is the reason I naturally piss so freakin much. My kidneys were never ever told to stop, so they just filtered and filtered, whether my body needed that fluid or not, woosh out it comes!

-Production of TSH- a hormone to stimulate the thyroid

Your thyroid is responsible for your general metabolism, bone maintenance, muscle strength, heart and digestive functions, regulating body temperature and more. And without it youre likely to be fat, tired and weak.

-Production of sex hormones

These help with your reproduction functioning, they stimulate different parts of the body retrospectively to produce differnet hormones which help regulate your reproduction fuctions eg. Periods for women. They also help with development of sexual characteristics, so determine things like how hairy you are, how big your boobs grow etc.

-Production of growth hormone

Growth hormone isnt only needed to grow taller but it actually helps for body composition (muscle to fat ratio, muscle mass, metabolism of fat) as well as your mood. 

Although all five functions are pretty important to life, the former three are sort of urgent to get controlled. Without any cortisol or your thyroid working, your fuel tank is empty and your body and organs wont have anything to run on and with no ADH youll be peeing out all the fluid inside your body so that you will become dehydrated and just continue to drain yourself. The other two however, arent as cruicial. So I was discharged started on the first 3 hormone replacements (Hydrocortisone for cortisol 3x a day, Levothyroxine for TSH once a day and Desmopressin for ADH 3x a day) and scheduled to begin the other two after being tested as an outpatient.

I dont have a huge desire to have children or periods right now so the testing for oestrogen took a back seat and growth hormone came first. Today I went for my blood test which will indicate my natural levels (i wasnt allowed to take my two afternoon hydrocortisone the day before or my scheduled one in the morning so Id been feeling pretty shit for a while) which they will then use to compare to the bloods they will take on the 29th during my insulin stress test. 

From what i gather, the insulin stress test is basically.... Shit. I, again, wont be able to take my hydrocortisone the day before or the morning of, and they will induce me feeling hypoglycaemic ( hungry, shaky, sweaty, palpitations, headaches etc.) and then leave me like that for two hours whilst taking my blood every 15-30 minutes to see how my body (doesnt) cope. FABULOUS. I then get given some food and am allowed to take my tablets. 

Although the IST isnt barrels of fun, its only two hours and I desperately want to be started on GH. Aiding fat metabolism (not general, so I still get my vitamins from my carrots and broccoli!), letting me build up some muscle and tone, improving my general mood... Whats not to love ??!

... It only comes in the form of daily injection 😫. Although Ive had a change of heart now, people always used to say I should follow in my mothers footsteps and be a nurse but I always pushed it aside and said 'nuh-uh no way' because the thought of syringes freaked me the f**k out. But since this whole saga began and having to be stabbed at like a pin cushion, I have marginally overcome my fear enough to consider nursing and there is no better way to completely conquer it than to make injections and needles a normalised thing. I have gotta start somewhere. 

Ive not really got much to say about the appointment, aside from the fact I felt like absolute shit because i couldnt fall asleep until 3am the night before (also slightly worrying seeing as I hadnt had any hydrocortisone since 8am) and continued to for the rest of the day. It also didnt help that the trainee nurse blasted the air con up and tried to freeze me to death. I didnt actually inject myself during the injection lesson, Kemi just taught me how to mix the powder in the vial with the injection solution and then brought out a plastic pad that she pretended was my thigh and stabbed. 2ml of solution, change the needle to a blue one after mixing and before injecting, into the thigh at a 90 degree angle and retract a tiny bit to make sure youre in the muscle and haven't hit a blood vessel. Sounds simple enough. The lesson was for my emergency hydrocortisone injection (if i cant retain oral tablets eg. Vomming or having the shits or if im in major shock) so im not 100% sure if its the same for the GH too... I hope it is though. I think  I might possibly be able to cope.

Starting Growth Hormone

Hello! Long time no post, I know. Its been a mixture of the fact I've got my life back and that the events weren't very interesting. I am so used to going to the hospital now that I sit down, get called in, do my business (not that kind) and go home...

Going chronologically I guess the first update should be getting started on Growth Hormone. On the 6th September I went in to PIU and met Patsy, one of my CNSs. She took me into the store room (lol) because there was no more space and I was only gonna be a 10 minute stint. I complained of aches and pains (plantar fasciitis and achilles tendonitis BRILL) and she said it could be the Elhers Danlos, could have been how i walk or how flat my feet were and it could have all been going on for a long time and just masked by the cushings. Fantastic news. No longer dying but now in chronic pain ... Grr. She started by giving me a growth hormone goodie bag:
- A freezer bag
- two multipacks of ice packs
- a little case with a (what looks like an epi) pen, and a needle guard
- two boxes of growth hormone cartridges
- a box of antibacterial wipes
- a box of needles
- a sharps bin
- a few leaflets

The info about the growth hormone goes as such: Must be kept in the fridge (allowed out of the fridge for up to 8 hours in a cool bag with ice blocks). Must take out the fridge half an hour before using. Must change the cartridge every two weeks. Must increase the dosage every 4 weeks. And must remember to put all sharps in the sharps bin. Oh and will be delivered (from now on) to my home every 12 weeks (they will change my sharps bin).

What a bloody faff. Although in one of my previous posts I said I hoped the injection was the same as my emergency Hydrocortisone injection, I now do not. My mum keeps trying to get me to practice with some saline but even looking at those needles i want to cry and I have refused until this day... They are SO long and I just cant cope with the thought. The GH injections however are piss easy. It has to be injected into fat so the needle can only be short. Its about a cm long and about half a millimeter wide. Half the time i cant even feel it. I've got all my family (except my Dad of course) and most of my friends to try it. I think the general verdict is that its quite fun actually (except for me when my mum jabs in in like lightning or when Dusty makes me bleed or isnt too fun for Ashley when he doesnt press down on the nozzle so it goes into his eye instead of me).

It was boiling hot on the day I went in and I wanted to wear a light and airy dress so I could get the breeze up my thighs and not combust in the sun but I thought it would have to be injected into my tummy like the blood thinners I received when I was in hospital so I wore jeans... Patsy said its usually injected into the thigh... I sat on the chair in my skin tight black jeans as a little piece of my sweating heart cried.

Anyway, all in all I've been getting on with the injections quite well. I don't use the needle guard anymore as I figured I should get used to injections if I want to work in healthcare... but I have left it out the fridge overnight once, have forgotten to do it a few times and I do sometimes inject it without it being warmed up for 30 minutes but hey ho, nobodys perfect.

Here are a couple of pics (yes it does do a post-event dribble):

Follow Up Appointment with Jackie and More Results!

Next follow up was with my consultant, the Jackster. Literally one of the sweetest women in the world. Also kinda clever too...which helps. At the time of the meeting my IST results hadnt come back so she couldnt update me on whats happening with growth hormone but she did say the blood results which also tested my free thyroxine (to do with thyroid function) showed it was a litttle weeny bit high. So, instead of increasing my levothyroxine, theyve actually reduced it. Turns out that was what was keeping me awake at night. And she also gave me some good news. Infact the best news- not only were my cortisol levels 'a little bit low', they were undetectable!!!!!!! (Which is anything below 30nmls) woohooo! Thats a sign the surgeons worked their magic and got rid of that god damn timmy! Even though it was along with my pituitary gland I am over the moon. There may still be a weeny bit left in the bone which ill need radiotherapy for, its not doing any damage right now and i can lead a normal life without having to worry too much. 

She also approved me to go travelling next year! Woohoooo. So all that money i saved by never going out and being a tramp to pay for rent at uni over the next couple of years is being blown on a big 'fuck it, ive had a shit year' extended holiday. I cant wait. All in all, Dr Jacks is happy with my improvement and is happy to get me back on that road to the good life. (Long live jackie)

Since that meeting ive had a couple of letters through the post explaining my thyroid funtion test results and saying it is advised to start me of growth hormone. I have to be booked in for another injection lesson before i start because, unlike emergency hydrocortisone, this one is into fat (tummy, arm etc) and not muscle. Tbh i cant wait to get started. My muscle mass feels as if its at a negative right now and every movement i make gives me aches and pains. Load me up and load me up soon!!

I also have an MRI on the 2nd September and a meeting with the oncologists (i dont have cancer, its just oncologists deal with radiotherapy) on the 19th to look at and discuss my MRI and book me in for a course of radio. Looks like things should be plain sailing from now on and im finally feeling optimistic about the future (except the fact were leaving the EU but thats a different story).

Insulin Stress Test

When the sun is shining as bright as it is today, what better way is there to spend an afternoon than catching pokemon and updating the blog? (Eating scones and getting a massage maybe?). Im sorry i havent written in a while... Life has been enjoyable and im feel like im becoming the old me again... Actually enjoying things and wanting to get out of bed in the morning (afternoon). 

But health wise the update is jolly good news!!! I went for the blood test i mentioned in the last post about a month ago and the following week i had the all important IST. I predicted it was gonna be 2 hours of feeling shit but i can confidently say that that 2 hours lasted the entire day.

I wasnt feeling toooooo bad because during the wait they had my blood results back from when i was off the hydrocortisone and they said my levels were very low. So seeing as they were going to put my body under stress and cortisol is what your body needs for stress, they only wanted me to skip my 8am hyrocortisone, instead of the two the day before as well. Anyway, so the IST is basically inducing hypoglycaemia (it has nothing to do with testing for diabeties  or blood sugar, its just an easy way of putting your body under stress. When the body of a 'normal' person is under stress, it produces cortisol and growth hormone to compensate and help deal with the stress. I was to have insulin injected into me to zap up the sugar in my blood and then have my blood and blood sugar levels taken at 15 minute intervals to see how my body responds. The nurse said the insulin should take about 45 minutes to kick in and if my sugar levels dropped to 1.7 or below i would need to drink a (disgusting) drink to help bring it back up. She had to be at the end of my bed to keep an eye on me  the entire time but i kept my hopes up...

In the insulin went and after about 5 minutes i started to feel a bit funny- spaced out and weak. Then a bit hungry but then not hungry at all. I was very drowsy (i would normally be being deprived of my 11hours if sleep, but particularly drowsy compared to normal) but my nurse kept telling me i needed to fight the tiredness so i can tell her how im feeling and she can record it. She took my first set of bloods and my sugar levels had already dropped to 0.6. I dont really remember much but mum said they had a sense of panic in their eyes while trying to remain calm and shoving as much of the sugary drink down my throat as they could. I really cant remember much of it at all and to be honest it didnt feel like 2 hours. My mum said those levels are likely to cause you to fall unconsious so maybe the reason it didnt feel like that long was because i was going in an out of consiousness and i wasnt actually even there for all of it haha. Anyway the test finished and after two of the big bottles of the nasty syrup drink my sugar levels wouldnt rise above 2.7. They gave me a packed lunch i had to eat to bring it back up before they could release me but on a scale of 1-1000 my appetite was at about -10. I picked at it a bit and ate half a sandwich and my sugar levels were high enough to go. Mum popped me in a taxi and i went home and slept on the sofa feeling sorry for myself. I dont know if the fact my sugar levels went so low so quickly is an indication of my cortisol or growth hormones but the results shall say... I also had to fill out a questionairre asking questions like 'do you avoid new situations' (yes) and 'do you have trouble maintaining friendships' (no) to help them assess my need for growth hormone. I scored 17/25 which apparently would suggest i was in need. (Wahey! Officially a debby downer 🙄🙄) 

CNS Follow Up Meeting

So yesterday I mustered up enough energy to order an uber to take me to my first follow up appointment (endocrine department). Id baked for the ward to say  thank you and Id been itching to go and drop it off in the hopes that the nurses i actually got to know were on shift and I could get the chance thank them properly instead of telling someone else to pass on the message, so I planned to go half an hour early. I timed it completely wrong and managed to get there about an hour early. And I didnt get to see any of the nurses. It was just the ward clark and the doctor i had to give the chocolates to last time at the nurses desk, so my visit back to the ward lasted all of 15 seconds and I had an hour, alone in a hospital, to kill.

i just went to where my appointment was and waited in the waiting room. My CNS called me in and after a kerfuffle with her having to try and get a last minute MRI for the moany man that was sat in the waiting room next to me via her pink phone (he didnt want to travel to the hospital again for an MRI and wanted everything to be done in the  same day) we began our 'catch up'.

She asked me how I've been feeling, what are the changes ive noticed etc. and I gave her the low down. I've been feeling more and more exhausted as the days go on. Although exhaustion is to be expected when Ive been on overdrive for god knows how long but it doesnt seem right that the exhaustion is increasing. I should be recovering surely ? As in, getting better. I have absolutely no stamina. Once I muster up the energy to start my day, by the time Ive put on some makeup I feel drained and want to go back to sleep. I'm also extremely weak when I'm tired. I often dont take my tablets until I need the toilet and Im forced to get up because, even though the glass and my tablets are only on the bedside next to me, I havent physically got the strength to lift my glass or hold myself up. Theres a window above my bed and when it rains and its slightly open the rain drips onto a strip of my bed. The other night i just lay with my leg catching the ice cold rain in an attempt to protect my duvet and mattress because i just didnt have the strength to pull myself up and reach to close it. I also tremor all the time. 

A couple other things were that I get very hot and very cold very quickly and my skin has got unbelievably dry. 

On my discharge summary in the section about advise for medication the section on Levothyroxine was duplicated. I had two boxes that said 100mg at 8:00 daily. For my other tablets that i take multiple times a day it was either split into a different box for each time, or all in the same box stating all the different times. Quite clear... so I just put the duplicate down to a typo. It only occured to me at the doctors on friday (a boring 'fill me in' appointment, but another hot doctor so i didnt mind) that maybe it meant i was meant to be taking 200mg. I did take two tablets in hospital and i vaguely remember Ben saying he was going to start me on 200 but Levothyroxine comes in 50mg doses too and I cant be sure of what Ben actually did start me on. My CNS said my symptoms indicate my Levothyroxine doseage is too low but she will need to test the levels in my blood before they increase it. So she planned to do it at the appointment I had at the PIU the next day.

Another couple things that I've noticed that are slightly worrying me are 1. I cant sleep at night. Im absolutely exhausted and constantly yawning (not great when youve got nasty ass chapped lips) but for some reason it takes me until about 2am to actually reach the relm of sleep. I lay for HOURS with a floppy body and my eyes closed but my mind just wont switch off. I really hope that reason isnt timmy 💔. And 2. Ive noticed a few unexplained bruises- which is a tell-tale sign of cushings. Only small greyish ones though so Im also hoping thats nothing big or extraordinary to worry about. My CNS said 'but thats normal for you' and inmy head i kinda thought 'but cushings is normal for me...???'. But she didnt seem too worried so i guess i shall surpress that anxiety.

On the up side my skin had cleared up, im less bumpy and most of my dark markings have gone, the whole of me is less swollen and my hair is finally staying in my head!! (Although ionly  have a few months to enjoy that cause radiotherapy is gonna ruin that one for me again. -_-)

Anyway so I was kinda itching to get the meeting wrapped up because I felt as if all life was slowly draining out of me (physically not mentally, im not rude✋🏽). I wasnt allowed to take any hydrocortisone (basically my source of energy) that afternoon or evening and i was already starting to feel it. We swiftly wrapped it up... She told me i wasnt entitled to any benefits (brilliant. I do not have the stamina right now to work and wont be given the chance to work anyway seeing as ive got appointments every other day and ill need 6 weeks off in a couple of months for radiotherapy, but thats life. Most countries dont even have free healthcare so Im just being greedy) and went to get Ben to prescribe me an emergency Hydrocortisone pack in preperation for Kemi teaching me how to inject myself the next day.

Miscelanious Photos

I was scrolling through my photos and came across loads that made me think 'that'd be great to use on the blog!' But alas, im not smart enough to be able to structure my rambles in a way that makes these photos fit in and be relevant... so heres a mix of random photos from my phone relating to my experience:

I would be so tired all the time that i would fall asleep whenever i was still. Lol at the first pic. Not even 2 pages in

This was when i was meant to go out for a friend who i hadnt seen in ages's birthday. I got a headache and fell asleep. Its not the only time that has happened... This is what i looked like when i woke up.

One of my many ever growing bruises....

The buffalo hump

I thought i was so cool having a cannula that I actually took a picture and sent it to someone practically every time i was in PIU. Now I think cannulas are not so cool. Especially not in the foot.

I was also fascinated by the endless vials of blood and drug filled goodie bags. As you can imagine, the novelty has worn off now....

My first experience of the hospital lunch box. It was, and continues to be, brilliant.

This grey cup of tea? Not so much....

When they started me on metyrapone and i got an itchy ass face

Disgustingly itchy and swollen ankles/ legs/ feet

When my legs turned BLUE from my blood pressure medication

But despite it ruining my bottom half, it made my heart work normally for the first time i think ever !

'What i take in a day'

And this was my attempt at 'what i take in a week' but as i was sorting them back into my daily pill pots i realised id missed out some. I couldnt be arsed to sort them all again. 

Apparently I've got cancer. And apparently i hate all junior doctors.

I forgot to include this one on my hospital post. Its just a tray of IV antibiotics...

Lol this was when id been talking to my nurse for about 10 minutes before realising my dress was practically around my waist

Coming home and making a cake

When i ran to my mum cause id just seen how hairy my thighs were (i actually cant bring myself to post that photo and youll thank me for it) she went and bought me a present

My first proper outing!

My dry, crusty lips and cheeks and my furry top lip growing back post-hometime 😭

You'd never believe it seeing my hair dry but yes, this really is all i have left 💔

A pale and poorly day just generally feeling shit.