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justinsdaysinthedark · 5 years

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Post #9 - Metotrex-HATE

August 20th: Life’s funny sometimes. When it’s going easy, you cruise through and enjoy all the good times. It’s easy. It’s like playing a video game on speed run. On the flip side, when life’s difficult, time slows down to a fraction of normal. You drag through hour by hour, looking for when some positivity will come.

My past week has been so incredibly tough. I never felt like a cancer patient before, but as bad as it is to say, I certainly do now.

I wrote in my last blog that “Day 10 is when things pick up again volume wise and from them until the finish, I'll basically be on a drip 24/7 and constantly have to be monitored - totally different to these first five days.” My god I couldn’t have been more correct.

Day 10 of my treatment started about 3:30pm on August 9th and was a 24hour chemo drug called Metotrexate. I was on this drip for 24 hours and I had no idea what it was going to do or how it was going to leave me. I do now!

This drug finished around 3:30pm on Saturday August 10th with the aim of it to kill my immune system and blood cells and leave me a walking corpse...and no surprise, that’s exactly what it did.

Last week, starting from as soon as the Metotrexate finished I was so incredibly sick. It’s hard to explain, but I’d definitely take the flu over what I just experienced...and I’m still not through the woods yet. The first few days weren’t too bad, I was simply tired with no energy. I slept during the day and night. I had no motivation to get up, move or do anything. So I didn’t. I slept.

The next few days things started to get worse and worse. Picture this, one day you’re perfectly normal with normal temperatures and heart rates. The next day, your temperature soars above 40 degrees and your heart rate is constantly sitting dangerously between 125-140BPM. This second part was me for the next few days. The scariest moment was last Wednesday when Courtney was here. I was sitting in the seat next to my bed, just sitting. Doing nothing. The nurse comes into do my observations and I start to sweat and feel weak. My heart rate is sitting at 145BPM, temperature at 40.3. I feel like i’m going to pass out, I actually think I do. The nurse demands Courtney to press the emergency button and everybody comes rushing in. This is what was my first of three Medical Emergency Calls (Medcall) for the 48 hour period. It was scary. Fortunately, my resident haematology doctor Adam was working late for whatever reason and took charge of the Medcall. Once I’d ‘come to’ slightly, Adam asked if I could move to my bed. It legitimately wouldn’t have been any more than a metre if that but it seemed like he’d asked me to run three in cricket - something we all know is never going to happen! I got up and staggered across and fell onto bed and by then, an announcement was on the loudspeaker.

“Medcall Adult, Monash Medical Centre. Ward 44. Haematology”

Before I knew it, I had 25 people in the room and was getting hooked up to an ECG machine. It truly was scary for me. Courtney was a trooper though. She stood in the corner and watched what was unfolding. In a way, I think we were both settled at the fact my resident doctor Adam lead it from start to finish. If he wasn’t there, who knows how we’d both have been.

It happened again another two times - both 7am and 7pm the next day. These two were far less scary because I knew what to expect.

At this stage, it’s Thursday August 15 and I am at the lowest of low. My mouth, throat and stomach are ravaged with ulcers. Something I don’t think I was ever going to avoid! I’m not hungry. I can’t eat due to these ulcers and drinking is near impossible.

I’m in incredible pain, all over. I have no immune system or anything to fight infection - which I was obviously getting with all my fevers. The pain team came around to see me and suggested I went on both Ketamine and Oxycodone to help with the pain. I was in no state to argue, so that I did. Boy oh boy did these give me two days of hallucinations though! Spiders climbing across the walls, people surrounding me talking when I slept; it was such a throw around.

All whilst this is happening, my hair is starting to fall out. Something I knew would eventually occur but never expected it to actually happen. It was bad. I was pulling chunks of hair out of my hair and beard. It was surreal. Alas, mum came in to cut my hair and Courtney brought in my razor to give it a shave. Both were tough tasks feeling so unwell, but we got there in the end.

Saturday August 17th around 2:30pm is when I started to pick up a little bit. I was able to sit up out of bed and try and entertain a conversation. Everyday since then has gotten better and better, albeit incredibly slowly. That puts us at today. I’m up out of bed, sitting next to my window writing a blog - something that was a world away a week ago! Only mum, dad and Courtney would understand as they have been there everyday through my lowest.

How am I today? I’d be lying if I said I were great however I’m the best I have been in a fortnight. I still have mouth ulcers and still struggle to swallow tablets and drink water. I expect this to go over the next two days - there’s just one ulcer at the back of my throat that is giving me grief. As a result, I’ve been taking a routine mouthwash three times a day to numb my mouth. The Peter Mac mouthwash, a cocaine based liquid followed by a lignocaine gel. Between these three, I’m able to ‘clean’ my mouth, numb the ulcers and make it bearable to either eat yoghurt and take my tablets - but trust me, it is still incredible tough.

Today marks Day 20 of my 16 Day treatment and as soon as my white blood cells return to a normal count, I’ll be allowed to go home for a few days before I start my next round of treatment next week. Apparently the white blood cells need to be 1-1.5 and mine were at 0.3 yesterday and 0.5 today. Hopefully, just hopefully my bone marrow kicks into gear over the next day or two and I’ll be home towards the end of the week - that’s the goal anyway! I’ve been hooked up to a drip 24/7 for the past 11 days and quite frankly, I’m over having a buddy to take everywhere. I can’t change my shirt so I’ve had to wear the same shirt for three or four days in a row. For those that know me, should know I love being clean. So that’s killed me. It’s also made showering hard, but no impossible. It just depends on my mood. I’ve been here 38 days straight and it’s just starting to get to me. What I’d do for a few days at home is a killer.

I spoke to my Doctor Adam yesterday who advised September 22nd was in the realms of possible for me to get to the fundraiser those closest to me are organising. A day that I’m really looking forward to and I just hope I can make it. Details are below.

That’s about it from me for now, hopefully this explains why I’ve been M.I.A for so bloody long. I have left out a lot of other details and touched over the basic stuff...so just trust me when I say this Chemotherapy and cancer business certainly isn’t easy! Until next time,

Much love.

Juzz xx

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a-mentalhealth-universe-blog · 7 years

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I Miss The Old Me

In my final year of college, aged 17/18 I didn’t really know what I wanted to do with my life. Going to university is what you’re pushed towards these days, pushed by staff at college and in my case by my family. My parents pushed me not on purpose, but it was clearly the future for me that they wanted, I also felt some pressure coming from the fact my two older siblings had been to large universities and gained top degrees. I applied to a number of universities in the North of England despite home being far away in the South West. I ended up with an unconditional offer for one of the uni’s I had really liked the look of and found myself incredibly excited.

Fresher’s week rolled around and it seemed I’d hit the jackpot, I had six flatmates and they seemed like lovely people and the flat next door where also keen to join in. I’m in my third year now and can confirm that two of the guys from my flat and the flat next door have become my best friends. We all went out for every night of fresher’s week and many nights for the next few weeks after that, I can’t remember specifically if it was at the end of fresher’s week or sometime the week after that things became a little strange. I’ve had what I now know to have been small episodes of depression before, but what hit me in those first few weeks was something very new to me. During college I had self-harmed, not majorly or very often, just small scratches in places usually well hidden. It’s not that I wasn’t happy, I was, I loved my college years and I think back on them as the greatest years of my life so far. This episode that hit me early in first year made me long to hurt myself like nothing else. So I did. I’d go on a night out, have a good time and then return to my room and pull out my pen knife and cut across my wrist. The reason why was quite terrifying for me, it is a fairly long story but I feel the need to explain it all so please bear with it. When I finished secondary school I got my first major taste of how cruel life could be, I’d just finished my year 11 exams and felt positively about how I’d done in them, I was looking forward to the summer ahead in which I was going to a music festival with a huge group of friends and my then girlfriend, I was also going away on holiday with ‘the lads’ and looking forward to many parties followed by the exciting prospect of starting college. It was just a few days before the festival and a day or two after my final exam that my parents broke the news to me that my mum had been diagnosed with breast cancer and would be going to hospital whilst I was away on my lads holiday. I can’t explain the feeling that came over me the evening I found out. I did what I often do when I felt down and went for a walk, I’m lucky to live in the middle of the countryside surrounded by farmland, forests and rivers, it was on this walk that I made the realisation that I believe triggered my first episode of depression and has never quite let me free ever since. My mum’s cancer was my fault. This sounds impossible I know and I am also aware that there is no way that what I’m about to say makes it my fault but I still blame myself. A few months before the news about my mum I liked school very much and had a number of great friends but I just existed in that school, I wanted to stand out, be more noticeable or special in some way, maybe in a way that made me more interesting. Then I considered that if something horrible happened to me, or my family, like it does in many films, there would be a happy ending for me as those people in films always go through something terrible and end up being noticed. I was instantly ashamed by this thought, I wouldn’t dream of seeing anyone I love suffer, having now had therapy I’ve been told passing thoughts like this aren’t unnatural. But anyway, I blamed myself and that’s a lot to carry. Importantly, my mum pulled through and has regular check-ups and passes clear every time but that summer was a lonely time, I wasn’t myself at the festival, lost my girlfriend but managed to hold it together for the holiday with my friends. The rest of the summer I isolated myself, for some reason I couldn’t tell my friends what had happened and rather than pretending to be happy and listening to their petty troubles I kept it all to myself. When I got back from my holiday and my mum was in hospital I’d sneak out of my house in the middle of the night, walk through fields in pitch black and lie down under the stars, it was my first taste of true loneliness. During that time and throughout college I had some nightmares of myself with cancer, I’d dream about staring at myself in a mirror, just a few strands of hair left on my head, skin grey and clinging to my thin and fragile body, eyes empty and as grey as my skin. This is the image that came to life when I started uni and it drove me mad. Instead it wasn’t just there in my dreams; I could see it, this ghostly image of myself right before my eyes everywhere I went. It brought back the guilt of my mum’s cancer and made me feel even more guilty thinking I was more worried for me than her, and so I hurt myself, several times. One night, when completely drunk, a flat mate of mine noticed my wrist and had a chat with me, as drunk as I was I let her into a few details and so she took my pen knife and I promised I wouldn’t hurt myself again, the second she left my room I put my fist through a photo frame smashing the glass and tearing up my knuckles, I then grabbed a shard and drove it into my wrist. For one of the first times in years I cried properly, scared of what had happened to me, convinced it wouldn’t end and seeing no solution. I had barely cried when I had found out about my mother, my grief was real but crying wasn’t my solution, that night at uni was terrifying. The next night we went out again and someone had heard that there was a great view of the city at the top of a public car park, so after the club we went up there, I strolled around the edge of the roof by myself and leant over the edge and looked at the drop to the solid tarmac below, I don’t think I need to specify the thought that went through my mind at that moment and, admittedly being drunk didn’t help, but I don’t think I’ve even admitted to myself how close I came to doing the last thing I would have ever done in my life that night. That night I cried again, all night, I spent the next few days alone and knew things had to change. Eventually they did, they improved a bit, truthfully I think I’ve just learnt to live with the thoughts I have.

When university itself started it certainly wasn’t what I thought it would be, I find it very difficult to explain this because I didn’t have a specific idea of what uni would be like in the first place. In a way it just felt no different to me than college, work was presented on presentations and the lecturers would talk about it in more detail than was shown on screen. Assignments were just longer versions of essays I’d already written at college and field trips were managed by staff with clip boards and registers like I’d seen through my whole life. What I’m saying is university itself disappointed me; you’re not treated like an adult any more than a college student is. Obviously the living situation is completely different to what most teenagers have ever experienced, living with people your age, buying your own food and doing everything for yourself came as a bit of a shock to me as I’m sure it does to all first year students.

By Christmas time I realised that university wasn’t making me happy and I really didn’t enjoy my course at all, my attendance was incredibly low because my sleeping pattern was completely ruined and my depression kept me locked in my room and in my bed for hours each day. If you’ve had depression you might understand what I’m saying, everyone’s depression is different but it’s more incapacitating than I could ever explain. It appears as pure laziness but it feels like you’re not in control of your own actions, you wake up in the middle of the day and even if you’re in pain from hunger, desperately thirsty and keen to get up and make something of the day it’s the one thing you can’t seem to do. It’s not like I spent this time on my phone or watching TV, I simply lay there, alone with my own thoughts, listening in on the sounds of the city and envying the lives of those who occupy it with me. Depression is draining, you feel tired despite doing nothing and the thoughts that pass through your mind are truly horrible. I can’t remember a day when a thought hasn’t gone through my head telling myself that I’m useless, worthless, ugly, horrible, boring, and selfish or a day I’ve not felt numb, cold, frustrated, despaired, overwhelmed and empty.

I went through the early stages of dropping out of university and by February was almost a signature away from doing so, not that I’d told my parents anything. The day I went in to uni to make the final decision a rainbow shone over my university building and something felt different that day, a positivity I’d almost forgotten was possible and in that moment something made me stay, at least until the end of the year to give me a chance to discuss it with my parents and let myself get into a better state of mind to make a better decision. So I stayed, passed all my assignments and exams (just), spoke to my parents over Easter (who certainly weren’t pleased) and got ready and excited to be home for the summer. Again something had to go wrong.

I was unwell for a few days before I went home at the end of first year, it was getting progressively worse and by the time my parents came to collect me I wasn’t in a good state. The next day, back at home I went to the doctors who, after a few tests, told me I needed to go to hospital very soon as my right kidney simply wasn’t functioning properly. I spent a terrifying five nights in hospital during which many tests were carried out to specify the cause of my problem, they couldn’t find one from the basic tests and so I convinced myself my nightmare had come true, that I had kidney cancer and soon the ghostly image of myself would become a reality. However I improved, and when I was told I was fine and certainly well enough to go home I was delighted. The pain persisted over that summer so my cancer doubts took months to fade. But it was my time in hospital where I had a weird sort of epiphany that I should continue with university, things could be a lot worse clearly, besides I had no backup plan and no job I wanted to dive straight in to.

Coming out of hospital I had new lease of life, I found enjoyment in so many things that normally go unnoticed, the warmth of the sun, the simple beauty of green fields and blue sky and the sound of birds. I started running and cycling, worked every day I could and I met up with my friends and girlfriend at every opportunity I got. I prayed that things would stay so sweet and I did manage to sustain the optimism into the start of my second year. I arrived at our lovely new house and tried to continue being healthy and happy. I ate well, joined a gym, slept and woke up at regular times and attended almost every lecture and seminar, which was a huge improvement for me. Things were going well and carried on like this for a few months, and although the content of my course still wasn’t exactly lighting my fire I knew that I was getting enough enjoyment out of my life to carry on and get through it successfully. It was then that I was reminded that life could be cruel, not that it was clear how cruel it was being for quite a while, but it turned out that everything was about to change.

I was ten minutes into a lecture and a horrible sensation came over me, light headed, heart pounding, shaking and a feeling of incredibly intense sickness that started in the pit of my stomach and quickly grew, occupying my entire abdomen and then pushed up my throat as if I was going to throw up, I stood up, pushed past people to get to the isle and ran up the steps and out of the lecture doors straight to the toilet where, to my shock I wasn’t actually sick. Being sick has never bothered me at all, apologies for the details but I’ve made myself be sick before when it needed to be done. Confused, still feeling very sick, I stayed in the toilet until the lecture was over, and not wanting to make a scene walking back into the lecture, let alone possibly having to walk out again. Afterwards, my friend brought out my things for me, and I went home, deciding to miss the next lecture and get into bed as clearly I had some kind of bug. I can’t remember specifically what order it happened in, but this feeling of sickness or feelings similar began spreading to other aspects of my life, eating out, the gym, any shop I went to, the cinema, pubs. Everything. This happened over a period of a few months, firstly it occurred in all lectures and by January I practically gave up going, it wasn’t worth putting myself through, I wasn’t paying attention if I managed to stay in the lecture and every time it happened I just felt crap in every way for the rest of the day.

During this time I had another cancer scare, feeling generally unwell for weeks, I’d had a cough for months, I got easily out of breath, felt continually tired and a pain had developed in my shoulder. Rule number one of any illness should be to never search for your symptoms online but stupidly I did and everything I was experiencing seemed to correlate with lung cancer. I was a heavy smoker throughout my first year at uni but had quit shortly into second year so with this history I was only more convinced that once again I was on the path to the ghostly figure of myself I’ve long feared. I went to the doctors and he practically laughed at me when I asked if I may have lung cancer, a response that didn’t fully convince me but certainly made me realise I’m far too hasty to make assumptions. It was then he asked if I had any other issues with my health and I mentioned the sickness feeling I was experiencing in an ever increasing number of situations. It was then I was referred to a mental health professional, deep down I had already figured out this was what was going on with me. The wait to be seen was long as the waiting list to see any mental health worker in this country always seems to be. But to cut a long story short by the time my meeting with her came around I was already aware of what she was going to tell me, I have developed some quite severe form of anxiety and of course there is the depression alongside that. No offence to her but she wasn’t much help, she wasn’t trained for therapy and the waiting list for CBT on the NHS was at least 9 months. Apart from signing me up to an online course there wasn’t a lot that she could do for me, especially with second year only having a few months left.

I slipped back into my old ways, sleep didn’t come easily to me so my sleeping pattern was destroyed I didn’t eat particularly healthily and certainly not regularly. I don’t know if I’m alone in this way but I have an ability to completely hide what I’m going through from others, I could be lying in my room blankly staring at my TV with no hopes of achieving anything that day and then someone could walk into my room and I’d chat enthusiastically and laugh and smile, then they’d leave my room and my face would drop and I’d sink back down into my bed and hide from the world around me. The scary thing is I’m not sure if any of that laughter and smiling was ever real. Near the end of second year I was virtually incapable of eating out, could barely enter any kind of shop without walking out feeling sick, hadn’t been to a lecture or the gym in months or really done anything. There was a month without lectures (not that I was going) at the end of the year where things did improve a little, I forced myself to do a few things like join my friends at the pub and go into shops. I got my assignments done but unfortunately had an exam coming up, I hadn’t tried to get help from university for my problems which was stupid as I could’ve got deadline extensions and possibly a different style of exam. The night before my exam I felt as sick as I ever had and didn’t sleep for one second. Not a problem I’ve ever had before, people used to tell me I was way too relaxed about exams in previous years. I was seated at the very back of the exam hall which helped for some reason as I felt if I had to leave I could do so more inconspicuously. The exam was just an hour long and when writing I was slightly distracted from the feeling I was imminently about to throw up. When the exam was over I had a feeling of pride, I’d done it, if I could get through that surely I can conquer the feeling altogether in all aspects of my life.

A week later came the thing I’d been dreading the most, a week long field trip to the Czech Republic. Once again I didn’t sleep at all the night before but in the morning I felt a bit better, I was okay on the day of travelling which included long coach journeys, the airport and being on the plane itself, all things I had assumed would really be a problem for me, the night we arrived I even at some food in the hall with everyone else on my course. I couldn’t believe how well it was going, the next morning I ate breakfast in the hall again along with everyone else and almost felt excited for the next five days. Then we all had to sit and listen to a lecturer walk us through the details of the days excursions, five minutes in the feeling that I was going to be sick came out of nowhere and felt so incredibly real once again I couldn’t resist getting out of that room. Rather than walk you through all the details I can confirm that I didn’t stop feeling sick for a significant amount of time at all for the entire week. I assumed I must surely be genuinely ill; normally I could eventually get comfortable in situations to the point where I could just about manage. However, as soon as we got home and I had a meal in my own house I felt fine. That week in the Czech Republic my anxiety meant I missed out on all of the education each day and all of the fun in the evenings, I barely ate, barely slept and felt utterly miserable. I never knew that it was possible for anxiety to take hold of someone for an entire week, this sent me to the worst point my anxiety has ever been. I couldn’t do anything, I was going home for summer soon and hoped that wouldn’t be so bad as anxiety wasn’t something I associated with life at home but within days it was clear I was wrong. If I was in my girlfriend’s house and one of her parents came to stand in her bedroom door to have a chat I’d feel sick, feel trapped and helpless. We went into town to go shopping and I felt sick before we’d even left the house, I couldn’t go into the smallest shop without feeling sick. I couldn’t eat at my own dinner table if my parents had friends over.

This is what university has done to me, I’m not saying it’s fully universities fault as clearly this isn’t a problem faced by most students but certainly the whole university environment had something to do with it. In school and college I was never the most popular but I was always up for doing anything, especially if it was a laugh, I wasn’t afraid to make a fool of myself in front of people. I could make jokes in class and talk to anyone, go anywhere even if I knew nobody, now I can’t even go to a small and quiet pub with my friends.

As I said, I’m in my third year now, wishing I could go back in time and drop out half way through first year to potentially avoid any of this anxiety rubbish. I haven’t fully enjoyed anything I’ve done for almost an entire year now as I’ve either had a full on anxiety attack, mild panic feeling or I’ve at least had it nagging away in my mind, never letting me be free. It controlled me completely for a little while, and I don’t know if I’ll ever be fully free. I told my parents about my anxiety early during the summer, they were great and got me to go to a therapist and I made real improvement over the summer, I could go and eat in certain small places, go into shops and pubs and never feel fine but I could usually cope, as great as this is as I’ve missed it so much it’s so far from where I want to be. For the majority of the summer I was quite positive, getting to do things again was great and I got back into routines. I returned to uni in quite high spirits, after everything I’ve started to overcome maybe I can get through this year reasonably well. Lectures have been running almost 2 months and I’m afraid to say I haven’t attended a single one. I really did try, but I’ve never even got past the door. I’m just living with one other person, my best friend, who is very motivated for his course and spends much of his time on his work, I don’t blame him for this at all, it’s just a shame as it leaves me with many hours spent alone each day. I’m feeling very low, thankfully I’ve gained the strength not to hurt myself despite quite a strong longing to do so sometimes. But the scars on my wrist will be a constant reminder throughout my whole life that I didn’t always have this strength and that I do have the ability to hurt myself. The main reason I refuse to do it again isn’t for me, it’s for others, hardly anyone has spotted my scars as I’m incredibly careful but those who have are more hurt by them than I ever was, and hurting other people only makes me feel worse about myself.

Why do I feel so bad about myself I’ve been asked? I’m spending £9,000 a year on uni fees to stay in my room and do nothing, I’ve received lots of help now and haven’t really made much important progress, so I’ve let the people who have tried helping me down, including my parents who paid for my therapy at home. I feel like somehow I brought all of this upon myself, it took me a while to figure out how, but during my therapy over summer I was subjected to some hypnotherapy where my counsellor tried to make contact with my subconscious thoughts, ultimately she was trying to figure out what caused all of this, when speaking to me there was supposed to be a voice in my head telling me the answers to her questions. No matter what she asked me or said to me all that little voice in my head ever said was “because you deserve this”. Why I subconsciously think I deserve to suffer in this way I’m not entirely sure but I assume it’s punishment for my mums cancer which I hold responsibility for and seeing as I don’t have cancer myself, despite my regular scares, this is the format of punishment I’m getting.

One of the most annoying parts about my anxiety is that I know I’m not going to be sick, of the dozens of times I’ve had the feeling I’ve never been sick, so people have said to me well if you know you’re not going to be sick what’s the problem? Well the problem is they’ll never understand quite how horrible the feeling is and the body and the brains instincts when you feel like you’re imminently about to throw up is to get out of there. Besides it’s not just the sickness, it’s the racing heartbeat, the sweating, the shivering, the light headedness and the ringing in my ears that make it all the more difficult.

Undoubtedly though what scares me most is the thought that I may never get the old me back. I don’t believe I’ll ever completely budge my depression, but right now I would do anything just to be free from my anxiety. When it was just depression I could go out and get some relief from it, escape from it even if just briefly and came in waves meaning there were times I was free. My anxiety hasn’t loosened its hold for one second since it became severe.

#depression #anxiety #mental health #mental illness

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rochellebuckleyhandmade · 6 years

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This is another post where I just don’t know where to start.

I feel it is important to give you a little background so you can appreciate the enormity of what I’m about to share.

For those of you who don’t already know, I have acromegaly. A rare pituitary tumour that causes all sorts of grief and problems (I’ll expand more on that in a later post). I think it was about 2007 when my diagnoses was finally confirmed. I say “I think” because I have a dreadful memory. I like to blame the tumour for that one.

It was long before my diagnosis that I knew something was wrong. I don’t know how long the tumour had been living quite comfortably on my pituitary, some specialists believe it may have nested either after the birth of my first born or shortly after the birth of my second. There’s no way to know for sure. My first child was born in 1995 and my second was born in 1998 so it may have been around for some time.

I remember struggling terribly with depression and anxiety which really began or esculated after the birth of my first. It was really bad, although there were extenuating circumstances, every medical professional I sought help from told me to suck it up and be grateful for the beautiful little girl I held in my arms. Not even a mention of post natal depression. I can’t help but wonder now if that tumour may have been responsible to a small degree.

As the years ticked by, the depression esculated exponentially and there didn’t seem to be much I could do to stop it or even ease it.

By the time I was working I had piled on a stupid amount of weight but I didn’t understand why. My joints began to hurt, I ached all over and I was always tired. The job I had at the time was managing a not-for-profit that mainly provided free or low cost groceries to those who needed a hand up. The store was located in an industrial building with concrete floors, tin roof, no heating, no cooling and not much of anything else either. Although I only worked two and a half days a week I was always exhausted, increasingly tired and so, so sore.

Me almost at my heaviest of 253kgs

I tried for years to tell my doctor there was something wrong with me but again, I was told I was just too fat and needed to lose weight. Problem was, I couldn’t lose weight. I tried everything, every diet and exercise known to man at that time. Exercising became just too hard. The pain of simply walking was unbearable. I begged my doctor to help but again and again I was told I was just too fat.

I tried to continue living my life but I couldn’t. I had to quit my job because I could no longer walk, stand or get any relief from the pain.

I finally decided to see another doctor and I remember at one stage telling him that I’m not aching because I’m fat and weight bearing. If that were the case, why did my hands, wrists, jaw, neck ache and burn and hurt so much especially since they’re not weight bearing.

To cut a long story short, my doctor could see that I was very unwell, despite every test returning negative results. It was so disheartening and depressing. Why was I like this? What on earth is wrong with me? I began to think it was all in my head. Was this something I’ve subconsciously created to overcome past hurts and failures? Surely past stress couldn’t manifest into something this bad.

Finally, in 2007 I received a diagnosis. Acromegaly. I sat in my endocrinologist office and wept tears of relief. To know that it was not in my head and there really is an illness was one of the biggest reliefs of my life.

I travelled from Lake Macquarie near Newcastle to Adelaide in September 2010 just one day before my 36th birthday to have the tumour removed. It was such an adventure. I loved seeing more of this beautiful land in which we live and although I was incredibly ill, I remained wide eyed and completely enthralled on our journey.

Here I am in Rundle Mall, Adelaide just one day before surgery to remove pituitary tumour. I had a craving for fresh oranges at the time.

By the time I was ready for this surgery I was quite unwell. My weight had ballooned to over 200kgs (223kgs to be exact, that’s 492lb or 35 stone). I had lost the feeling down my left side, I could barely speak, partly due to swelling of soft tissue and I could not walk unaided. My vision was deteriorating rapidly and I was struggling to see. My hands stopped working and I could barely even feed myself. The tumour had wrapped around my carotid artery and invaded my cavernous sinus. The surgeon was convinced he would NOT be able to remove it entirely. I could no longer drive and I was forgetting everything. I even forgot how to cook and I had almost no memory of my past. I used to spend evenings with my sister as she regaled me with tales of my children growing up because I just couldn’t remember. My mind was empty.

By this stage I had been receiving monthly injections of Sandostatin LAR or Somatuline Autogel for the past three years (from the time of diagnosis until surgery). Gee did this stuff made me sick. My stomach hurt all the time, I would spend a considerable amount of my day on the bathroom. My hair fell out, my skin hurt, and I had a collection of cricket ball sized lumps on my rump at injection site that would become very bruised, itchy and lasted about three months each.

I felt like crap constantly.

The tumour was removed successfully and entirely by Mr Santorenos. Despite being told that I would not make it through surgery, mainly due to my morbid obesity, I’m still here to tell my tale. We were told, since I was so over weight and so ill, I could expect to be in ICU for up to six weeks and another twelve on the ward and in rehabilitation – that is of I even survived surgery and didn’t have a heart attack or stroke.

Here I am back on the ward after leaving ICU. You can clearly see the fashionable nasal tampon, vomit bag and towel to try to relieve my thumping migraine.

I was out of ICU within 12hrs and discharged from hospital five days later.

Then my challenges began. Again. My recovery was incredibly slow, arduous and painful. Regrettably I thought that everything would just go back to how it was pre-tumour. Oh how wrong I was. Why didn’t someone tell me it would be so bloody hard? I spent the next twelve months flat on my back in bed. I put this down to over doing it after being discharged from hospital. We traveled home via the Great Ocean Rd from Adelaide to Newcastle. It was stunning, breath taking and totally divine, but I had diabetes insipidus as a result of surgery. Cerebral fluid was leaking from my nose and every time we climbed a small hill in our car my nose would bleed and leak fluid, not to mention my smell and taste had gone after my olfactory glands had been damaged during surgery. This meant I would never smell or taste again. Something that I would have appreciated being told about pre-surgery, even if just to psychologically prepare.

The beautiful Loch Ard Gorge on the Great Ocean Road. I managed to kill my good DSLR on this trip. Just being sick and clumbsy.

Just at the end of my twelve months of being too ill to get out of bed, where my children had to feed me, toilet me, do all of the housework and everything in between, my husband left. At the time, I never saw it coming. I went into shock, my blood pressure went through the roof and as a result I lost my eyesight. Completely. No one knew if it would ever return. It did three months later. Not only did it return but some four years later, my eyesight (an astigmatism and shortsightedness) has improved so dramatically I need to get a new prescription every twelve months. My optometrist believes I will not need my glasses at all soon.

There has been so much that has happened between then and now. Challenges, crap, really tough times, including an horrific single car MVA just over twelve months ago in which I broke my neck in two places, my collarbone, five ribs and a bone in my ankle. I’ve struggled terribly with depression and anxiety and have found it very difficult to hold down a job with the chronic pain I experience.

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Me in hospital trying to walk again after my accident

I recently left the job of my dreams. I was so incredibly crushed. I loved the job, my work, the people, clients, my boss and my colleagues. Unfortunately the workload became just too much and my body and brain could no longer cope. It just did not end well and I went into shock and commenced another cycle of grief. I am incredibly thankful that this cycle did not last long, thanks to my family and wonderfully amazing and supportive friends.

I can’t deny that my life has been pretty darn challenging but I am here to give you all hope and hopefully joy in your heart.

You see, whilst I was laying in that hospital bed in Adelaide some five and a half years ago, I started a rather rudimentary bucket list. In all honesty I never, ever believed I would be able to check any items off my bucket list, given my health challenges and my lack of financial stability (due to being unable to work for so long and fork out on medical expenses).

A few weeks back, I experienced a few events and read some stuff that has really given me a kick in the pants. This was a culmination of events, including my beautiful boy being beaten by an unknown drugged young man, a friend posting an interesting letter written by an 18 year old to his father and a blog article that, along with a few other things have combined to change my life for the better.

As a result of these events and with enormous thanks to my amazing, supportive, encouraging friends and family, I am beginning to see my bucket list come to fruition. Please remember that I have been told time and time again that I would never walk again, by now I should have been confined to a wheelchair at best. I should not be able to talk and I would be incredibly lucky to have survived beyond my 38th birthday. This year I will celebrate my 42nd birthday and between you and me, I plan to celebrate many more.

Well, I am here to prove those doctors and specialists wrong and offer hope to my fellow Acromegaly sufferers, those who battle mental health, those who can’t find the strength to go on. You can do it. You really can. If I can negotiate my way through this thing we call life, so too can you. Please, I implore you, DO NOT GIVE UP, EVER!

So what is it that I can share here with you today that I have checked off my bucket list?

Wait for it….

My dear friend took me skydiving!

Yes, you heard right. Skydiving.

Now, to most of you this may not be such a big deal, but for someone with a chronic illness, someone who has battled anxiety, panic attacks, depression and bucket-loads of self doubt, Someone who is completely terrified of heights and even more so of flying, this is MASSIVE!

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Check out that goofy grin that hardly ever leaves my face. My dive instructor was absolutely amazing and I cannot recommend the team at Skydive The Beach and Beyond, Newcastle highly enough. I cannot thank my dear friend Doug enough either. Without his constant support and belief in me, not to mention his spontaneous suggestion I attend with him the evening before over dinner with Bec, I would never have accomplished this dream. Heartfelt thanks to you Doug.

Yes it was raining, yes it was freezing but it was so flipping awesome I just can’t wait to do it again.

If I had listened to those most of those doctors, specialists and other naysayers, I would not have experienced one of the most amazing thrills of my life. I would not have checked another item off my bucket list, I would not have found the courage and strength to over come. I would not be here today offering encouragement and moral support to you.

Please do not ever give up on your dreams. I can completely understand that life can be one great big fat challenge, obstacle and barrier, but please try to not let it beat you.

This event took place just four weeks ago and I have so many other adventures to share with you since.

Stay tuned and find joy.

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Learning to Live Again – New Adventure #1 This is another post where I just don't know where to start. I feel it is important to give you a little background so you can appreciate the enormity of what I'm about to share.

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