What a pain in the a***

 I now associate uncomfortable, warm weather with my poor health.  When I found out about my SCT in 2019, it was at the end of June and by the time I had my first major operation, it was the middle of summer. I spent my first set of recovery in the uncomfortable heat, trying to sleep with a variety of fans and open windows, my body swelling in the heat during it's already inflamed state. So it was already a link in my mind, last month, when I woke up on the hottest day of the year (so far) mentally preparing myself get ready for my fourth operation.  We drove into London and I arrived at a hospital I hadn't yet been to before ( I'm slowly checking them all off) on Harley Street.  I hadn't done my research on the hospital before arriving, but I was met in the waiting room by several women who all had an air of excitement about them, which confused me as I felt anxious and a sense of dread over yet another surgery.  It wasn't until I was in my hospital room, dress...

 It started with Thomas the Tank Engine.  There was an episode where The Fat Controller told Thomas to 'change his attitude' over a trivial but seemingly important task and the my children asked 'what does attitude mean?'.  Trying to explain certain words or phrases to four year old's is quite difficult but we settled with 'changing how you see, act and deal with something'. A similar issue arose when they asked me what 'pathetic' meant and I spent a while contemplating on how to describe that in basic terms, my answer; 'being a bit silly', but the attitude question stirred something inside me that told me to practice what I preach.  I've been worried about the next operation, the days are ticking by and with every pre operation form from the hospital, my anxiety is building and pickling my insides with worry. It's the lack of control that is the worst part of it - I have no control on how my body has been dealing with the impact from...

So my fourth operation is booked for 14th June - only two weeks before our family holiday to Centre Parcs; typical - however it will probably be the break I need just at the right time.  The operation will consist of 5-6 injections, in my spine, full of a chemical to relive the chronic pain I am in and allow me to have a better quality of life, temporarily, for around a year. As I said  before, I don't feel I have much to lose at this point.  Things have been really tough - due to a variety of circumstances, I am verging on chronic fatigue; I can hardly move from my bed, my muscles ache, I have constant headaches and my head has started to tremor, which felt like a mild seizure, when I lie down. I have put this towards stress mostly and have vowed to step away from people and activities for the coming weeks until my surgery, unless I feel up to it, listening to my body the entire time. Its been through so much the last couple of years and has still managed to keep me stan...

Perhaps I should join the circus. I'm really good at juggling.  My life at the moment feel like a series of spinning plates - I'm constantly watching each one and catching the one that are about to fall and smash to pieces. One is my health, then you have my children, my husband, my career and I need to grow more arms to keep them all spinning happily and obliviously to the fact that my head is about to explode.   I went to see my surgeon last week and broke down. Embarrassingly crying, hyperventilating and unattractively  broke down and realised in that moment how angry I was. Its been six months since the last operation and I'm still in so much pain; its based mostly where my coccyx used to be but sometimes it shoots down my legs and when I'm stressed it shoots up my back to the point that I can hardly move - I need medication to get me through the day - pain medication at that but now with my PTSD diagnosis that  also includes Citalopram .   Every single day ...

This week marks my 31st birthday.  I have mixed feelings - I feel as though my recovery has been slow and that I haven't felt much improvement, but I have felt more positive than I have in the six months since my last operation - as though I am due and deserve to celebrate.  As we ease out of lockdown, the options to celebrate are limited, but if I'm honest with myself I don't yet feel ready for the big wide world - aside from my boys, I feel like I have no news or change to report and have felt stuck on pause for weeks upon weeks. I haven't drank alcohol for a long time and wouldn't feel ready to 'party' as such -  I'd like to stay within the cocoon I've built around myself until I'm healed enough to face everyone.  We plan to spend the next three days as a family of four or seeing immediate family on both sides;  celebrating and creating memories, hopefully with some sunshine (!!)  I'm looking forward to Covid restrictions easing further, w...

 I think with a major operation, just because it is over, doesn't mean the struggle ends there. It isn't like having a tooth out for example - the hardest part of the journey is the recovery, the time in between operations, building yourself up to then get knocked back down; stripped of your energy and shine.  Its been a really hard week. The pain doesn't feel as though it is getting any easier, sometimes it feels as though it is getting worse and I've spent more night's lying awake in pain, than I have in a blissful deep sleep, healing my broken body.  I spoke to my surgeon this week and expressed my concern over the pain I am still in, five months after my last operation, he said that due to the fact my situation is so unique and the operation's were so complex, he would need to refer me to a pain specialist consultant. My surgeon confirmed that things aren't going as they should with my recovery - in regards to the pain and functionality - for example, my...

To make matters worse  the nurse next to the anaesthetist exclaimed ' oh is it that you?!'  and then turning to me -  'I've heard all about you and your husband! - we laugh about that all the time!'   Fantastic.  Laying there on the bed once again, waiting to be wheeled in and cut open, I could see the medical staff bustling in preparation through the square windows on the double doors. I focused instead, on the beeping machines that I was being hooked up onto. A pillow was put under my head and the hospital knickers were slid off, which is always a very incredibly vulnerable feeling - as I stated in my post about the first operation, in order to remove the tumour I needed to be face down, bum up for the duration of the surgery - so of course I had to be knickerless but there really is nothing attractive about that image. As I was counting down from one hundred whilst breathing in the general anesthetic, my anxiety grew once again. My mind rushed with ...