I can’t believe how quickly the last 7 weeks have gone by! It only feels like yesterday that I was questioning my own sanity and wondering if it really was ‘all in my head’. Well, turns out it was, literally! Feels like just yesterday that I was unable to bend down, walk, even breathe without feeling pain, unable to communicate with people and unable to make any form of decision, plus all the other complications! My surgery was pushed forward as an emergency due to the size of the tumour and its location was so dangerous. The surgeon that did it well and truly saved my life and I am so grateful!
A lot of people have been contacting me in regards to my story and are urging me to share more and more – maybe I should write a book?! Call me Carrie Bradshaw… If only I had the Sex and The City lifestyle!
It’s pretty overwhelming how many people have actually contacted me, people from all over the world and my blog has been seen now by hundreds of thousands of people, in so many countries and I am grateful for all of the support and encouragement I have received, it completely outweighs some negativity that has been sent.
I do want to reiterate to those that have contacted me asking for advice on diagnosis, the process, recovery etc – I am not a qualified medical professional. I only have my own journey that I can relate to and I can offer help and support, but I can’t offer medical advice. Another thing that is difficult is the difference in processes and legislation in different counties – I went through both Private hospitals and the NHS, and found the NHS to be the route to follow due to being seen by one of the best endocrinologists in the world. I can certainly recommend doctors and surgeons and share the story of the process and tough journey that I went through, but I can’t tell you what it will be like for you.
Currently, my body is in overdrive trying to readjust and go back to normal. However, I’m never going to be ‘normal’ again. The disease completely changed me both mentally and physically and I had it for such a long time, I think it will always stay with me, one way or another, even though the tumour has been removed.
I am finally learning that I have to be patient. Not only with myself, but also with those who seem to assume that because the tumour has been removed, I am automatically better. The brain is the most important organ in the body and there was something really disrupting mine, changing my whole being, slowly killing me. At first, especially when I was battling the Doctors, I found it really upsetting when people just thought I had put a bit of weight on and was a bit shy. Did they not understand? Well, no, how could they when they weren’t in my head. They only saw the Amy that painted on a smile, pretended everything was OK. They didn’t see the state of my body underneath my clothes, they didn’t see me struggle to get up the stairs, not able to eat a meal with a knife and fork due to my wrists being so weak. They saw the happy go lucky, slightly shy girl who wanted to make everyone happy. They didn’t see me break down on the bathroom floor with the door locked, bawling like a banshee screaming about suicide. That person is the old me, that’s the pre surgery Amy. I don’t worry about what others think anymore, I am learning to be patient with myself and realise that it is going to be a long process.
I’m feeling better in a lot of aspects but the majority of the time, I wake up and my body is aching, my memory is foggy and I can’t do much without feeling absolutely exhausted. I haven’t been out of the house for long, I have no energy and I am so tired! But then I find that I can’t sleep at night. But, despite all of that I do feel like a new me, I feel so positive! My nose is getting better, my sense of smell is still improving day by day and I can taste most things again. I can brush my teeth without feeling like I have run a marathon and most of all, I can smile without pretending. I still look in the mirror and can’t see any physical differences but my clothes are fitting better. I think it’s really hard to see improvements within yourself and it feels like it’s taking forever. But I am only 7 weeks post op.. Before I know it, I will have the energy to walk Willow with Daniel and go shopping and for cocktails with my Mum – hey, I mentioned Carrie Bradshaw earlier! Although, I doubt a pornstar martini in Leeds is the same as a cosmo in New York..
I do believe that my anxiety is improving. Pre surgery I wouldn’t even go to family events as the thought of it turned my stomach. Now, I feel completely comfortable with friends and family and believe this is a process that is making me a stronger person. Whilst I seem to be on a bit of a rant, I do want to mention that there seem to be a lot of people that throw the term ‘anxiety’ around VERY loosely and it seriously bothers me.
I was told by my doctors to avoid stressful situations for the first few months post op – HA! I swear, if there was a God, he is really testing me. Outside of the regular normal day to day challenges of my recovery, my family and I have faced additional challenges, so I have had to pop a few extra pills ‘just in case’. (I can go into adrenal shock and basically die, if I don’t!) I have had 4 infections post op, 2 of these were sinus infections and trust me, when you’ve just had brain surgery and not allowed to blow your nose, it is fucking awful! (Sorry for the language Mum but I wanted to add it for the dramatic effect). Then I had 2 bladder infections and now I have gastritis which have been caused by stress! So, in order to not go into adrenal shock, I’ve had to double my dose of hydrocortisone, so my hormones and cortisol levels are all over the show, which has really hindered my recovery. But, I am still healing and now the infections have just about cleared up, my body can begin to recover again.
I am also trying to keep it together and stay strong for my family. My Grandparents, who have had so much influence in my life, are both very poorly. My Grandma has terminal leukaemia and is currently undergoing chemotherapy and my Grandad has recently been in hospital after they found a 6.5cm aortic aneurysm, basically a ticking time bomb. He also has Alzheimer’s, which breaks my heart. Seeing someone who you have so much respect and admiration for, deteriorate and become a shadow of their former self in front of your eyes, absolutely breaks your heart. I can only cherish and make the most of the time that I have left with them and continue to remember the amazing memories that I have.
So, trying to steer clear from stress is almost impossible and things will continue to rain on me but I can now take that in my stride and know it is going to make me stronger. It’s been a while since I typed and ranted, it feels like I’m talking to someone and they’re listening without judgement.
I have to wait longer than the average Cushing’s patient to see my Endocrinologist next and have follow up tests due to my case being more complex than most and the length of time that I went undiagnosed. So he wants to give my body more time to heal before he begins to test my other hormone levels.
I know that I have briefly thanked people for their support and everything that they have done for me but I just want to personally thank (if I haven’t already) some people that have made a difference in my life and done more for me than they could ever know and if you are one of those people and you are reading this, thank you. You may not know what you have done, it might have been something tiny but a tiny gesture can make a huge difference to me. Those special people are my amazing husband, Daniel, who has been through thick and thin with me and seen me at my worst and weakest. My parents, Jayne and Dave, my brother Sam and sister in law, Hollie, my Grandparents, my Bojy family, Caroline, Peter, Antoni, Lewis and Sam, Auntie Anna, Auntie Judy, Auntie Helen, Maxine Hatton, Linda Clelland, Angela Owen, Tori Clayton, Becky Lobb, Jami Roebuck (& Noah), Amber Mcgillivary, Richard Wood, Cameron Shields, Laura Walker, Katie Spencer, Caitlin Crockford, Jenna Keough, Zoe Chadwick, Jennie Perkins (& family), Helen Grace and family on my Dad’s side that I have only met a few times that have sent kind messages (Joanne, Derek, Emily, Jude & Kay). I could go on but they are the ones that have stood out and been so lovely and really cheered me up when I have been so down. Oh and of course Jeremy Kyle and Ellen Degeneres..
I am, hoping that now all of the infections have settled down, I can stick to my 30mg of hydrocortisone per day and I will continue to make improvements. I know it will be a long time but I am feeling good about my future journey and I hope that I can continue to help and support any other Cushing’s patients that have reached out to me/reach out to me in the future. I want to raise awareness for this disease and do some fundraising in time, so that no one has to struggle and fight like I had to in the future. I have so much respect for those Drs that did believe in me and can only thank my husband for fighting my cause and making sure I was seen by the right people. If I wasn’t and it wasn’t pushed through as urgent, there’s a very high chance that I would be dead. BUT I’M STILL HERE.
Now my goals in life are to become Carrie and drink cosmo’s and celebrate my literary success.
I’ll keep posting and if anyone has any questions in the meantime, feel free to fill out the contact form or email me at email@example.com
Now I’ll go back to watching a few films, painting my nails and relaxing. Got quite a busy few weeks with appointments and things to do – not all medical for once! I’m having my brows mircobladed this Friday, Blink 182 next Wednesday (Daniel got a free ticket due to me having to go in a wheelchair!!) and my hair next Thursday 🙂
Positivity and smiling is key.