I know that I said I was taking a break. I’m not exactly sure what I was taking a break from. In a way I wanted to escape reality and forget about what was going on. When my consultant told me that my Cushing’s had returned, I was heartbroken, I gained 14kg within weeks and my mental health took a bashing. I think everything was heightened because the day that I noticed that symptoms were returning, was the day I watched helplessly as my Grandad fell to sleep forever and I felt like my whole entire world had collapsed. All I wanted to do when I was told that I was no longer in remission was to speak to the only person that was no longer there. I’ve never experienced loss, I’ve never really lost anyone that meant so much to me and I think, mixed with ridiculously high cortisol levels, I felt lost. I feel lost. Something is missing. Losing my Grandad was like losing something elemental, like losing the air we breathe. I know that he was proud of me and everything that I have achieved so far and now that the initial shock and devastation of losing him has subsided slightly, I can treasure his memory in my heart forever.
So, what happens when neurosurgery fails? There are a few options a patient can take. I’m not going to bore you by going through each option because I’d be here all day if I was to list the pro’s and cons of each intervention. I have chosen, well, I didn’t really have much choice in the matter, to have a bilateral adrenalectomy, or a BLA, which is the removal of the adrenal glands. Further pituitary surgery, in my case, wasn’t even considered as there was already a lot of damage to my pituitary gland from the initial surgery and the location of the tumour was dangerous so the likelihood of the surgery killing me was even greater than before. I chose not to go down the road of trying different medications as they’re only short term solutions and there’s no point putting off the inevitable. Radiotherapy can be successful in some patients, but it can take years to work and it can also make patients infertile and even though I have had PCOS, the menopause and Cushing’s twice, I’d still like to at least try to conceive naturally.
Since my last post, I’ve had repeat tests and many scans to make sure that having a BLA was the definite right decision and it turns out, it was! Obviously, nothing is ever straight forward with Amy Bojar, it never has been! After having a CT scan of my adrenal glands, it turns out they’re enlarged and after a few more blood tests, it was identified that I actually have both dependent and independent Cushing’s – basically I have adrenal and pituitary Cushing’s. The scan also showed that my organs seem to be quite close together, so the surgeon may have to remove my spleen and part of my liver. After getting over the initial upset that I have Cushing’s again, meeting the surgeon and doing some research about a BLA, I feel a little numb. The surgery will mean that I will finally be rid of the illness that has dominated my life since I was a teenager. I will remain in remission. BUT, obviously there’s a lot of risk when it comes to removing major organs, organs that a human relies on to survive. A lot of people I have spoken to have asked me what will happen to the pituitary tumour once I have had my BLA. Well, that’s unknown at the minute, it’s a risk I have to take. It may grow and cause other issues or it may just subside as the ACTH it is producing will have nowhere to go. Another thing that a life without adrenal glands does, is reduce your life expectancy quite significantly. But, as my consultant said, if I didn’t get rid of my Cushing’s, I wouldn’t survive the next few years. I won’t go into all of the risks because you’ll just ask me why I am going ahead with it. But, I made an informed decision after a lot of careful thinking and research and now, I can’t wait to see the back of Cushing’s, I am prepared to deal with further issues in the long term.
Having no adrenal glands will mean that I am adrenal insufficient again, after the amount of crisis’ I had prior to my relapse, I am confident that I can deal with having to take replacement hormones for the rest of my life. And this time, there won’t be any uncertainty when it comes to dosage! I guess the things that do make me a little nervous is the fact that my consultant said I may never feel ‘well’ again and the fact that I am COMPLETELY reliant on medication, I won’t naturally produce a single bit of cortisol. So, if I was to go into crisis, I would need immediate medical intervention or I would go into a coma or die. Over the last 8 years, I have grown to know my body and how it works so I am positive that I would know when to double my medication and I know that if I was to vomit more than once, I would need to go straight to A&E. I have all the medical information for the A&E staff so the likelihood of the latter happening, is low.
My second experience with Cushing’s hasn’t been easy in the slightest, my levels were higher than they were the first time around and that’s when I had had it for years! My body has taken a bit of a bashing physically. I have gained a lot of weight very quickly, my hair is falling out rapidly, my infamous moon face is back and my muscles are so weak that I can’t even open a bottle of juice or walk to the end of the street without wanting to collapse and cry out in pain. The weight gain and hair loss is really hard to deal with, I don’t feel attractive, I almost feel ashamed of myself, my clothes don’t fit and pretty much the only thing that fits me are leggings and baggy tops. Sometimes, I feel like all of my fight has gone, that’s usually the feeling when I’m wide awake at 3am not being able to sleep, that’s when I feel that there’s no point trying so hard to be positive when this is happening again. Cushing’s is so hard on your soul, too. I blame myself, I beat myself up and I drag down the people that are closest to me because it’s the only way I can stop myself drowning in this huge pool of hormones. People still, even friends and family, don’t know or can’t understand what I am going through. Since I started this blog, I have met some of the most courageous and amazing people who have also suffered with Cushing’s and I know what they 100% completely understand and they always know exactly what to say to keep me going. They know the anxiety that I feel, that making a decision about what to have for tea can cause so much anguish. I haven’t let my anxiety beat me down as much as I did the first time I had Cushing’s, I’m not a shadow of who I was before, even though I’m not the person I used to be, I am me and even though this silent monster is trying to kill me on a daily basis, I am determined to see the back of it once and for all.
I find so much solace in writing, in person, I find it really difficult to express my emotion and I’m one of the least affectionate people in the world. But, I find writing so easy to explain how I feel, to write down all of my thoughts as they flow through my head. I have found that writing during my Cushing’s rollercoaster has really helped and I’d like to think it has also helped others as well, from my friends and family to other Cushies.
I can’t wait for my BLA now, I can’t wait for a new beginning (again!). It isn’t going to be easy to readjust and I will have a new illness to deal with for the rest of my life but I am prepared. The last 6 months have been some of the toughest in my life but I still try to paint on that smile each day and I am eternally grateful for the support that I have received. I couldn’t have got through this journey without certain family members; Daniel puts up with me and looks after me, he walks our dog, he cleans, does laundry, cooks and most of all, supports me 100% every single day. My Mum, my Dad, my brother, my Grandma and Grandad and my Auntie Anna have gone above and beyond just simply caring, they will never truly understand how grateful I am, how grateful both Daniel and I are. Some family members find it difficult to be supportive, I don’t know if that’s because they don’t know how hard it is, especially for Daniel to look after me 24/7 or if it’s because they don’t particularly care. But, recently I have learned not to care what other people think, not to cling onto and be there for people that aren’t there for me or my family. This entire journey, from the start, has helped me grow as a person, made me appreciate people and life itself. People can be incredibly naïve to the world, only wrapped up in their own lives, with no clue what is going on with others.
This will be my last post until after my BLA. The next time I write, I will be Cushing’s free! A second ‘beginning of the end’.
I’ll still be reading and replying to emails until 25th January, so as always, please feel free to contact me if you’re struggling, if you need any direction to sources of support and keep fighting.