It’s been over three months since my surgery. Three months of highs and lows. Three months of trying to figure out what is normal and what isn’t. I’m still struggling, I paint a smile on my face every day and try my absolute best to be positive, but deep down, I’m so scared. I’m in remission, which means I’m in temporary recovery. So it isn’t over yet.
I need to give myself a break, it’s completely ‘normal’ to feel how I feel. To, in fact, feel 100 times worse than I did pre surgery. In total I’ve had around 3 bouts of sinusitis, 3 other infections, including pneumonia and suffered adrenal crisis twice. In just over three months.
Most people assume that because the tumour was removed, I should be back to ‘normal’. I should be OK to eat what I want, go to the gym, get back to work, live a normal life! That isn’t the reality, yet. It can take 2-3 years to get back to ‘normal’, whatever that is.
Before I go into detail about the struggles, I do have good news. Some of the things did go away straight after surgery, mostly mental aspects of what the tumour caused. I am much more confident, I can talk and hold a proper conversation. My brain seems to be slowly switching back on too, I can watch TV without being seriously confused. Although, I am rewatching Game of Thrones, which isn’t necessarily a bad thing! Physically, the hump on my back has reduced and my stretch marks have decreased and my body seems to be looking a little better shape wise.
I really wasn’t going to do this but below is a photograph of my body the day before surgery. And I KNOW, it’s vile. I hate looking at it. But, I wanted people to see what Cushing’s does to you.
The actual physical movement and pain gets worse. I still find it exhausting to walk, put my clothes on, taking a shower and generally moving around. I could happily lay in bed all day doing nothing most mornings. So, before I get labelled as ‘lazy’ again, I just want to clarify and reiterate that cushing’s does serious damage to your body – your muscles and bones and it takes years for them to recover. I toss and turn most nights because every bone and muscle in my body is in agony. And at the moment, I still need steroids to keep moving, to function and to stay alive.
So what is the process now? When will I heal? When will I be myself again? I may be medically incorrect but this is my journey and how I am coping and dealing with it.
Before surgery, my pituitary gland was producing too much ACTH which then made my adrenal glands produce too much cortisol. Which meant I was in beast mode all the time. Now, my pituitary gland is on holiday, far away and doesn’t seem to want to come back to me any time soon. So now I’m in limp noodle mode, so I have no cortisol being produced naturally.Everyone needs cortisol to survive. It’s what helps you handle stress. In order for me to stay alive, I have to replace my cortisol with Hydrocortisone. Through the months my Endocrinologist will monitor my dosage and reduce it to help my body wake up. Now I am waiting for my body to naturally produce its own so that I can get off the HC.
It’s all a waiting game, I guess.
That brings me on to the importance of taking my HC. I also have to carry around an emergency HC injection. I had my first adrenal crisis on a Tuesday. I threw up, so I doubled up on my HC to make sure my body dealt with the shock. I then threw up again and knew I needed more HC so injected myself in the thigh. I am not even kidding, it was like a scene from Platoon or some war film when someone is screaming and shouting. I scared my poor dog half to death. As soon as I injected, I felt better but had to seek medical attention. I was sent to Sheffield who did some tests and turns out it was an infection that I didn’t know about. I was given antibiotics and sent on my way.
I was feeling OK but by the Saturday I was a bit out of sorts. I threw up on the Saturday night. Doubled up as I should but threw up again. I was very dizzy and was in severe pain, all over. I attempted to give myself the injection but threw most of the vial of HC all over and didn’t draw it up into the syringe properly. From then on it was a blur. I sort of remember being in an ambulance. I remember being in a room with a bright light and being poked and prodded with needles. My husband and family were livid, they kept telling the A&E staff I needed emergency HC to no avail. No one would listen. It took almost 3 hours to treat me, despite having a medical alert bracelet and all the paperwork. I could have died. I WAS dying. As soon as I received the treatment, I felt better. My body unseized and my excruciating pain became tolerable. In the end, we found out I had pneumonia.
I have been through treatment for that and I am now waiting for more tests and to see my endo in September. I feel frustrated but I know it is going to be a long road. I just want it to be over.
I am focussing my frustration and trying to take my mind off things by raising awareness for The Pituitary Foundation. I want more people, including medical professionals, to be aware of this life threatening, debilitating disease. I am hosting a live music event and raffle on 4th November 2017 at The Grove Hall in South Kirkby. If anyone reading this from the Yorkshire area would like to come, please contact me. I would love to spread the message loud and clear! I am also taking donations via JustGiving to raise money for the Pituitary Foundaiton, here’s the link: https://www.justgiving.com/fundraising/byebyebrian
Even though it’s been a tough few weeks, I have had a fairly lovely August in terms of spending quality time with my family. It was my birthday in the 4th and Daniel took me to the place where we married for a delicious meal and bought me some gorgeous gifts!
I’ve just returned from a 2 night trip to Cambridge to visit my Mum’s cousin. We didn’t do much but it was lovely to chat, laugh and gossip and to have a change of scenery. I am so lucky to have my Mum, she’s my best friend and I can literally tell her anything.
I’ve said it before and I will say it again, I am so grateful that I have Daniel. He is my absolute world and after what I’ve put him through, as well as his own work and health issues, it’s a surprise he is still standing!
We have booked to go to Greece in October and have our own suite with a private pool. I honestly can’t wait! I thought I would look a lot different by then but now, I know I won’t. But, it doesn’t matter as I will be with my favourite person, forgetting about everything for eleven nights.
Who knows what the future holds! I just need to remember to remain positive and keep smiling.