“Next came the wait for the results. I don’t care how much you’re told not to worry — when you hear the word tumor, you worry!!”
Well, my story starts by an accident (literally). I fell off a roof and ended up having an x-ray, where a keen-eyed consultant noticed something other than broken bones during a CT scan. A few days later, I was asked to visit the hospital for a chat where I was told I could have pheo!!!! “WHAT THE HELL IS THIS?” were my first thoughts.
After the consultant went into a deep explanation, a few things started to click: for months before my MRS commented several times how my memory was getting worse (my kryptonite if you have seen the pheo videos).
Then the tests began over the next few weeks. The peeing in a bottle and blood tests were no problem, but then came the scan injection! I arrived at a university hospital 25 miles away which was 3 times bigger than my own which was daunting to say the least. I was taken to a side ward where the doctors explained what the procedure was – a test for neuroendocrine tumors (ALARMS). A tumor was not what I was expecting.
After a short wait I was taken into a room and a nurse came in with a metal container. I was sat down and prepped for an injection, but unlike any I had seen before. She had a large metal syringe which she proceeded to inject me with. At this point I had the strangest scariest feeling ever. As the fluid entered my arm, she began to tell me that I may feel a bit strange, and it would pass – but it had already started, and by the time she had finished the sentence the feeling was in full swing. I can only describe the feeling as what I imagine a heart attack would feel like… My heart felt like it was going to come out of my chest, it was beating so hard. I felt like someone was playing football with my head, and at the same time the strongest “pins & needles” feeling started on the side of the injection and went around every part of my body within seconds. The whole experience may have only lasted 90 seconds, but it is one of the strongest memories of my whole journey so far.
Next came the scan. I was asked to empty my bladder as this was a 90 min procedure, and in the toilet was a sign asking men to sit down because any splashes / spillage could result in the ward being closed for deep cleaning !! “What have they put in me?!” I thought. I was taken to a room with the CT scanner, where I laid for 90 minutes. This wasn’t bad as they had music playing. I was then given some information paperwork and told to keep away from young children / pregnant women and airport x-ray machines for 2 weeks and shown out via a separate exit to other patients ! Again thinking “what the h*** is in me?!” But after all that I can say there was no ill health/bad symptoms whatsoever.
Next came the wait for the results. I don’t care how much you’re told not to worry — when you hear the word tumor, you worry!!
After a few long weeks I was asked to visit my local hospital for the results where I was told yes, I do have pheo para, and was given a full explanation of the rest of the procedure and operation involved. I had meetings with the surgeon and the anesthetist over the next few weeks and was given a full explanation of what was to follow.
The treatment started with a low dose of Phenoxybenzamine, which is designed to reduce your blood pressure to a point where it is safe to operate. I had to check my blood pressure twice a day and record it. I reported my readings in a weekly call to a consultant, who used them to help decide on the next weekly dose. The goal was to get my BP as low as possible. During these weeks, the biggest symptoms I noticed were light dizziness, a lack of interest in daily tasks, but the biggest change was the fact that during the day I would need to have a lie down, and sometimes even sleep!! (People used to call me Duracell because I was always on the go, dusk to dawn.)
Hospital time! 10 months after this all started, I was admitted 4 days before the day of my operation so they could reduce my BP even further, so I just chilled in the hospital with a few extra drugs. On op day I was wheeled down to theater and woke in the recovery room around 4 hours later. I was in the ward for a few days while I recovered, where they encourage you to walk eat and shower ASAP. I was told by the surgeon next day they could not remove the tumor alone, so they took out the whole adrenal gland it was attached to. Not a problem – I have another, and it can cope on its own.
It’s been about a week now and I am home, with a slight discomfort of the belly where there are 5 holes healing nicely and the bruising is starting to fade.
All in all, it was a scary and long-winded journey! I just need to see the surgeon next month to get the all-clear and have several tests just to see if all is going to plan. One of these tests is to see if this was hereditary or just bad luck!
Hope this helps those of you who are just starting the journey.