Health Update – 6 July 2023

Treatment Day

So what’s gone on in the last 24 hours? I’ve started my treatment today, and so far with no side effects, feeling a bit green and have gained my own superpower! but I now need to work out what they are!

But back in the real world of events today, I’m NOT green and at the moment feel pretty normal and had no side effects, and a plus point is I’m not feeling sick.

Now the details, which you might find interesting to you, but feel free to sign off if it gets too boring!

We arrived this morning and was put on a drip straight away for an hour with an infusion of drugs to protect my kidneys, some anti-sickness drugs, and some steroids to help protect my body from the side effects of the radiation. One of the effects of the ‘Lutathera’ drug, is that it can affect different functions in my body and so they were keen to monitor and keep these things under control.

The radioactive infusion lasted for 30 minutes. Normally they would see any reactions to the drug almost straightaway. I did feel that something was going on but it wasn’t uncomfortable and I couldn’t really describe how I felt. Fortunately, I didn’t have any ill effects from the infusion. I then spend the next 3 hours receiving further drugs to protect my body. I also needed to drink lots of water to help flush away any excess of drugs that my body didn’t need.

At the beginning of the day, I also learned that there would be 2 of us going through the same treatment today. But heard nothing more.

After coming off the drip I was then due to be taken up to an isolation ward. At this point, I met the other guy and was introduced to my nuclear-radiating twin! called Michael. We were both taken up to a small isolation ward with large lead-lined isolation rooms where we would stay overnight. We would then be monitored via CCTV and only see nurses when then needed to check our vital signs. which needed to be done every couple of hours. Other than this we were left home alone on the ward.

As radioactive twins we were allowed to be around each other, so we spend the next few hours chatting over our similar stories and getting to know each other. Michael has also had a Paraganglioma tumor removed, like mine, but from a different site on his body, both tumors being rated as Extremely Rare, like 1-2 in a million people. This was the first time that either of us had ever met anyone else with this type of tumor. So we both really appreciated this time, sharing our stories and hearing about some of our shared experiences.

We now have a night of rest before we have further blood tests and a further PET to monitor how things are going. Sue will be coming up to Guy’s to bring me home around 11 am.

Thanks again for all your prayers and support.

Keep up to date with the latest on my blog page at n3il.co.uk.