The last few days have been accompanied by a lot more pain than I envisaged. I was of the opinion that I would start to feel significant relief once the spinal tumour was removed and the surgery site healed up. Whilst the shooting pain from the hips to my toes which was the most brutal pain has resolved since the surgery, the pain in the foot seems to be worse and the pain in my pelvis/glute is much worse.
As a result of the pain from the last few days and the fact that the pain has been keeping me up at night, I couldn’t wait for the radiation appointment. Well, today was the day.
We left the house at about half 8,dropped lil missy at her daycare and got to the hospital a few minutes before 9. I sat at the waiting room for about 10 mins and then a nurse came to take me to the consultation room. She got me to fill out some forms that asked me to indicate where I felt the most pain and to rate the pain in each area.
Next, a resident came in to have a chat with me. We discussed my extensive medical history before getting into the specifics of the radiation treatment. She explained the procedure and the likely side effects and said the radiation oncologist would be in shortly to answer some of the questions I had and to provide more information.
The radiation oncologist came in shortly after that and started by asking if I’ve felt any relief since the surgery. Next, he got me to walk around the room and noticed I walked with a limp. He asked about that and I explained it was due to the pain in the pelvis and the soreness in the foot. He explained that the recovery of the foot would depend on how much nerve damage was caused by the spinal tumour. He couldn’t provide any firm assurances that the foot would ever go back to normal, it was a “we’d wait and see” kinda discussion. However, he felt strongly that the treatment would help with the pain in the pelvis. He felt I would feel some degree of relief after the treatment but he couldn’t comment on whether it would be a total pain resolution or a partial one.
Going into the specifics of the radiotherapy, he explained that I would have 5 sessions. First would be this afternoon then one every day till Tuesday. He said both the surgery site and the Sacrum would be treated.
In terms of side effects, nausea, fatigue, irritation of the skin (redness, burns etc.) and bowel issues were the most likely. I asked how quickly I would expect to start feeling some relief and he explained that things would probably get a lot worse before they got better. He estimated that I should start to feel better in 2 – 3 weeks (boo!!! I was hoping for more of an immediate relief).
He’s placed me back on steroids to help with the inflammation that is likely to accompany the treatments and he said I should stay on top of my pain meds. I think that pretty summarized my meeting with the radiation oncologist.
Due to my case being an emergency, I get to start treatment today. I was taken to the radiation simulation room for a CT scan and for some markings to be made on my body. The markings would serve as a guide during the radiation treatments.
Surprisingly, lying on my back during the simulation and scan aggravated the pain in my pelvis so much and it was reminiscent of the pain I had during the MRI scan. That made me aware that the pain was definitely getting worse and I’m glad the radiation treatment is starting today.
The technician asked after the scan if I was aware I had scoliosis (aka curvature of the spine). I told her the physio mentioned it during one of my appointments and she mentioned I had a bit of an S curvature of the spine – great! Let’s just throw that into the mix as well 😦
We are back home now as the radiation treatment isn’t till 3pm which is a couple of hours away. We thought it was better to come home than waiting at the hospital.
We got our landscaping sorted over the weekend and sitting on the deck is fast becoming my happy place. I’m out there taking in some sunshine and staring at the grass whilst trying my hardest not to think about the impending treatment or the potential side effects….
I’ve included a picture of my current view just because 🙂
UPDATE POST FIRST RADIATION TREATMENT
We got back to the hospital in good time for the radiation appointment. I was taken into the treatment room and told to lie down on my back. Two technicians went about marking and setting the beam to ensure the right area was being radiated. The process took a lot longer than I had anticipated and the longer it went on the more I felt the throbbing pain building up in my pelvis. I asked for a knee support but it made no difference. They exited the room once they felt satisfied and the treatment began.
Problem was that I had been lying down for almost 10 minutes at this point and the pain was already at an 11/10! Before I knew what was happening, I felt warm tears rolling down my face. I knew I couldn’t move or change position so I basically had to suck it up and hope that the treatment would be done in no time. Well, it went on and on and on!!! The surgery site was radiated first and next was my side and then my back. I waved after the treatment of the side and one of the technicians came into the room and he saw how distressed I was. By this point I was sobbing uncontrollably, to say I was pretty broken would be an understatement. My tears were a combination of pain and frustration. I just couldn’t get why I didn’t deserve a break!
I asked the technician if I could take a break and he said that was okay. He helped me up into a sitting position and the second technician came in and asked if I needed something for the pain. I explained that I took my pain meds prior to coming in but that it obviously wasn’t helping. She decided to page the radiation oncologist and he came into the treatment about 5 minutes later. He asked if I had taken Fentanyl sublingually before and I told him I had. He said they would give me a dose of it and that the relief should be pretty immediate. A nurse came in a few minutes later and squirted the med under my tongue. We waited for another few minutes before I laid back down and they resumed the markings and all.
I honestly don’t know if the pain med helped or not but I didn’t have to find out as the treatment was done a few minutes later. I left the room but broke down as soon as I saw hubby. I went into the “my life really sucks and I can’t seem to catch a break mode”. He could feel every one of my pains as he knew what was going on (the technician was kind enough to update him when I had to get the break). He did his best to console me and he suggested we do a few different activities that I would have jumped at on a good day, well today wasn’t a good day and I just couldn’t shake the feeling of defeat so I said no to all of them.
I got the dates and times for my remaining four appointments and we came home afterwards. I am dreading the remaining four treatments and hoping they are nothing like this but then I remember how they said things will get worse before they get better and the feeling of defeat returns.
I’ve got a morning appointment tomorrow and I feel pretty exhausted so I’m off to bed. I am crossing my fingers and toes that tomorrow would be much better. Please say a prayer for me if you can, I really really really need a break. I can’t take this pain much longer! 😦