My consultant had a discussion with his colleagues about the correct treatment I should have and they decided it should be chemotherapy.
Of course before treatment could commence I had to go and have a echocardiograph (which is a scan of my heart), then blood tests.
Next, the appointment! first I have to go to the Rheumatology Day unit the day before, to have an infusion of steroid (now my face is the shape of a moon, and all the fat in my body has gone to my belly). The next day, back to the Day unit two hours before chemo to take a tablet to prevent damage to my kidneys and bladder. Now it's off to the chemotherapy Day unit.
After waiting for over an hour, the cannula was finally put in and I was given anti sickness medication before the chemo. Then it was back to the Rheumatology department to wait another two hours as I had to be given the medication to prevent damage to my kidneys and bladder again. I was finally allowed home with more medication to take six hours after chemo to prevent damage to, (yes! you have guessed) my kidneys and bladder.
Now I am back home and I just want to sleep, I am feeling so lethargic and weak.
I have been instructed to take my temperature every day as I may not know I have an infection because the chemotherapy is now going to suppress my immune system (which is already not working properly). I also have to stay away from people with infections.
Oh! Did I say my hair is going to fall out as the chemotherapy will kill the good and bad cells (the doctor informed me the day before treatment should begin as she was getting me to sign the consent form).
For about a week or so after treatment I am weak, everything taste awful, I am hot then cold and just want to sleep.
Anyway now I am having this treatment, how am I really feeling? No different. I am still weak, in pain, cannot walk or move quickly as I get out of breath (when this happens it can take up to about fifteen minutes for me to start breathing properly once more, this includes talking). This always frightens me especially when I am on my own, as I would not be able to call an ambulance (because I would not be able to speak).
I have been having the chemotherapy once a month since October and I have not seen my consultant yet so I don't know how long I am suppose to have this treatment for (just had an appointment for January) so I will be told more then.