Starting Treatment

You know you’re really ill when family members around the country all want to visit you at once...

Hospital is the best place to be and the worst place to be at the same time. Just get the hell out of there as soon as you can. I was having the worst few days of my life and the elderly chap in the next bed was in a terrible way. I listened to him each night struggling to breathe, I will never forget those terrible sounds. A tube was put in his throat to help but the next day he was given chunky vegetable soup at lunch and was rapidly back in surgery having the tube unblocked. He survived that ordeal but sadly I don’t think he had long left. If you have an elderly relative in hospital keep a very close eye indeed.

My final obstacle before starting chemo was a pleurodesis operation to glue my lung and its lining back together. Try and avoid having that one if you can, it all went well but was unbelievably painful afterwards. The surgeon did a good job but he really only spoke Greek so I didn’t have a clue what he was saying, and rather worryingly his team around him didn’t seem to either.

R-CVP - June 2015

Back home at last and my first course of chemotherapy, called R-CVP, administered as an outpatient. Eight cycles over six months. My chest drain came out after two cycles and I finally started to think the chemotherapy might actually work, which thank goodness it did. I can’t really describe how terrifying it is waiting for the results of a post treatment scan. Trying to sleep the few days before, the sick to the stomach feeling driving to the hospital and sitting in the waiting room. I’d rather wait at home and get a phone call but that doesn’t seem to be an option. Then I was told I was in remission. No elation, just huge relief at no more bad news for now.

It was to be nearly three years before the next bad news. The problem with an incurable lymphoma is that it keeps coming back. Some follicular lymphoma patients though stay in remission for many years, it really is just the luck of the draw. Three years is not particularly long, lots of patients do get longer than that.