First Timer

Hi Folks,

I’ve never written a blog before.

I’m a 50 year old Irish woman, who was diagnosed with FHNL stage 2 at the end of June this year. I was told by phone that it was FHNL, having already been told that I had some form of lymphoma. I was hoping for Hodgkins, because of the possibility of a cure. I was alone at the time. I felt like I had been hit by a baseball bat. Stunned. But my world didn’t fall apart. I didn’t cry or rant or rave, when my husband came home an hour later. I more or less shrugged it off, accepted my condition and just treated it as an inconvenience. I went to all my clinic appointments, had the scans, started R-CVP in July and kept on working until I was advised to stop in September. I didn’t want to stop work because it meant that I had to admit I was ill.

I’ve told most people in person. It was tough going back to Ireland to tell my parents and siblings. They all reacted as I did, stunned but accepting. It must be familial character trait. We generally get hysterical over small unimportant things but big issues are dealt with calmly. It’s strange. I walked them through the condition. My dad just repeated a mantra “It’s not curable but it is treatable, so that’s OK.”

I’ll have my 6th R-CVP treatment tomorrow. Two more to go and then on Rituximab injections every two months for the next two years. My response to treatment has been very good. The cancer is in my abdominal area and my lymph nodes have significantly reduced, the largest to 1.1cm from 6.8cm. I’m hoping for a complete remission but have been told not to expect a cure. It’s something I just have to live with, like diabetes or CF. However, I’m lucky because my life shouldn’t be impacted by the cancer during the remission period.

I really do count myself as lucky. 50% of us will get cancer. I’m lucky because this probably won’t kill me. I’m lucky because I’m relatively young, fit, slim and otherwise healthy. I’m lucky because I have a wonderfully supportive husband, a beautiful brilliant teenage son and lovely friends. I’m lucky because I think I will be able to accomodate this unwanted guest intermittently in my life. I’m lucky because the drugs are working.  My husband and son follow my lead. My son said that if I’m OK he’s OK.

I can cope with the insomnia, the discomfort, the fatigue. I can cope with the outlandish advice of well-meaning people. An old friend who had breast cancer primed me for this. Someone told her to avoid chemo and try mistletoe instead!!! I’ve had a similar experience, chemo is dangerous – the only cure is in food, apparently.

I can still do a 5km at Parkrun every 3rd Saturday and do brisk walk every day. It really helps with the fatigue. My hair hasn’t fallen out but I’m sporting a pixie-style just in case it thins. So far, so good.  My brain is a bit sluggish.

I’m worried about what will happen between the day treatment stops and my next relapse.  I’m not a hypochondriac but I’m worried I’ll become one. It would be great if they could put CCTV cameras into my body at strategic points so I could monitor my lymph nodes. I wish I knew how long my remission will be. It would be easier to manage then. I’m going to do a mindfulness course in January to give me the tools to deal with the unknown. I’m not under any illusion that I will always be this positive, so I need to take pre-emptive steps. I’d class myself as an optimistic realist.

So that’s where I stand. Like Robinson Crusoe, on a island surrounded by an ocean of uncertainty. Just keeping going until a scientific breakthrough arrives.