I think we all have experienced someone telling a joke that nobody gets. Back in the 1970’s (I’m showing my age here) there was a popular expression that XXX Rules OK. At the time my father used to subscribe to a political satire magazine posted from England known as Private Eye. One issue featured one of my favourite cartoons of all time with a graffiti artist slumped on the ground, against a brick wall, with the partially completed slogan Apathy Ru…. written on it and an empty can of spray paint at his side. I remember being so enamoured with this cartoon that I had it transferred onto a T Shirt only for no-one else to get the joke. I guess you needed a warped sense of humour to appreciate that the uncompleted graffiti was Apathy Ruling Ok.
So what on earth does that bad joke have to do with anxiety. Not much to be honest but the analogy serves my story by pointing out that what you see in something isn’t maybe what others see. So it is with cancer and the way it causes anxiety both for the patient and those caring for them. I think unless you are involved directly with someone it’s hard to appreciate what they are going through. Even when the news is all good it can be hard to overcome that deep seated fear in the back of your mind that this is all temporary. Or maybe the test results are flawed and they missed something.
So it is with me, my mind playing games when the results of the scan clearly show an improvement. The PET Scan above shows the most recent scan on the left compared with the results from March on the right. It’s obvious to anyone who isn’t colour blind that there is a significant improvement. In fact to use the words of my Haematologist an almost complete response.
The one area of concern is the green patch next to left shoulder. Which is where the lymphoma has invaded my bones and has actually spread since the previous scan. Although on the plus side it’s less active than it was back in March. So you would think I would be celebrating the overall improvement in things.
Except: What’s happened is the treatment I am receiving has hallowed out the enlarged lymph nodes. In the words of my haematologist just the scaffolding is left. And it’s this scaffolding that’s causing me my anxiety issues. For so long now I have looked at the lump at the base of my neck and associated it with the disease. Now although that lump is smaller and softer it’s still there, as is the bony growth on my third and fourth rib. So every time I look into the mirror I am reminded of the disease. That reminder has me touching the lumps looking to see if they have changed, is it getting bigger or harder? I also find myself looking for new growths even though I know this is highly unlikely now the trial drug is working.
This probably wouldn’t be the case if I hadn’t spent five years living with the disease and 18 months going through various forms of treatment after relapse, only to have these fail. So to come to terms with a positive result afterwards is more difficult to get your head around. Then why on earth would I name this blog the way I have and talk about Anxiety being OK!
I think it’s about being human. Or maybe having an overactive imagination. All through the last 18 months of treatment I have tried to remain stoic and strong. Even the black dog period I went through back in February only lasted a few days. I have managed to convince myself that I can beat this disease even when things are going backwards. Recognising that I am always going to be anxious that I will always worry about the disease returning or even not going altogether. These are steps towards learning to live with lymphoma.
The fact that I can see lumps and bumps is now part of who I am. The disease is part of my life both looking forward and backwards. Learning to move forwards and live with the disease is about recognising the anxieties it causes and working out how to overcome them. Everyone that suffers from lymphoma know the chance of relapse is high so I think if I didn’t have these I would be kidding myself so yes Anxiety does Rule Ok!
I have now completed four rounds of the experimental drug Glofitamab without the onset of any side effects. I must say I feel blessed to be a guinea pig for this trial and to find myself among the those who it appears to be working for. The trial is set to run until January at which stage I hope that the partial response will become a total response.