My eye a few days post op. It was worse for everyone else. I didn’t have to look at it unless I looked in a mirror. So I didn’t
Hilariously I’m a nurse and my husband is the most squeamish man you could meet, but with me being unable to look and just wanting to cry he took over drops duty. He took over the running of the house, the school runs, the homework, dinner. Phoning and making my cardiologist appointment, arranging my full body CT and my post surgical follow-up. Plus keeping his job going and the money coming in to pay the bills. He has no medical training at all but learnt very quickly how to counteract any concerns and worries I fired at him constantly. We survived by being practical. And by not spending a single moment alone together. We couldn’t give each other any space for our fears to come tumbling out. We needed to fill the day with the ‘normal’ stuff. And the kids kept things normal as only children can. They didn’t know what emotional turmoil I was in so had no sympathy for me being tired or needing time out. They bullied me into a normal existence and that was how we survived. I remember someone saying that my husband and I should go out for a meal together. Just the two of us so we could talk. They didn’t understand that this is what we didn’t want to do. Talk. It was too painful. I couldn’t sit opposite him in a restaurant and look at the fear in his face and think about what I could potentially lose. So we didn’t.
Cardiology was next on our list of practical jobs to do. The cardiologist was a wonderful man who alleviated my fears straight away. He listened to my marathon feat and gave it the huge significance it deserved. He even asked my time! Four and a half hours if you’re interested. Very difficult to do with a heart condition, I would have experienced symptoms, palpitations that lasted a few minutes. Yes I have an abnormal heart beat and yes everyone that listens to my heart over the years always asks if I have a murmur, but it’s just me. A little anomaly that about 1:400 have and as long as there are no symptoms it is of no concern. Hurrah! First bit of good news in a long while. “Plus” he said, “you have bigger fish to fry.” Yes let’s not forget the cancer. I was to have an ECHO (ultrasound of the heart) and was taped up to a 24 hour ECG. If the results were all normal I wouldn’t have to see him again. And I’m pleased to say I never have.
Then came the full body CT. I would quite happily trade my MRI’s that I must have every six months for the CT. It is a calm and serene experience. There is no noisy banging going on. I actually could have fallen asleep if my stupid brain wasn’t in overdrive worrying about what it could see. My thigh had been aching for about ten days. These was bone mets I had convinced myself. Welcome to the world of life post diagnosis, where every headache is a brain tumour, every cough is lung cancer, every sore throat is…you get the picture. However reasonable you try to be it slowly creeps into your subconscious. Just lurking there. Waiting for you to close your eyes and drift off into a peaceful slumber so that the fear and shock is worse when it grabs you and shakes you awake at night. There is no one else awake at night so you can’t whisper “I think it’s spread, I think I’m dying” And would you want to say that to your loved one anyway? As he is also thinking “I’m scared it’s spread. I’m scared you’re dying.” So you lie awake, frightened, waiting for morning to come and relieve you with slightly more reasonable thoughts.
I was waiting for my CT results. I had a few more days to go. The days are endless when you are waiting. I wanted to fast forward time but would then start to think if I don’t have much time I want it to travel at the pace of a snail. An e-mail arrived from my jolly oncologist, the liver mets guy, ‘just to inform you the pet scan results are normal. see you in six months.’ I stood in my kitchen and cried. Suddenly these little bits of good news seemed to be coming my way. Luck appeared to be on my side. Maybe through all of this I would be O.K. It was these little bits of hope that slowly repaired the damage and trauma I had been through. I just needed them to keep coming.
My youngest daughter had called me in tears. She wanted me home. She couldn’t understand what was taking so long and why she couldn’t visit. I made the mistake of telling her I would be home the following day after surgery. I was now under pressure to make sure that this would definitely happen.
I had a visit from my eye surgeon to check things were going to plan. I happened to mention that eye surgery sounded disgusting, so I didn’t need an explanation of what she had done or what she was going to do. She replied that she thought midwifery was disgusting?! Now I obviously wasn’t going to get into a game of top trumps with her, but we all know the popular programmes on the telly happen to be ‘one born every minute’ or ‘call the midwife’ or ‘too posh to push’ etc. Nowhere in the telly listings do I see a ‘not to be missed’ eye surgery documentary, or a ‘day in the life of an ocular oncologist.’ I obviously didn’t say this to her, I didn’t need to make her feel bad and actually I was incredibly grateful that she didn’t find fiddling around with the blob of jelly in my head as repulsive as I did.
Surgery was to be on Thursday evening, so I would be home late, but home I would be. My bags were packed. Surgery was to only take about 20 minutes so my husband was told to get the cab on speed dial.
This is where things turned a little strange. While I was under the anaesthetic I felt as if I could feel a tugging on my eye. I picked up my arm to push whatever was there away and then went straight back to sleep. I felt no pain, or panic, just a tugging feeling. While in the recovery room I said to the nurses that I thought I’d woken up. I was reassured that that was highly unlikely. I returned to my room and retold the story to my husband. “I think I woke up?” We agreed it must have been my imagination. The cab was called, I was dressed and ready to go. My eye was covered with a patch and I had numerous drops that I was to put in my eye over the next couple of weeks. Before I left the anaesthetist popped in to check I was O.K. I explained that I was fine but I thought I had woken up. She confirmed that I had woken during the surgery, but this had been controlled and planned. She explained that on my arrival in the hospital on the Monday the ECG had shown abnormalities. They had to make a decision on what to treat first, the heart or the tumour. They decided on the tumour and felt it best for me not to know about this until my radiotherapy had finished. They gave me a light anaesthetic as they were concerned. They also gave me a light muscle relaxant so that if I started to wake I would move and let them know. She gave me the name of the heart condition she thought I had and told me to make an appointment with a cardiologist. She also told me not to google it. “Don’t frighten yourself Ruth. Go home and rest?!!!!”
Am I wrong in thinking everyone would be frightened? Two weeks previously I had been told I had cancer and now I was being told plus a juicy topping of heart defects. I was stunned, vulnerable, shocked and annoyed. I felt fine. My eye had felt fine until I was told about the tumour and my heart had felt fine up until that point. Have I not told anyone I RAN THE BLOODY MARATHON! Of course now to add to my fear of not being around to see my children grow up due to cancer, I was starting to think I going to keel over and die if I took the stairs too fast due to a heart complaint. I needed to get home and google it, but in the mean time my sister called to check I was fine and on my way home. She didn’t expect my raw response as I told her what had happened. I could hear her tell her husband “Ruth woke up during surgery, they think she has a heart problem!” We couldn’t speak anymore. We were all too shocked and utterly exhausted. There was nothing left to say. It was what it was. I had hit forty and my stupid body was crumbling at the seams. There was nothing any of us could say. We travelled home in shocked silence form Moorfields hospital to Hampton. I was numb and devoid of emotion. My husband was given the job of keeping everyone away. Fielding calls, putting off visitors. I had no energy, I just felt traumatised and when you feel like that you can’t verbalise what has happened. It makes you relive it. So I didn’t. I stayed in a cocoon at home, only emerging for all the hideous hospital appointments.
And I still hadn’t looked at my eye. I was going to need Valium.