Remission

 

unknownThe main bulk of my blog has always been written in hindsight. I’ve been talking about what has happened in the past.This has been good as it gave me time to sort out how I felt,  time to reflect and make sense of it all before I started blogging. People have said I am brave to write the blog but I’m not really, as it isn’t so frightening talking about how scared ‘you were.’ Much more courageous are those that admit  how scared they are.  So I felt a little more apprehensive when everyone was up to date with my story. I still don’t blog just before an appointment as I really don’t know what to say other than I’m scared. Go quiet and just talk about it after the event is my strategy.

So there I sat on Sunday knowing I had my eye check up in the morning. Now for me this was no biggie. That is the liver scan, but the eye appointment does still have an impact. I wasn’t worried as I now know the signs that something is wrong. I had had none of these. No flickering or flashing lights. Eye sight had settled. I could actually say I had sort off forgotten about my eye. But with my appointment there in my diary I felt really pissed off. I resented the bloody reminder that something was wrong. I was tempted to cancel it but knew I just needed to do it. On the train journey up I realised I couldn’t remember the size of my tumour. I needed to know so I could tell straight away whether it had changed. I couldn’t believe that I couldn’t remember. How could I forget something like that? I realised it’s because my life really has moved on. This whole story is becoming something of my past where I can’t quite recall the finer details. Anyway, what did it matter?  The f**ker would still be the same size, so I would be reminded soon of the measurements.

First came my eye test. An improvement! Yes, I could read the whole line below my previous recording. How was that possible? Not sure. Luck? Next came the drops, the examination, the measurements, the pressure check, the ultrasound and unbelievably my tumour has started to shrink! It was 1.2 by 8mms. It is now 1.0 by 7.5 mms!! I have wanted that f**ker to shrivel up and die since I had radiotherapy and now finally, 16 months post surgery it is shrinking. The fluid? Gone! My eye consultant looked ecstatic. “Marvellous news” She kept repeating. “Fantastic we treated it so early. Yes there is loss of sight but your tumour is inactive. I would explain it as remission. Your tumour is in remission.”

I looked up the meaning of remission when I got home, just to double check that what I was thinking it meant, was actually the case;

Complete remission means that tests, physical exams, and scans show that all signs of your cancer are gone. Some doctors also refer to complete remission as “no evidence of disease (NED).” That doesn’t mean you are cured.

Was I ecstatic? No. Confused? Yes. But I still have to have my liver scans I kept thinking. How does this make anything better? The liver scans are what frightens me. My husband and myself hugged goodbye “Good news!” Yes good news we agreed. Was I a little scared to feel happy? I suddenly felt slightly vulnerable stumbling along, as if someone was going to call me back, “Wait Ruth! We were wrong you do still have it!” Those that know me well, know that I really don’t need any excuse to celebrate and pop open a bottle of bubbles, but this didn’t feel like I should be doing a celebratory dance and I was unsure why. The train journey home I sent texts to my sister and mother-in-law who were waiting to hear;

‘All good. She actually said “your tumour is in remission!”‘

I wondered if I would receive a confused text back. Remission? Really? What does that mean? A mirror to my own jumbled thoughts. But what I received were all the whoops and congratulations that just show how relieved and happy people are for this piece of good news. I felt apprehensive. Was this all a bit premature? I picked the kids up from school and sorted all the usual stuff out while it was milling around in the back of my mind. Remission? And then I received a photo from my mother-in-law. It was of her  and her husband holding a glass of bubbly in their hands toasting me. They looked so happy. Relieved. Emotional. And I cried, Then. That was when it sunk in. I don’t have eye cancer anymore. I had eye cancer. And this enormous gulf of emotion suddenly threatened to come pouring out. Tears for what I have come through. Tears for those that are still going through it and tears for those who are just starting it.  It is f**king shit. No other words to say about it. Cancer is just that. Shit. But this was good news. A hurdle I had overcome. I decided then to share it with my friends. I had to celebrated this and not think that my liver scans are still there looming over me. I will have constant surveillance and will be scared, but today, things are good. I quickly scribbled a Facebook status about being in remission before  racing off to a school meeting. Yes all the normal stuff like life just continues you know? And the wine needed cooling! Did you really think I was going to pass up a chance to have a glass of champagne?!

My name is Ruth. I’m 43 years old. In 2015 I was diagnosed with eye cancer. Today, in September 2016 I am cancer free! Whoopee!!!

Hmm…I don’t know.

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Sometimes (most of the time) I sit at the keyboard unsure of where my blog is going. I feel I have only one sentence to write so it’s not really worth a blog, but then my verbal diarrhoea kicks in and I realise I’ve written quite a bit. Today though I think its going to be a short one because I know I have no answers to what’s on my mind.

A few weeks ago I was talking to a friend who had recently been given the ‘all clear!’ Happy days. He will remain being checked for 10 years but it has gone and is very unlikely to return. Fantastic! He asked if I was the same? All clear with regular checks? My answer is always a little tricky. Do I lie and continue along the jovial lines, smiling, laughing and high fiving each other? Or do I pop everyone else’s balloon around me? Will I then become the miserable bitch that no-one wants to see, because my life and my truth is too painful and hard for others to deal with? It casts a cloud on your sunny day. It’s difficult isn’t it? I spend most of the time happy and smiling in the belief that the f**ker won’t return, but if you ask me a question, should I tell the truth that  50% of ocular melanoma patients develop liver mets?  It is then terminal. Or should I lie and protect my interrogator? Rightly or wrongly I don’t protect my family and friends, they get the truth, warts and all. This is  because I need to feel I’m not alone with my fears and concerns. A problem shared is a problem halved and all that. So my reasons are entirely selfish, I’m looking for help. Those kind enough to ask but who are not in the ‘inner circle’ are treated to a “yeah fine” when enquiring after my eye. I know they secretly breath a sigh of relief and that’s fine too. My husband says I shouldn’t worry about these things, but I do. I don’t want people to avoid me or feel uncomfortable around me, just like I don’t want to avoid people and feel uncomfortable around them. So everyone is after the same thing, it can just be a little awkward getting there. My blog allows me to answer a lot of difficult questions people have and helps me to avoid uncomfortable conversations. But to me humour is the main thing that breaks down the barriers. At a recent family event my brother-in-law turned to me saying “yeah yeah, don’t come with your eye cancer story, you’ll get no sympathy from me. Ooh I’m deaf in one ear and going blind in one eye. Doesn’t wash. Go and get a round in.” And I loved him for it.

But I’ve digressed. My reason for this blog, my question that I have no answer to, is what most of my friends ask when they are told the truth. What my ‘all clear’ friend asked when I didn’t join in the happy dance. The question I get time and time again is “God. How do you deal with that?”

Answers on a postcard please xxx