So today was the first time that I have been properly alone since the op. 5 days post ‘eye removal’ and Mr me-myself-and-eye returned to work, the kids are at school and it is just me, trying to manage my jumbled up feelings and emotions. I knew that my gorgeous friend Hels Bells was coming over with Krispy Kreame donuts at some point, but I had the morning to navigate through first.
I know that I have mentioned it before but the strange perspective that only having one eye brings is really disconcerting. I will get used to it and my brain will adapt, but at the moment my brain is still in the ‘what the f**k is going on!’ phase. This morning i walked. It felt a bit more monumental than yesterdays as I walked down to my office in Chapel Town (approx. 2.5 miles away…. shhhh don’t tell Mr me-myself-and-eye) This walk meant navigating quite a few road crossings, pavements and the well known ‘Chapel Town gauntlet’ where you never quite know where the cars are going as ALL indicators in ALL cars seem not to work here. I kept doing that thing that babies do when they are learning to walk and pick their legs up a bit to high when they are walking up steps, or misjudging the down step and their feet hit the floor before they are prepared which leads to an off balanced stumble… there was a fair bit of stumbling and laughing at myself. The flag stones on most of the pavements are unequal (I may write to the council about that) and so I had to look down pretty much all of the way to make sure that I didn’t trip over any corners, but by doing that I almost walked into several people…. I think that having my patch on excused me a bit….people looked at me in that odd ‘I wonder what she has done’ kind of way…..I had started to walk with my headphones on, thinking that listening to a nice podcast on a glorious sunny day may brighten my spirits, but soon had to stop as it was really disorientating having two of my senses not at 100%. Each time I had to cross a road, I stopped and checked every single way about 50 times, just to make sure that I hadn’t missed a rogue cyclist, mobility scooter or a grey car (I don’t know why, but the grey ones are always the hardest to see) I did make it to my office…. went inside…. listened to ‘woman’s hour’ and then caught the bus home…. not a huge achievement for some, but it made me feel like Dicky Rock, it was something that I had done on my own!
It’s not just the walking that has a different perspective but also how I see myself. Sounds strange, but at the moment when I look in the mirror, what I see is very distorted…. it’s like I am looking in one of those funny fair ground mirrors… the top half of my body looks long and thin and my bottom half looks…. well….. short and like my arse has exploded on each side…. again I know that this isn’t the reality but it isn’t the best thought in the world and it is making putting on bottoms quite tricky as I have no concept of what they really look like…. I mean it’s not as if this is a major tragedy in the grand scheme of things, but it is going to make shopping for trousers very annoying…. When I looked at my jeans this morning, I got really frustrated and wanted desperately to rip the eye patch off and to be able to see myself properly! I think that I may have to audition my friends to see who can be my ‘jean buying’ friend who can be responsible for me buying a flattering pair of jeans… (cripes, if Mr me-myself-and-eye reads this, he will probably choke on his coffee as he thinks about the 50 billion pairs of jeans that I own and how I definitely DO NOT need to buy any more…. EVER.)
I also found the application of makeup a tricky experience this morning… again, not life threatening and to be honest I barely wear the stuff but this morning I wanted my remaining eye to look a little bit less like it had shrunk into the mashoosive bag that is a permeant fixture underneath it. So I got out my mascara and eye liner and tried to apply…. mascara, tricky but manageable (after applying it to my nose at the first attempt) eyeliner, bloody impossible…. I needed to close my eye to apply it to the top lid…. errrr how the heck is that meant to work then? They don’t tell you these things BEFORE extraction do they?! (yes I appreciate that Dr Salvi had more important things to think about) I did attempt to apply the eyeliner but then gave up as I was starting to resemble Alice Cooper…. I stuck with the mascara and I think I may have to You Tube eyeliner application….. oh dear lord, wtf…. please can someone come and slap me in the face if I every actually do that…
In other news, I now understand what the hospital meant when they said do not make any important decisions for 24 hours after surgery….. I somehow ordered 100 or so toilet rolls which were delivered yesterday…. I must have been panicking about Brexit post op… and I had 10 pairs of ‘fashion’ glasses delivered today from Claire’s Accessories…. two reasons why these are useless… 1. Because they are children’s sizes and 2. I actually wear glasses and have a very nice pair that allow my to see properly out of my right eye which I will start wearing again once my patch comes off…. and so there is absolutely no point in me owning 10 pairs of glasses that I can’t see out of…and don’t fit. The irony of my new earrings does not escape me either….
Can someone remove my credit card from me please!
Captain Corne x
As far as Saturdays go, yesterday was pretty rubbish. I had an appointment with a nurse at 9.15 which meant that parkrun was out of the question (a weekly ritual for me) and it meant that the kids missed out on their cycling/running fix, which, if any one knows my two chiblets, knows that missing out on activities spells trouble for the rest of the day.
The pressure bandage came off which was a relief, but it did leave me with my eye looking like I had had an argument with someone who has a socker of a right hook…. it is swollen shut, very bruised and pretty grim….. I think that I prefer that at the moment though so I can get used to it before it starts to open and I see what is in there…. I don’t have a prosthetic at the moment, just a plastic ‘conformer’ which is keeping the shape of my eye…. it makes me feel a bit queasy thinking about it tbh…..
As a family, we usually spend the majority of our time outside, either running, working, walking, hiking etc… and so find it challenging to say the least when we all stay inside…..together…. in fact, we find it so challenging that on Christmas day, we decided to hike around the Cow and Calf in Ilkley and have our Christmas dinner out on the Moors…. we just seem to be a lot nicer to each other when we are all outside….. It’s not to say that I or we have to stay inside at the moment, it’s just that I am so bloody knackard that I’m having at least 3 naps during the day (this is totally unheard of for me, I never even took day time naps when my kids were born!) The kids ‘challenging behaviour’ yesterday could not even be shifted with the creation of a pirates ship in the kitchen (I was feeling so smug that I had a legitimate right to be an actual pirate….) oh and the pirates ship was made (and is still there this morning) in a really convenient place right in the middle of the kitchen with just small gaps around to navigate around…perfect for old patchy here….
So today, in an effort to be nicer to each other, we decided we needed a relatively ‘normal’ day…. so up and out to junior parkrun, the kids then went off with the Hobbs/Vennings for some form of outdoor adventures in some random woods…. I donned my bloody awesome orange Nike trainers and have been for a short ‘power walk’… which felt very strange like I was swerving around from side to side (imagine how you walk after you have had a skinful of gin…) and Mr me-myself-and-eye is doing some form of car maintenance to make sure I can drive it in the next few weeks. I certainly need a nap now…..
So slowly things are returning to normal… well to as normal as they can…. I was going to include a picture of the offending eye, but it is pretty grim at the moment so I will wait until the bruising/swelling has gone down a bit.
Oh, and just to add insult to injury…. THIS popped up on my phone on Wednesday…. ffs!
Over and Out.
Captain Corne xx
So here I am, I made it to the other side and a different adventure begins here. I genuinely feel that writing is helping me process everything that is happening so please forgive me as I ramble my way through (oh and please forgive the typing… my excuse is that I only have one eye now!)
Saying goodbye to the kids on Tuesday night was possibly one of the worst experiences throughout the whole of this. My rational brain knew that I was going to be ok, but the irrational side of me made sure that I squeezed them extra tightly and smelt their hair just in case it was the last time. An emotional goodbye and we set off to Sheffield. It was really strange arriving in Sheffield to the hospital that was pretty much closed, visiting hours had just finished and there were streams of family and friends coming out of the hospital as we picked up the keys to our overnight accommodation. A basic room where every single spring could be felt through the mattress, but very grateful that we could stay in the hospital ready for the next morning. I think that watching ‘The Great British Bake Off Stand Up to Cancer’ may have been a mistake though as my already fragile state was sent over the edge with their story of a child battling with the a dreadful form of cancer.
Another sleepless night and I was up early on a beautiful Spring morning ready for the day ahead. I’ve always said that the NHS staff are bloody amazing and today was no exception. They gave me time, they were patient with my silly questions, tears, dreadful sense of humour and random anxieties and helped calm my nerves (I was also quite pleased that Mr Salvi wasn’t wearing his jazzy socks to theatre…) they made sure that I understood what was happening and drew extra arrows towards my left eye, just to make me feel comfortable that they had the correct one….and then it was time for me to go… a huge bear hug from Mr Me-Myself-and-Eye and then the long walk to the theatre.
There are a LOT of people involved with an operation, more than I expected and certainly more than is depicted on an episode of Grey’s Anatomy… (note to self, do not take what you see on that programme as gospel as to what happens in a hospital) The theatre itself was really quiet as they asked me again to confirm who I was, checked my QR code on my wrist band… yep really, you get a QR code! and then the Anaesthetist popped in the cannula. The last thing I remember is Mr Salvi wiping the tears away from my eyes….
Coming round, I felt like I had had an AMAZING sleep, I had a cracking head ache and the oxygen mask was annoying (as was the whopping great eye mask that I had on) but I felt like I had had a great nights sleep! I must have dosed off again because before I knew it I was up on a ward (either that or I had time travelled…. I actually like to think that it was the latter) I brought the average age down on the ward by 40 years (there is a theme to me being the youngest…) and the heat was approximately a billion degrees, which was pleasant…. and just to add insult to injury I was placed by a window that wouldn’t open, so I could see the beautiful Spring day and right across Sheffield, but there was no way I could access it….
I didn’t have my phone on me to send amusing messages or mindlessly scroll through facebook and so I had to just lie there and chill out before the hubby arrived. Time passed by being offered 4 cups of tea…which were all passable, thank god, and making friends with the lady in the next bed who was 80 and had 3 children, 6 grandchildren and was one of 11 herself.
The rest of the day was pretty uneventful and I was surprised at how good I felt… It could have been because it was international happiness day, it could have been all of the positive thoughts and love that were sent my way or it could have been the wonderful drugs that I was on…. I think it was a combination of all of them!
Mr Me-Myself-and-Eye arrived with my phone and Sushi and we both sat and chatted and took some silly selfies…. it’s actually quite possibly the longest time we have spoken without being interrupted since having the chiblets….. good to know that we don’t have to do that again for at least another 7 years…. I was especially grateful when he informed me that he had packed his running kit to go for a little run the next morning and he was looking forward to his award winning breakfast in his boutique hotel that he had booked….. I had a feeling that this was turning into a mini city break for him….
My lovely nurse Rhona popped up to see me before she went home, as did my Dr who had a massive smile on his face and told me that it was his best operation that he had had in a month! Not really sure how to interpret that… did that mean he was utterly s**t before hand or had messed up a load of ops in the month before….? I had reliably been informed before my op that my Dr was ‘world class’ and the ‘best that there could be.’ Obviously that made me feel great, but also got me thinking that they must say that to everyone? They are not going to go around saying…”Well, we couldn’t get you the world’s best, so we got you the second best…. they are a little bit c**p but they get the job done…”
Once visiting hours were over and everything started to wind down for the night, I could feel the panic starting to descend. I am really good at quietening down my Siren voice in the day and pushing away negativity, making sure that I fill my heart with positivity, love, life and Mini Mermaid, but at night, Siren can get loud and wants to take over my heart and head. Hospitals are really strange and eerie at night time, it’s when the cries and pain are at their loudest and sleep isn’t really an option. The last time I had to stay in hospital was when I had my kids and the night was filled with the cries of the new lives, mumma’s walking the corridors settling their new charges and midwives and nurses chatting happily and helping feed the little bubbas. This time is was very different, the cries were from people in pain, lonely and scared and it was hard to block the sounds out, I wanted to go and help comfort people but couldn’t. In the end I plugged my earphones in and listened to radio 4, waking up probably every 30 minutes or so but feeling comforted by the shipping forecast, the world service and the classic, farming today.
So there we are, it’s done. A new stage of my life now begins. It’s going to be a bit different and at times challenging, but my cousin reminded me of a phrase I said to her when I took her out on a very pleasant 3 mile run 13 years ago ‘You’re a Corne, we don’t give up’ I am certainly going to embrace this with each new stage that this one eyed business brings… thanks Becks!
I have very strange feelings about social media and how it sits with me and what it means to me. I tend to use it to share my incredible wit… and to do a bit of mindless scrolling and stalking, but I felt that I wanted to share this ‘journey’ that I am on (is it wanky to call it a journey?), if only to raise awareness of ocular melanoma and encourage people to have their eyes (and anything else) checked. Our bodies are incredible machines but just like everything, they need looking after….
The response that I had from my faceache post has been overwhelming and floored me quite frankly, people have been so incredibly kind with their thoughts and words and I feel humbled that they took the time to share their positivity.
Some of my other thoughts from last night and this morning when I was awake at 1,3,4 and then gave up and got up at 5.
-I am going to have to spell check the arse off my blog if people are actually going to read it (apologies to all of my English teaching friends… and especially to Anna Hobbs who I know will be tutting reading this…)
-I need to learn how to spell enuculation…. I don’t even think that is correct.
-My Dr is called Mr Salvi… not Salvador Dali….(good luck with that one when you are off your tits on meds – that is a note to myself…)
-My ploy of making everyone think I am a super positive person has worked… little do they know that I am actually a miserable old git.
-Diazepam is a remarkable invention.
-I am worried that the tea in the hospital is going to taste like luke warm dishwater and having only just discovered the joy of Yorkshire ‘builders’ tea, I am not prepared for substandard tea.
-How do I pretend I don’t have a cold so the operation isn’t postponed?
-I miss my big brother a lot.
-My family are THE BEST… and yes I am including Mr Me-Myself-and-Eye in that… begrudgingly….
-Why can my 6 year old not just talk at a normal volume…?
-Where can I get jazzy eye patches from? (Although the one made for me by one of F’s best friends is lush)
-What will happen if I actually die?
-Has anyone else read Sarah Kane? Her play 4.48 psychosis really played on my mind when I saw the clock tick over to 4.48 this morning?
It’s daytime now though and I’m packing my day full of things to do before heading to Sheffield, it leaves me with little time to think about ‘stuff’ which is a good thing.
Thanks again for all of your good wishes.
Captain Corne x
I’ll be honest, I am starting to panic a bit. The general anaesthetic, the removal of the eye, and what I will be left with (i’m thinking of that dude from Robin Hood Prince of Thieves) is getting a bit too much…. Normally running gets me through anything, all my weird anxieties and worries and I have been continuing to run through the last couple of weeks since I was diagnosed (with some hideous sessions being given to me by coach Hobbs) but today I had to reach for something a bit stronger to help combat my anxiety… I guess this is what drugs are for! It seems to come in waves, with me worrying about different things, from not actually waking up from the op to what the actual ‘new eye’ will look like, to people running on my left… I’m not eating or sleeping very well and i’m struggling to stay positive all of the time….. I know that this is all normal and for me I need to feel all of these emotions to be able to process stuff, but it is just a bit wearing…
I have actually also been overwhelmed by my community, family and friends and what they are doing for me. From sending flowers, making the family food, drinking gin with me, heading out for random family days out and ringing and texting. I feel so much love and support around me it makes my heart swell. To all of you, THANK YOU, you are my squad, my cheerleaders, my team, I could not do this without any of you. I am also especially grateful to the OculMel support group that I have joined that have been the calming voice through my crazy thoughts. They have made me laugh, reassured me and sent pictures of their prosthetic eyes, a blooming wonderful group.
Ocular melanoma and particularly the type that I have is so bloody rare that not that much is known about them, how they are formed or what can trigger them, it makes it difficult to find out much information. I know for me, there isn’t much treatment choice because of the size of the tumour, the fact that it is a vascular tumour, where it is and the fact that it is almost coming through my eye (gross I know) and the fact that I would forever be living with a sleeping time bomb, never knowing when it would come back or even where the secondary tumour would appear. it doesn’t make the choice any easier though.
So here I am, it’s Monday, I head to Sheffield tomorrow and my op is scheduled for Wednesday morning. I am battling with a head cold also which isn’t great but I am going to do everything I can to make sure that I am on that operating table ready, I cannot postpone the op, my nerves would not take it!
All I can ask is that you all send positive vibes to me and channel all of your Mini Mermaid strength to me over the next few days.
I’m not quite sure how I feel about my impending op…. I keep having massive lows where I just want to sit and cry for hours to feeling bloody lucky that it hasn’t spread…. it’s exhausting and I do feel that they joy has been sucked out of me and I have become a bore about it…..
I have invested in a couple of eye patches to start to train my ‘good eye’ in what it will be like and quite frankly it is utterly shit. My vision is blurry, it takes a while to focus if I move my head quickly and I have a strange funky, fuzzy rainbow thing going on in my ‘bad’ eye which is really distracting. My depth deception is dire and I have nearly knocked over my G&T on an evening several times (tragic) I’m not sure it is helping me or making me panic and feel helpless. It doesn’t help that Mr me-myself-and-eye tried on the patch and claimed that he didn’t see the problem with it and he could see easier with it… ffs….
My enoculation (I’m learning all the lingo) has been booked for the 20th March and I’m desperately trying to get everything done work wise before then. Trying to pass everything I can to my incredible Mermaid team (Khara and Colleen- big up to you both!) I’m also trying to get in as much running as possible! I entered a random 5km race in York last night (14th March) in the hope of ducking under 20 minutes. It wasn’t my night though and I stumbled around in 20.40. – Big shout out to my Valley Strider team mates who not only drove me but ran like the wind…. in the wind…!
So today (Friday) is all about making sure all work stuff is sorted and the house is tidied (in my strange mind, I want it all sorted in case I don’t wake up from the op) and then trying to stay strong for the hubby as he has to deal with his mum being poorly (it never rains and all that….)