Month: May 2016

I need Valium

~ justaneye73 ~ 1 Comment

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.

I’m radioactive

~ justaneye73 ~ Leave a comment

The week was passed with visits from lovely family and friends. Drops being put in my eye four times a day from the lovely nurses at Moorfields. I was scared every time the patch came off, I didn’t want to look and would ask the nurses if it looked disgusting? “No it looks good” they would reply as only medical staff can. I’m sure if I asked any of my friends to have a look I would have had a more honest response. I actually looked forward to the dressing changes and drops, it felt soothing.

So I would wonder around my room with a little machine that I was told to use to check I was still radioactive and the disc hadn’t fallen out. Fallen out? A piece of metal sewn to my eye the size of a two pence piece could fall out without me knowing? I think not.

I had noticed that when the patch came off I could see normally. I hadn’t noticed any double vision. This was a good thing. So naturally I also started to think I wouldn’t go blind in that eye either. I would soon learn that that was far too optimistic.

During a visit from a good friend we started discussing how to tell other people. Mutual friends were starting to question why I wasn’t around, not returning calls etc and she was finding it difficult to fend off questions and lie for me.  I hadn’t realised the pressure I had put on others to ‘keep it quiet.’ My main reason for this had been because I didn’t want the children to find out, but now they knew I was in hospital, although not the real reason, I felt I should tell people. I had managed to speak to the majority of family and close friends and I decided to let everyone else know by Facebook. I couldn’t call everyone. My Facebook setting is private. I don’t have hundreds of friends. Everyone on my list is someone I like and care for, so it seemed the easiest option. I hastily sent two messages to two very dear friends I hadn’t spoken to and then posted my horrible news.

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It was done. I felt relieved. I received lovely messages from people, this meant so much to me and made me smile. Thank you to you all.

I then had a perfectly timed visit from the anaesthetist to let me know that following removal of the radioactive plaque on Thursday evening, I could go home. It might be quiet late and I might prefer to stay another night. She hadn’t even finished speaking as I was chucking all my belongings in my bag. There was no stopping me now. I wanted to go home and see my children.

 

Welcome to Moorfields

~ justaneye73 ~ Leave a comment

This was my first visit to Moorfields eye hospital, and it was going to be a long one.  We arrived at Old Street station and followed the green line that is painted on the floor from the station to the hospital entrance. It is raised so that those with limited sight can feel it with their stick. Very clever.

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I was admitted to my home for the week. Bloods were taken, and an ECG was done to check I had no heart abnormalities before surgery . I then went downstairs for a chest x-ray and more photos of my eye. Whilst having my chest x-ray, the young Australian guy doing the x-ray informed me that “everyone in Australia has a melanoma.” Everyone?!  I think he was just trying to reassure me that it isn’t that abnormal and that the Australians aren’t all dead. Which of course was very kind, but he was a little confused between skin melanomas and those of the eye. Same name, very different. Skin cancer is more risky in sunny climates but eye cancer isn’t. The sun isn’t a risk factor. But people try to help with whatever comes to mind, such as “thank goodness it’s the same side as your deaf ear. You ignore everyone on that side anyway.” As a dear friend reassured me. Yes.Thank goodness.

I then a had a visit from my eye surgeon so she could put a large felt tip pen on  my head.

 

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This was my opportunity to just check a few things that had been bothering me. She had told me that I had a risk of going blind in my bad eye within two years post treatment. I wanted to know if this was just a risk explained to everyone or was I more at risk. “You are more at risk.” I was told. I could also suffer from double vision post surgery. This is usually alleviated by an eye patch. Eye patch?! Bloody hell I only need to breathe next to my kids before they start telling me I’m so embarrassing, imagine having to rock up at school with an eye patch? A good friend offered to have a look in Claire’s accessories  for some slightly kinder looking ones, but I thought I’d end up looking like a pirate on a hen do. Thank God it was the summer, I would just hide behind my sunglasses.

It’s terrible to feel worried about your appearance when there are obviously more pressing matters, but you do. And it’s all relative. I remember when I was first told about the tumour I thought, just remove my eye. I didn’t care, I wanted to live and see my children grow up. I could maybe put it in my husbands beer glass to scare him like ‘Mrs Twit.’ But when I was told that wasn’t necessary, I suddenly desperately wanted to keep it and felt bad that I was so willing to trade it in without a fight. So now here I was thinking about how ‘normal’ I would look post surgery, as I didn’t want to look ill. I didn’t want to stand out. I didn’t want that awkwardness when people ask what’s wrong with your eye? “Oh just cancer. Anyway, how are you?” And I didn’t want a  big marker pointing at me shouting “this is it! Here is the cancer!”

I had read all about the surgery. I had asked an enormous amount of questions to all the lovely people who had been through it before. I knew what to expect. So when I came back from surgery holding onto my sore eye, wretching violently into a kidney dish, I was a little surprised. No one had mentioned nausea. People had explained it as ‘a little uncomfortable.’ A little uncomfortable? This little discomfort and nausea plagued me for the week. I stopped eating (down another dress size) and had regular painkillers and anti-sickness tablets all week. The nausea was the worst. But if it was making me feel that bad imagine how it was making my tumour feel. It would be burning it to smithereens and it would all be worth it.

Ticking off the to-do list

~ justaneye73 ~ 2 Comments

Surgery was booked for Monday and I had a few things to do first. What I had been putting off the most was reading up about the biopsy and making a decision on it. I had been told that a biopsy could be done of my tumour. It would give me an idea as to whether or not by tumour was aggressive. It is not 100% accurate, but pretty close. There is also a tiny, minuscule risk of seeding. This is where when they try to take some cells away with a needle they accidentally let some loose to cause damage elsewhere. This biopsy could be done in Liverpool and would need to be done before my radiation treatment. During this time I joined the wonderful eye cancer charity, Ocumeluk, which offers all the information and advice you may need on eye cancer. They also have closed Facebook groups which I joined to moan to my heart’s content. Asking for people’s feelings on whether to biopsy or not at times seemed like I had opened a can of worms. I was hesitant, I didn’t think I wanted to know whether it was the aggressive type or not. I felt I was definitely in the minority. This was when I needed to take a step back. I came off the group site and read information on my own. During this time I had some wonderful supportive messages from people telling me to trust my own judgements.

The hard decision was eventually made. I decided not to biopsy. It wasn’t an easy decision but it had a number of contributing factors. The idea that there was a small risk of seeding was a risk I didn’t want to take. Many people offering me advice had larger tumours where you could argue it’s easier to take a biopsy from or eye removals where biopsy risk is negligible. The tumour in my eye was only 1.2 mms in-depth. I think you would need a pretty steady hand to insert a needle and aspirate some cells, I’m not saying that my eye surgeon had shaky hands, but it was just a risk I was unwilling to take.The other reason was that I would have wanted only a positive result. If I was going to die in five years I would rather not know thank you. I want to enjoy very day and can only do that by knowing I have a future, not crying for what I am about to lose. Everybody’s decision is completely individual. I felt under pressure to quickly make a decision before surgery and I worried I would regret the one I made. A year down the line I have no regrets. If I could be biopsied tomorrow, I still wouldn’t unless it had an effect on my treatment. I am never happier than sticking my head in a big pile of sand while sharing a cold glass of bubbles with anyone that can swallow.

Next on the to-do list was what to tell the children. It seemed pretty apparent from people with experience of cancer, whether personal or in the professional capacity, that it is not a good idea to keep the children in the dark. They start to pick up on things and often their imagination is far worse that the reality. But I just couldn’t. I didn’t want to upset or worry them. I didn’t want to see them cry, but most importantly I didn’t have the emotional resources at that time to reassure them that everything would be ok, and until I could do that then they were joining their mother in the dark while I had my head in the sand. It was the cowards option but worked in the short-term. So with a brave face I dropped middle daughter off to the school coach for her trip to France. I desperately wanted to squeeze and smell her, cry and tell her I loved her, but instead I smiled bravely, told her to have fun as my independent eleven year old didn’t even take a glance my way as she bounced onto the coach to join her friends. I cried on the way back to the car.

Next was youngest daughter. I had to tell once her sister had gone and I couldn’t put it off. So mid morning, while she was in the bath and I was brushing her hair I asked her if she remembered my eye test. I explained that it was all a little odd as they had found a freckle in my eye and seemingly if left these freckles can make you sick. she asked me how sick, and whether I could die. I lied as I told her that they couldn’t make me that sick, but just a little. Also I would be going blind in that eye (had I forgot to mention that other bit of shit news?), but it would all be ok as who needs two eyes anyway? The hardest thing for her was that I would be in hospital for the week and she wasn’t allowed to visit. Due to the radiation under 16’s were not allowed in. This made her suspicious that things were worse than they seemed. I reassured her that I would FaceTime her and more excitedly she was going to one of her school friends every day after school. I think she even had a sleepover on that first night which was definitely unheard of on a school night.  Plus I had spoken to her teachers and requested no homework all week. No Homework, sleepover’s and play dates everyday? She was ecstatic and I was starting to worry that a week in hospital wasn’t quite long enough. She was starting to see the benefit in this “naughty freckle” as we were now all calling it.

My eldest daughter was meant to be at uni, but like all best laid plans, decided to return for a few days in between exams. Being nineteen meant that I had to be honest with her. I reassured her that it was small and caught early but pleaded with her not to google it as it sounds hideous. I started telling her of all the people I knew with really bad cancer who were still around to tell the tale. “Look at so-and-so, she should have died years ago, she’s still here! And what about what’s his name? Walking corpse but still around. And you could die in a car crash tomorrow, but don’t go round worrying about that.” So all in all I think I managed to reassure my children that there deaf in one ear mother and soon to be blind in one eye mother would be around for years to come. Lucky them!

With most of my list done there was only one thing left to do. Pyjama shopping. And I’m sure I probably  enjoyed a sneaky glass of bubbles while doing that too. Roll on surgery, I was now ready for you.

Liver mets guy

~ justaneye73 ~ Leave a comment

A couple of days later I was making the now familiar journey up to London to finally meet my oncologist (Liver mets guy-not eye). And to receive the dreaded MRI results. Taking the train from Hampton to Waterloo I looked around at the other passengers. I still do it now. Trying to imagine what people are travelling mid-morning to Waterloo for. The morning rush of workers has gone, so you are left with the others. Work commitments, lunch dates, shopping, interviews, the list can go on. I always wonder if anyone else on the train has a cancer appointment. I would like to meet them and talk to them and ask them how they feel? I wonder what my journey home will be like? Will I be distraught or jubilant? My phone beeps with messages of ‘good luck!’ and ‘we are thinking of you.’ I want to be the one sending those messages. I don’t  want to be the one on the train.

Well my oncologist is a lovely smiley man. Very jolly. I feel like the cloud of doom walking into his office. Trying to match his sunny disposition, but failing miserably. He shakes my hand “hello!  Your results are clear!” He has obviously been in this position many times. He knows that no one cares about the niceties now. No-one wants a “how are you?” or “how was your journey?” I smile and can match his sunny disposition. I try not to cry. “Thank you.”

We discuss the plan going forward. I would be meeting him every 6 months for the rest of my life to have an MRI. I would also be having a full body CT after my eye surgery just to check for any rogue cells elsewhere. I tell him how nervous I was waiting for the results. He explained that it would have been very unlikely to have had spread to my liver at initial diagnosis. Only about 5% of patients have it in their liver at this early stage. What? Yes he explained in his happy tone, it usually takes 2 years and 10 months on average to travel to the liver. Excuse me? I explain that my tumour is small, tiny, caught very early, therefore surely incapable of taking that long journey to my liver? “Hmm, sort of irrelevant. If it’s the aggressive type, it doesn’t matter how large or small it is.” Sunny smile. I felt like I was going to explode at his jolly attitude. He was very positive as he explained things are moving forward quickly, these new immunotherapies are having wonderful results. My husband asked why I couldn’t start on them right away then? It doesn’t work like that. By now I wasn’t really speaking. I couldn’t match his enthusiasm for immunotherapies. My happy balloon that had inflated over the room with a huge “it’s all clear” banner had just been annihilated. Not popped, but ripped and torn to pieces.

We left the office and replied to the messages from anxious family. “It’s all clear” was sent with the heaviest of hearts. There was no jubilant cheer. I was furious. F***ing cancer! I bloody hated it! I was not going to die and it better not dare go near my liver. I sent an e-mail to my happy oncologist.

“I’m sorry for being so miserable. I am actually determined to be your longest standing ocular melanoma patient ever!”

And I received the most wonderful response from the happiest man to be dealing with the most dreadful disease.

“Glad to hear this positive note! The human spirit knows no limits when it comes to facing up to life’s challenges. I will do my best for you also.”

Well with a team like that survival was the only option.

 

 

Welcome to your first MRI

~ justaneye73 ~ 4 Comments

I was being treated with kid gloves by everyone. Just in case I broke. What they didn’t know was that I already felt broken. Inside. Ruined and diseased. When my husband looked at me I wondered if he thought of the hideous growth in my eye. The cancer sitting there threatening to ruin our lives. Once when he put his arms around me I remember crying as I asked him if he thought about it every time he looked at me. He didn’t. He just saw me. A sad me. But just me.

So for the first MRI it was back to my sister to come with me as my husband went back to work. I was nil by mouth for four hours before. My scan was about midday. I had seen MRI machines before and knew that people didn’t like them as they found them claustrophobic. I was prepared for this. Deep breathing, keep calm, pretend you’re on the beach. I changed into a hospital gown and lay on the table. The machine is curved, white, smooth and looks like it’s from the future. You imagine it will silently glide over your body taking impressive measurements and images. Wrong. It’s bloody noisy and behaves as if it’s something my kids have made.  I actually think if I asked the kids to make a home-made x-ray machine they would place a box over me, bang it about it a few times and make whirring noises. This is exactly what an MRI scan is like.

You have a venflon put in your arm to deliver the contrast, a blanket placed over you to keep you warm and cosy. Or pinned down and trapped. And if you are looking at the size of the hole that you are about to slide into and you’re not worried about it being snug enough,  then worry not,  as they come and place a curved plastic tray over you to pin your arms to your sides so that you really do feel that there is no escape. An emergency button is placed in your hand just to reassure you that this will be a pleasant experience where no one has ever lost the plot and screamed “I’ve got cancer. Get me out of here!’ Headphones are placed over your ears to try to dampen out the deafening noise and you slide into the opening. It is about 5 cms from your nose and covers your entirety. Now close your eyes and just pretend you’re lying on a beach! Yep. O.K.

The couple operating the scanner go into another room so that you are very much alone,  and feeling buried alive. They then speak to you through your headphones. I was  told that I would be asked to hold my breath on and off for the next 45 minutes. There would be some music played. They had chosen Magic FM’s 80’s lunchtime hour. I couldn’t move to start screaming, but as Blondies ‘Denis Denis’ started playing I managed to close my eyes and survive.

“Wasn’t that bad really,”  I managed to croak to my sister as we hot-footed it back to Waterloo. Being nil by mouth all day, having contrast injected into you and knowing there was now the wait for the results, there was only one thing left to do. We headed straight to the champagne bar for a cold glass of bubbles.

The wait was now on. My operating day was approaching. Plans were being put in place for the children and ‘The Fault in our stars’ was doing the rounds. If you don’t know what this is (where have you been?!) it is a teen, pre-teen book and film about teenage first love. The difference being they both have terminal cancer. Everyone wanted to see it, including my middle daughter. “Please watch it with me mum” she pleaded, “it’s meant to be so sad.” So that evening as I was waiting to find out if my hideous disease had spread anywhere else, I sat with my daughter as she sniffled over this teen cancer film. “It’s so sad mum isn’t it?”                                                                                                                                                       “Yes poppet. Really sad.”                                                                                                                               “Mum? Do you think you can catch cancer?” I sat with my arms around her and kissed her sweet innocent head as I whispered, “no sweetpea, you can’t catch cancer.” And if you could I would have caught and destroyed it before it reached the tips of your toes.

 

All just a blur

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I’m not sure how we ended up on a train platform. I don’t remember catching the tube, but suddenly we were standing at Vauxhall or Clapham. The trains were messed up. This was the first moment I had to pick up the phone. I didn’t want to, but made the calls to my parents and sister. I told my sister her feeling had been wrong. It wasn’t all O.K. I had eye cancer. You share all of the same emotions, the shock, disbelief. Running over exactly what I had been told just in case someone notices a lifeline in the story. Hoping perhaps I had misheard or not fully understood. But when everything is repeated all that is left is silence. The confirmation from loved ones that yes you were right. It is bad news.

My dad arrived at Twickenham to scoop us up and drive us home. Not knowing what to say but just wanting to be there. What was next? How were they going to get rid of it? Because they could treat it, it was so small, I was being told. I kept repeating that the next step was a liver MRI. No one understood what the liver had to do with the eye. I didn’t understand what the liver had to do with the eye. Bloody hell I didn’t even know you could get eye cancer up until two weeks previously. Even my nursing friends kept saying “liver?  Whats that got to do with anything? And liver cancer can be treated Ruth, granted it’s not the best cancer to get, maybe bowel would have been better, but it can be treated.” Not this type. Treated for a time yes. But just a time.

I told only a handful of people at this stage. I needed everything on lock down as it was imperative my children didn’t find out. Not yet.  My middle child was about to go on a school trip to France  and I needed her to go off and enjoy herself. I didn’t want her to get even a sniff that something was amiss.  My eldest was away on her first year at uni. I didn’t want to worry her. I wanted her to be carefree and have fun. Not be worrying about her mum. The youngest would be the only one at home, I would need to think carefully about what I would tell her.

I felt my head was about to explode. I needed to do so much reading and finding out and reaching out to eye cancer groups and question everything but I was in a fog. My friends asked what they could do for me and this is where I started asking for obscure things. I was panicking and thinking there was something I didn’t know about. A cure I hadn’t heard of. I called a friend and told her I had a 50-50 chance. That wasn’t good enough, I needed her to find me better odds! I mean talk about pressure. I look back and think the poor thing, was she crapping herself thinking how she was going tto call me and say “Ruth 50-50 is the best we’ve got.”  I told someone else to find survivors that were old. That had lived to 100. She scrabbled around and within hours a full list had come through of people who had had choroidal melanomas.  She hadn’t read to the end, where it said that each and everyone had since passed away. I sent her a brief text “they’re all dead!”

That’s when my humour came back. And I needed it as I was about to have my first liver MRI scan.

 

The Plan

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“O.K. it’s very small, that’s a good sign.” It was 8mms round by 1.2mms deep. Tiny. About the size of the end of a pencil. Put the end of a pencil up to your eye and it suddenly looks quite big. But this was a small tumour I was reassured. The difference between it just being an excitable freckle and a melanoma were a combination of a few things. It had orange pigment, this was a bad sign. It leaked fluid which was detaching my retina, hence the flickering and by now spinning lights in my eye.  And it was growing. Luckily for me they knew this as I had photos taken previously on the back of my eye due to the Retinitis Pigmentosa in the family. It was also raised and not flat, another bad sign. I was told that as it was so small, some consultants wouldn’t treat it just yet but would wait and see. Wait and see?!  Wait and see what? How quickly it can grow and spread? Thankfully this consultant was on the same wave length as me. Burn the bugger!

She told me I was quite young to get eye cancer. She asked how old my children were. I didn’t want to think of them now. My three beautiful girls. My youngest was nine and wanted to discuss best pizza toppings (roast chicken), favourite ice-cream flavours (it’s a toss-up between vanilla, mint choc-chip and Oreo), and whether or not Harry Potter can still speak parcel tongue after killing Voldemort (the jury’s still out on that one). I just managed to tell her my youngest was nine. I was trying desperately to put them out of my mind.

I went and sat back at her desk with my husband. We were stunned into silence. I had no practical questions I could ask her because all I wanted to ask was whether I would live. How many people with a small tumour go on to develop metastatic disease? I was too scared  to even ask that as I didn’t want the wrong answer. So the plan was that I was to come into hospital the following week for plaque radiotherapy. This is where they sew a disc to your eye to deliver radioactivity to the tumour. The disc would be attached for a number of days depending on the size of the tumour and the strength needed. Luckily she wasn’t explaining the operation in full as eye surgery sounds disgusting and even worse when it is on your own eye. It actually took me about two months to fully read about what had been done to my eye. For all those that are squeamish turn away now. They cut the muscle, so they can move your eye and get to the back of it and then they sew the radioactive metal disc to the eyeball, so that it is covering the tumour. This metal disc is the size of a two pence piece. Mine stayed in place for just over three days.

Luckily at this point my husband had a pen and paper on him as the list of what to do seemed endless and I wasn’t taking anything in. I was told that I would meet up with my eye cancer specialist on a regular basis, in fact I was told every six months. Why? surely when the tumour has been burnt I’m done? Wrong. There is a risk it will return and certain side effects I would learn about about further down the road. I also needed to have an oncologist.  This was because there was a 50% risk this was metastasize in my liver, I needed someone to keep an eye on this and organise liver scans. This would also be every six months.  I would be having a full body CT to see if it has already spread and lung x-rays and a full blood count. I was given numerous forms and numbers to call to make various appointments. The first port of call was to go down the road to the London Eye Clinic and get photos done of my eye.

This was too much information in such a short space of time when I felt like my brain was no longer working. I needed the world to take a pause. But it didn’t and I could feel the soft vibrations of my phone in my bag as we stood up to walk out of her office. I needed to call my family but desperately wanted to put it off. Those phone calls were the worst I’ve ever had to make. In one call I was shattering their hopes that this was all just a false alarm.

Diagnosis day

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As I was approaching my appointment with the eye cancer doctor I was starting to border on mild hysteria. I think the lack of food (I dropped a dress size. Every cloud and all that) and lack of sleep made me swing between floods of tears and absolute laughing hysterics over things that were funny, but perhaps not that funny. One of the things I remember laughing at, for at least ten minutes while my kids looked on was a film I was watching with them.  We all started laughing together, then they were laughing at me laughing so much, then they just stared at me a little concerned, thinking perhaps I’d lost the plot and maybe they should call an ambulance.  The film was 50 first dates and the scene, if you google it, is Ula taking a beating. I just watched it again now. And yes I laughed, it is funny, but 10 minutes? The kids were starting to suspect that something strange was going on.

I had now told a very close friend what was going on but in a very nonchalant way. If I showed no concern, she would have no concern and I could feel this was just a silly mishap. I made plans to meet for coffee dates and a BBQ at the weekend. All of which were about to be cancelled.

Monday morning arrived. The kids were dropped at school. I don’t know  who by. I could have done it but I have no memory of that whole morning. My memory starts in the consultants’ office. I felt sick. She was asking questions, I  was running through the story to date. I was hoping for reassurance that it was rare, very unlikely to be anything etc. but none came. A quick eye test was done. Bad left eye was slightly weaker than the right. This can be normal. She asked my eye colour, paler eyes are more at risk. Stupid green eyes I thought, but at least not the more risky blue. I was then told I would have drops put in both eyes which dilate the pupils. The drops sting. Dilated pupils mean you can’t read anything. Books, texts, numbers on the phone. I have had this done at least seven times now to date and I still turn up with a book to read! All prepared? Yep, I have my keys, phone, purse and a useless book.

Anyway I had to sit outside with my husband for fifteen minutes waiting for my pupils to dilate. This is where I was really starting to feel scared. I was apologising to my husband for the worry I had caused him and everyone else. He had taken the morning off work and I was feeling bad. This was just stupid. There was nothing wrong with me but I had scared everyone with my panicking. I had caused a scene for no reason. My family and friends were waiting to hear the all clear.  They told me numerous times to call them as soon as I came out. They wanted to know what time I was going in and trying to work out when I would be out. I had caused all this worry. I just wanted to go home.

She called me in and sat me at the contraption where you rest your chin  and forehead against the plastic rest. She started with my good eye. It probably took forty seconds. Then she moved onto my left eye. My heart was racing and my hands were sweaty as I prayed for her to tell me nothing was there. She told me to look in different directions and suddenly there was a pause. I stayed looking in that direction as she was counting. Measuring. She had seen something and I knew it. I tried desperately not to cry as perhaps she wouldn’t see through the tears. I needed to take a deep breath as I think I must have been holding it. She moved away and asked me to sit on the chair on the back wall. There was a small ultrasound machine. She told me that if I closed my eye she would put jelly on it and could look at my eye on the screen. Before she started she said, “Ruth, I have seen something in your eye. It was right that you were referred to me. You have a melanoma.” She had said what I had been scared of hearing for the last two weeks. It was out there. Cold and real. This wasn’t going away.

You know when little children try not to cry? They have little downturned wobbly lips. I had that.  I look back and think I must have looked so stupid. A forty-year old woman with a wobbly lip! But I bet she’s seen all sorts in her cancer office. I was trying to hold it together and ask something, but I didn’t know what to ask  and was scared to move my mouth in case I started blubbering like Muriel in Muriel’s wedding (google it). My husband broke the silence, asking for clarification, what did she mean?  Your wife has cancer he was told. The jelly went on, the measuring continued as she told me very matter of factly what would happen next.

 

Panic and Anxiety

~ justaneye73 ~ 2 Comments

I couldn’t really skip to diagnosis day without giving a huge shout out to panic and anxiety. They kindly kept me company for the two weeks leading to diagnosis  and now  check in with how I’m doing on a regular basis.

I can imagine we have all  had the cancer scare. A dodgy smear, a lump, an itchy mole, usually alleviated quite quickly by a GP or perhaps a further test. It usually stops there. But we all know the worry, just that in itself creates. I was with a friend recently who was telling me of a recent cancer scare she had had. She told me how frightened she felt. It ended with her saying “and thankfully everything was o.k. Phew!” There was a very slight uncomfortable pause before we swiftly moved on to other matters. I know in that pause she felt bad. She’s an intelligent woman who was probably kicking herself under the table. But the pause on my part wasn’t due to thinking she was insensitive, I was pleased for her. I was just  briefly thinking how I envied her.. how I wish I had had that Phew! moment.

Panic and anxiety are not emotions I was familiar with until this episode. I have been lucky enough to never having experienced a panic attack or feel the type of anxiety that is present every second of every day, trying to stop you breath. I was about to experience possibly the most difficult period of my life. I was amazed at the way my emotions engulfed my physical well-being. Surely my emotions could just stay put in my head? But no, they took over my body. My heart rate would start racing for no apparent reason. My hands were sweaty, and that awful feeling of just slowly descending into a force that compresses your chest so that you can’t quite take a full gulp of air. Your lungs no longer have the capacity to be full. I had a knot of tension ever-present in the pit of my stomach, it made me feel restless. It stopped me  doing things that would normally occupy my mind. It stopped me from doing things I enjoyed. It allowed me no respite. I couldn’t read. I couldn’t watch the telly, I couldn’t be with friends and enjoy a conversation and I couldn’t sleep. I was exhausted. I would go to bed and just lie there. I would eventually drift off, maybe just part midnight to wake again two hours later. The loneliest time is in the middle of the night with your fears when everyone else around you sleeps. I would watch the clock and then maybe drift off about an hour before my alarm was due to wake me. I was tired but I couldn’t sleep. I craved cups of tea and comfort.

At this time the only two people who knew the fear I was living in were my husband and one of my sisters. My husband was at work while my sister tried to encourage me out. I didn’t mind just being with her and not speaking. We would wonder around , or go for a coffee while I silently wiped the tears away. I couldn’t plan meal times or function normally at all. She took me food shopping. I didn’t know what to put in the basket, she helpfully popped things in that didn’t take much thought. We went to pay. I was at a self-service till when I could feel that I was  going to start crying and not be able to stop. I wanted to leave the food. I was trying to take deep breaths but the tears started to fall. We went outside. Standing on Richmond high street I just cried. I needed to get home. My sister walked me to the car and before she said goodbye she said.”Ruth, I have a good feeling about this. Trust me. You’ll be fine.”

Me coping with the anxiety by walking up huge hills.

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Sorry this blog is a bit doom and gloom. It was a pretty bad time. Humour back soon.

Ruth xxx