Month: June 2016

A Bit off colour

~ justaneye73 ~ 1 Comment

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Feeling a little deflated and orange as I write this. I had a fluorescein angiography today, where they inject a dye into your vein so that they can see the blood supply in your eye. The dye gives you a ‘celebrity tan,’ I was told, which could of course be any colour from and old leather bag to a sickly jaundice. Your urine also turns yellow. Not just a normal yellow colour but fluorescent yellow. In fact if I put it in a straw I could happily wave it around a dance floor and it would glow in the dark and fit right in with the kids day glow sticks. I might give it to them as a cheap version of a glowing necklace later and see if they notice? “Don’t be alarmed.” I was told. There is also some adrenaline at hand as  1 in 1000 will have an anaphylactic shock and need adrenaline. Bloody hell, can I just go home now?

If my blood supply was good and sight loss was due to the fluid, than Avastin injections could prevent further deterioration of my sight. Unfortunately my sight loss is due to ischaemia rather than fluid so Avastin injections won’t work. Obviously the plus side is I don’t have to go through having injections into my eye and making the repetitive monthly journey to get them. The down side is that there is nothing that can be done to restore the sight or prevent further deterioration. This is all said by the consultant  with good humour and smiles so that you think it’s the best news you’ve heard all week, but my mind was ticking away as I was grinning like a nodding dog. I have realised quite quickly that any questions need to be asked there and then, as once you walk out of that office you need to wait for your next appointment and it’s incredibly annoying if you want further clarification. So I asked the questions that were on my mind and the responses were that it was ischaemia, which is death of the blood supply to a patch, mine was confirmed at between 12 and 1 o’clock. It was quite early to get it. It usually appears from 3 years. Just because it is early it doesn’t mean that it will progress faster, but it will progress. I’m looking at about another 2 years of sight in that eye. Pile of sh*t hey?!

As I wrote that last sentence I laughed as I remembered a member on my eye cancer group who had had an eye removed due to a large tumour. He had been given a choice as to whether to treat the tumour or go straight for removal. His response was “well if you had a bag of sh*t you wouldn’t chuck the sh*t and keep the bag would you?” Fair point well made young man.

So as I have also come to expect, she would like to see me again in a month. This is where I silently scream. I spoke to my husband on the train on the way home as I had gone to this appointment on my own. He said he felt sad for me. I feel a little sad too. It will pass, in a day or two I will think how silly to feel down about it as it really doesn’t matter, but over the past year I have learned that it is important to acknowledge these feelings. It doesn’t take me long to bounce back. I have a very important 70th party to attend this weekend so with the prospect of seeing lovely family and having lots of glasses of champagne I can’t stay glum for long. Anyway in my opinion two eyes are totally overrated. It’s all about mono vision now don’t you know?!

Woohoo! You’re up to date.

~ justaneye73 ~ 2 Comments

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About three weeks before my April eye and liver appointment I started to lose my sight. Even though I had been told this was going to happen it still shook me. It was a big reminder that things are still happening in my eye. The radiotherapy still has an effect on me a year down the line. I hadn’t escaped unscathed. The battle wounds remain.

I had been sitting with my husband and children, we had had dinner and were just sitting and talking and probably laughing at each other, when I felt that things were  slightly fuzzy. When I closed my bad eye, everything came back into sharp focus. When I closed my good eye, things were quite blurry. “You’re tired.” I was told by family desperate to offer reassurances that this wasn’t due to the cancer. It wasn’t going to come into our evening and remind everyone on the fragility of life, not now. We were having fun. I agreed it was probably tiredness. I knew it wasn’t. In the morning I realised I could no longer read with that eye. Later that evening I spotted a spider on the wall. When I closed my good eye the spider disappeared, like a magic trick. I kept opening and closing my eye so that I could figure out where my sight was at. Large print I could read, such as a number plate, normal size print I couldn’t. I have a ‘blind’ spot between 12 and 1 o’ clock. Although it’s more of a distorted smudge spot than a complete blind spot. So if I was looking at you, your right eye and forehead would be mushed into a bit of a psychedelic swirl just with less colour. Although this is only from my bad eye. My good eye is very good. So all in all I think my sight is still better than my husbands. I measure how good or bad my sight is on him as I think he has pretty bad eye sight so while I’m still ahead, I’m happy.

We walked up some big hills that weekend so that I could feel some physical pain. Burning thighs are a great way of taking away any mental anguish going on. I felt sad about my eye but happy to be alive. It’s a strange emotion as you want to grieve for the loss of sight but you feel ungrateful if you do.  I would of course rather have no sight or no eye and still be living but I needed a moment to just acknowledge that I felt sad. Sad that this whole episode had happened. But reaching the top of some Surrey hills, gasping for breath and rubbing my thighs I was obviously very happy and grateful to be alive.

My eye appointment showed significant sight loss. It was described as ‘candy floss’ in  my eye. There may be something that can be done to help restore the sight, or at least prevent it worsening. Avastin injections. These are also used in age related macular degeneration, they stop the increase of abnormal blood vessels. The injection is actually into the eyeball, which sounds absolutely disgusting and would be needed every 4 weeks. I need to have an angiography first to determine what the blood flow is like in my eye and if all is well I will receive injections into my eyeball. Hurrah!

The tumour remained the same size. I hope one day to report that the stubborn f**ker has shrivelled up and left the party as I’m getting bored with writing that it remains the same. Overtime I keep reading from other eye cancer patients that someone has had plaque and their tumour has shrunk, I question why mine hasn’t? I keep trying to reassure myself that this is not a bad sign but at times I don’t know whether I am reassuring or just fooling myself.

The liver MRI was awful. This time I did actually squeeze my emergency button and ask to come out. I needed to breath. This was my first year scan. I was in the danger zone and was panicking. The wait for results was horrendous. My husband joined me for a walk in Bushy park. I cried. He tried not to. I told him I was scared. How would all the logistics of family life work without me? I was trying to work out how my middle daughter would get to drama in Hammersmith on a Saturday?  I was thinking he would never put the heating on or cozy lamps on. The house would be cold and uninviting. In my head I was thinking the list would be endless of things for him to do if I wasn’t  there. He was telling me how he was trying desperately not to think these things through but when he goes cycling the thoughts just fly into his head. However hard you try to block them and think of the present moment, they are too powerful. I crossly told him that if he once told the kids to put an extra jumper on whilst turning the heating down I’d never forgive him. Warmth, light and cozy sofa throws are what is needed at all times. I remember lying in the bath and flying out of it like that crazy woman in ‘Fatal Attraction’ as I felt I couldn’t breath and was drowning. The anxiety was overwhelming. One day I was on my own and I couldn’t call anyone. You can’t, however much anyone tells you its O.K. to call, you just can’t. How could I call my husband at work when he was probably about to go into a meeting  and tell him that I’m scared? That I don’t want to die, I don’t want to leave them all. So my cry for help went to my eye cancer group friends. “‘I’m scared and I don’t think I can cope.” The response was incredible. I can’t do them justice in anything I say here. They are truly amazing. Through this horrible experience I have observed a real kindness, which is humbling. So a little shout out to the OM warriors, you know who you all are. Thank you. I hope to return the favour some day.

Thankfully my scan was clear. My game of russian roulette was over for six months. I wondered if it would ever get any easier. But for now its onwards and upwards. You are now all up to date with my story. Tomorrow I’m off to the eye clinic to see if I can have these horrible injections. Fingers crossed. I’ll keep you posted.

Telling the kids

~ justaneye73 ~ Leave a comment

In October I had my second MRI scan. Bizarrely it wasn’t as awful as the first time. I’m not sure if it’s  because I had worked myself up into a bit of a frenzy, that it didn’t seem quite so hideous. So to those about to experience a first MRI, after reading ‘my first MRI’ post you might be slightly apprehensive, but will come out saying “that wasn’t that bad!” So I think I have actually done a bit of public service. No need to thank me, you’re welcome.

I  requested Magic 80’s hour this time round and when Wilson Phillips ‘Hold on’ came on I was a happy woman. This caused a stream of conversation after about what is your favourite bit in Bridesmaids. The radiographers’ was the wedding dress scene, but mine has to be the plane scene, “I had a dream we were in a plane crash. You were in it.” Surreal conversations had when you are waiting to find out if the cancer has spread. So waiting for results  comes next and then thankfully I received an ‘all clear.’ Another excuse for bubbles and celebrations. I was aware that the fear wasn’t as bad this time around, as I was expecting an all clear, due to only being  six months post diagnosis. With two years and ten months swimming around my head as the average time it takes to get to the liver, I had sort of worked out that the danger zone is from one year to four. My liver mets guy said he had heard from my eye oncologist about the fluid. This worried me as I wondered why she would call him and inform him unless this had alarm bells ringing for them both. I think those alarm bells will now remain ringing, but I hope time will prove them wrong.

My eye check up in December was unremarkable. My stubborn tumour still hadn’t decreased in size but remained looking dormant. I informed my eye doctor that my next check up for the liver was in April and if all was well maybe I could go onto six monthly checks and have everything done in one day? Sounds a reasonable request. She eventually agreed that she would leave me for four months until April, but I was now never going onto six monthly checks. I would always  be seen four-monthly. What?! and Why? But actually did I want to know that answer? No. A little bit like the biopsy, I don’t want to know. She informed me it was due to my age, yes, likely story. My age hasn’t changed since I had been seeing her, I haven’t suddenly got younger, but I wasn’t going to argue the toss, I didn’t want to know the answer anyway. Christmas was around the corner, I was escaping from all hospital check ups for a full four months, I was content with that.

This was when we decided to tell the children. With things seeming more calm I felt I could do it without crying. Actually that’s all a big lie, I remained a coward. It was my eldest daughter that came to me and said ,”mum, you need to tell T.” My youngest had gone into her elder sisters bedroom when she was home from uni for the weekend and said “I think mum has cancer.” My bright little observant button had watched us over the previous months, had been watching the tears, the hugs, the cards received from friends that had been put away so they couldn’t read the heartfelt messages, the flowers arriving, the neighbours knocking on the door asking how I am and had realized what was going on. She had kept it to herself because I was too selfish to talk to her about it. I had been thinking about myself and my emotions and hadn’t put her first. That is my biggest regret in all of this. I should have told her sooner. Even when she would hug me at night and cry and tell me she didn’t want me to die, I’m ashamed to say I would laugh it off and tell her not to be silly. I just had a naughty freckle. I couldn’t bare to see her in pain but I didn’t realise I was causing her more pain by keeping it from her. Thank goodness for her older sister, other wise I m not sure how long I would have tried to hide it under the carpet.

Telling the children is obviously hideous. A moment came up in a conversation so I took it and told them. They cried, as expected,  but the biggest shock was for my dizzy middle child. She is called ‘dizzy middle’ for a reason. Her life is one of no concerns and worries. She is the one that struggles most in school,  but she is our sleeping beauty who doesn’t have a worry in the world. She is laid back and always laughing. And this came to rock her world, not in a good way. Maybe also because she was in France while I had been in hospital she couldn’t quite comprehend when this had happened. She needed fast reassurance that my check ups were all O.K and now has swiftly moved on. In fact I think she’s probably forgotten about it. There are rounders games to play and drama auditions to attend, why worry about your mum’s dodgy eye? And she has a point.

 

 

 

Any excuse for bubbles

~ justaneye73 ~ 2 Comments

6a01156f3e50d5970b0168e5db1c2b970cReturning to see my eye consultant, at the end of September, I wasn’t as nervous as usual, but the fear was still there. It never fully goes away. It’s as if my body tries to steel itself for another shock, just in case. But it didn’t need to this time. As I sat in her office I informed my consultant that the flickering had practically all gone. The eye drops went in and after the obligatory ten minute wait for the eye to dilate, she confirmed that no fluid was visible. The ultrasound was then done and a tiny bit of fluid was present but most of it had dispersed. It looked like my tumour was finally dying. Hooray! The size remained the same but I was sort of expecting that now. She told me that I was able to have a two month break before having to return. As she spoke she told me how pleased she was as she had been so worried?! What? Oh my god if she had been worried I must have nearly been at death’s door and I definitely wouldn’t have slept for the month. Although think of the weight I might have lost.  I laughed as I told her I had stopped worrying about it two weeks ago as the flickering had stopped, maybe I should have done her the courtesy of letting her know that. Mind you if she dropped a dress size too she might be secretly pleased.

We left the office feeling slightly overcome with happiness. There were no ifs and buts on that appointment, no uncertainties, the fluid had all but gone, the orange pigment wasn’t present, the tumour hadn’t grown. Today was a good day. For the first time ever after an appointment my husband and myself went for a quick lunch before he went back to the office. He didn’t need to take me home in tears this time. I sat on the train from Waterloo to Hampton sending happy messages to family and friends. I couldn’t wait to pick the kids up from school and chat about normal things without this dark grey cloud always looming in the background.

But as always with cancer there are more appointments on the horizon. My second MRI was due in November but was being moved to October at my request, as it  was my birthday in November  and I didn’t want to either be waiting for results or waiting to have the scan, I wanted it over and done with. The next eye appointment would take me to November/December and then I was hoping I’d move to six monthly check ups. I was getting fed up of this whole thing ruling my life. I felt like we couldn’t make any plans, just in case. And monthly appointments come round far too quickly, especially as I tend to spend the two weeks prior to an appointment apprehensive and scared. You’re looking at just a two-week window of normality. In my head I was calculating that by christmas, with a bit of luck I would finally be on six monthly appointments and everything would be back to normal. I would be able to put everything finally out of my mind.

So while sitting there watching about a million musical.ly and dub smash videos by the kids I popped a bottle of bubbles in the fridge, as why waste an opportunity to celebrate?

Other Support

~ justaneye73 ~ Leave a comment

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A strange thing about being diagnosed with cancer was that I didn’t feel I had it. At times I felt a bit of a fraud. I looked well, I had no hair loss, weight loss or any other classic cancer signs. I just looked like a normal person. But as I did have it, I was open to any help on offer. So soon after diagnosis I went and registered at the Mulberry centre in Isleworth, it’s a cancer support charity for anyone effected by cancer. I didn’t know what support I wanted, I was probably just going through the motions, but I had heard good things so thought I better sign up. I had only been out of hospital for about a week so my sister drove me down. As  we walked in  I noticed it had a lovely warm atmosphere. People are very inviting. I could actually imagine going there to relax. It has a slightly, lovely, meditating garden feel about it, rather than a grotty day centre feel. While there I saw a lady struggle to come in, she looked weak through, I was guessing the brutality of chemo, she had hair loss, was very thin  and I was standing there looking like I had a bit of conjunctivitis. See? A fraud. My cancer wasn’t bad enough to be there. I filled out the forms and left. I told my sister I was never going back. Those people were ill and I wasn’t. I didn’t want to be associated with cancer. Little did I know then that in a couple of months I would be attending the centre weekly.

The other time I felt a bit of a shock at being linked to cancer was before my treatment. Again with my sister we were talking about who I had told, who I still had to tell and who I couldn’t cope with telling, so  was hoping to delegate the task to her.  It’s a bit like organising a wedding,  who to invite, who not to invite, but obviously not as much fun.  My sister said “I haven’t told such and such you have cancer.” It physically stopped me in my tracks. I’ve got cancer?  Cancer? I hadn’t heard the word really since diagnosis and the 24 hours after. Now here it was being bandied about in the middle of a pyjama aisle in Marks and Spencer’s. I had cancer. When people describe being told they have cancer  being like a physical punch, they aren’t wrong, and the blows just keep coming to take the wind out of your sails.

I had mentioned before, that I had received a lot of support from the eye cancer Facebook group, that was set up by Ocumeluk, the eye cancer charity, and they were having a conference in September, just before my next eye appointment. I  had it sitting in my e-mails and I wasn’t sure whether or not to go.  I felt strange being associated with cancer. I didn’t want to be associated with cancer and  I didn’t want to be frightened by ill people and be standing there like a fraud again. But after my last eye scare I needed to arm myself with all the information available to me while I was in a mentally stable place to take it all in. Also I felt I had made a few friends in the group and they had said they were going. So a little bit like a kid in the playground saying “I’ll go if you do” and also because my husband  said he would come to hold my hand, I went.  I was really pleased I did. The ice was broken very quickly when a lovely man bumped into me with a cup of tea, “sorry didn’t see you there. Prosthetic eye.” I was standing there deaf in one ear while he spoke to me with sight only in one eye and I started to laugh. As we spoke I realised I actually couldn’t tell which eye he meant.  I asked him which eye had been replaced as I did many people that day, the prosthetics are amazing. Really incredible. It was the first time I had ever met anyone else with eye cancer and there must have been over 60 of us in the room. Everyone was asking each other about their own stories.  Many people there had liver mets and were doing incredibly well on the immunotherapy’s. There were talks on various treatments, most of which went over my head, including one from my jolly liver mets guy. I was glad to see he was legit and I wasn’t seeing a dodgy quack.

I came away and for the first time I felt there was hope, a lot of it. I felt the same enthusiasm for the immunotherapy that my oncologist had and had tried to tell me about at the beginning of this process, when I had just wanted to punch him. Things are really moving on in the cancer world. A year down the line I don’t feel the same physical blow when people put me and cancer in the same sentence. It has lost its force to take the wind completely from my sails.  I know I still get scared at scan time, who wouldn’t? But there are treatments and plans and people working tirelessly on our behalf to find a cure and prolong our lives.  So cheers to the brainy scientists.Keep up the good work!

Stay Positive! : )

~ justaneye73 ~ Leave a comment

 

When I look back that  was a pretty hard time for me. The kids were still on their summer holidays so I was getting no time to myself to just think. And yes the decorator was still here! I tried desperately hard to concentrate on other stuff. My middle daughter was moving up to secondary school so there was great excitement for her there. Pencil cases and new pens needed getting, a cool new school bag, but my heart wasn’t in any of it. I felt so low for the first time since this had started. I had had my fair share of panic and anxiety but now I just felt flat. I had no enthusiasm for anything. I wanted to walk away from everyone and everything. I remember sitting in my car in traffic near to Hampton court Palace where we live, the kids were nattering away but it just seemed like background noise, as if I was listening through water. At that moment I am ashamed to say I wished I had never had them. They were causing me too much heartache. I loved them with such intensity I couldn’t bare the idea of not being there, and I couldn’t envisage the pain I would put them through if anything happened to me. I started to think if I didn’t have children surely this whole cancer thing would be easier? I had to stop myself just getting out of the car and walking away, away from all of it.

I called my husband, I was crying, he told me how well I was doing. I said through gritted teeth “I am not doing well! I can’t cope with this anymore!” We both look back at that time and are amazed we didn’t see it coming sooner. I was entertaining the kids every day, trying to keep them out of the house while the decorator just generally made a mess. My husband was back at work. And I had this enormous concern that my tumour was active. I didn’t want to go back into hospital, I didn’t want my eye removed but more importantly than that I was terrified that if my tumour hadn’t been eradicated by plaque brachytherapy than it was probably an aggressive bastard that was perhaps on its way to my liver. This was what kept going round and round in my head. I needed to do something, I couldn’t just sit there I needed to put my trainers on and run, but my consultant had told me not to run or do anything strenuous. I was going stir crazy. All the mad cancer thoughts started coming into my head. I wanted a different cancer, a cancer that could be treated. Why did I get lumbered with this crap one? I wanted treatment. Now. I didn’t want to wait for it to return to kill me, give me chemo, drugs anything. The feeling of drowning was immense, I would physically lift my neck to take a full gulp of air as my lungs weren’t full. No one could help me now. The blind panic had set in and I couldn’t listen to anyone or anything.

People try to say all sorts of things to make you feel better. Not usually that helpful,  I actually just prefer it when people make me laugh. A good laugh that makes you cry solves all sorts of ailments.  But it’s usually at times like this that someone turns up with that classic nugget of wisdom. Something they think will solve everything. Something they think you will  never have heard before, but if you have you obviously didn’t listen properly so they better repeat it. They turn to you to you and say, “stay positive!” Aghhh!!! The one thing I have learned to NEVER say to someone with cancer is to ‘stay positive’ I can’t even explain what a complete red rag it is to a bull. A very close friend said I need to tell them that I also have two words of wisdom for them and the first one begins with “F!”

A visit to the GP was finally in order. “Ruth we can prescribe you something.” I didn’t want drugs. I needed the strength within myself to deal with this but my strength stores were running low. She asked me what it was I felt I needed. “I don’t want to feel scared anymore, that’s it. Please just take away the fear.” She listed all the things people try, yoga, running, counselling, mindfulness, cognitive behavioural therapy,  “and if things don’t work, come back. Anyone at the surgery will prescribe you something at  anytime you feel you need it.” So  I had my list to work through, this in itself helped enormously. I had something practical to be getting on with.  I wasn’t just sitting there waiting for the inevitable.

About ten days after my last appointment the flickering stopped. Just stopped. Suddenly.  It seemed like it had just happened overnight. I kept closing my eye and checking. It had definitely gone.   I called my husband in tears. “The flickering has stopped. It’s gone!” this had to mean that the fluid was gone and my tumour was no longer active. I could feel myself start to breathe again. Usually at times like this I then just feel totally exhausted.  All the built up tension I’ve carried around with me starts to seep away and leaves me physically and mentally drained. I know  I still had a few weeks to go, but if the flickering didn’t return perhaps finally the ‘naughty freckle’ was dead!

Tissues at the ready

~ justaneye73 ~ Leave a comment

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Returning from holiday I was anxious to see my eye consultant. I had pretty much convinced myself that my tumour had grown. I was back to being unable to sleep or read, getting snappy with my family. But before I could be seen by my consultant I had a wedding to attend. My oldest friend (not old in age but in years known, just in case you’re reading this xx), was getting married. I was anxiously saying to my husband that I didn’t think I could go. I didn’t want to start crying. This was her day and I didn’t trust myself to keep my emotions in check. We agreed that we would drive so that we could play it by ear. If it became too much we would sneak off without anyone noticing, if I felt O.K. we would pick the car up in the morning. Well everyone who knows me well will know, the car got picked up in the morning!

Her wedding was just what the doctor ordered, being around gorgeous people in love, catching up with people I hadn’t seen for years, drinking far too many bubbles and dancing the night away badly with my gorgeous husband was just perfect. We made our way home, tired and happy and I slept soundly for the first night in weeks.

Monday morning took an age to arrive, when it did the kids were dropped off at school and the repetitive journey, which I was beginning to hate, was made to Waterloo. I felt as anxious going in to this appointment as I had at my very first. I knew something was wrong and I was right to feel anxious. She asked how I was and I explained about the flashing lights and flickering. I had the sight test, no change, still a small discrepancy remained between both eyes. I then had the eye drops put in and waited outside for ten minutes. I was called back in and put my chin on the rest and leaned my forehead up close to the light. She looked for a while and then told me to sit at the back of the room for the ultrasound. This pattern was all becoming routine to me. The ultrasound calculated the measurement of the tumour.No change in size. But it was leaking fluid again. This was one of the bad signs. She took me back to sit at the desk and for the first time since I’ve met her she look concerned. My husband says she has a good poker face, but at this time the mask slipped and she looked a little unsure of what to say. She was trying to word something very diplomatic to me and i could feel the tension build. I didn’t want her to speak but I also wanted to shout “just bloody tell me!”

She was very careful in what she said. The tumour was leaking fluid. This was unusual. This was not expected. This was a sign that perhaps the tumour remained active. She thought the best plan was to wait a month to see what was happening and then make a plan from there. My husband asked her what I also wanted to know “if the fluid is still there in a month what then?” “Lets not discuss that now” was the reply. I knew it was further surgery and highly likely to be eye removal. We walked out of the office. I turned to look at my husband, maybe he had heard something positive in there that I had missed, maybe I was just concentrating on the bad news “Oh Rufus” he said and just put his arms around me. I cried. The whole time since this monstrosity had arrived in my life he had been saying he wasn’t going to allow it to win and suddenly he was standing there looking defeated. I sat on the Jubilee line home from Baker street to Waterloo with big fat tears rolling down my cheek. People were side glancing at me and I didn’t care. This was becoming an all too familiar part of the journey. The apprehension on the way up and the tears on the way back. I cried into his shoulder, “please let me get my youngest through primary school.” “You will” he said “you will.”

O.K. I am stopping there as it is making me cry, but can I just say that that was a year ago and yesterday I celebrated my eldest daughters 21st. We had chocolate cake and champagne. Looking back the story is sad and the dark times were hideous. But life moves on. And I remember saying I just wanted to get my youngest through primary school, but now I say that’s not good enough. I want to get her through secondary school, university, dance badly and cry at all of their weddings and have my grandchildren to stay for weekends. That is what I want and that is bloody well what I am going to get. To all you June birthdays out there, what a wonderful month to be born. Happy birthday! xx

Oh! and just one more thing. I noticed I wrote my name as Rufus. This wasn’t a mistake this is what my family and husband call me. It’s not a lovely pretty feminine name. Or a sweet gentle name. It’s a man’s name or a scruffy dogs name. I had sort of hoped it would die out as I reached adulthood but once my husband cottoned on there was no going back. So every now and then it might pop up on my blog – just don’t you lot start calling me it and we’ll remain friends xx

A child’s view

~ justaneye73 ~ Leave a comment

My youngest daughter came home from school yesterday excitedly telling me about a story she had written. They had to write about something that had meaning for them. She wrote about cancer. She’s ten. My initial thought was “Oh God that’s awful! Why think of cancer?” I felt sad that cancer has touched our family in a way that my children think about it, when in school writing a comprehension.  I felt cross that she hadn’t spoken about her dog, or a memorable holiday, or a cake she had made. Not cross with her, cross with cancer. We spoke about it, the story, what had been written. She was very pleased with it, “it was really good, mum!  It was about a child who had an anonymous call from the ‘C’ word, it told her it was coming to get her. She had felt scared so had put down the phone, only to confront it and call it back. To ask what it meant. It told her it meant it was inside her growing.” As you can imagine I was walking her back to the car thinking f***! F***! While smiling sweetly and saying that sounds a great story! Not! It sounds like you thought about it in great detail and added lots of drama for effect, not sure where she gets it from.

All the time I was thinking I’ve dealt with this all wrong. My children are scared cancer is coming for them. I thought I’d read enough about what to say to children about cancer. To be as honest as possible without scaring them with statistics. And I had spoken openly about it to them. Eventually. It did take me  about six months before I actually told them and I probably  should have told them sooner and I regret leaving it so long. But we are now able to talk about it. We just don’t that much as there are more important and fun things to talk about. They decided they didn’t want to read the blog as they find it upsetting but they  always ask me to tell them the funny bits. My middle daughter roared with laughter at ‘The fault in our stars’ bit. “That’s so funny!”  She was squealing while wiping away laughter tears, ” I got you to watch a cancer film when you had cancer!” Hysterical, obviously!

So I was a little concerned that I had missed something. Perhaps not seen some worries or that she was just unable to express them. I was also a little curious as to what her teacher had said, as I was sure she wouldn’t have just read it without comment. I was right. My daughter was asked why she had chosen that subject?  She had replied with confidence “because my mum had a little bit of eye cancer. She’s better now, she just can’t see that well, but an injection might make it better.”  My cancer story summed up in two sentences. I don’t think I need to continue the blog.

When we got home she wanted to read me the story she was so chuffed with it. It made me realise that I’m not the only family member who deals with the cancer emotions by writing. She does too and it allows us to discuss her fears, something she probably wouldn’t have thought of on her own. Writing things down allows you to reflect on your experiences. Hers at the moment seem to be a worry that she will get cancer. Something we need to speak about and reassure her about a lot over the coming months. The other thing I thought was that we have so many happy memories every day. I laugh a lot with my children, they are all very funny. I know at the moment it is still early days but I hope to get to a stage in the future where when someone asks for a memorable event, cancer won’t be the forefront of everybody’s mind, but instead we will be back on track with stories about the dog or a memorable holiday or a cake we had all made.

A Peaceful Day for a Sail?

~ justaneye73 ~ Leave a comment

So the summer was spent toing and froing from home to the eye specialist. I was told after my initial post op checks I would eventually get to six monthly check ups. This didn’t seem to be happening,. The goal posts kept being moved. There was eventually signs of improvement. It was the orange pigment. It had gone. Nothing else had changed. I was reassured that this was nothing to worry about. As my tumour was small it actually may never shrink. I wanted it to shrink. I wanted the damn thing to disappear. I didn’t want it lying there dormant waiting to wreak its havoc whenever the fancy took it.

My post op in June was satisfactory, I was told I could have a two month break, that was a fantastic relief. It was the longest stretch of not seeing anyone, it was the start of the kids summer holidays so I was hoping I could put it all to the back of my mind and relax. But of course my good friends anxiety and panic wanted to pay a visit. Along with the decorator who I was starting to suspect didn’t have a home to go to. Not having any breathing space from the kids or from the decorator who had taken over my house, telling me to not look so worried all the time, I was slowly going doolali. The summer was hideous.

I’m not sure whether it was wrong or not, but I began reading and googling constantly, I needed  eye cancer stories. It was the only thing that could calm the anxiety. I was trying to find a mirror of my story. Someone with the same size tumour who had never developed metastatic disease. It’s silly really but it was the only thing that would work. I would happily tell my husband about someone with a larger tumour than mine, who needed an eye removed but was 17 years on and healthy. These stories made me feel calm and gave me hope. The danger being of course that I would happen across a mirror story of mine where tragically it had developed into something worse. And of course with odds of 50/50 it was only a matter of time.  Your mind is on high alert for any information. You read between the lines. Who said what and what did they mean? And the horrible information that I didn’t want to read came by accident.

I was reading through posts on one of the closed eye cancer groups. You’re  only allowed in if you’re in the special cancer club. Ocumeluk had told me about them, the fantastic eye cancer charity. The post wasn’t anything that had piqued my interest, but I was reading people’s comments and replies while also thinking about dinner when I saw it, like a flashing beacon with alarm bells. A woman who was well-known on the group, with advanced metastatic disease,  who had a medical background and was the font of all knowledge, replied with “….well I knew my tumour would metastasize as it had orange pigment and fluid…” her tumour was 8 by 2. She was my mirror. I physically heaved in horror. With panic I flew onto the forum asking how she knew?  Where was the research?  Where was her information from? She was off-line.  I think because we are a small group, there aren’t many of us, people sense your panic and step in. I received a reply within seconds from one of the reps who was on-line. “Ruth, mine was bigger, with orange pigment and fluid, I’m 6 years on. No spread.” I think I had been holding my breath. I exhaled.

My husband wanted us to have a nice holiday to ‘take my mind of things.’  Anyone with cancer will know, you can’t take your mind of things. However hard you try. We thought the best plan was a busy holiday, sight-seeing, different locations. Move around and don’t keep still.But I was exhausted. My lack of sleep had caught up with me and I was suddenly sleeping beauty, well less of the beauty and more of a comatosed lump. An all-inclusive was what was called for. The kids could be entertained if needed and I could relax and sleep. That was the plan. What we hadn’t accounted for was my eye playing up. The flickering that I had seen slightly at the beginning of this process, was back. I would lie under my umbrella with a sun hat on looking out to sea at the para-sailers floating by and just notice flickering and flashing. I was restless. I wanted to go home but I needed a break. That’s the other bastard thing about cancer, it dictates if and when it will give you a break, you are not in charge anymore. So we had paid for a wonderful holiday, the kids were happy, my husband had time of work and I was convinced my tumour was growing. There was only one way to cope with this, I was going up in a para-sail.

The unusual thing about this is I am actually terrified of heights. My first and last ever ski holiday I had to be rescued by some sort of mountain rescue as I has taken the wrong lift up and instead of getting off at the top of a green run I was at the top of a black run. My rescuer accused me of being colour blind as well as scared of heights. So my eldest daughter was right to look concerned and try to talk me down. What she didn’t realise was that I wasn’t scared. I had already experienced the worst fear of my life, not the ski experience, although that was pretty bad and actually not the cancer. It’s the fear of not being around to see my daughters grow up. The fear of dying and leaving them without a mother. So what was a stupid old para-sail when I was dealing with all of this. I took my fearless middle daughter with me and we floated up to the clouds. It was incredibly quiet up there and peaceful. For a blissful ten minutes I just marvelled at the beautiful world below me and didn’t think of my eye at all. It was incredible.

I think I might book a skiing holiday next!

Zoo exhibit

~ justaneye73 ~ Leave a comment

The weeks leading up to my post op appointment were a little strange for me. I had the physical discomfort of feeling the sharp dissolvable stitches in my eye, the exhaustion from the whole experience and the sadness and fear that was part of the incredible cancer experience (not!). Writing this post I am glad I am writing it in hindsight, because at the time if I had had to describe my feelings I would have just shouted that everyone is incredibly insensitive and I hate the lot of you!  Unreasonable? Absolutely! People asking how I am? How bloody outrageous!  Wanting to check I’m O.K? Inconsiderate cow! Yes I was entering the angry phase and no one was immune from it. Deep down I knew it was incredibly unreasonable so I started to avoid people. I didn’t want to upset people who only wanted to show they cared, so I hid as otherwise I would have offended everyone. My husband says I have a fiery Irish temper (my family are all Irish) and is pretty used to my outbursts. An old work colleague was used to me writing a scathing e-mail (not to her!) that would sit there for at least an hour, by which time I would return and reword it in a far kinder more diplomatic way. There is something very de-stressing about writing “Bitch! Bitch! Bitch!! Bloody idiot!” and then returning to say “Thank you for your response, very kind of you but unfortunately …..” You should try it. Just don’t accidentally hit send!

At around this  time I happened upon Sheryl Sandburg writing after the first 30 days after the loss of her husband, the end of sheloshim. I wasn’t grieving a death of a loved one but I received so much comfort from her post. Where I would angrily shout “stop asking how I bloody am!” She wrote far more eloquently:

‘Even a simple “How are you?”—almost always asked with the best of intentions—is better replaced with “How are you today?” ….. When I hear “How are you today?” I realize the person knows that the best I can do right now is to get through each day.’

I would never had got it right either before experiencing it first hand. I wouldn’t have understood the fear that creeps into every pore of your body. You can’t until you experience it for yourself. I had some people ignore me, I know they felt uncomfortable, I had people come over and demand to know the symptoms, just so they could confirm to themselves they didn’t have the hideous disease. I had lots of cancer stories. I strangely met two people who had had loved ones with eye cancer. One had survived, one had died which just confirmed the 50/50 statistics.

But with all of this I was starting to feel like a zoo exhibit. The more people wanted to see me to comfort themselves that I was doing well, the more I wanted to hide. I felt anxious because I couldn’t answer their questions. The answers frightened me so discussions would be kept to a minimum. I opened up to three people, my husband, my sister and a close friend. I didn’t want to talk about it all the time. I learnt quickly to smile and avoid. I became an expert at spotting people and putting my phone  to my ear. I’d pray it didn’t ring as I was pretending to speak. I’d hide in my car, I missed hockey matches, social gatherings, assemblies because my confidence had hit rock bottom. I apologise to all the people I avoided. You did nothing wrong. I wasn’t coping and it has taking me almost a year to realise that. My husband realised how hard I was finding it after I had told him that a decorator we had in, who kept getting colours wrong, thought I was concerned about what was being slapped on the walls. I obviously didn’t care if he had painted it bright orange with polka dots, I had more pressing concerns. He made the mistake of telling me to not look so worried all the time! “Come on love, smile!” I exhaled as I slowly walked out of the room. I wanted to pick up a hammer and batter him.

I was soon making the familiar journey from Hampton to Waterloo. To find out that my tumour had been burnt to smithereens I hoped. I obviously hadn’t read that far into what to expect as it can actually take six months to show signs of  improvement. So I was a little disappointed with a  “no change,”  but did what any normal person would do in similar situations. I raced onto my eye cancer group to check with them that my surgeon was telling the truth and not just fobbing me off. They all confirmed it to be true, and actually a quick shrinkage can be a bad sign as it can show an active tumour. If it can shrink  quickly, it can also grow quickly. So slow improvements are best, no change next on the wish list, with fast shrinkage or growing not wanted. I was to go back again in another two weeks to see which path my tumour would take.