trauma of cancer

Memories

~ justaneye73 ~ Leave a comment

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Today I had a Facebook notification informing me that I had ‘memories to look back on.’ When it pops up I now always feel a little apprehensive about what it’s going to contain. I never used to, I used to look forward to the meander down memory lane  looking at how small the kids were, remembering days out with friends, or boozy nights with even better friends. But now  as I have passed my first year cancer diagnosis anniversary, at times my memories are cancer related. This is what makes me a little apprehensive. If I remind myself how bad I felt, will those feelings sneak back?  If someone said to me “you were really scared of dying” would I start to feel anxious again as I revisit the dark times?

I was with a good friend recently who has also been going through sh*t times. She said “I hate those bloody memories as it reminds me how good we had it.” But todays memory didn’t make me think that, it made me think how far I’ve come. I scanned and read my post, what I’d written a year ago and felt a slight warmth that that isn’t me now. It was like reading a strangers post. I wanted to respond ‘oh you poor thing’ as it felt alien to me. And that was a good feeling. My friend isn’t there yet, who knows whether she will ever get there, I didn’t know a year ago or even six months ago that I would be here and I am fully aware that at my next scan things could change dramatically, but for today I’m pleased. I’m pleased my post reminding me of my fear didn’t make me feel bad. I desperately want my friend to get here too so we can again look back on memories not with loss and sadness but with the knowledge and battle scars of what we have survived.

This is my post written 22/07/2015

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I’m obviously pleased to see my reference to bubbles, even after everything I had been through. Which reminds me, it’s Friday, the summer holidays and the sun is shining so I’m off to pop a bottle in the fridge. Have a wonderful weekend all. xx

 

Life just gets in the way

~ justaneye73 ~ 2 Comments

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I’m conscious of the fact I haven’t completed my blog for a while.There is no reason other than life. Life has got in the way of me thinking about cancer, which is a great place to be. I realised this had happened when I was having a moan about the results of the EU referendum and the England football team and thought Wow! Isn’t that wonderful to care?  After diagnosis and during treatment nothing could rouse me from my fearful state. Really, you could have said this whole life thing is just one big conspiracy theory and we are actually all aliens and I would have barely registered your mouth moving. But now here I am caring again.

The only recent event that happened that did make me pause, was the death of the great comedian, writer Caroline Aherne. She has joined a list of genius people that have passed away this year including Alan Rickman and David Bowie. Before my cancer diagnosis I would have been with everyone else thinking how tragic and sad, but having cancer as well adds another dimension to those feelings and that reaction was what made me blog today. Well that and being bullied by various people on why I haven’t been writing. Don’t worry you shall remain anonymous. I’m sure I’m not alone in my feelings and reactions, I would imagine other people with cancer feel the same. Now when I hear someone has tragically died, I’m shocked and sad like everyone else but I want to know immediately what they have died from and in the back of my mind I’m thinking ‘please don’t let it be cancer.’ Why? Because that confirms to me that people die from it. I’m not stupid and I know off course people die from cancer but hearing of a death makes it so real. When I am living in hope that all the advances are curing people I look at the celebrities who could perhaps afford to pay for the best care, and if they can’t survive it what hope is there for us mere mortals? After confirmation that all of the above passed away from cancer my next reaction is ‘of what? cancer of what?’ Please don’t let it be eye. My odds on it not being eye are luckily quite high, but only due to the rarity of the cancer and not the high survival rate. Caroline Aherne did have a form of childhood eye cancer. It’s different to mine, but hearing it stops you in your tracks. For a moment again the world stops spinning on its axis. I then feel very lucky. Lucky that I am still here caring about this thing called life. Caroline Aherne said that her mother told her only special people get cancer, so as she had eye, bladder and lung she must be really special and of course we know she was. An utter comic genius.  But I would like to stay not very special at all please, so that I can continue to moan about things that make me cross, phone radio stations (?!) as I did yesterday calling James O’Brien and forget to blog because, well because life has got in the way.

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.

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!

A child’s view

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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.

Zoo exhibit

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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.

 

 

Gory eye

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My eye a few days post op. It was worse for everyone else. I didn’t have to look at it unless I looked in a mirror. So I didn’t

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Hilariously I’m a nurse and my husband is the most squeamish man you could meet, but with me being unable to look and just wanting to cry he took over drops duty. He took over the running of the house, the school runs, the homework, dinner. Phoning and making my cardiologist appointment, arranging my full body CT and my post surgical follow-up. Plus keeping his job going and the money coming in to pay the bills. He has no medical training at all but learnt very quickly how to counteract any concerns and worries I fired at him constantly.  We survived by being practical. And by not spending a single moment alone together. We couldn’t give each other any space for our fears to come tumbling out. We needed to fill the day with the ‘normal’ stuff. And the kids kept things normal as only children can. They didn’t know what emotional turmoil I was in so had no sympathy for me being tired or needing time out. They bullied me into a normal existence and that was how we survived. I remember someone saying that my husband and I should go out for a meal together. Just the two of us so we could talk. They didn’t understand that this is what we didn’t want to do. Talk. It was too painful. I couldn’t sit opposite him in a restaurant and look at the fear in his face and think about what I could potentially lose. So we didn’t.

Cardiology was next on our list of practical jobs to do. The cardiologist was a wonderful man who alleviated my fears straight away. He listened to my marathon feat and gave it the huge significance it deserved. He even asked my time! Four and a half hours if you’re interested. Very difficult to do with a heart condition,  I would have experienced symptoms, palpitations that lasted a few minutes. Yes I have an abnormal heart beat and yes everyone that listens to my heart over the years always asks if I have a murmur, but it’s just me. A little anomaly that about 1:400 have and as long as there are no symptoms it is of no concern. Hurrah! First bit of good news in a long while. “Plus” he said, “you have bigger fish to fry.” Yes let’s not forget the cancer. I was to have an ECHO (ultrasound of the heart) and was taped up to a 24 hour ECG. If the results were all normal I wouldn’t have to see him again. And I’m pleased to say I never have.

Then came the full body CT. I would quite happily trade  my MRI’s that I must have every six months for the CT. It is a calm and serene experience. There is no noisy banging going on. I actually could have fallen asleep if my stupid brain wasn’t in overdrive worrying about what it could see. My thigh had been aching for about ten days. These was bone mets I had convinced myself. Welcome to the world of life post diagnosis, where every headache is a brain tumour, every cough is lung cancer, every sore throat is…you get the picture. However reasonable you try to be it slowly creeps into your subconscious. Just lurking there. Waiting for you to close your eyes and drift off into a peaceful slumber so that the fear and shock is worse when it grabs you and shakes you awake at night. There is no one else awake at night so you can’t whisper “I think it’s spread, I think I’m dying” And would you want to say that to your loved one anyway? As he is also thinking “I’m scared it’s spread. I’m scared you’re dying.” So you lie awake, frightened, waiting for morning to come and relieve you with slightly more reasonable thoughts.

I was waiting for my CT results. I had a few more days to go. The days are endless when you are waiting. I wanted to fast forward time but would then start to think if I don’t have much time I want it to travel at the pace of a snail. An e-mail arrived from my jolly oncologist, the liver mets guy, ‘just to inform you the pet scan results are normal. see you in six months.’ I stood in my kitchen and cried. Suddenly these little bits of good news seemed to be coming my way. Luck appeared to be on my side. Maybe through all of this I would be O.K. It was these little bits of hope that slowly repaired the damage and trauma I had been through. I just needed them to keep coming.