The final countdown…..

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Two family members taking the easy option on a bike!

Sorry this is a long one!

Harley street check up with my eye oncologist on Monday was boringly normal! Hurrah! Tumour same size, what’s new? But dead as a dodo at present. I always worry slightly though, can they come back from the dead? Do they become active again? Anyway mine isn’t which is great.

Took me a while to write this as I had a million thoughts whizzing through my brain. The main one is too many friends are succumbing to this disease. When I started on this horrid path,  being told that 50% go onto stage 4,  I felt scared, for myself. I still am. But now also for my friends. Friends I have made along the way, How were we naive enough to not realise if it didn’t happen to me, it would happen to you? How did we not think as we shared are fears, that perhaps one of us would not be here to listen anymore?  Who can we text at night to whisper “I’m scared, are you?”  when one of us is no longer there?

So results day for so many lovely people wasn’t bringing the joyous news they deserve, hence my slow reaction in shouting “hooray I had a great hospital visit.” Instead I went for a run, a long fast one. I cried. Luckily the rain hitting my face disguised the tears. I felt angry. Why do we have to wait and see? Wait and see whether you’re in the A team or the B team. Do you win or lose? It’s not good enough. More money is needed for cancer research and cures are wanted, fast. People shouldn’t have to pay for the only treatment that could prolong their life because it is still only in the research stage. People shouldn’t have to rely on trials where they may be the one getting the placebo. It’s not fair I wanted to scream from my aching lungs as I heaved myself up Kingston hill.

I made a decision as I ran, that the marathon is the end for me. I’m stopping my blog and leaving the eye cancer group. I’m sorry if it appears weak and unsupportive. I have made wonderful friends and they will remain friends, but I don’t want to make anymore. I want to protect them and me. One of us is going to lose this battle and I can’t face anymore of it.

As my thought process moved on I thought of the good that has come of my cancer diagnosis and there is some.  It dawned on me how far we have come as a family.  It’s taken me a while to realise this, but my children are the lucky ones. At the start I had all sorts of awful thoughts, one of which was that I desperately wished I had never had children. I couldn’t bare to see them hurt or in pain through what I was experiencing.  I felt sorry for them, guilty for what I had put them through, angry that it was now part of their lives too. I was hurt and saddened to see worry etched across their faces. I was scared and so were they.

But they have experienced it and they are no longer scared. The ‘big C’ is no more. Now they hear the word cancer and they don’t equate it with death. As a family we are very lucky as we have a few cancer survivors. No one in our family has died of cancer and I don’t plan on being the first. So my kids now think of it a bit like running a marathon. It’s a pain, you have to go through all the treatment, it’s a bit of a long haul,  but they believe you will come through the other side. And that’s a good place to be, living with hope and belief and being without fear. They are the lucky ones.

Many adults have a fear of cancer.  But some peoples’ alarm always seemed a little irrational or weak to me. I think that was due to my nursing experience. I have been with people who have lost loved ones, seen children cry as parents were ripped suddenly and tragically from their lives. Through this I never became desensitised, but you do end up being a little matter of fact about it and not scared. It’s life. You hope it won’t happen to you, feel desperately sorry for the people it happened to, finish your shift and go home to have dinner with the family. You move on. You don’t forget them but you have to be able to compartmentalise your life otherwise you would never do the job. I learnt very early on that you can’t share with friends and loved ones  what you have experienced, as people are horrified and frightened. So you may just say “a young mum died today.” Rather than “a young mother with four small children has been dying on my ward for the past month. She has had surgery but it was unsuccessful. She is in excruciating pain but tries to hold it together when her children visit. She cries like a wounded animal at night as we desperately page the pain team so we can get it under control. We are trying to get her into a hospice to die so that she doesn’t have to die behind a curtain on this four bedded ward. We are waiting for a bed for her. Which means we are willing someone else to hurry up and die in the hospice so that she can have their bed. We are being offered counselling from the hospital as it is so distressing caring for her and we are rotating shifts so that no one is with her all of the time. Her husband is about 6ft 5 and looks like a tiny child.”  I remember this woman with absolute clarity and her four children. She never made it to the hospice. I was 23 years old trying to make sense of it all.

Why am I sharing this story? Because it is these things that shape us into who we are today. I look back and wonder if I helped her? Was I a good nurse? Did I care enough? I know I would be so much better now. It’s when you compare your younger self with the person you are today, the hurt and life experiences we have had over the years, that have shaped us into caring and sensitive people, who can show understanding and empathy. It  helps us to help others. And due to what my kids have experienced they have some of that, the empathy, the understanding, at their gorgeous tender ages, which will shape them into wonderful people as they travel through life. So they are the lucky ones.

My eldest daughter had a call recently from a friend asking her advise, as someone they knew had been diagnosed with cancer. “What do I say to her?” She pleaded with my daughter as my eldest nonchalantly munched through a bag of crisps wondering what words of wisdom she could  share. I asked her what she had said. She shrugged, “not a lot, cancer doesn’t mean you’re going to die. It’s fine.” I though at the time well a fat lot of help you were! But actually it was the perfect answer, said without drama, said without angst, said with such little fanfare that the ‘big C’ was brought down  to size. It lost its power. It was as if she was describing the weather. Now move on to something more interesting. And it was perfect. When I was first diagnosed with cancer peoples reactions scared and upset me. Seeing the fear in their eyes or them crying made me feel like I was already 12 feet under. If I had had someone like my daughter who had just shrugged and said “whatever” maybe it would have saved me months of anxiety! Now I’m not suggesting that’s the right response when someone close calls to say they have cancer, a shrug and a ‘whatever’ and then moving on to the KFC chicken crisis probably won’t cut it, but you get my drift?

On a final positive note, I was googling fuel to consume for long runs and somewhere in Runners world I found the perfect article!

Boost Cardio

Champagne: Raise a glass to your heart, say Reading University scientists. Their studies found that the polyphenols in bubbly reduce the loss of nitric oxide from the blood, improving circulation. Per week: 3 glasses

Only downsize  is obviously the 3 glasses per week!

Cheers and lots of love until next time.

Ruth xxx

 

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The Sniper

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Well worn muddy trainers!

It’s been over 2 months since my last blog. I hadn’t realise the time slip away. There has been no reason other than I haven’t thought about it. Which equates to I haven’t thought about my cancer, which is a good thing.  I say ‘my’ cancer because I have been thinking about others peoples’ cancer. Other people with eye cancer that we have lost recently to this dreadful disease. Friends who haven’t had good news from scan results and are waiting for what comes next. More treatment hopefully. Treatments that work and can conquer the awful liver mets. Liver mets, the thing that gives us all sleepless nights.

It still shocks me how relentless and cruel cancer is. Getting bad results just before Christmas, or on birthdays or when you have to attend a child’s parents evening never seems right. But of course cancer doesn’t hold your diary and work out the best time to deliver devastating news. Is there ever a best time?  “Oh you’re blowing up balloons for your daughters birthday party? Sorry to disturb you, but you have something suspicious on your liver. Enjoy the cake and we’ll discuss options next week.” Relentless. Cruel. So my thoughts have been with them. Friends who are waiting, hoping for a cure, and slowly as you think of them, the fear creeps in. You can’t help it or stop it. So I keep my head down and keep busy.  Don’t write a blog, don’t draw attention to yourself, cancer may not notice me and move on to someone else.  I think of ocular melanoma as a sniper,  slowly picking us off  with what seems like no rhyme or reason. People with the same size tumours, same treatments,  have very different outcomes. I try and make sense as to why that person has died and I’m still here, but at the moment there is no sense to it. I hope research eventually explains the why and can give us treatments, so my friends don’t have to lose hope. I’m willing on these amazing immunotherapies so that they can come and quash the sniper, before he strikes again.

Now as most of you know, I am running the London marathon in April for Ocumeluk, the fantastic charity that helps us rare, unique eye cancer bunch with everything from practical appointment things to the more heavy emotional stuff. So just a little update on how it’s all going. Very well thank you!!  I’m shocked. My long runs are now 12 miles!! I can’t believe it. And I haven’t suffered a single blister yet. When I first started training I was running just over 3 miles and I just wanted to cross the finish line, but naturally as you run and improve, you start setting yourself little goals. I have two. The first is to beat my last marathon time of 4 hours 36 minutes. Hilariously to do this I thought the easiest way to achieve this would be to tell my husband and kids that I won’t be stopping to ‘chat’ with them when they come and support me. I haven’t broached that with the kids yet as my youngest was asking if she could make a banner and often cycles with me while I run. Could I pretend not to see them or not hear them when they call? Ha Ha! Get them back for calling me deaf and blind! Yes I know I can’t that would be mean,  I won’t have any choice but to stop, damm that just means I am going to have to just train harder!

Anyway, my second  goal is to run Richmond park  in under an hour. Now those that know Richmond park will know it has some ghastly hills. When I first did it in September I crawled up the hills and finished in 1 hour 15 minutes. Chuffed to bits, red in the face, looking like I was having a heart attack, but I did it. Yesterday my time was 1 hour 1 minute and 20 seconds! Woohoo!!

So I’m thrilled with how it’s all going. But just to clarify that I haven’t turned into a boring athlete who checks strava every few minutes like some people (Mr J!!). I’m still not a natural runner. I don’t look forward to my runs, I look forward to the end of my runs when I can eat and drink what I please.  A friend asked me today with all the training I’m now doing have I stopped drinking? What?! Of course not! I have eye cancer. Not insanity!!

So cheers to many more ‘end’ of runs. Fingers crossed for many successful treatments on the horizon for our friends and if anyone would like to sponsor me just follow the link below.

Ruth xxx

https://uk.virginmoneygiving.com/ruthjohnston73

Just an eye

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Okay it’s taken me a week to gather my thoughts, and I don’t feel they are fully gathered yet so if anybody reading this can help, please do.  Firstly, if I asked anyone would they do anything to save their sight I know what the answer would be. But this is the question that is exhausting me and suddenly isn’t as clear cut.

Last Monday I went for my regular eye check up. I knew my sight had got worse but I felt anxious as I didn’t really want to know how bad it had got. I didn’t want it confirmed. I went in to see the nurse first for an eye test and as she handed me the little glasses I felt sick. She asked me to cover my good eye and see how many of the letters I could read. I took a deep breath and felt like crying. I didn’t want to know. In May, my bad eye could see about the fourth line down, now as I put the strange glasses on I could see the big fat capital ‘A’ at the top of the chart and one other letter underneath. There was a moment of confusion as the nurse was checking which ‘A’ it was I could see, hoping it was one a few lines down and then a sobering moment when myself, my husband and the nurse noted that it had got that bad. She handed me glasses with lots of holes in to see if this would improve matters, this only made it worse as the big fat ‘A’ disappeared from view. I tried not to cry. What does it matter? It’s just an eye? I’m still here?

I changed the glasses over to check on my good eye and I raced to the very bottom of the chart to reel off what I could see, only getting two of the tiniest letters wrong. Thank goodness that eye is so good was my thought.

Waiting to see my consultant I felt sick. Apprehensive. I wasn’t sure why as surely there was nothing to worry about. She called me in and appeared sympathetic that my sight had deteriorated. She seemed surprised that it had happened so fast, since May she noted. I actually knew it had happened since July so even quicker. My eye was dilated and the eye test began. This was where my anxiety reached boiling point again. I think after a cancer diagnosis that fear that is etched and scarred on your memory, the nausea, the sweating pounding heart, the inability to eat, sleep or function is always so close to the surface. One wrong comment from someone, a look, a feeling, has you spiralling back into its clutches and that was where I was heading again, as she paused and measured, paused and measured. “Look to the left.” Pause. “Now look to the right.” Pause. “Up a little bit.” Pause. While all this is going on I’m thinking “Oh F**k I’m going to vomit.” My husband told me after that he was scrabbling for his phone googling ‘oedema in the eye- what it means?’ The couple of minutes waiting to hear what she has seen, is vile.

“Yes I can see why your sight has got worse, there is a build up of fluid. Remember you had it before and it cleared up spontaneously? Yes so it’s come back, but the tumour is looking good….” And breathe. Sod the fluid! The tumour is looking good. And try not to cry.  She continued by telling me that the tumour was flat and remains in remission but she feels it may be worth re-investigating whether the injection in the eyeball would help my sight. She explained that Avastin injections could help clear up the fluid so could restore some of my lost sight. What needed to be checked was how far the dreaded ischaemia has travelled as Avastin doesn’t help with this.  So I was sent for photos and imaging and will be back to see her in a few weeks to see if the injections are worth doing and if I decide to have them.  Decide to have them? This is the crazy thought going through my head that I’m trying to work out.

Now I know I’m a chicken and don’t like the idea of an injection monthly, but my issue is that I am going to lose the sight in that eye anyway. That is fact. The radioactive plaque was placed too close to my optic nerve to save it, so how long can Avastin hold off the inevitable? If it’s only for a year, do I want to have an injection in my eye for that? And that is three injections over three months, I’m not sure how often they are repeated.  If it could restore the sight for longer then yes of course it would be worth it. Then I started reading about the side effects. I asked people on the eye cancer group what side effects they had had, the replies varied from ‘Avastin is a miracle it restored my sight’ to others who said it caused dry gritty eyes and had no benefit. It can cause redness in the eye, which of course will fade over time, but it is there as an obvious reminder that I had eye cancer. Something my youngest sensitive daughter does not want to be reminded of. She cried for about three weeks after I got the marathon place, as for her this was proof I was getting better. People that are ill and have cancer can’t run the marathon, “my mum can because she’s better,” were her thoughts. Travelling for monthly hospital appointments and coming back with an irritable red eye for a few days is not something I want if the outcome isn’t worth it. There was also a risk of cataracts. I’m 43! I don’t want cataracts. Now I know all the risks listed aren’t necessarily what people will experience. The risk of cataracts may be very low and these are things I need to discuss with my consultant, although I’m  sure even she won’t know whether or not the injection will work and what side effects, if any I will experience. She will probably suggest I just give them a go. I feel a little like I should and am veering in that direction but I’m not completely there yet.

The fear that the Monday appointment brought with it, reminded me that this is how I will feel again very soon as my MRI approaches and I’m at the 2 1/2 year point.  I keep hearing people say they had mets discovered at 2 years, 2 1/2 years, 3 years and I want to run away. I stare at them thinking maybe there was a sign that they would get it, a sign I don’t have. How are they different to me or are we the same?  I went for a run on the Tuesday and cried a little as I ran. I felt pleased I could run as it helps me to calm down and I needed to, my thoughts were all over the place. I felt stupid for feeling upset when there are so many people worse off than me. It hasn’t gone to my liver, it is just an eye. But I think we all have down days when things feel bad, days when I want to scream that I don’t want this f**ker in my life anymore. Scream that I want to be able to look at my calendar and not think about scans and what ifs? Guilty for feeling down about it. Surely I should feel positive all of the time? I also felt scared about losing the sight in my other eye. I ran with my 80 year old dad and felt jealous that he is so healthy. Will I be alive at 80 and if so will I be registered blind? It’s a hideous sobering thought thinking about it all and I have desperately been trying not to. People say you can’t worry about the future as you don’t know what’s round the corner and I know it’s true, but I think we all have times where those thoughts take over.

So If I asked you now would you do anything to save your sight would your answer be the same? If anyone has a crystal ball and can tell me what to do I would be most grateful. Failing that I might just flip a coin.

Until next time take care.

Cheers

Ruth xxxx

Ocumeluk

 

Photo on 02-08-2017 at 14.47

As many of you know who have been reading my blog, I once ran the marathon. Yes I like to talk, (brag) about it. Hence the shock with a cancer diagnosis. Surely not? I am a fit youngish thing who has ran 26.1 miles. I can’t have cancer. But of course I did and I learnt quite suddenly and traumatically that cancer doesn’t discriminate against age, sex, fitness levels or marathon runners.

Ocumeluk stepped in quickly with all the knowledge and resources that I needed, I was wrapped in their warm safety net and made many friends along the way.  I am over 2 years post diagnosis, I am doing well other than having been overcome by a mild sense of madness as I am trying to win a place in Ocumeluk’s marathon team. Something I said I would never do again, it was something I had ticked off my bucket list. But I feel the urge to give something back. At present Ocumeluk are looking for funding so that more people can access MRI scans with contrast, as at present it seems not everyone is equally entitled to them, I am.  I am one of the lucky ones, but many have to fight to be scanned and this is wrong. These sensitive MRI scans pick up liver mets earlier than any other method. They are the gold standard as mentioned in the NICE guidelines but funding prevents many people accessing them. This inequality in healthcare and postcode lottery is really enough for me to want to put my trainers on and run.

Also I’m hoping to lose a bit of weight along the way, yes every cloud and all that and it helps keep my sanity, as my check ups and scans approach,  exercise, physical pain and exhaustion are my only coping mechanisms.

By entering the competition to win the marathon place I need as many likes/votes on their page as possible. I am struggling with this slightly.  Firstly, because I have to compete with someone else who wants the place. Someone else who has valid reasons for fighting for the place and I don’t like the idea of it seeming like one of us is more valid/important than the other. But I also know that all the sharing on social media is great for the charity.   I am sure both of us who are competing for the place have respect for each other in wanting to do it and the end result is that one of us will raise a whole lot of dosh for Ocumeluk.  Being up last night thinking about it made me realise that the likes/votes are not for who’s story seems more worthy, as everyone who has been touched by cancer is worthy, it’s my friends, my family, my friends’ family, the neighbours, the man in the corner shop and anyone else that I can accost in the street showing their support for me. Just as many people are showing their support for her and that in itself is a great feeling. That we have support and people wishing us well.

My other concern is that  I don’t have that many friends to ask to vote. Well not 500 anyway, I have  my 5 bestie’s and then about 20 other really good friends and then 100 plus FB friends but I don’t have 500! Where can I get 500 friends from in a hurry?   On the last count, yes I am obsessively checking numbers hourly…., oh okay, every ten minutes or so,  my ‘competitor’ had way over 100 more votes than me.  Where do they come from? I have squeezed everyone I know. I was on my last day of my holiday yesterday, lying on the beach when the first message came through that the votes can be posted so to get sharing. Sharing to who? In between running on an inflatable sea torture obstacle course with the kids and slapping suncream on various body parts of various family members I was busily messaging my friends shouting “Share! share!” I’ve got till Friday and I feel like I’m running a losing campaign. I was even contemplating asking everyone on my flight home last night whether they all had Facebook and if so could they vote for me. Desperate times.

So my last chance at drumming up business is through my blog. A friend messaged me a short while ago to kindly say that every time she opens her phone my ‘ugly mug’ comes up (her words), as her lovely family are frantically sharing my post. Lovely family, but thinking of moving friend off my besties’ list. But anyway, she suggested I write a blog. Write a blog? Have you seen the piles of washing? The unpacking? The food to buy? I’m exhausted after a late flight and not feeling that amused. But then I thought, I only have until Friday to drum up business. So what does it matter if the suitcases hang around ponging for a few extra days or the kids scrabble around empty cupboards for food? I can write a blog and beg you all for help whilst eating dry cereal with the kids.

So please, if you have Facebook, would you type ‘ocumeluk’ into your search bar and then scroll down to my video and like it? Then could you get a few friends to do the same, the neighbours, the man in the corner shop and anyone that you can accost in the street? And then even if I don’t quite hit 500 likes I will at least manage to keep a little but of respect and not lose so dismally like a complete loser.

Thank you lovely people. Share! Share! Share!

Ruth xx

 

 

Slowly, Slowly

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We can still see you!

 

So slowly, slowly my sight is deteriorating. I know the signs that changes are happening now,  it is when I struggle to focus.  I find I can’t read without placing my hand over my bad eye. That then kick starts my brain to forget the bad eye and see what my good eye sees. Which is everything. I also know now that this only lasts a few days, maybe a week. The sight then stabilises, my brain knows where it’s at again and all is happy in my head. So with things stable I  trotted upstairs to look at my bathroom clock to see if there was a noticeable change.

I discovered this trick at the beginning of my sight loss. I stare at the middle of a clock, cover my good eye and see what numbers I can see. My 12 to 3 o’clock have been gone for about a year, but there has been no obvious changes since. I sort of expected to see  half eleven to 3 o’clock now, but unfortunately it’s slightly more than that. I can just see the number 10 but nothing passed it, and the number 4 but nothing before it, that’s practically half the sight in that eye. I stupidly didn’t realise it was that much until I started to write this blog and now I want to bawl and cry that my sight is going and I should perhaps run around like a headless chicken and panic, but bizarrely I don’t because unless I had tested it, I wouldn’t have known that it had got worse, as my brain is so good at filling in the gaps. I would have happily been head deep in the sand wondering why I have days where I can get through 4 glasses! Yes 4 in one day dropped in the sink, when I was absolutely sure I had placed them on the side. But hey ho they were empty glasses, I’m not crying over spilt bubbles.

My eye consultant told me that although people dread their sight going, sometimes once it has gone things are better as your brain knows exactly where it is at and you adjust accordingly. I can completely understand what she means. For those few days when changes are happening I find it a complete pain having to close one eye to read. I did it in a restaurant recently, as I couldn’t read the menu and felt a bit of plum doing it, wondering if the waitress thought I was just a little strange.

The good thing though is it is only for small things, like books, instructions, medicine and ingredients. What’s a salty dinner between friends? I can still see my kids and cars, which is quite important as I drive the kids to school each day and I wouldn’t want to lose the children, however unsympathetically they shout at me whilst playing badminton in the garden, that my shuttle cock was out and their’s was in, and they are definitely right because I’m blind so wouldn’t know anyway. I sense they are cheating but as I am not even sure if my shuttle cock has gone over or under the net I keep quiet. I think that is a change in my depth perception. I just start to do a couple of slam shots to show the little brats that their blind deaf mum still has it! Oh yes, I may be partially deaf and blind but I can still thrash you all. And if you don’t let your mother off  her ‘out of the court shots’ due to her disability, I may ‘not see you’ at school and drive home merrily assuming you have all got the bus and just pour myself a glass of bubbles in the garden, in peace. Sounds like a plan.

So all is well. Sight loss doesn’t bring with it panic and fear. It isn’t a problem for me. School is almost out. The summer holidays are almost here. And that in itself brings with it a few bubbles of excitement in my stomach, so I better pop a bottle in the fridge so I can actually put seem real bubbles in my stomach later, why waste an excuse of ‘it’s Tuesday and almost the summer holidays?’

Have a great summer all.

Cheers xxx

Jacqui’s Story

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Since just before diagnosis  I have wanted to read about other people with eye cancer. Their personal stories. At the start I was desperately looking for people’s description of their first symptoms, wondering if mine were the same and if that was conclusive it was cancer. I then moved on to treatments. What treatments did people have and why? I now often search for stories on eye sight deterioration but mostly how long did it take for mets to be discovered. These patient stories help us all. Help us to not feel scared. Seeing people further along the journey coping, or  not, makes us feel normal. It is just difficult to find those stories, due to the rarity of our disease.

So a few people have agreed to share their experience of eye cancer on my blog, so that someone else out there, on their computer, Googling past midnight, feeling frightened, may feel less alone and less scared. Seeing people get on with day to day live somehow takes some of the fear away. So thank you to all those who have said they will share their story.  Now over to the wonderful Jacqui.

My name is Jacqui, I was 41 years old at the time of diagnosis – this is my story, it’s a bit long so well done if you get to the end!!!

In July 2013, I started to get blurred vision in my left eye. I was seven months pregnant and coming to the end of the year teaching infants, so I put it down to stress and/or being pregnant. I scheduled my yearly eye exam with my local optician for August, as I suspected my prescription needed changing, which it did. After receiving new glasses, things still didn’t seem right, so I went back for a re-test. This showed that my prescription had changed again and was put down to pregnancy, but another test was scheduled for two weeks later, just to make sure. This repeat test, on Friday 13th September, showed another change and more worrying (although not for me at this stage, as I was still in the ‘oh it’s pregnancy related’ mode) on the photos this time they could see that my optic nerve was swollen – not good. My optician said he would get me an appointment with a consultant optician, so I went home….and Googled. Big mistake! Nothing good came from that search.

Later that afternoon I got a call to say an appointment had been made for me at the nearest hospital, which was an hour away, with a consultant ophthalmologist for that evening, half past five. Cue panic mode. I had to get my husband home from work, sort out food etc. for our son Finnbar, who was three at the time, as we didn’t know how long we were going to be in the hospital.

At the hospital, I was taken straight to the Acute Care Unit, where they tested me for a brain bleed, MS and a whole host of other things that I have thankfully forgotten. After much debate, they kept me in overnight, finally admitting me at 11pm. Frank and Finnbar went home – Finnbar thoroughly enjoying the dark and spooky night. Screen Shot 2017-05-01 at 18.00.37

The next day the team decided that the only way forward was to do a scan of my head; initially they were reluctant to do so due to my pregnant state, but I had a lead apron placed protectively over my bump and a CT scan was performed. A considerable mass was detected. This was on the Saturday.

By the Wednesday, I was in Moorefields’ hospital having yet more tests, scans, photos etc. and none were conclusive, apart from the fact that there were two tumours – one inside my eye and one outside. At this point the team at Moorefields’ weren’t even sure if the two tumours were connected or two separate ones. My consultant wanted to do a biopsy of the tumour, but we had to wait three weeks for the aspirin I had been taking in pregnancy, to leave my system. To make things more difficult, I had to go to a different hospital, one with a neonatal unit, so that if the biopsy triggered labour, they would be able to deal with it! As my consultant at Moorefields’ said: “We are great with eyes, not so good on the rest of the body!”

We knew within the hour of having the biopsy that the tumours were connected and they were also malignant – I had, what is officially known as, Amelanotic Ocular Melanoma and they were of such a size that my eye could not be saved – I would need to have enucleation. Eye removal. This biopsy also analysed the tumour to determine the risk for mets. I found out at a subsequent appointment that I was high risk and this was a followed up by a letter to confirm as much. Although I had already been told, seeing it  brutally written in black and white shocked me.

But first….the small matter (if only, I was huge!) of my unborn baby….

An oncologist appointment the following week gave us more information about the enucleation and I was told that I had to make arrangements for my baby to be born that coming week. I was 35 weeks pregnant, so she had a good chance of being okay.

Back to the local hospital where my fabulous midwife ( I got a special one as I was classed as an older mother ha ha ha!!) arranged for me to have my baby by C-section the following Thursday. I needed to be admitted on the Tuesday, as I would need steroid injections in my bum to mature the baby’s lungs and because I had gestational diabetes (just another thing to add to the list!) the steroids would effect my insulin, so I needed to be monitored and hooked up to insulin for the 24 hours either side of the injection!

Emily was born at a good weight and a month later we went back yo Moorefields’ for my operation, I sat in bed with my now 4 year old Finnbar and explained how my eye wasn’t working, so the doctors were going to take it out. I explained I would have a bandage etc. and asked if he had any questions….”Yes” he replied, “How high do grasshoppers jump Mumma?”

The day before my op I had another scan where they found that one of the tumours was dangerously close to the bone, so they had to revise their surgery options and go for exenteration, which is removal of the eye, muscle and tissue and sew my eyelids together over the cavity. I wasn’t really prepared for this, but had no choice, so got on with it. I took a picture when I was all bandaged up to show Finnbar, so he wouldn’t be too worried and then Frank and I went home two days after the op and got on with normal stuff…for a while.

In the May following my exenteration, I had a course of radiotherapy on my eye socket – travelling up to London each day for 20 sessions. The travelling took about two and a half hours each way, for approximately five minutes of being zapped. It was tiring doing the commute and my socket became sore from the radiation, but these were all ‘normal’ side effects, and it gave me peace of mind that any stray/lingering cells left from my surgery were being blasted away. I also lost my hair in two big patches behind my ears, but was fortunate that my long hair covered up the bald patches. It grew back fairly quickly, although I did have a couple of months where I had curly bits sticking out of my otherwise straight hair! I also asked the lovely team (I had the same team for each session) whether I would glow in the dark after treatment! To be fair to them they didn’t laugh at my question…but sadly, no glow for me Screen Shot 2017-05-01 at 18.00.37. I gave my mask to Finnbar at the end of the sessions and he used it to be some sort of superhero!

I was down to have six monthly scans and in the February of 2014 I had an MRI, but the following scan in August was changed to a CT scan of my liver. I had read that I really needed an MRI, as CT scans aren’t as sensitive for the liver, so I referred myself (through my GP) to Southampton and an MRI was arranged for the October, 15 months after first noticing the blurring in my vision. I duly went and the initial reports were fine…but as I was ‘celebrating’ a year of living with one eye (much better going up/down stairs, but still rubbish at pouring wine!) I had a letter from Southampton to say that after closer inspection of the MRI, there were ‘suspicious masses’ in my liver that needed further investigation.

On the 4th February 2015, I went for another MRI of my liver – and knew the news wasn’t good when I saw the doctor wait for the nurse to come into the room before he spoke to me. Many tear later, we had a plan. It was a course of Ipilimumab to deal with the blobs.

We went home and Frank and I spent time dealing with the shock of it and then we got on with  stuff, as normal. The next day I posted on the OcumelUK Facebook page, about the appointment and was immediately flooded with messages – mainly about why I wasn’t having liver directed treatment! After a few phone calls (with OcumelUK acting for me) I found I was a suitable candidate for the new, experimental treatment of chemosaturation (Delcath). So I had this in May (major organising of childcare, with family coming to look after our children, so they could have as normal as possible routine).  Scans about six weeks later, showed tumours had stopped growing. I had the second part in the September.

Scans in the December showed one rogue tumour had grown, as there was a part of my liver that the team was not able to get the chemotherapy to, so we decided a resection was the best option. That was scheduled for early March 2016.

My resection was done, which involved another stay in hospital with my family looking after our children. At the consultation following the scans a few weeks later, the analysis of the tissue surrounding the tumour, showed there were lots of little ‘seeds’ – tumours too small to be seen on an MRI, so it was agreed that another course of Delcath was the best way forward, with a course of Ipilimumab before the treatment, as there was a wait on the Delcath. I had my third procedure in September 2016 and have had clear scans for six months.

Our children know nothing about my prognosis and we are going to keep it this way for as long as possible. Finnbar knows that I mUst go to hospital to get the bad blobs zapped/cut out of me and he is fine with that – we make a game of counting my bruises when I come home!

My next scans are in May, so we will see what happens from there.

 

 

Socks and Bruises….and Champagne!

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I wrote this blog in two halves. The first half was written before my scan, when anxiety levels were high. The depressing thoughts that I didn’t want to share before my results as it’s like spreading gloom. So if you want to miss the first half, do, I would and scroll to the results. The happy ending.

PRE SCAN

It started at the beginning of the Easter break, the realisation that it was April,  March had gone and it was the month of the dreaded scans.  I scrabbled for my phone to check for dates as  I didn’t have it engraved in my mind anymore. Surely that was progress? That my thoughts are no longer full of appointments, follow ups, scans and cancer.  It was three weeks away, I took a deep breath. Stay calm, I told myself, as I’m sure I’ll be fine. I’ll be one of the lucky ones, right?

That calmness lasted less than 48 hours, before the news filtered through that another Facebook friend had had worrying news. Her liver scan showed something. I felt sick, for her, for me, for the realisation that this cancer will take away 50% of us. And no one knows who it’s going to be. You end up offering useless reassurances, sending futile messages that ‘I’m sure its nothing, maybe just a touch of liver cirrhosis.’ Are you allowed to hope for that, rather than liver cancer? ‘Have a glass of wine.’ I encouraged, not sure what else to say, as I know that nothing anyone will say, will take away the mental anguish, the waking at night, panicking. We can laugh and thank each other for all the support,  but when night-time comes, you are usually all alone. With your fears and thoughts.

That night I had my first sleepless night in a long time. I thought I was relatively relaxed when I nodded of, I was tired, I had had fun with the kids, I think I had even been for a run.  Everything was in place for a peaceful night. So what woke me so violently from my sleep? And I say violently, because it is. It’s like waking from a nightmare, heart racing, body sweating, gasping for air. But I hadn’t had a nightmare. I couldn’t recollect what was scary. What had woken me. For those few seconds I couldn’t remember as I tried to wake my mind fully. Were we going on holiday in the morning? Had I forgotten my passport? Were the kids meant to be somewhere? Had I forgotten an important date? Then the realisation dawned on me. No it’s the fear of spread. Will the cancer have gone to my liver? Then I have to start telling myself why it couldn’t possibly go to my liver, convincing myself to believe my lies that it won’t happen to me and trying to make myself relax so that I can go back to sleep. Eventually I do. One day I cried to my husband that I wished I had never woken up in the morning. Not in a ‘I wish I’m dead’ way,  but  when I am sleeping, everything is good, when I wake up, I remember. And I don’t want to remember.

So April rolled on, it was mainly good scattered with the odd panic attack. The night before the scan was the worst. Questioning what they will see, how would I cope if the news wasn’t good, wondering if I’ll be one of the lucky ones. Tolerance levels are low, meetings with friends don’t happen. I know I’m crap company when my mind is elsewhere. I need to stop mid conversation when I start to panic and tell someone to shut the f**k up as I’m no longer listening, only just about breathing, but I don’t want to put my friends through that, or be rude, so avoidance is best and the intolerant, grumpy Ruth is for my patient husband.

The scan is becoming more tolerable, I request 80’s music and hold my breath to various songs from West End Girls to Heart Of Glass. Forty minutes later I leave wondering if the radiographer has seen anything. I take my bruised arm, from where the contrast was injected and some fetching red socks home as souvenirs. Socks and bruises, a constant reminder over the weekend that I’m awaiting my results. I managed to stay relatively calm over the weekend. I’m unsure how, I think it’s just the children don’t allow you the indulgence to spend time with your thoughts. Any minute I look like I’m not doing anything, I’m bullied into a swing ball competition or game of tennis. At the time I thought FFS can’t you just give me five minutes?! But in hindsight I’m glad I didn’t have those five minutes. The kids constant pestering allowed me to survive the weekend. And Sleep.

RESULTS

I felt calm until I stepped off at Baker Street station. Knowing my results were sitting on my jolly oncologists’ desk,  I felt like a child wanting to push someone to go in front. “You go first!” But of course I have to behave like an adult and  face the music. I felt sick, my husband felt confident. Confident it would all be okay, until they called my name to go up as jolly oncologist was waiting for me, that was when I saw the slight trepidation in my husbands face. The ‘what if?’ What if the results aren’t good?  We smiled at each other, encouraging smiles, now both feeling sick and walked in. Normally I’m greeted with an “all clear!” before I sit down, this time there was a pause as he mumbled something about the computer taking ages to load. Was he stalling till I took a seat? Did he want me seated to deliver bad news? The tumble of thoughts that go through your mind in seconds. And then, delivered with a big smile, the words I had been waiting to hear. “Scans all clear!”

The relieve is immense and exhausting. Straight away dates are discussed for six months time. Because this will never end. I questioned him about ‘the danger zone.’ He explained there is a peak at three years, once you get to ten, you can start to relax, although, and this is where he had a little giggle “I once had someone who got to 20 years before it came back!” My shocked face didn’t mirror his amusement and also managed to wipe the smile from his face.  He quickly tried to tell me that that was highly unusual and the treatments now to treat the liver are proving very exciting. He started talking about t-cells and shrinkage and 70% success and I thought, if anything ever happens to my liver, this man, who gets terribly excited about it, however hideous I find it, is the best person to take care of me. I’m in safe hands.

We wished each other a happy summer. I wished I was never seeing him again. He probably wished I had a slightly more diseased, exciting liver to be looking at. But that’s life, you don’t always get what you wish for. But for today I did. A happy ending. An All Clear Scan and a bottle of champagne in the fridge. It doesn’t get better than that.

Until next time. Cheers xx   unknown

We were all strangers once

 

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When I was first diagnosed with eye cancer, almost two years ago, I was desperate to meet others,  not just people with cancer, but specifically  with eye cancer. I searched for groups, but due to its rarity, there were none. This is where the online support group became a lifeline. Set up by the charity Ocumeluk, it’s a closed group where basically ‘stupid questions’ can be asked and normally a more intelligent answer is  given as a reply.

There have been murmurings over time about people setting up meetings. Getting together. But as time has moved on for me I was seeing this as something less important. Life takes over and I wasn’t  sure that I  wanted  a reminder about the fear, sleepless nights, and anxiety that befriends you and takes you in hand when first diagnosed. Keeping a safe distance was a healthy option for me. But when a ‘Facebook’ friend suggested a meeting I surprised myself by wanting to be involved, maybe it was because he was diagnosed at the same time as me, so we have messaged each other regularly over time with queries such as, ‘do you have a sore eye?’ ‘Can you see properly?’ and ‘Do you get scared?’ Over time we form smaller packs within the larger group. We are part of the Spring 2015 pack. We know who we are, some of us have moved on and had babies, some of us are having problems with our sight, and some of us are just putting our head in the sand whilst drinking bubbles, but that person shall remain anonymous.

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So that is how a  London meeting was set up. On Sunday I met up for lunch with eleven other eye cancer ‘friends.’ This is something I wouldn’t normally share as it is perhaps  of no interest to others, it merely requires a passing comment, a footnote, but I felt quite overwhelmed by the time I arrived home. Lying in bed that night I felt  emotional and I was trying to work out why and that is what I wanted to share with you today.

There are times in life we all feel that immense pride for others, strangers, that fill us with passion, inspiration and the feeling that life is there to be grabbed with both hands and lived. I feel it when I watch the London Marathon (yeah, yeah I know, going on about the marathon again! Did I tell you I ran one once?!), I feel it when I hear a story of how a youngster has overcome immense challenges to become the person they are today. Pride in strangers. And that’s what I felt on Sunday. I felt I couldn’t really do them justice by saying they inspired me, they are brave, it comes across as insincere and shallow. These people left me feeling far more than that. These people left me breathless.

One lady had arrived with her young, gorgeous children in tow and asked us, whilst they were out of earshot, to not mention that she is terminal as they don’t know that yet. Without pausing for breath she gleefully asked me if I knew where platform 9 & 3/4 was as the kids love Harry Potter. That was a moment in time I just wanted to shake her by the shoulders and question where it comes from? The ability? The strength? The perseverance? The whatever it is, I know that I lack and whatever life throws at me I know I will never have. In that second I wanted to remove my own leg and kick myself up the arse for being so pathetic. I was in awe.

It didn’t stop. We were amongst ‘friends’ where we could share stories and ask questions. A lovely elegant lady told me that she was conscious of her prosthetic eye, however much I stared I struggled to see which one it was and  when someone assumed  that it was her real eye, so asked her how her vision was out of it, we had a little laugh  as she responded “zero. it’s glass,” but I think that was the proof that no one else could tell, she looked amazing. She went on to tell us a story of how she had sat at the traffic lights once and was too vigorous in her eye rubbing. Yes you guessed it, the eye popped out! She was racing to put it in before any terrified passerby’s spotted it. There was no fear or horror from these stories. We were amongst peers, just as yummy mummies may share poo and vomit stories with no qualms, we shared our eye and cancer stories. One lady, far from home,   was working here whilst on a work visa when she was diagnosed, she has been dealing with this while being far from family and friends, again a moment when I wanted to boot myself.

Someone else made me realise I had missed a trick, as whilst in hospital having her eye dressing changed every four hours, she had decorated it with make up and pens in a different style each and every time. She then got so bored she started target practise with a nerf gun. I’m sure her aim was pretty poor so I wouldn’t have liked to have been her nurse. There was a gorgeous older lady, well passed retirement age who discussed research papers she had read about various treatments. I struggled to keep up with her sharp brain. And of course there was someone who may have noticed on my blog that I am fond of bubbles, so introduced me to the joining together of two of my favourite things. Bubbles and chocolate. And what is so wonderful about those two things are,  I can have them during the day without being considered an alcoholic.

So strangers no more.  Thank you, I felt truly privileged.  I feel a small  celebration is in order, so I’m off to pop a champagne truffle in my mouth.

Until next time.

Cheers!

Worrying about whether I have anything to worry about.

 

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So most of my appointments I’m accompanied by my husband as two ears (well three, if you actually count his two and my one), two views, two opinions are always better than one. But  on Wednesday  I trundled up on my own, as the appointment time was late and we had come down with a houseful of sick kids, Mr J was waiting at home as I reassured him I really wasn’t worried. Google found no horror stories so everything was good. I should know by now never to feel complacent, because this rare cancer sh*t will always grab you by the ankles, shake you and yell “what do you mean you weren’t worried?! Fool! Have you learnt nothing from this?!” No, I just like to stick my head in the sand.

Anyway I digress. I was met by my very thorough, conscientious, consultant, who definitely never leaves any stone unturned. She informed me that she had wanted to see me as the grey pigment from the ‘very good’ photos I had taken, could be one of three things. “The first, it could be the tumour growing through the white of the eye.” Sorry, what?! F**king google didn’t tell me that! I now wanted my husband sitting next to me. How did I think this was going to be O.K? I instinctively brought my fingers up to my eye, it was smooth, no bumps, surely not the tumour growing? Hang on a minute wasn’t I supposed to be in f**king remission?! She was continuing,”secondly it could be thinning of the sclera (white of eye) due to radiation.” Yes, I was thinking, that’s definitely what it is, “thirdly it could be the white cells called macrophages that come to mop up the debris of a regressed tumour. They sometimes leave pigmented staining on the eye. So let’s examine you and see what it is?”

My eye test was strange. Imagine a frosty windscreen where someone has just scraped away sporadic areas,  well this is what my left eye is like. I could read the same line as last time, but only because I was moving my eye up and down and to the side so I could pear through the clearer area of the windscreen. Then my eye was dilated and as I was waiting for the drops to take effect I had the ultrasound done on my eye. It’s very easy, you just close your eye, jelly is placed on your eyelid and then the probe just rubs gently over your closed lid. Measurement, 7.5 by 1.5, my heart started beating, that’s not right, it was 7.5 by 1 last time? It can’t have grown, I’m in remission? She moved the probe to another position so that she could see if she could get the previous measurement, it’s quite a  difficult thing to do as there are no markers as to where you measured from before, finally she said I think it’s the same, there just appears to be fluid there. Is that bad? Is that the tumour active again. No she reassured me, it’s due to the radiation. She then asked the question which has been keeping me awake at night since I saw her “How often are you having your liver scanned?” Why? Have you seen something that worries you? She smiled, “no, its fine, but I would like to see you in a month.”

My now dilated eye was examined and the grey pigment was confirmed as white blood cells, macrophages, clearing away the debris, I didn’t care about the bloody macrophages any more, I was wondering if she would be contacting my jolly oncologist like she did last time she was worried. But she smiled, she wasn’t worried, it is just better to keep to the routine of January appointment and then four monthly. Yes that makes no sense to me either. Why can’t I be four monthly now if there is nothing to worry about? We said our goodbyes, wished each other a Merry Christmas and I stepped out onto the street to call my husband and repeat everything that was said to me. I needed his opinion as I wasn’t feeling great. I left him with “why did she ask about my liver? she knows how often I have it scanned. She had just said to me your liver scan was clear in October? Why did she say that?”  Difficult questions to a now also worried husband. “I don’t know” Was the only response as both of us tried to find a viable answer. ‘I’m sure everything will be ok’ Is never the right response, something we both know.

I think everyone with a cancer diagnosis must spend so much time second guessing what is going through someone else’s mind. Wasting so much energy, worrying and  wondering if there is actually  anything to worry about. I hopped on the tube and made my way home. The evening was spent liaising with the wonderful people on my Ocumeluk closed Facebook group. I have come to the conclusion, with their help, that there isn’t anything really concrete to worry about, if there was she would have been straight with me. I think it is all quite difficult as it is such a rare cancer. The consultants don’t have vast amounts of research or previous patients with similar symptoms to reassure themselves and us that this is par of the course. No one really knows what par of the course is with occular melanoma. So it is best to upturn every little stone along the way.  Someone said “it should offer you reassurance that they are keeping such a close ‘eye’ on you” and yes I’m hoping that that feeling of reassurance will soon take over from the feelings of worry.

In the meantime I will concentrate on all the lovely things Christmas has to offer, mulled wine, mince pies, lots of chocolate and of course very cold, very bubbly bubbles!

A lovely friend told me that because I mention bubbles all the time and once signed off from my blog with a ‘my name’s Ruth, Im 43..’ I sound like an alcoholic signing off from AA. I told her she could have bloody told me that before I published it, rather than days later, when the 3000! Yes 3000 people viewing it have already made their opinion on me!

Anyway, just to reassure everyone I have a dodgy eye, not a dodgy liver -yet!

Merry christmas to you all. See you in January!

Grey eye

So my blogs are getting less frequent and I hope this builds a frisson of excitement/curiosity about the next one, rather than just thoughts of ‘lazy cow, what’s she up to?’ Various reasons stop me writing, I would like to say a thrilling life of parties and glamour but reality is it’s  usually just sorting out stinking p.e kits, taking sickly hamsters to the vet, and cooking meals for a family of five where usually no one agrees on what they want for bloody dinner.

Anyway my last blog was incredibly short and as you have probably  realised from reading my previous blogs, I struggle to express my feelings at the time. I find it easier to explain in hindsight. Not to my family and friends but to everyone else. It’s all just too exhausting when I am feeling pretty shattered anyway. So here is a rather quick explanation of my feelings, post ‘MRI all clear’….pissed off! That’s it. I was furious and tired. How? Why? Well I can only explain it by comparing it to a running race, a long one. ( you see that’s the marathon runner coming out in me! I ran one, once, years ago but I will live off that achievement for years!)  You do all the training for say, a 10k, and it’s hard, the weather’s shit, you’re tired but you finally get there, everyone’s cheering you on, you can see the finish line, hear the happiness from the crowd, but as you step towards the finish line, it disappears and moves another 10k, the crowd is leaving, shouting ‘well done’, and I’m left saying “but the race isnt over? Yes I know I should be happy, but I really wanted to stop now. I wanted to hang my trainers up and come home with you all, cheering and happy and celebrating. I’ve got to keep going. I’m tired and I don’t want to f**king keep going! Can you hear that? I don’t want to race any more!” That was how I felt. The apprehension and sleepless nights that accompany me round scan time are never going to go away. Every six months it will be back and I felt mightily pissed off about it. I know I’m lucky to have the scans, I know I’m lucky it was caught early, I know I’m lucky it hasn’t spread. It’s just sometimes I don’t feel so lucky.

So anyway I have moved on and allowed those feelings to blend back into the background. I am back to normal, happy (well usually a bit moany) Ruth. Again over this time some people have amazed me with their ability to understand where I am coming from or what I am thinking without me saying anything. I met a friend who I haven’t known for very long, and don’t see very often, but she said “I read your blog and thought yes that’s shit you must feel so annoyed at the lack of control.” I hadn’t said anything to her, she had just read ‘I’m off to drink champagne’ but she could see through it, she thought about how she would feel and it made me think, there are really so many kind, thoughtful people out there. People that have the ability to really think about a situation and know what you are feeling when I sometimes don’t know how to express it myself. It’s the lack of control that pisses me off. I want the race to stop, I want to take my trainers off, but I can’t. The lack of control makes me furious! But to put that fury to good use I have entered a half marathon, if this cancer is going to make me keep going I will run and raise money as I go. My just giving page will be up and running soon (pardon the pun!) and f**k the never-ending 10k’s (MRI’S), I will have my other finish line to get to which I will cross and finish and which I can go home from and celebrate with everyone else.

The other eye news is I have a grey patch appear on my eye. see below.

See nothing is ever plain sailing? Anyway I’m not really worried about this, just a little bit. I e-mailed the photos to my consultant hoping for a “Yes, to be expected see you in January.” But instead got a “This is a common occurrence after brachytherapy but would like to see you at my emergency clinic to confirm.” Confirm what? That is is the common occurrence or what? What else could it be? Anyway this is where google becomes your friend. When I googled back at the beginning, when I was first diagnosed, I was terrified, as everything pointed to eye cancer. Now when I google grey eye, no cancer related stories appear – hooray. I’ve been happily googling away, reading about discolouration, strange pigmentation, a man with high cholesterol, but no horror stories. I’m off to see my consultant later in the week, so if in the mean time anyone finds a story that grey eye means your head is about to drop off, please pm me so I can at least be prepared.

And ending on an even lighter note I just thought I would share my children’s helpful thoughts on grey eye matter. My eldest daughter wondered if it would spread? “Will it spread all over the white of your eye? you’ll look sort of demonic!” Thanks!

Middle child helpfully told me that I could get my eyeball tattooed. “People do you know? It’s fine?” As if she bloody knew, and she’s the one that faints at the sight of blood.

Youngest, most troubled child just asked “will you be ok?”

“Yes poppet, mama will be just fine.”

“Good! because there’s a really good film coming out called ‘A monster calls’ (yes you guessed it the monster is the cancer!) and I want you to take me to see it!”

F**king great! I will keep you posted on grey eye and let you know how the hideous film is that I will be forced to watch with my gorgeous, thoughtful girls! Better pop a bottle in the fridge just to see me through. Cheers!