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

 

 

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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

For David

 

Sometimes you don’t want to write. Not about cancer anyway, it’s crap and depressing and I don’t feel it is a huge part of my life anymore. Other than scan time when I’m petrified, I generally think of it as something that happened to me, not something that is ongoing.

Through the support network, Ocumeluk, I have got to know many truly inspirational people, people that I would choose as friends in real life and not just because cancer has thrown us together. I put those people in compartments, those diagnosed at the same time as me, those further down the line who have needed more treatment for recurrence in the eye, those who have needed their eye removed, those with liver mets, those who had plaque radiotherapy. In my head I have people to turn to for every eventuality. Someone who has been there, done that and bought the T-shirt.

My favourite people are the happy people, people who never seem to let it bother them (although we know of course it does). People who always want a laugh and can see the funny side in such sh*t times. That’s my type of person, as humour has definitely dragged me through my darkest days. This blog is for one of those people and who I felt was the same as me treatment wise. David was in my box of ‘treated and doing well.’ He always sent messages of encouragement when I felt scared and was just a bloody decent guy. He would sometimes share  my blog on his page which I found hugely complimentary.

When I came off social media for a while after christmas, he had posted the awful news that his scan had shown spread. So when I returned to FB I immediately regretted it. I was shocked and sad. I messaged him and he told me in brutal honestly what the consultant had told him. He was looking at a maximum of three years. His Facebook page was always full of pictures of him and his family, happy pictures with his wife, a man in love. What could I say? Humour bypassed me. I just replied ‘that’s sh*t.’ I hoped that within three years treatments would change and offer him a lifeline, I told him so. Tragically he never even had those three years. His wife informed us all on Friday night that he had passed away earlier in the week. An extremely kind soul gone.

The loss of anyone just creates that confusion of how and where? The slow realisation that no more message will come from him. He is no longer with us. And if that loss is felt so powerfully by those just close through a cancer group, imagine the immense loss felt by his family and friends? But I don’t want to be doom and gloom as I know he wasn’t. I have just struggled to feel lighthearted  while writing.

I thought back to Friday night when the notification came through that there was a post from his FB page, I hadn’t managed to open it in time before I clumsily dropped my phone down the loo! So I would just like him to know, wherever he is, that when people were offering condolences on Friday evening, I was fishing around a toilet at a Robbie Williams concert trying to retrieve my dropped  phone. I’m sure he would see the humour in this.

So I raise a glass to you my friend, wherever you are.  Wishing desperately that this blog wasn’t about you, wishing you were still in my box of ‘treated and doing well.’ I will miss your kind words, your crazy ramblings and your comments on our eye cancer group. I haven’t posted for a while on the group, but I know when I do I will wonder where your comment is, wonder why you haven’t messaged or replied and then I will remember,  that you have gone.

You will be missed. Be at peace.

Cheers my friend xxx

Regular Eye Check

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So I had my eye check up yesterday.  There was no fear or anxiety attached to this appointment. More just a moan that I had to travel to Harley street in the rain. Don’t you just love a British summer?

My husband asked me how I was feeling?  Fine, I replied, I’ve had no flickering or flashing and I haven’t noticed my eye sight deteriorating. So that’s all good isn’t it? I’m not worried at all. And I really wasn’t. I had more pressing matters on my mind.

I told my husband that it’s been two years since I was diagnosed. Two years ago I didn’t think I would ever be able to walk into an appointment feeling relaxed, two years ago I  didn’t  think I’d sleep properly ever again. Two years ago I wondered whether I would still be here or not and was hoping just to get my youngest out of primary school. But two years later here I am.

One year ago I started this blog. I thought I’d get bored quite quickly, run out of things to say, or find no one was interested in reading it, but one year later, here I am still waffling on. “So what’s the problem?” he asked, not really following my trail of thought. “What’s the problem?!” I retorted. “I wanted to have a celebratory birthday blog, it’s a year old, I’m two years down the line, everything’s good. I wanted to put a radiant photo (with lots of filter usage!) of myself  celebrating. But some f**ker thought it would be bloody hilarious to give me a great big STYE!!! I can’t put a photo of this on my blog, it will put people off their food!” He laughed as he went back to reading some financial crap. I wanted to shake him by the shoulders and shout how can you read about the worlds’ economy when I am sitting her with puss about to ooze from my eye?! But I didn’t. I left him to it, as I sat waiting to be called into my appointment, wondering whether to leave the stye well alone  or whether to perform some home surgery on it with a sterilised needle?

When I was eventually called up to see my ocular oncologist, she smiled at me, came over and asked how I was.  I could see her just staring at the monstrosity hanging from my eye lid. It’s one of those elephant in the room moments, do I answer her relating to my cancer or do I acknowledge this mammoth boil on my face? I decided it couldn’t be ignored. “Oh good, yes, other than this stye.” I laughed although I found it far from hilarious. “Umm” She replied, her eyes hadn’t moved from the spot since I walked into the room. “Maybe with all the massage form the ultrasound it might help it,” she offered encouragingly. Great, now I was thinking it was going to pop all over her bloomin ultrasound machine and I would have to sit and watch her wipe my pus off it! I sat at her desk ready for the questions about my eye cancer, but no, it was back to the stye. She recommended something she thought would speed up its demise. She wrote it for me on a card and even had a little feel. Did she want to squeeze it? I felt a little nauseaus.

Eventually, eventually we all managed to ignore the stye and concentrate on the real reason I was here. You will be pleased to know everything is stable. There is a tear in my retina, where the scar from radiotherapy was. This was a new but pretty irrelevant development. But it did make me think, after two years the radiation is still causing mayhem to my eye, it’s pretty potent stuff. My eye sight is remarkably good considering what has gone on there. I was told I would be blind in that eye within two years and I’m not. Sight not great out of that eye, but it’s not bad. The tumour is inactive which is the most important fact.  I will be back to see her in four months so can relax and enjoy the pissy British summer.

I couldn’t  go home and celebrate with bubbles as I am trying the 5:2 diet. Me and my stye sat with a peppermint tea catching up on ‘Line of Duty’ to celebrate. Today the bugger is no smaller and as I am meeting a friend for dinner tonight and don’t want to put her off her meal and I am having a starring role at my 15 year old nieces’ confirmation on Sunday, I am off to sterilise a needle.  I could just about face my consultant with the stye, I cannot face a group of 15 year olds questioning my niece on what her aunty has hanging from her eye lid! So home surgery it is.

Until then I shan’t be sharing my radiant stye photo with anyone, instead I have shared a photo of my dog Barney as he is so handsome and doesn’t have a stye and my ignorant princess Rosie, who likes to keep an eye on what I write and the birds outside. She also doesn’t have a stye. Until next time, have a glass of bubbles for me. Cheers! xx

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!

I Choose Life

 

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Rosie keeping an eye on what I’m writing!

On a  cinema trip with the kids recently, a trailer came on for Trainspotting 2. I sat there feeling quite nostalgic, as the film and actors seem to have grown up with me. I was in my early twenties when the first film came out, I was a struggling single mum, trying to make ends meet and had probably made various poor choices in my life. Obviously nothing as bad as the trainspotting crew! And now here I was, twenty years later,  watching the trailer, thinking how the characters have all grown up and become sensible, like me. I am now happily married with three kids and a mortgage living a sensible, forty plus year olds life. Ewen Mcgregor’s voice than echoed around the theatre “I choose life.” he said, and I wanted to stand up and shout “That’s like me too Ewen. I choose life.” The only difference being will life choose me?

That’s one of the things that I find difficult to cope with, when I ask myself, will I still be around in a few years? When the kids laugh and make comments about what they will all be like when they’re older, what jobs they’ll have, how many children etc. I smile and laugh too, but have that fleeting dark cloud that crosses my thoughts that says “Please let me be there. Please let me at their weddings and meet my grandchildren. Please let me see what beautiful strong women they will grow up to be because I desperately want life too.” So as I’ve said before, I do everything in my power not to think about it. I keep busy with things and people that make me smile and laugh. I don’t want to spend time worrying about it. I want to spend my time having fun. It doesn’t always pan out how you want it to though.

Recently I had a little sabbatical from social media, but ended up missing family and friends and mainly my eye cancer support group, so was back on within a month. One month. Within that month someone very to dear to lots of people in the eye cancer UK community had died and various others have had bad results back form the dreaded liver MRI. One person I consider a kind friend was one of them. I had thought I’d be catching up with happy memories and stories but was instead brought to a brutal halt that cancer is still very much part of my life. It had got him, would it get me? I wanted to scream. Why? He chooses life too and nobody seems to be listening! Not only is it bad enough to have to play Russian Roulette every six months, waiting for it to spread, but many people than have to fund the treatment themselves. Why? Because the cancer is rare, it’s terminal, so where would you put the funding? To prolong a middle aged woman’s life for a year or to pay for a lung transplant for a young child. It’s brutal, but that’s it. We know we aren’t top of the funding list however loud we scream “I choose life!!” So if anyone is ever looking for a charity to support, Ocumeluk is one that supports eye cancer and us.

And just a little aside to prove my point that ignorance is bliss, my lovely, almost 15 year old cat Rosie isn’t very well. She arrived when my 21 year old daughter was seven. She saw the arrival of the next two girls, who were often heavy handed with her, as only toddlers can be. Many a time I had to tell them to not carry her down the stairs in a head lock as poor Rosie couldn’t breathe and not to body slam her.  She never scratched or bit them. She then saw the arrival of a very large bouncy labradoodle, who she made quite clear too, she was boss, and managed three house moves without ever getting lost. We have now been told she’s on limited time and it’s just palliative care. We are all sad and devastated. Well all, apart from Rosie. She doesn’t know! She is ignorant to it and is more than happy living off fresh fish and chicken and being given fresh catnip daily and as many laps to sit on as she wants. Middle child told me that “it’s lovely as she can live the rest of her life like a princess.” And she can. An ignorant princess, which is the way to go. So I’m off to pop a bottle in the fridge so we can be ignorant princesses together.

Cheers xx

Cloud cuckoo land

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People who used to work with me will know, as I often said, I’m terrible at reflecting on my thoughts and feelings,  as I guess most people are. Who has the time to sit down and think through why you might be feeling upset or hurt?  I just ‘get over it,’ which of course may never sort a problem out. That is why I’ve been amazed at how reflective I have been over the past month. Really thinking about what makes me happy and what I want to do or change in my life, other than just coming off social media. This is where the book came in. Writing makes me happy and keeps me occupied. But don’t get me wrong, I am under no illusion it will ever be published or read by those other than who I pay, or who take pity on me, but it keeps me focused on positive things. It creates dreams, where I see my book published and in Waterstones and people telling me how wonderful it is. Dreams where I have an agent who negotiates a six-figure deal to have my book published and sold to a film company and it is then made into a box office hit. Dreams where I’m played by someone who most resembles me, probably Jennifer Anniston? Catherine zeta Jones? Cindy Crawford? Or an amalgamation of the three. Dreams where my leading man is…Sorry was I getting carried away?  It gives me a warm feeling that others may get from participating in a sporting event, the cyclist who dreams of being in the Tour de France (I wonder who?), playing golf with friends but dreaming of winning the open, selling one of your paintings, coming first in a baking competition (the dream of my youngest), finishing a marathon (tick. I’ve done that. Have I ever mentioned it?)  or spotting a rare bird on your many walks with your trusty binoculars. And that is what is important, having those dreams. Living your life but living your dreams too.  Life is too short to live with regrets of what you would have liked to have done or achieved. I want to give it my best shot now because you never know how long you have left. And just in case you’re worried, I’m not turning into a know it all guru on life because of my cancer experience, I have just realised that this hideous cancer experience has  helped me find my dream.  Where acupuncture and counselling failed, living in cloud cuckoo land has succeeded. Through doing this blog I have found something I enjoy doing as much as my husband loves lycra. If that’s even possible.

My other change is I am no longer answering messages about my appointments and check-ups. I felt I needed to take back some control over who I talk to about it. This may seem very odd when you are reading all about it on my blog, but that is written when I am ready. People worry and care and that causes them to pick up the phone to tell someone else what I may have just shared with them, which eventually comes back to me with phone calls and interrogations that I wasn’t ready to share openly and discuss. My blog is less personal and allows me more control. People then send lovely messages and e-mails rather than firing questions at me. All much more relaxing. And I love receiving them.

And now my update on yesterday’s eye appointment. It was all good. It fact my eye consultant described the tumour as ‘beautiful.’ Not sure that is an adjective I would use to describe it, but I understood her meaning. It was reacting beautifully to the radiotherapy. It is now very pale. No fluid near it. Sort of the same size, which I have come to expect from my tumour. I think of it as a steady sort of chap. One who doesn’t really like change or doing anything excitable. I can cope with that. I don’t want a crazy maverick living in my eye, causing all sorts of problems with his unpredictable conduct. So the same size is acceptable behaviour and I am on a four month reprieve -hooray!

Lastly – we have a teenager in the house again. Middle child has turned 13! Luckily there was no “God I hate you!” moments this morning, but I am well prepared for them when they come. The wine cupboard is fully stocked.

Have a good few months everyone.  I’m off to follow my dreams (or live in cloud cuckoo land, but both places are good places to be) as you never know you may be looking at the next JK Rowling who  looks a lot like Cindy Crawford  (No laughing please!). But don’t worry I’ll keep my feet firmly on the ground.

Cheers!

I’m not ‘brown bread’

 

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Just to reassure people I’m still here. Alive and kicking, maybe just a bit fatter after gorging on lots of delicious  food over the holidays.

Over the Christmas break while approaching the New Year I started to reflect a bit on my life, to think about what I wanted  to change.  How I wanted my year to pan out and what I wanted to achieve. I’m quite impulsive, I make a decision and don’t give an awful lot of thought to it, I just do it. Which is what happened when I thought, I don’t like Facebook anymore and  that is something I want to change for 2017.  I don’t want to ‘like’ my hundredth Christmas tree. Saying amen to a child with cancer on my timeline will not cure them and I don’t want to pass something on because then money will come my way. It won’t and you’re stupid to believe it will. So as I was turning into an intolerant, grumpy women I decided to say Goodbye to Facebook. But that was the problem, I should have said “Goodbye” instead I just turned it off, deleted the app  and continued on with my eating and drinking too much. Well it was Christmas – any excuse!

So I have had numerous texts and e-mails from friends asking if I was O.K? Had I ‘defriended’ them? No, I have sort of just defriended myself. Was I unwell? Not as far as I’m aware. And then there are the friends who you just contact via Facebook, who you have no other contact details for, not because you aren’t good friends but just because it’s easier to message through it. A few managed to contact me via this blog which was very resourceful.  I had planned  to not update my blog until next week, after my eye appointment. But sitting enjoying a glass of wine with my husband last night I was mentioning that a few people had contacted me and been worried, I felt bad as I should have said I was going and not just disappeared. He said that people would think I was ‘brown bread.’ What? I was confused. “You know, dead!” He obviously found it mildly amusing. As we were chatting about whether to go back onto Facebook to just say “goodbye” or not an e-mail  came through from a friend who I have known for almost 13 years, as our daughters share the same birthdays. I haven’t seen her for nearly 10  as she moved quite far away.  She was concerned that I had become unwell. It made me think that because people know me and I have had cancer, they are tainted with it too. Whereas I always used to think it was just me that worried every ache and pain was new growth, I now realise that others worry about that too. And I’m sorry for that. I really am. Just like I don’t like it when my youngest daughter writes stories about illness and losing someone, I don’t like it that people worry about me. I wish you had all just thought “where’s she gone? Unsociable b*tch!” I’m sorry you had to think of this ghastly disease that seems to permeate every interaction of my life. I want to reassure you all I am well. I have started jogging slowly after a hamstring injury and am all wrapped up in my two youngest daughters’ January birthdays. More cakes and bubbles? I hear you cry. Well if you insist.

My other big sharing news and a much larger New Years Resolution than leaving Facebook is something I only shared with a few people last year as I felt slightly embarrassed and not good enough. But I am sharing it now as I am determined to do it and finish it. My book! My blogs decreased as my book writing increased. I am 20.000 words into a teen fiction. My dramatic (dyslexic) middle daughter is my proof reader and she is “loving it!” Now if praise like that doesn’t make you go and pop a bottle in the fridge and celebrate, I don’t know what will!

Happy and healthy 2017 everybody!