Getting over the hump

As time goes by life becomes just that little bit easier. Without Rosie I must find my own course through challenges and obstacles, through life. What I do with and for my children is now entirely my decision. It’s up to me to interpret what I feel is best for Natalie and Joseph based on Rosie’s letter to her closest friends, our past discussions and my intuition. The same goes for the rest of my life; what I do, how I find happiness.

My life has in some ways become something that I never anticipated, never contemplated, never imagined. But despite the obvious upheavals I am beginning to rediscover my self-confidence. Actually, if the truth be told it’s not so much a rediscovery but a personal awakening. Before I met Rosie it is fair to say that I wasn’t the most confident of people. Over our years together she instilled in me a sense of self-worth, and confidence. It is with that confidence that I am starting to rebuild who I am. Yes I still doubt myself. Yes I still question my value compared to others. But I know, for the sake of my children and more importantly myself that I can and will become a stronger person, with greater self belief; much as I was when Rosie was by my side.

This morning I’ve been watching an amazing online masterclass given by Aaron Sorkin on the craft of screenwriting. For those of you who don’t know Sorkin, he is the brilliant writer behind numerous films, plays and TV series. But the one which will always be the one for me is ‘The West Wing’. Rosie and I watched all seven series over and over again. At times I could recite whole tracts of script or précis any episode, recalling the name and the episode number in question. Sad? Yes I know, but everyone has to have something that gets them going!!

As I have written before, in her final letters to me Rosie gave numerous instructions. Most were big, some were life-affirming and some were difficult to carry out. In amongst those letters was one innocuous direction, “make sure you watch West Wing with the children”. On the face of it that seems like an odd thing to add to one’s final letters. But I know Rosie and know what she meant by that. Firstly, she knew that no matter how old the series would appear to our delightful little children there were still lessons to be learned. Friendship is priceless; be honourable; stand by your principles; stand your ground; don’t be swayed if you know you’re right; always do the right thing, no matter how hard it might be. But second, she knew how much we enjoyed watching it together, and that by watching it with the children I would remember her fondly. And she was right.

The problem is that since she died I really couldn’t ever see myself watching the programme again without her. Until today. In that masterclass Sorkin references some of the classic scenes, which are then shown. Having watched those clips I now realise that I am ready to see The West Wing again. And with that realisation I also recognise a number of other aspects of life that I am ready to begin re-engaging with. Life really is for living. No it’s not straightforward, and it certainly isn’t like an episode of The West Wing with a neat and tidy ending. But the life I’m living is the one I choose to live, in the best way I know. I have no idea what the outcomes will be but I will certainly never regret trying. What’s next?*

Elliot

 

*a little nod to Jed Batlet

Why?

Why why why?

This Chanukah was a bit lonely without mum, she would have remembered all the lines to all the songs. She lit the candles perfectly, she sang the songs really well (not, ha, ha, ha) and she did everything really really well! AND, don’t forget PRESENTS! They were fabulous, absolutely fabulous. I LOVED them I didn’t want Chanukah to end…….. but it did, boo hoo hoo.

My Dad tells me stories every night about my mum,  they are really fun ( and lovley). I understand it all but my 5 year old brother doesn’t, poor him. He misses her so much.I really don’t think that it is fair for anyone to get cancer buuuuuuuuuuuut ……….. it has to happen in the end.

You DO know that it is annoying being the only girl that lives in the house, right? Of course you do ( I hope) well anyway I hope you understand why. I am writing this blog.

Natalie

Giving a little back

I’ve spent a lot of time, more than usual, thinking about Rosie over the past week or so. It’s six months today since Rosie died. At the beginning of last week, together with our families I attended the Chai Cancer Care fundraiser. It was a truly amazing event. 800 people enjoying a lovely meal at the Roundhouse in Camden in support of an important cause. We shared a table with three other engaging, fascinating, genuinely lovely people. I’ll come back to them in a moment.

On 4th February of this year, 2015, Rosie posted this on her Facebook page,“So many of you have offered to help since my diagnosis and have asked what you can do. Here it is – please support CRUK this World Cancer Day. Or for something closer to home please donate to Chai Cancer Care which has been a real lifeline for me.”

By now you’ll be wondering what Chai Cancer Care is, if you don’t already know. Well they’re an incredible support charity, with their HQ near to our home. Rosie benefited from a variety of their services. And others in the family, including me, have also turned to Chai for help. It’s because of this that I decided to be a part of a fundraising video, which you can see below. I was asked by their chief exec, Lisa Steele, if I would take part. I really didn’t have to give too much thought to that request. This was my way of giving something back.

The other person in the video is Tara. It was she, together with her husband and best friend that we shared our table with. I didn’t know Tara but coincidently I had grown up just round the corner from her husband Jeffrey. Tara, like Rosie has secondary breast cancer that has spread to her liver. I’m over the moon to say that she’s battling on and her treatment is having a positive impact on the liver lodgers, as Rosie would call them. I didn’t really know Jeffrey but speaking to him about our shared experiences it felt like I’d known him forever.

Before Rosie died I’d had a conversation with someone very senior at my office. His wife also has cancer and continues her fight. He said that we were members of a very exclusive club that no one wants to be a member of; that of husbands whose wives were living through cancer. Cancer is an oddly leveling disease. It’s unimpressed by wealth or intellect, it picks its victims with little regard for the world around them. And it gives its bystanders, friends and relatives, a strong reason to come together to fight.

And that’s precisely what we’re trying to do as we start to put in place the building blocks for Rosie’s charity. I’m hoping before too long that I’ll be able to talk about the charity here. In the meantime I carry on, together with my children, to make the very best of what we have together. As I say in the video, “Life is for living”.

Elliot

Out of the darkness – Chai Cancer Care 2015 from Creative & Commercial on Vimeo.

Your starter for ten

On a day-to-day basis life without Rosie has become a series of practical tasks that I must get through. I’ve talked about that before. On the whole I manage to get things done, without showing too much emotion. But then once in a while something pops up that makes be feel really sad. I’m then reminded that what I’ve lost isn’t simply an extra pair of hands but the yin to my yang.

Rosie and I didn’t watch a lot of TV. Anyone who has followed Fighting Genghis will know that Rosie became addicted to trashy box sets on Netflix, latterly “Once Upon a Time”. I should add that I didn’t partake in this binge viewing (apart from Breaking Bad which we both hoovered up). But one of the TV programmes which we did watch together,  semi-religiously, was University Challenge. Now as you know Rosie was a smart cookie, and so during any given edition she’d be able to answer a handful of questions. I lagged  behind somewhat. When I did get a question right it was a minor miracle and something to celebrate. In response Rosie always gave me that “I’m so proud of you” look that a mother gives a child. It made me feel warm inside. Last week I watched University Challenge for the first time since she died and lo and behold I got a question right. The sound of silence was deafening. I felt sad all of a sudden.

On the subject of sadness, Joey was talking about missing mummy and being sad. As I usually do in these situations I told him that I miss mummy and feel sad too. It’s quite unbelievable what this little trouble-maker said. “Don’t worry daddy, I’ll take away the sadness”. How do you respond to that? Hopefully one day he’ll read this and understand that statements like that reaffirm my belief that he and Tali will be OK. That they’re going to grow up to be bright, well-adjusted individuals and that with support like this I know that I’ll get through it, with them by my side.

Rosie was my sense checker, my sounding-board. She was there to make sure that my sometimes outrageous ideas didn’t escape into the outside world. She was also the one person in the world that I could talk to without feeling stupid. If I had a problem at work she would be there to give me her perspective. She had no axe to grind, no point to prove. Her advice was free and it was thoughtful.

She also often gave professional advice, that came free. This week at work I was dealing with a minor issue which involved American lawyers. Having been married to a lawyer for many years, and having a step-dad and a brother-in-law who are lawyers I’ve become quite fond of their pedantic, precise ways of writing. And this week’s missive was a classic of the genre. Without Rosie’s perfectly formed view I now have to think “what would Rosie do?”. It’s not easy to get my head around but frankly if CJ Cregg can do it then I can have a damn good try. If you haven’t got a clue what I’m talking about then you obviously haven’t watched The West Wing. Rosie would most certainly approve of that one.

On a separate note I want to thank the lovely people at Rosie’s law firm, Bristows. Not only are they helping to establish Rosie’s charity (name still to be decided) and continue to be a massive support with other aspects of the charity, but they also invited Natalie and Joseph to their annual children’s Christmas party. This is the third year they’ve been. The first year was a month before Rosie started with Bristows. Last year was the second time, when Rosie wasn’t feeling so good and then there was yesterday. The lady who organises and runs the whole event, Marie, greeted us with such love and warmth. I’ll admit that I didn’t find it the easiest of events to attend but I knew the children would enjoy it, and they did. It reminds me of the massive impact Rosie has had on this world. Thank you Bristows.

Finally, I want to express the pride I have in my beautiful, clever daughter. If you’re reading this blog then chances are you read Tali’s. Her blog was direct and to the point. It expressed her feelings and, most importantly, it’s helping her to deal with her grief. It came as no surprise to me but her blog was read by twice as many people as my posts. Long may that last.

Elliot

The highs and the lows

Life really is a very odd thing. In many ways it’s really rather boring and predictable. There’s a regular beat, an almost monotonous rhythm to daily life. Getting up and out of the house, packing the children off to school, going to work and so on and so forth. Every family has it, I imagine almost every individual experiences it. For me it’s been a challenge to find an efficient and practical way to do these mundane things. I think I’m getting there. In an odd sort of way life really is rather hum drum. Like putting one foot in front of the other life is a series of steps to get you from one place to the next. At least that’s the way I view it right now.

As ridiculous as it sounds I now realise that without Rosie I don’t have someone to share that with. The sheer act of sharing the day-to-day things with your loved one never struck me as anything important. It now seems so very important. And when it comes to the big things, well the hole Rosie’s left behind is colossal.

Today is Joseph’s birthday. It’s a close call but I think he enjoys birthdays more than Rosie ever did. That’s saying something. If you know me or have read this blog you’ll appreciate that I’m not a natural when it comes to birthdays, least of all arranging parties. Once again, and I fear that this might be the last time, Rosie came to my rescue.

Now follows a statement of the bleeding obvious.

Rosie was super organised.

She was so organised that she’d already arranged Joey’s birthday. The time, the place, even the entertainment. She’d bought plates and going home presents and knew exactly how the party would play out. So when it came to actually running the party it was a whole lot easier than it otherwise would have been. For anything left over which Rosie couldn’t do, the food and drinks, the birthday cake and the multitude of other things that have to be done, well those were taken care of by the holy trinity: my wonderful sister, mother-in-law and nanny. They were a truly amazing trio who ensured the party went off with a bang. Thank you ladies.

This morning Joey awoke to see several presents lined up ready to be opened (these were on top of the 40-something presents he opened after his party yesterday!). He was ecstatic. He had a great deal of fun opening his presents from the family. And lastly a card which Rosie left for him. In the last week of her life she was determined to write a few of the children’s future birthday cards, she struggled but she managed. Joey was happy to see the card but otherwise nonplussed. I on the other hand was in tears as I was catapulted back five months. In an attempt to console me he put his arms around me and gave me a big hug. As Rosie used to say, “what a nosh pot”.

On a separate, but probably not entirely unconnected note, last night Natalie asked me if she could write a blog. She said she wants to say things on the blog that she can’t say out loud. I asked if she’d like to use Fighting Genghis. “Yes” was her immediate and enthusiastic response. I asked if she’d like to read mummy’s first blog. Her answer surprised me. She told me that she’d read the first entry with Rosie while we were on holiday in Israel. I wonder why Ro did that?  Did she know her end was fast approaching? Or am I reading too much into it? I’ll never know.

Anyway, watch this space and if you see a blog written by Tali please read it and pass it on. I have no doubt it will have the searing honesty and emotion with which Rosie wrote.

Elliot

Happy birthday Rosie

On this day, 39 years ago, Rosemary Sara Kalman was born. This year, for the first time, we must celebrate Rosie’s birthday without her. The sense of loss is as great today as it has been at any point over the last four months. Rosie lived for birthdays, so much so that she had already started planning her 40th; including her list of invitees. Who knows, perhaps next year we will feel able to have a proper party. For now I comfort myself with the company of our two wonderful children, and in a gesture that I’m sure Rosie would appreciate the three of us will light candles on a cake and sing happy birthday.

I’ve said this before and I’ll no doubt say it again. If you have a loved one give them a hug and tell them how much they mean to you. Live for today and don’t worry about getting older; in fact thank whoever or whatever you thank for being able to grow old. It’s a gift. Don’t take it for granted.

Happy birthday Ro. Happy birthday my darling xxx

Elliot

100_0327

Two birthdays and an anniversary

October was always a big month in the Choueka household. Rosie’s mum has her birthday on the 14th, Rosie had hers on the 15th and we celebrated our wedding anniversary on 24th. Last year, while in the midst of her first chemo battering, Rosie managed to find the strength to celebrate all three; one in particular in great style. Rosie alluded to it in this post. Anyone who knows me knows that I’m not one for birthdays or celebrations, but Rosie and I weren’t going to let our 10th anniversary pass without marking it in some spectacular way. The day unfolded amid carefully planned surprise after surprise. It culminated in the gift Rosie had always wanted, a beautiful eternity ring, which had in part belonged to her grandma. As she said, there were tears. It’s only now almost a year later and less than four short months since her passing that I realise the full irony of the gift.

I’d always half jokingly said to Rosie that I wouldn’t giver her an eternity ring until we’d been together for an eternity. After all, I reasoned, an eternity ring should be a sign of achievement not an aspiration. Well how bitterly right I was. It was our eternity together. It certainly was for Rosie.

Sitting here now writing about this month it feels so odd that while we remember two important dates (my mother-in-law’s birthday will, I hope, still be a celebration) the country also marks Breast Cancer Awareness month during October. Just before she died Rosie instructed me to set up a charity. She wanted it to raise funds to research secondary breast cancer. She wanted me to publish this blog as a book and she wanted any money to be split equally between the children and the charity. Since June I have been thinking and working on both. With the support of a dedicated band of friends and family we work towards the establishment of the charity; and with the help of a different set of equally dedicated friends I am navigating the difficult world of publishing.

I’ll admit that the concept of establishing a charity to do such important work hangs heavily over me. I know, because I’ve been told by anyone who cares to tell me, that it is fantastically hard to start a charity. There are so many competing for limited support. Why the hell would I take on this challenge while I have two little children to care for? Well the answer is obvious. Because Rosie asked me to. There were scant few things that Rosie ever asked of me that I didn’t (eventually) agree to. My friends, quite rightly, question the wisdom of doing this right now. A few days ago my best friend asked if I’d be starting a charity if Rosie hadn’t asked me to. “Of course not.” I replied in a flash. But equally quickly I added that she did ask me to and so I had to. No question.

And yet I feel so very torn. The charity will do great things. It will raise large sums for a significant and important cause. But most importantly it will help to cement Rosie’s legacy for a long time to come. When our daughter talks about selling her Disney Princess dresses and dolls to raise money for “mummy’s charity” what option do I have? Really?

So we will work to set up the charity and unless some excellent reason prevents me from doing so I hope to enlist your help at some point. Watch this space as they say.

In the meantime I continue to care for and nurture my little children. This morning before the sun rose Joey climbed into my bed. He asked me, as only a four-year old can, “When is mummy coming home?”. What can I say? I’d like to know the answer to that one too.

Elliot

My hats off to all single parents

A statement of the bleeding obvious: The past weeks have been a challenging time. For the children the utter devastation, at such a tender age, wrought by the loss of their mummy is practically unimaginable to me; and I say that as someone who lost his dad aged 15. For me, the loss of my best friend, my guardian angel, my everything is simply unbelievable. It still hasn’t sunk in that Rosie is no longer here and that she’s not coming back. The emotional impact is constant and will be with us forever.

On a practical level I’ve had to get used to being a single dad. It’s probably not as colossal to deal with as it could have been. Rosie and I have a phenomenally close family, all of whom have rallied round to help me and the children. We have a wonderful nanny without whom I have no idea how the children would get out of the house in the morning. The children receive tremendous emotional support from all of them. But at the end of the day when everyone has left our home it’s just Joey, Tali and me.

A few weeks ago Natalie, Joseph and I went away to Dorset. I booked the holiday soon after Rosie died, mainly because I was encouraged to plan a summer holiday. I’ve never been a holiday person – a break from work is enough for me and in years gone by (before Rosie) that might just been a week of lazing around at home, reading or watching TV.

But Rosie lived for holidays. She raised the task of planning one to an art form. No sooner had the last holiday finished than the next one was being planned…and sometimes it was sooner than that. And in her capable and willing hands it was something which I was more than happy to leave her to look after.

Having to actively think and plan a holiday for the first time in many years was a bit daunting. As it happened I needn’t have felt so overwhelmed. You’ll be unsurprised to hear that Rosie had already done the hard work. Last October we went on a wonderful family holiday to Suffolk. The hotel was tailor-made for families like ours. Young children who don’t have a volume control, middle class parents who haven’t the energy for slumming it and perfectly good food. That hotel is part of a small chain and Rosie had earlier this year talked about its sister hotel, Moonfleet Manor. That had stuck with me and that’s where I booked.

So mid-summer arrived and the three of us drove South. Natalie had insisted that she wanted our first family holiday to be just her, me and Joey. The holiday was a success and greatly enjoyed by the children. For me it was a challenge. Anyone who has children will know that they don’t always want to do the same thing at the same time. And this was most certainly true for my two. If Tali wanted to swim then Joey certainly didn’t. If Joey wanted to play skittles (which he did several times every single day) then Tali wanted to do absolutely anything else. I tried persuading them to take turns, but that didn’t really fly. At the end of five nights away I was frankly happy to be getting home, for a rest.

I know the children enjoyed themselves, they said as much.  But I was more tired at the end of the holiday than at the start. Of course this will get easier with time, at least I hope it will.  Apart from the challenge of two strong-willed children it simply brought home how much I miss being with Ro. Yes, it would have been easier with Rosie being there, for sure. But at the end of the day when we all went to bed (at about the same time) I didn’t have Rosie to talk to. And I still don’t. And that is the hardest thing about losing her. Her absence is a constant reminder of what I’ve lost and what the children have lost.

Elliot

With thanks…

It occurs to me that almost three weeks on from Rosie’s passing I have yet to publicly thank a number of individuals and groups of people. Shocking as it sounds but Rosie’s illness (if you can call it that) lasted less than a year.

Over the course of Rosie’s diagnoses and myriad treatments she was cared for (care being the prime word) by a great many people from a variety of professions. Since her death I am constantly amazed by the distance over which Rosie’s warmth, influence and personality stretched. People who never met her; secretaries and administrators who had spoken to her on the phone or communicated by email have been moved.

Working back from the end there are three groups of professionals whom I would like to start by thanking. The nurses and doctors at The Marie Curie Hospice in Hampstead, at Watford General A&E and AAU, and at Bushey Spire Hospital. Over the last year Rosie had visited or stayed in far too many hospitals and by no means had either of us expected the end to come in the way it did, and as quickly. But the care given by these three groups of people was exceptional.

My great regret is that Rosie didn’t “enjoy” the care and surroundings of The Marie Cure Hospice. By the time she arrived in Hampstead she was already on the sharp decline, and although she was lucid and awake on her final Friday afternoon and part of Saturday she never really had the opportunity to appreciate her surroundings. The staff there were superb. As the relative of a terminally ill patient it’s rare that conversations are directed at you. So much of my last year has been spent listening in on Rosie’s conversations with her medics. This was the first time, by necessity, that the conversation was directed at me. To be talking about the managed end of the life of the person you have loved for over twelve years, and who you thought you’d grow old together with, is surreal and upsetting to say the least. But the doctors and nurses at the Hospice were compassionate and attentive to our needs as a family.

At Watford General Rosie wowed and shone. The Rosie I fell in love with and adored (still do and always will) was very much still with us. In spite of her serious illness she had the ability to make professional, detached nurses cry. When she talked about her journey with Genghis and the impact on her life, on the children’s lives and on mine the hard exteriors crumbled. In the NHS you expect no continuity of care, and whereas that was a big issue with her time at Watford, I can’t say that about the way the nursing staff looked after her. There are six nurses, who I won’t mention by name for fear of upsetting others, that sought out Rosie at the beginning of their shifts and made a significant effort to cater to her every need, both medical and emotional. That made the world of difference to her.

And at Bushey Spire Hospital. The staff was as attentive and caring as you’d hope. None of us expected that Rosie’s admission to Bushey was to be the beginning of her final chapter. Rosie and I were both perplexed by the deterioration of her condition, and I’m afraid to say so were the medics. But the care that they gave was all we could have hoped for.

Throughout her treatment Rosie’s path crossed with many others; breast care nurses, oncologists, radiologists, geneticists, reflexologist, counsellor, healer and others. All of whom gave their all for Rosie’s benefit. If I started to name everyone now I’d most certainly forget some and so won’t try.

There is one group of people who Rosie connected with in a different way to all of those I’ve already mentioned. The angels (that might seem over the top but they really are angels in my eyes) who run and work at the Elstree Cancer Centre. Since her first chemo in August 2014 these ladies have been Rosie’s nurses, carers, confidantes and friends. I mention one of these wonderful people by name, but this is not to diminish the importance of the others. Veronica, or Ron, connected with Rosie very early on. She had the same no-nonsense approach to Rosie’s treatment as Rosie herself. She was strong, friendly, professional, committed and sometimes dismissive of me! But that’s fine. Her approach to me was exactly that of Rosie’s! In an odd sort of way Ron and the other women at the Cancer Centre helped me through Rosie’s treatment.

I’d now like to turn my attention to two individuals who were with Rosie from the very beginning to the very end.

Mr. Muhamed Al-Dubaisi and Professor David Miles. Rosie wrote about both in her blog. During the past year I was asked a number of times whether I was happy with the care that Rosie was receiving. At every step of the way my answer was always an emphatic “yes”. Mr. Al-Dubaisi, her breast surgeon, was the first person she met at the start of this horrible journey. His approach mirrored Rosie’s. “We’ll deal with the facts as we find them and plan accordingly”. Coincidentally Muhamed was the surgeon who treated Rosie’s mum. So we went into this process feeling very, very positive.  Even when we had serious cause for concern towards the end of 2014 we still felt confident, though maybe slightly less so. The last time Rosie saw Mr. Al-Dubaisi was on 1st June 2015. He planned to remove the tumour from her breast before SIRT began. On seeing her that evening he expressed his concern at her condition. He wanted to admit her that evening, but typical of Rosie she wanted to get home to have a good night’s sleep in her own bed. She wanted the children to see her at home. Perhaps she knew that this would be the last time. Muhamed was happy to allow this on the condition that if she didn’t feel better the next day then he’d admit her. The rest, as they say, is history.

And finally, Professor David Miles. There really are no words to express my gratitude to David. Rosie and David connected on an academic and intellectual level. I’m happy to say that I was often playing catch up during their consultations. Rosie had made damn sure to do all of her research ahead of each meeting. There was very little that David could tell her that she hadn’t already found out for herself. And when she asked questions David respected her all the more. The support he gave throughout her treatment was as important as the medicines being prescribed. I truly believe that the way he spoke to her gave Rosie the energy to battle through the way she did.

And in the final days of her life David was still there. Even after transferring from his private care to the NHS, under the care of no particular consultant (that’s most certainly the topic of a future blog) he was still there for her and for me. He came to Watford General to talk her through her treatment and he sat by her bedside to break the worst news possible. He was at the end of the phone morning, noon and night. In the final days his texts supported me, which in turn allowed me to support Rosie.

To Muhamed and David I owe a colossal debt of gratitude. Of course I’d rather be thanking them for helping Rosie achieve remission, but that was not to be. Instead I have to thank them for having dedicated their time, and dare I say love, to the care of this unique patient. To those of you who were part of Rosie’s final year please accept my most sincere thanks. And the thanks of Rosie Sara Choueka.

Elliot