Support Rosie’s friend in her quest for cancer patients

Rosie often used Fighting Genghis to talk about her friends, especially the Seven Bitches. One of them, Andrea Pellegrini, started a petition several months ago calling on David Cameron to change the law on benefits payments to cancer patients. You can see her petition here: http://tinyurl.com/oed3mqr and her appearance on London Live this morning here: http://tinyurl.com/neo26o4

You go Andrea.

Elliot

Everything changes and the guilt of living

Today I received a beautiful message from Caroline, one of the ladies on the YBCN (Younger Breast Cancer Network) Facebook group. Last year Rosie had organised a YBCN get together in London. It’s where Caroline and she met. I remember the day. Going off to meet the group of women all carrying the same internal scars and scares. I never properly understood the fear that breast cancer instills in a woman living with it. My appreciation of this disease has grown since Rosie’s death. But how can a person who has never had cancer ever really understand the impact it has on the sufferer?

Through her blog, Rosie found great comfort in being able to express her innermost thoughts. And being a vibrant part of a number of online cancer communities she also found a way to deal with this most appalling of diseases. But I think it was through the YBCN event in London that she found real comfort from the certainty of understanding of her fellow victims.

Caroline talked about two aspects of this disease. For those who successfully live through and beyond their cancer treatment they suffer the pain of “survivor’s guilt”. Until I’d experienced Rosie’s cancer to its bitter end this really wasn’t something which had occurred to me. I’d heard this phrase used with respect to survivors of the Nazi death camps during the Holocaust. Most famously the great Italian chemist, Primo Levi, who wrote movingly about his experiences. But survivor’s guilt and cancer? Caroline wrote about this. Even though Rosie’s treatment had failed last year she still maintained her connection with those who were living healthily after theirs. Rosie was happy for those who, unlike her, had escaped the secondary diagnosis. Somehow her humanity allowed her to continue to support those whose luck hadn’t run out. But then that was Rosie.

Survivor’s guilt can, I imagine, become an appalling, all-consuming beast. But that can’t be allowed. For those who survive, they must take the gift of life and do something special with it, whatever that is. Rosie would have been furious if her death meant others couldn’t make the most of their lives.

Caroline also talked about change. Her experience of cancer has changed her for good. Her words, “I’m not the person I was before this all started” are something I can identify with. As I sat alone in synagogue this morning I thought about my place in this world – and my children. It occurred to me that for the last year our lives have been odd, different, changed. Rosie and I had tried so very hard since June 2014 to keep things “normal” in the Choueka household. Despite the inner turmoil created by this disease Rosie and I both knew that we couldn’t bring this into the children’s lives. Of course we needed them to understand something of what was going on but it was not right or fair to expose them to the awfulness of the situation, or at least not until almost the very end.

The most obvious change, with the benefit of hindsight, was the creeping sadness. Rosie and I experienced a happiness together that I only dreamed of in my earlier years. And with the arrival of the children that simply multiplied. Yes there were bouts of illness, health scares and the like but nothing we couldn’t deal with; that’s life. Cancer was the game changer. Looking back on it I’d say it felt like a storm rolling in from afar. The winds rising up, the sky darkening and the rain, thunder and lightning tearing across the horizon at breakneck speed towards an unsuspecting town. That’s the way it’s felt.

Now the storm is calming. It’s still raining. It’s still dark. But far out on the horizon I can see daylight. The sadness is most firmly still with me, with Natalie and with Joey. I know at some point the storm will pass, the skies will brighten. But what will it leave behind? I don’t know. Most certainly everything has changed forever but it’s far too early to see exactly how. In that awful journalistic cliché, only time will tell.

Elliot

Rosie’s legacy

As I was putting Joseph to bed tonight he said, as he has done most nights recently, “I miss mummy”. And my reply was the same, that I miss mummy too. He’s a perceptive little boy. Almost immediately, with such a caring tone, he said “Don’t cry daddy, don’t be sad, be happy”. He gets that from Rosie. How can a little boy who has had to endure the loss of his mum at such a young age, have the strength of character to support his dad in that way?

Before she went to sleep Natalie wanted me to tell her more stories of mummy and daddy, so I got out our holiday book. For anyone who didn’t know Rosie, organising holidays were pure nirvana for her. Or as she put it “Rosie porn”! She dreamt about holidays and would start planning our next one before the last one had barely finished. Our holiday book was also firmly Rosie’s responsibility. After each holiday she would religiously write down the most salient points of that particular trip. My involvement was incidental. I was entrusted to print out the photos which Rosie and I had selected.

I’ll admit that I haven’t looked at the book for a while but when I did I was astonished. I’d forgotten that not only had Rosie written about every single one of our family holidays since Natalie arrived, she had also noted down each one of the trips and breaks that she and I had been on since we first met. It’s just one more immense gift that she’s left for Natalie, Joseph and I.

Before she died, one of the many instructions Rosie gave me was to write about our final holiday to Israel in May. Natalie asked tonight if she could write the entry in our holiday book. It seems right that this beautiful task should pass from mummy to daughter. The odd thing about it is that our holiday book has just one page left…

Elliot

Rosie looking stunning on holiday
Rosie looking stunning on holiday – 24th May 2015 Herzliya, Israel
Waiting to go out for dinner - 24th May 2015, Herzliya, Israel
Waiting to go out for dinner – 24th May 2015 Herzliya, Israel

The end of shloshim, of mourning.

Yesterday was the end of our shloshim, the 30 days following the death of a loved one. During this time there are a number of rules and customs to follow. The worst for me, and Tali, was not shaving. Over the course of a month I became more and more bedraggled. Rosie hated me unshaven and so does Tali. For that reason alone I was very glad to be able to shave again. I’m not going to attempt eloquence on this subject but simply suggest that you take a look at Sheryl Sandberg’s beautiful words at the conclusion of her shloshim. My thoughts are so very similar to hers.

What have I learned over the last 30 days? Well a lot. Rosie was incredible. I know what you’re thinking, “surely you knew that already?”. Well yes, but I don’t believe I ever appreciated how incredible she was. Searching through our filing cabinet at home I came across a folder labelled “Qualifications/Certificates”. It was stuffed full of the results of Rosie’s years of hard work through academia. GCSEs (all A grades) AS and A-levels (all A grades) her double first in Jurisprudence from the University of Oxford, letters congratulating her on winning prizes at school and at university, her trainee  report from her time at the European Commission, utterly glowing. I am simply in awe.

Since Rosie’s death I’ve been knee-deep in paperwork. Every Tom, Dick and Harry needs to see her death certificate, needs to know her National Insurance Number, needs to be sent obscure pieces of information that no human being really knows. But guess what? Rosie did. What’s more she filed that information away so that I could find it. Everyone should have a Rosie.

I have also learned that her reach was extraordinary, both in terms of geography and people across all walks of life. From the high-flying lawyer in Boston, USA, to the lady who runs the nail bar round the corner from us. She was a truly impressive people person. Of course I knew all of this instinctively but it’s not until you lose someone like Rosie that you really begin to appreciate them and their great qualities.

My focus in life has now shifted. Before 16th June my priorities were Rosie and the children. If I’m being honest, over the final few months of her life more of my time was spent thinking and worrying about her than the children. Now, my every waking moment (and a great deal of my sleep) is consumed by thoughts and worries for the children. How are they going to grow up? Will they remember mummy? Do I have the right clothes for school? When do I allow Natalie to have her ears pierced? On and on and on. None of these questions are alien to parents, but now they are entirely my focus, by myself, without my beautiful Rosie to consult. But then I suppose that’s what life as a single parent is like. I’m not unique. I’ll just have to get on with it.

When people ask, as they regularly do, “how are you doing?”, the answer I give is that I’m more up than down. I think that fairly clearly sums up life right now. I’m keeping myself busy with work, with the children and starting to think about establishing Rosie’s charity. Before she died Rosie was insistent that we set up a charity to raise funds to research secondary breast cancer. In life she always had the last word, and that won’t change now she’s gone. So with the help of our very best friends and closest family we will do that. We will create a charity which will raise money to go towards finding answers and maybe a cure to this horrible disease, AND it will help to cement Rosie’s name in everyone’s memory.

Elliot

A year and a day

One of my friends told me during shiva that the first year and a day would be the hardest. By then most tasks that could have been done with Rosie will have passed by without her. But in my mind I was already thinking about my children’s bar and batmitzvahs, their first days at secondary school, first days at universities, graduations, weddings. But I know what my friend meant.

Even during the darkest, most painful days of her fight against Genghis, Rosie still had the strength and foresight to write a number of letters for a later day. At the end of 2014, just a few days after the start of her second round of chemo she produced a classic piece of writing. This was a letter for the future. Way into the future; or at least that was the hope. The email she attached the letter to was entitled, “To be tucked away for safekeeping”. She was making sure that the future care of our children, without her involvement, was put in place now so that she could expend her energy on fighting the cancer.

And to me she wrote three beautiful letters. One way to look at them is as love letters. From one lover to another. And I’m happy to read them in that way. But more importantly and far more characteristic of Rosie they are roadmaps for the future. What she wanted me to do in the immediate aftermath of her death, for the years to come, some important messages for the children, passwords and account details and a plan for all of her most important possessions.

Now, I’m sitting here today, in full health (I hope) with a lifetime ahead of me contemplating a similar task for the children. But I simply can’t bring myself to do it. My reticence is borne out of complete exhaustion, my continued disbelief that Ro is no longer here and an unwillingness to tackle something which I must do for the future. It’s something I’ll have to return to.

But back to the topic at hand. Today was a day of firsts. Today was Tali’s first school play without mummy there. Rosie was the perfect mother. I can’t remember a play, parents evening, school fair or other school milestone that she didn’t attend. No matter how busy with work or how ill with her treatment she would always turn up to support our daughter. Tali would have made her proud. Even with a twisted ankle our little girl carried on and performed her heart out. (Check out her performance below). It was very, very difficult for Rosie’s mum and dad, and my sister and me. As we left the school we collectively shed a number of tears. We didn’t need to say anything. We wept for Rosie, not being there, not able to support her little baby.

And the other first was Joey’s first visit to school, ahead of his start in September. This was really hard. Joey is not a clingy boy. In fact in a group of children he’s usually the first to leave his mum and dad. Not today. Today he really didn’t want me to go. Even after I left him in the classroom he still insisted that one of the teachers came to find me. This raises my parenting dilemma for now and the future. Was his unwillingness to be left just nervousness about being in a new environment, with new people? Or was this separation anxiety connected to the death of his mummy? I suppose we’ll never really know but it does add an extra layer of complexity to being a single parent. I don’t think there’s a simple answer. But of course if you think otherwise do tell…please.

Elliot

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Joey and two of his friends at school

To life. Make it a good one.

Life. What’s it all about? Well I’ll be damned if I know. The idea that someone as good as Rosie, as well-loved as Rosie, as fantastic as Rosie could be plucked from this world at the mere age of 38 is just unfathomable. I’ve always taken the view that it’s up to you to make your life count and make of it what you will. You’re a long time dead so make your mark while you’re here. Well Rosie most certainly did that.

For a few nights in a row now Natalie has asked me to tell her stories about her mummy. I take it as a healthy sign that she’s wanting to ask and hear about mummy. For me this throws up a confusing mix of emotions. Of course I have some wonderful memories and I want nothing more than to share them with my darling daughter. But at the same time it is painful to relate these stories because I know that I’ll never again be able to create new memories with Rosie. And yet I am also delighted that Natalie can ask me to do this for her. My biggest fear is that through the loss of their mother Natalie and Joseph’s lives are going to be blighted in some way, that they won’t achieve their potential and that I’ll be responsible. By talking, I know that Natalie is helping herself to deal with this crappy situation and hopefully as the years roll by she’ll become the woman she was always destined to be.

It is absolutely true to say that Natalie, Joseph and I have a lifetime of memories to create together and I hope for their sake, if not for mine, that there are many years if not decades of those to come. But sitting here, writing this just three weeks since Rosie left us, I can’t begin to imagine how I’ll get through. I know I will. I must. I owe it to Joseph and Natalie and I most certainly owe it to Rosie. She’d be furious if I didn’t.

I’d be lying if I hadn’t contemplated life without Rosie. Since we received the awful news in June last year there have been times when I’ve done nothing but think about life without her. And then there were numerous nights in December and January when we held each other and cried. Words were pointless. We both knew where this was going to end. We knew that. And we planned for it. But all the plans can’t deal with the pain.

Today as I stood in our kitchen I noticed a few roses blooming. So I took a photo. It doesn’t make me feel any better but I know Rosie would have loved it. So here it is. For you Ro.

Elliot

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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