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?*



*a little nod to Jed Batlet


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.