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.



My final post

I never thought I would be writing this post at least not yet. A couple of weeks ago we went on holiday en famile. It was supposed to be a family treat to give me strength for facing more surgery in the form of a second lumpectomy and SIRT. Instead, it turned out to be the straw that broke the camel’s back. I seem to have picked up some sort of bug just before or on holiday, which rendered me really low. That, together with the break from chemotherapy, made my resistance to the liver lodgers impossible to deal with. I spent a lot of time feeling very low and lying on the bed in quite a lot of pain and unable to eat very much, with some days being unable to eat very much at all. Not much fun when you’re on holiday to eat and enjoy the lovely Israeli food we had sought out. I also had my first experience in 20 years feeling sick and throwing up on the airplane on the way back – puking twice on the way home. On top of that I needed a wheelchair at either end of the journey to help me through the airport, which was some shock at the beginning of the holiday and a grateful relief at the end.

I came straight back to a consultation with my breast surgeon to discuss the lumpectomy. He was horrified by the way I looked and insisted that if I had not got better within a matter of hours that he would pull me into hospital. He wanted me admitted to get better, if not for the immediate lumpectomy operation then certainly in time for the SIRT a few days later. And that was it.

I have spent the past ten days in hospitals on the edge of London away from home and my darling children, unfortunately declining swiftly. The infection that rendered me low meant that my liver cannot continue to fight the cancer and there is nothing that can be done and I have been told there are now only palliative options for me. I am hoping to get into a hospice soon although it seems to be a one in one out policy for these wonderful places, for obvious reasons. There at least I hope there will be a degree of peace and a pain-free environment there for me. No one will be able to tell me if it is a few days or weeks, but it certainly won’t be long.

I have been deluged with messages of love which have been lovely, overwhelming, thought provoking and very welcome. There have been many comparisons to my blog and other writings on the subject. I don’t want anyone to compare me to anyone else. This blog, “Fighting Genghis”, was never meant to be a competition for admirers or fame and fortune. I have no issues with the words “fight” or “loss of survival” or “die” unlike other people I have known. It was just my story of what I have been going through over the past almost year. Please remember that. Everyone’s journey is different, everyone’s journey is unique. Please remember me and my family.  Thank you for reading. Rosie