On Thursday (7th May) I had my eleventh and second last chemo. Next Friday, in less than one week I will have finished this 12 course of chemo. And then… well. Chemically induced menopause. Monthly injections, and if I tolerate these then out with my ovaries. Hormone treatment, Letrozole – pills I take at home for as long as it is effective. AND now…Germany. Through the fantastic generosity and army of love, we have nearly £40K in the bank, which is what I needed to confirm the first 12 day session at the Clinic in Gottingen, Germany. I return every 4-5 weeks, four times, for follow up vaccinations and hyperthermia to the liver and can pay for these per visit.
But it feels slightly scary to be so close to the end of my current holding pattern. Chemotherapy ties you to a pretty tight structure and routine which has its downsides, but it is predictable. Moving into the next stage should feel liberating and the younger boys punched the air after chemo eleven in celebration. It does not feel a reason to celebrate. The more I read about chemotherapy the more I doubt its longer term benefit. I have had goodness knows what poisons infused into my veins, my immune system and good cells have taken a battering and the cancer cells beaten into temporary retreat. But what we know about mestatic cancer is that it will simply regroup ready for a more aggressive come back at a later date.
I believe in the potential to heal and to stave off that come back through all the strategies I am employing; hormone therapy; immunotherapy; diet etc plus the supplements and therapies I talked of last week and some days I feel powerful and strong about my ability to influence that date. But then doubts creep in. Last week was one of those weeks. I think my fasting wiped me out and I was tired and a bit wobbly after chemo 10. Then through the week I heard of the deaths of 3 beautiful, strong, young women. From cancer. All relatively sudden. I wondered if they also believed they could influence their destiny. I know they did.
The news of these deaths followed the very peaceful death of my mother in law. She died two weeks ago. She had for many years been ready to leave this world and was impatient to do so. The day she died she was in hospital as her heart began to fail. My brother in law had spent a happy couple of hours with her chatting and she was peaceful and did not focus, as she could do, on her impatience to move on. He kissed her goodbye. Left the hospital. When he reached Kilburn on his way home he saw a missed call from the hospital. His Mum, (the kids called her Nana, she was Jane to me) had just died. The nurses simply noticed she had fallen into a coma and then died. Really a perfect death, given her fear of a miserable, nappy reliant, dependent and stressful end of life. We have since emptied her flat and spent days sorting out boxes and rearranging furniture in our own house to accommodate some of hers.
She lived in sheltered accommodation and with high demand for this her two boys had a quick turnaround to clear it all out and hand over the keys. Despite the grief Rupert has from losing his mother, there is relief it was peaceful and that she is free and he is getting comfort from having the various bits and pieces of her, embroidered cushions, vases, pictures, photos and the odd piece of furniture, around him.
The process of clearing out after the death of a loved one is such a tangible representation of the intransigence of life. We are here and then we are not. And all that stuff, all those things that make up your past and present become only important as physical reminders of you. I am a terrible hoarder, I have boxes from my childhood, I have kept every diary I have written since the age of 9, photos (hundreds, probably thousands of them and many just lots of photos of the same moment from slightly different perspectives), old books, university essays, letters. Remember letters? At the boarding school I went to from the age of nine, my life line to the outside was letters. My parents often lived abroad so I could not call or see them often in term time, so telephoning was out of the question in those days, there was no email, no internet – and letters was how we communicated. I have recently gone through the box of old letters I kept from those days. Where will they go when I am gone? They are not very exciting letters. They do not speak of great discoveries, or love affairs, of adventure or deceit. They talk about how the flowers are doing in the garden and how my Grandmother is. My mother’s in particular, scrawled in her great big writing – 10 lines to a side, tended to be filled with attempts to coordinate our family diary and my movements. Remember that time before the internet and mobiles, when you had to try and coordinate with the time delay of the postal system? So what do I do with these letters and a few attempts at needlework from needlework class that I have kept all this time, old identity cards – bus passes, old passports, young persons rail cards and the many photo box photos with friends, squished inside the box beaming out.
Seeing Jane’s remaining possessions reminded me again of the task I have to slowly sort all of this out and work out what to do with it. I am in fact happy I will have that chance. It is a chance to reflect. Look back. Enjoy memories. I used to wonder - What would be the best way to go? Suddenly, run over with no knowledge that today was your last day? Or a longer, certain but more protracted end of your life. The former gives you no option to mourn your departure. You say no goodbyes. You do not get to speak openly and freely with loved ones to communicate your deepest thoughts, and hopes and fears. To look back deliberately and laugh and to look forward and design a future for your family together, which may not include you, but which you have been able to participate in. But if killed instantly you would never even register and so mourn the fact that you did not have the chance to do all these things. And given that we simply never know what each day will bring, that thought alone is a reminder that we should really take every opportunity to do all of these things as if we might one day soon die. Because we will.
The first of the strong women, after Jane, who died last week, was Callie. I met her only once, she was a longish term girlfriend of Rupert’s before I met him. She had an eleven year old daughter and two years ago was diagnosed with myeloma (a cancer that affects the bones). We are not in contact but through the grapevine she heard about my diagnosis and only a few weeks ago she sent Rupert two books I have mentioned in my blog; Remarkable Recovery and Radical Remissions. She had I am sure from her sharing of these books, investigated, as I have, alternative ways to help manage her cancer and probably, like me, felt hopeful she could. Rupert exchanged a few texts more recently and knew she was complaining of a cold. Then last Saturday he received a call from a mutual friend to say she had died. It has been an emotional week for Rupert anyway with the loss of his mother, and this death was hard, not only as the loss of someone he once loved and of a mother and woman too young to die but as it reminded him of the unpredictability of this disease. He found it hard telling me as he worried it would destabilise me for this reason, which to be honest it did a bit. But I cannot be shielded. I have to absorb and manage.
The next death we heard of last week was of Samantha – a 28 year woman from Brighton who I came to hear about through cancerispants as she also had been fundraising to help her get treatment in Mexico. There was due to be a fundraiser in our local Exeter Street Hall. And then came the news that having returned from Mexico she died of a lung infection. She had cervical cancer, two young children and she had from what I have read worked during the short time since her diagnosis to raise awareness of cervical cancer during pregnancy, rare, but in her case not recognised. Another strong woman using her voice in her last months of life. A sudden, if inevitable death. http://www.mirror.co.uk/news/uk-news/tragic-young-mum-whose-cancer-5641656
Finally, through kind friends who have shared #cancerispants I came across the family of Amy Watts. She died on March 5th from colon cancer. Again young (37), vibrant and hugely loved. Her family and friends had launched an incredibly successful campaign to raise £100K in just 15 days to get her to Leeds from LA, where she was living, to have an operation which had the potential to extend her life. They raised the money needed in this very short space of time but Amy did not make it and died before she could have the surgery. Her family very kindly donated £4000 of this fund to cancerispants to help me get treatment. The campaign was called 'Hold Amy’s Hand' and I went to look at the website and saw the photos of this beautiful, alive, happy person surrounded by loved ones and tried to absorb that she was no longer there. Her death was so sudden and I can imagine the hope her and her family felt when they found a surgeon willing to operate and raised the funds so that they could do this and imagined the hole that was now left. www.holdamyshand.com
So it was a week of the reality of life and death. The loss of a loved family member, a woman of 84 who was ready to go and of 3 young women with futures and presents that were full of potential and life, not ready to go. Part of my journey, if I am honest a very large part of my journey, is about acceptance. About conquering fear and living and relishing every day. As Ella frequently says to me…’is everything OK right now? Then everything is OK’. When I feel physically strong it is so much easier to keep this in the fore of my mind and to smile everyday. But last week not only did I feel rather weak and tired but the news of the above deaths, almost daily, played heavily on my mind. Perhaps it was in fact the emotional impact of this that made me more tired and fearful.
I return to that question I used to ask myself occasionally – what is the best way to go?
I suppose I still could suddenly get run over but I am more certainly on the longer more protracted path toward death. Along with everyone else. My lens has been given more focus and I have been kicked into action to appreciate this fact and take advantage of it. And that is what I am doing. I am enjoying looking through those boxes of memorabilia I have hoarded. I will organise those photos, clear out that junk, write things to people I love that I might never have written and on top of this enjoy the massive wave of love and support I am getting from almost every direction. Family, friends, friends of friends, neighbours even strangers. We have lived in the same part of Brighton now for 20 years and I have visited the same shops, cafes, the kids have all gone to the local schools (Stanford Infant and Stanford Junior), Cardinal Newman and BHASVIC - all within walking distance and the local nursery Blueberry, which all 4 kids went to. In my time in Brighton I not only lived as a mother, hanging out in the local parks, playing on the beach, walking on the downs, I have shopped at the same shops for all this time, meeting and greeting the same local owners over many years. I have worked at the local council (as the local demographer and head of research and consultation many moons ago), with the local Primary Care Trust (when that existed – as a Non Executive Director); with the local maternity unit as Chair of the Maternity Services Liaison Committee; I have worked with the local schools as governor at Stanford Infants for 10 years and now as Vice Chair at Cardinal Newman. I even had a small column (called Figuratively Speaking) in the Argus. When I arrived in Brighton just after I got married I knew no one. But over these past 20 years I have built up such a wide network of friends and colleagues and acquaintances – people I have met so often in passing, in shops, on the way to school that I feel I know them. And this experience is reverberating in cancerispants. All these people across all the paths and networks I have built in my time in this city have woven a huge blanket of love and support around me – that daily, something happens that lifts my spirits. It is honestly almost impossible to feel sorry for yourself with this all around you.
Our local nursery Blueberry, held a pants on head day. Stanford Infants shared my story with parents. Stanford Junior held a cake sale and teachers, who for so many years I met about one child or other or at school performances and assemblies posted this picture for pant support. Cardinal Newman are cooking up a non uniform day to support cancer is pants and BHASVIC have donated use of their sports hall for the Zumbathon Fundraiser. Friends are organising marathons, a sponsored cycle ride from up North, a walk in the Downs with pants, a Pants Party and a garden party. (Thank you Jo, Andy, Harriet and Toby) The Lavender Rooms are having a collection on 16th May, our local newsagents, where William is a paper boy, are holding a raffle today with the prize of a Build a Bear bear, all dressed in pink with pink pants on her head. Friends of Ned’s held a cake sale and turned up at our house to hand over the amazing £89 they had raised (thank you Rifka and Kate). We are so close to reaching the £50K. With luck, exceeding it, so that I have war chest for any relapse when I am unlikely to have much time to make a decision about treatment.
In addition to this I receive flowers, meals, lovely messages of support, offers of help to improve my knitting technique and speed and more recently Rosen Treatment from a gorgeous friend who is helping me address that spiritual and emotional release, the strategy from Radical Remissions I have made least progress with. And every day my spirit grows and so does my determination. But also my acceptance. All of this is something so powerful and exposes the humanity around us in a concentrated way which I am not sure, even had I lived a long life, I would have ever felt so acutely.
Going back to my opening question – what is the best way to go? I did spend some of last week, clear that I appreciated the privileged of some time. And the fear I realise came from the reality for these 3 women. A death, that even within their own certainty of the inevitability of death, which was still too soon. Far too soon. And I imagined myself in a situation and realised time was closing in, and all I could think of are thing things I had not organised. Strangely like preparing for a baby – all that planning and preparation so you are ready to accept and manage the new life.
As the issue rolled around my head I experienced a couple of more ridiculous moments, watching films (most films these days have their fair share of death and these are frequently sudden and unexpected for the character, not for the audience). Every time I saw someone shot I found myself thinking, ‘well, at least I am not likely to die like that’; or an improbable disaster – where the character wakes up, a normal day to find themselves buried in mass of rubble from building destroyed by some missile or bomb, or a boat capsized in a the middle of the ocean in a tumultuous storm. In fact the devastation of the Nepal earthquake, a country I know and love where I have many friends bought the question of death in close focus. All those people who woke up that morning not knowing it would be their last day. All these deaths, real and fictitious confirmed that that the answer to my question is just that – I am fortunate for some warning and I will take advantage of that.