It really has been the most beautiful weekend. We decided not to book anything in the diary and to simply take each day as it came, lazy or not. Next week will be frantic, both from a work and chemo perspective, so it was nice to literally ‘take a moment’. I love the conversations that arise when we don’t have an agenda. When we have the luxury of sitting in the conservatory, and as the light fades, follow each thought to its uninterrupted conclusion. How often do we get the chance to do that?
Our thoughts have been turning increasingly to Life After Treatment as the end to this nightmare hopefully starts to edge into view. Every commitment, every routine, every dream was unceremoniously dumped when we got the cancer diagnosis; it is such a shock that one’s life is turned upside down, and any Grand Plans suddenly become inappropriate in the light of a newly re-arranged and treatment-based schedule. But now there is a strange feeling of being cast adrift at the end of this without a game plan, because we are very different people now from the ones who started out on this journey. It is like being turned, blinking, into bright sunshine after a long time in a dark room – one that I never planned on visiting, to be honest, as I’m sure nobody does. Even after four months, I still feel as if I was signed up to the wrong club by mistake, and that very soon someone is going to realise I am a fraud. I’m amazed it has lasted this long to be honest.
Stephen and I had a really interesting conversation about this last night, as the light faded and we watched the bats zipping back and forth across the lawn. Some would say I am/was in denial, and they may well be right, because I don’t think I have ever really emotionally engaged with this illness, and I have no desire to. Yes, I was shocked to my core, yes, I have felt truly awful (and will do again as I’m not finished yet), yes, in a way I am very frightened about the future, but I have always felt like an imposter on the cancer ward, and I wonder if this is one of the things that has helped me to keep going. People have said such lovely things about my strength and being an inspiration (all of which I find it really hard to relate to, but thank you!), but I am beginning to think that the way we cope with illness is programmed into our genes. I hate being ill and have always fought against it. I’m not being brave, I just wake up every morning with a head full of ideas, and sometimes get really cheesed off because I’m not well enough to carry them out. I am much too busy to be ill, and whilst I am very interested in what is going on in my head, the most important thing for me has always to get back into full working order as quickly as possible. And that doesn’t necessarily mean ‘doing’ something. What it does mean is that I don’t want to be distracted by being ill. I am equally happy sitting thinking thoughts to myself and pursuing an inner journey as I am editing the next book or packing boxes. This illness has proved very thought provoking and challenging; it has given me something to write about and has brought me unexpected gifts of friendship, love and support that are humbling and beyond my wildest dreams but I am bored now. I want my health back and I have a Lot Of Stuff To Do. And I am quite sure the cancer ward and Dot have a lot more people to be looking after.
Maybe I am just getting itchy feet. My mum would really laugh at that. I didn’t exactly have a reputation as a child for sticking with something to the end, and I haven’t changed in all these years. With Venus in Gemini the temptation is to skim over the surface of something, then shout ‘Next!’ So yes, I know how horrible and long Cycle 1 is, and I know how gruelling and horribly toxic Cycle 2 can be. I think the stem cell harvesting machine is totally brilliant and I kind of loved that day in a perverse way, but I have had enough now. And I also need to have a really good talk with my (lovely) consultant next week, because I am really troubled by the logic of the transplant situation. The week before the stem cell harvest I had a ‘purging’ session of chemo, which, as the word suggests, was supposed to drive every last cancer cell from my body so that the stem cells harvested would be squeaky clean and untarnished and suitable for transplanting back into my system at a later date. Now that implies, to me, that there was absolutely no chance of one single cancer cell being sucked into that machine. If there was, they would be re-infecting me and I am quite positive that isn’t part of the plan. I can understand that my consultant wants me to have Cycle 5 just to be absolutely sure, but what I DEFINITELY don’t understand is why I need to have the whole stem cell transplant scenario.
I’ll explain the procedure just so you can see where I am coming from here. In four weeks time I will go in for 5 days of extremely toxic and intensive chemo. I have already had very aggressive chemo, but this will be even more noxious and intensive – 5 long days of much more toxic treatment designed to kill off all of my bone marrow. Why? If it was good enough to provide eleven and a half million perfectly formed and untarnished stem cells, why do they want to kill it all off and take me virtually to the point of death? I really hate management speak but I have to say this doesn’t appear to be joined up thinking to me. If it is to any of you, please let me know. So, having taken me to the point of death I will be unceremoniously hauled back to the land of the living via daily injections of the stem cells that were extracted when I was – wait for it – healthy and cancer free. Eventually, after about another 3 weeks of foul hospital food I will supposedly bounce back to life with renewed vigour and be able to leave hospital. I’m joking about the bouncing back to life. This is a major, major procedure with risks like total kidney and heart failure, so you can understand why I am being extremely circumspect. And I have always had a problem with things I don’t understand – it started with maths when I was about 6 and followed through to Physics, Chemistry and Latin. Thankfully English has never been a problem J If I don’t understand something it really troubles me, and I have to say that the logic of all this is really troubling me. So I will be having words as soon as I can and will report back.
I am very aware that a huge part of my attitude and ability to cope with all this has come from the loving support of many friends – and in fact people I didn’t even know but who have taken me to their hearts and sent healing nonetheless. It has come in many forms: I am included on the healing lists of prayer groups and healing circles around the world. Dear friends have had pujas said for me in Indian temples and Greek monasteries, and I know I have been included in the healing rituals of many different religions and beliefs. The stories I have had back from some of these merit a whole blog of their own, and hopefully I will be relate these in due course. I’d like to take a few lines to tell you about one such experience which has been going on as a kind of ‘back story’. My dear friend and author Judy Hall had a holiday booked to Egypt which departed in early February, a couple of weeks after my first chemo treatment. Judy has been visiting Egypt for decades and she wanted to take a photo of Stephen and me with her so she could ask the gods for some healing for us. This also coincided with the arrival of the box of pink hats, so Judy came over to take a photo of us modelling them – and it was this photo which was taken around Egypt, literally. We were taken up the Nile and participated in many trips into temples, and tombs and were also presented to mummified crocodiles. Here we are safe in the wings of Isis.
Judy’s steward also created a healing mandala of stones around our picture when we were left in her room.
Stephen and I somehow became part of the whole journey made by Judy and her friends as our photo was taken from one sacred site to the next. My healing became a sub-text of their holiday. I can’t even begin to do this justice so you need to go to Judy’s website http://www.judyhall.co.uk and download the pdf account of her time in Egypt which describes in detail the sites she visited and the history and mythology behind them. I just feel incredibly lucky to have been included on such an amazing journey and to have been in the presence of such powerful entities; I know their influence and healing continue.
A busy old week now so I will be in touch when I can. Blood tests and the doctor tomorrow then that lovely long 12 hour day hooked up to the chemo on Wednesday.
Enjoy your week!