29. An In-betweenie

 

‎My heart is so small
it’s almost invisible.
How can You place
such big sorrows in it?
“Look,” He answered,
“your eyes are even smaller,
yet they behold the world.”

Rumi

 

It is strange being an in-betweenie. For the last five months of my life there has been a regular rhythm to the treatment cycles: chemo, crawl back to health, recovery of bounciness, next cycle. I was in Ward 10 on Thursday for the usual blood tests and chat with the house doctor (one of my favourites) and she didn’t even wait for the results of the blood tests – and that has happened twice now. Looking at the results of last week’s she said I looked fine and that I was free to go until next Monday when I see my (wonderful) consultant for the pre-stem cell transplant appointment, and after that I will be free for a further week until the chemo and transplant itself. I did a little jump for joy then wandered out into the dreary drizzle of our British Spring. The jump for joy was quickly followed by the realisation that I have become quite institutionalised since January. I have all my bits of paper sorted out now, I know all the staff by name and they know me, they even know when I am next in and what for, which is all a bit spooky – how does that work? They all asked if my head was better (see last post) which was kind of sweet, but a little disconcerting. I find it hard to recognise faces and remember names – although I am very good with voices on the phone – but they seem to know everyone and remember everything about them. I guess it comes with the territory. All of this brought me to thinking how strange it will be when I get to the end of the chemo and am free to roam the world again. Actually it is quite scary. And where do I fit in? Although I still think I signed up to the wrong club by mistake, I have become used to telling people I have cancer and trotting out all the gory details on request. The treatment schedule and hospital visits have completely taken over our lives and hopefully, after July, a sense of freedom will return, but we are very different people now. After the transplant I should definitely be in remission. I think I will have a PET scan to confirm it, but my head and heart are going to take a long time to catch up. So will my hair. And so will my stamina, which could take up to a year to get back to normal levels, if it does at all.

What I have come to realise is that you can’t go through an experience like this, get the (hopefully) all clear, then bounce back to life as if nothing happened – and this thought has been weighing very heavily on my mind in the last few days. I think this is where Stephen and I really get to grips with the whole concept of ‘living with cancer’ as we maybe haven’t before. Assuming everything goes to plan with the transplant, I will return for fewer and fewer visits to the hospital until I am only poking my nose in there every six months or so. Or maybe even yearly. That would be nice. But how do we cope, in that quiet gap between the visits, with the possibility that the dark invader has returned? I can hear you shouting “You can’t think like that!” and you are probably right. But it is very hard to stop those thoughts and also to know how to approach my life now. I have to say I am writing after three very powerful eclipses, which in astrological terms have given my chart a good beating, so this introspection is not a surprise. I can now understand the deeper meaning of the phrase ‘cancer survivor’. I used to think, “Wow, well done you! Through it and out the other side, and long may your healthy life continue”, but I now see it is because, initially, people like me need somewhere to place ourselves, even if it is only for our own benefit. It is so similar to grief. People were lovely to me after my parents died, but after a few weeks most of them went back to normal. I, on the other hand, was only just beginning the process of grieving and probably needed more support than ever before; likewise with cancer. Going through the treatment has been a psychological and spiritual struggle just as much as it has been a physical one, and I have had masses of support to help me through it. Life after the chemo will be different and it will no doubt bring struggles of a different kind – the thought of it already is. My hair will grow back and hopefully my normal level of fitness will return, but my life will never be the same again, and the last few days have been filled with a lot of sadness at that realisation – there will always be fear, at the slightest twinge, that the cancer is back. And I am finding that really hard to cope with.

I had a long conversation with my dear Swamiji, who can always be relied on to tell it like it is. She comes out with the harshest truths in such a lovely, loving voice; the words explode in your heart then the tears come, then you realise just how right she is. I have threatened to publish a book of her wisdom and fully intend to carry it out so that everyone can share the tears and the torment it causes. :-)

Because that’s what the spiritual path is. It wasn’t something I deliberately chose, but it appears to be something I have been following for some decades and it gets extremely tough at times. Swamiji said that suffering is life’s way of keeping us alert to our path. If everything was easy, our souls would go to sleep and there would be no progress. I personally find that option incredibly attractive just now. As Rumi said, in a lighter quote, “Listen; there’s a hell of a good universe next door: let’s go!” If there was a bus leaving now, I would be first in that queue. As I can’t see the bus stop just yet, I find myself remembering something I said at the beginning of all this: that I couldn’t control the outcome of any of this, but the one thing I can control is my attitude. It feltlike hard work then and it feels like hard work now, but I also believe that out of all the hard work will come reward. Swamiji also talked about how suffering stimulates creativity. We are forced to dig deep and find ways of coping, and for me (who in the past has felt as creative as a brick), it has taken the form of writing this blog. I have often been asked, as a publisher, when I would be writing my own book, and I have always said that I am much better at working with other people to bring their words into print. I never felt I had anything to say before, but now I do. I have always believed that when you are brave enough to bring worries into the light they become easier to deal with, and I am fortunate in having some wonderful people who encourage me to do so and who are stable enough to support me through the process. Although writing this blog is a bit like washing your dirty linen in public, it seems to be finding its niche. I have been told that some people are finding it helpful and that it encourages conversations with loved ones that wouldn’t otherwise have taken place. Splendid. In the cheeriest and most positive way possible, I am delighted that I can continue to inflict you with my woes. :-)

As a great fan of Rumi, let’s finish with another of his gems:

Sit, be still, and listen
because you’re drunk
and we’re at
the edge of the roof

Enjoy your weekend!

Margaret xxx