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

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About Margaret Cahill

After diagnosis of Mantle Cell Lymphoma in 2013, I started this blog to stay in touch with friends, family, and and an ever increasing network of lovely people who sent me healing. The readership increased and I ended up blogging for all I was worth to try and stay sane through the chemotherapy and stem cell transplant. Then after I went into remission (thankfully) I was enjoying the writing so much that I have carried on, and the blog seems to have become a bit of a resource for people, which is lovely. The original year of blogs have now been made into a book, Under Cover of Darkness: How I Blogged my Way Through Mantle Cell Lymphoma. It fills in a lot of the gaps between the blogs, and the tone falls somewhere between graveyard humour and explicit details of chemo treatments. I do hope you enjoy it :-) Mxx
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9 Responses to 29. An In-betweenie

  1. Lisa Gawtry says:

    What a strong lady you are Margaret and what an inspiration you are to so many people.i have read everyone of you blogs I have cried, laughed but most of all you have made me so proud that I know you and your part of our family love you lots always and forever xxx

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  2. Ronnie Smith says:

    What wonderful news. I am so pleased for you and if ever you want to chat you know you can always email me – I started my radiotherapy last tuesday along with my 3rd dose of chemo – I overdid it yesterday as we went to the Bath and West show – I was so exhausted last night and I felt so ill but on the whole it was a good day out and I managed to grab 40 winks in the car in the warm sunshine. I am feeling a lot better today as I had a really good night’s sleep. Keep us all informed of your progress and keep positive. Love and prayers, Ronnie xxxx

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  3. Sue Williams says:

    Margaret, I can only say that I sympathise – having had cancer has made me the biggest hypochondriac out! It’s been almost seven years for me now, but still with every new unexpected ‘symptom’ comes the darkest thought first. All you can do is to live the healthiest, most positive life you can (which, of course, is exactly what you are doing). My intuition is telling me so strongly that you will survive this.
    I am so looking forward to this coming out as a book!!
    xxxxxxx

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    • Hi Sue,
      Thank you so much for your encouragement and understanding. I knew this was going to be some kind of a journey which is why I started writing about it, but I really had no idea just how much it would develop and change me. I also have no idea how the book will turn out, but there is a lot more to go into it than I can fit on the blog, so it will be fun bringing it all together.
      Mxxx

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  4. Hi Margaret,
    I haven’t been going through what you’re going through, but in the past 3 years old age has dropped on me like a ton of bricks (I never thought to escape old age, but I had assumed it would creep up). So, I’ve been going through a lot of reorientation (for one thing, I am physically unable to do lots of stuff I could do before … you know, like f-ck); and I’m trying to sweep the decks, finish unfinished business (one book left to finish), close accounts and start anew (which will happen willy-nilly when I sell this land where I’ve been living for the past 37 years and move out of here – I have to sell because I can no longer walk in and out from the highway; and the tropical rainforest environment isn’t ideal for my emphysema).

    On the other hand, I feel lighter than I’ve ever felt before because everything’s kind of crashed around me, so I no longer have any responsibilities or major worries, and actually I’m happier than I’ve ever been in my life. Trying to enjoy every minute kind of thing (e.g. I’ve gotten more into cooking lately).

    This book you’re going to write is going to be a real liberation for you; and probably not the last book you write, either. The nice thing about being a writer is you can take the most horrific things that happen to you and turn them into literature (e.g. Viktor Frankl at Auschwitz).

    Vis a vis how friendly and concerned the hospital people are: that’s because usually they are Mutable Natural Disposition (the sort of people attracted to that sort of work usually have Mutable N.D.’s = caring, concerned, people-people); whereas you and I have Fixed Natural Dispositions (yours negative and mine positive), so we are more interested in ideas than relationships or intimacy. See Marc Edmund Jones on the Natural Disposition (the appendix of my pending book on aspects will have an essay on the N.D.).

    xoxo, Bob

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  5. maria barry says:

    I cannot wait to read your book Margaret xxx

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  6. I thought you might like to read my translation of Rumi’s Ode, Margaret.

    I agree with you wholeheartedly about the significance of suffering and the importance of acceptance.

    See if you like this!

    Lots of love
    Mario xx

    What can be done, O believers, as I no longer recognize myself?
    I’m neither a Christian nor a Jew, a Magian or a Moslem.

    I’m neither of the East nor West; of land or sea;
    I don’t belong to nature; nor to the stars in the sky.

    I’m not of the earth, or water, or air, or fire;
    I’m neither of Heaven, nor the dust from this carpet.

    I’m not from India, China, Bulgaria or Saqsin;
    Nor from the kingdom of Iraq, or Khorasan.

    I’m not from this world, or the next, from Paradise or Hell;
    I’m not of Adam’s seed, or Eve’s, from Eden or Rizwan.

    My place is placeless, my traces traceless;
    I’m neither body nor soul, as I belong to the soul of my Beloved.

    I have no need of duality, as I have seen two worlds as One.
    The One I seek; the One I know, the One I see, the One I call

    He is the first and the last, the outward and the inward,
    I know no other than He – there is only Him.

    Love’s cup intoxicates me as both worlds slip from my hands.
    My only business now is drinking and merrymaking.

    If once in my life I shared a moment without you,
    From that moment on I would repent of my own life.

    If once in this world I earned a moment with you,
    I’d trample both worlds in a triumphal dance.

    O Shams of Tabriz, I’m so drunk in this world – now
    Only stories of carousal and revelry pass my lips.

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    • Hi Mario,
      Thank you – I love this! Didn’t know you translated Rumi too amongst all your other many skills….I am a big fan and am collecting quotes and poems as I discover the ones that really mean something to me. Can I add this to my collection?
      Mxx

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      • Of course you can. I used it at the end of my book The Third Antichrist. I used my translation of an Ibn Al Arabi poem at the beginning. How can one possibly compete with those two topping and tailing you!!

        xx M

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