25. Lazy Days

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.

 clip_image002 Isis

Judy’s steward also created a healing mandala of stones around our picture when we were left in her room.

P1040097

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!

Mxx

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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 25. Lazy Days

  1. Dolores. says:

    Dear Margaret, you continue to amaze me with your determination to win through this ordeal and get your health back on form. You are an inspiration to us all. Having just got back from the USA I was shattered to find I had less than a week to unpack, get my sleeping patterns back to normal,repack, and print out 4 x34 rituals for the coming weekend workshop in Manchester…Little old ladies of 84 are usually watching daytime TV and knitting socks!! Not careering around the countryside teaching Magic !!

    But then I think of you and it gives me energy and strength to get up and go… Bless you dear.

    lots of love

    Dolores

    Like

  2. maria barry says:

    Long may this positivity last. That fighting spirit is the energy you need on this journey. Much love and healing to your whole family.

    Like

  3. Joe Tomsic says:

    Hi Margaret……really appreciate your writings. Thanks for responding to my email. You’re going to do very, very good with your treatments and bone marrow stem cell transplant. I was first diagnosed with the mantle cell lymphoma in April of 2010 and, as I mentioned in my email, had the bone marrow stem cell transplant in December of 2010. I’m doing great and you will, too. Unfortunately, and unlike you, I didn’t do anything special as far as diet in preparation for the transplant. Your preparations should enhance the entire process for you.
    I asked the doctors at Duke, after the “regular” chemo program in my hometown, to take me as low as they could…..and they did. If I could offer any advise it would be to try to eat during the four weeks of treatments prior to the procedure. I couldn’t and eventually told the nurses to stop bringing the food. Thank God for the IV food. The other thing is try or force yourself to walk….even if a little. Just walk the corridor with your IV stand. They’ll also tell you to go directly to the hospital if your temperature goes up. I tried to do exactly as they instructed in all respects. I have the most fantastic wife in the world and she was there every inch of the way doing everything for me. It was actually tougher on her than it was for me. As far as follow up treatment, I’m on an every other month Rituximab IV treatment. It takes about two hours and there are little to no side effects. Strictly maintenance and maybe something your doctors might recommend.
    I know almost exactly what you’ve been through todate and what your facing. You’re going to do really, really great and you’re going to be so proud of yourself. Your results will be even better than mine. The bone marrow stem cell transplant is going to do it for you. The most important part of all, however, will be the prayers you are, and will be, receiving.
    Guess what. I just received an invitation to the Duke survivors dinner. So there you go. By the way, you’re already an inspiration.
    Best wishes Margaret.

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    • Hi Joe,
      Thank you so much for your encouragement. I discovered a lot of information about the transplant procedure during this latest cycle, and I feel a lot more positive about the experience now. It is feels like a huge thing to be faced, especially after all the other chemo, but mainly because of the long stay in hospital; hearing from other people who have been through it make it all a lot more manageable, and I am now starting to see life on the other side of it. At least we should theoretically have ‘summer’ while it is going on and I should be able to sit outside on the patio next to the ward to read and relax. That can’t be a bad thing!
      Your Survivor’s Dinner’ sounds wonderful. Hope they do that here. Enjoy!
      Have a great weekend,
      Warmest wishes
      Margaret xx

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    • Hi Joe,
      I was just wondering how you are doing. I have turned my blogs into a book which will be out next year. Would it be OK to quote from your lovely emails? They were so uplifting and inspiring I would love to be able to include them.
      One year on, yay!
      Hope you are doing well,
      Warmest wishes
      Margaret

      Like

  4. alte frauen says:

    Hi! I realize this is somewhat off-topic however I had to ask.
    Does managing a well-established website like yours require a
    large amount of work? I’m completely new to operating a blog but I do write in my journal on a daily basis. I’d like
    to start a blog so I will be able to share my experience and feelings online.
    Please let me know if you have any recommendations or
    tips for brand new aspiring blog owners. Thankyou!

    Like

    • Hi there,
      I do check it a few times a dayto approve any comments posted and clear out the spam, but other than that, no effort at all. I write the blog in Word then copy and paste it into the New Post screen – it is much easier than typing it into WordPress. Hope that helps! Margaret

      Like

  5. Good post. I am facing a few of these issues as well..

    Like

  6. beast 123 says:

    I don’t usually comment but I gotta tell regards for the post on this one : D.

    Like

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