8. Magic Roundabout

I feel duty bound to let you know how things are today, lest you think that so far this has all been exciting hospital visits filled with side-splitting encounters with Dot and the WRVS lady. Make no mistake, today is Horrible. I think a little bit of background is needed here, as to be fair, and somewhat surprisingly, I don’t think the chemo is completely to blame. Yes, it has completely toxified my system and definitely debilitated me, but that is what it is supposed to do: as Swamiji said, it is supposed to take my cells to the very point of death so that like the Phoenix rising from the ashes, my cells can regrow in a more perfect form ready to be zapped by the next lot of chemo. Lovely, I know, but that is how it is, and how it is supposed to be, so I’m not moaning about that.

When I went for the blood tests on Wednesday I mentioned that I felt very fluey and my ears and throat were very sore. Knowing that I need to be as fit and well as possible for the next chemo cycle on 7th February, I wasn’t surprised when they prescribed antibiotics. I would normally avoid antibiotics like the plague but my usual measures haven’t been working for some months so I thought this would be a good idea. It was a good idea from the point of view of my throat, but taking 500mg of Amoxycillin is never going to help one’s intestinal flora – of which there is precious little left after the chemo anyway. Two days of extreme sickness et al followed, so I cut it back by half. First day was better, then yesterday and last night was horrible. But my throat is nearly better (from being sore, obviously not the cancer yet) and that is the bigger picture so I thought I should be able to cope with a little sickness.

I realise the picture is becoming complicated and a bit darker than my usual blogs but you are here for the good and the bad, right? I have had a problem with an irregular heartbeat for quite a few years now and although I know it isn’t going to kill me, it is  incredibly unpleasant when it kicks off as it often lasts for about 36 hours and is completely debilitating. It did so when I was in hospital ready to start chemotherapy, so suddenly all the bedside manner changed from arranging drips and signing consent forms to a lady wiring me up with an ECG trace and the chemo was halted until they had a decision on my heart. I found out a while ago that someone who had a similar problem to me had had an ablation. The electrical circuit of the heart can be upset by cells in one part misfiring and by cauterising those few cells regular heartbeat can be permanently restored. “Wow, what a brilliant idea,” I thought. I’d love one of those. Fast forward back to lovely Ward 11, drips poised. I kicked my heels for the whole day waiting to see the cardiologist who, very sweetly, was coming after his clinic. That day was quite fun though as a succession of student nurses tried to complete their regular ‘obs’ which are blood pressure, oxygen levels and temperature. One of the problems with the irregular heartbeat is that you can’t get a true BP reading and of course the heart rate on the oxygen monitor is all over the shop.  The NHS is a fabulous institution and has proved itself to be incredible for me, but they don’t do a lot of communicating with each other. Student fails to get heart rate, panics after trying both arms, I make sick vampire jokes about bloodletting through my lines and having no heartbeat, student dashes off to get senior person, who hasn’t seen the doctor who has ordered the ECG trace. She also can’t get BP so she goes to find the other duty doctor who is really lovely but hasn’t spoken to the other doctor either so he orders ECG to see what is going on. I say (not for the first time I promise you) that I have already had the trace and I’m waiting to see the cardiologist Later That Same Day. Back down to Defcon 1 and everybody breathes again. Until the next obs check with a new student nurse. Oh no. It did make the time pass quickly though and I got a lot of fun and a lot of mileage out of the vampire scenario.

Will Carling look-alike cardiologist arrives about 5.30. Jolly nice guy, says I have an atrial flutter that won’t kill me (that’s a relief, just got to beat the cancer then!), and that what I really need is an ablation, but, he looks deep into my eyes and says “I think you know where I am going with this…” Yep, too right I thought. I would absolutely love a hot wire poked into my heart right now as it is jumping away like a freestyle bungee jumper, but possibly the very aggressive cancer still racing around my system as I haven’t started chemo yet is a tiddly bit more important right now. So we mutually agree to try to zap it with a different drug from the one I’m currently on which clearly isn’t working. We negotiate the dosage (I lose) and all is set for chemo and a different tablet for my heart the next day. In the event it calmed down as it usually does after a while so of course they were delighted that the tablet worked. It so didn’t. So – anyway, I can have an ablation when I get through 5 months of chemo and a stem cell transplant. Yay! Be careful what you wish for, I say!

Coming slap up to date I woke up this morning with my heart exploding out of my chest. Yes, the drugs don’t work. Apparently the Vegas nerve, apart from being responsible for regulating the heart rhythm also regulates the amount of acid in the stomach. Whenever I get the heart problem I also feel really sick from the extra acid that gets released and dizzy because in beating irregularly you get long episodes of several seconds when there is no heartbeat. Bet you wonder how I ever get any work done :-) Oh joy. So I don’t know whether the heart problem on top of the antibiotic reaction on top of the 6 tablets I have to take every day (plus the injection to boost cell growth) on top of the chemo is making it all extra bad but I do know that is it now 3.15 and the only way I can stay upright is by remaining seated and it is getting incredibly boring. As soon as I move it all goes fuzzy and I feel horribly sick. Which is why I decided the moment had come to share with you as at least it makes me laugh a bit while I am writing. The lovely people on Ward 11 said to call them with ANY worry whatsoever, but if I do so I will be on the Ward and wired up before you know it and I DO NOT WANT MORE DRUGS! Not just yet, anyway. I am dutifully following my yoga breathing and have been clutching rose quartz, speaking gently to my heart and swallowing a lot of chamomile tea. None of which has really made a difference in the past as my heart seems to return to its own rhythm when it is good and ready and not a moment before. But I have to say I am sneaking the ablation threat into my meditations. I’m only human, and you can only be so nice and so calm for so long. When it feels this bad, having a general anaesthetic so I can have a burning wire plunged into my heart seems an incredibly attractive option.

So that is it, you are free to go. I am in excellent hands here as Stephen is looking after me as only a Virgo can and my every need is catered for. Oh yes. Why did I call it Magic Roundabout? Because although I feel I am going in circles and it will be a very long time before I get better, I will indeed get better. And that is pure Magic.

Happy Sunday

Margaret xx

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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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12 Responses to 8. Magic Roundabout

  1. Darrelyn Gunzburg says:

    O Boy!! Talk about HARD. But thank you for keeping us informed of what HARD actually means with cancer. Feel for you!!!!!!!! Sending love to you both…. Dx

    Like

  2. Natalia Chuter says:

    Sending you loads of love and massive hugs!!! You are truly wonderful and so brave. Your blog is amazing, very interesting and brilliantly funny! Missing you loads and sending all our love to you, Stephen and the boys xxxxxxxxxx

    Like

  3. John and June Peacock says:

    Hi Margaret,

    We’ve been reading your inspiring posts. Our thoughts, love and best wishes to you and your family

    John and June Peacock

    Like

  4. rose says:

    oh no, and i was thinking no news is good news, youve really had a bad few days(ok loads) i hope your hearts behaving now, it must feel like such an uphill struggle for you. But your handling it!! On top of everything your writing is brilliant, well done keep fighting xxx

    Like

  5. Judy says:

    Hi Margaret

    I know you find Rumi illuminating and I thought this pretty much summed up where you were right now:

    “The breeze at dawn has secrets to tell you. Don’t go back to sleep.
    You must ask for what you really want. Don’t go back to sleep.
    People are going back and forth across the doorsill where the two worlds touch.
    The door is round and open. Don’t go back to sleep.” -Rumi

    Continue to be inspired and inspiring, amazing woman!
    Heal well.
    Big hugs
    xxJ

    Like

  6. Judy says:

    Hi Margaret

    I know you find Rumi illuminating and I thought this pretty much summed up where you were right now:

    “The breeze at dawn has secrets to tell you. Don’t go back to sleep.
    You must ask for what you really want. Don’t go back to sleep.
    People are going back and forth across the doorsill where the two worlds touch.
    The door is round and open. Don’t go back to sleep.” -Rumi

    Continue to be be inspired and inspiring!
    xxJ

    Like

  7. Stephanie says:

    Hi Margaret

    Well I have now caught up with you! and read all your blogs in one sitting. They make riveting reading. I think you’re doing absolutely the right thing with your Neptune transit by writing this blog about what you’re going through (in painstaking Virgoan detail!) and sharing it with us all. That way none of it will be in vain, we will all benefit from it.

    Sending you love, light and healing.

    Stephanie
    xx

    Like

  8. Dolores. says:

    Dear Margaret,Stephanie just told me what has been happening to you, I have put your name on the SOL Healing list and we will put our ALL into getting you through this. I’m sure you are going through up days and down days but know that you are surrounded with love and good wishes.
    Chemo is no joyride, I have had friends who have gone through this. but they all say keeping a sense of humour helps.. though its hard to find it sometimes. We are all here to help you get through the bad days and share the good ones. much love dear

    Dolores

    Like

    • Hi Dolores,
      I can’t begin to tell you how much your support means to us. Stephen and I feel blessed indeed that we have the love and support of people all over the world. As you so rightly say, there are good days and bad days. On the good days we rejoice in the life we have and that we have each day together. On the bad days we are grateful that we have wonderful people sending us such strength. Big hugs, Margaret x x

      Like

  9. Caron Rogers says:

    Crikey, you couldn’t even begin to make this up! Can’t believe you’re retaining a sense of humour, I’m so impressed Cx

    Like

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