6. Life at Home

First this from the Sufi poet Kabir:

The way of love is not

A subtle argument.

The door there is devastation.

Birds make great sky-circles of their freedom.

How do they learn it?

They fall, and falling,

They’re given wings.

With thanks to Brandon Bays, who quotes it in her lovely book ‘The Journey’                   see Book Blog for info.

My dearest Swamiji, in a beautiful email I took into hospital with me, told me that I had been pushed off the cliff rather than being allowed to fall gently – which probably comes from pigheadedly continuing on my own sweet way and not listening to the signs I was being given that Things Had To Change. The flying analogy has been cropping up in my life for a while now. Some years ago I had the fancy of writing a book – I had the title but no actual content (pretty typical me, then). The title? Flying Without Wings. Within the Wessex Astrologer list I wanted to start another imprint for non-astrological books. The name ended up as Flying Horse Books. The idea of soaring with the eagles, reaching for the stars and falling to the Moon and so on has appealed ever since I was first aware of it. I remember my brother telling me as a child (obviously quoting from somewhere or other!), “..and some day Thomas, a man shall land on the Moon”, a long time before the supposed Moon landing. No doubt he will tell me where it came from when he reads this!

I now have the chance to fly. Mine and Stephen’s lives have changed completely and we have the chance to start anew. Old patterns created a situation in my body where cells turned cancerous, so, as I read in someone’s blog the other day, that is a room I cannot revisit. Things Do Indeed Have To Change. It’s really odd when you come back home from hospital. My only experience of any note has been to do with babies. You get the carry-tot seat holding your precious cargo back home, dump it in the middle of the floor because you are too scared to put it on the table – might fall off ?!! – then after a few minutes the sheer weight of responsibility falls with a massive ‘thunk!’ on your shoulders. It was a bit like that on Saturday, only it was the responsibility of getting me well that fell on my shoulders, and making sure that Stephen survived the process too.

I think it is easy for the caregivers to be left out of this whole process. It has been very difficult to have all the attention directed at me so far, not only because I still don’t really believe I’m ill and I hate being in the limelight, but also because I am so concerned about how Stephen is coping with it. He has been working to a magazine deadline whilst supporting me through all the initial hospital appointments, organising hospital visits, bringing me nutritious food to make up for the utter gunk I have been given, holding me when I have needed to cry – and dealing with the extreme and raw grief of knowing I have cancer.  I think I have probably said quite a lot so far about feeling blessed and touched by the amount of support we are being given. What is so lovely is that Stephen has very obviously been included in those prayers too. That is so important and once again I thank you all. It is a path we are exploring together; the days I feel well I want to be able to offer any support that he needs and that I would quite naturally have given before – and for us to have fun together. He is not to be my nurse maid. Try telling that to a Virgo!

So we now enter a new room. What are we putting in there? Well, a lot of that hand cleaning gel that is being advertised, for a start. It is possible, nay, likely, that my white cell count will go down very low in the next few days and I will be very open to infection. According to the MacMillan nurse people are far more likely to be infected by their own germs than those of others – barring shoppers sneezing all over you of course – which includes touching your hair, face, nose, feet, the telephone, computer keyboard. All the things around your home that you use frequently. You can imagine with Stephen’s Virgo Sun and my Virgo Moon, we are having a field day! And we have two cats. I did clear touching the cats and drinking the odd glass of wine with the nurse and I’m delighted to report that both were OK – especially the cats. I’m joking of course. Especially the wine was OK as she is obviously a woman after my own heart. It becomes a whole new way of living in your own home. It wouldn’t be good for me to use the hand towels that the rest of the family use, so I have kitchen towels by the sink. This is nuts. I accidentally scrape my hair out of my eyes, wash my hands, wipe them by mistake on the towel, wash them again, use a kitchen towel. Cat walks by, want to stroke cat as it is good therapy, wash hands, remember to use kitchen towel, wipe hair out of eyes because bending down to cat has made it all fall in my face, wash hands AAAARGH!!! I’m becoming Howard Hughes! I collapse onto the sofa, accidentally move the cat blanket, get up, wash hands…..no, I’m being silly now, but you can see we have to get used to this new idea of living in our own home in a way that protects me.

Protection also of course includes looking at food and supplements. My aim is to try and keep my blood cell count up so I stay fit and am in the best possible condition for cycle 2. The chemotherapy destroys good cells as well as bad, and as the cells in the mouth replicate fastest these are the ones that get hit first. Thrush (which has already started) and ulcers are likely to be a great discomfort so I am taking Aloe Vera gel and vitamin A drops to help. I am using linseed tea to lubricate the whole digestive tract which dries up from the mouth all the way down to the exit point, with very unpleasant consequences. The afore-mentioned pomegranate juice is  an excellent source of anti-oxidant (and absolutely gorgeous with a bit of chilled water), which along with vitamin D and Echinacea will help to rebuild my immune system. Then there is the vast amount of juicing we are doing. You can see why I won’t have time to work….Fortunately Stephen is joining in with this nutritional programme as otherwise he wouldn’t have the strength to keep up with me :-)

We have always been careful about the type of food we buy. I read a while ago that ordinary non-organic veg contains more organophosphates than the legal limit even after it has been thoroughly washed, so quite apart from the fact that it has been grown in exhausted soil which has to be supplemented with fertilizers, we figured that organic has to be best. We have a bit more flexibility in the budget now the wine bill has dropped somewhat, so we are diverting that into the food fund. I don’t get along with a vegetarian diet (apparently the Dalai Lama doesn’t either so I’m in good company) so we will be continuing to eat some meat. Grass fed animals and fish that are caught from the sea as opposed to farmed will at least have escaped GM grain and antibiotic supplements in their diets. Once you get into all this in any depth it is almost too horrible to contemplate how our food has been messed around with.

Diagnosis of Mantle Cell lymphoma is apparently increasing at the rate of 4% a year and thus it is likely to become the focus of future research. It is estimated it will become the cancer of the younger generation who are all currently filling their faces with poor quality food, and it is directly related to toxicity. I can at least try to make sure that for me and the people I love, there is good, nutritious food available to feed our souls and nourish our bodies. A bit sad about the chocolate though. I’m not a chocoholic but the odd bit is nice. Tried some tonight and the texture was horrible. This is starting to get serious!

Good night!

Margaret xx


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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7 Responses to 6. Life at Home

  1. Sue J says:

    Hello Margaret
    No doubt there is more to catch up on, beyond this one – I’ll go backwards and read that, next, but although it is probably poor taste to say so (Oh when did I ever let that stop me!) this was gripping stuff. I feel absolutely that I have been let in to your inner most self, a self that is original, wise – again probably inappropriate to say so, because that’s not the issue here – talented.., and a self that is flying me too, on the back of your.. Truth.
    Honesty – correct, worthy, unilluminated and pedestrian, doesn’t have the Universal element. Shared Truths are what we get from memorable poems, and what you are giving us here.
    If this were transmitted on my car radio – Woman’s hour? – at the first opportunity, I would park, turn off the engine, and listen.,
    But now I should be in bed and with any luck you will be reading this after a good night’s sleep
    Love to you both
    Sue xxxx


  2. Thank you so much for your kind comments Sue – I am deeply flattered. I am really just speaking from the heart. I find that issues arise during the day and I can use the blog to explore them. Writing is so cathartic and I have been longing to write for a long time. Didn’t quite expect to be writing about this sort of thing though – just shows that you have to be careful what you wish for!
    Warm wishes, Margaret x x


  3. Thought you’d be amused by this. I went to the Royal Marsden, Sutton, today, for their ten10 celebration (£100 million raised in ten years). They gave me a personal tour around the new Oak Centre for children and young people and also the Centre for Molecular Pathology (and didn’t once suggest I lie down for a quick PET scan). Along the way, one of my guides (a rather awesome chemist) characterised cancer cells as ‘addicts’ who gorge on what we are trying to kill them with and crave more of it. I don’t know why, but this image delighted me. It’s a comfort, in some strange way, to know that one is infested by ‘addicts’. Oh dear. Perhaps I am losing it. I also met Jermain Defoe (whose father has just died of cancer) and asked for his autograph for a friend of mine. I am 59 years old. So is my friend. What was I thinking of? Life becomes stranger by the minute. I don’t even know which team he plays for (I do now). Thinking of you both. xx Mario


  4. Sue Williams says:

    You are so inspiring. I am sending you a big hug…I know some of what you are going through, and it’s really, really tough. It makes you re-evaluate your place in the universe.
    Lots and lots of love and prayers.


    • Hi Sue, thank you so much for this. I guess I just carry on doing what I can each day…and maybe taking some people along with me makes it easier for all of us. Or as Dory says so beautifully in “Finding Nemo”, “Just keep swimming, just keep swimming.” I love that film! Be well, Margaret x


  5. Ronnie Smithj says:

    Hello Margaret this is Ronnie (and Bill) from dancing on a Monday – I too have just been diagnosed with cancer of the gullet and I will be treated with cemo and radiotherapy – not started the treatment yet but will follow your blog so as to know what to expect – you are a lovely lady and I will pray for you. We can beat this thing come what may – take care and I am now going to read your blog


    • Hi Ronnie,
      Thank you so much for your lovely message, and I wish you well in your treatment. I think the hardest thing at the beginning is the shock of the diagnosis. Once the machinery of treatment gets underway it all becomes a lot more workmanlike and do-able as the staff are amazing, but there will be down days, as you will see from the blog. We are learning to take each day as it comes as each one is different – some days i am absolutely fine and others i’m not, and other people just have to learn to fit in with it. I have lymphoma which is fortunately just in my tonsils, but as it is an aggressive form I am having intense chemo -and as it is a disease of the blood I won’t be treated with radiotherapy. I am sure you are in good hands and will do well. Some of the best advice I had was to stay strong and listen to your body. You will be given a lot of drugs to take after the chemo, and if any of them feel wrong remember you can always ask about them and see whether you really have to take them or whether ther is an alternative. There are also a lot of supplements you can take to help yourself. If there is anything I can do to help, let me know….
      Warmest wishes
      Margaret xx


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