Adaptations

Seven weeks ago, my life followed a predictable if hectic pattern: up at 6am for a fight with the boys over the bathroom, serving up breakfasts and instructions (get dressed/brush your teeth/hair) before leaving my partner to sort out the mess as I dashed for a train to London. Once in London, there was lots more dashing to do: back to back meetings in different parts of the city, hundreds of emails, texts and booked calls before dashing back to Birmingham, arriving home around 8 or 9pm for a quick chat with the boys (have you done your homework?) and my partner (did you pick up my dry cleaning?) After much shouting and begging, on a ‘good’ day, the boys would be in bed (or at least in their bedrooms) by 10pm, when I would sit at the kitchen table to work on my MS whilst eating supper, before going to bed at midnight, wired and braced to dash away again in just six hours time. Round and round we went like a high-speed record player, until seven weeks ago, my partner was diagnosed with lung cancer and everything stopped.

I wrote about that dreadful day in an earlier post https://johoganwrites.wordpress.com/2016/10/08/the-cough/ and for a couple of weeks after the diagnosis, it was like living with a needle stuck at the end of the record, the once booming sound track to our lives reduced to a dull and ominous clicking. But gradually things have started to move again, albeit at a different pace. The day we got the diagnosis, I stood down from my London job and was fortunate enough to be offered a less demanding and largely home-based project by my understanding employer. Instead of being focussed on my career, I now fit my work in around my role as a carer for my partner and children, with deadlines determined by medicine schedules, temperature checks, meals and rest times. Everything – everything – depends upon how well or poorly my partner feels.

Once every three weeks, my partner has to spend an entire day having powerful chemicals administered into his veins in an attempt to stop the relentless division of cancer cells. He has just had his second cycle of chemotherapy and we are learning that this makes him feel extremely tired and grotty for the first 5-7 days, despite the copious amounts of medicines to be administered before/with/after food to combat nausea, indigestion, constipation, diarrhoea and vitamin deficiencies. The following week, his chemotherapy symptoms start to improve as the toxins pass through his body but half way through the cycle is also the point when he is most vulnerable to infection. Chemotherapy destroys all of your cells – the good and the bad. So we take his temperature three times a day because if it reaches 38 he is at risk of a life-threatening infection and is required to go to hospital within the hour. The third week is perhaps the best but also the most nerve wracking because that’s when he has more blood tests to check that his cell count is high enough to withstand the next cycle of chemotherapy. If not, then we have to wait at least another week until they are – another week when the cancer cells might be dividing unchecked.

I have written before about our fears https://johoganwrites.wordpress.com/2016/10/15/firsts-and-lasts/

but this week we have more hope. At the time of his diagnosis, my partner could not do simple things like get dressed or go to the bathroom without provoking terrible coughing episodes that left him breathless, exhausted and frightened. Unable to walk more than a hundred yards, our lives rapidly narrowed and things seemed very bleak indeed. Since his second dose of chemotherapy, the cough has greatly reduced and he can walk further and longer (although we still measure in yards, where once we used to count the miles on our long-distance walks together). We won’t know whether the chemotherapy is ‘really’ working until we get the results of a scan in a couple of weeks’ time, but right now, we have hope.

Meanwhile, we are adapting our life and home. We are making the bathroom more accessible and reorganising our (limited) living space to take the stress out of everyday tasks. I have painted my first room, drilled and undrilled my first screws and even built a bookcase. More importantly, I have stopped ‘dashing’ off and started making time for my family. I am here when the boys arrive home from school, so whilst their dad rests I can talk to them about their day, cook their dinner and help them with their homework. Instead of just telling my fifteen-year-old to be more organised, I have helped him to sort his GCSE notes into folders and created a dedicated space for his revision. Instead of arriving home late, hungry and irritated by the apparent domestic chaos, I now appreciate all the time-consuming, thankless but necessary tasks that my partner used to do (although I draw the line at ironing and shoe polishing).

But beneath all the change, some things remain constant. We still argue about bedtimes, homework and PE Kits but with our new sense of perspective, these exchanges evaporate rather than escalate. My partner and I now have real conversations rather than just swapping information. Fear has blown away the clutter of a twenty-six-year relationship, exposing once more the roots of our love. We are kinder to each other. Softer. Truer. (Although we still disagree about the necessity of ironing).

Everyone has been so unbearably kind. Family, friends and colleagues have inundated us with offers of help and sympathy, as you might expect. But we have been taken aback by the kindness of strangers: taxi drivers and workmen can see how sick my partner is and treat us with gentle and discreet care. The countless messages I have received via twitter and this blog offering support, cakes, kind thoughts and personal stories from people I have never met has been truly uplifting. And some days, we really do need lifting up.

Our lives have changed so much over the past seven weeks and there are more changes to come over the next seven. There is a new bathroom to fit and furniture to buy and rearrange – not just to accommodate the disabling effects of cancer but to make more space for love and kindness. We also have our son’s sixteenth birthday to celebrate and Christmas will be followed by my partner’s fifty-seventh birthday.

But important though these milestones are, the key dates on our calendar are now the third and fourth cycles of chemotherapy. These life-saving chemicals and their toxic side effects will determine not just how we live for the next few weeks but for the rest of our lives.

 

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10 thoughts on “Adaptations

  1. It’s so tough. You’re absolutely right about the almost supernatural force of love people unleash upon such illness, and I do believe – without any religious leanings or faith whatsoever – that such a primal, instinctive force HAS to be as important as the incredible destroying/saving chemistry we endure.

    Something that you may not be prepared for: The Pity Face. Kind of dictates a conversation, or your notion of how you’re perceived. There are far worse things, for sure, and people can’t help it, but – brace yourself.

    Thanks for writing – and connecting. S

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    1. Thanks Sophie for reading and commenting. And oh God yes, The Pity Face. I am already avoiding it. I know people mean well but I can’t bear it so at work everyone knows not to mention it. It sounds like you have experience of this, but I hope all is well with you now. Thanks again and all the best jo x

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  2. i somehow missed all this until just now, i’m so sorry, jo. went back and read the others, i don’t know how you write so beautifully when your heart is breaking but you do. sending all the love and hope xxxxx

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  3. Unsure how I came across your blog but feel such empathy for your life right now. My husband and I have been through more of less the same three years ago, different cancer, younger kids but the busy life, the rounds of chemo and radio, the kids and the pity face sounds familiar. Sending you positive vibes and hope, I remember someone telling me that I was the glue that held our family together – it’s a tough job keeping it all together but an even tougher job to fight cancer. Big love x

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    1. Thanks for this Sophie and I am so sorry you have been through something similar. I am hoping that you and your family are in a better place now? And yes I agree – so many people keep asking how I am and wanting to look after me etc. and I feel I need to remind them that I am not the ill one! It is hard to care for someone, but as you say, even harder to be the ill one. Thanks again for reading and sharing yours story and here’s to healthy futures jo xxx

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  4. Such beautiful writing Jo… I marvel at the wonderful way you capture such awful circumstances and feel inspired by your determination…AND your observations:

    My partner and I now have real conversations rather than just swapping information. Fear has blown away the clutter of a twenty-six-year relationship, exposing once more the roots of our love. We are kinder to each other. Softer. Truer. (Although we still disagree about the necessity of ironing).

    THIS is just, well just so lovely! Still sending positive vibes xxx

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    1. Aah, thanks Poppy that is so nice of you to say so. It is interesting as I nearly didn’t post this as I didn’t really think I was saying anything compared to the other two. And thank you for your kind thoughts as ever. All the best Joxxx

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