Thursday, March 3, 2016

12 things to do for a cancer patient

I thought it might be useful to set out my (very personal) thoughts about what one can do to help a person with an illness like cancer.   So much is written about what you can't and shouldn't do (including by me) that it is necessary just occasionally to focus on the positive (and easy) steps one can take.
 
When I was diagnosed with cancer, my life, which had previously been busy and outwardly focussed, was transformed overnight to a tiny dark world.  My new life could be depicted like a stripped down pictogram,  with coloured lines for the car trips connecting the key focus points - hospital rooms, the chemo ward, appointments with various medical professionals and my bedroom.  My family and friends, pale and stunned, all had different ways of responding to my diagnosis. 
They all knew that like any traumatic event, cancer is an intensely isolating and lonely experience.  

This list is intended to help bridge the isolation gap and provide some positive ideas about what to say or do when you have a friend, co-worker or family member facing a cancer diagnosis.




1                       Offer specific stuff. Or even better, don't offer, just do.
We all say at times of distress 'please just let me know if there is anything I can do'.    I found it difficult to respond honestly to this question.   My usual surface answer was 'Yes of course I will, but there is nothing which needs doing at the moment, it's all under control.' 
The honest answer would have sounded more like 'You know what I would really love is for someone to give the garden a good weed.   Or clean the toilets properly.  And my oven - it really is filthy.  Do you think you could fix that for me?'  
Because strangely, the little things which one should just let go when being treated for cancer were, to me at least, even more annoying than they otherwise would be.   I spent so much time at home during treatment that the state of the house became a real (but I acknowledge, out of proportion) concern to me. 
So, if you want to provide practical much appreciated help, book a cleaning service for a few hours and let me know when the cleaners will be arriving.   Or send around some home cooked lasagne for me to feed the children.    Much as my children loved the million serves of 2 Minute Noodles I dished up during chemo, I think even they would have appreciated something a bit more nutritious from time to time.

2                           Keep it simple.
If you speak from the heart and keep it simple it is difficult to go wrong.   Don't overcomplicate things for fear of saying the 'wrong thing'.  Cancer is complicated enough.   It was often the unembroidered statements which helped me the most:   

I am sorry.  

This is just awful. 

I am here for you.

I am sorry you are going through this.

 I love you. 

For me, the mere knowledge of your friendship and love was enough.  It is not your words which heal me, but your articulation of a basic human response:  I am sad about this horrible thing which is happening to you. 
In a similar vein, if you don't know what to say, say so. Even a motor mouth like me is occasionally lost for words. In fact, I was in shock for weeks after the diagnosis.     There is no real need to fill up that space with platitudes or clich├ęs.   When you said to me: I am in shock and I don't know what to say, I felt less alone.
Because after all, I am really no different to you: I am just a human being who doesn't want to die.      

 


 
3                           Give food.  Or alcohol. 
At some point most cancer patients make some change to their diet or lifestyle.  I feel that what I consume is one of the few things I can still really control in a life where absence of control is now my permanent albatross.    But for me, diagnosis was far from the time to give up alcohol.  
So I thank you, Mark, for the bottle of French champagne you dropped around a few days after I was diagnosed.  Some people may find this strange, but we drank it in a bittersweet toast to the future. And we enjoyed it. 
Food is also welcome.   At any time.   Nine whole months after I was diagnosed a friend dropped around on a Saturday afternoon with a home cooked casserole dish of Spanish chicken, sufficient to feed the family with left overs to freeze.     His mother had died of cancer, and in delivering this dish he told me that prepared meals were a wonderful gift to his family when they went through their mother's treatment, and that he had deliberately waited months to bring this round because he knew that life didn't instantly snap back to normal once chemo was finished (see 12 below).

4                           Listen and Acknowledge.
I could not share with anyone even a small percentage of my deepest darkest thoughts both on diagnosis, and even now, more than five years later, I keep 9/10ths of my Cancer Hell Thoughts to myself.   When I initially talked about my diagnosis I mostly focussed on the basics.   Partly because a part of me didn't want anyone to worry (see 5 below).   And partly because it took me some time to sort through how I felt.  I am still in some ways working through that process. 
So, although what I say may be trivial and banal and pretty light on medical details, I love it when you sit and listen. 
In a world of constant commentary, where everyone has an opinion, criticism, comment or  social media 'like'  or 'dislike' which they simply must share with everyone immediately, I make a plea for the wonderful, underrated and old fashioned skill of listening.  Really listening that is, without eyes darting to the side, or quick glances to your watch, or fingers twitching for a smart phone.   When you listen and acknowledge, I feel both more alive and less like anonymous grey faced patient no 3928904.

5                           Worry not. 
Leave the worrying to me. I've got cancer.  Not you.   Of course I don't really expect you to heed this advice.  I know you will worry.  I also know that in a sense it is much harder to be the person standing by on the sidelines watching the brakeless freight train that is Cancer, something you cannot control and cannot change.    I have worried plenty about my husband and children and my parents over the last few years.   That worry ate away at me and was in many ways harder than the fear of death and treatment.  
So what I really mean here is please, don't worry about silence, or be concerned that you might accidentally say something or articulate a horror I haven't yet thought of myself. 
I feel that the reason some of my friends and family avoided me was at least in part because they didn't know what to say, and were concerned they would say something tactless or scary.   I am pretty certain that the aunt who never called (and to this day, has not) did so not through indifference, but because her husband had recently died from bowel cancer, and she worried that she did not know what to say or, perhaps more likely, feared that she would speak of the grief and pain that was in her heart.
Please know that your worry is unfounded.  Believe me, I have thought it all.  I have pondered every twist and turn of treatment, every side effect, every statistic and every single 'why?'   In that sense, there is nothing you can say which scares me more than I have already scared myself.  There are no horrifying concepts you could put to me which have not already haunted me when I wake cold and trembling at 3 am.   There are no side effects I haven't either actually felt, deep in my bones, or otherwise imagined or feared, so you need not fear that you might 'say the wrong thing'.   Just speak from the heart, and it will be fine.

6                           Provide some distraction.
As F Scott Fitzgerald said 'The loneliest moment in someone’s life is when they are watching their whole world fall apart, and all they can do is stare blankly.'  
We all fall into the trap of the 'blank stare' from time to time. Distraction can weave magic.
Whilst someone undergoing chemotherapy is probably not up for a day trip to a winery on the Mornington Peninsula, a short local walk might alleviate the aches and pains which come with treatment.  Turn up on my doorstep and take me out for some fresh air. 
Films are also a fantastic distraction, the more brain dead the better.  I treasured and watched the DVDs I was sent, usually as it happened, by those with experience of cancer.   
 
 
 
7                           Accept your limits: you can't cure or fix me.  
I promise you, I don't mind.  
I don't expect you to cure me, or even suggest a One Stop Shop Fix (Goji berries! Turmeric! Flaxseed! Coffee enemas!).  
To be honest, I don't even expect that of my oncologist.   Sure, he knows about breast cancer.   Quite a lot, as it turns out.   But the awful , unvarnished and often unmentioned truth is that so much of cancer is random.   We do not know why some breast cancers metastasize and others don't.   We don't really know why chemo kicks some cancers to the kerb whilst others fight back and grow stronger every day no matter what treatment is tried. 
By all means, encourage me to seek the very best treatment.  But you don't need to take on the mythical role of Finder of the Cure.     That's not your job.

8                           Tell me you don't need a reply 
This may seem like a silly little point of etiquette but bear with me.  When I was first diagnosed I received what seemed like an avalanche of communications - mostly letters, emails  and texts (thankfully very few phone calls, although there were a few teary voice mails from some old friends with whom I had lost touch).
I haven't yet found a book on cancer etiquette, and even if there was one I wouldn't read it.   I rather think that once you lose your hair and eyebrows the obligation to be polite ratchets down a few points.   But the obedient well brought up young woman inside me did wonder, in the maelstrom of organising surgery, child care, work stuff, cancelling Christmas etc, when I would find the time to politely write back a note or email thanking the writer for their kind thoughts and assuring them that I am as well as I can be at this present time……
Many people who emailed and wrote simply said at the end of their note 'Please do not feel you need to reply.  Just know that I am thinking of you.'   Such a little thing, and yet it really lightened the load.  

9                           Come to chemo with me
There is no way to skirt around this - for all its apricot reclining chairs, wall hangings of prints of unicorns, rainbows and sunsets,  'Light & Easy' music and bustling warm nurses, the chemotherapy ward is a confronting place. Death hides behind the pile of out of date magazines, and each patient's face is etched with stress and worry. 
It follows that a trip to accompany a patient to their chemo infusion is not for everyone.  
But, if you feel that it is right to do so, offer to go to chemotherapy with your friend or relative.  They will say no if they don't want company.   But on some days, it is just the thing we need.  
After all, I made more than 35 separate visits to this pastel world.   Sometimes I was happy to stare mindlessly at the walls.  Other times I read voraciously. But on those occasions my mother insisted on coming, first driving two hours down the Hume Highway, sitting up straight and biting her lip as the chemo nurse set up the IV drip and inserted the needle into my arm for the infusion of red poison (otherwise known as Adriamyacin), smiling brightly at the nurses, sneaking glances at my neighbours (trying to guess, as I always did, what they were 'in for') I felt like a little girl again, in a warm cocoon of endless love and support.     

10                       The How are You?  Question.  
Everyone with a history of cancer, whether recent or not, is a regular recipient of this question: how are you?
This question invariably has an emphasis on the 'are' and often comes complete with sad, pitying or grave face, the asker seemingly bracing themselves for a cataclysmic response, for instance 'well my bone scan just came back with mets in my hips and ribs' or 'there seem to be some lesions on my liver which my doctors are concerned about' or even perhaps something like  'funny you should ask - I'm actually pretty tired because I haven't slept ONCE through the night since 2010'.  Even if I did have news like this to impart, I doubt I would do it this way. 
Better perhaps to ask 'how are you today?'   Because when you live day to day, as I do,  actually the here and now is what matters.   If today is a good day, it really is a great day -  the sun is bright, the colours of my world gleam and sparkle and the air is truly perfumed and sweet.  

11                       Remember milestones. 
Pre Cancer, Christmas was a time for family arguments, making trifle, watching Holiday Inn yet again, oyster and prawn feasts, 40 degree days, a spot of out of season gingerbread muffin baking and the scent of pine around the Christmas Tree.  Post Cancer, Christmas marks the day after I returned from hospital after my mastectomy, dazed and unable to even dress myself before returning to hospital on Boxing Day for a little further 'mop-up' surgery (dread word) to improve the 'margins' (even more dread word).  
Over time, I expect that maybe Christmas will regain some of its other meaning and the balance will shift back to what it was, a happy time.   But for now,  just the very thought of December and those metaphorical jingling bells stills my breath.  Indeed, some days I feel my whole existence is no more than a struggle of pre Cambrian proportions to move past each December, and notch up another year with no recurrence.  
If you remember this milestone and drop me a line on 20 December to say that you have remembered and are thinking of me, then you will have my eternal gratitude.  

12                       Take the long view.
Lest I be accused of complaining, I can say that it gets easier with the passing of time .  Sometimes whole days pass where I do not think about cancer.   I have weeks where I feel no lingering side effects of chemotherapy or surgery.   Sometimes I am tired just because I had a late night, and not because the nerve damage from the Taxol is still having an effect on my legs and arms.   But it is a long road, and I realise my life is changed forever.   There will always be some kind of worry, even if just at the back of my mind.   It lessens with time, but it does not vanish.  
As with the loss of a spouse, I know now that the hardest time is not necessarily days or weeks after the diagnosis.  No.  It is in the long months of treatment, and then 6, 12, 18 months post diagnosis.  
It is at those times that a quick email or note from you can lift my spirits again and remind me that I am alive on this day and that is what truly matters. 
 
J xo  

 
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