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  

 

Thursday, February 4, 2016

I am back, briefly

I am back, briefly

Hello, dear readers.

It has taken me about 45 minutes to log back into blogger.  After such a long hiatus Google freaked out and sent me all these emails warning me I was being hacked.  

Who would have thought Google would decide to annoyingly consolidate everything into one big non user friendly account with a 1990s style interface.

It has been so long I almost forgot both my user name and password, which is not helped by the fact I have 5 separate email accounts not including the home one. 

And I found more than 400 emails in my inbox, admittedly a rather large number of spam (not I don't want to 'collaborate' with you on my blog, sorry), but others, I am embarrassed to say, from dear internet friends emailing to check up on me and share their stories. 

To those who wrote and to whom I haven't got back to yet, I am dreadfully sorry.   I pride myself on being responsive and organised, and indeed, I get at least a 100 emails most days at work, and end the day with only a couple in my in box (not perfect of course, just slightly OC). 

As luck would have it, I am having a non superstitious month, and I have a few little thoughts and writings I have put together about cancer, post cancer and all of that stuff.  

I have put this off because I was pretty certain that continuing to write about cancer would curse me with a recurrence.   I am now slightly more philosophical about these things

None of my writing tends to feature any of the following words:

  • journey or cancer journey 
  • remission
  • courageous
  • pink.
I will explain why in due course.

In the meantime, it has been 3 years since I posted. 

My how the world of blogging has changed. 

No more blog rolls.  Hardly anyone comments any more.   It seems like a less generous, inclusive space, but I am sure that that is just the natural progression of life.  People are busy, and they find new and different ways to distract and entertain themselves. 

Most bloggers have moved to instagram, in my case, exclusively.  

And so, what that means is that I feel more like I am writing for no-one and no body, and that is a good thing.  So really  it has come full circle.  

The other anniversary which has passed by is my 5 year anniversary post my diagnosis.   And yes, I seem to be still here. 

I spent that day, a day I had been dreading, and anticipating, in equal quantities, in central England in a tiny honey coloured stone village called Easton on the Hill,  and here is what I posted to IG. 



Today marks 5 years since I was diagnosed with a breast cancer I was told was very aggressive. My children were 3 and 8. I was given a special pamphlet to help me explain 'cancer' to a boy who had just started kindergarten. 


I spent the next four weeks in total shock and denial. I had two major operations and then started two years of various treatments including chemo and Herceptin. And I don't even have room to list all the temporary and permanent side effects and issues arising from that treatment. I didn't really expect to be here to be honest. 


Being a patient in some ways is easy - you just let the system take over and you always feel supported (even though in some ways it is like attending your own funeral - so many flowers!). Being the family member or friend is much harder - so I would like to thank all those who brought food and champagne, wrote me notes, told me my newsreader style wig looked great, gave me the names of a great Chinese doctor and naturopath, sent me poems and DVDs and magazines and books, pushed me to keep exercising and just generally stood by me. 


Not just at diagnosis but six months and two years later. There were some friends and indeed family members who vanished never to be heard of again. But I guess that is more about them than me and other friends with cancer tell me this is quite common. I was lucky to get world class health care and to have an oncologist with both a sense of humor and great perception who understood what I wanted which was the nuclear option. Who also said do not whatever you do throw a five year survival party - because of course it is never over and in spite of what you might read there is no such thing as remission from breast cancer, not really. I was unlucky to be misdiagnosed by my GP so please do not do what I did and listen to the man who says you are too young to have a mammogram or ultrasound and trust your judgement always and always ask questions.



Love to all 
J

Wednesday, January 23, 2013

Myths and Mistakes

It has been so long since I posted I have had to seriously consider whether I should in fact close this blog down.  What happens when you delete a blog?  Can it be found floating around the ether?  It seems a shame to remove it completely.  
 
8 pm Fairhaven beach.  A rare still day. 

It has also been so long since I posted that I am starting to get vast amounts of spam comments to delete. (Why do the autobots target inactive blogs?  Seems counter intuitive to me.)  The other mystery of course is why do I lose followers when I don't blog?   Come on guys.  Hang in there. Surely infrequent posts are better than clogging up your reader with crap? 

I usually ask for no Xmas presents, but my husband ignored me
and this is what he gave me. A giant herb pot.  And still alive, last I looked.
 
So, I thought I would pop in to say, I am still here, alive and well (touches large piece of wood).

I have just had the most wonderful holiday down at the beach. We had a full four weeks away, which is the longest period of time I have had away from Melbourne since 1998.   So long that we returned to a completely dead garden.  Well the trees are fine, but the lawn, lavender, grass trees, jasmine and bay tree are dead or on the edge of death. So sad.  Perhaps we should have planned better.  But I didn't think Melbourne would have four weeks of no rain. 


So long that when I returned I really noticed all the cars and buildings were really close together, and felt cramped and busy all of a sudden.  Amazing what a change a few weeks in a different environment can make.

We spent our holiday swimming in the scary surf, doing Nippers with the children, cooking, roasting marshmallows, watching the tennis and cricket and old James Bond films, eating and drinking and sleeping.  Oh and reading.

Roasted eggplant, mint and pomegranate seed salad. 
 
I read a book every couple of days ranging from slightly trashy to sci fit to classic.   It was completely perfect.  

Wine, driftwood and trashy paperback ('Sister' - I wouldn't bother with it) 

I should say that I am not a particularly beachy person. I burn really easily, and I just had to stand on the beach, wearing hat and SPF30 mind you, for a few Nipper sessions for all my freckles to pop back up again.   And my hair.  Oh dear.   I just had to give up on getting it straight and shiny, and popped it back most days.  At least I have hair to complain about.  I can now finally say, 18 months after it started growing back, that is is almost where it was pre-cancer.  It takes such a long time to get back, much much longer than I had expected. 

540 Nippers posing for the news helicopter to
protest lack of government funding for the surf club 
 
And I also indulged my new addiction to Kundalini yoga, thanks to my Atlantan friend Jenny for the tip. I love Maya Fiennes so much I feel calm just looking at her face:


This book is brilliant by the way.  Easily available on line. 



I cannot emphasise enough how much yoga has helped me over the last few months. I really struggle with meditation - my mind races (yes I know the point of meditation is to control this) and it is very hard to get complete uninterrupted quiet in the house.  Yoga does require quiet but it is so much more doable with loud children around, and I still manage to get into quite a meditative state.   I highly highly recommend it.   And of course, you can do the Maya Kundalini yoga at home.   I prefer this to finding a yoga class which suits me (why are they always on Tuesday mornings or Saturday afternoons?)


I wrote a little article last year for the sometimes maligned Mamamia site.  It is about the myths which float around about cancer patients.  Mamamia annoyingly changed the title to 'Mistakes' which people make around cancer patients, which is the wrong word to use of course.  They have now published it (they didn't even tell me so I have only just seen it.)

I was going to ask you all to rush over and make nice comments about it, but there is not much criticism there, so it ain't necessary. But please by all means check it out at your leisure.  It is a consolidation of a lot of things I have been thinking for a while now.  Link is here

Have you been reading the GOMI thread about Aussie Mum Bloggers?  It's getting pretty long!  Leaving aside the 5% which is just very bitchy and malicious, I think there is something to learn in there for anyone who blogs.    And I have to be honest, some of the comments did make me laugh, and others I did agree with 100%.  Just makes me happy to not be a super huge blog with lots of sponsored posts and a gazillion readers. 

Another thing about being away for so long is that I arrived home and decided I am not completely happy with my house colour.  It is kind of this colour (Bristol Flagstone), we painted it 10 years ago.  


I want to paint it white, and give it a door like this.


(via a Beach Cottage)
 
Or this:
 

 
Is a white house really annoying? Does it get dirty and dusty?   I feel it is better for a house to recede than be out there and bright, but maybe a shake up is what is required.
 
I am going to do a juice cleanse for the start of February.  Given I do green smoothies blah blah I reckon it will be quite straightforward.  I wanted to do Orchard Street but irritatingly they only service Sydney.     So I am likely to go with Schkinny Manniny.  Silly name but it looks pretty interesting. 
 
That's all for now.
 
 


 

Wednesday, October 3, 2012

Hello

As a lawyer I get really annoyed about inaccuracies, misrepresentations and wrong information being given to me.

There is a lot of it out there when it comes to cancer.

But I can only post so many post anonymous comments on the Daily Mail in response to people who comment that anyone who has surgery and chemo for cancer is a fool or a 'Sheeple'.   I would like to help people sift through all that stuff.   I don't want people to feel bad about their treatment, or guilty, or God forbid, as if they have not been positive enough.  



Cape Otway by me
 
So I would like to mention my little Cancer FAQs at the side. I have just updated it, after leaving it un-updated since last November, which is way too long when you have a potentially life shortening disease.  

The reason for the delay is this. The longer I left it, the more superstitious I became that the very instance I updated it to say all is well I would have some catastrophic relapse into Cancer World. 

The same strange conviction has meant that I have not had my oven cleaned since December 2010, because the day I was diagnosed with cancer was the very day the Man Came To Clean the Oven. He did a great job by the way. But I feel that if I get him back, I will get cancer again.  (In case you are wondering, yes I have cleaned my oven in the last 19 months.  But myself, and not very well.)



From Anna Spiro's Instagram feed.

I know this is regressive, just like being a 16 year old and having some strange lovestruck repetivite thoughts like 'If this tram comes and if the boy is on it and sitting down the end then that means he likes me'.

But I can't help it. I have so little control over my life in some ways that if one way of getting that back is to have some little superstitions and phobias, then so be it. At least I don't have PTSD, which, truly, some people do get following cancer treatment.

Anyway, there it is.  Have a read and you can see where I am.

From Facehunter's Instagram feed

I am also in another place at the moment, the world of Instagram. I must confess, I am finding Instagram a great place to instantly connect with people, in a way which is really simple, and uncomplicated.   You can locate me on Instagram here

I have included in this post some favourite images from the last little while.   Fear not, you do not have to be inundated with images of 16 year old girls doing their nails. There are some wonderful images. 

 


 

From NatGeo's feed
 
To be honest, Instagram reminds me of blogging when I first started.  Before it got a bit cliquey, and a bit complicated, and a bit too much about branding, and advertising and making money from your blog, and counting stats, and linking, and etc etc.  Is that negative? I don't mean to be. 

I am just finding that I seem to have the time to post images to Instagram and I don't seem to have the time to blog. Feel free to follow me, but even better, go to Followgram and or sign up for Instagram if you have a smart phone and check out all the other amazing images, like Greenbeen below, who posts her fantastic breakfasts every day.


And if you have a feed I am not following, please let me know.  I still find the Instagram search function hilariously beta.   What I have found is a whole collection of Japanese people who post pictures of their very elegant, very charming cats.   I cannot resist.


via Ryukutora's Instragram feed


Stay happy, dear readers.

xo

Friday, August 24, 2012

Blue and White Scarves

Still looking around, in a general, aimless way, for some more things for the beach house.   No, I do not move fast.  

I want to frame a scarf, which is of course a not very original design world idea.  Just check out Pinterest for all the gazillion examples of this look. 

Specifically however I would like blue and white and ideally a map.

I love this the most, from Table Tonic (only available in store) which Louise posted on Instagram yesterday:




I actually have a couple of Hermes scarves, as I mentioned in this post, which I contemplated wearing when I had no hair.  You know in the end I never wore a scarf when I was bald.  I just did not like the people staring which went with it.  The expression of someone who looks sad and shocked and sympathetic and pitying all at one time and then quickly tries to disguise it because they feel bad is something you only want to see a few times. 

The sadness for me is that the colours of my scarves, given to me by my mother, really don't suit me. In fact when you browse Hermes designs, some of them are just not that easy to wear.  Maybe that is why people have started framing them.

Here is another with a map in it (actually looks like the same designer as the one above):

(via Absolutely Beautiful Things)

The ones I like tend to be older.   Like this:


This is from 1969, design by Francoise de la Perriere.

Or this one, from One Kings Lane, which is a 2000 design.


And this amazing collage (sorry lost source), has some beautiful little blue and white in it. 



I can see this is going to be a long term project.

Weekend in Melbourne this weekend.  Lots to do including:


  • take children to see Brave
  • fish curry for dinner tonight. 
  • buy bedside table for son's room.
  • buy under bed storage for son's room.
  • clean out dining room.
  • college university reunion dinner tomorrow night. 
  • take bags of clothes to the Salvos.
  • get some sleep. 
  • do a bit of work. 
Have a lovely weekend.   If you want to see what I cook I will try to remember to post it on Instagram



Related Posts with Thumbnails