Cancer, the elephant in the room

Cancer is so individual.  No two types or experiences of living with cancer are the same.  However, this doesn't mean it has to become the elephant in the room.

I was really helped by learning from my late husband's experience and attitude towards living with cancer.  For Matt, the Double Hard Bastard, he wasn't going to be held back by 14 month prognosis.  Instead, he shared openly that he was living with a brain tumour and gave everything (within reason) a go.

As Matt's wife, I learnt that it was ok to talk about cancer, in fact it's kind of therapeutic to talk about it.  It gives you the opportunity to get your head around what you've put your body through.  I really don't mind people asking questions.  Cancer can seem like such a big scary unknown.  The way I learnt about it was by living with Matt and asking him a myriad of questions about surgery, treatment, medication, fatigue...  If you're not sure about something, just ask.  Cancer clubbers tend not to get too embarrassed - we've been through such indignity with our appointments and treatment that a question is nothing!

When you're first diagnosed with cancer your brain goes into overdrive.  You're overwhelmed thinking of so many scenarios, different endings and possibilities.  You're scared and don't want to be alone.  Having people come to appointments with you, to take notes, listen and process the information is a comfort.  My hospital buddies were the best people ever to have by my side.  They understood it was ok to sit in silence in the waiting rooms, they didn't have to fill the space with nervous chatter.  They were also able to treat me as me - the Kris before the cancer diagnosis, and made jokes as well as ask some tough questions.  

One friend asked me whether or not I would have treatment.   She asked whether I would stay in the UK or return to NZ.  She even acknowledged that it might mean my life would be limited to months rather than years.  I was so grateful to her.  I'd had all these thoughts going round and round in my head.  She just sensed when I was ready to talk.  I was relieved that I had someone who was prepared to look at the reality of the diagnosis and talk about best and worst case scenarios.  This approach isn't for everyone.  While some may not want to engage, others will find it helpful.  

Another friend sent an email full of useful links for cancer charities, support, nutrition and supplements.  The best bit was the note that came with it: "sending this for you to read when you're ready.  I won't be offended if you don't read anything but if you want to talk anything through, I'm here and ready when you are."  It was the best thing.   I knew she cared and was thinking of me.  She wanted to offer help but she understood that I didn't have the head space to read or process the information at the time she sent it and that some of it wouldn't necessarily sit well with me.  It wasn't until after my second chemo treatment that I was able to read the email and benefited by finding out about the amazing Penny Brohn.  If you want to give advice, don't be offended if we don't act on it straight away or if we choose not to take it on board. 

One thing living with Matt taught me was to learn to sweat the big stuff.  If people want to give advice, that's fine by me.  I know it's being given with the best intentions so what's the point in getting frustrated and annoyed?   However I do know unsolicited advice is a pain point for many cancer clubbers.  

When you join the cancer club, you crave normality and your old life.  One friend, who has been there for me more than I've ever been there for her, called me up one day, really upset about something that had happened at work.  At the end of the call she apologised and said she shouldn't have been worrying me with her work problem when I had so much bigger problems.  People, we want to be there for our friends and family.  You have no idea how helpless we feel so any opportunity to help and for some semblance of normality is a god send.  The best thing you can do for us is to keep us involved in your lives.  OK, not the trivial stuff but anything that you'd normally share, continue to share.  Just understand we might be a little slower to respond.

So much control and dignity is taken away with a cancer diagnosis. For me, one of the worst things you can do is to treat someone with cancer like an invalid.  When friends and family start to "help" when they wouldn't have previously, it makes you feel less of a person than you were before.  I know it's hard not to help - I did it so often with Matt without realising the affect it had.  I remember on our last social trip out the house I over compensated, speaking for Matt and not letting him carry any drinks, taking away his dignity and sense of independence.  That's not to say we don't ever want or need help and sometimes we are just too proud to ask for help.  I think the main thing is to be aware that sometimes helping really isn't helping and to think twice before jumping in.

Finally, please keep including us.  Invite me out but understand that I might have to bail at the last minute if I've overdone it and run out of energy.  It's not personal, it's just living with cancer.  I thrive on having things to look forward to - it's what keeps me going, knowing I'm living and not just existing.  However sometimes I have to admit defeat and spend the day on the sofa or in bed rather than getting out and about.      If it's something you're not sure I'll be able to do - at least invite me and give me the option to decline.  I'd rather have to decline than find out something happened and was kept a secret from me as you didn't want to offend.  Living with cancer does bring limitations and yes, it sucks not being able to do some things but it sucks more to feel left out.  

Cancer doesn't have to be the elephant in the room.  We're the same people prior to diagnosis, we're just bigger divas now.

  • it's ok to ask questions about cancer and treatment
  • for me, it's ok to talk about the future - or lack of it
  • it's ok to joke, even jokes about death and dying - we're all going to at some stage
  • think before you give advice
  • think before you jump in to help
  • share your problems, it makes us feel normal and included
  • include us and invite us like you used to

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