I attended a Breast Cancer Conference organised by my BCN [in Gloucester]
last Friday, one of the Topics being addressed was ’ Living With Uncetainty’
It was very interesting, the message seemed to be…
If you are ‘positive’…you may put off doing things as you are ‘positive’ you will live for many years…but as we know this disease is unpredictable…and it may be you get a recurrence or secondary…and then you will regret putting those things off.
If you are ’ negative '…you may also put off doing things ie, planning a holiday etc…as you think ’ whats the point I don’t know if I’ll be here ‘’ [who does!]…and it may be that you don’t get a recurrence or secondary…and then you too will regret putting those things off.
If you are ’ realistic '…you will realise that this disease is unpredictable…you will learn to not put off doing things, you will learn that somethings have to be planned ahead for…you will also realise that…yes you are living with a sword hanging over your head which at anytime could strike you again.
From this I realised that I have a ‘realistic’ attitude towards breast cancer…rather than what I thought…which was that my attitude was ’ negative’
It was also mentioned that in some cases its people many years from dx that suddenly find they need some counselling/support…probably because of the ‘5 year’ thing…when, family, friends and even medics in some cases have ‘’ forgotten’'…
My husband found this talk very moving and informative…it helped him to understand…that appearing ok mentally doesn;t mean you are feeling ok mentally…even though he is and has been wonderful through all of this I think listening to this topic being addressed/explained by a professional kind of opened his eyes a little more.
I think we need to reframe attitudes towards cancer away from ‘thinking positve’ (implying if you don’t you are negative) towards understanding the twin concepts of realism and hope.
Thinking postive needs to be binned with all those trite cancer self help books.
That sounds as if a lot of common sense was talked - and put really well. I wonder if the content of the talk could be made available?
I remember very clearly after one dx that I needed a new Winter coat and just felt what was the point if I wasn’t going to live long enough to get good use out of it! That attitude didnt last long
I renovated a house the first year after my chemo knowing that chances were I wouldnt see the benefits and that my partner who sat on his backside and drunk his way through my treatment would get the lot! But being realistic I knew my way of getting through was to carry on as usual and if the worst was to happen I’d have set fire to the house - or at least pushed him down the stairs with his bottle of vodka!!
Dawn re winter coat I rang onc to ask if I bought cashmere would I get enough wear out of it, or should I go for wool as it was cheaper and did not want to waste money. He said get the cashmere you have a few more winters left!
Coat is now 4 years old and wearing well, me well fingers crossed.
I’m having a really bad day today as the ‘discomfort’ in my ribs is bad BUT I still have not been diagnosed with secondaries, despite feeling that the two painful rib spots MUST be mets!
anyway, seeing the Onc next week and will demand a PET scan even though I will have to pay for it - bang goes the cruise -
Just love your story about the winter coat - we are moving next week into an old school which is only two thirds done up and I have sat here today wondering if I will ever see it finished. Your story has brought a smile to my lips, many thanks. love and hugs, Grace
I have always been pratical, strong and realistic and I think this has made a huge difference to life in general.
After my intial treatment I took my life in hand and went back to work (a new job) did loads of things I was
considering and although the cancer came back I do think my attitude made a difference to the time scale of the reacurrance
and made the gap longer…
I learnt to ride a motorbike after I was diagnosed with secondaries and now ride a 500.
I make the most of everyday, however small or insignificant that day may seem…
I even congratulate myself when I have a day of resting.
I think by being realistic you are almost certainly possitive too and have a greater
inner strength.
It’s nice to see posts like this, which should hopefully help those who are struggling at the moment with their own personal fears, and help them realise that we can still lead full(ish!), and enjoyable lives. I’ve long said that if we spend all our time fearing recurrence, then the cancer has won by effectively taking our lives from us, even if it hasn’t killed us.
I think there’s a place for positivity, in the same way that we have to accept that negativity too will surface from time to time.But, if we can manage to live our lives realistically, then we all benefit. Not just ourselves, as patients, but also our families and friends. I’m living with secondaries-“living” and thriving as well as I can, and glad for each good day that I have-and there are many of those. Ok, I know where the road will lead me, but have no desire to know how long the journey will take.
Have to say though that I don’t agree with Jane. I personally don’t like the self-help books that proliferate, but if they give hope or confidence to one person, then they’re worth it. Further, if anyone can live positively/in denial, then fine-if it works for them, then that’s great.Anything which helps even a small number amongst us doesn’t deserve to be binned. What I do find sad-indeed, tragic-is the fear which so many people allow to dominate their lives, thereby truly depriving themselves of quality of life. Conerences/information such as this should hopefully go a long way to helping us live with uncertainty-I’ll be looking out for a similair course in my part of the world.
I think as with anything in life we are all different and must respect our differences we have been joined together by this filthy disease and for some of us that is all we will ever have in common.
I could not operate and had no interest in computers, well that has changed I cant keep of my laptop.(Ians really)
Had no interest in politics, now cant and wont stop banging my drum for fairness and the abolition of post code lottery.
Oh by the way it is years since I went on the back of a bike, but bikingirl if you are ever in St Ives you have to pass my door. I would love a go.
I am spending like there is no tomorrow…expenisive macs £80 jeans, jewellery, almost daily lunch outs…new carpets, breaks in at least 4 star hotels…what else is teacher’s lump sum for early retirement…know I am priveileged to be able to do this in these troubled times.
Sorry to be harsh on those poor old self help books…
Hi Karen, thanks for sharing this, sounds like a great talk, and very sensible.
Lets face it, we can’t be bouncy, super positive all the time, it’s flipping hard work! I do get told I have a ‘positive attitude’ and yes I do look at the cup half full, always have. People’s faces if I tell them the cold hard facts of what my future could be are looks of horror, that I can discuss my own mortality so calmly… crikey that freaks em out but it is what it is. I am very lucky that I fee I have got a good few years (and coats) left to me yet, but having just had a reoccurance 10 months post treatment has brought it home to me even more, you have to live in the ‘now’.
Will look out for any similar events near me I think, always helps to hear these things from people who have the knowledge.
I believe never put off till tomorrow what you can do today, because when I am still here tomorrow I can do it again. Well thats if I liked and enjoyed it.
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