Secondary breast cancer: But you’re going to be okay, aren’t you?

(GETTY IMAGES)

I’m used to the slightly blank look I get when I tell people that I’m living with secondary breast cancer. I’m used to having to then say it’s advanced cancer and seeing more blank looks but worry now creeping into the edges.

I’m used to saying it’s in my lungs, liver and bones and being greeted with real concern and I’m used to finally having to say it’s incurable, which is when the person says ‘but you’re going to be okay, aren’t you?’.

How do you say no, it’s going to kill me, I just don’t know when? And right now I’m doing pretty spiffingly with the disease under control but the side effects of the damage are a bit of a bugger?

I love doing my bit to raise awareness of the disease and to help the public understand the difference between the primary ‘curable, survivor and all clear’ journey and mine but have often thought that with no celebrity story it would always be an uphill battle.

I remember a time BK (before Kylie) when as a young woman with breast cancer I was considered quite the oddity and at times thought I should be in museum rather than getting on with life. Kylie’s diagnosis changed all that and people accepted much more readily that I had been ill.

With mixed feelings I have wondered if a famous person with secondary breast cancer would make the same difference though I would never wish this horrible disease on anyone. This week one incredibly brave person has stepped forward. British singer Bernie Nolan has shared her story of living with secondary breast cancer and I have to take my hat off to her. To be the first to do it and be so honest about it does take some gumption but the awareness she is raising is so vital.

Reading her talk about her journey immediately transported me back to mine. I remember all too clearly the appointment when I was told the cancer had returned. I had a prolonged route to diagnosis and by the time I was sat in front of an oncologist I had guessed it was in my liver, suspected my bones, but the lungs as well, that was a curve ball and like Bernie it was the word ‘incurable’ that stuck in my head.

When I had the primary diagnosis my reflex action was to say ‘I’m not going to die’ and everything that happened after hung off that phrase. With the secondary diagnosis there is no ‘I’m not going to die’ rally cry as it’s incurable, you will die. There is then no reference material that you can pin your hope to, however, maybe Bernie’s story will change that.

I lived without hope for the first three weeks after my secondary breast cancer diagnosis, three weeks of shock, fear and horror.  Finally I found hope, I heard of a lady that had been living with secondary breast cancer for over 14 years and I clung to that with my life and developed the mantra, ‘if she can survive 14 years then so can I’. That was the moment the fight back started.

I can’t help but think ‘what if’. What if the doctor had said straight away no it can’t be celiac disease go to the cancer chaps? Or what if my doctor knew about the rapid diagnostic centre at the Marsden which could have diagnosed me in one day? What if my personal trainer/nutritionist had sent me to the doctors at the first sign of back pain and stomach cramps rather than say it was gluten reactions?

Hindsight is a wonderful thing and I feel that perspective is needed with the research out this week about breast screening programmes. At that early diagnosis we currently can’t tell if the cancer will kill or not so until the technology improves isn’t it better to treat just in case? I’d rather have treatment and be sure the cancer is gone than leave it to chance! (See Breast Cancer Care’s summary of the latest breast cancer screening review findings here.)

Around 1,300 women won’t die each year because they were screened. I think that’s pretty good news and a very good reason to make sure screening continues. But it is important that women receive clear and balanced information about the pros and cons of screening. I dream of a world where there are multiple screening methods, that we know why some people get it and others don’t, instead of my current theory, bloody bad luck. Most importantly I dream of a world where no one has to sit through an appointment like the one Bernie and I have done and be told that your cancer has come back and that it’s now incurable.

For more information visit www.breastcancercare.org.uk/secondaries

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• Hugh Otterburn

  That’s a brilliant article, Ismena . . . . . hopefully your courage in
  writing this will go some way to saving other lives from this wretched
  disease, and I hope that you and Bernie Nolan are going to be around for
  a while yet. We are told that cancer will directly affect one in three
  people, yet so many still believe that cancer is something that only
  ever visits ‘other people’ – it comes as a horrible shock when you
  realise that you have joined the ranks of the ‘other people’ and that
  you are facing the prospect of cancer yourself. My day of horror was
  October 2nd 1990, the op was a week later and thanks to two brilliant
  surgeons and the caring staff at Shrewsbury Nuffield, I am still around
  today and have almost slipped back into ‘take it for granted’ mode . . .
  . . and then I am reminded again by news like yours just how lucky I
  am. May good luck and good health be with you, Ismena, you certainly
  deserve it . . . . . .

• Christopher Barrett

  This is very sad. I just hope that she pulls through, but the fact that the cancer has spread to her lungs, liver and bones gives me great cause for concern.

• AndyMar

  Read the article carefully – sadly she won’t pull through but with her attitude will enjoy her remaining time. Very best wishes to you Ismena

• http://www.facebook.com/people/Anders-Andersson/100001085940779 Anders Andersson

  Parison a rainy day: I assume that you are aware that the French Villejuif Centre(s) are tackling Secondary Cancer with hopeful results. The procedure is frightening, they do not promise anything, but it is worth knowing. (Ambabelle)

• http://www.facebook.com/Marilyn31147 Marilyn Armstrong

  My mother died of it. So far I’m a “surviver.” Whatever that means. Hang on in there. Thank you for talking about it. I hope no one is telling you that a positive attitude will cure you. If they do, please whack them for me.