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Living with cancer...my thoughts (part 3)

It is exactly 7 years ago today that I was first diagnosed with breast cancer.

I guess depending which way you look at it, it is either gosh how lucky that you are still here after 7 years – not everyone is so fortunate, or, that is a fair whack of time to be on the cancer treadmill. The irony is that as far as statistics are concerned, even though I have incurable cancer, because I have passed 5 years, I am also classified as a survivor. If I listen to statistics, I will not be here by next year, so in my opinion, it is about me as an individual, not a number. I try not to compare my situation to others and attempt to take it as it comes.

So whilst I usually save my ‘cancer days’ for medical appointments and treatment days, I thought I would honour this milestone and release some thoughts I have had over this time. Be warned however, it is quite rambling and not very cohesive.

I remember as I drove myself to that doctor appointment 7 years ago, I had the very clear and distinctive thought that whatever happened today, my life as I knew it would never be the same. I don’t think you can ever really be prepared for the overwhelming feeling when you are given a cancer diagnosis. In the lead up to that day however, my instinctive antenna had been on high alert…the bleeding nipple, the innuendos from the ultrasound and biopsy technicians… I suspect I already knew. The part I wasn’t prepared for was that it had spread to my lymph nodes and that at first diagnosis I was stage 3. I remember my first thoughts were…’what about Harry?’ There was nothing that could counteract my fear that Harry would be without his mother.

Those of us untouched by cancer, most likely don’t really know the ins and outs…I certainly didn’t. We are immediately put into fear mode as we know that it can be a death sentence. My doctor actually said to me that day that although you have an aggressive type of cancer and it is not a great outcome, you might leave this office and get run over by a bus. WTF?

This rather odd remark from my doctor was just the first of many comments that have come my way regarding cancer and its long reaching tentacles. I am fully aware that often people are at a loss for words – I would be too. It is a no win situation. If you comment about feeling positive, it can sound dismissive. If you comment how dreadful it is, you can trigger depression. I would suggest to forget the advice and comments and comparisons and just be there for them and ask every now and then how they are doing…probably not, however, if they are enjoying a ‘normal’ moment.

So you have the operation, you do the hideous treatments, you watch as your body is compromised to the point of destruction…and then you wait. A couple of years go by, you adjust to the ‘new you’. You take on the physical, mental and financial challenges and you start to believe that perhaps you will be the exemption to the rule…that your cancer will disappear and not return.

Two years from first being diagnosed, I learnt that I had another cancer. This time it was in my thyroid. No problems they said. Not connected to the breast cancer, we will simply remove it and all will be fine. Now whilst I did not enjoy having the 2 operations to remove my thyroid and I now am on medication to replace its function, it was quite interesting, that this time, the diagnosis did not mentally affect me. I did not get upset, in fact I really didn’t think much of it. The difference was, I was told there was not much chance of it coming back – death sentence not in place. Not sure if this reaction was because I already had something far worse to compare it with, or the fact that it was stage one and unlikely to kill me…but either way, I think it is a lesson. No need to overreact to something that can be cured.

It was another 2 years later that an MRI test picked up that there was something on my lungs. June 2015 I was told that the breast cancer had spread to my lungs and now I am officially stage 4 and going by current statistics I had about 4 years to live. Apparently only 18% survive metastasized cancer past 5 years. But again – stuff statistics!

If I thought that anything in the past was hard to digest, this was by far the most devastating and disbelieving piece of information that spun my brain into a complete scramble. Still to this day I cannot comprehend how the end of my life would come to be. I cannot comprehend not being here for Harry. Even though I know I will be in treatment for the rest of my life, I suspect that I am living in total denial and will again be shocked when the next stage of this hideous disease strikes. People say I am brave or inspirational because I just ‘get on’ with life. Whilst I try not to let cancer define me or change my existence, the reality is that I just mentally put cancer away in a corner. That is not brave – just my way of coping. Being brave is knowing of a danger and choosing to continue into the face of that danger regardless of the consequences. Coping with having cancer is not brave, it is simply trying to survive.

I think it is important that I recognise that all the things that physically affect me currently, are not due to the actual cancer, they are due to the treatment of cancer. The effects vary day to day. The obvious reply to recognising physical issues is simply to say, - ‘but at least you don’t have the alternative…you are still here.’ Yes indeed! I do recall years ago praying that I would put up with anything physical – just keep me alive. So this is not a complaint – I accept that it is what it is. Sometimes pain gets in the way and sometimes it’s vanity that leaps into play. Simple things, like being able to once again enjoy being pampered at the hair dresser. Silly, I know.

To be told you have a certain amount of time to live is bullshit. Some may think that knowing when the end is coming is a good thing as you get to plan and ‘put your house in order’. Others may think that ‘hey, we all have to die of something and that none of us is getting out of here alive’. All true, but in all honesty, living with the cloud of death expectation and knowledge of what is to come at a relative early age, well that just sucks. I don’t want to plan my end, I don’t want to accept that I will die sooner than later. When I applied for my passport last year, the only option for its longevity was 10 years and I found myself wondering if there was any chance that I could outlive my passport. So I stay in my state of denial and blissfully imagine myself at 85, still untangling the knots in my hair piece.

Mostly I do try and ignore having cancer but I do not wish to underplay the effects. It is a struggle mentally, physically and financially. You wake everyday wondering how it may impact your day. You go to scans every three months to learn your fate. It is the worst time waiting on the results. If nothing has changed, you sigh relief and look forward to breathing again for another three months.

Okay enough feeling sorry for myself. In fact talking about feeling sorry for yourself...don’t do it! There are of course many times that you wish things were different…but feeling sorry for yourself is not helpful. It means that you are dwelling on something far too devastating and destructive and can take away your independence and strength of mind. I deliberately avoid saying I am battling cancer or fighting to live…that is not helpful, I avoid using the word ‘terminal’ and I choose to say I am living with cancer.

Many people ideally believe we should ‘live everyday as if it’s your last’. That however is not always reality or practical…I still need to wash the dishes, sweep the floor and pay the bills…and there is no way I would choose to wash the dishes on my last day on this earth! I do think however, ironically, that cancer can be the gift of life. So whilst I am not writing or fulfilling bucket lists, I have chosen to make sure I put one day aside every week to spend with my son. It is called Wednesdays with Harry. We sometimes do all day activities and sometimes just something small – either way it is time out just for each other. It is building memories and at the end of the day, that is really the only thing we have. I would encourage everyone – cancer or not, to initiate your own Wednesdays with Harry.

I remember when all this began that I had the thought that I would never laugh or smile again, that I would no longer know happiness. I do however smile and laugh often and happiness and joy does still exist.

So there you go, another somewhat shambolic account of my cancer experience to date. Next ‘Living with Cancer’ blog hopefully in a few years. In the meantime, I promise my next blog will be full of humour and not one mention of cancer in sight. xx

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