Sunday, 10 May 2015

EPILOGUE: A time to look back and then to look forward ...

There are many things in life that can change our outlook on the world; having children, losing a loved one … but facing a significant illness or injury must come pretty close to the top of that list.

Of course, that perspective change can be good or bad. For some, there might be an element of blame and recrimination. Why me? Why now? Why don’t people understand?

I know I’ve certainly had my moments of darkness since my diagnosis with breast cancer in January 2012 and some of them have been far from fleeting. I’ve never questioned the ‘why me?’ - (after all, ‘why not me?’) - but I have struggled with the perceived lack of understanding of my situation and what I’ve been through and the sense of isolation that I have felt.

There was a recent television advertising campaign for Macmillan Cancer Support. There were two versions, one with a man and one with a woman, but the message was the same. Essentially, they are stood on a barren, bleak landscape. The wind howls around them and they are all alone. Then they hear a voice calling their name – they turn – and you realise that they are in a hospital waiting room with a Macmillan support worker by their side. The strapline ends ‘no-one should face cancer alone’, or words to that effect.

When I first saw that advert, I cried. It encapsulated everything that I had felt, and had continued to feel, long after my treatment and reconstruction had ended. Cancer, among other life changing experiences, can leave you feeling very alone. You look fine, therefore you must be fine – right? Wrong.

The dark before the dawn
As my close friends will know, I have struggled for a very long time to come to terms with what I went through and what I have ‘lost’.

It was a very protracted chain of bereavements: loss of health; loss of independence; loss of hair and physical appearance; loss of confidence; loss of mobility; loss of my breast; loss of fertility; loss of my relationship … A complete loss of control and my sense of self. It was an enormous amount for one person to go through and then to try and just get ‘over’.

Obviously, some of those things I have since regained and some I will never get back. That’s just the way it is.

As a previously very confident, self-assured person, I found it very hard. I felt completely adrift and abandoned. The only person that had any real comprehension of what I been through, was no longer part of my life. I’d been through this enormous life-changing thing and no-one understood. I had no-one to confide in about how I felt. It was very lonely.

And I didn’t cope well. For a while I was a complete mess. Part of this, I have no doubt, can be attributed to the Tamoxifen that I will continue to take until I am at least 44, probably 49. It’s a wonderful drug but with horrible side effects. I haven’t suffered as badly as some, who give up and stop taking it, but the horrendous emotional slumps that I would experience were bordering on debilitating. I’d wake up – cry – go to work. Come home – cry – go to bed.

So you end up being prescribed more drugs to help ‘even’ your mood. It does improve things but has made my ageing and foggy-chemo-addled memory even worse than before!

I also had high expectations of myself. You expect to be the person that you used to be but, of course, you aren’t. When people talk about getting back to ‘normality’ what they actually mean is managing and getting used to the new status quo, rather than going back to where you were.

It’s about finding that place of acceptance and moving on. Cancer may have changed my life but it certainly has not ended it. It has made me stronger in many ways but still weaker and more vulnerable in others.

Time to recover
My Mum made a good point to me, some months ago. She said that up until about fifty years ago, when someone had suffered a serious illness, trauma or injury they would often be sent away to recuperate. They would be given time to adjust and rest.

In today’s busy world though, we don’t seem to give ourselves that space. We put pressure on ourselves to ‘suck it up’ and ‘get on with it’. I certainly did. And then got frustrated with myself when I would lose my footing and slip back down that dark emotional slope.

It’s recognised now that many cancer survivors (1 in 4) experience a type of Post Traumatic Stress Disorder. I’m not saying that is exactly what I had but I certainly felt very let down and angry: by my body, by some of the treatment decisions, by my ex-boyfriend, even by some of my own family …
Then there was the body confidence issue. Despite knowing that I’m still an attractive, slim size 8 (not bad, for 41!), I am also acutely aware that I now have a plastic tit and a tattooed nipple. For a long time, this held me back from wanting to start a new relationship.

What I should have done, much sooner, was (a) to stop being so hard on myself and (b) to talk to other people who had been through the same experience.

So it was in September 2014, after yet another public alcohol-fuelled emotional outburst in front of my friends (and a few strangers), that I set off to Leeds for a ‘Younger Womens’’ Breast Cancer Care workshop to talk to fellow cancer sufferers and survivors who, like me, were diagnosed under the age of 45.

It was amazing! Obviously very emotional too, but it was such a relief to finally talk to people that just ‘got’ it. We shared stories, a few tears, and reassured each other that we were not going through this alone. They are a fantastic bunch of ladies and I now follow their progress keenly via Facebook and blogs.

This event also co-incided with the restoration, finally, of my wavy mane of hair. It had been a slow process waiting for it to grow back to its former voluminous glory but, when the day finally arrived, I think it’s fair to say that my hairdresser was as excited as me!

Every time I go in to see her now, she always comments on how my hair has returned to exactly the way it was before treatment. It’s true it has – and I count my blessings, because not everyone who has been through chemotherapy treatment is that lucky.

It may sound shallow, but regaining your physical appearance is such an important part of your recovery. To look and feel like your old self, and regain a sense of confidence and control, is the ultimate well-being boost; and one that can’t be prescribed.

Ongoing treatment
There are occasional medical reviews in the form of blood and hormone tests via my GP but my hospital trips are now solely limited to my annual mammogram. I can get in touch with my Breast Care team should I have concerns but it is the ‘Marsden’s policy not to do formal check-ups. It’s certainly been nice to feel ‘finished’ and get off that appointment treadmill.

Nonetheless, I do/will need to go to hospital for other things. For example, because of my family history and recent chemotherapy treatment, I requested to have a bone density scan this year. An appointment was duly made at St Mary’s in Paddington and off I went …

Now, the Royal Marsden – while NHS funded - is a very well maintained, modern facility (albeit in a heritage building) in the heart of one of the most expensive parts of London. St Mary’s, is not.

The minute that I set foot in the hospital, went past the obligatory ‘League of Friends’/ Costa Coffee and onto the coloured floor lines that lead you to the relevant department, I had the screaming heebie-jeebies! It reminded me so much of those early days of diagnosis and treatment at Ealing Hospital – endless waits, needles, scans – that it made me feel physically sick. I came out, overwhelmed.

That’s not to infer that there’s anything wrong with the facilities at Ealing or Paddington (after all St Mary's recently welcomed Princess Charlotte), but it was the mental/emotional association that it elicited from me that I was not expecting.

Anyway, to cut a long story short, it turns out that I do have Osteopenia in my spine. This is the stage before Osteoporosis and I now need to take supplements to prevent further deterioration at this time. This bone-thinning may have already have started prior to chemo, but it won’t have helped. So, just glad that I kept asking for the scan as it is not an automatic process. I’d urge other ladies in their forties who have had chemotherapy to do the same.

What next?
But it’s not all creaky joints and middle-aged pill popping – oh, no! One thing that this whole experience has taught me is live for now. Live in the present and value who and what you have; you don’t know how long you may have them! I just don’t look that far ahead anymore.

Which is why, some of you will know, that I’ve been travelling a lot this year. I’d always wanted to go to Sri Lanka and so, in February, that’s exactly what I did! It was a brilliant experience with some wonderful people and memories.

I’ve also been travelling a lot with work. In the last year nine months, I have been to Cannes for a glamorous awards do, spent numerous days/weeks in Amsterdam, been on various off-site training courses, and just come back from a two-week stint in Asia. 

It’s been bloody hard work but I’ve made the most of my free time too: catching up with Mr P (who also happened to be in Hong Kong), getting to know my team in Kuala Lumpur and living the ‘Raffles’ high-life in Singapore with cocktails and afternoon tea. My life is really good.

Raffles Hotel, Singapore: Live for today! (Diet tomorrow ...)
So 2.5 years out of the remission gate, and 1 year after completing my reconstruction, and I’m feeling as much like my old self as I think I ever will. In the end, I just needed time. And I still do. I still occasionally find myself crying – I did writing this blog - but it’s OK. It’s normal.

I also need to remember to be ‘kind’ to myself. I work with some amazing, but much younger, colleagues and I do need to remind myself that I can’t physically or mentally keep up with them all the time. (But I can still out party them!)

Ch-ch-ch-changes …
I started this blog talking about changes. Change is a fact of life. Nothing stays the same. It’s not always a case of being better or worse, sometimes just different.

Sometimes too, things change for a time and then revert back – as they have for me. Certainly, I’m the closest to being back to the ‘old Kate’ than I have been since late 2011. I feel well, look well, and am loving the good health and independence that I have now regained.

And that’s a change that I can live with.

Keep well, everyone. Much love.
Kate xxx

2 comments:

  1. Thank you for that post kate,
    I luckily do not have cancer, but i live with a chronic condition or 2, neither visable, so i empathise with the feeling that everyone thinks i am well again.
    Also you talking about PTSD over many of the issues you have had to deal with has sparked a lightbulb in my own head.
    But most of all thank you for letting us know how you are, we followed your journey and it is good to see you coming out the other side and sharing the feeling that i have heard a lot of cancer survivors talk about.
    xxx

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