When Nicola Met Cancer Research UK – How Research Helped Save Me

Cancer & Me

Last week I was asked to speak at a couple of Cancer Research UK events about my experience, which I was thrilled to do.  The benefit of research is something I’ve experienced first hand, I am passionate about it and it’s why I am a massive fan of Cancer Research – and pretty much everyone I know who works there!

This is my story, that I shared during my CR-UK speeches (not word for word, my memory isn’t that good).  Can you believe I totally forgot to take photo’s!  Imagine me looking slightly nervous but trying to appear confident and lots of very lovely people watching and that’s basically what it looked like.

Finding Out

I found out in January 2012 that I had Bowel Cancer.  I was 31.  I wasn’t shocked.  I knew I was experiencing classic symptoms as I had a strong family history.  My mother died from bowel cancer in 2008, she was only 52, after having bowel cancer for the first time in 2003.  My Grandmother also died of bowel cancer in 2004 when only 69.

Despite this, getting diagnosed was hard (I’ve talked about this at length here).  Mainly due to an outdated thought held by GP’s that bowel cancer is an “old” persons disease.  I was also pregnant and some of the symptoms crossed over.  When I reached the point my symptoms were unbearable I fought for tests until my GP referred me.  My daughter was only 6 weeks old.

Diagnosis

After having a PET scan, I discovered just how extensive the cancer was.  It was stage 3C, meaning it was as far spread as it could be without reaching another major organ.  I was told I needed ‘radical’ treatment meaning I would be very ill and unable to care for my children on my own.  I was also informed that the treatment would bring on early menopause, infertility and I would need a permanent colostomy bag.  Armed with all this information I went into a year of physical hell.

Treatment

I assumed my treatment would be the same as my mum, I was completely wrong.  In 2003 my mum had surgery followed by 6 months of weekly chemotherapy given through a drip in hospital.  My mother heard about a new type of chemotherapy in a tablet form that you could take at home. Mum asked her oncologist if she could change but was told it was still in the trial stages and not yet available.

Getting to be at home with my baby girl

Getting visited in bed by my baby girl

10 years later those chemo tablets were now the standard treatment for bowel cancer and what I was given.  This was a landmark moment for me, getting to benefit from that trial 10 years earlier.  I received 1 dose of chemo intravenously in hospital, followed by chemotherapy tablets taken at home everyday for 2 weeks. This meant;

  • I could be with my children more
  • Easier with visitors
  • It’s just a fact that being on your own sofa is a thousand times nicer than being in a chemo ward!

Obviously there is more to developing a new type of chemotherapy than comfort.  It’s a more effective way to treat bowel cancer.

I was fascinated finding out that Cancer Research UK were involved in developing part of the chemotherapy tablet I was put on.

My treatment was also delivered differently.  I had my treatment at Addenbrookes hospital where they had been researching and trialling the order in which a patient receives cancer treatment.  Under the trials, patients were given chemotherapy targeting the whole body first, then radiotherapy and daily doses of chemotherapy targeting the tumour, surgery and lastly more chemotherapy.  My oncologists believed this would be a much more effective way of treating my cancer and I truly believe it was.  When they came to operate my cancerous tumour the size of a cricket ball had completely melted away.  Most importantly this means my chances of it coming back have dropped drastically – all good!

It wasn’t just the treatment that had improved, everything had.  From the understanding of bowel cancer to the genetic developments.  From the patients perspective to the general care for my well-being and side effects whilst on the horror that is chemo!

All round, I truly got to experience the different that research and development can make.

 The treatment was still hard, verging on impossible sometimes with me wanting to give up.

I know there is no ‘good’ time to have cancer but I did feel particularly unlucky to have it with a 3 month  and  2-year-old.  I felt like I missed most of Holly’s first year.  After getting to spend every moment with James when he was a baby, this was really difficult for me.  I missed the first time she rolled over and sat up, the nanny we were forced to hire enjoyed these.  I will always remember fondly that when Holly stood up and lifted her leg as if to take her first step, our nanny quickly pushed her over before she could and carried her around for the rest of the day so I wouldn’t miss it – bless!  Of course Holly didn’t try walking again for another couple of weeks but I was there to see it.  At the time husband used to say;

“Holly doesn’t care if you see her roll over for the first time or not, she cares that you are alive, to be with her and watch her grow up.”

Ain’t that the truth!

Cancer’s Legacy

Even though the cancer is gone, certain things remained.  Like the colostomy.  Early menopause and HRT.  Antidepressants I was put on to get me through the end of my treatment when I wanted to stop.  An emotional battle to comprehend everything I had been through.  But it’s not all bad news…

Cancer has left me with a strength I didn’t realist I had.  It’s the reason that I have fulfilled lifelong ambitions like finally going to university, becoming a writer and speaking in public.

When You Give to Charities Like Cancer Research UK

Without wanting to sound completely narcissistic, it feels like you are directly helping me and mine.  It feels like a very personal gift to me.  Whether it’s time, money, help, it directly impacts how me and my family are, and how our futures will be.

I know that I have a genetic cancer but at the moment the genetic link is unknown.  Once found, we will be able to see if my family are effected by it.  This will be breakthrough research for me.

Looking at the differences between mine and my mum’s treatment in just 10 years gives me confidence of where we will be in 10 years time, or 20 years when my children may be facing it.  If research continues the way it has been going, they will be walking into a very different landscape of treatment, understanding and chances of reoccurrence.

I believe research saved my life and for that I will always be truly thankful.

 

If you are feeling inspired to help – FANTASTIC NEWS!  Stand Up To Cancer is coming, click on the pic and GET INVOLVED!  Or you can donate directly to my Just Giving Page

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When Nicola Met Glaxo Smith Kline

Cancer & Me, Journey Back to Health

I did the most fantastic thing this week.  Glaxo Smith Kline approached Cancer Research UK as they wanted a guest speaker at an in-company seminar to give a patients perspective on Cancer to their oncology scientists and CRUK asked me!  The thought was slightly scary but I figured, when I am I ever going to be given a chance to speak at Glaxo Smith Kline again?  And I keep saying how much I want to spread the word so I better get on with it.

On a personal level, I was so impressed that this is something GSK do.  The whole point of the speech was to put into human terms for their scientists, what it is they are doing, why they keep researching and improving oncology medication and inspire in them the true difference they can make.  Definitely something I would like to be involved in.

The Auditorium. I can't lie, I was very nervous as I walked in & saw the room

The Auditorium.
I can’t lie, I was very nervous as I walked in & saw the room

Although I have spoken publicly about my cancer story before (you can see a pervious post on that here) I have never spoken in front of people before, let alone 200 scientists but my contacts at Cancer Research and GSK could not have done more to make me feel at ease.  To be honest I was just so excited.

I’m pleased to say that the talk went really well.  I even managed to make them laugh a couple of times (with me/at me, who knows?!)  Formatted like an interview, the interviewer me did a fantastic job of making sure everything was covered, getting to the bottom of the story and keeping me on track – even making me feel like it was just the two of us having a chat.  I did suddenly became nervous at the end that no one was going to ask anything during the Q&A session but thankfully they had lots of interesting questions and were all SO kind.  It felt extradonarily good to share my story and to know that it was possibly making a small difference in the future of oncology was a total buzz.

When the room was full. That tiny dot at the very front on the left, is me!

When the room was full.
That tiny dot at the very front on the left, is me!

A number of delegates spoke to me at the end saying how moving it was to hear my story, not just because they are scientists but because cancer is something prevalent in their lives and families, meaning it had been a help on a personal level to understand a little better what their loved one may be going through.  Again this just confirmed for me how we all need to just keep talking about cancer and that I am going to continue to do so.

The real irony is that the GSK employees were thankful to me for sharing my story with them, when actually I wanted to thank them.  I don’t think anyone in the room will realise how much they did for me, my inner strength and confidence.  I’m sure that nothing will make having cancer ‘worth it’ but to be able to turn such a negative experience into a positive through doing something I have always loved the thought of doing – public speaking and writing – and having the potential to make a difference through engaging with scientists and other projects raising money and awareness for Cancer Research UK, is as close to being ‘worth it’ as I think it can get for me.