What Do You Wish You Had Done?

Any Human Heart, Cancer & Me, Writing & Blogging

I knew my surgery for cancer was going to be extreme and dangerous and I was genuinely worried I was going to die.  I bought one of those – this is my life books to fill in so my children (who were only 2-years and 11-months at the time of my surgery) would have some of my memories should my worst fear be realised.

One of the questions was ‘what do you wish you had done?’  Quite poignant at the time, I was only 32, thinking about things I wasn’t going to get to experience was not easy, but there were three things I wished that I had done;

Gone to University to read Literature and Writing.

Travelled more.

Become an author.

It can be a strange time after cancer because everything is exactly the same, yet everything has changed.  Most women I have spoken to go through big internal changes after getting the all clear.  I have described it to people as being like a ‘shedding of the skin.’  You want to peel away the past, shake off anything that is pre-all-clear.  Obviously you don’t want to shed everything.  There were plenty of things that were lovely about my life before cancer and after… but how do you marry those two things up?

It has become a bit of a cliché that feeling that you have cancer and suddenly realise what and where you want your life to be, but I think it is a cliché for a reason.   You will never have your life put so acutely into perspective, than when you have a full on face off with your mortality.

For me, moving forwards after cancer, I knew that Purchase The Fabulous Woman's Guide Through Cancer on Kindle or in Paperback here!I did not want to answer the same question in the same way when I was 80!

So I applied to University (which I started part-time in 2013) and agreed with my husband we would try to visit more places.  I knew I wanted to help others who are affected by cancer, which led me to start my blog and fulfil an ambition of becoming an author by writing my first non-fiction book, The Fabulous Woman’s Guide Through Cancer.

I often joke that most people realise they want to spend more time with their family, where as I decided I wanted to spend less time at home, but you know, whatever works!

What about you?  Any changes for any reason?  Let me know x

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When Nicola met Channel 5 News

Any Human Heart, Cancer & Me

I am so thrilled that I was able to be involved in this interview with Channel 5 News, mainly because it is this exact issue that made me want to share my story in the first place.  I have written about the years of difficulty I had getting referred by GPs here.

I was asked to take part in this interview because of research published in the British Medical Journal on thursday that GPs in the UK are less likely to immediately refer people with possible cancer for tests than those in comparable countries.  UK-based GPs are least likely to refer quickly and UK cancer survival is lower than each of the other countries examined except for Denmark.  Admittedly I have never been to medical school, but I assume I am not the only person to whom this is blazingly obvious.

The fact I hate seeing myself on film aside, I thought Channel 5 did an amazing job putting this together.  It really gets to the heart of what so many cancer patients I have met, feel happened to them.  Being dismissed when they know something is wrong.  So remember, if you know something is wrong, do not take no for an answer and get that referral!

In the meantime, happy watching.  Nx

New figures suggest doctors in England, Wales and Northern Ireland are slower to refer patients for cancer tests compared to those in other countries, like Australia and Canada.Dominic Reynolds meets a young mother who’s lucky to be alive after waiting five years to be diagnosed with bowel cancer:
Posted by Channel 5 News on Friday, May 29, 2015

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Coping Strategies – Cancer When You Have Children

Any Human Heart, Cancer & Me, Family Matters

I was recently emailed by a lady asking if I had any specific coping strategies that I could share for attempting to fight cancer and be a present parent for your child, that you want to be the best mum ever for?

It really got me thinking.  I don’t know if you can fight cancer and be an ever-present, best mum – well I mean, I’m sure you are the best, but maybe not in the all-encompassing way you envisioned.  It’s hard, there are no two ways about it.  I had such a clear idea what I thought motherhood was going to be and cancer was robbing me of it.

I’m not sure that I did cope, it was a constant and evolving situation and you just keep trying.  But, here are a few things that I learnt along the way.

Keep things in perspective.

When I used to get upset about not being with the children for certain things, my husband used to say  “the kids don’t care if you are there the first time they roll over or whatever, they care if you are there on their first day of school or get married, but even if you miss those… They only really care if you are alive.”  I used to try to keep that in mind when I felt I was missing out because it’s so true.

Getting to be at home with my baby girl

Getting to be at home with my baby girl

Carve out some special time.

When I was having chemotherapy or was bed bound, I used to get the children in to my bed and read them their bed time story.  Or go and snuggle up with them on the sofa whilst they had TV time.

Little one’s love routine so if there is one part of the day, no matter how tiny, that they can know you will be involved in, I think it works quite well.

Bonds are built on more than time.

The bond with my daughter was something I worried about as she was only three months old when I was diagnosed.  When you are pregnant you are told about all these things you have to do with your baby, otherwise you are basically stamping all over their childhood and any chance of you bonding with each other, but it’s not true.  My daughter and I have a wonderful bond.  We love each other eternally and no amount of being in hospital and chemotherapy has changed any of that.

Plus you are going through their childhood with a determination to live for them that most other parents will never experience.  So don’t panic if you aren’t around as much as you planned because your bond will still be the same.

Give Yourself a Break

It’s not much I know, but hopefully it will help.  Most importantly, give yourself a break and just enjoy all the moments that you can.

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Does Cancer Ever End?

Any Human Heart, Cancer & Me

If you break your leg, it’s annoying but it’s cast, it heals, then it’s over.  Becomes nothing more than a dinner party story about your teachers not believing you broke your leg playing football at break time and having to hobble about on it in huge amounts of pain all day (my husband, not me).

But I’m increasingly feeling like I will never get the joy of talking about cancer in the past.

This week I have been in hospital. One of life’s irony’s is that having the type of treatment I had for cancer, put me into early menopause, which has thrown my internal pH balance off, which means the internal scar tissue caused by my surgery to remove the cancer, can’t heal properly, which means the scar is growing abnormal cells, which will turn cancerous if not removed.

Basically – my treatment for cancer is trying to give me cancer!  Excellent.

I generally stay quite positive about my treatment, but I can’t lie, this has really got me down. I just can’t be arsed quite frankly.

I don’t want to go back to hospital, I don’t want to be given what is essentially a long and painful smear and I definitely don’t want to hear about cells doing something they are not supposed to be doing…. again!  I have had the results and the cells are benign, which is great, but still – why won’t they just do as they are bloody told and stop causing trouble.  I actually have serious déjà vu writing that last sentence as I must have said it about fifteen times to my children this morning.  But I digress…

I do think a very difficult post-cancer treatment concept is the idea of it never quite being over.  I think no matter how in the back of your mind cancer is, it is still there and the tiniest thing – like a hospital appointment – can bring it all rushing to the front again.  I am struggling to get used to that and there are points when running away to a remote island that is no where near a hospital seems seriously appealing.

Logically I know that it is obviously for the best that I am in hospital regularly with doctors keeping a close eye on me so that cells can be removed before they even have a chance to turn cancerous but emotions aren’t always logical are they?  Mine definitely aren’t, but maybe that’s just me.

I will however not be running away to an island – I shall stand tall, keep moving forward and continue to show cancer and my troublesome cells the finger!

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The Problem with NOT Losing Your Hair When You Have Cancer

Any Human Heart, Cancer & Me

Cancer, chemotherapy, hair loss.  Standard.  These three things appear to be inextricably linked which is strange because it’s not actually true.

There are hundreds of types of chemotherapy, all with different side-effects and hair loss is not always one of them.  Some chemotherapy’s cause heat in the body, which causes the hair follicles to open and the hair to fall out.  Some chemotherapy’s cause cold in the body meaning that doesn’t happen.

So why do people always connect the two?  I think it is because people have the ‘heat causing’ chemotherapy when treating breast cancer.  As Breast Cancer is the most common in women and the poster-child of cancers, this has become the ‘normal’ image we all accept and expect.

These ‘cold’ chemotherapy’s come with their own additional side effects, mostly in the form of nerve damage.  Your nerve endings become so damaged and hypersensitive to cold, it meant that I couldn’t even walk down the chiller aisle in a supermarket because of the painful reaction in my nerves.  If it was cold outside, I would be in pain.  If something was cold to touch, I was in pain.  I could not drink cold or room temperature drinks as the pain the nerves in my throat was unbearable and made my throat feel like it was closing causing a gag reflex – warm drinks were fine thankfully.

Of course you still get all the added, expected side effects like nausea, sickness, fatigue, digestive problems, insomnia, etc…  We all have these joys in common.

The problem with not losing your hair when you have cancer is that people don’t realise you have cancer.  Even when they know you do have cancer, it’s like they forget.  It can be genuinely shocking.  How you feel and how you ‘should’ look are poles apart which somehow creates a disconnect to the reality.  If I had a pound for every time I heard “but you don’t look ill???”  It makes it even harder to acknowledge the truth of what is happening, for others and for yourself.  Sometimes I just wanted people to acknowledge how crap I felt without me having to explain

“I am far sicker than my long flowing locks allow you to believe.”

I remember someone saying “How come you haven’t lost your hair?  Obviously your chemo isn’t very strong.”  Cue internal crying and tending to the metaphorical kick in the stomach, whilst outwardly I tried to explain the differences.

I am thrilled that I didn’t have to deal with losing my hair.  Obviously I can’t imagine truly what ladies go through when they lose their.  I would most certainly be devastated, feeling like I had lost an irreplaceable piece of me.  But just because someone doesn’t ‘look’ a certain way, doesn’t mean they aren’t still fighting their fight.

That probably goes for everyone and everything actually!

Fighting-the-batle-of-life

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International Woman’s Day

Any Human Heart, What's Happening?

Happy International Woman’s Day!  To celebrate this wonderful day I thought I would take a moment to mention just a few (there are many many more but that would take forever) of the fantastic women have made me the woman I am….

My mum and I getting ready on my wedding day.

My mum and I getting ready on my wedding day.

My Mum

Possibly predictable, I know, but she has sculpted me into the woman who I am in so many ways.  My mum’s positive attitude to life and death became even more inspirational when I had cancer.  I see so much of my mum in the way I’m raising my children and my most my strength comes from my mum (and my lovely dad, but I guess that comes on Fathers day?!)  Even 6 years after she passed away I can hear her when I question what I am doing, encouraging me to do better.

Ms Nicola Fernhead 

Ms Fernhead saved my life.  Literally.  She is the amazing surgeon at Addenbrookes hospital who oversaw every aspect of my cancer treatment and performed my twelve-hour lifesaving operation.  She stripped me down and put me back together again (physically and spiritually I think)… and added an extra bit!  To be able to identify someone who is one of the major reasons you are actually alive is a bizarre but very wonderful thing.

Polly Nobel 

I knew when I got through cancer I was going to write (and write and write) but I remembering being at a loss of where to start.  Then I found Polly Nobel’s website Polly’s Path.  A wealth of information about healthy living and being a twenty-something woman living with terminal cancer.  Although we had some differing views on life with cancer (and diagnosis), it was so inspirational and starting helping me picture what I wanted to achieve with this blog and my non-fiction writing.  I had the joy of meeting Polly in 2013 at an event and she was just as inspiring on real life.  Unfortunately Polly died last year but her legacy lives on.

The lovely Thalia Skye

The lovely Thalia Skye

Thalia Skye

My first paid writing job was from this amazing and inspirational lady, Thalia Skye, and the fantastic website that I contribute to through Coloplast, My Ostomy.  It truthfully is my dream job and I am SO grateful to Thalia for giving me the chance and teaching me so much about vlogging, social media but even better than that… Thalia has taught me so much about my own stoma!  From practicalities to realising how much I appreciate having this life saving bag and the strength to keep talking about it and raising awareness about life with a colostomy / iliostomy of how boringly normal life remains!

Dr Anna Tripp

My personal tutor at university and the woman who agreed to take punt on a thirty-something mother who was desperate to finally fulfil a dream of reading Literature and Writing at university.  It’s one of the best decision’s I have made in my life and I can’t thank her enough for seeing enough of a spark that she would take a chance on a woman with absolutely no academic level 3 qualifications.  She rocks!

My sister and my son

My sister and my son

My Sister

Where oh where would I be without my sister!  Sisters (especially one like mine) are the best thing ever.  An absolutely driving force in my life that keeps me moving forward no matter how much I want to give up and stop and who shines the brightest light in my darkest of days.  I quite simply would not be here without knowing that my sister is well and truly in my corner.  And now my kids get to enjoy having the best aunt in the world.  I love this woman!

There are plenty of other women in my life who have done more for me than words can say.  In particular my wonderful female friends and all the women in my family – they are all strong wise and wonderful.  From the little things to the massive things you have all built me into who I am and for that I am truly thankful.

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Cancer, the Benefit of Hindsight and the Lowest of the Low

Any Human Heart, Cancer & Me

A lady wrote to me recently praising my positive attitude to having cancer.  This lady also went on to say that her son had cancer and that he was in a very negative place and she had tried encouraging him to read my blog to gain a different perspective but that he wasn’t interested and so fearful for the future and asked if I ever felt like that?

I wrote back saying YES!

But her question made me think how important it is to discuss the lowest lows that you go through when dealing with cancer.  I have a wonderful friend who stayed so positive throughout her whole treatment.  She had breast cancer and has been all clear for years but looking back she says she never allowed herself to think the worst.  She felt remaining positive was integral to her getting better and she never allowed negativity to creep in.

I did not feel like this.

I felt utterly lost in the darkest depths of an abyss.  Like one of those little sea-creatures that lives in a place so dark its blind and has no idea which way is up or down, that was me.

I honestly think that the reason that I am able to speak about cancer so positively now is because it all turned out fine and I’m cancer free.

People generally (myself definitely) have an incredible knack for looking back on experiences and extracting meaning and positivity from them.  That doesn’t mean the ‘meaning’ was obvious at the time.  Or even there necessarily.

There were points when all I wanted to do was hide away.  I didn’t want to see people, speak on the phone, anything.  Treatment and bed, that was it.  At some points that was all I was physically able to do but at other points, it was a very useful excuse.  There were times when I would tell family not to come round and they would anyway.  I must be honest, I usually felt a lot better for seeing them and having a chat about whatever my fears, or purposefully choosing not to talk about my fears.  As I started to recognise this pattern, I tried to keep plans, or even invite my dad or sister round, which did help.

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In hospital about a week after my operation.

The lead up to my twelve-hour operation was mind-crushingly hard.  I was petrified I would go to sleep and never wake up.  I was so scared, I couldn’t even discuss my fears with anyone, I couldn’t say them out loud.  In the end I had to push myself to tell one of my closest friends how scared I was because I wanted her to be able to pass on messages to my husband and children should my worst fear be realised.  I don’t think anyone will understand the physical internal pain caused by fear that I went through in the weeks between radiotherapy and my operation.

My lowest of the low actually came towards the end of my treatment which might sound strange – it certainly did to those around me.  I reached a point where I couldn’t fight anymore.  I had already had three months of chemotherapy, three months of radiotherapy, two operations, followed by weeks in hospital.  The thought alone of going back to have another three months of chemotherapy, knowing how sick it was going to make me, was too much for me to bear.  I was so physically and mentally tired, I didn’t have any more fight left in me.  People kept saying ‘but you’re so close to the end,’ but all I could think was ‘I can’t have another three months of chemo.’

I reached a point where I would rather give up completely than even thinking about keeping going.

I spoke to my oncology nurse about it and she was very understanding.  I think sometimes in cancer care we think our reactions unique, but clearly nurses see this all the time.  She advised antidepressants to give me the boost that I needed to get me through the last few months.  Previously I had been quite ‘anti’ antidepressants but at that point, I was on so many tablets counteracting side-effects from the cancer and treatment I figured what’s one more tablet a day?!  Plus I acknowledged, I needed extra help.  The antidepressants did help and got me through the end of my treatment.  I’m not suggesting antidepressants are the answer for everyone, but for me they were and still are.  I am sure there are more examples of feeling lost that I could give but I’m sure you get the idea.

I must admit I have felt quite emotional writing this post.  Remembering and feeling that long dormant fear in the pit of my stomach.  But if you feel this way, or have a loved one who does, know that it is inevitably part of the process.

Me, walking with my family the day after I found out I was Cancer Free!

Me, walking with my family the day after I found out I was Cancer Free!

At the end of the day, I have turned out fine!  In every way I think my life is even better than before.  I have done things I wanted to do my whole life but never had the guts to do before (ironic as it was my guts that had cancer and are now gone – a little bit of ‘cancer humour’ there); like going to University and writing this blog.

One way or another the moment that you /your loved one is in will pass, but in the mean time be kind to yourself / to your loved one.

 

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The Anti-Bucket List 2015

Any Human Heart, The Anti-Bucket List

If you have been following me for a while you will probably be aware of my Anti-Bucket Lists but if you haven’t or need reminding you can read all about it here but basically, when I was having treatment for advanced Colorectal Cancer I decided that when I got better I would flip the traditional ‘things-to-do-before-I-die-Bucket-List’ idea and came up with ‘The Anti-Bucket List’… these are things I am going to do because I’m alive.

My list for 2014 was;

Holly at her first Ballet performance

Holly at her first Ballet performance

  • Go to a fancy Horse Race – My lovely hubby took me to Royal Ascot and it was everything I hoped, including seeing the Queen and Prince Harry.  You can read about it here.
  • See a Ballet at the Royal Opera House – It wasn’t at the Royal Opera House but I took my daughter to see her first ballet, you English National Ballet performing Swan Lake in Milton Keynes and it was amazing and a very special mummy-daughter moment.
  • Visit Harry Potter world at Letchworth Studios – I ended up going to Harry Potter world at Universal Studios instead!!  Oh yeah!! I was literally like a kid at Christmas.
  • Take part in Cancer Research’s Colour Run – They didn’t do one last year 😦
  • Go somewhere I haven’t been before – Benhavis in Spain – if you are in the area, it is beautiful and well worth a visit.

My Anti-Bucket List for 2015;

  • See the Book of Mormon – been meaning to see it for ages.
  • Visit Harry Potter at Letchworth Studios – going to Florida has made me want to visit even more.
  • Visit somewhere new – This was on my list last year but I think this will remain on my list forever.
  • Do the Tougher Mudder race for Cancer Research. Am hoping this will be achievable by the end of my #100ActiveDays?!
  • Visit a new Spa – sometimes you just need a bit of a break and I know that I do now so a Spa weekend will be just what the doctor ordered… and I think I could get away with considering it research?! 🙂
  • Organise a family get-together for no reason.  I love my extended family and so rarely get to see everyone altogether outside of weddings. Christenings, funerals etc…  So I am going to try to organise a ‘Just Because I Love You’ get-together.
  • Add a lock to the Love Lock Bridge in Paris – sounds cheesy but fun, making our mark on Paris forever.

As always I am looking for new inspired ideas so if you have any, please leave a comment below and let me know.  I had some great ones last year and as a result did even more cool stuff, would love that again.  I would also love to hear what is on your list so let me know.

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Post-Cancer Breakthrough Moment!

Any Human Heart, Cancer & Me, Journey Back to Health, What's Happening?

It can be strange when you are going through something quite massive – but I am sure it is not unique to me and can be applied to any situation – that sometimes the biggest breakthroughs or realisations (good and bad) can come out in the strangest of ways.  Like after my mum died, I didn’t really cry at any of the big things I was ‘meant to’ cry at, like her funeral, but when someone would make it through to live rounds on X-Factor, the first thing they do (after hugging Dermot) is call their mum and that would just set something off in me.  The fact that they could ring their mum and tell her that something amazing had happened to them and I couldn’t would have me in tears every time.  Bizarre but true.

During my last 3 month cycle of chemotherapy a friend came to visit me I asked how she was and she said “we are all fine, just plodding along, nothing to report really” and I remember being flabbergasted.  I couldn’t even think of the last time I had given an answer like that.  I remember almost crying to my husband that I wanted to tell someone that I was ‘plodding along’.  No one had cancer or was dying or being born – we were all just happily going on with our lives.  After agreeing he would like that too and a few reassurances from hubby that our time would come I left it, unconvinced.

A friend just text asking how I was and this is exactly what I put…

We are okay thanks, just ticking along really.

Probably sounds ridiculous but I feel like I just had the most amazing post-cancer breakthrough moment.  Finally I feel like things are on a slightly more even keel and not full of drama.  I mean don’t get me wrong, life is still life, but for this little sliver of time, everyone is all good, we are all just plodding along and there is nothing really to report.  To be honest, it’s probably been like that for a while but knowing that I have finally reached that point in my own head feels amazing!

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One Lovely Blog Award

Any Human Heart, What's Happening?, Writing & Blogging

I was so thrilled to be nominated by a couple of people for the One Lovely Blog.  A very big thank you to Live Now Dream Later , Rectal Cancer My Arse and Stepping 2 your Dreams for the nomination which I accept.

The point of the award is to give a platform to different blogs by giving bloggers a chance to nominate other blogs they enjoy.

lovely-blogThe One Lovely Blog Award, recognizes blogs that are considered to be “lovely” by the fellow-blogger who chose them. This award acknowledges bloggers who share their story or thoughts in a beautiful manner to connect with their viewers and followers. In order to “accept” the award the nominated blogger must follow several guidelines.

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  • Thank the person who nominated you for the award.
  • Add the One Lovely Blog Award logo to your post and/or blog.
  • Share 7 facts/or things about yourself.
  • Nominate 15 bloggers you admire and inform nominees by commenting on their blog.

 

7 Random Facts About Myself

  • I have two middle names – Jane and Ballantine.  Ballantine was a family surname that would have died out when my great-great-great Grandfather (something like that) only had daughters.  So his daughters gave it to their children as a second middle name and the tradition has continued with every generation ever since, including my children.
  • I passed my driving test on my 4th attempt!  Yes, 4th!  Strange because I am an awesome driver.
  • My ideal evening includes reading magazines in a super hot bubbly bath.
  • I actually have a bit of a magazine addiction and buy a ridiculous number monthly magazines, my favourites being Ideal Home, Red and Good Housekeeping… and Woman and Home…. and…
  • I am the eldest of 3 siblings although people always assume my sister is older.
  • I do most the things I always swore I would never do when I had my own kids – like letting them watch Peppa Pig on my phone in a restaurant.
  • Harry Potter is and always will be my literary true love.

The 15 Amazing Blogs That I Nominate are