The Silent Cancer Side Effect – Fatigue

Any Human Heart, Cancer & Me

Just to be extremely clear, fatigue is not the same as being really, really, really, tired. It is more than that, and takes hold of your whole being, physically and mentally. Anyone who has had children will probably know what I am talking about, right?  But it’s permanent.

Fatigue takes a toll both physically and mentally. If you are anything like me you are completely hopeless after a bad nights sleep. With fatigue it feels like that all the time, times a million.

Even simple activities, or activities that you wouldn’t normally consider taxing like watching a movie or reading a book can suddenly feel like way to much and like it would require far too much effort.

Signs Of Having Fatigue

  • You don’t feel anymore restored or awake even when you have had a good nights sleep.
  • You feel like nothing can restore your energy.
  • You are often unable to finish tasks, even when you desperately want to achieve them.
  • The above point is usually coupled with a severe lack of concentration.
  • You may also find that you suffer with memory loss as a result.
  • Physically, the lack of energy can mean it is physically draining to undertake the simplest of physical activities.
  • There may even be loss of motor skills.

I really can’t stress enough to severity of fatigue. And, it’s beyond annoying!

You want to be up and about, trying to live a normal life but feel unable to do anything, it is infuriating! Even more annoyingly it can last for years after cancer treatment has finished.

imagesFor me, fatigue was the worst the years after I had cancer and finished my treatment. I think it was a combination of my body healing, riding itself of an unbelievable amount of chemicals and poisons and getting over the emotional side of everything that I had just been through. Hardly surprising but still unforgivably annoying.

I really wanted to make a point about the fatigue because it so easily gets overlooked. Even when you are the one with cancer, I think it is hard to identify it within yourself. Energy levels will fluctuate too much from one day to the next when you have cancer and/or fatigue that one day you will think your fine and the next day you are on the floor and I think the unpredictability of it can be equally hard.

The intensity of the fatigue will inevitably vary from person to person so just because I experienced it quite severely doesn’t mean that you (or your loved one) will, but I would keep an eye out for it and just be extra sympathetic to yourself if you aren’t able to do things as often or as quickly as you hoped.

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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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Who Should Decide Your Cancer Treatment?

Cancer & Me

The story of Ashya King has been as shocking as it has been upsetting and has stirred up all sorts of thoughts and feelings.  Cancer treatment is something that I have looked at from different points of view.  Not only as someone with an advanced cancer that needed and received treatment, also as the daughter of a woman who had and then refused cancer treatment and in all honesty, it comes across like a bit of a minefield.

Back in my blissfully ignorant-about-disease days, I believed that cancer was cancer and treatment was treatment.  Now I know that is far from the truth.  There are numerous variations of both and combination options, and it’s essentially down to your doctor to decide the best combination for you, based on your illness, their experience and resources available.

I originally had a surgeon who wanted me to have the ‘standard’ colorectal cancer treatment plan.  I then saw another surgeon who wanted further testing.  As a result a much more extensive treatment plan was given to me.  I say ‘given’ because it was.  There was no discussion just this is what we are going to do.

Since recovering I often question, what if I had stayed with that original doctor?  I only changed because my brother-in-law worked at a different hospital, not because I was expecting better treatment somewhere else.  If I had stayed with the original surgeon and his plan, not all the cancer would have been removed and I would have only had half the amount of chemotherapy I ended up having.

As time went on other variations on my treatment plan popped up.  Should or shouldn’t they remove my womb, was it genetically problematic, the order of treatment, different doctors held different opinions.  It started to seems to me that cancer treatment is on a spectrum ranging from a very well-educated and resourced opinion to a blanket standard.  I have no doubt that I was getting the best and right treatment for me.  But what if you aren’t?  What if you believe there is a better or different way?  At what point do you stop trusting what you are being told and go out on your own?

Just a few of my Cancer Drugs

Just a few of my Cancer Drugs

After my operation I did not regain bladder function and was still using a catheter weeks later.  My surgeon explained the bladder is a very sensitive organ that doesn’t like being pulled around (I love this, makes it sound like stroppy teenager), and given time it would return to normal.  In the meantime I was referred to a urologist so I could learn how to insert a catheter at home.  I returned for my follow-up a few weeks later, believing it was just to check if I was getting on with the catheter’s OK, when they said they wanted to run a series of heavily invasive tests with a view to operate and create a second stoma for my bladder.  WHAT!  Firstly, one stoma’s enough.  Secondly, this went against everything I had been told up to then.  I was still having chemotherapy, still recovering from the 12 hour surgery I had only a few weeks before.  The thought of another operation and another stoma served as such an incomprehensible blow.  I asked if it would be worth waiting to see if I regained function as I had been told I would.  She was very matter of fact, this was her recommendation.  No discussion, no options.  I was devastated.

So what did I do?  I ignored it.  Not something I would advise with health conditions, but I did speak with another doctor who said they didn’t agree (alleluia).  She thought that I should wait, give my body a chance to heal.  I knew straight away in my heart that it was the right decision.  I did regain full bladder function over the coming months so in this case it was right, but what I did find shocking was the way I was cut off by urology.  I wasn’t following their treatment plan so that was that.  I never saw anyone in urology again.

Since having cancer I have met with some fascinating people who work in the cancer field.  Some have been surprised that I wasn’t aware of the treatment variations available.  I had no idea there were different kinds of cancer drugs with new one’s being developed and trailed all the time.  In my case, it matters very little.  I am happy with the decisions, but what if you’re not?

Should we look at doctors as all-knowing beings and be forced to place our health in their hands no matter what?  Even after going through cancer, I still only understand the tiniest fraction of the science, so surely people who have trained specifically in the illness know best?  Or should we be involved as patients, guided by but not bound to doctors expertise?  These are not rhetorical questions, I am genuinely asking because your health is to important not to be discussed.

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Just Keep Swimming – Swimming with a Colostomy

Colosto-ME

The thought of swimming seems to be something that a lot of ostomates struggle with and, of course, I understand why. It was something I was very worried about but it just sort of happened.

A friend asked me to join her on a trip to an amazing spa close to where we live to celebrate and relax after finishing my cancer treatment, which I leapt at, paid nearly £200 for (I know, but I had just survived cancer, totally deserved it), then went into a complete hyper-melt-down-type-panic over. How on earth I was going to do this with a colostomy?

This was only about 6 months after the surgery that gave me my colostomy and two months after my final bout of chemotherapy had finished, I was still wearing balloon sized clothes. There was no way I could wear a swimming costume – the bag would show through, it would become unstuck and float around the pool, and if that didn’t happen, the large neon sign flashing ‘this girl has a colostomy on’ above my head was bound to give it away!

Read More……….

Taking a Swim!

Taking a Swim on Holiday!

But I Deserve Chocolate…. Don’t I?

Cancer & Me, Journey Back to Health, Uncategorized

I have always been addicted so sweet things.  I love pretty much anything covered in sugar, I add one & a half sugars to my coffee (that’s if I’m not drinking a massive vanilla late from Costa) and I always drink coca-cola… daily, like ALL the time.  Love it.

But when thinking about the relationship between my thought pattern & my sweet-tooth yesterday something did occur to me.  I think I deserve it.  Literally.  I think that I have been through so much crap with the cancer & everything that I deserve these little treats.  I can actually identify now that it became really bad, bordering on obsessive behaviour that I had to eat a bar of chocolate or tub of sorbet every evening towards the end of my cancer treatment & it is a ritual that has become habitual so now I can’t imagine giving it up.

Whilst thinking about it I realised how much I need to change my point of view.  Actually filling my body with horrible toxins isn’t something I deserve (no matter how good they taste), no one deserves that.  What I do deserve is to have the healthiest body known to man.

This is something I discussed with the fabulous cropped-long-logo-small-jpegwhen I met with her.  She said that it is to be expected & I shouldn’t be hard on myself but I was making the right steps & as long as I continued to make good choices, things would only get better.

One of the best things she said was that she’s not going to tell me to give up anything (YEAH).  Lauren said that she didn’t want to tell me not to eat something, then all I am going to do is want to eat it, feel like I’m on a diet & think I can’t do it & give up.  Instead Lauren wants me to focus on all the things that  I should be including in my diet & believes that the more good I start eating, the more the bad stuff will start to fall away.

179640_10153017930745153_1137577144_n

So what’s the good stuff?  Come on, you know the answer to this, we all do… more fresh fruit & vegetables.  Well an Alkaline diet is ideal (more about an Alkaline diet in a future post), as it gets your body’s system back in balance.  Particularly good as a cancer preventative diet.

How am I doing?  Pretty well.  I’m not going to lie, I have still have some Coca Cola & Costa coffees but less than normal & I have all kinds of fab things going in my diet now…. Salmon Salads instead of Spag Bol, Flax Seeds & Goji Berries sprinkled on my organic porridge oats for breakfast instead of.. well nothing, I only used to have coffee for breakfast.  My blender & Juicer have never been used so much.  I have even been making Smoothies & Juices that I can even get my son to drink so that’s a double fantastic (I will post some recipes on her shortly as well).

Incidentally, if you have any good smoothie or juice recipes, please leave a comment & let me  know them, the more super food ideas, the better!

Wishing you love & health

Nicola xx