International Women’s Day…Don’t insult us…

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Now, I’m not against celebrating women, our struggles, successes and how far we have come (and still have to go); but I do take issue with this bizarre need to have one single day a year to acknowledge us.  I actually find it quite insulting on so many levels, rather than celebratory.  And don’t get me started on Mother’s Day either…that’s equally as insulting.

I don’t need a single day a year to recognise the women around me who inspire me each and every single day.

There’s the incredibly brave and young fellow cervical cancer survivor who will never be able to carry her own child, and yet still keeps going.

The enormously strong mother who continues to fundraise for sick kids and work on a busy maternity unit despite her own miracle baby sadly growing his wings at just 8 months old.

The determined single woman fighting tirelessly to get the law changed so that her and other single women can legally become parents using their own eggs via a surrogate and a sperm donor (I can’t even believe that this is even an issue in this day and age!)  She also happens to be a fellow cervical cancer survivor.

The courageous mother who grabbed her kids and fled her abusive ex partner, risking her own life.

And finally the resilient fellow warrior who takes a daily kicking from their own special needs child, and yet gets back up each and every time despite their own chronic health issues.

These are the true women who need celebrating and I feel truly honoured to have them in my life, each and every day.  Not once a year.

 

Inspire

 

Amy Griffiths, Well Being Freedom Services Ltd ©

To Love the NHS…???

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So last week in South Wales, we saw the worst snowfall in a very long time, with a RED warning issued from the Met Office. This meant that schools, council offices, shops and businesses completely shut down & we were advised not to drive.

BUT hospitals didn’t have the luxury of being able to close their doors.  Patients still needed to be treated and fed, buildings still needed to be cleaned.  Patients out in the community still needed to be visited, and GP surgeries open regardless.

Now, I think it is fair to say that I haven’t had the perfect love affair with the NHS!  I’ve worked for the NHS; seen the best and very worst.   As a relative I’ve seen loved ones both saved and neglected.  As a patient I’ve had some of the most amazing care you could ever wish for.  I’ve also been mis-diagnosed and neglected, causing life changing and permanently damaging effects.

HOWEVER, over the past week I’ve been grateful to see the passion and dedication of many good NHS workers first hand. 

Family members and close friends are nurses & have put their patients above their own safety & family by travelling into work at all costs.

I’ve see my partner working long hours & giving up his own weekend to drive NHS staff to hospitals and around the community in a 4×4.  And then he has worked crazy 18 hour shifts to help manage the crisis that hit the area immediately after the snow began to descend.  From a selfish point of view I hated his ‘job’ during this time as it meant he wasn’t around to support with something quite significant at home.  But on the flip side seeing his passion for the cause made me love him even more.  The NHS need more people like him.

So whilst Facebook was full of selfish moans of shops being closed or running out of food, just spare a thought for all the dedicated NHS workers (domestics, caterers, porters, nurses, doctors, paramedics, managers to name just a few!) that put their own lives at risk travelling through awful conditions to ensure patients didn’t suffer!

Thank you

 

Amy Griffiths, Well Being Freedom Services Ltd ©

 

Well, I REALLY didn’t mean to do that…..

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But I am feeling pretty smug that I did ha!  But I really didn’t mean to at all!

You see two days ago I had a small surgery and was meant to be ‘taking it easy.’  So I told myself I was only going to do a small run down into town and back (I run most Saturday mornings to help with my lymphoedema and Ehlers Danlos Syndrome).  I haven’t felt that well the past few days, even went to bed at 8pm last night totally drained and in pain.

But something happened this morning before my run which I won’t bore you with, but let’s just say it released too much adrenaline into my system (a quirky benefit/punishment of having EDS) and once I was running with my favourite tunes on in the pissing rain and wind, I just couldn’t stop.  I love how ‘free’ running and music makes me feel, everything else just kinda fades away.  It’s a very therapeutic feeling; one I only ever feel when I am running, dancing or singing.  Its irreplaceable. 

You will know from my previous blogs how hard I have found my fitness journey due to my health issues – if you haven’t read them you can find them here and here.  Never in a million years would I have ever thought I was capable of doing what I did today!  So I guess there is a lot to be said for running when you are feeling emotional 😉

I am sooooooo incredibly proud of myself, and not in a bigheaded way but in a fucking grateful way.  Grateful that I am still here after cancer, grateful that my EDS and lymphoedema haven’t ruined my life, grateful to be a strong role model to my babies, grateful for good music!  But fuck am I in agony now.  My legs are wrecked and my stomach can’t make it’s mind up what it’s doing.

I am expecting to go into a full blown painful chronic illness flare up over the next few days, but you know what since cancer I have learnt to live life like it’s your last day on earth.  And I don’t mean that in a morbid way.  But I was genuinely given a second chance at life and I have absolutely no intention spending it festering away!

 

As John Cena says…….NEVER GIVE UP!!!

 

 

Amy Griffiths, Well Being Freedom Services Ltd ©

The Dummies Guide to Enjoying Christmas When Your Cancer May Have Spread…

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So, I’ve thought long and hard about writing this blog; partly because of keeping my ordeal very private over recent months; partly due to old memories being re-lived; partly because I want to protect my babies; and partly because I am awaiting further surgery.

BUT January is Cervical Cancer Awareness month, and I am very passionate about encouraging as many women to get their smears tests done as possible, and for society in general to appreciate the long term consequences the illness brings to YOUNG women – YES CERVICAL CANCER IS A YOUNG PERSON’S CANCER and completely destroys the life young women dreamed of ever having.

So here I go……

Around 3-4 months ago I began suffering extreme pain.  The type of pain I walked around with for a good 18 months a few years ago prior to my cervical cancer eventually being picked up via a routine smear test (this was after all my CLASSIC symptoms being dismissed by medics!) 

I tried to ignore the pain the best I could, despite being secretly panicked.  However it eventually began to become unbearable and I gave in and telephoned my cancer nurse who made me an emergency appointment with my Oncologist.

My Oncologist was wonderful as always and could see I was in pain and ordered me an urgent MRI scan.  This was then followed by an urgent laparoscopic surgery on 11th December (exactly three years to the date since my original cancer surgery, so you can imagine that this was an incredibly difficult day for me).

The surgery involved a general anesthetic, four abdominal incisions, probes and a camera to effectively ‘dig’ around my insides to check if my cancer had spread, and also see if there was anything else which could be causing the pain.

Before being discharged from hospital, my amazing Oncologist came to see me armed with some pretty gross but fascinating photographs of my insides!  He explained that although he couldn’t see any obvious reoccurring tumours, he had taken some samples for testing and that I would have a three week wait for the results of.  Shit.  That was any small bit left of my Christmas cheer thrown firmly out of the fecking window.

He also found quite a lot of significant adhesions from my previous surgery which could explain the pain – basically certain organs in my body have decided to fuse to places they shouldn’t have.  Great ‘ey?  Having Ehlers Danlos Syndrome (a rare genetic connective tissue disorder) had dramatically increased my chances of adhesions and I am deemed ‘high risk’ for any type of surgical procedure.  Gotta love ya faulty inherited DNA 😉

I won’t lie (gosh, I sound like Nessa!); the past month has been incredibly difficult.  I came home from hospital in pain, weak, dizzy, exhausted, panicked.  But being a single parent, I just had to continue as normally as much as possible; so back on the school run the next day, looking after my babies, seeing their wonderful Christmas concerts, housework, studying, fighting infections, CHRISTMAS!

The three week wait for my results was absolute agony; not just physically, but mentally too.  I couldn’t really tell many people what was going on for various reasons – the main being the Christmas period and not wanting to cause upset to others or be a burden.

Well, the 3rd January FINALLY came around and I was sick with nerves all day waiting for my afternoon appointment slot.  The wait in the horrid, stuffy depressing Oncology waiting room (right next to Maternity of all places; really people, talk about adding insult to injury?!?!?) was made slightly more bearable by my lovely chap holding my hand and getting me to play eye spy bless him.  But as always I chose to go into my appointment alone……

I can’t begin to tell you how good it felt to be physically shown a paper report by my Oncologist with the words “NO MALIGNANT REOCCURRENCE FOUND” written on it!  I felt an instant peace come over me.  My cancer hadn’t spread!!!

My main worry over the past few months hadn’t been ‘just’ about the cancer possibly spreading, but more about how my kids would cope going through the same thing again.  A mum will always put her babies above anything else.  Always.

So, despite being given the ‘all clear’ (which is absolutely fantastic!) I still have a second bigger surgery to follow to try and unfuse my organs in the coming months, but after cancer everything else seems pretty insignificant in comparison.

I really don’t know how I would have gotten through the past month without a few amazing people taking such good care of me and my babies.  We love you xxx

And for every other female reading this GET YOUR SMEAR TEST because believe me the alternative doesn’t even bare thinking about.

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Grateful Reflections…

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Most people will think I absolutely love Christmas, afterall I am forever dancing around to the cheesy Christmas tunes embarrassing my babies and couldn’t wait to dust off the novelty jumpers & awful sickly festive DVDS!  But in reality, Christmas for me is a very difficult time, as it is for many others.

In 2006 I lost my Poppa on Christmas Day, followed by my wonderful Nanny 30th December a few years later.  These two deaths alone made me dread the Christmas period, but as a Mummy you learn pretty bloody quickly to paint that smile on and chuck yourself into the festivities to ensure your babies have the most magical time.

Then in December 2014 I had my cancer treatment.  As a mother it absolutely broke me being so unwell and not able to give my babies the Christmas they would normally have.  But equally, it was probably one of the most touching and special as we weren’t rushing around trying to cram everything in.  I also remember getting a pretty spectacular phone call late Christmas Eve; my wonderful Oncologist wanted to tell me personally I was cancer free.   I will always be indebted to that man for giving me more time with my babies.  Always.  

This year, the lead up to the festive season has been very difficult again, but for reasons I’m not quite ready to share just yet.  But my duty as a Mummy will always be to ensure that my babies have magical memories.  I of all people know how precious these are.

Despite the challenges surrounding Christmas, a text I got from a good friend prompted me to reflect and appreciate some of the wonderful people I have around me.  He called me ‘pigheaded’ because I have a tendency to shut down & not deal with certain shit.  Now, if anyone else would have called me that they would have been firmly told where to go ha!  But I think he is probably the one person who can get away with it & actually make me question my actions.  For that I love him, even if he is a car-nut chav 😉  And I probably don’t tell him enough how incredibly proud of him I am.

Then there is the Northern blonde bombshell who just says it like it is whether I want to hear it or not lol!  And the loveable cocky Glaswegian who drives me absolutely mad, but has a heart of gold.  The ginger swadie who I miss more than he realises.  And my wonderful ‘adoptive’ family who would do anything for my babies & have been there through thick and thin over the past 8 years.   I Love you all x

I think sometimes we get so blinkered fixating on just getting through each day that we forget to step back and appreciate those around us.  And for anyone else who finds Christmas hard, I’m sending you a hug & vodka 😉

And always remember…..

grateful

 

 

Amy Griffiths, Well Being Freedom Services Ltd ©

Spreading The Word #RareNotFabricated

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You will remember from my earlier blog here that I have recently become SWAN UK’s first Volunteer Parent Rep for Wales, covering the Cardiff and surrounding areas.

Well, in October I spoke at the Third Annual Rare Disease Patient Network Meeting, based in Cardiff. The day involved a range of talks from guest speakers ranging from genetic testing, data sharing, the connection between mental health and living with a rare disease, policy changes and both parent and patient experiences. The event went really well, a good mixture of professionals, patients and parents.

I wanted to talk at this event because I feel very passionate about ensuring that not having a diagnosis should not prevent accessing information and support services! I actually found the experience of talking easier than I expected. I purposely didn’t dwell too much on the early years as they were quite difficult times. Instead I focused more on being a good advocate for your child’s needs and how being a part of SWAN UK can be a really good support network when you don’t feel that you ‘fit’ anywhere else. I found it really rewarding to hear such wonderful feedback during the break, and to chat to some new parents who are keen to join our SWAN UK Wales network!

I hope from my talk that the professionals can take on board the anxieties some parents may have, and also include parents fully in all decision making processes to ensure that the correct needs of the child are met and that the relevant support services are put in place. I cannot wait to engage in more public speaking on behalf of SWAN UK! I want to do more talks like this in my role as Parent Rep as it’s really important that professionals work closely with parents (who are often the experts on their child’s needs!) to best support not only the SWAN child, but the family as a whole too.

Without a diagnosis it can be challenging to access the support and information you need. Many families don’t feel that they fit into the wider networks for parents of disabled children, and therefore end up feeling more isolated.

I am really looking forward to developing the undiagnosed network in Cardiff; it’s been a long time coming! I can’t thank SWAN UK enough for the support they offered my family in those early years, where as a parent I felt ignored, belittled and isolated at times.

I’m keen to ensure that SWAN UK families have a voice, and that a label should never restrict access to support services and now I have officially been named as Parent Rep for Wales, it is full steam ahead!

 

To find out more about SWAN UK follow their website https://www.undiagnosed.org.uk/

 Amy Griffiths, Well Being Freedom Services Ltd ©

A Busy Mum’s Summer in Pictures

So, the Summer holidays can sometimes fill a busy mum with dread BUT in reality between all the sibling squabbles and billion demands for a snack, perfect memories are made!  You can read my rather humorous recap of ‘Day One’ of the holidays HERE!

This year we had one of our BEST summers ever thanks to my clever planning ahead!  Our weeks were filled with laughter, holidays, daytrips, friends, family, good food, smiling monkeys, saucy tortoises, detoxing (me, not the babies!), training for a mud run (also me!).  

Here is what this busy mummy and her wonderful babies got up to this summer!

 

Amy Griffiths, Well Being Freedom Services Ltd ©

Well That’s One Off the Cancer Bucket List!

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Well today’s ‘office’ is me on the sofa under a blankie, exhausted, run down and in pain.  But it’s largely self inflicted and I’m so glad it is!

You see since cancer, I’ve been compiling a kinda bucket list in my mind given my second stab at living.  As a result lots has changed over the past two years; relocation to the beautiful Welsh mountains; I’ve completed a further nutrition diploma; I’ve taken up singing again; I’ve re-found laughter; and I’ve shocked myself into loving running!  Yes you heard right!  Yes, me running!  

Some of you will already know that I live with chronic illness in the form of a rare genetic condition called Ehlers Danlos Syndrome (and many wonderful associated aliments) and Secondary Lymphoedema due to the cancer treatment; both which can affect my ability to walk quite significantly at times.  Despite this, I added a rather challenging and bonkers item to my bucket list recently – to complete a MUD RUN!  Yes, totally bonkers!  You will read from my previous blogs how I’ve struggled with my fitness due to my health – you can read them here and here if you haven’t!

This is what I wrote on Facebook on 9th September:

“So, have kept this quietish in case I wasn’t able to take part for health reasons, BUT apart from just detoxing my body & mind, I’ve been training towards one of my bucket list goals since surviving cancer 2 years ago…..Today I’m VERY pleased to say I SMASHED my first ever mud run, completing a 5K course with muddy obstacles in the heavy rain in just 36 MINUTES!!! Not only did I stay in the lead of my race, I actually outran the majority in the race that set off 15 minutes before me!! I’m soooo emotional & what really made it extra special was having my two babies complete the last 100 yards across the finish line holding my hands – MY WORLD & reason I continue to fight living with chronic illness and beating cancer!! xxx.”

I still can’t believe what I achieved!  All by sensibly stepping up my walking over the past 6 months, sticking to a very strict detox and high-protein diet, and shutting out negativity.  Of course this combined with an EDS burst of adrenaline on the day; the celebration to still be alive and the love of my babies is what truly got me through that race and over those obstacles!

I still have to pinch myself; I could literally burst with pride.  I really could.  The haters couldn’t burst my bubble, and nor could the awful downward spiral in my health since as a result!

I’d do it all again in a heartbeat!

 

Amy Griffiths, Well Being Freedom Services Ltd ©

 

Cancer Recovery Diet – Kick the Beast!

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Being diagnosed with cancer is one of the most devastating times in a person’s life.  The shock, denial, the unknown all take its toll alongside the actual cancer and any treatment itself.  This life-changing event can understandably leave you neglecting your diet whilst you struggle to come to terms with your diagnosis and any treatments that are to follow.  However, cancer treatment places a very high demand on the body and good nutritional health before; during and after cancer treatment is important in your overall road to recovery.

Good nutrition will help:

  • Maintain & improve quality of life
  • Help recovery
  • Fight infection
  • Maintain strength & energy
  • Boost your mood
  • Reduce medication/treatment side effects
  • Stabilise hormones

One of the easiest and simple ways to incorporate healthy nutritional foods into your diet is to follow the basic principles of ‘clean eating.’  This simply means:

  • Choosing whole, natural foods
  • Choosing unrefined foods , unprocessed packaged foods
  • Including some protein, carbohydrate and fat at every meal – a good balanced meal contains everything you need to fuel your body, promote healthy growth & keep the immune system balanced. Try planning your meals around your chosen vegetables, filling half your plate & eating these first 
  • Watching out for salt and sugar
  • Avoid caffeine & even decaffeinated drinks
  • Eating five to six small meals throughout the day – aim for two decent sized main meals & a few hefty snacks
  • Consider following a more plant-based diet such as Vegetarian or Vegan, which can help lower inflammation in the body.
  • Include some saturated fats! For decades we have been told saturated fats are damaging to our health, however more & more research is now disproving this theory.  So much so the Swedish Government is now encouraging its people to eat more of it.  When you eat saturated fats as part of your meal, they slow down absorption so that you can go longer without feeling hungry. In addition, they act as carriers for important fat-soluble vitamins A, D, E and K.  When choosing a saturated fat, aim for:
    • Avocado
    • Coconut oil – this is a key saturated fat to add to your lifestyle as it contains many healthy benefits; such as fighting off infections, improving the skin, decreasing heart disease. It also keeps you feeling fuller for longer & helps aid weight loss!
    • Ensure you include only moderately

Ideally we should all aim to eat organically, especially if recovering from cancer.  However for anyone on a tight budget this isn’t always possible.  Try visiting your local farmer’s market where you will often find fresh produce cheaper than at the supermarket, or purchase meats in bulk and portioning them up for the freezer?  Remember, fresh organic produce is FAR more nutritionally dense, meaning not only is it healthier for you, but it takes longer for the body to break down, thus keeping you fuller for longer on smaller portions!  If your budget cannot stretch to organic all the time, then remember many of the tougher fruits and vegetables contain much lower levels of pesticides, but do give them a good clean before using.  Here are some items which are always best to try & spend your organic budget on:

  • Apples
  • Cherries
  • Bell peppers
  • Peaches & nectarines
  • Cucumbers
  • Raspberries
  • Strawberries
  • Spinach
  • Celery
  • Grapes
  • Pears

Most importantly – BE KIND TO YOURSELF!

 

Amy x

 

Amy Griffiths, Well Being Freedom Services Ltd ©