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

cervical cancer awareness

 

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.

smear

Grateful Reflections…

GoT_Christmas

 

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

IMG_20171015_153026_216.jpg

 

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!

21557866_757749484411515_8857539553898145699_n

 

 

 

 

 

 

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!

keep-calm-cause-its-time-to-kick-butt

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 ©

My NEW Exciting Role for Undiagnosed Kids!

swan uk

“Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Our Big Ambition here at SWAN UK is that each of these families will have the support they need, when they need it.”

 

SWAN = SYNDROME WITHOUT A NAME

How crazy is that??  Imagine having to live your life with a high possibility of NEVER having answers as to what is causing your issues?  For many (including my own family) this is a reality, even now in this age of vast medical & genetic research!

For most families getting a diagnosis remains just as important to them as their child grows up. Without one families can struggle to access the right support. They have no idea what the future holds for their child or if other children they may have in the future could be affected.

I joined this wonderful charity as a parent approximately 7 years ago after having my first child, and have continued to gain support after having a second child whom is also affected by a rare genetic condition.  I cannot thank the SWAN UK family for all the love & support they have given us over the years & the friends we have made along our journey.

Fast forward to July this year & I received an extremely humbling email from SWAN UK asking me whether I would consider applying for the role as the FIRST Welsh Parent Representative!  I was so excited I actually squealed!  Now I have been casually organising family events for SWAN UK for a number of years, but this was an opportunity to make more of a formal impact in the crazy world of Genetics, meeting professionals, recruiting new families along with supporting existing ones.  HOW THE HELL COULD I REFUSE THE ROLE???  I don’t think I’ve completed an application form so fast lol!

I’m extremely pleased to say I GOT THE ROLE!  (can you tell I’m excited yet???).  I have a few months training ahead, but cannot wait to get started!

 

Watch out South Wales, I’m coming to educate you ha!

 

i-am-so-excited

SWAN UK is part of Genetic Alliance UK, registered charity 1114195.

 

Amy Griffiths, Well Being Freedom Services Ltd ©