Haha Cancer, Do One!

So after a bloody agonising few weeks wait, I’ve FINALLY being given the all-clear after another sodding cancer scare!!! That’s TWO scares within 7 months; two lots of surgery; two lots of biopsies. I’ve beaten you once cancer, and there is no way you’re EVER going to beat me

💪

So cancer has taught me some valuable lessons………

  1. Live with passion.
  2. Push yourself further than you ever felt possible.
  3. Take chances. Life’s too short.
  4. Make memories. Not mistakes.
  5. Spend as much time at the beach as possible.
  6. Let music heal you.
  7. Never accept mediocre.
  8. Talk openly and honestly.
  9. Love hard and with sincerity. Always.
  10. Take no shit 😉
So with that in mind I have been busy re-writing my bucket list. My medical team are going to love me…….NOT ha!! But you only live once. Well, unless you are me. I appear to be a cat. And a fucking awesome one at that

😜

Now for the soppy bit….
Thank you to the Cocky Glaswegian for always being there for me (even when he’s not!) And my drinking partner in crime who keeps me amused falling asleep on my toilet lol! All my wonderful friends who have rallied around. The stranger at the swimming pool for a much needed hug. The stranger on the top of the mountain for his wise words of wisdom……And my beautiful babies who have shown unbelievable resilience over the years and make me incredibly proud each and every single day xxxxx

BOOM

I Hate This Place…..

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It’s been a while since I blogged ‘on location’.  Today my ‘office’ is the cramped, depressing Oncology waiting room.  I hate this place.  Not the wonderful staff; but how this awful clinic fills me with dread on each occasion, which gradually builds up for a few weeks before each check up.  I think most people who have fought cancer feel like they are a ticking time bomb, I know certainly that’s how a lot of my brave cervical cancer warrior friends feel.  I however, try to see it as living more for the moment, never committing to anything too far in the future. And that’s not me accepting some awful impending fate; it’s me learning to be more spontaneous and fulfilled in the moment instead (well as much as you can do as a single parent to two quirky babies!).

Looking around this airless room, it’s full of every aged and type of woman you can think of; cancer does not discriminate.  You can also tell which ladies are here for their check ups, and who are awaiting initial results….God I remember that day so vividly.  The day my world changed forever.  In lots of ways for the worse.  In other ways for the better.  I have a love hate relationship with my cancer journey – I wrote a very personal account on why this time last year which I would encourage you to read HERE.

Anyway, back to the stuffy waiting room…..I’m being subjected to an episode of Jeremy Kyle on the tele; “Did my fiancée have sex with another man on the bathroom floor?” Well according to the lie detector yes she did…..but of course she protests her innocent.  God, I’m bored and feel sick waiting here.  Whoever designed this place needs a hard slap. Sticking cancer females who are now largely infertile due to no real choice of their own, right within a maternity unit.  Yep, you read right.  Talk about adding insult to injury each and every time you come for a check up.  Clearly emotional well being still means very little to some hospitals; no matter how caring and wonderful your treating team are (and mine are amazing!).

So I’m home now, after over an hour’s wait, contemplating in that horrid room waiting to see my Oncologist.  Upshot is, I’ve made a fully informed decision to decline a drug and major surgery which was hoped would help ease some of my ongoing pain that was caused by my cancer treatment 3.5 years ago.  Even my Oncologist sighed a breath of relief that I had made such an empowering decision based upon weighing up the pros and cons of such a risky and big operation (even more so than my initial cancer surgery!), especially given my status as the sole-carer to my quirky babies.  I actually feel a calmness about ‘just’ living a life of a pain instead of having the treatment.

In other areas, I’m back in two months time to check on something new that has developed (FFS), another MRI, another referral to a different specialist.  This all comes at the exact same time as having heart scans, colonoscopies, and a different surgery next week.  But for now at least I can tick Oncology off for a few months before the panic sets in again…..

Is it gin time yet??? 

gin

 

 

 

Amy Griffiths, Well Being Freedom Services Ltd ©

READ THIS Before You Shovel That ‘Healthy’ Ice Cream Into Your Gob!

With Summer here (well, one or two days of it ha!) we all enjoy a little Ice cream treat, with many commercial companies offering ‘light’ or ‘diet’ varieties aimed at the weight loss troupes. But how do we know which ones are the healthiest? Let’s have a look at the content of three different types:
Weight Watchers Vanilla Ice CreamClick HERE for an eye-opening look at their not so healthy approach weight loss!

Weight watchers products are aimed at the weight loss conscious – you see the brand & automatically assume this is a healthier option. But is it really? Let’s look further at the ingredients in detail:

Milk – one of the main allergens in western society, & blamed for contributing to a whole host of medical issues such as leaky gut syndrome & auto immune disorders. Check out one of my favorite bloggers The Paleo Mom here who goes into much further detail.

Skimmed milk – see above, dairy but without the beneficial fat & over-processed!

Sugar – heavily processed & with ZERO nutritional value to us. Causes peaks in G.I. which can lead to diabetes & heart disease in excessive amounts. We have to make the assumption here they have used refined white everyday sugar.

Polydextrose – an indigestible synthetic form of fiber – yes, manmade, fake!

Maltodextrin – an artificial substance usually made from either corn or rice, which gives fat-like body to food products, increases their shelf life, & mixes quite well with other ingredients. It’s also cheap to make & produce. Though not a sugar, it still has a glycemic index of 130 by itself (table sugar is only 65). So unless you are burning off this high G.I. immediately with some intense physical activity, any excess will be turned into fat & stored in the body! So this is a clever way of Weight Watchers getting more sugar into you! & a fake one at that!

Cellulose gel – acts as an emulsion to hold ingredients together, usually made from wood pulp or cotton, & the cheap filler is stuffed into shredded cheese, salad dressing, & ice cream to thicken it without adding calories or fat. It’s also added to shampoo, lovely!

Mono & Diglycerides – are common food additives (E471) used to blend together certain ingredients, such as oil & water, which would not otherwise blend well, thus extending shelf life. The values given in the nutritional labels for total fat, saturated fat, & trans fat do not tend to include those present in mono & diglycerides. Mono & diglycerides can be made either from animal, vegetable or even synthetically produced, but we have no way of knowing which type Weight Watchers are using. Also the chemicals used in manufacturing these additives may well still appear in the finished product.

Cellulose gum – see Cellulose gel

Natural flavor – but what are they & where do they come from?? Are they from organic source without pesticides?

Vanilla extract – a solution containing the flavour compound vanillin, however, this version is very unlikely to be the ‘pure’ variety, so who knows what nasties it may contain.

Artificial vanilla flavor – well the name says it all – artificial, fake, & manmade!

Carrageenan – has ZERO nutritional value, added to many low fat processed foods to make them thicker & fuller. Some research has a shown a concerning connection between carrageenan & gastrointestinal cancer in lab animals, & current research is underway investigating its link with ulcerative colitis & other diseases like diabetes. Read here for more nasties on this ‘natural’ product!

Polysorbate 80 – another binder that’s found not only in food, but medicines & cosmetics too. When tested on animals, this substance was found to cause adverse reproductive effects, cancer & may affect genetic material. Sound like something you want to put into your body?

Vitamin A palmitate – a synthetic version of the essential nutrient vitamin A – yes, another fake!

Is this ‘healthy’ marketed ice cream still sounding like a delicious treat that you want to put into your body? Didn’t think so! It’s that clever old marketing machine trying to fool us into believing products from a commercial weight loss programme are healthy for us, when clearly the ingredients can be very harmful indeed!

So, now let’s look at an alternative ice cream; Bessant & Drury’s Vanilla Ice Cream. I have purposely chosen to compare Weight Watchers ice cream to another manufactured shop bought ice cream to make the comparison fair when it comes to shelf life etc. Let’s see how they compare on ingredients:

Coconut Milk –is the liquid that comes from the grated meat of a brown coconut. Coconut is often referred to as The Tree of Life’, due to its many health benefits – check them out here! Coconut has actually been found to aid weight loss, how brilliant is that!

Concentrated apple juice – high concentrations of vitamins & minerals, ASLONG as its 100% from concentrate with no sugars or additives added. However it’s unlikely to contain much fibre.

Glucose – a sugar found in plants & is absorbed directly into the bloodstream during digestion. Not actually required by our bodies in this form, other forms of carbohydrates can be converted in the body & used instead.

Sugar – ZERO nutritional value, our bodies have zero need for it! Again, causes peaks in G.I. which can lead to diabetes & heart disease in excessive amounts. We have to make the assumption here they have used refined white everyday sugar.

Chicory root –works well as a replacement for fat & sugar, & also contains a decent level of fibre. It also contains Inulin which prevents constipation, helps maintain a healthy balance of good bacteria in the colon, & helps lower cholesterol levels. High amounts however, can cause gas/bloating, nausea, flatulence, stomach cramping, diarrhoea, & constipation. Moderation is the key with this one.

Xanthan Gum – is a form of carbohydrate made by fermenting corn sugar with bacteria, used to bind substances together & reduce ice crystals in ice cream. Corn sugar isn’t a great form of sugar, & is now being linked to a whole host of health conditions such as diabetes & liver damage.

Natural Vanilla Extract –a solution containing the flavour compound vanillin.

Vanilla Pods – contain the seeds from the vanilla orchid plant. These are a good, quality ingredient, even better if organic. Some have linked vanilla as being a sexual stimulant!

Vanilla Flavour – where do they come from?? Are they from organic source without pesticides?

In comparison the Weight Watchers ice cream contains a whopping 15 ingredients, many of which are artificial & pose numerous health risks, whereas the Bessant & Drury’s contains just 9, many of which are not too bad. Bessant & Drury’s ingredients are certainly much more natural & quality ingredients than the Weight Watchers version, with the added benefit of coconut milk to aid weight loss amoungst its many health benefits.

BUT, if you really fancy an even healthier option, then try making your own! This is one of my favourite recipes – just 6 totally natural ingredients (make sure you use raw, organic produce though to get the best health benefits!):

Raw Almonds – a brilliant source of protein & healthy essential fats that not only aid weight loss but have many other amazing qualities too!

Shredded Unsweetened Coconut– we have already covered above, it has many healing properties & aids weight loss too!

Madagascar Vanilla Bean – a great quality ingredient, use organic of course for the best benefits.

Egg yolks – high in protein, organic ones are great as no nasty hormones have been added.

Honey – use raw honey like Manuka, due to all its healing health benefits.

Water – Nothing too suspicious about that! Try filtered waster if you really want a health boost.

But this comparison isn’t just about ice cream, I will be honest! Did you see the Channel 4 Dispatches documentary on Weight Watchers – How They Make Their Millions? I did & it was quite an eye opener! Yes, they remove some fat or sugar from their products, but they then replace them with a whole host of un-pronounceable artificial nasties that can be damaging to our health (as we found above!).

So, before you rush out to the freezer department of the local supermarket, don’t always assume the ‘light’ & ‘diet’ options are actually the healthiest or will help your fat loss journey – because they probably wont!

Remember, natural organic ingredients are by FAR healthier & safer in the long term, EVEN if they are full-fat versions!

Alternatively, just blend some frozen fruit with a little canned coconut milk to create an instant creamy (and healthy!) version to boost your fat loss journey this summer!

Amy Griffiths, Well Being Freedom Services Ltd ©

When the music just isn’t doing it….

busy-brain

Does your brain ever feel so busy that you are sure it’s about to explode?  Usually a good dance to loud music or exercise (on my good health days) really helps to clear the noise and get clarity on my thoughts.  Music is a wonderful tool for the brain, I live for music!  I wrote a previous blog about it’s therapeutic qualities which you can read here.  But lately neither exercise or music have worked.

It’s been a very difficult few months; health flare ups, massive issues with my youngest baby’s education (or lack of, but that’s whole other rant!); studying; exams; life.  I’ve been running on an empty-autopilot state for the past few months, under huge demands, not really processing much, just fire-fighting situations and trying to get through my exams.

If you follow me on social media, then you will know that despite everything going on (and being a single mummy to two wonderful quirky kids!) that my hard work paid off – I am now a fully qualified Fitness Instructor, YAY!  This means I can better meet the needs of my clients, rather than simply focussing on good nutrition.  But I will write more about that another time, sooooo exciting!

Anyway, back to my busy brain……side tracked again!  So when music and exercise fail to clear my mind sufficiently, I jump in the car and head to one of my special places to reflect and sort the crap.  I have four main special places which help me to reflect:

  1. Cardiff Bay – this is not so much the ‘place’ but who I feel close to when I am there; miss you always xxx.
  2. Caerphilly Mountain – this is a few minutes from where I live so I head there quite often if I need a quick ‘fix’ and can’t get to Cardiff Bay.
  3. My Aunty’s grave in Gloucestershire – although since moving away I haven’t had much opportunity to visit.  I need to make more time, I’m sorry.
  4. Torquay – before the babies came along, any sign of trouble or overwhelm and I was straight in that car!  Sometimes I didn’t even pre-book accomodation, just knocked on hotel doors until I found space.  These days I have to be less spontaneous due to said babies.  But we still enjoy heading to the ‘English Riviera’ once a year, although not much peace these days to reflect!

So, today I was meant to be going for a swim during my two hours of childfree time as it helps my Lymphoedema and EDS.  But instead I got the pull to grab the dog (we are looking after the most gorgeous doggie this week for a friend!) and head to Cardiff Bay.  I’ve hardly slept in weeks, so this busy head needed to empty!

It may sound odd, but when I reflect I am able to visualise a spreadsheet where I can sort all my tasks, thoughts, feelings etc into tables and columns to give me more clarity on situations.  It doesn’t necessarily always stop my brain being as busy, but stops a lot of the rushing around and muddling that can happen when i’ve been running on autopilot too long.

I envy those who successfully manage to meditate each day.  I just don’t have the alone time or patience for it, so for me I have to ‘reflect’ on the go which probably isn’t the most productive way to sort a busy brain, but hey life and shit happens.  So a calming walk around the Bay was the ‘meditation’ I really needed – I won’t dwell on the part where I had to pick up the biggest dog shit from right outside Starbucks – thanks Douglas for your audience witnessed crap! 

Welcome to my random life 😉

 

Amy Griffiths, Well Being Freedom Services Ltd ©

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…

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.

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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 ©