Being human …

I was recently asked if I was interested in supplying a blog for a fellow oncology mum’s blog page. She’s a highly respected and successful blogger so it’s nice to be able to get to a wider audience and increase my own visibility, but truth be told that isn’t the reason that I chose to write.  I’ve mulled over the topic for a while thinking of what angle I can take, coming up with some ideas but nothing really felt right or held any cadence, that is until 10 minutes ago when I got a text from a young chap I met at the weekend – calm down, much more harmless than you think!

You see, we were at a charity event called the LimbPower Junior Games which is an annual event at Stoke Mandeville Sports Centre. It’s a sporting event for those with limb difference, in which children get to try a vast range of adaptive and inclusive sports.  We went last year, when M was just finished chemotherapy and was only just coming to terms with being an above knee amputee. The whole family participated and loved it so much that we were determined to go back again this year. It is a fab day and LimbPower really is a worthwhile and forward-thinking charity, so if you know someone who has limb difference (congenital or acquired) they are worth looking up (limbpower.com).

Danny spent a considerable amount of time chatting to M and discussing how she can communicate more effectively with our Enablement Centre in order to get the most from the provision of a sports limb. He has since texted me asking for further contact details so that he can forward information to help us in selecting limb components etc, and it was then that I had my lightbulb moment (which M will find even more amusing as only this morning as I was driving her to school she asked what I was doing with a lightbulb in the car’s centre console “Do you hold this up above your head Mum, and wait for a great idea?”, “Oh if only it were that simple Love” I replied – but I think she might have a point, so I might not remove it just yet!!). 

But Danny’s text today made me realise the ‘being Human’ has what has gotten us through M’s cancer / amputation … Being human to me, is about having frailties, recognising them in yourself and seeking help, but also supporting others. There have been so many individuals who have picked us up, comforted, shown love, care, compassion and thoughtfulness to us (all started out as complete strangers – many have become trusted friends and caring advocates). These connections were often forged when we are least expecting them and probably when we most needed it.  I personally don’t believe in divine intervention but to clumsily paraphrase … maybe there ‘are’ more things in Heaven and Earth than in my philosophy.  All I know is when I needed strength and guidance it came to me – through human contact and interaction.  It only takes a few moments looking at current global events to be reminded of the quote “When I was a boy and I would see scary things on the news, my mother would say to me ‘Look for the helpers, you will always find people who are helping’” F. Rogers.

I also feel that truly ‘being human’ is contagious. I see first-hand those that have been helped, reaching out and helping others, through charities or trusts, bereaved oncology parents go forward with their grief and try to make a difference to those who are still going through treatment, those who are widowed set up groups to induce further ongoing support … the list goes on.  Behind every charity or support group you encounter, I believe there will be individuals who have experienced pain and loss and want to assist others.

For me too it is also becoming important to contribute and support others, feeling united by our common experiences and with that aim of trying valiantly to help and support those who are going through similar circumstances.  I didn’t choose to become an oncology mum, but now that I am, I have developed a skill set and experience base that strengthens my daily life. I know what diagnosis day feels like, what surgery day fears are, and how every x-ray brings ‘scanxiety’, and I have learned many techniques in coping and not coping. These have been born out of the human beings that have surrounded me through my daughter’s diagnosis and treatment and beyond.

So, my reason for doing this blog is for someone I have not yet met, but I feel to be a kindred spirit who has soul, grit, love and smidgen of vulnerability, whom has listened and counselled me and who I know will continue to do so, and therefore I feel universally lucky to have this fellow human being as my friend.

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Blindsided

Do you identify with this feeling?  You’re bumbling along all tickety -boo and ever-so pucker and then you get hit by a wall of emotion?  It feels like a crushing tsunami, slamming into your legs, demolishing your stability and strength and you come tumbling down (often in what seems cinema style slow-mo) to your knees?  That’s the effect an emotional trigger following trauma can have. I can’t speak for all, but for me it can feel like a ‘rabbit caught in the headlights’ freezing my thinking then everything speeds up and I feel as if I could drown in panic, an ever-expansive spiral of fear and negative thought patterns. It can be mild or it can feel colossal.

Sometimes I am able to recognise the tell-tale signs that I’m about to ‘be hit’ and I can shield myself with self-talk and distraction. I have developed a mantra of “Action is better than in-action”, and I have found that physically moving can literally move my head into a more positive space. Be it ironing, washing or hoovering or baking. Taking up that ‘panic’ space in my head with something constructive works for me.  I’m trying to extend this into a slightly more personally regenerative area by trying to use Pilates, reading or swimming but as they are more scheduled activities they are not as good as ‘heading it off at the pass’ than tasks I can immediately focus upon.  The introduction of a puppy into our lives does however mean that I can just ‘get moving’ and take her out for a walk – though I am in serious need of some decent ‘non-fuddy-duddy’ waterproof walking shoes and coat – this County has its fairer share of rain than most!

But what about those times when you’re completely blindsided and have no time for distraction techniques? Me? I tend to cry. Though I get annoyed with myself for doing so, it does act as a really cleansing way of letting the grief and fear out but it is a bit socially awkward. People often don’t know what to do or say.  Believe me, I don’t need a raft of soothing platitudes, it’s almost like I’m a bottle of coke that got dropped on the floor and the only way for me to release (at the moment anyway) is to ‘leak’ … maybe I need to reframe crying as simply ‘effervescing’ – after all we as children used to say “she’s bubbling” when someone was crying?

So, what ‘blindsides’ me?  Well, I’ve started compiling a list, and in no particular order and just a few triggers are …

·        The chilled food cabinets in M & S … or to be more specific the memory of the smell of the food. You see there is an M & S next to Bristol Children’s Hospital and for nearly 9 months I ate ready meals and sandwiches from there – a treat some would say, but I was too scared to venture far from my daughter’s side whilst she was in for treatment this was my sustenance. But even the packaging on an M & S Spaghetti Carbonara can make me come out in a cold sweat. I swear Pavlov would of have had a field day with me!

·        NHS car parks, though this could actually also be down to the exorbitant charges, lack of disabled parking spaces and too small spaces or weird barriers. I think its just car park fatigue in general that can tip me over the edge. My patience varies in strength from ‘eternal’ to ‘a hundreth of a nanosecond’.

·        My children / husband being uncontactable for a period longer than expected. Now as a parent of 3.5 (part time step son) who are all 12yrs+ this comes as somewhat of a doozie. Just as they are on the cusp of spreading their wings and seeking independence I’m yanking on that parental leash every hour or so – I genuinely feel I’m exaggerating here for comedic effect – but I bet my darling offspring will shaking their disdainful heads in mockery if they choose to read this blog).  It stems I feel from the understanding that you can’t tell me that lightening doesn’t strike – because it does! And if it can strike once, it can strike twice. I realise that me keeping tabs on everyone I love is completely unrealistic and I’m working on ways to master / deal with this.

·        Cancer Charity adverts / promotion. It’s everywhere! We just can’t escape it. Leaflet drops, cold calling, recycling bags, adverts in magazines, TV, social media … even a cinema trip. It’s like we can never escape the reality of our new existence.

·        Facebook prompts and notification from oncology groups, and this also includes photos on my phone, of her hair loss and limb loss. I find looking at her ‘old’ leg quite hard at times, as it reminds me of what she has dealt with and how much our lives have altered. Believe me, though I realise just how lucky we are and I am thankful for that – but I am sad for the extra stress and fear she now has to live with and learn to manage.

There are other triggers but you get the idea … I am learning to cope and adapt and reframe much of my responses but it is a long-haul trip and I’m not even convinced there is a destination or an end.

 

Smelling the coffee …

At this precise moment, I’m writing a blog on a topic that I know not what it actually is going to be about. It’s somewhat akin to getting lost on a mountain in an unknown country … who knows where I’ll end up?

You see, normally, I prepare and cogitate for a while before putting fingertips to keyboard. But I’ve been absent from my ‘blogging space’ and I have been yearning to get back to it.  It’s truly one of the times that I can just prattle on and get stuff out – extremely cathartic.  But the summer holidays are upon us and I’ve not had much time to sit down un-interrupted.  Believe me, I’m in no way complaining – I spent all of last summer in paediatric oncology wards – so having time (even if its not doing much) with my family has been wonderful – but it has most definitely put the kibosh on my writing.

 

However, today my three ‘Eggs’ are having 4 days away with their Father. He’s planned a lovely trip to Cornwall and I’m almost jealous – but it means that for the first time in 8 months I get a whole 24 hours off! It’s just me and the hubby (oh and the pooch) so I’m making the most of my break from parenting whilst his nibs is still at work and getting some ‘head-space’.  We are having a date night tonight, and have plans of ‘mooching’ round Bath tomorrow. Slightly excited? You betcha!!

 

To be honest I rarely get much of a parenting break these days, so much so that I find I don’t know what to do with my time and I find it draining away like sand in an egg-timer, thinking of what the children will be doing and how much I miss them, or carrying on with jobs around the house – that could in all honestly wait. So, it seems I spend time thinking about what I could do if I had some ‘me’ time but when I do get it, I waste it!  And although I realise that I’m talking still talking about them now, I’m achieving something for myself and my sanity at the same time by blogging.

Actually, now I come to think of it, it is peculiar, that often the things we feel we yearn for: ‘me’ time; Sunday morning lay-in’s; no school run, child free days / nights out etc. are not always what we expect. A case of the grass being greener perhaps?

I now know that after having had a year of not being able to do the school run because of my daughter’s chemotherapy and surgery protocols I really don’t mind it at all.  Sure, Sunday lie-in’s are an occasional nice experience but realising that it’s a sunny day, and we’re not stuck in a hospital somewhere spurs you on to carpe the hell out of that particular diem.

Although its lovely thinking I’m not on 24 hr rapid recall response for the next few days, I wouldn’t change my role as full time Mummy to my three Egg’s for the World and its chattels. My children have become even more precious to me (now, don’t get me wrong – they drive me ‘batchy’ at times but I don’t regret one single grey hair inducing moment EVER) since M’s illness.  It’s almost like her cancer diagnosis was a ‘wake up and smell the coffee’ call. Despite the hell we have been through and the stress and strains we still encounter I feel damned lucky to have my children and the associated tasks and chores of parenting and motherhood.

So, I suppose on reflecting what I have typed so far the topic of this blog isn’t actually a topic at all but more of a rallying call to myself. Use your ‘me’ time effectively for a positive experience and don’t necessarily plan and cajole the words beforehand.

It’s been truly liberating just sitting down and typing and not knowing where, why or for how long I’d travel.

Gird your loins folks … I think the start of the coming academic term will mean a lot more writing and a lot more blogging. And I can’t wait to start …

 

Advice

What do you say to a child who has had cancer or is living with it?

In my experience … as an oncology mum quite a lot it would seem. My daughter and I have shared so many conversations its un-true. And we both agree this is one of the positive things her cancer diagnosis has given us.
We have bonded irrevocably. Admittedly, for around 9 months we lived in each other’s pockets – or rather we shared an NHS room. I only had 1 night away from her in that period – and we only had very brief visits home in-between treatment and the resulting admissions because of the side effects she suffered from the chemotherapy.
So, in those times you can imagine – we talked a lot. No, like ALOT! No subject was off limits – honest and frank discussions ensued … after all we had the time. Sometimes we argued, sometimes we sobbed, we discussed and critiqued the countless baking and cookery shows we binge watched, we planned for our future ‘non-hospital times’ and tried motivating each other when the going got really tough. We discussed funeral wishes, life aspirations and just how much we loved each other. I cherish the closeness that this time gave us and feel somewhat guilty that I haven’t established this frequency of communication with my other children. Don’t get me wrong I do talk to them it’s just M and I had 9 months of 1-2-1, but I’m aware of this gap and attempting to bridge it.

 

The idea for this blog came about from a conversation with a friend whose son (let me call him ‘Ironman’) is still under treatment, for a differing paediatric cancer.
Interestingly, my daughter met another friend who has the same type of cancer and they discussed their protocols and chemotherapy treatments. M’s treatment protocol was 7 months and very high dose and all in-patient, whereas our friends from Evesham son’s treatment was at a reduced strength and ‘mainly’ planned out-patient but for but a whopping 36 months! Over time they discussed the pros and cons of each other’s path of chemotherapy: “Mine’s harder to cope with but only for a shorter period, whereas yours isn’t as hard hitting but you have to do it for 3 years! They never did resolve who had the worse deal (in my opinion I don’t think they are at all comparable – but kids will always compare stuff).

Anyway, Ironman’s mum was telling me that he had been having a tough week (as I think she had too but she does like to deflect from herself and help others when she’s going through crap herself – she’s like that – I do like her a lot!) and it got me to thinking, should I contact him and give him some motivational message, would he think it strange that some woman he’s never met giving him platitudes of coping etc and then I came across a YouTube video of an Oscars acceptance speech by Matthew McConaughey for his role in the ‘Dallas Buyers Club’. In it he talks about what he needs on a daily basis, and paraphrasing he states he needs someone to look up to (he chooses God – each to their own), and someone to look forward too and this is where he states his family and finally someone to chase. He chases his hero, – his hero is himself 10 years in the future – and as he says he will never catch his hero but will constantly strive to be him.

It made me think … our oncology children are their own hero’s … they often don’t get to see it but as their parents we do. They achieve and push themselves beyond what they ever thought capable pre-diagnosis, they find kindness and care for others when they are in pain (M once thanked a trainee nurse for removing her wound sutures and told her she’s done a good job and didn’t hurt her too much and that she’d make a great nurse once qualified – M’s were the only dry eyes in the room at the time!)

So, I’m not going to message Ironman – I’m certain he’s got it covered by his amazing Mum and Dad.

I would be interested to know though, if both M and Ironman were to write advice to their ‘present’ selves from their ‘future’ selves what they would say …

 

Soliloquy

You sadden me, you really do. This doesn’t do me any good. You’re completely unaware of it and so today, I’ve decided that I’m not going to let myself be saddened anymore.  And I feel enormously lifted by this decision.

You ‘choose’ not to see the children for months at a time – and you have your own reasons which I’m not privy too, yes life is hectic and busy, work is ever more demanding and time off is getting scarce, and I’m not even going to venture into the Maintenance thing.

You will blame their un-communicativeness as a possible reason – and yes – they are guilty – I will point out at this juncture that I live in the same house and they don’t always respond to my texts or prompts – I think its something to do with them being slightly ego-centric teenagers though! I try not to take it too personally, I don’t think you should either – after all you’re older, wiser and more mature…

To be brutally honest, it’s not the children whom I worry about, regarding your lack of contact with them per se. They are amazing children who live with two supportive parents (whom they detest at times because well … we ‘parent’ them – and for some odd evolutionary joke teenagers despise being parented).

It’s you … I worry for you. That you’re missing out on some wonderful times with them, with some unrepeatable memories to be made. That they would help you be a better more caring version of yourself.

Now, I know we had children together and we were together for a long time and I brought up some of your children from a past relationship – BUT we had THE most acrimonious divorce and we don’t enjoy each other’s company – so why the hell am I picking up the emotional crap of worrying that your parenting choices / involvement are negatively affecting you? You didn’t ask me too and I sure as hell don’t enjoy doing it.

 

Funny enough, I’ve just this week been having a discussion with a good friend about how life is pretty tough at the moment and I was trying to figure out how we move forward as a family following M’s diagnosis and amputation, and she pointed out that I do seem to take on board lots of ‘stuff’ from others.  It was a bit of a lightbulb moment … and then I found a quote that seems to fit perfectly what she had observed of me:

“I’ve learned that you shouldn’t go through life with a catcher’s mitt on both hands; you need to be able to throw something back” Maya Angelou

 

I can’t change your attitude to parenting, and as it’s pretty much the damn the polar opposite of my style I don’t think there’s ever going to be much consensus there.

But on reflection, I think that I have been too ready to pick up the crap from others, … even if it’s not intended to be my crap!  It’s kind of been ‘my’ way, maybe I see myself as a bit of a good Samaritan – or maybe I’ve possibly taken the Wonder Woman thing a bit too far? So, that’s it … Justice League is going to have to cope in my absence … I’m hanging up the crown and listing the invisible plane on eBay.  I no longer need to fight for equality and justice for all. I think our children are grown up enough to fight for themselves, and I need to refocus my drive and desire on supporting and nurturing my family. And my throw back …? Well, I suppose to say I’m not angry anymore and that I’m thankful we ended our marriage. I’m a better person for it.

Oh by the way, Karma called and wanted to leave a message for you, but I was busy and frankly didn’t have a pen … so you might want to phone them back at some point …

Friendship …

I’ve been thinking a lot about this over the past couple of weeks. How are friendships formed and maintained?  Are there un-written rules about friendship? Are friendships time limited? Are there any other differences between remote/online ‘friends’ and those whom we see and meet?  Is there a time when a friendship comes to a natural end or should you go above and beyond to keep all connections going? Don’t get me wrong, I’m not going to impart any wisdoms, I don’t have any pearly advice or insight.  I’m not the best at keeping in touch, but my family’s experience of a cancer diagnosis has really impacted on our friendships and its got me thinking about this topic.  I’ve lost contact with some people following M’s diagnosis and have been surprised and disappointed accordingly.

 

It’s been said before, but bad news has a way of sifting the wheat from the chaff – by which I mean that a cancer diagnosis (or other such life altering news) is a fast track way of testing the strength of friendships.  Prior to being told M had cancer, if you’d have asked me “who would stick by you if the brown stuff hit the fan?” I think I’d have given you a pretty comprehensive list of those family and friends who would have our back.  Post diagnosis and almost 19 months on, and the list looks quite different…

I must state that I have and continue to hold dear some seminal relationships with friends who have stuck by us through thick and thin.  They have gone above and beyond to help and support all members of our family unit, and they continue to do so.  We’re lucky to have them, and we count our lucky stars to have them.

Analysing what makes these strong bonds I’ve come to the conclusion that geographical location and face to face contact doesn’t seem to be a precursor to a successful friendship. Neither it seems, does longevity. In fact, I’ve made some friends in the past 18 months who know me better than friends I’ve known for 10 years +.  Admittedly, most of them are also oncology parents – but with another oncology parent – you don’t need to explain so much.  The fraternity we enter once diagnosed with cancer is a hugely supportive and knowledgeable enclave.  I asked one of the Facebook oncology groups I’m a member of for their advice and experience with regard to friendships for this blog and the themes and issues were all too familiar. 

 

Some people have maybe had too much personal experience of a situation and are still decompressing from their own experiences. I can only surmise this though, as no one we know expressly said as such – they just weren’t there!

 

Some don’t cope well with a child’s illness and disability. It doesn’t seem right in the scheme of things – and believe me it isn’t. They don’t know what to say or how to cope with the situation. They themselves are scared and don’t want to appear to ‘lose it’ and add to the situation.

 

Certain individuals lack knowledge over cancer and chemotherapy treatment and fear hospitals, so you won’t see them for love nor money.

 

Then there are some who are themselves so distressed by how sad you are that they simply vanish – as they have the option that we don’t – of being able to distance themselves from the situation.

 

I also think that I think that some friendships fall by the wayside because, as an oncology parent your entire life becomes subsumed with medical details: blood counts, febrile neutropenia and raised temperature’s, mucositis, bowel movements and pee habits / colours.  Ask any oncology parent (who isn’t a medical professional) if they know what the ‘Bristol Chart’ is and they’ll just nod in glum recognition.  If you subscribe to social media your timeline soon becomes littered with rants and pleas and information all relating to paediatric cancers and lack of funding or research developments.  I guess to a non-oncology parent / friend it’s simply off putting.  Add to that that we cancel meet up’s and social gatherings.  Sometimes it’s a medical reason, sometimes its that interacting with others is so very hard and sometimes its just pure exhaustion. So that in turn leads to a decline in invitations…

 

Trouble is, once you are pulled from your ‘Muggle’ life by a cancer diagnosis there is no returning (I must explain the Harry Potter reference: online discussions about our oncology parents different perspective, has led to light-hearted view shared by some that oncology parents are Wizards, non oncology parents are Muggles and with the possibility of those parenting children in remission become Half-Bloods. Harmless fun and as so many of us go on HP film and book marathons whilst in-patients – quite apt!) The fear, dread and reality of our different doesn’t ever leave you.  We can’t un-wizard ourselves or un-know the reality of this horrendous disease or un-see the pain our children go through in coping with the treatments. So, inevitably we possibly become viewed as more emotionally more ‘high maintenance’, we’re less predisposed to cope with the facile and unimportant.  We’re more likely to comment and call out where we see a ‘crock of poop’ or walk away so we don’t have to endure it. We’ve had to deal (basically because we don’t have a bloody choice), and we’ve had to face horrors we never imagined possible to endure. We’re not super human or superior, but the process makes us different.  Sometimes stronger, sometimes broken … sometimes both.

 

Cancer is a pile of crap. Friends and family often don’t know how to cope when a young family member is diagnosed, although I’m not sure any of us who are placed in this unenviable position do perceive that we cope at all, it’s more a case of learning to take the next breath, and placing one foot in front of the other …  

Hope and Hurt

No, it’s not ok. Everything’s rosy.  No, I’m not ok. I’m so very thankful.

I’m broken and I’m mended.  I am stuck between a rock and a beautiful beach.

I feel like my life is picture perfect yet my mind is in tatters. 

 

Cognitive dissonance is a term that keeps recurring from my academic past.  It is used to describe the uncomfortable feeling that arises from holding conflicting views/beliefs.

 So, this blog is written from both sides of the fence. Some of its angry and sad and has some swearing in it. But that’s my life. So, if you don’t like then you can choose not to read.  If you read, you can choose to be offended or not – it’s up to you.  The grammar will be shot (I don’t care – I’m crying as I write this but I feel if I don’t actually get this out then it will continue to fester and hurt me further) so if your part of the Grammar Police – send violation notices to the email.  I shan’t read them, and that incorrect ‘your’ was purely for you.

 

My darling youngest daughter had cancer.  Its nearly 18 months ago … and yet when I recall that day it feels like yesterday.  It hurts. I feel physically sick. I’m sad, but mostly I’m fucking angry. I’m fearful for the future.

 

For as if the

·        fear of dying young,

·        operations for inserting a Hickman Line and taking a bone biopsy,

·        the concern over X-rays, MRI’s and radioactive bone scans,

·        gruelling sickness from chemotherapy,

·        horrendous mucositis from chemotherapy so bad that morphine is required,

·        gastrointestinal infections (antibiotics pumped into her system during febrile neutropenia wipes out ALL gut bacteria, so the body starts working against you and you can get infection like C-Diff which is funnily enough treated with MORE antibiotics),

·        isolation from friends and family for nearly a year,

·        absence from school for an entire academic year,

·        hair loss and impact on teenage self-image and esteem,  

·        seemingly endless amounts of individuals who insist on bloody assuming that as her hair is short her gender is OBVIOUSLY male – and feeling the need to comment on ‘him’ and believe me not even earrings and dresses can reduce this one,

·        weight loss that means constant badgering to eat and drink when its the last thing on your mind or you cant actually open your mouth due to ulcers or nasogastric tubes which feel like a fish bones permanently caught in your throat,

·        hearing loss that results from the chemotherapy (non-recoverable) and the impact that this has on everyday life – and getting used to hearing aids. Again, more visual reminders of frailty,

wasn’t enough for her to have to cope with, she had to have her leg amputated above the knee. A permanent, no hiding from this one, no masking it … reminder of how cancer has attacked her.

My beautiful, perfect child had to and still struggles with much of the above list as well as deal with losing her leg, learning to walk, learning to wear a prosthetic leg (ask any amputee – even if you get an amazing prosthetic, it ends up being hot, heavy, sweaty and sodding uncomfortable).   Its not fair. It shouldn’t of happened.  I don’t want it to have occurred. I don’t want this version of reality for any of us. I’m angry at cancer. I’m angry not enough attention is being spent on rare paediatric cancers – the cancer my daughter had hasn’t seen any survival rate increase in 25yrs. It’s not fucking on!

I didn’t do anything wrong, we couldn’t have prevented this cancer occurring. Yet I feel like I have failed her in some way.  As a parent, it’s your job to protect your child from harm. And I couldn’t. I still can’t either.  She has x-ray’s every two months to check to see if its recurred. So, we have ‘scanxiety’ at each appointment waiting to see if its reared its ugly head again and we return to the nightmare. I live on tenterhooks, trying not to plan anything and feeling trapped in a world where monsters do live and attack.

 And now treatment is over, most people assume that everything must be “tickety-boo and ever so pucker” and we are just getting on with life – well I’ll let you know something … cancer is more invasive than the bloody tumour. Even after the cells are removed it haunts you and your loved ones. The mental, emotional and financial burden is subsuming. So often, I’m so far from bloody ‘fine’ its scary … I’m holding it together by the skin of my teeth …

However …

 

The other side of my life is a pure joy.  I have the most wonderful partner and husband who is the love of my life. My compass and confidante. He keeps me going, motivates and inspires me.  He loves me. He supports and encourages and provides so much for us all.

I have 3 children who are beautiful, perfect, inspiring young individuals who have the qualities of strength and courage tattooed through their hearts (they don’t see this yet but they will). They have been through so very much, they have had their faith in stability and constancy brutally shaken but ‘still they rise’ and I couldn’t be any prouder of their determination, love and pure grit.  They have far to go on their own journey’s and I am excited for them.

I have family and friends who have supported and continue to support us. Some who have been there from the very beginning and some whom we have met and connected with during the last 2 years. I don’t know how I would have coped without the emotional support. My oncology friends have kept me going in some very dark times and encouraged and supported me.

I have much to be thankful for in terms of having a lovely home and means of travel.

My experience of the NHS in general has been wonderful, I am lucky enough to call some nurses and support workers life friends and am very grateful for the care and support and love we have been shown by professionals.

Yes, my daughter has lost her leg but if that means that I get to keep my daughter I will learn to accept this.  She is greater than the number of her limbs. The world needs more individuals like her. Her tenacity and stubbornness, her humour and her kindness, her determination and her guts. I am in awe of how she copes.

So, yes I know I am lucky.  To be a wife and mother, friend and family member. To love and be loved.  Yet …  the duality of perspectives imprisons and restricts me.  I know the reality of each side of my life – I just currently don’t know how to cope with the dissonance between the two and up until this point many who know me have no bloody idea what I go through on a daily basis.  I currently feel that I need time and space to try and heal.