The difference a week makes......

Just over a week ago I was on a high having completed my first triathlon www.triathlonpink.co.uk 

One week on and unfortunately I can't wear my prosthesis due to problems with my residual limb.

Many would attribute these issues to the above, but in actual fact I felt totally fine the day after, not even a twinge (I was shocked too as it was fun but HARD work!). 

The reality is it comes with the territory or as I like to say 'it's an occupational hazard'. Whenever someone has had a limb amputated and wears a prosthesis there will always have to be an interface between the two and this is where the problems begin. However well fitting a limb is it only takes some warm weather, a little chaffing and the skin has broken down, then gets infected and wham you can't wear it for days. Sometimes you can patch it up like below but even at times with this much 'padding' it is literally still agony to put weight on it :( 

I realised that this is something us amputees have to deal with on a semi regular basis and to be honest the sooner you accept that, the easier it is to deal with. I am a pro on crutches (should be after 22 years!) only last night when I was leaving cubs after their American Football session (which I wasn't participating in incidentally ;-) I went to return to the car and found I had to go over a small fence...which I had obviously come over on arrival but never noticed! I guess I was too preoccupied by my daughter telling I was 'sooooo embarrassing' after I had opened the car window and politely asked the parent who just parked in the disabled space....as there were no others free(?!!) .... If he had a blue badge. I think you can guess the answer. He did move with no further dialogue.

The thing that hits me hardest is that you so easily and quickly forget how hard it is managing on the crutches or in the wheelchair. I use a wheelchair morning and night when I remove my leg, but only briefly. You forget how hard it is to do all the things you take for granted day in day out. Helping Joe in and out of the car seat, standing putting fuel in the car, preparing a meal, emptying the dishwasher, trying not to slip in the pool changing room, carrying shopping, icing a cake, not to mention working....to name but a few. It's hard not to get frustrated and cross. It's not even using my chair, you can adapt to that, it's because it's such a change. One day, fully independent the next, far from it. 

I wonder why I'm still surprised by the issues we face when trying to use a chair, whilst out and about. I tried to follow Sean into Costa Coffee on Sunday but couldn't as there was no dropped curb, except leading into a disabled space that a car was parked in. Now that DOES make me cross when I'm prevented getting my caffeine fix!! 

Then the reaction you get when pointing out to the manager at Guiseley Zoo (AKA Pets at Home) that it's virtually impossible to enter without going all the way along on the road/car park to the next store because of the bird tables, rabbit hutches and charity collection blocking the path. And not being able to hold your 3 year olds hand and push while in this situation. 'Well it's not usually like that!' Errrr well it is today!! Exhausting just dealing with all that sort of crap. 

And maybe one of the hardest, most wearing aspects is dealing with others reactions and questions. Don't get me wrong I'm not 'touchy' about my situation and always more than happy to explain to the child in the playground where my leg has gone and why I'm limping or wearing a blade. Children are naturally curious and honest and that is great. They are also far more accepting than many adults. 

This isn't the first and won't be the last time I am in this situation. In fact I need surgery on my 'sound' hip due to damaged cartilage :-/ which could see me using a chair for a few weeks. 

I shall leave you with an image of one advantage of not being able to wear my leg when attending Joe's gymnastics class with him today. It was the final session of term and bouncy castle....and somersault time!! :-) 

Battling with myself....

You may say I'm pretty content with my lot, used to the way things are for me physically and I manage. I get on with it. I won't pretend things aren't hard because sometimes they are. Whether it's wincing putting my foot to the floor as it's so sore and I need the 'big guns' in terms of dressings, barrier cream etc or I lose one of my hearing aids and not only am I without it but have to claim two and a half grand on the insurance to replace it (you may ask why I have to pay privately? Well it's because the NHS who caused my deafness through their misdiagnosis and unnecessary treatment won't pay for them for me!) or having such excruciating phantom pain whilst driving I think I will crash, so pull over. But I am used to it and it's doesn't eat away at me. Once these things have passed I forget about them until the next time.

But will I EVER get used to the comments? 

People always manage to catch me off guard and often I am left stood there not having a clue what to say, with my jaw hanging open. Then afterwards I spend ages analysing what I COULD or should have said, and kicking myself for not doing so. Why can't I sometimes just let it go? Surely the person 'means well' and 'didn't realise what s/he was saying' or 'would be mortified if they knew they'd caused upset' and 'didn't mean anything by it'. Right? Well, yeah, sure but it's not what they meant or didn't mean but the EFFECT it has on the person at the receiving end ie me.

I'm 100% sure the cleaner at the gym the other night when I was getting changed had no intention of upsetting me or making me feel (more) self conscious (than I already do) BUT that's the effect that it had on me. It taps into my own insecurities and worries, that are natural to have given the circumstances. When she asked me 'how long I'd been like that' and 'don't the children mind?' yes I have every right to get a little defensive or cross but then what happens if I do? People then think I have a chip on my shoulder or I'm rude or can't handle it myself. Lose lose situation.

So no the answer is....No, I will NEVER get used to the comments. All I want people to do is think before saying things and if unsure don't say them. It's not about being politically correct or silencing people for fear reactions, it's about respect and sensitivity in my opinion.

Vicki's Triple Challenge

Oh dear it's been AGES again since my last post! As usual life and circumstances have taken over. There never seems to be enough hours in the day, but I guess with a business and home to run, three active children to ferry about and a real change of circumstance for us, with Sean based a long way from home with work and with frequent business trips away, it's not surprising! 

Even more so than all of that has tragically been Sean's Mum's diagnosis of terminal cancer last summer. Devastatingly for our family despite bravely fighting and being determined to beat it, the chemotherapy made her so poorly she was unable to continue with it and was cared for by the amazing Marie Curie Nurses and Doctors at The Bradford Hospice during her last months and weeks. She lost her fight on December 12th 2013 and we buried her two days before Christmas. Not before giving her 'Christmas Day' with all the trimmings. ALL provided by the Hospice. She loved every minute of it, especially having all her family with her and watching her 7 grandchildren dancing and playing under a beautiful Christmas tree. In the hospice's conservatory where she passed away just 4 days later. 

They really are special people who work there and seem to know exactly what to do and say when you feel there are just no words. They make the unbearable bearable.

Because of this I have decided on more crazy challenges this summer! Other family members are also fundraising, including my sister in law who is organising everything from a fashion show to a trek in the Himalayas. She has calculated that Maggie's care cost over £16,000. They need to raise £93 million every year.

Only 7 months ago my friend's husband, Andy, was diagnosed with incurable Motor Neurone Disease. It's a devastating disease and progresses very quickly. Not so commonly known is that Marie Curie also provide support and end of life care for people with terminal illnesses other than cancer, like those in Andy's position.

I dedicate this song to Maggie, Andy and our families. www.m.youtube.com/watch?v=EGLSk3AVcUU Also to my good friend Dawn who is fighting a hard battle right now. When I was running today and just thought I couldn't continue I played it full blast on my ipod and thought of these inspirational people who would give anything to be doing just that right now.

Wish me luck and please sponsor me here www.givey.com/gilbertvicki if you can (I also have a sponsor form) No problems if not and thanks for reading

Vicki x

Latest Venture!

I have posted before about my friend Lisa's son who has leaukaemia. I have decided to put my newest (mad) hobby of open water swimming to good use and raise money for him. I will be jumping into Salford Keys on Saturday 20th July. Any sponsorship would be very gratefully received!! www.fundrazr.com/campaigns/aYVbf

Deja Vu

As I sit in another hospital waiting in another gown to be taken down to another operating theatre I have decided to write a blog post as I REALLY find it cathartic. A few things to share really. I think having been through something like I have is enough to put anyone off hospitals and doctors for life. It's understandable I guess that I'm wary and have trust issues, with people in general but most certainly with medics.

One mention of the word biopsy and it sends me into a spin. Despite not having actually HAD cancer when you find any lump or bump or get a 'different' pain, the first thing that comes into your mind is 'cancer'. Again I think in the circumstances this is probably only natural. But who knows, as there are so few people (thankfully) who have experienced wrong diagnosis and treatment that you can't just google it unlike most things these days! Those reading this who have had cancer will really relate to these feelings of fear and anxiety.

As I say NOT having had cancer is a little irrelevant as I have in essence been through exactly the same process as those who had osteosarcoma and have been treated for it. It only took five minutes for a Doctor in 1992 to blow our worlds apart, delivering a terminal diagnosis implying imminent death and I lived with thinking I had it and being treated for it for nearly a year. It took them 8 years of being pursued by the legal eagles to admit their mistakes.

I guess this explains why such comments as these, that people so glibly make can make me experience a range of emotions from rage to sadness at their complete lack of understanding. 'Oh you must be so relieved you didn't have it' or 'at least you didn't have cancer'.

I mentioned to someone last week that I wasn't 'looking forward' to having this lump removed and my fears were dismissed by their retort of 'oh I'm sure that's minor for you compared to what you've been through.' Even someone close to me questioned what I was worried about as it is 'a minor procedure'. To be honest it's not the type of procedure it's the whole process; admission, visits by consultants and anaesthetists, waiting for the trolley to take me down, administration of an anaesthetic, being roused in recovery etc

It's at times like this when I miss my Mum even more. She would have been there for me. She knows and has herself experienced these fears. I discussed with her about the fact that it's almost worse knowing what's about to happen than the blissful ignorance of not having been through it before. She described it as a weir effect. You've had your fill and can only take so much, we only have the capacity to deal with so much crap aka pain, suffering, worry and anxiety. And I have had my fill, without a doubt. But as we all know though there isn't a choice in the matter and we have to just 'get on with it'. I am taking various steps to deal with all this which I will discuss in my next post.

In 15 days it will be exactly a year since we were advised it was in Mum's best interests to switch her life support machine off. A year ago my brother and I were travelling back and forth to be with Dad at her bedside in Intensive Care. Battling with our emotions, willing her to pull through and get better, worrying about her future quality of life and dealing with the guilt of willing her to go so the suffering would be over. RIP Mum. We miss you x

Unusual

I will reveal the reason for the title of this post shortly but firstly I would like to apologise for my 'blog neglect' these past few weeks. The truth is I have been far too busy! Sean started his new job which has him travelling a lot, not only the commute to Teeside but to sites far and wide. We have been spoilt with his local work this past decade and this new era is going to take some getting used to for all of us. We are though, thankful he has a job unlike some we know.

I also experienced the trip of a lifetime to New York, with my school friends of nearly 30 years. It was to celebrate the year all 5 of us are all turning 40. It was amazing, all we'd hoped for and more! As usual my leg didn't hold me back and we did everything from cycling around Central Park to cocktails in the revolving restaurant 'The View' at the top of the Marriott. I did use my crutches a lot which enabled me to walk further.

There have also been lots of fun days out during the school Easter Holidays and parties to attend, as well as quality time spent with friends. Sean's Mum has also been in hospital for over a fortnight whilst they operated to treat her for a 2nd cancer recurrence. We are desperately hoping this drastic and life changing surgery will put pay to it once and for all. Thankfully she's now recuperating at home.

No improvement with our little man's sleeping which does prove draining day in day out. Hence the nocturnal waking or should I say hours of 'work'.

I have been continuing to trial the running blade https://www.ossur.com/?PageID=16652 You won't be surprised to hear I totally overdid it in the first 3 weeks! So after hardly being able to walk after one particular training session I took some enforced rest and curbed my enthusiasm and am now back at it with less 'vengeance' shall we say! It feels a little easier now, well some of the time and I think I trust it a little more and am perfecting my technique.

Last week I took part in the annual Swimathon to raise money for Marie Curie Cancer Care. Together with my friend Adam and my 11 year old, Hope, we did a Team 5k. It was really enjoyable and of course all for a good cause if anyone is interested in sponsoring us please visit the following link http://my.artezglobal.com/TeamPage.aspx?teamID=54782&langPref=en-CA&Referrer=http%3a%2f%2fwww.swimathon.org%2fpage.php%3fpage%3dsponsor_a_swimmer You can see our photo at the finish below.

Next on the agenda is the 1mile outdoor swim at Salford Keys, Manchester http://www.greatswim.org/events/great-manchester-swim/default.aspx We're mad you no doubt think, but hey, you know me I like a challenge!

I can't believe my 'baby' turns 2 on Saturday. We're all looking forward to the celebrations.

Now, back to 'unusual'. I went for my annual routine eye test a couple of weeks ago. My prescription hasn't changed for years and I still remain very short sighted but manage fine with my glasses or lenses. What I wasn't expecting to hear was I am developing cataracts in both eyes. This currently only affects my night vision but this could change at any time. This it seems is the worrying and frustrating thing. They just don't know, things could deteriorate quickly or continue slowly or even remain static. Worst case scenario is I could require cataract surgery in the near future. I am obviously hoping this doesn't happen but will just have to wait and see (sorry ;-).

I was very taken aback by this latest news and understandably not best pleased. I wasn't surprised though to hear the optician say 'you're very unusual' and that it was unusual to see this happening to someone of 40. Well excuse my French but no shit Sherlock!! And quite frankly I am fed up of being 'unusual' and interesting to medics. I want to be run of the mill, boring, USUAL.

It really felt like 'something else' to add to the list of ailments and parts of me that are failing. As if legs, kidneys, hearing etc are not enough, now my eyes!!! Maybe time for the scapheap?! I REALLY miss having my Mum at times like this. I would be straight on the phone to her and it made me angry that this wasn't possible.

But a couple of weeks on I am more accepting and at the end of the day what will be will be. Onwards and upwards as usual :)

The difference a week makes

A week of real highs and lows. I guess this is what LIFE is actually like, although our peaks and troughs seem to be a little steeper at times than others! I saw an acronym the other day - how true - L. Life I. Isn't F. Flipping E. Easy!

Last week I couldn't even wear my prosthesis for three of the days and this week I have been running. Yes RUNNING!

The unpredictability of my situation does get me down, understandably. Swinging from one situation to another one which is so far removed. Feeling so restricted without my leg on when I am used to wearing it. But this week was a GOOD one.

Years ago I went to a running clinic at Bradford University with two American Paralympic athletes. It was great to learn the basic principles again and felt amazing to actually get both feet off the floor at the same time- even momentarily! But the leg I had at the time wasn't really suitable for running but I did have a little jog :)

Not long after I was nominated and selected to carry The Queens Jubilee Baton in the relay to the opening ceremony of the Manchester 2002 Commonwealth Games. I practised religiously in secret in our driveway and managed to surprise family and friends and my police escort by breaking into a jog with the baton.

Not having the proper hardware, so to speak, made it impractical really to continue with this type of activity. So it has not been in the agenda in a long while.

During a conversation with my prosthetist www.dorset-ortho.com about his work at the Paralympics this summer I asked him if he thought I'd be able to run with a blade. He said he didn't see why not. Yikes! We arranged a trial with Ossur www.ossur.co.uk/prosthetics/feet/Flex-Run and I went to Burton upon Trent to have it fitted.

It was with trepidation we drove to a nearby track. I really doubted I would remember what to do but at the same time was determined to make it around the track....no matter what.

I was also nervous about how it would feel. Not so much physically but on occasion I have pushed myself to do something I did before because I have been determined that the loss of my leg would not hold me back. But it has felt so far from how it did before the amputation that I have almost felt distraught and soooo disappointed.

Thankfully despite being hard work, physically it felt GOOD :) not a let down which was such a relief. With some adjustments at the end it felt even better, with only room for improvement.

As our gym has a track it is realistic to run regularly. So I did, the following day! http://www.youtube.com/watch?v=3VkwN0hezIg

It doesn't feel 'natural', the only thing I can liken it to is learning to drive. Trying to remember and put together a number of instructions all at once. In this case; drive your residual limb forward as hard as possible, increase your stride length, relax your upper body and use your arms, think about your body position, and so on arghhhhhhh! But like driving, it will get easier with practice, in fact it was easier and better even on Day 2 of Blade runner! I was more confident and less worried about ending up on my face!

Today is Mothers Day. I am so lucky to be a Mother AND to have three lovely children. I have had five pregnancies and I do still wonder what those 'other' children would have turned out like especially when their 'due date' comes around.

Going through the IVF because of the worry of a premature menopause and ovarian damage, due to the strong chemotherapy was tough. But I knew more than anything that I wanted to be a Mother. If that meant not being able to have a child of our own and adopting, so be it.

Luck was on our side though for once and despite having the 'insurance' of the stored embryos we managed to conceive naturally. Although it was hard not to think the world was against me, finding out, on what should be such a joyous occasion - the 3 month ultrasound scan - that our baby had died.

When our family was complete and having battled with the hospital to donate our embryos, which against the odds resulted in a successful pregnancy. I really felt devastated to learn the little boy who was carried to term, was stillborn only a few weeks before my precious Joe was born.

Being a Mother and daughter brings with it such highs and lows. Right now I can hear my nearly two year old calling for 'Mr Tumble' on the TV :) that little voice brings joy to our day!

Talking of joy, it brings me to my Mum, on this Mother's Day, the first since her passing. A friend of my father's in an email of condolence was spot on when he described her 'Joy by name joy by nature'.

She taught me so much, not just important life skills but the way to treat others. Her motto, instilled by her own Mother whilst reading 'The Waterbabies', was 'Mrs Do-as-you-would-be-done-by' . They both stuck to this throughout their lives and I hope even in a small way I can continue this legacy.

I find it painful today to think of her and not be able to be with her. An actual physical pain like a punch in the chest, I have felt this numerous times since July 18th 2012 when heaven gained a very special angel.

I know people encourage you to celebrate the life of the person you have lost, focusing on the good memories. Today is just not one of those days; her birthday was, her funeral was but for some reason today I cannot bring myself to visit the cemetery and stare down at a mound of earth.

I hope the good memories will overtake in time, as i have been told they will, but right now I find it hard to rid my over active mind of the vivid memories of those final weeks.

The pain, suffering and injustice of it all. The warmth of her final breaths on my palm through the disconnected ventilation tube. Robbed of dignity even in death. This all led me to visit her in the chapel of rest after all the formalities were over. It was the best decision I could have made. I only needed to glance at her to know that her dignity was restored and she was at peace.

Always in my thoughts beautiful lady, RIP Mum xxx