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

Legless

Well quite honestly there are some days that are just not worth getting up for! And today was one of them. I have had persistent small sores at the top of my residual limb for a while now. They obviously get worse the more I wear my prosthesis so it's a vicious circle. The tissue viability nurse stocked me up a while back with an impressive array of dressings. It's a bit of trial and error as some don't stick enough so are dislodged with practically the first step, whilst others are so adhesive frustratingly they lift the 'good skin' off around the original lesions = worse situation :( this week I totalled 4 dressings at once but have had to give in to the 'legless' status by yesterday as it's just too uncomfortable to put my weight on the leg. The pain from one if them is disproportionate to the size of it and I suspect I will eventually have to succumb to seeing someone about it.

I can usually live quite happily being an amputee but if I'm honest sometimes I HATE it. I hate going out without my leg on and trying not to look at the people staring at me. I hate the pain in my elbow being on the crutches and in my other knee from whizzing about at home in my wheelchair. I hate not being able to pick my son up when he puts his arms up to me when he doesn't understand. Although he seems to be starting to grasp it (he'll be 2 in May) as today he was looking all round my wheelchair and said 'shoe gone' and signed 'gone'! I hate the fact that my daughter said 'yeah we can't do the things other families can do'. I never want them to feel I hold them back. I hate that when I went to their school today and my son's class ran past they stopped in their tracks open mouthed and one little girl said 'eeeewwwww'. Yes they're children, but it still hurts....... I hate the unpredictability of the situation, that one day I can go in the gym and the leg's ok and the next I can be so restricted because I can't wear it. I hate to catch sight of myself in a mirror or shop window when I'm not wearing it. It doesn't do much for the body image! I hate that it makes me a nervous person and takes my confidence away.

So maybe I don't help myself by being on the go a lot and wearing the prosthesis long hours but hey there's so much to do! And I'm really not one to sit around. So that's it, rant over. I have had my moment wallowing in self pity. Of 'why me?' Of 'it's not fair!' It will pass but I am under no illusion that this is the last time I will have to leave my leg off or that i will feel this way.

I used to feel guilty that I wasn't 'over it' or hadn't 'come to terms with it' but now I try not to feel that guilt because I honestly think at times, for example every spring bank holiday when I can't jump in the waves at Whistling Sands with the children. That I will grieve all over again and shed a little tear. And hey, that's ok.

I don't mind the legless jokes ie the alcohol fuelled ones, or someone saying 'he didn't have a leg to stand on' anyone who knows me knows I would take these in context and laugh along where appropriate. I don't want people treading on egg shells around me but it is nice if people realise the reality is it's bloody hard sometimes.

If it hadn't been for meeting Adam to kill another mile in the pool tonight I would definately have pulled the duvet over my head and written today off!

You see...I did promise!

Well you see I AM keeping one of my New Years resolutions to update my blog more often! A number of things these past few days have spurred me to do so.

I am so thankful for the advances in technology since I was at Uni (yeah OK OK i hear you...it was over half my lifetime ago ;-) that helps make our world a smaller place. That enables me to 'see' my Dad over Skype and we can talk about the frustrations of his day and the last person he sees doesn't need to be the cat.

Being able to text a good friend during what was her nighttime, in response to a facebook post, as she was worried and unable to sleep.

To access information especially on Youtube such as this song which a friend shared http://youtu.be/sDC97j6lfyc by Zach Sobiech, a young american dying of terminal bone cancer. It certainly makes you thankful for what you've got.

But also the personal touches, some of the face-to-face stuff, that still make our messed up world a better place, such as my 'Big Sis' and the meals and cakes she leaves for my Dad, she is not just 'Meals on Wheels' he calls her the Angel on Wheels, I am inclined to agree.

Or my very small boy, not even two years old, for the first time saying 'Love you' and kissing me spontaneously.

The elderley woman who saw me struggling to my car with a big bag of shopping and rushed to help me. We had a laugh as she couldn't even lift it but said we could have taken a handle each :) It's sad that when I haven't got my gym kit on and you can see my leg that all I get going to my car in the disabled parking bays is tuts and stares and even comments that i shouldn't be parked there. I wonder why people make such assumptions based purely on appearance and assumption......

The giggles from a little girl who I work with, who is a similar age to Joe, who has a very rare chromosomal disorder and many associated problems, as Signing Sam our resident signing puppet tickles her.

How seeing old friends, who were visiting from Australia, no matter how long it is between visits, the years melt away and it seems like yesterday (the technology of course playing a huge part at keeping us in regular touch)

Making crowns with three small boys

Visiting a very dear and old friend and meeting her new baby

Taking 5 children to a panto and shouting very loudly 'Oh yes he does'! (amongst other things :-)

Helping a very grown up girl, but still my baby, prepare for forthcoming exams (having to mark questions I'm errrr not so sure about ;-)

Having a family of 3 children, all who have learned to sign with me over the past 6 years, attend class, together with their signing puppets!

Here are some other blogs you may be interested in reading, some new to me and others are not, that have resonated with me recently.

It is 2 years this week since my friend Lisa embarked on an exciting new life on the other side of the world in Australia. Only to arrive in Brisbane in the middle of the floods and two weeks later to have her youngest son diagnosed with leaukaemia. They are now more than 1/2 way through his treatment and he is faring as well as can be expected but they have been to hell and back already and sadly probably will be again in the next 12 months or so, before the first stage of this nightmare is over. Follow their story here http://barrattsadventuresinoz.blogspot.co.uk/?m=1

A fellow baby signing teacher very sadly lost her baby over half way through her pregnancy due to her and her husband, unbeknown to them, being carriers of a gene for cystic fibrosis. You can almost feel what she's going through from her insightful writings www.teamlloyd.com

And the aforesaid welsh friend also living in Oz is a joy to follow on her blog http://awelshgirlinaus.blogspot.co.uk/?m=1

At times this week I have felt utterly crap, physically and mentally. My left knee hurts because of overuse, my right arm is shocking, again due to repetitive strain and at times I can hardly put the weight on my stump because of the sores. I am trying to take the diclofenac as infrequently as possible as every other person I meet is telling me how bad it is for me. I am trying, but failing, to convince myself I do not need to have the operation on my hip to repair the torn cartilige but 2 1/2 years on from diagnosis it's no good. I need to get my head (and schedule) around going down for a consultation with the consultant in London, then the surgery followed by 4 weeks partial weight bearing...on a prosthesis. But in the meantime I am doing (can't quite say always enjoying!) the exercise but helped along by friends like Adam I WILL keep going and am going to try returning to boxing next week.

Well my friends, all I can say is live life for today, despite all the challenges you face and frustrations you feel, because who knows what tomorrow will bring.