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.

As a new year beckons

I have neglected my blog for far too long but life has somewhat taken over shall we say. One of my resolutions for 2013 is to give it more attention, maybe having the added bonus of it being a real catharsis when I do write it.

I can quite honestly say 2012 has probably been the worst year I can remember since 1992/3 (nothing to do with turning 40 of course ;-) . When I was diagnosed with cancer, underwent all the treatment and subsequently discovered it had all been unnecessary, due to a wrong diagnosis. Or 1996 when I finally had my leg amputated.

This year, as well as the usual struggles, stresses and strains, that come with daily life, a family and running a business. There have been far too many hospital visits and stays for our immediate and extended family, culminating with 6 year old Jack having surgery for a badly broken arm at the beginning of December.

Sadly once again we have repeatedly been let down by the NHS, not even just the usual inefficiencies and waits but lies, incompetences and much more.

In amongst that however we have met and been supported by some fabulous nurses and consultants who as they say 'have gone above and beyond'. Sadly they have not 'restored the faith' but reminded us of the human element of this system.

The past 6 months with Mum's hospital stay and subsequent death, after a very traumatic spell in intensive care has pushed us all to the the limit at one point or other. Being part of and waiting for lengthy investigations to take place has been a living hell

To have her so cruelly taken was heartbreaking. I cannot describe though the swell of pride I felt for my most amazing role model, as I delivered her eulogy in her village church where there was barely standing room left. Or when I watched my father accept the degree posthumously on her behalf that she so very nearly finished.

One thing she would have been exceptionally proud of is how close it has brought my Dad, Brother and I. We have pulled together through this nightmare and are starting to come out the other side. Things will NEVER be the same without her and it is hard not to feel bitter and angry standing in a cemetery, in the pouring rain, whilst placing a tinsel covered wreath made by three little children who miss her terribly.

This couldn't have been done either without our other halves quietly propping us up throughout it all.

I also give thanks to those friends who have provided what we have needed, when we have needed it, often when we have not even known what it was! A card, a hug, a casserole, child care, a costa coffee!!! And as for those who haven't, well as they say people come and go eh, even those you least expect.

I must move into the New Year bearing in mind a quotation from the book 'The Life of Pi' ' “Things don’t turn out the way they were supposed to, but what can you do? You must take life the way it comes at you and make the best of it.’’

Here's wishing you all a very happy and healthy 2013, with the strength to face all that life throws at us.

Only a small cut......

....makes or breaks things...when you're a leg amputee.

Often there's no reason it's happened, nothing's changed, you've put your leg on like you did the day before, you use the same lotions and potions, do the same activities and yet....when you take the leg off it looks like someone's been at it with a cheese grater (and one of those cheapo ones too so they're even sharper ;-) 

In reality the only way it heals is leaving the leg off. Errrr not possible with a nearly-one-year-old, two big kids and an active job. Ha, forget the optional extras like going to the gym. The thoughts of going to pick the cat dishes up to feed them makes you wince just thinking about it, not to mention lugging a 11kg baby on your other hip!! This isn't being dramatic either, it's just REALITY. 

The most frustrating thing is the quick change. From being able to be so active to being so incapacitated literally overnight. I KNOW it's my own fault too as I dared say to the osteopath yesterday how difficult it must be, physically and psychologically, for those with a progressive,  changing impairment as 'mine is pretty static and I know what I'm dealing with' - famous last words.

People always suggest plasters, padding, dressings etc and this is a good idea but from years of experience I've found they have to be small enough to be able to get on the awkward shaped end of the residual limb, sticky enough to stay in place in the warm, damp environment BUT not too sticky that they rip the rest of the skin off around them on removal OR disintegrate over the course of the day. Padded enough to provide some cushioning but not too padded that you can't get the intimately fitting liner over the top! So, yes, a minefield in other words! Off back to the chemist and docs shortly looking for solutions. 

I guess the only thing I can liken it to is a popped blister on your heel where your shoe has rubbed and the skin is red raw then you STILL have to wear the same shoe, with no added protection. Errrrr x 10 :-) 

It does worry me because as times goes on, with, dare I say it....AGE (OMG yes I am FORTY this winter!) the flesh and muscle lessens and the skin thinner, no matter what you do, therefore the bone protrudes quite a lot. And there's NOTHING you can do about it. 

So, you may say, get used to it, it's life as a leg amputee and the reality is these times will become more and more frequent over the years. Well it is easier said than done because you DO get on with life, manage, have an equilibrium of what you are able and are not able to do, then POW out of the blue, not anymore. You have to rethink your activities, how you'll get places, even seemingly simple things like walking the children round to school from the car park. It makes you frustrated and cross. I know it won't be forever, this is short lived and there are of course people far worse off but 'bad leg days' STINK.

Oh well at least I actually sit down for once, with sleeping baby on lap and actually have chance to update this blog on my iPhone! 

Thankfully I have such a good other half and friends who take some the stress away.

I was listening to a great radio show the other day with an ex marine injured in The Falklands who picked  Chumbawumba's 'I get knocked down and I get up again' as his final song choice. Brilliant! It's definately my new mantra!

Jolly Holidays?

Hi All.

Yet another absence but not so long this time! We have spent a lot of August away from home. Firstly on a two week family holiday in Northumberland, then after a short trip back to give the washer a hard time we were off to Austria for me to work for a couple of days, with the family in tow and the lovely Sean acting as baby sitter!! I think it was more like herding cats! So I hear many of you say, how wonderful to visit these places etc Yes it is and don't get me wrong we've visited some lovely places and had a fab time and I am very appreciative of this but.....ha, you knew it was coming didn't you?! This is probably going to sound like a big moan, it's not meant to. One of the reasons I started this blog is that it's cathartic for me, especially when I'm feeling angry, frustrated or upset about the situation I have found myself in. I have been wanting to write this post since coming home after trip No.1 of the summer. I know many people feel down and a bit depressed after returning from their 2 weeks in the sun, especially when having to return to work. Well my 'blues' are a little different.

I find it really tough to get going again and feel positive. When we go away I'm suddenly like a fish out of water. It really brings it home to me all over again how tough things are at times. I get lulled into a false sense of security when at home in my bungalow with my level access, ramp etc I can jump out of bed straight into my chair, sit down in the shower and NOT have balance myself plus shampoo and all that parphenalia around myself. Then only to knock the shower gel off creating a domino effect, bend down precariously on one leg bang my head on the soap dish, slip over bang it again and the rest of the family come rushing in at the crash to find me in an undignified heap! Not to mention doing this in a shower cubicle at a campsite after having waited half an hour for the end shower with the bench next to it so I can take my PJs off and not get them covered in mud. So yes it is manageable but at the same time frustrating and exhausting.

I forget how set up I am at home to 'manage' with things, like the high changing table for changing Joe's nappy as kneeling on the floor is possible except when having to get up again...holding a baby or that I can't even get him out/in a travel cot during the night when he's right next to me. I guess one of the things that's hard to accept is constantly having to ask for help which I HATE.

I know I can do so much but there's no disguising the fact there's so much I can't. When I'm in a known environment I know where to park to get close enough and don't have to worry that I can't drive a car like I do abroad (I find myself wishing it was my left leg??!!! Or even below knee when I'd be able to do so much more!!! Really.)

As those of you who read this who know me realise I am not the deck chair sitting holidaymaker by choice and would be doing every possible activity given the choice!

This year I was able, for the first time in 15 years, to paddle in the sea...with my children  Again a double edged sword. Wow, I loved it and have been looking forward to doing so for so long. But the reality is it's not doing it how I want to. Jumping the waves like a big kid and how I remember it. Now it's walking down there with a locked, stiff leg and hanging onto the hands of my 5 and 9 year old, a little worried about being knocked over by the force of the waves. Whilst trying to ignore the stares of those around me. Jack made me laugh though shouting 'Mum I love your Moody leg' (those of you who are Harry Potter fans will recall Mad Eye Moody and his false leg in the goblet of fire!) Part of me felt so sad. They were asking me if I was excited which unfortunately however hard I tried was tinged with such disappointment. Grieving I guess. People ask me how I came to terms with what happened to which I always reply 'you don't you learn to live with it'. Which I suppose it gradual and will never be 'easy'.

Getting wheelchair assistance at the big airports is the sensible option as through experience when you fly from the furthest gate from check-in whilst refereeing 3 children AND trying to explain to security why you're setting off all the alarms (bad enough in English never mind in another language!) leaves you good for nothing by the time you reach the other end. But the repeating of 'is it for you?' and looking me up and down numerous times always leaves me weighing up which type of stress is preferable to deal with!

None of this will stop me travelling, staying in new places and enjoying other cultures but this time on my return I'm finding it a little more difficult to pick myself, dust myself down and get going again. The reality, especially now with problems with my left leg, is being faced with making better choices about accommodation and other aspects of the trip. Sadly it often takes away the sponteneity and makes Vicki a dull girl! I don't suppose the longing of hiking up that mountain or joining Sean on the mountain bike trial will ever go away and accepting that it won't may in the long run be more healthy than thinking it will. So, now that's off my chest, away to plan the next trip! 

Long time no see!

Well as you will see I haven't updated for...ever! Sorry. A LOT has happened in the past few months. The most exciting thing has been the conception, nuturing and arrival of Baby Joe! He was born on May 4th at 3.14pm weighing an impressive 8lb 8oz, Another home water birth thankfully. He is the spitting image of his older brother and sister, who, of course love him to bits!

I guess the truth about the main reason for my prolonged absence is not so much the lack of time but me being a Worrywart! Methinks 'I can't blog yet that I'm pregnant, it's too early' then 'I just want to be sure everything is OK with the baby before I announce it to the world' then 'I will wait until he is safely here' and so on until so much time has passed any followers will think I've dropped off the face of the earth! Well I haven't and promise to 'finish my story' as well as keeping people abreast of the latest dramas in the Gilbert Household (you won't be disappointed lol!)

Pardon?

I have had high frequency deafness ever since I had the chemo. One of the drugs - Cisplatin - contains platinum, a heavy metal which causes neurological damage, including hearing loss. Tinnitus is also an added bonus and can become very annoying. In the past few months it has become more and more difficult to distinguish words especially when there is any background noise, especially in a pub or restaurant or the washer is on at home etc The vertigo is also errr interesting shall we say! Not to be recommended.

I had another hearing test at the hospital where they kindly reaffirmed what we already knew but were unable to offer me anything as their 'normal' hearing aids won't do anything at the frequencies where I experience loss. I felt very despondent upon leaving the hospital, as it really is becoming an issue. After doing some further research I found there are hearing aids but they are digital and blue tooth technology. So it all fitted into place - there are aids which can help but the NHS won't or can't fund them.

I visited a private clinic locally where I had another test and also tried a hearing aid. WOW even set to 1/2 the 'normal' frequency it made a real difference it sounded like everyone was over pronouncing their Ts and Ss and also made me realise how much I do actually lipread and say 'Say that again' or 'I can't hear you'.

It's a bit of a double edged sword really. I'm pleased there's something that I can get which will help but at the same time cross because I'm left in this situation unnecessarily. Fact is I can't turn the clock back and I've just got to get on with it.

Bizarre that I ended up teaching signing and am now going to have hearing aids! It'll be great for the deaf children in my sessions though (every cloud has a silver lining and all that, right?!)

So tomorrow I'm off for delivery and 'programming'! The aids are small and discreet (I'll post a pic) so we'll see how I get on.

Thank goodness I have the compensation and this is exactly what it's for, but how wrong that you can only get help for this is you can pay for it!!! Same with many medical matters sadly.

Vicki

Latest Shananigans!

Hi All

Sorry for absence...lots to keep me busy....work, family, house and the latest round of hospital appointments!

And the hospital appointments is where I'll begin. Something which many will not realise is the long term effects of the type of chemotherapy that I was given - infertility, neuropathy, vertigo, deafness, possible heart problems, increased risk of other types of cancers, kidney damage...to name but a few. And yes, you guessed it I've experienced/am experiencing most of them. I think the thing which grates on me sometimes is the fact that I had all that treatment unnecessarily. I'm sure that if you HAVE cancer and the chemo saves your life these things are incidental or should I say tolerated. But when you didn't and never have had cancer it is an even bigger blow to take. The reality is I am left with these long term irreversible side effects - fact. So I do need to just keep going to the appointments, have the monitoring then discuss and undertake the next course of treatment to deal with these things. I just think it makes the daily 'living with it' more difficult sometimes. So coupled with 'a bad leg day' sometimes I do feel like chucking in the towel. My newly found...or should I say refound (is that a word?!) addiction to exercise is helping I think. Ooooo that rush of endorphins is only comparable to a few things. Although after tonight's Boxercise I may be rethinking that! See how the arms are tomorrow!

Unfortunately when the Bone Tumour Service at The Royal Orthopaedic Hospital in Birmingham realised they'd made one almighty cock up i was dropped like a hot potato in terms on follow up. Hello....I may have had a benign tumour but I still had exactly the same treatment as someone with a malignant one!

Luckily one of the Social Workers there had a counterpart at Leeds who she contacted and I was slotted into the service here. I must say they have been fantastic ever since, always there if there's a problem and seeing me regularly.

Last week I went for my annual heart echo scan to establish if there is no cardiomyopathy (enlargement of the heart) which is a side effect of the chemo and can unfortunately occur at any time post chemo, regardless of how much time has passed, hence the requirement for long-term follow-up. I arranged for my Mother-in-law to sit with my son whilst I travelled to the other side of Leeds. I always ask for a woman sonographer in advance, as it is rather embarrassing having to strip from the waist up. Well guess what, surprise surprise, there wasn't one available. If I'd come 10 minutes earlier...errr my appointment isn't for another 10 minutes. To cut a(nother) long story short after being asked by a nurse in a very loud voice in the middle of a busy waiting room 'why I was embarrassed?', being given the options of 'hanging around' (for a couple of hours!) or coming back I burst into tears and had to have the scan anyway, but they were kind enough to give me a gown....

Why didn't I complain?....a couple of people have asked. Well, firstly, if I complained about all these incidents that happen I'd be branded a serial complainent! Secondly, I can't be bothered as I just want to forget about it and thirdly nothing is ever done anyway and you're labelled 'a trouble maker'.

Oh well, hopefully won't have to go through that again for a few months.

I will be back soon to update you on my hearing problems and to continue with the story of how I ended up in this situation

TTFN