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

Legless

As I've already mentioned I have been 'legless' on numerous occasions this week. I thought you might like to share this picture. I went to the Gym and Pool with my swim buddy Vicky one evening this week when she saw the state of my stump she decided to put her day job Doctors hat on, take charge and carry my 'Magic Leg' (as my children call it) back to the car whilst I used my crutches. That's what friends are for :-)

Part 3 - First Chemo

It was Monday 23rd November and whilst in the ambulance on my way to Cookridge Hospital to begin the first chemo, I read my notes which had been left on the gurney. I read that there was possible evidence of metastases disease to the chest. I of course didn't know what this meant so thought no more about it. The fear of what I was driving towards was enough. It transpires that a couple of days earlier Mum and Dad had been told there wasn't any evidence of further tumours but a possibility of secondary carcinoma in my lungs. They decided not to tell me at this stage, as quite rightly they thought I had enough to cope with.

I met my Oncology Doctors on arrival - Dr Lansbury, a registrar and Mr Taylor, the consultant. Mr Taylor really lacked a sense of humour and whilst they were explaining my treatment to me and the side effects (ALL hair loss a certainty :( ) I made a bit of a joke to try and lighten the atmosphere, about not having to shave my legs for while, which was met with a blank look.......

Within a couple of hours of arriving they began to administer the first dose of chemo. The hospital was very depressing, it felt like an old people's home or hospice with everyone shushing each other. A far cry from the busy, friendly ward at the LGI. I found the nurses odd and was petrified the first night as they left the window open, having already told me they sometimes got bats! Great. I was plugged into the electricity with numerous staples in my leg so couldn't even get up to shut it.

One of my most vivid memories is eating virtually a whole tube of plain pringles (the red one!) before starting treatment, boy did I regret that a couple of hours later when the sickness started and the whole lot came back. It was nearly ten years before I could bear the smell of them let alone eat them.

The treatment lasted 4 days during which time I was permanently hooked up to a drip of saline, whilst they intermittently injected the chemo drugs Cisplatin and Adriamycin directly into a cannula in my arm. I cannot begin to describe how horrendous the treatment was. I became violently sick very quickly. I remember people coming and going during the treatment, sometimes I was lucid and could converse and other times I couldn't work out afterwards whether I'd dreamt things or they'd been real. I was recently reading about these drugs and this is some of the information that is available "unfortunately (they) don't know the difference between the cancerous cells and the normal cells." How true! Unfortunately the anti sickness drugs were useless and I vomited approximately 1/2 hourly, until there was nothing left (Or should I say no pringles left!) and then I wretched 1/2 hourly. My veins collapsed and they resited the needles. I developed painful mouth ulcers, sore throat, fever, lost a lot of weight very quickly and waited for the hair to start falling out............