Thursday, 29 July 2010
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.
Wednesday, 28 July 2010
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
Friday, 2 July 2010
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 :-)
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............
We've been busy at 'Babies Can Sign' my teaching business (click on the yellow logo on the right to find out more) because it has been Deaf Awareness Week. We have been signing stories and singing songs in libraries to promote sign language and communication with deaf people, as well as using signs to communicate with children. It's been a successful but manic week. At this mornings session I had about 25 children and as many adults!! All good fun though! It has also been extremely warm, which my leg sadly doesn't like. I've taken it off at any opportunity this week to try and rest the skin, which of course helps.
I guess flesh is not designed to be enclosed in a hot, sweaty, tight environment certainly not for 16-18 hours a day. All I can say if thank goodness it's Friday 'no more working for a day or two' well Monday to be precise! Top left is a consequence of the busy hot week :( Sorry it's graphic but it may help to 'educate' those who think that you have an amputation then get a false leg 'hey presto', all sorted! Sadly it doesn't work like that and people in this situation regularly battle with this type of problem. I now know it goes with the territory and is part of living with an amputation, end of.
What does make me mad is that next year my Disability Living Allowance and entitlement to a blue badge is up for review. I was awarded it for 10 years. Obviously the bureaucrats know something I don't....miraculous leg regrowth maybe?! The amount of people I come into contact with who have been awarded it for life. There are days I can't wear it due to problems like this week and others when I manage to because I have to but struggle to walk. People make assumptions when they see me walking about that I don't need to park in a disabled space, some challenge me and others give dirty looks and make comments. Soemtimes you do feel tempted to say things like 'well you'd park there if you'd had your leg chopped off' or show them photos such as this, but why should I. It's none of their business and I do not need to explain myself to ignorant total strangers.
Well, another rant over!!! :-) Off for a glass of vino and I'll be back soon for the next installment
Saturday, 26 June 2010
I don't actually remember how my parents told me I had cancer all I remember feeling was as if I was up on the ceiling in the corner of the room watching this drama play out as if it was someone else. I remember very quickly asking 'am I going to die'. They were so honest without wanting to frighten me (my Mum can never lie! When I was a teenager and someone rang who I didn't want to talk to the only way she'd say I was out was if I went and stood outside the back door! :-) They told me they didn't know but they hoped not. Much later I found out the real news they had been given. Unfortunately both Mr Belchetz and Abberton had gone away and left a registrar Mr Tulwah to break the news. He told them bluntly I had a rare form of bone cancer, it was terminal and I was going to die. When Mum asked 'what are you talking about months, weeks, days?' he replied 'the latter I think and would you like me to tell her?' Errr maybe not!
The nurses on the ward were all quite young and so lovely. They had already spent a long time chatting to me and laughing about the numbers of visitors I was getting, threatening to sell tickets! It all fitted together why they had been so quiet that morning and two of them, including the sister had obviously been crying, now I knew why.
Very shortly afterwards a porter came to take me for a CT scan. The LGI is a very bizarre place, at that time the radiology department being in the bowels of the old part of the hospital, down corridor after corridor. It was a very surreal journey, we passed the hospital chapel and I remember thinking should I go in there and pray, but what for? Apparently whilst I was being scanned a consultant radiographer found my parents in the corridor, quite obviously devastated. He took them in his office and asked what they had been told, at which point he could barely contain his fury and asked them to request My Tulwah called him at his home that evening. He reassured them there were things they could do.
The mood was certainly lightened when we returned to my room to find 3 of my fellow class mates waiting for me Andy P, Nathan and Steve along with a carrot and other vegetable arrangement on my pillow....a good alternative to grapes! We all had a real laugh about it and then I very casually broke the news to them 'I've got cancer'. There, said it. The poor lads didn't know where to put themselves and after making as many of the right noises as they could think of made a swift exit, who can blame them?
I also have no recollection how or who broke it to my boyfriend at the time (Dave) but I do know they let him stay with me at the hospital and the nurses spent a lot of time talking to us.
There began a frenzy of activity - being taken for test after test after test. After being pumped full of radioactive material I had a bone scan in nuclear medicine, to establish whether the cancer had spread. Again this was in a dark basement department lit with artificial light, with no windows, it now really felt like I was trapped in a prison with no idea when and if I'd ever escape. I lay on my back on the table with Dave holding my hand crying so hard the tears where pouring down my face and filling my ears! I do have a vivid imagination (like Mum!) and just imagined the cancer being everywhere in my body. How wrong I was, about escaping...well sort of....I was popped in an ambulance and taken to St James University Hospital (the then well known Jimmys of TV fame). I was on a gurney and hated everyone staring so pulled the red blanket over myself and thought I wonder now if people will think I'm dead!! My first MRI scan followed to establish the extent of the tumour. It was now Friday less than 5 days since I'd been driven to hospital.
During the next couple of days it emerged that there was a protocol of treatment for those diagnosed with an osteosarcoma. The supra regional centre for bone tumours at The Royal Orthopaedic Hospital in Birmingham treated patients such as myself. It entailed 3 sessions of chemotherapy (the type where you're plugged into the electricity for 4 days on an IV drip) followed by extensive surgery to remove the diseased bone and a certain amount either side. In essence a knee replacement with much of the bone above and below also being replaced by metal, muscles being moved around and tendons reattached etc. A further 3 sessions of the chemo followed. A real prospect to look forward to....but I guess a welcome alternative to what my parents had been told originally. Patients were able to have the chemo in their local hospitals and travel to Birmingham for the further biopsies, scans and surgery.
I wanted to tell those close to me the news myself, which was hard for all of us but better that way. Also the phone isn't the ideal mode of delivery but needs must. The worst phone call I had to make was to one of my best friends, Lorna. She was studying in Sheffield and we regularly made trips back and forth from West to South Yorkshire for nights out. All I could picture was her student house, the glass partition doors between the kitchen and lounge and asking her to go through those doors as I needed to talk to her about something serious. It's wierd though because you somehow find the strength to be cheerful and positive to try and lessen the blow to those who love you.
On the Monday I was to be moved by ambulance to Cookridge Hospital (also in Leeds, although it no longer exists) to begin my first session of chemotherapy. One week on from becoming a 'patient', a name, a number, a condition and things were about to get much worse........
Friday, 25 June 2010
I was 19 years old in 1992 only a couple of months in to my 2nd year at Leeds Polytechnic (Carnegie) studying secondary physical education. I had been experiencing pain in my right shin for a number of months, photographs show that summer of my 1st year me wearing a tubigrip. It kept being put down to overuse as we were doing so much sport. As well as the physical side of my course I played volleyball, football and lacrosse regularly. I was one of the founders of the women's lacrosse team and club captain that year.
Eventually in the Autumn Dad told me to get a private referral to a consultant as the GPs weren't referring me on the NHS. Luckily I was still covered on his healthcare policy.
After consultation scans and x-rays I was told by an orthopaedic surgeon, Mr Abberton, at Leeds General Infirmary (LGI) that I had a bone cyst in my tibia (about the size of a conker), which it was unlikley they'd do anything about. The pain worsened over the next few weeks, some days bearable and others I was using crutches for support. He eventually referred me to an Endocrinologist, Mr Belchetz. He decided the problem may be Hyperostosis (rapid bone growth/replacement). I was given an IV infusion as an outpatient and packed back off to my student house. The pain worsened over the ensuing days and I began to feel unwell. I played Lacrosse on the Saturday and remember feeling relieved when a player's stick broke so I could catch my breath. I worked at the Sports Centre on the Sunday and was barely able to sleep that night resulting in me hardly being able to weight bear on the Monday morning. So off I went to lectures on the crutches again and called my Mum at lunchtime. She told me to go to the hospital and basically camp out in his office until they did something. She was on the Wirral and I was still in Leeds.
Mr Belchetz Secretary told me to go home and wait for someone to call me. It was late afternoon Dr Belchetz called me and said he would come and visit me, which he did about 7pm. He examined me and said he wanted to take me to the hospital to be admitted. He called the hospital and said 'I have an acute case I need a bed', I packed a bag and he put me in his Mini and drove me to the LGI - very surreal when I think back! Quite scary too.
I was admitted, had a series of blood tests through the night and was told I ould be having an exploratory operation the next morning. My parents were going to make their way over then.
Tuesday morning I was taken to theatre and when I came round Mum and Dad were there. They found the cyst was ready to burst so was drained cleaned and packed with bone chips and I was stapled up. I have about a 4 inch scar on my shin. Afterwards (a long time afterwards) I learnt that Mr Abberton had told my parents 'it was nasty but doesn't look like anything sinister' they clung to this. We were also told bone cultures had to be grown from the biopsies and it would be about a week before I got any results so we prepared ourselves for the wait. Thursday came and so did my parents, much to my surprise as they weren't due that day. They were having to also be at home caring for my 15 year old brother James. They said they needed a word with the doctors. It transpires they were called and asked to come to the hospital. When Dad asked if they had the test results he was told they weren't prepared to discuss them over the phone. Mum always tells me how they drove along the M62 worrying and speculating, wondering if I had Leukemia but she saw a rainbow and said to Dad 'there's a rainbow it means she'll be OK'.
They seemed to be away from my hospital room for hours, luckily I had one of my lacrosse friends Hazy visiting. When they returned, how they brought themselves to open that door I really don't know, although as a parent with a child with her fair share of health problems I know that somehow outwardly you find the strength from somewhere, despite the inner turmoil. That day was to change all our lives forever.........
Those of you that have been in this situation will understand the title of this post, those of you who haven't may have been with someone who has or this may be an 'eye opener', which is what a friend/colleague said to me last weekend when we flew from Leeds to Gatwick and back.
I seriously could write a whole blog on my 'interactions' with others whilst in this situation!
Yes I can walk and on good leg days (don't get me wrong I have more of these than bad ones) I can walk a reasonable distance. When I'm flying into an airport which I suspect will be quite big, which means a very long way to walk, I prebook a wheelchair - believe me I learnt the hard way!! I did this when travelling to a conference last weekend. I was VERY glad I did because sure enough it was MILES to walk with lots of slopes etc BUT the minute you sit in that chair many people either:
Are too embarrassed to look at you
Stare at you to try and work out why you're in it
Pat you on the head (yes really :-O )
Speak to you as if you're deaf or having learning difficulties
Totally ignore you
Repeatedly ask you 'what happened to you then?'
Apologise to you (!) when you run over their foot with the chair
I won't go on......
There are some advantages:
You get through check in, security and onto the plane quicker
But the first important job's worth I encountered this time broke off from taking another passenger's boarding card to 'get rid of the wheelchair'. Another continually man handled me and my belongings, kindly pushing my elbows against my sides when going through the mag and bag and trying to pull me out of the chair at the other end.
The thing that winds me up about this is, how hard is it to ASK someone if they need help?!
Why, just because I park my bum in a chair with wheels or use a pair of crutches, am I treated SO differently than if I walk through, even if it is with a limp?
Some may think I'm a snob to join a private health club/gym but I've tried going to the local sports centre again recently. I was a member of a private one for years but felt I couldn't justify the monthly fee as I wasn't using it enough due to work and family commitments. Another reason is because I'm into swimming many of the private ones have postage stamp size pools which make you dizzy from tumble turning every few metres. I have been going with a friend and swimming during the adult swim session at the local pool in the evening as any earlier the stares and pointing from the balcony are a little off pointing every time you take a breath. Sure enough though only on visit 2 I was using my crutches to walk in (they are collapsible ones-not when walking with them I might add!-so you can carry in a bag www.chicaidcrutches.co.uk) and a guy at the desk laughed and quizzed me saying 'I'm intrigued as to what sport you're going to do here this evening'. I dutifully ignored him while my friend picked her jaw off the floor and we got changed. There he was again as I approached the pool (this time legless using the crutches) each lane is labelled either slow, medium or fast, you've seen the signs right? He very kindly pointed out 'do you know that's the fast lane?' I thanked him and said I did. Needless to say he never said anything else to me!! Well, to give him his dues, I saw him approaching me again as we got in the car BUT he actually apologised to me. That doesn't happen on many of the occasions believe me....
The thing that really winds me up about these situations is that you cannot get angry, be rude or say anything back, as it evokes the reaction 'well there's no need to be like that' (Hello?!) and the assumption you have a huge great chip on your shoulder cos you're disabled. Lose lose situation.
Oh well rant over! My friend and I decided though on the next visit to the pool we'd do a 'Little Britain' and she would push me in the poolside wheelchair, hoist me in, much to the dismay of those averting their gaze then WHOOSH I'll be off!
Monday, 14 June 2010
Just a little explanation. The whole thing was a farce from beginning to end, from being told I had cancer, it was terminal, my parents being told I'd be dead within the week to being diagnosed with metasteses in my lungs (which were finally explained away as bronchitis scar tissue?!) sooooo I have always said it's like a 'Carry On Film' ie 'Carry on Cancer' so, there you have it V x
This is where I go and spend HOURS on end waiting for 'my magic leg' (as the littlies call it) to be fixed www.dorset-ortho.com Yes joy oh joy it's the place Dear Heather also graces with her presence. If you can bear it I'm sure the site is adorned with her mug shot as Bob Watts the owner is quite possibly her No. 1 Fan! Thankfully they have opened a Northern Branch near Derby (the other is south of Southampton) but even so I really really cannot be bothered to go :-( Probably because I've done non of what I should have this evening as I've been writing this!)
Anyone who fancies chauferring (sp?!) me or even paying for one, any offers most welcome.
Night then folks. V x
Well, I suppose it's for these reasons (and no doubt many more I'll think of after I've posted):
1 - there was no such thing as blogs when I was 19 ha ha (How old do I feel?!) I don't even think there was email and DEFINATELY no facebook!
2- I still live with the consequences of the misdiagnosis day in day out on a physical and psychological level it's never over
3- there are MANY people who have cancer and thankfully a good number who survive but very few in my situation who are diagnosed with it, treated for it but are then told all the treatment was unnecessary and they never had it. I have to undergo long term follow up monitoring and treatment for life due to the grievous treatment I received, just like those who did have and have been treated for the condition. Maybe one day this will help someone in a similar situation to me (although I do hope there are not many others out there)
4- contrary to some peoples beliefs NO amount of money - compensation - can bring back my leg and the life I should have had. That doesn't mean I'm not happy with my life now and don't appreciate what I have.
5- it's not just me that is affected but my family, friends and my children, people tend to forget this.
6- Doctors who have been proven to make mistakes such as they did with me should NOT still be practising! It's not right, you couldn't get away with it in any other job so why does the NHS protect these people. I don't know how they sleep at night.
Well there we are rant over :-)