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