My Cancer 'till now

The objective of my blog is to let you know of my experience, so that you might be aware and therefore be forearmed should you ever have the bad luck to be struck down with cancer of the mouth. Ten years ago ,I didn`t know it was possible to get cancer in the tongue,and even though it is on the increase , it is ,like Cinderella, hidden away.
So, I shall begin by putting things into context-my background and the chronology of the disease up to today, then I shall only write brief blogs on what is going on every day.
This should take us up to the Paris marathon where my children are running to raise funds to go towards research that might help eradicate this cancer.

1953-Born and raised in Leeds,Yorkshire, one sister,two brothers,working class background.First in family to gain place at grammar school and go to University where studied german (Liverpool). After completing a P.G.C.E at Goldsmith`s College ,London,I taught in a comprehensive in Reading,loving my job , and involvement with young people and organising exchanges, drama ,sport ,as well as developing exams for the less able and aiding oxbridge candidates.
1983- had daughter,jerina ,and continued to work part-time.
1988- Move to france due to husband`s job,and had son, jack.
Missed teaching and despite european rules was not qualified to teach in french state schools ,so did as many ex-pats do and turned to E.F.L. teaching.
Found a great job as an in-house Business English teacher in a buildings company,where i integrated into French society for the first time and made many friends.Very happy.
Unfortunately,after seven years was made redundant,as asbestos was banned and many colleagues lost their jobs.
2001-redundancy september
2001-cancer symptoms,december
Chronology
Before symptoms of cancer,suffered from extreme unusual fatigue,but ignored due to heavy work –load and involvement with school committees etc,also occasional panic attacks which were frightening but could be coped with. I was 47 and started to have menopausal symptoms.So health problems at this stage were not really investigated and i believe now they were warning signs of body getting out of control..
December 2001-concerned about a small lump on my neck,i visit my doctor who reassures me it is nothing,probably the onset of a cold,and to go home and enjoy xmas.As the lump does not hurt, I take his advice and go to see my family in Leeds for xmas.
On my return,the lump is still there,not significantly bigger,nor does it hurt ,but something niggles me about it. It is two months before i get to see an E.N.T. (Ear, Nose and Throat ) specialist who reassures me it is probably nothing but worth a needle biopsy. The result comes through after a week as “suspicious”. Another week ,before i am booked into hospital for the lump to be investigated and removed.
WARNING-even though you are prompt yourself ,it cantake up to three months before action is taken to deal with you,and remember,the cancer has been growing before it makes its appearance visible! Ask as many questions as possible before your operation as cancer was not mentioned to me and i had no idea that they would take away not only the lump,but lymph glands too to investigate.I just naively asked about scarring,as it was near my face. And thought then it would all be over...
Another week passes before I am reluctantly told i have secondary cacncer of the “squamous” cell variety.What the hell is that? But the good news is that i am young and the cure rate is high at this stage.So positive and upbeat that you readily accept the bad news ,forget any questions you had pepared and put yourself in their capable hands ,convinced it will all be over soon. The ent spec. recommends only radiotherapy-that should do the trick and kill off any remaining rogue cells.I thank him profusely.
Radiotherapy –six weeks,every day for a few minutes,but somehow seems to take up all day. Depressing places in basements of hospitals,where patients pretend to read old magazines or stare at a t.v screen,waiting their turn.
For head and neck cancer,you are fitted with a wax mask, tailored to your head exactly.Marks are then drawn on it to show where the radiologist is to blast it with the rays. Your head is clamped to a cold trolley while the machine whirrs and turns. It does not hurt,just frightening.
WARNING unless asked ,you are not told of consequences of radiotherapy. It affects your teeth and your saliva glands dry up.It does not leave your system.
What is more,Radiotherapy cannot be done in the same place twice,as can lead to necrosis (death of bone) and it causes complications for further surgery . It is vital it is done with precision with correct dosage and in the corect place.
Some people do not react to radiotherapy.
Mine was ineffective and as they concentrated more on the tonsil area and not the tongue,the target was not met,and i was left with a sore throat,difficulty in speaking and eating and having to carry water with me everywhere to replace the saliva.
July 2002-holiday to Antigua to recuperate.
December2002- Lump on tongue appears. Unlike an ordinary sore, am anxious to see the specialist.difficulty getting appointment before xmas.maintains it is nothing and that i am cured of my cancer and to go home,enjoy xmas and stop worrying.
Take doc`s advice ,but lump still ther ,small and doesn1t hurt,but something tells me it is not right.
Finally see the specialist again who yet again poo-poos the thought it could be cancer,,but i insist on a biopsy.
We decide to search for “best” E.N.T.” surgeon in Paris as arrogance of present one has lost my confidence.We are recommended The American Hospital of Paris ,avery expensive hotel like hospital wher you would expect everyone to speak English,but they don`t.
Another round of biopsy,operation to cut out lump.wait for lab result,waait for consulation ,told you have cancer of base of tongue ,BUT,good news you are young.you can live to you are 80!!Where have i heard this before.!
Now life is one hospital appointment after another-scans and M.R.I. and waiting and waiting for results which invarioubly come back “suspicious” as all scans can only do so much and give the doctors indications and pointers only.
The cancer keeps returning in the tongue and i have more and more of my tongue taken away.Operation ,followed by recuperation,followed by more scans. A partial glossectomy,with tracheotomy finally leaves me with a slight speech impediment and difficulty eating. Pshsychologically,i am at a low ,feeling worthless,and dark thoughts that i am not going to recover from this disease.
So little strength and hope.
I research other hospitals and treatments but all that is left to me is a total glossectomy which is where they cut out all of your tongue,take a piece of muscle from the back or arm to fill the hole left by the operation and then after recuperation,months and months of re-education to try and re-teach you to swallow and eat and talk. Horryfying,with no guarantees.I just could not contemplate that . As a language teacher,this was all too overwhelming.
WARNING the French are good at technical support ,but have no or little emotional team set-ups-you need your family and friends more than ever.
CHEMOTHERAPY Is notorious for not working on oral cancer,but I was desperate to try anything and so i subjected myself to several lines of chemo which is to try and kill off the cancer cells by poisoning them along with good cells –which hopefully ,in time will return.
I lost my hair several times ,had terrible ,scratchy facial acne,regular blood tests,a,catheter fitted because my veins are fragile and chemo can destroy them.About three years in all with no effect.
2010 I have been told there is nothing more can be done to treat my cancer ,but that the inflammation of my tongue can be controlled temporarily by cortisone,long term i could die of the side effects rather than the cancer.
I communicate by using a whiteboard and carry pen and paper with me everwhere along with kitchen paper and a cup because i dribble profusely.
Physically,my legs are spindly and i have difficulty getting off the toilet or taking the handbrake off my car. Yet ,i am not classed as disabled.,and do not deserve a parking badge.
My face is swollen and i can`t wear earrings or lipstick-it just gets wiped off immediately.
I long to eat a piece of toast ,but it has been more than two years since i have had food normally.I am fed through a tube to the stomach, but it does not give me enough sustenance,as i end up being nauseous,and it leavesme house-bound for hours..
Still, it is now eight years and i am still alive,although the doctors expected me to die two years ago. I appreciate the wonder of life and the miracle of new-born babies.I look at people and think if only they could appreciate what they have-and the joy of the voice and song and just being able to talk nonsense.
And that is why i wrote this blog,so you can be aware and listen to your body and that with funds and information, cinderalla will comeout and go to the ball and the gass slipper will be found to cure oral cancer.
If you would like to donate and encourage my children in the paris marathon to raise funds,please contact http://www.justgiving.com/jerina-hardy ,
Or http://marathon-de-paris.aiderdonner.com/carolinehardy