One month...

If I'm gone when you wake up
Please don't cry And if I'm gone when you wake up
Please don't sigh
Don't look back at this time as a time
Of heartbreak and distress
Remember me, remember me
'Cause I'll be with you in your dreams
I'll be with you

But If I'm gone when you wake up
Please don't cry
And if I'm gone when you wake up
Please don't sigh
Don't look back at this time
As a time of heartbreak and distress
Remember me, remember me
'Cause I'll be with you in your dreams

Don't cry, I'm with you
Don't sigh, I'm by your side
Don't cry, I'm with you
Don't sigh, I'm by your side

And though my flesh is gone
I'll still be with you at all times
And although my body's gone, oh
I'll be there to comfort you at all times

I don't want you to cry and weep
I want you to go on living your life
I'm not sleeping an endless sleep
'Cause in your heart
You have all of our good times
Oh, all of our good times

And if I'm gone when you wake up
Please don't sigh
Don't look back at this time
As a time of heartbreak and distress
Remember me, remember me
'Cause I'll be with you in your dreams

Mum's effort

Mum put so much effort into this blog and raising funds for mouth cancer. The idea that she could help even just one person with her efforts was worth it. Two days before she died, she woke for a short while and asked me to update her blog so everyone knew she had not forgotten about them. Mum always cared about helping others.

She raised over £7,000 through her blog, and thanks to your donations along the way. Thank you so much.

The Mouth Cancer Foundation have posted a thank you to her efforts on their website. They will also be remembering mum at their Mouth Cancer 10k Walk on 18th September 2010 in Kensington Gardens, London. Dad, Jack and I will be there - if any of you would like to join us, please do. Details below.

http://www.rdoc.org.uk/exp26.html

All the best, and thank you all for caring about my mum.

Jerina x

A few words from Mum's diary

Mum wrote a few things in her diary that I would like to share with you. The connections that she made through this blog meant so much to her, and I think it gave her strength to know you were out there reading her words. Love Jerina

" One very good thing about the blog is that I am now in contact with people I haven't heard from for years. Whether conscious or not, it is a better way to say goodbye to people than when you are already in the coffin."

"Smile, laugh, enjoy life - carry me with you in your heart + I can go along the journey with you."

We will be saying goodbye to mum this Friday at 2pm at the Holy Trinity Church in Maisons Laffitte. All are welcome.

Gone to sleep

Mum passed away peaceflly in her sleep this morning at 5.50am. After a long time fighting, her pain is now gone. She kept fighting for us for as long as she could.
We will miss you forever mum, you truly were the sunshine in our lives. We will do you proud, I promise. I love you.

Jerina

Sorry - very ill

Jerina here, Caroline's daughter. Mum has asked me to let you know that she is too unwell to write her blog at the moment. Following starting up the chemo last week, it has hit hard and she has been in bed asleep and too ill to turn on the computer. She hasn't forgotten about her blog though, and hopes to be back up and writing to you all very soon! Dad working overtime to look after mum, Jack and I home until further notice. Thanks for all your support

good,tick,good,tick,good,tick

wow! Got my card and am now officially an invalid and can jump queues.something the French do so naturally anyway!
secondly,my eyesight is o.k.-no cataracts.
Thirdly,I received a lovely cushion from a friend which snuggles into my bony bottom and offers much relief!!
My swollen face is also looking a little less puffy,,,,and my daughter is coming to visit this weekend.
Wishing you all as good a weekend as i hope i will have.

being well to be ill

In France,you need to be well to be ill.You need to make your own appointments for everything and then get yourself there,whether it is a blood test,an x-ray,whatever.Or you can stay in hospital.there is no happy medium,unless you are prepared to pay someone to do these things for you.I have friends willing to help,so i am fortunate ,but I am reluctant to ask as A) I am stubborn and B) it requires a mail to make the request ,then hope that that person opens their mail that day and can reply back and hopefully say they are free to do it.I suppose i could text,but not everyone answers that either. So I tend to impose on my husband which is unfair of me and i shall have to try a little harder.Today then ,i have asked a friend to take me to the town hall as it looks like they may have my priority card which i have been waiting for (but no parking badge which are like gold dust),and then onto the optician`s.
I am waiting for her reply right now......

not just me

my poor husband!
Every day he has something to do for me that eats into his work time.Monday,hospital,Tuesday chasing the badges so i can have priority at the supermarket queue,today making an appointment for the optician`s as my eyesight seems to be worsening ,not to mention the every day drug fetching and administering.last night we settled down to watch a thriller and ,of course,just at the pinnacle of the plot, my chin spontaneously began to bleed profusely,all over the settee,my clothes,the carpet.So that was the end of his rest....
When i tried to communicate this to the nurse,she offered hospitalisation.....as if...

3may-chemo one 2010

slept through the transfusion very deeply and then came home and had another two hours.I have a bad taste in my mouth and feel a little sick,but nothing intolerable yet.Don`t think it will be easy whilst still on the cortisone and the chemo at the same time.My eyes are blurry too-i hope that is temporary!
Next chemo in two weeks when i expect i will lose my hair too.

decision made

I awoke with a face like a blowfish,my eyes popping out and my lips as if they had been turned inside out.I had spent a night with a headache and pain in my neck and side of my face,so I have decided I can`t go on with this rollercoaster of a life ,so I am going to have a go at the chemo.
I am quaking in my shoes about this so will appreciate your continued support.

change of wardrobe

It has been really quite hot here the past few days ,although it seems to have turned today.
ithought i might look out some shorts-get some air to the legs.But i don`t have legs any more ,i have sticks with purple bruises.I feel i am losing weight despite trying to get more sustenance into my body as my cocsix is jutting out and i can`t get comfortable sitting down .The scales say I am down a kilo,but it feels like more.
And they want me to do more chemo.....?????

internet: a mixed blessing?

Lying here reading your comments on the blog and thinking how wonderful it is that you are able to send me such supportive notes from all over the world (especially from people I don`t know),and then realising it is a double-edged sword as my close family (i have two brothers and one sister) use it as a tool to communicate briefly and occasionally,so they do not have to visit.
Should i be grateful for any communication from them or is it right to be cynical?

sorry

apologies for no blog today,but had a bad night,feeling really down at heart,and not up to it.
By the way, i do read all your comments,even if i don`t always reply and am eternally grateful for them-sometimes they are the only things that keep me going.

language of interpetation

I have woken up this morning looking like I have done 10 rounds with Mike Tyson!My face is swollen and my lower lips so enormous,it looks like I have overdone it on the botox.
Last week my husband and I rushed over to london to seek a second opinion on the next step for me to take re my treatment.We had no problem taking the Eurotunnel ,so Don`t understand all the problems of people unable to get back to blighty because of the volcanic ash problem.
Anyway,Dr.Spittle was very welcoming and tried her best to understand the complexities of my ten -year case in a short time and concluded that i was an exceptonal woman who has been through a lot of suffering and continues to do so,but empathised that longevity of life (me being relatively young at 56) was as an important issue as quality of life to me.However,my disease is incurable,and i should be looking at my options.
She talked about returning to the u.k. to be near my family and getting the excellent Macmillan care that is available here.I interpreted this as she thought I did not have long to live now,without saying it outright. My husband did not see it this way at all,rather than that we had been comparing health-care in France and it failing in the after-care area,that is all. So, even when the language is the same ,one hears different things.I suppose state of emotion plays such an important role in understanding,and by then I was tired ,tearful and struggling to communicate.
Anyway,the upshot of the expensive Harley street doctor was that she was in agreement with the French that i should come off the cortisone ,although slowly as t o avoid any dramatic side-effects,and if i should feel strong enough to try the chemotherapy.She gave the impression that my cancer in the tongue was more concerning than the tumours in the lungs,as it was restricting the whole of my head and neck,causing pain,tension ,suffering and of course debilitating my ability to speak at all,whereas the lungs were showing no symptoms yet.She also thought the lump on my chin was a tumour,but my french ENT doctor insisted it wasn`t.So I think I will have to have a biopsy to settle that one.She maintained it is possible for me to have further radiation,whereas the French doctors insisted I could have no more.
SO,who to believe,what to do,have i benefitted from this meeting or does it just add to the circles i am going round?.
One thing is for sure,I shall cut down on the cortisone asap and set myself the goal of getting to see my son graduate in July but right now it seems one helluva hill to climb yet again
Hey,i am not all doom and gloom-I loved my little ride round London taking in the sights whilst looking for Harley street and i stayed overnight with the greatest of university friends-more of whom i will tell you another time.

another little moan

last week ,after enjoying a nice warm shower, I was shocked to find my towels covered in blood-i had not knocked myself and it was a mystery why it had happened.Anyway,that spoilt that treat as i had to put the washing machine on and even wash the bath mat.
Then yesterday ,i was preparing a nice salad for my son and husband ,when i noticed blood dropping on the floor.I had not felt a thing,but i must have scraped my arm against something as my forearm was bleeding.It is hard enough to cook as i have to do a lot of it with one hand as i am having to wipe away the dribble from my mouth with the other (don`t think it would add flavour-have not seen it in any recipes)My skin is so paper -thin,i think i might have to cover myself in cling-film.Those are the latest physical nuisances,and the mental one is that my voice has been erased from the answerphone machine-the voice i used to have and still enjoyed hearing it whenever i listened to my messages.Now that is gone.My husband and son did not understand why it should upset me so much.
Drip,drip-the smile is drooping.

strength

firstly,i am sorry for not getting up the video-i will try and u-tube it at some point,as i am at a loss as to what to do.
I am trying to get some colour into my garden,and it is proving quite difficult.In order to put some beauty there,one needs soil,of course and this is so hard for me to transport.I have to do it trowel by trowel and it is such hard work,when it should be a pleasure.
My son came out to help in the end and it was done in a flash.
which made me think about the marvel of strength and how wonderful an asset it is ,especially for men.What we have achieved in the world because of men`s strength,is incredible.I have always celebrated things cerebral and poo-pooed muscles and wrestling and boxing.But now i realise strength is a force to be admired,although not violence.
Another lesson learned -you don`t know what you got till it is gone-as the song goes....

It took me hours(with the help of my son) to upload the video of the marathon ,which does not seem to have worked anyway,so please let me know if you manage to view it as it does say it has worked.I have had enough of it now and it is becoming a chore,so i will keep to my blogging,and try and enjoy the sunshine a little more.

Don`t know how this will turn out,but a big thankyou to all who participated in their many different ways,whether their contribition was verbal ,physical,monetary-you all played your role and we managed to raise more than 6,000 euros for the Gustave Roussy hopital de Paris and the Mouth cancer foundation. If it helps to alleviate any of the suffering that i have and do experience,it will have all been worthwhile. A good weekend to you all

victory-paris marathon 2010 11 april

twas a chilly,sunny,chatty and excited household that woke up to the nervous challenge of the upcoming marathon.Armed with tiaras and skirts and bags and maps ,some in quiet contemplation,others munching away at their coco pops,they suddenly piled into the car and were off,not to be seen ,except fleetingly for the next five hours-at first waving arms ,happy and jolly,-and gradually the feet that bit slower,the smile replaced by a grimace and gritted determination by jerina,and a supportive brother-hero skip by her brother.
Friends played their role magnificently (university,boyfriends,schoolfriends,my friends)trying to follow the route,catch up ,wave the flag,shout and scream ,move on to the next point.One friend,Lindsay,was there for the whole world,encouraging canadians,French,spanish,Brits you name it and she would call out their name and they would wave back (although some found doing that made them a bit wobbly!!)
Anxiety did set in a couple of times when it seemed everybody had passed us by except our two heroes.Really quite elderly people had passed,a man on stilts,four men pushing a barrel of bordeaux wine,a woman who looked like she was swimming,a man who seemed covered in bandages and wasn` going to take another step,yet no sign of our two.Then just when we were giving each other looks that dare not say what we were dreading-they would appear,and a roar of relief would render the Paris air.It took five and a half hours-but no matter,what a feat.Jerina was in tears and Jack screaming for a beer as he had been "dry" for two weeks,and had promised himself that reward.We all gathered together for some photos,(which i will post as and when )and then said our goodbyes and with some relief,wended our way home.
If anything from this marathon ,i have learned a great lesson.I have been enormously impressed by the young people who have shown a sense of responsibility ,of teamwork ,of camaraderie and respect,whether it was by simply donating or physical presence and encouragement.Thank you.
I have learned humility that some people can be caring and give help even though their own lives seem so much more blessed than my own,but mostly I am exceptionally blessed that I have two children ,who ,despite their bickering and sibling rivalry,will always be there for each other.They have shown me this physically by doing this marathon together for their mum -as if to say,"don`t worry mum,no matter what happens to you-we will be o.k.Promise.And what more could a mum want to know?
Thank you to you all who have in any way participated in this event with me.I shall carry on blogging as long as i am physically able so do take a look now and again.

Ready, Steady...

I don't believe it!

Four friends arriving this afternoon .Daughter and boyfriend arriving this evening and what happens?
the hob packs up! I have prepared all this food and my four year old induction,very expensive hob decides not to work.
What are the chances of getting that repaired on a Friday?!!!
Still a bit nippy for a bbq!!
caroline

rock bottom

Getting ready for visitors to come and stay-young people ,you know students where once you might have dreamed that your son`s friends might have said"eh ,your mum `s not half bad"-and instead dreading them being ashamed of the way i look ,and how they don`t know how to react to my poor communication ,and right now wanting to hide away.
maybe ,it is just because i had such a bad health time last night,coughing up blood and not getting the phlegm up and feeling of choking as i couldn`t breathe through my nose or my mouth and it never bloody ending.....none of it is me..

life is a marathon

Why does everything have to be so complicated and drawn out with the french beaurocracy,that to achieve anything is like getting to the finish line of a race.Exhausting.
Trying to check on my disabled badge in the vain hope I might have one to make things easier for me to get to see the marathon,My husband learns that they have lost my dossier because they are reorganising and i must start all over again with the form filling.
next,check up on the insurance which you need for special events,only to find out that they too have no record of us applying for it,although the post office has confirmed the letter was delivered to them.
The medical certificates must be worded correctly and will not be accepted if just put "marathon de Paris" and so it goes on...enrollment numbers must be collected by a certain time at a certain place,and not on the day..
Thank God,I had lindsay come in the afternoon to give me some welcome reiki to calm me down-she has the art of sending me to sleep quite quickly nowadays.

Easter Sunday 2010

One week to go to the Paris Marathon,and John and I decided to drive the route to pick out some points and get some idea of what our children will be seeing.
The weather was changeable,with sudden downpours ,followed by glorious spring sunshine.Paris was looking majestic ,as if it was having a spring-clean ,with flowers springing up,and church bells ringing ,and tourists milling out onto the roads.Signs for the marathon were going up,and lines marking the kilometres painted accross the roads.I am beginning to get nervous ,as if it is me doing this!
For the most part,it seems to take in the glorious parts of Paris,and if the blossom is out and the sun ,it should be a wonderful sight.
My problem is that I don`t want to miss out,but i don`t know where i am going to be able to stand ,or preferably sit,to see any of it.I do wish i had been given a disabled badge.I am not even sure how i am going to be able to get into Paris,as they recommend public transport,but last time i went, it made me feel awfully sick.
Still,we will do it by hook or by crook.
By the way,we only got half-way round by car as it was full of one-way streets-and that was in two hours!!
If you can come and support,do let me know,and it is not too late to pledge a donation if you have not already, as we are so close to our targets,the addresses of which you will find on the right of my blog.
I will spend today planting some bulbs-which is a bitter/sweet activity for me,nowadays.
Bless you all that read my blog ,and may today be renaissance of all things good.

second visit of reseau emile

I am grateful to this group of nurses and doctors who are ready to come and talk over with you your options and put it in layman`s terms,offerng a little clarity,which consultants too often are lacking.
For example,the chemotherapy I had last year,for which the conclusion was it had been a waste of three months,and had made me very ill ,perhaps even worsening my health,they now say ,may ,in fact,have worked,as my C.T. scan on my lungs was much better than expected.This did not make sense to me.How can a scan immediately after treatment,look bad ,then nine months later ,without chemo,look better?
The Reseau doctor Larouture explained that it can work like weedkiller,sometimes straight away,sometimes never,and sometimes much later on.So, I understood! simple.
he also explained that if i were to take the chemo option I had to keep two things in mind,that being i must be physically fit and mentally strong.It is always good to have an objective ahead to look forward to and help in the battle.
i know this is common sense ,but you get so confused,when cnsultants are talking to you about different chemicals and the amounts you have had and when ,and all you can think of is "can i put myself through this yet again?"Feeling sick,vomiting,losing my hair for the fourth time,looking yellow and having no interest in life as you are consumed by the self-imposed illness.AND ,AND,at the end of three months ,if you survive,there is no guarantee that it will have worked at all,for a few weeks of extra life ,or a few months, or more.
What an impossible decision!
I am hiding from it at the moment,and hope I will have the strength to face it soon,as it must be.
I shall enjoy the day with my son preparing the house to be invaded by young people coming to Paris to support jerina and jack for the marathon next week.

effects of cortisone (on me)

As we are discussing the possibility of chemotherapy yet again ,as opposed to continuing with the sumedrol (cortisone),I thought I would show you some physical effects it has had on my face over nine months.

when distance matters

My darling daughter whilst out training for the marathon on my behalf, got mugged and her mobile taken and hit in the face.(she lives in London)
It was more of a shock than anything else and a need to be with her mum for solace.
I too,could have done with a special daughter cuddle as i have not been having a great week health-wise.If only we lived nearer..
Then,lo and behold ,I went to check my post and a kind friend cheered me up sending me this hand-made card and a pair of knickers-Pam easter will never be the same!

no spring in my step,I am afraid.

the oncologist explained that my head pains were as a result of the inflammation in my head.They had reduced my cortisone dose because of the side-effects,and in so doing ,this increased the inflammation in my head ,causing pressure on my nerves.I may have cancer of the tongue,but it effects my head ,throat ,mouth ,chest,as it is all connected.
They suggest putting me back on the chemo which they said did not work last year ,but are now saying it did.All i remember is it making me ill and very miserable. I amgetting physically and mentally exhausted from all this now. It is so confusing.

a lost weekend

I have just spent 48 hours in excrutiating pain in bed with a headache that was so bad i dare not move my head,as every slight movement was like a knife .I am used to migraines ,but this was off the scale and i just could not have enough painkillers to dull the pain.
Today, I am much better ,but feel weak after the onslaught and bewildered at what brought it on.

knicker pursuit ;part 2

As my friend sent me an assortment of knickers in all shapes and colours,some as tiny as a doll`s,I thought i would have a laugh and do the catwalk stroll in front of my mirrored wardrobes,and see if any held up and also hid the sags -fondly imagining that i could be transformed to J-Lo,well perhaps that is exaggerating things ,somewhat.
So far ,the jury is in favour of a torquoise ensemble.
As this is a real treat like opening an easter egg every day , i am saving the rest for one a day to savour and will keep you posted.

hospital visit

returned exhausted,from the self-induced stress,with the results that the tumours on my lungs (three of them) have one,grown ,one remains stable ,and one diminished.
The doctor is somewhat flummoxed !
I am too tired to even try and understand the implications of this.
We are having a storm outside ,so I am going to snuggle down in my bed.

layman`s explanation of scans

there are so many different types of scans nowadays,I wonder if people know what they do?.
everyone knows about the x-ray which is a simple one-dimensional picture,which does not give much detail .
There is then the C.T. scan -computerised topograpghy,which is like an x-ray but gives pictues from various directions,therefore more detailed.you lie down ,and the machine passes over yourhead as you lie still,taking pictures.It does not hurt and takes only a few minutes.It is quiet.
The M.R I. scan Magnetic Resonance Imaging -is adifferent beast as it is a big enclosed machine which takes very detailed pictures of the body from all angles and tissues.It can be very claustrophobic(which i find) and makes a noisy thumping sound ,like someone is drilling the street.You wear headphones to protect which dull the sound a little,and you must lie still all the time.This is usually a longer procedure.You may also be asked to be injected with a contrasting dye which further enhances the pictures.
Then there is the lesser known pet scan-which is a half -day procedure.You are given an injection of a sugar solution and then asked to go to bed for an hour and lie still whilst the solution works its way throughtthe body.
you are then asked to go to a machine which is very similar to the mri machine and it slowly passes over the whole of your body,picking up heat spots which then are translated into pictures. It is supposed to indicate the possibilities of tumours in the whole of the body.
For all theses scans ,an expert interprets them and wites a report which is passed on to you and your specialist for discussion and examination.
The one thing they all have in common is that they act only as aids to the consultants.They are not definitive and conclusive,but helpful for diagnosis.
This is what i have understood,and i hope i am not belittling you by giving you information you are already aware of .And i am sorry if it seems somewhat basic,too.
But i hope it might be of use if you are asked to have one done.

despite the sunshine and the promise of new life, I can`t stop crying today.

perfection

when you are seriously ill, You can become seriously sentimental very easily and today i woke up humming "It`s such a perfect day....I`d like to spend it with you.."you know the song. This led me to thinking what is/was my perfect moment in my life,and I remember the day I brought my son home from hospital a few days after his birth,and we lay together in bed and his whole head fitted perfectly like a jigsaw in my neck and a surge of peace overwhelmed me.I shall never forget that as it felt like perfection.
I never mentioned this to my son ,but years later ,when he was much taller ,he gave me a cuddle and said out of the blue-"Look mum, my head still fits in your neck just right!" Isn`t that strange?
What has been your perfect moment or is it still to be looked forward to?.
Apoogies if this is a little sickly sweet.
p.s.the moment was with my son ,but my daughter is perfect and not to be left out!.

a little anxious

not much to report today,feeling aliitle low-don`t know if it is the change inthe medicine or the anxiety of the C.T.scan next week which is praying on my mind.I have aproblem lying down flat as my saliva runs down my throat and i have to lie still,and sometimes it feels like i am drowning ,and i daren`t press the emergency button as i want it over and done with.
I am concerned about the possible results ,as although the cancer has gone to my lungs,it is still classed as oral cancer cells,so that cannot be treated in the lungs ,either.
I shall have to put mind over matter and not pre-empt matters as i have a tendency to do and for which i am always berating my children,as i know it is a useless exercise.Is it a female thing? and is that why men invented hobbies?
bon weekend to you all-it is sunny again in Paris.

talk about the great Easter Hunt!

Little did I realise that when I mentioned my problem of finding a pair of knickers that would stay up around my scrawny thighs that i set off the great knicker hunt.!

My sister sent me a pretty pair, but way too big-shame I would have enjoyed feeling quite feminine.She was quite shocked that a british size 10 swamped me.
Then some friends set off to the Isle of Wight ,sure that they would get some in some quaint old shop that still existed in the Isle of wight.NO avail ,neither the quaint shops or granny`s big knickers were to be seen anywhere.
They did not return empty handed ,though,as Marks and spencers did have a limited selection of size 8,which ,though not ideal ,(and the sun still shines in places where it should be snug), are the best so far.
Finally,my old university friend has offered to get some designed for me!
As i thought this was her sense of humour,and she did send me a mail in the middle of the night as thatis when she works writing,I thought it was quite funny.
But she is deadly serious -so i will send her my thigh and waist measurements and see what she comes up with. You see, you never know what an off the cuff remark will bring-much more intersting than eggs,what!

post visit to the doctor

the doctor did try to understand me yesterday,and i suppose it can`t be easy for him to see me suffer and not be able to fix it.
I have another infection ,which means another injection ,which will make two in the bottom every day.I won`t only whistle when the wind blows -i will probably take off!
He suggests lowering my dosage of cortisone for a while,but i hope that does not reduce my energy level as iam enjoying having a little energy and even managed a little gardening in the afternoon ,although i have to be careful as ,if i lean over to weed ,i vomit-mind you that could kill off some of the weeds!
I am pleased to hear that the rain has stopped in New York finally and my daughter managed to do some marathon training in Central Park-sounds like she is enjoying life at last!
Let`s hope the sun comes out again and shines on you .

not looking forward to this week

Coming up-hospital visit-i actually feel like i want to wretch even approaching the place ,even though it is in a very pleasant part of Paris.It is a funny hospital as no-one looks ill,it is like some kind of kafka-esque experience going there.i shall have a quick routine examination,where the doctor who is responsible for taking out most of my tongue,will make little effort to try and understand me and direct all his questions to my husband.I will then be given a long prescription for my medicine.If i am lucky ,he might ask how my morale is -how do you answer that
one!
So sorry ,i am sounding bitter,and perhaps it`s because my sister is sunning herself in barbados ,and my daughter is in New York (i am so pleased for her though as she has really deserved this break),and a little sunshine coming my way would be very welcome.
Still,the nurse has just called in and said it will be 14degres this afternoon,so maybe ,i will get a chance to put my face in the sun.

it is a funny world

I was feeling down a few days ago ,having just found a rather big blossoming of burst blood capilliaries on the whole of my right shoulder,and thinking of the dribbling ,and that i can`t blow my nose without holding tight onto my mouth;,that i struggle like an old lady to climb the stairs ,that my knickers keep falling down as i am so skinny ,especially around the thighs;that i just have to look at my legs and a bruise appears.Worst of all ,that i do not look like me -more like a coconut ,really!
And so we went off to england for a few days,to visit an elderly aunt who has just gone into an old people`s home.We stayed in a cottage just the other side of the channel,so not too far to drive,and the fog lifted and i felt so relaxed!
I had a walk down to the village store,and although i could not converse with the locals ,it was lovely to listen to them chatting away ,about local things withsuch easeIt was very cold ,but the skies were blue and the kent countryside is lovely with many pretty villages.
Both John and I managed to relax-get away from the nurses and live in a different world for a short time and ,you know,my condition hasn`t changed but for those few days my world did and it did me the world of good.let us hope it lasts.
a good weekend to you all and hope you get time for yourselves.

blog in french

Isn`t it wonderful,thanks to Susan ,that you can now read my blog in french,too.Awider audience can only be positive.
Maybe some of you could donate to the french site http://marathon-de-paris.aiderdonner.com/carolinehardy
I am very proud of those who already have been so generous.My children are beginning to feel the pressure of the marathon.The mental fight is kicking in .Any tips?

short break

I will not be blogging for a few days as I am going to visit an elderly Aunt in England who is 99 and has just gone into a home and we want to see her whilst we have the opportunity.
Will be in touch on my return ,so have agood week,and make someone smile ,specially yourselves.

expecting the unexpected

The air is still bitterly cold,but there is a sense of spring around, and with it comes that internal urge women tend to get about clearing out and refreshing their homes a little. I am no different,although I have a sense of urgency as i do not want to leave a lot of clutter for my family to not know what to do with.
So with good intentions and summoning up some energy, I start to sort out various toys that i could give away and books no longer required.
I decided to wash the cuddly toys -big mistake as the stuffing came out of one of them and bunged up the machine and i spent the rest of the day unbunging the pump over and over again.The garage was flooded and a day had gone ,with me cursing my stupidity.
In the end,I had to go and buy a new machine,which in fact,was quite an amusing episode(i have to laugh at these incidents as otherwise life would be unbearble)I have a good friend who came with me to act as my voice,who speaks reasonable french but is not bilingual,plus me who is more or less mute,trying to extract information about the machines from a saleslady who was well into her pregnancy.It must have looked quite funny ,me with my sign language and paper and pen to the ready, spitting into my cup every five seconds,my friend confused whether she was speaking in french or english and the preganant assistant wanting to sit down and rub her tummy.I think she made a sale she won`t forget in a hurry.
As a result,i came home exhausted aNd feeling incompetent and tearful,when the postman knocked on my door and left me a parcel from an old university friend whom i had not seen for years ,but had retained that special friendship one makes in those early years of youth ,and inside she had sent lots of little thoughtful gifts -each with a little note attached and a letter. And it changed my outlook on that grim day,not the presents ,but yet again ,someone was out there rooting for me ,giving me strength again .
have a nice weekend
,
hurry.

the givers and takers

yesterday evening ,I was feeling down as i had been to the doctor`s again and have now got bronchitus and have to go back on more antibiotics,when I had only just finished taking some for another condition.And the constant coughing trying to clear my lungs is wearing.
Then i receved amail from a lady who has been reading my blog and who has met me briefly ,but to my shame ,i could not recall,and who was offering to translate all my blogs into french.I was so touched ,as although i have had offers,this was from a comparitive stranger,and it made me think of all the people who are so giving without reason and how lucky i am to have come across them.
I have a friend who gives me reiki sessions
i have a friend who gives me massage
i have a friend who gives me pilates exercises
ones who accompany me on walks
ones who visit me even after a long day at work
ones who send me dvds
ones who are raising funds for my charities
and all of you who read my blog and give me encouragement.
And it makes me wonder-who gets more out of life -those who give seflessly,or those who just think of the next take?
It also makes me question what I was before i became ill.
feeling a bit better today as couging has abated a little already.The sun is out again.

luck

I was thinking about how people say you make your own luck in life and ,success is down to hard work and a bit of luck,and i think it is only people who deem themselves to have" made "it who can make such statements.
I am sure it is just a matter of the roll of the dice.Life is unfair ,some people sail through life,others carry burdens with them from birth.
How do you equate bringing up your children to being honest ,good ,hard-working ,responsible citizens and that you will get what you deserve if you do follow those rules,when it is so often not the case and those who merit a good life,are often plagued with bad luck ,be it health,poverty ,tragedy after tragedy,which no amount of hard work will get you out of.?
When I first got cancer,I remember my son blaming it on his school-and then the house we moved to at the same time -saying they brought bad luck. I suppose he needed to label it ,and this was his way of coping.Move schools and home and the cancer and bad luck would disappear.!If Only!
My brothers and sister have been financially lucky and they put this down to their hard work and they deserve their new -found freedom of not having to worry about paying bills,but they worked no harder in life than i did ,they were just clever enough to be in the right place at the right time.Out of the four of us , I was also the unlucky one to have been struck down with cancer.
So what lessons do you give your children?
I suppose it is not to expect anything ,but to appreciate the good things you do have,to respect yourselves,to have good manners,to look at the world and see it for what it is ,warts and all ,and know that you can only do what will make you feel a better person.It is good to be passionate about something
,but don`t think life owes you anything.
I am sorry if this is a bit of an incoherent ramble,but stream of conscience and all that and i don `t have a psychiatrist.....
I had news from a friend yesterday who has just become a grandparent for the first time and is cock-a-hoop,and i am so pleased for her .I think there is nothing that can beat a new life,especially a cherished one.
The sun is out again and i really should go and spend a bit of time in it -hope your day is good.

opting for the quiet life or having a go

I was really looking forward to saturday evening as my husband and i had been invited to a party of "selected" friends (i:e people who knew of my condition so i did not get stressed about how people would react).Not too many folk just enough to get along and enjoy some music and ,if i was up to it ,have a dance with the old man and girlfriends.
So ,i made sure I rested up all day to conserve my energy.
But my body was n`t up to it-I just could not control the saliva that filled my mouth ,and i kept coughing until i started to bleed .just a little and it soon stopped.
I did get in a bop to a few oldie Goldie songs and it was nice to try and chat with my whiteboard,to a few friends I had not seen for a while,and i am glad i went,even if i was the first to leave.
But the next day,I felt bad,and i do not know if some of it is pshychological,as i sit back and look on with envy at people singing their hearts out at the beatles songs,and laughing ,or I am surprised at how litle i can do physically any more.
Maybe a bit of both-anyway it depressed me on Sunday ,but by the afternoonI was up cooking good old roast beef and yorkshire pudding (which did not turn out too well for a yorkshire girl) for her beloved son who was about to wend his way back to the u.k.and needed feeding by his mum (well,I wanted to do it ,ifthe truth be told)
The sun is shining here in Paris ,so i might just go for a stroll.
best,
caroline

day of rest

I am afraid I don`t feel too well today.

communication is all

you do not know how a few lines of communication can lift one`s spirit.It has helped my moods and motivation a lot lately ,so I wanted to say thankyou to you all.
My sister sent me a surprise package of photos,and my brother a card,along with a few chatty words,which is unusual for him and it made my day. I hope it is not a one-off.
Have a good weekend.

weilding my blog as a weapon of attack

Getting things off my chest.
I wish i could get rid of this constant rattle that inhabits my throat and chest constantly,this phlegm that goes up and down ,but won`t go away.
I wrote a hand-written letter to my mum yesterday and i write like an old lady,finding it hard not to stop my fingers shaking-another side-effect of the drugs i am taking ,i am told.
Still, ifeel like griping today as you may have gathered so I thought I might take the opportunity to give you a few tips on how to handle cancer sufferers or even any seriously ill people.please do not take offence-it is meant as constructive advice.
Do not avoid us.We already feel like lepers,like we are somehow dirty,that people talk about you behind your backs.
I f you do not know what to say,say just that, or just say you are sorry.
Ask how we are,but don`t expect a glib answer back ,like fine,thank you-the best you should expect is "thanks for asking -i am having a good day",or" Thanks,but it is not great today".But do ask,it means alot.it is surprisng how many folk just launch right into their own health problems and then say something crass like-but of course it is nothing compared to your troubles-as if you need reminding.It is good to hear people talk about their aching joints from running etc,...but it should be reciprocal.
many cancer patients are called brave and courageous and i think the majority would agree that they hate this description of them . I usually say nothing when people say this to me but it makes me angry ,as i am just doing what i can to stay alive,there is no choice in the matter-yes ,it is very hard to bear at times,but you just have to get on with it and do the best you can.I want to survive,I am not scott of the Antartic prepared to sacrifice my life in the hope that others might survive.That is courage.
"You must stay optimistic-"is a kind of blame culture.I know people mean well by it ,meaning if your morale is good ,your illness is often easier to tackle.But the patient hears,so it is my fault if i die from this cancer ,because i let it get me down and brought it on myself.You try being positive all the time,when you are feeling wretched,and death is on your mind a lot of the time and you can`t chase the thoughts away as they seem so close.
Another bug bear is people seem to think they can ask you personal questions they would not dream of asking others. Like "do I believe in God?" If I do,I ain`t right impressed with him now,and if i don`t,then i am not suddenly going to start in the hope that he will cure me Cos i am a believer or that it will give me solace.Nothing will give me solace from losing my children and husband.
What you can do to help is be Positive and encouraging yourselves.You do not need to say anything ,(especially,it is going to be alright),but put your arm around the person ,show some warmth ,be normal. smile and talk about your world -we are still part of it ,even if we can`t participate as fully as we would like.
have agreat weekend.





















What YOU can do to help is be Positive yourselves ,put a warm arm around us and show us your love-you do not need to say anything (especially "it will be alright")

french

A friend who works in a french hospital has told me that her colleagues have been trying to decipher my blog in english.Is there anyone out there who knows of an easy way to translate my blogs.After all,it should be interesting for them too,and as my children are running the marathon for french and british charities,it only seems appropriate to provide my feelings in the two languages.Any ideas welcome.

nothing is simple

not much to report today,except felt sorry for my husband yesterday who spent a long time tramping the streets of Poissy trying to find the department that deals with handicapped,so that he can get the ball rolling for a parking badge . Only to discover that it was shut!
The doctor tried to help and wrote aletter ,which i could show to the police should i get a fine,by parking without a badge. But I heard that some disabled people scratch your car on purpose,if there is no badge on show! whAT A WORLD.!
I AM GETTING MORE AND MORe BRUISES ,PARTICULARLY ON MY LEGS AND HAVE NOTICED ARTHRITIS SETtING IN IN MY HANDS,but I am feeling O.K. and hope you are too.

BAFTAS - or- Best Friends Awards

Watched the BAFTAS last night ,and thought I would do my own version of " Thankyou`s "and , "if it wasn`t fors" to people who have proved invaluable friends and support throughout my cancer trials. They may not think they do much,but,believe me,it takes just one tiny act of kindness,to change you from feeling you can`t go on ,to finding a fighting spirit again.
There is no specific order,and I may forget someone I shouldn`t,as they do on the big screen,but thank you to you all who spare a moment for me.
Ann and George,who are in constant touch with me and send me dvds regularly that keep me occupied in my times of tiredness and loneliness.I always look forward to their litle parcels.The films and friendship give me a lot of pleasure.
Lindsay- An unexpected friend only relatively recent since she heard of my problems and stepped forward without hesitation to see what she could do.For several years now ,she has unerringly kept in regular touch to see how I am doing, has accompanied me to hospital, and gives me regular Reiki sessions which heal me in that they calm me ,and to know someone is prepared to concentrate solely on you for an hour is flattering and rare.
Rosemary and Tony-local friends who offer to drop everything anytime to come and help and do not just say it ,but have proved themselves many times.Both John and I enjoy their company and they are our social hub.They find it natural to help others if they can.
Madeleine - despite living more than an hour away,and with many burdens of her own ,keeps smiling and giving encouragement ,and goes out of her way to visit me frequently.
Pam and Phil - Pam retired as a school teacher recently and set off to the states where one of her sons lives,to help him move from one side of the states to the other.On her way she sent me regular updates of her travel experiences which I thoroughly enjoyed reading and felt I was participating in.she also sent me photos,one of which was an amusing one of her and her husband on a bed ,she knitting ,he reading a book ,looking a little whacked from the many hours driving.
Little did I know ofthat she was knitting me A SHAWL which i wear all the time,keeping me warm and reminding me of her states venture.
Cath and Pam- Both Cath (another school teacher,but who I met through our husband`s love of cricket) who made me a patchwork quilt,and who have four bright children.
Denyse Boaler - I met denyse playing netball at the Bitish School of Paris,and I gave her French lessons and became her friend and she organised a run on my behalf when she cried that she did not know what she could do to help me when i told her of my cancer,and with the support she rallied from the British school ,I was able to go on a holiday and remember what a beautiful world we live in. She has moved back to England now ,but we are still in touch.
Lynn and Kevin- Lynn cries with me and sends me virtual hugs and says the right things.She has dropped everything at a moment`s notice and caught a flight to spend time with me when I am low.I know Ican stay with her and will be welcomed no matter how I am feeling.
Olivia- has moved to Korea ,and I derive alot of pleasure hearing about life and culture over there.
Ann, Richard yelland-have three wonderful and successful children and a busy life but still find time to see how I am doing.
Others who care are: Christine freeman who regales me with stories of her grandchildren-I long to hold a baby and sense that wonderment of new life,which I was too busy to appreciate when I had my own babies.
Margaret-a nurse by profession ,but a friend to me who likes to come and get me out in the fresh air a bit.
I am sure there are others who all do their bit that makes such a difference to my life,but the main pillars of support are of course my husband and daughter and son.
They have their ways of dealing with my illness as it affects them deeply,of course,and they go through the same emotions as I do,anger,tears blame ,the unfairness etc, but their loyalty and love knows no bounds-and they even put up with my embarrassing dribbling!
Thanks even to their friends,some whom I have never even met ,but have sent notes of encouragement which puts faith in the future for all of us if we have children who care like that.
I wonder if this beats last year`s Kate Winslet`s speech.
All for now,keep talking-it is good to talk.

mama told me....

just a quick note to say i am sorry about yesterday`s blog.I had a few comments ,which are always welcome,but it was felt i was rather "preachy ",and as i remember my mother always saying to me as a child,that I was too bossy for my own good,I want to apologise to my readers and hope I have not alienated you.
As my daughter is over from London ,I asked her to take me to the hairdresser`s to see what could be done to my wispy hair.She could explain on my behalf if there was anything that could give the illusion that my hair was thicker than it is .Despite the hairdresser being friendly and sympathetic and my daughter very protective, I found it a harrowing experience.I can`t lean over the sink to have my hair washed as the saliva runs down my throat and it is like a tap is turned on and you can`t swallow qick enough -so had to keep stopping every few minutes.I felt people were staring at me too,although they probably weren`t.Anyway,100 € lighter and feeling foolish for expecting a miracle.
I do have a wig,and it is a good quality-it cost about 800 pounds,even though that is not real hair,but it is not the same and it moves or the band gets tight around your head which tends to be sensitive.
Never mind,it is the weekend and i hope you enjoy and sing along to the music.

Playing Russian Roulette

First of all,sorry I have not been in touch for a few days-events just overtook me and being a moronic middle-age woman ,i just ranted when the internet kept going down and gave up.
But,having said that,I want you readers to know ,especially the young ones how happy you made me the other day when Jack,my son mailed me to say you were reading my blog.It gave me a real boost,which is good for my health and also it is what it is all about- getting info out,taking notice and maybe saving a few lives in the future-your future.
Itis not for nothing that they are running these adverts at the moment about drinking and the harm it can do (including mouth cancer).It is not like your yoghurt advert or your "Vanish" advert where one spray and the stain is gone-cancer of the mouth is disgusting as well as deadly.
No-one is saying don`t go out on Saturday (or is Friday the new saturday?) and get plastered-now and again-it is what students do and life is for living,but nursing that hangover the next day is a walk in the park compared to sufffering the possible consequences -maybe years later,maybe not , of never being able to eat another Subway or Macdonald`s ,or being invited to the pub ,cos you can`t drink .In your head you can talk normally,but what comes out of your mouth is gobbly-gook .To be honest,you ain`t just got cancer ,you are a bit of a freak and outcast.
Litle Britain could make some some funny macabre comedy sketches about people with this disease cos sometimes you just got to laugh.
I dribble and spit everywhere-you can tell where i have been and it reminds me of when Jack had a spanish teacher who made him sit at the front of the class and he swears he learned very litle as he was busy wiping his face with her spittle all the time.
I needed to go and buy a present for a friend the other day ,and as i was feeling relatively strong went on my own to the parfumerie and bought the perfume i was after,but i wanted it giftwrapped which is quite normal in france ,but the shop assistant did not offer ,and i had forgotten to bring pen and paper with me to write it down ,so i tried talking and sign language,but they were more interested in just doing the transaction,so i gave up ,and paid up.But this really upset me-such a simple thing.
Ladies ,i would love someone to take me in hand and re-do my face.I still want to look nice and wear make -up and ear-rings,but my face shape has changed and i no longer know where to apply blusher,or which foundation to choose as my complexion has changed with all the toxins in my body- i would love to have highlights but my hair is fragile. I would even appreciate a pair of feminine knickers that don`t fall down as i have no bottom any more!
I could go on,but these are just other side-effects to cancer, that are hidden but so important as they are just as relative to the disease as to the physical aspects of the pain etc.Humiliation and loss of dignty and respect are killers too.
I apologise for this rant,but i do feel it needs to be pointed out.It has made me feel a bit better and i hope it serves as something for you to put ,but keep to the backof your minds-consequences of your actions will take place sometime ,whether it is drinking,smoking ,taking drugs.Enjoy yourselves too as life can be short-you will either be a lucky so and so and sail through life as plenty do,but you might not it is the throw of the dice-but my advice is -it is not worth playing russian roulette with it.
i hope you willkeep reading and all you students supporting me and my children I am rooting fot firsts for you as you deserve it just for being decent human beings,and I am fully aware of the challenges all you young people have ahead of you in this mess of a world at the moment ,but it is your war and a different kind that my generation had to deal with,but I am confident that you can meet those challenges.
Enjoy the weekend.

reseau emile

Just finished a two hour informal chat with a couple of people who organise this pool of doctors and nurses to work in unison. The idea is that everyone concerned with my case are "au fait" with my treatments etc. They keep a dossier and if there is an emergency,it is possible that the ambulancemen /doctor should be "in the know" about my case,thus avoiding a lot of wasted time explaining when they arrive NOT that i could anyway.Sounds good in theory,and must not be cynical and is certainly a good idea.Spent much of the time going over all the medicine i take,and although they know and took the time to explain some things i was not quite sure about,they cannot prescribe themselves.They told me how to go about getting a handicapped badge,but it takes ages in France to come through-so why can`t these steps be taken in anticipation-when you are on chemo ,everyone gets tired for example -surely it can`t be too difficult to organise temporary ones to be renewed if necessary?
Anyway,that is another job for John to sort out as he has to do it -they can`t.
So, I have mixed feelings and it will be a case of suck it and see.
I am feeling rather low today as I have a urine infection and had to go to the doc`s in the morning AGAIN and then the chemist AGAIN-it never ends,then the afternoon with these medics.
I am pretty sure they don`t offer anything as sophisticated as the Macmillan nurses as they don`t give moral support-but for the French they are on the right track.
Had a lovely walk along the river Seine yesterday,watching children playing with the ducks and joggers running by in the cold but refreshing air.

valentine

what type of roses,what length,what chocolates,lingerie, etc-what a load of commercial rubbish-but if that is what it takes to remind you of the importance of re-iterating to someone you care and love them and send them words of affection ,it is a positive thing. I think all of you out there giving me support in any way are marvellous!
Apparently the Reseau Emile ,i mentioned in my last blog are an association which sounds like the near equivalent to Macmillan nurses in U.K.,and rely entirely on donations ,so i shall be focussing on trying to help them financially in the future,so if you are thinking of helping out ,can you hold on until I have more info on how they organise matters? I think it is quite a new idea in France.
I am so lucky-I am lying in bed overlooking a wintry scene of snow on hard-ploughed farmer`s fields,watching people take their dogs for a walk in the sunshine.
I didn`t have such a good night,indigestion and coughing phlegm,but the sun is spurring me on to get up and have a little walk.
I am missing my mum,but she has a little dimentia and i can`t talk on the phone and she doesn`t use a computer and she sometimes loses the post so i don`t k now if she gets my letters-so i hope the roses i have just been cynical about will reach her.

visit to G.P

Doctor recommends setting up a meeting with a team of doctors and nurses to co-ordinate my treatment.Although,I know this is a good thing,it makes me feel i am hurtling towards palliative care and the last stages -when i still feel ihave so much life(as it is) to give.
Feeling ugly and wish someone could come and work wonders with my hair.Must stop self -obsessing.
Don`t forget to sing,whistle,kiss and smile and keep TALKING.

last night

had uncomfortable night ,coughing up phlegm and spitting blood.I think it is time to ask the doctor for some anti-depressants too.
John gave me the most wonderful cuddle-i melted like butter into his arms-the best of medicine.
I enjoyed watching "Bright Star" poor Keats dying at 25!
Enjoy your day.

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

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