dimanche 28 février 2010
samedi 27 février 2010
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.
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.
vendredi 26 février 2010
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")
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")
mercredi 24 février 2010
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.
mardi 23 février 2010
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.
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.
lundi 22 février 2010
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.
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.
samedi 20 février 2010
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.
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.
vendredi 19 février 2010
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.
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.
lundi 15 février 2010
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.
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.
vendredi 12 février 2010
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.
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.
mercredi 10 février 2010
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.
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.
mardi 9 février 2010
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.
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.
samedi 6 février 2010
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
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
vendredi 5 février 2010
mardi 2 février 2010
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