mercredi 31 mars 2010

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!

mardi 30 mars 2010

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.

lundi 29 mars 2010

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.

vendredi 26 mars 2010

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.

jeudi 25 mars 2010

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.

mercredi 24 mars 2010

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.

lundi 22 mars 2010

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

dimanche 21 mars 2010

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!.

vendredi 19 mars 2010

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.

jeudi 18 mars 2010

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!

mercredi 17 mars 2010

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 .

lundi 15 mars 2010

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.

vendredi 12 mars 2010

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.

lundi 8 mars 2010

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?

dimanche 7 mars 2010

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.

samedi 6 mars 2010

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.

jeudi 4 mars 2010

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.

mercredi 3 mars 2010

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.

lundi 1 mars 2010

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