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.