Back and blogging

Happy New Year everyone. Its going to be quite a breathtaking one for me that is for sure. I arrived back in Birmingham to a house full of children on 29th. The journey by car through Germany, France and England was pretty debilitating but not for me, I slept most of the way, poor Sam nursing a terrible cold had to do the lion's share of the driving. We had had a wonderful Christmas in fact, a veritable feast of fois gras and confit de canard, Boxing Day visits to Dresden to eat cake and watch the world go by, traditional bubble and squeak and lots of falling asleep in front of old Woody Allen films. But today we are doing it all again, 17 people coming to have delayed Turkey with a duck and pheasant stuffed up its bum. So I cannot spend much time blogging about lung operations. I will add a detailed report tomorrow when things calm down but leave you with a Limerick we came up with in between Woody Allen films and replete with Sam and Julie's first attempt at Christmas pud:

A krankenhaus quite close to Dresden
Is the one place to get lots of mets done
The staff are all charming
But the price is alarming
So come on lets get it into Royal Marsden

Sorry things can only get better, keep reading

Blobectomy + 6

Well all seems to be going swimmingly , I haver no tubes or lines or drains; almost like a human being again not the Pompidou Centre. Yesterday the doctor with twinkly eyes, told me that the pictures of my chest were very beautiful; perhaps the eyes were not twinkly but a bit out of focus . Anyway tomorrow - have to have another very beautiful picture and it is very important as its the first since the drain was taken out.* You might think that a chest without a drain is intrinsically more beautiful than one with. But apparently not always and one bit of mine might be flat now - know it seems unlikely as my life since about the age of 10 has been one of pneumatic expansion.

For those looking for something a little more technical than my usual meandering. I am writing a report that I will post on the blog once my German visit is over.


Fingers crossed for tomorrow.

* A note from Jess: I am useless at writing these posts mom sends me, so this is a day late and tomorrow she talks about is actually today and she had the test and is completely fine will a fully inflated chest, considering I have inherited my mothers chest its full inflation is no surprise to me.

44 and counting

Hi all. Mom had the operation, Dad tells me she was up and talking and doing really well and was in little pain. Dr Rolle removed 44 blobs from her right lung and I think the operation was a success. I will know more tomorrow and will update then.

Heavy Breathing

Dear all readers, below is the entry mom asked me to write on Friday, sorry for the delay but I have 2 small children, 2 christmas plays to attend 2 costumes to make so I am a bit slow.


I have never been good about taking instructions about breathing. To me it's just what I do. But you know when you are driving and for no reason you suddenly decide to think about which foot goes where and why and you go to pieces. It's the same with breathing for me and so it has been today. If they say breathe out I panic and forget about my nose and splutter everywhere; if its breathe in I gulp like a drowning woman. This is a sad fact as I have spent the whole day learning how to use various contraptions to add oxygen or saline fumes to my spotty lungs. I was a slow learner but for the one where I have to make the smiley face go up and measure my lung capacity I have gone to the top of the class. Fat old ladies class that is


I also went to the gym for the first time ever. We just sat on stools and waived sticks around so it was my type of exercise. One was like rowing and I thought about canoeing down the Dordogne; amazing how often lovely France come to my mind in moments of extremis.

Dr Rolle says definitely for Monday and yes we can go for Gluhwein in Dresden tomorrow. I will miss the spluttering and gym but knickers to it, and if any other heavy breathers want to know I gave them up years ago.


Just an update from me (Jess). Mom and Dad had a lovely day in Dresden, really liked it and ate some lovely food. As I type Mom is in her operation so I am trying to distract myself from worry, but it turns out that watching loose women makes me wish I was under a general anasthetic. Mom not back for Christmas so team Trainor/Phillips are going to Dresden on 22nd -24th to see her and we will be extending chritmas well in to the new year, no problem for atheists like us!

Sausages Sausages

So far the worst is the wurst. Breakfast, lunch and dinner, wurst goulash, wurst soup, wurst sandwiches, There is absolutely no chance of keeping to an anti-oxidant diet not a glass of red wine in sight.

Today they tested my lungs and I don't know yet if I passed. For one test theyfitted contraptions all over me and got me to cycle. I tried to think of my friend Bernice cycling up all our hills in our French village but she speaks German like a native so would have got much better marks than me all round. If I managed a C they will do me on Monday.

Stewart now has a room in the hospital so we can be bored together. He is OK apart from the hard seats and he doesn't complain. After all he says, 40 odd years ago he promised to love honour and obey me for better or wurst!

PRIMA!

HI all , this is Jess writing for mom, just an update not a lierary masterpiece Im afraid! Lovely Dr Rolle has said that he will do the operation although one of the mets is quite large. Because of said fat blob her recovery will most likely take a couple of weeks so if she has the operation as scheduled on Monday next week she will not be back until after Christmas, a source of great disappointment for us all but also of great hope. Would write more but have got to contact my brothers and make arrangements for us to go to Dresden for a few days, if only my mom had been sensible and only had 2 children it would be an easier task, but then again I wouldn't be here so plus and minus! Thanks all so much for your support and cheering on.

wunderbar

So we are here in Dresden or to be more accurate Coswig, a suburb. We are esconced in our room and I have wifi for .50 euros an hour. Wunderbar. The journey was uneventful apart from Stewart upending a glass of orange juice all over his crotch. I am sure it was a ruse to get the stewardess to mop him up. I also made a bit of a fool of myself at Zurich airport bemoaning loudly the cost of a glass of wine and a beer completely forgetting that they still use francs not Euros.

There was not a gnome in sight by the way; they must all be helping Santa out. Tomorrow we will walk to the hospital which is just round the corner and see Dr Rolle; he will scan me and I believe put me on a treadmill to see if I am fit enough for his team. Fat leg might be a disadvantage as might all those dinners I have been eating but I will do my best. I was once the Warwickshire (for American readers county in the middle of England famous for William Shakespeare)sprint champion and had awesome lungs. Trouble was if I ran more than 100 yards I used to throw up, once all over Stewart and that is how he fell in love with me- funny boy. Lets hope I don't repeat the performance tomorrow; I don't think Dr Rolle will be wooed by vomit, he sees to much of it I would think.

Right we are off to sample German food and to dispel the rumour that its all pig and potatoes. Quite keen on both actually. More news tomorrow

Love hurts

I have never been one of those women who beat themselves up because they haven't been a perfect parent or boss or spouse. No mea culpa and breast beating for me; I did my best and sometimes I did my worst, I am only human after all. But since 9/11, not you know what but the day I was told about my lungs and what it might mean, I have felt this ridiculous kind of guilt and nothing I can do seems to be able to dispel it.

I feel I have let everyone down by letting this thing get a hold of me. When I told my children I apologised. I was saying although, I didn't, that I was sorry to be exposing them to such worry and sorrow. I have always tried to protect them from exactly that and although I know I can't do that as the world is not always a friendly place, and none of them take the easy path; I never wanted to be the bringer of sadness to them.

I was always terrified, right up into middle age about my Mom dying, in the end she did it bit by bit and very gently and it didn't hurt hardly at all; she lasted till she was over 90 and we all knew it was time. Now I even feel I am letting her down and my Dad and I look away from their photos and pictures as I pass them. This is not what they had in mind for me.

What I want to be able to do is tell my children not to hurt but they will. I want them to be strong and not let the sadness damage them but I can't make it happen and I can't lay any daft guilt on them in case at times it all gets too much. It's the missing that's the worst and I have thought about buying a few years of phone credit and leaving a few messages. You know press 1 for advice on relationships, jobs etc; press 2 for well done and you are the best whatever happens messages; press 3 for load of old rubbish comments about modern parenting guidance; press 4 for babysitting duties: yes bring them round but ask your Dad first; press 5 for general words of encouragement and affection. I could also store away a few years of carefully chosen Christmas and birthday presents or leave a forward Amazon order; a wish list.

And what about Stewart - well another strange irrational feeling; this time that he is in it with me, I always refer to we and us about what the doctor says or about what treatment we are opting for. We do sometimes talk about "after" but it feels like Japan or Siberia a place we know about but can't really imagine. The guilt feels less with him because somehow we have always lived with an element of uncertainty and fragility; as do all couples.

Sorry to be so gloomy but I have pre-Dresden neurosis; I will stop as my friend Doug reminds me it's a place of hope and reconstruction. If they can build back a shattered city, then my silly lungs should be a doddle.

I will take the laptop with me and test the Vorsprung Durch Technik but if it doesn't work, I will get Jess to do some update posts for me.

Watch this space and I will return in time for a wonderful Christmas; you all have one too and many more to follow

Tears and a trip

I didn't blub when they told me I had it in my lungs and it had it in for me big time; I didn't blub well hardly at all when I told my kids; I don't blub much in the night when I think about leaving everyone but last night over tandoori prawns and aubergine bhaji the floodgates opened. Next to the table where weirdly dressed young people cracked crackers and talked loudly about sex, dear friends Chris and Denise said they would pay for our ticket to Dresden and I just lost it. Why I don't know; why should that make me weep? It still does and not for the first time I wonder about myself and my reactions to this monster; all out of my control at times clearly.

Anyway you will gather from this and you will be right that we are off to Dresden. On Tuesday to be precise. Up till recently Dresden has meant delicate china and less than delicate firebombing by us in the war now it offers me the chance to get the blobs out of my lungs and to challenge their mates not to bother to move in to take their place. It's a bit tight for Christmas so I have bought the tree, wrapped the presents and written the cards. Tomorrow I will leave instructions for my sous chefs, namely the kids and their partners, about what to do for the Turkey (actually a turkey stuffed with a duck, stuffed with a pheasant) dinner.

They still may not do me; they may think the blobs are winning in which case Dresden will turn into one of our trips of a lifetime and we will begin our Weinachts with a bang and not a whimper in sight.

My NICE presentation

Back from the NICE conference, my organisation runs it and I designed most of the programme; I really only went for the beer and the dancing but sat in this morning on part of the session on drug evaluation. When I put this session together I included, as I do, someone from NICE, someone from the pharma industry, a PCT Chief Executive and a " commentator" I didn't think to include a patient's voice, we didn't have time. Five minutes into the presentations I realised I should have and that the patient should have been me.It was a very good debate and the case was made quite strongly for collectivism and for spending limited resources for the greater good. All sentiments I have concurred with for years but now I have a different perspective and if I had included myself on the programme this is what I would have said.

Good morning everyone - who's this you are probably thinking. Isn't that the woman who used to be at the Confed, used to be on the telly quite a lot; isn't that her that used to chair that mental health trust, she was on a PCT too wasn't she; isn't that the person who used to bang on about equalities, she trained us once on the Race Relations Act or was it the DDA; it's her organisation isn't it that helps to run this conference, she invited me to speak. Yes that's me all of those things but as of last year I am something else; I am one of those people you have all been talking about, the elephant in the room. I am a rarity, I am one of the people that fall off the edge of your collectivism Ian (Sir Ian Kennedy- the commentator, lawyer, ethicist, new checker out of MP's expenses). I very probably don't have enough QALYS to qualify for one of the drugs you are currently considering Andrew (Andrew Dillon, Chief Executive, NICE; the drug Yondelis). I am too much of a one off to be worth one of your members investing money to research how to save me Richard (Richard Barker, Chief Executive, ABPI) and I am one of the people, or very nearly I live in a different part of Birmingham, who puts terrible pressures on your budgets Sophia (Sophia Christie, Chief Executive, Birmingham East and North PCT)and who you argue should be sacrificed for the greater good; if you don't treat me you can treat 10 more people with common old breast cancer or 200 with CVD or try to stop 300 smoking.

And I am not here to embarrass you, to make you squirm in your seats; I have always nodded, understood all of these arguments; I chaired a PCT special cases committee for God's sake and manoeuvred colleagues through these decision making processes. I am a collectivist, a socialist, a believer in the NHS. But I want to just give you the benefit of my new perspectives; to add a few more thoughts to your debates.

Firstly the equalities argument - I am aware now of a new form of discrimination to go alongside the racism, ageism, sexism etc that I have been fighting all my adult life and that is rarism and it is I am afraid thoroughly institutionalised in the NHS. It's used as an excuse for fatally poor diagnosis; for scanty provision and for lack of investment. Can we as a civilised society really deny one person the opportunity of one more summer or Christmas; when we offer it to another. Is it any different to denying interpreting services to a non-English speaker, or a hearing loop or a signer to a deaf person because those too have opportunity costs? It is most definitely discrimination, rarities it seems are disabled people whose disability can safely be discounted for the greater good.

Now collectivism, a difficult one. When we unpick what we mean by this it reveals how messy it all is. Just a few thoughts to add to the mess; when we become tax and National Insurance payers we sign up for the NHS, we know that we may be lucky enough to earn more than others so pay more than others into a system that is set up to take care of us and those worse off than us; some of us pay in all of our lives and never take a penny out, others cost a fortune. We are not handed a list of exclusions with our first pay slip that says you are covered for this but not for that. We are not given the opportunity to opt for an excess or an extra payment to cover us for the very unlikely chance that we fall victim to a rare and expensive disease, we trust that we will be covered. When that cover is taken away from a group of people on the grounds of cost benefits then is starts to feel dangerously close to the US system where insurance companies refuse treatment because a person's entitlement has run out. And we all sneer at that don't we.

Another thought I have lung cancer, it happens to have come from a one-off leiomyosarcoma in a peripheral vein, yes check it out boy am I rare! rather than from a cancer stick I have stuck in my mouth. Even without bashing smokers who in the end probably can't help their addiction, aren't I at least entitled to as much money as them to keep me alive for however long. If we are a collective doesn't this seem fair.

Finally on collectivism, I fear it is fatally flawed and I cringe to say it. I fear that it is leading to dangerous reductionism. In order to give the greatest good we are spreading ourselves too thinly. I can only use the evidence of my own case study; I presented with a fat leg, fatter than the other. Classic symptom of a DVT that much I gleaned from the internet. After a couple of scans something was found in my vein high up, so quick swoosh I am on the DVT track, on the word of one SHO I am prescribed Warfarin and for 6 months I see no healthcare professional other than the phlebotomists who take my blood and give my INR readings. After six months a phone call tells me to stop taking the medication and that is it; no follow up no nothing. But hey my leg is getting worse so back I go to the GP who refers me on to a cardio - vascular consultant. I go two months later (waiting list targets met - tick) no further scan is taken but a Senior Reg tests my pulses and recommends compression stockings and continued Warfarin. Three months later it's actually the consultant I see and he remarks on my stocking, but doesn't feel my leg or order a new scan; I question this and a scan is ordered for 6 months time, an ultra sound doppler test not an MRI or CT scan. I go to France on holiday get bitten on fat leg by a mosquito in a rural backwater; it turns nasty I go to the local GP in tiny village who immediately sends me to a consultant who immediately orders tests yes CTs and an MRI and within a week finds it's not a DVT but said rare leiomyosarcoma. Rolls Royce service as opposed to Reliant or rather unreliant Robin. When I complain later the consultant says he was following protocols, I am extremely rare and he couldn't be expected to discover that. The system is set up to deal with the many not to discover the few.

Finally and I will make it quick because my lovely friend Yvonne has signalled I only have two more minutes I want to talk about evidence. It's the gospel, it's what we must have, it's what we must base our decisions on, of course it is. But when you are a one off where is the evidence? how do you know this or that will happen or this or that drug will only buy you this or that much time? The few who have my condition, don't have it where I have it, have tried this or that other medication. The evidence I have from survivors who email each other and now me, is that survivors have tried everything going and will try more if it comes along. For my particular condition I am the evidence, it dies with me so for the benefit of science if nothing else isn't it worth keeping me going for as long as possible

That's it, the lights on red, I leave these questions with you and very much hope to see you next year.

Ich spreche Deutsch

I must have listened to some of what Miss Jones tried to ram into our heads in German forty odd years ago- even though I failed it at O Level. I managed to communicate with the German doctor's secretary and got put through to him. Nice chap but he hadn't received the CD of my CT scans. He will look out for them and we will make a date.

Back home Batman spoke to Robin and emailed me as I had told him how peed off I was that he wasn't there to give me a second opinion or in fact any opinion. He had looked at my scans, funny how many people are now au fait with my chest; it was quite a select bunch heretofore. He thought that it was interesting that the tumours varied in size so much (back to chests it brings to mind that classic ditty: one was so small it was no good at all and the other so large it won prizes ta ra) and thought that they had probably been seeding over a long period - ie when the original tumour was a DVT according to the so called experts - and that glory be they may be quite slow growing. Well they can be as slow as they like as far as I am concerned. They can come a very poor last in the tumour Olympics; they can be as slow as the slowest slow worm; as tardy as a tortoise on a bad day. Just slow down to stop Leio and I will be happy.

So more scans of chest here so Batman can resume his superhero status and more spreching the Deutsche hoping I can make Dresden and back before Christmas. Tonight off to the NICE conference dance where I will be wishing that both aforementioned chest and battered groin were up to compromising a few of the attendees so that they would be forced to recommend the only drug to have come out recently that offers us poor rarities any hope of a few more knees ups. Who knows what might happen after a few drinks so Gesundheit for now.

Batman not Robin

So what did the main man at the Marsden have to say? Nothing as I didn't see him. £180 on train tickets, Jess taking a precious day off work, lots of emotional build up and Robin turned up instead of Batman. It went something like this.

Lovely lunch in Pantara, Thai restaurant few doors down from Marsden. Get to reception on time and wait to be called; not much waiting time; we all troop into small room with three chairs and a consulting couch. After a short time a doctor comes in; he looks younger than each of my sons but has grey hair, I wonder later if he dyes it just to add gravitas. He speaks quietly so I ask him to speak up and I gather that this is not Ian Judson; he is not in the clinic today; panic what do I do and say? I don't want to be rude to this nice chap, because he is very nice and Judson isn't here so I have to have what is on offer. He introduces himself as Dr Robin Jones one of the consultants on Judson's team and he mentions Washington. I think for a moment that he is saying that he is seeing me because Ian Judson is in Washington or is going to Washington but no he is saying that he, Robin Jones, is leaving to work in Washington next week. So now I am thinking he is saying I am not seeing Judson but I am seeing him and he is buggering off across to America, draining his brain presumably.

I start to feel very disappointed, I have a nice man in Birmingham why am I bothering with another one here in London? but he asks me to tell my story and he is very nice and so all my good upbringing comes into play, damn it, and I don't kick up a fuss; I story tell away. I conclude by saying with a smile that I had hoped to see Ian Judson himself and we all look away and feel a bit bowed down and embarrassed in our British way.

He is apologetic, mostly for the great big NHS cock-up that got me here in the first place. He knows his stuff and he talks about the pathology, about my particular sort of vascular leiomyosarcoma; about the lesions in my lungs and hey ho guess what they are all the worst sort and yes they will discuss me at their absolute top level lung meeting on Friday, when presumably Judson will be there and they may just be able to consider rodding my lungs with radio waves but they have only ever done 6 lungs (or maybe 12!)with this technique. I ask about Rolle in Germany and he sort of laughs and changes the subject even though we push him. He does concede as we become less compliant that he understands that we have to consider every option and that they are not offering much that sounds hopeful. He is lovely, I know he cares, he strokes my shoulder as we leave but in a short half an hour my morale has dropped and I start to feel sorry for myself. It's not what he said although it's hard to hear it - it was what I knew he or even Judson would say - but it is an irrational feeling of being abandoned, of feeling I deserved to see Batman instead of Robin and that the NHS has let me down yet again.

We struggle back on the rush hour tube, and I think perhaps I would rather be dead than doing this and again and again we mull over the options. We will call Rolle in Germany on Wednesday when he is in; if he says yes we will go and take the only positive thing on offer.

And don't worry folks I will bounce back; I have emailed Ian Judson to tell him I am not happy and I am going to do a bit of rebel rousing with my old friends in the NHS; setting a few feathers flying will cheer me up no end.

Initial confusion

Jan over the road reminds me that LMS just used to mean Local Management of Schools; one of those sets of initials that formed the subject of endless discussions amongst my friends and family, almost all of whom are teachers. I was always an outsider trying to keep up with it but mostly just letting the words wash over me. My particular LMS is not so easy to ignore and unfortunately I don't think there are enough professionals chewing the fat about it in middle class kitchens in order that anyone is going to do anything about it.

It's not the only set of initials that has suddenly taken on a new meaning. It's as if as soon as I retired from my strange job on the fringes of the NHS the whole world of acronyms changed too. I used to be a NED, that used to mean a Non-Executive Director, I was even a chair once, no not a piece of furniture a sort of leader, I used to run conferences for NEDs and train them in what to do. Now in a matter of a few short weeks NED becomes the height of my ambitions as NED now means No Evidence of Disease. We no-hopers don't have remission it seems but some get NED for a while and we all try to join their club.

Even BPC has changed. Up till last week even that stood for British Pharmaceutical Conference; one of the events my company helped to run and the subject of the vast majority of my email conversations. It wasn't easy! Now it's "Bill Peeples’ Angiogenesis Inhibitor Cocktail"; a list of unspellable ingredients that lots of people who are NED in the US ingest in order to stay NED.

RFA used to be the Renewable Fuels Agency and we used to chat them up when we ran the EA (Environment Agency)event now its Radio Frequency Ablation, one of the ways they can blast your lungs free of mets for awhile in the UK; if they think it wise.

So LMS, after RFA or BPC or GDR (the Dresden connection) let's have you giving me a bit of NED PDQ

Everyday thanksgiving

It's thanksgiving in the US today. I know because I have many fellow LMS correspondents from the US now and also I was called on to make a pecan pie for my daughter who has an American lodger and follows her mother's dictum of any excuse for a feast. It seems that this is a time for counting your blessings which is a practice I try to carry out pretty regularly but somehow feel contrary today and want to curse my misfortune instead. There is nothing to bless in having this dreadful disease that is threatening to take me away from everything I love and everything I count as my blessings and no amount of thanksgiving is going to change that. So I feel a bit like the Native Americans who no doubt felt less than thankful way back whenever it was.

But I will give in and restore my usual joie de vivre. Below is a list of the things I am thankful for that have happened today:

I had a lie in and a long cuddle with my husband
The sun came out
I sent a photo of me and my lovely kids to a friend and felt proud of them..again
I had lunch with one of my dearest friends
My throat stopped being sore
I didn't feel any pain in my chest
I managed to find a parking space at John Lewis
I got the last of my Christmas presents for friends and family and wrapped up about half of them
Danny's sock monkey jack in the box arrived and he will love it
I soaked the fruit for my Christmas cake in twice as much rum as the recipe said
Jess's friend Jess opened her cheese shop and it was a great success
Gavin and Stacy is back on TV tonight
I didn't have to go to work because I am now properly retired
I walked up to the shops and my groin didn't hurt too much; I held my husband's hand
They had a Times so I can try to do the crossword before I go to sleep
My pecan pie was a triumph; if a slightly burnt one
Les bought my best cardigan back
Ruth liked her earrings
Graham invited us out for a posh dinner tomorrow
I found a chocolate mint in my mac pocket

Not sure that's enough to slaughter a turkey for but it will do till tomorrow.

Life is too short to...

Life is too short to:

Pluck my eyebrows
Moisturise - see what a slut I am
Clean behind furniture
Clean anything that doesn't show
Iron sheets
Iron anything that I am not just about to wear
Transplant seedlings
Read Proust
Master physics
Learn French grammar
Argue the toss
Jog
Ski
Shop at Lidl's
Get an HGV licence
Wear killer heels
Get religion
Learn to love football
Take arachnophobia therapy

But then it always was and now I might just:

Stuff a mushroom
Learn the tango
Paint a masterpiece

Feminist friends I know I used the term master twice in this post but mistress doesn't go and life is too short to be one of those as well; I might have to shave my legs for God's sake

Biting the bullet

Today I am going to the dentist; two reasons one I have been having terrible toothache and the woman up the road with drawn on eyebrows says its just because I don't clean my teeth properly; I am seeking a second opinion! Secondly I broke one of my teeth on pheasant shot last weekend; a middle class accident if ever I heard one. We had been congratulating ourselves on our bargain haul of game from our visit to Norfolk where they have proper butchers but now the repair is likely to cost hundreds. Typical Trainor luck.

It's one of the veneers I had done a few years ago and it's right at the front. I forget about it but Stewart feels the need to tell everyone as if to say no she is not usually this freaky; she just doesn't chew carefully. People are very sympathetic and it's clearly easier than empathising about my lungs as you can't see them.

The conversation with the dentist is going to be strange; the achy one he will want to save and do all sorts of painful and expensive root canal stuff I suspect. Save for what I will have to consider probably not a toothsome old age; so I may press for a quick extraction; but vanity will out on the broken one; it must be restored so for a little longer I look relatively flawless and people don't feel the need to look in the other direction and feel sorry for me...or for Stewart.

Institutional rarism! Discrimination sucks

There is a new form of discrimination which I find myself a very reluctant victim of.

I spent years of my precious time trawling around the country training NHS managers and clinicians in anti-discrimination legislation, the DDA, racism, sexism, ageism, homophobia..you name it if they did it I told them not to or else. But I find now that there is a new enemy to fight namely rarism. But not only do the Government and the establishment blindly practice this, they set up large institutions to defend it and proudly announce it as a justification for their acts and omissions; with the law behind them or so it seems. Institutional rarism writ large.

To me: "Oh we couldn't have discovered that lump in your vein was a cancer not a DVT because you are extremely rare" so that's alright then (funny how quickly they found it in France perhaps rarism is less rife there).

To many fellow sufferers: "No fibroids are very rarely cancer so you mustn't worry" so by implication and experience, neither will we.

Being a rarity in other walks of life is not a bad thing. There are those Antiques Roadshow moments when the expert lovingly feels the object and slathers the words: "this is an extremely rare object" and no matter how hard they try the proud owner cannot keep that look out of their eyes which means they are mentally licking their lips and rubbing their hands.

But in the world of illness forget it! What you have is rare so my conscience is clear that I never found it; or looked for it or looked at you for longer than five minutes. What you have is rare so no, no-one is investing money in drugs to try to save you, why would they bother, what's in it for them? What you have is rare so what little is available is very expensive and no we can't afford to pay for it, it wouldn't be fair to those ordinary folk would it? What you have is rare so we have no evidence that paying for anything is going to work anyway and we can't waste tax payers money can we? What you have is rare and there are only a few of you so it will not look bad on our statistics when we fail to save you, will it?

Let's superimpose you are black, Muslim, Jewish, female, blind, gay and/or old into any of those scenarios and see how comfortable our liberal sensibilities feel.

Time for a rethink maybe, time even for new legislation but probably too little time for us rarities, we are too expensive and most of us are not going to make it onto the Antiques Roadshow. We are the unexpected few and as old blue eyes so graphically put it: "too few to mention".

But wait there were those other "few" who won the war or something and who as a country we seem to revere; so watch out for us. Discrimination of any kind is wrong people! in modern parlance it sucks. Up with it we should and will not put and with a bit of help from our friends maybe the few will become the many and we will overcome some day.

Friends reunited

It seems I'm the talk of the town. The bush telegraph whistles round street corners and into hairdressers' parlours. So this week has been the time for very old friends to get in touch. It's another one of those bonuses of this strange new life of mine.

With those friends that are more like family there has been constant mulling and munching; daily calls and frequent feastings but now its the turn of friends from other times and other places. First Les and Jude; Stewart has known Les for longer than he has known me - 55 years to be precise and they are in that special band of friends that come from before we were married when we were very young. Memories are of pubs,camp sites and bike rides; getting drunk and sleeping on rugs; there is no need to discuss the sadness much, its a given so we move on and slip back into all the old stories.

Yvonne and Noel; Yvonne is my alter ego, people think we are each other even though she is younger and slimmer; we have worked together in perfect and very productive harmony for over 20 years and now we share randang and noodles, two bottles of red and have a proper laugh

Yesterday was packed with Gill, a friend of over thirty years and Theresa over 20. Life and its vicissitudes had made us go on different paths but one message from the telegraph and whizz back they come as true friends will. It was a day of swallowed tears, honest questions and lots of giggling and gossiping; right up my street.

And amidst it all a call from my doctor to discuss the German question, one from a recent colleague whose wife, like me, is a special LMS girl and a letter from the Marsden saying I must go on Monday week for my second opinion.

So Germany is postponed but not cancelled and I am looking for restaurants on the Fulham Road.

Should I stay or should I go now?

It all comes down to opinions, mine, his, theirs and learned tracts on the wonder web. Is this German to be trusted? He says it works for a lot of people and he doesn't just do it willy nilly; they, the learned ones say we have no verified evidence. And evidence is the be all and end all these days. Till the next lot of evidence turns up, and we all follow it like sheep, we must believe in what we have as if it is sent down from above on tablets of stone. The academic historian in me wonders just how many tablets we have in fact as it's such a rare condition, we all seem to be different from each other and to be pursuing different paths in the treatment tournament. But try to tell that to the learned ones who hold their faith to the letter.

The decision must be made and I am a professional decision-maker I should be good at it; but in the make believe worlds of management or business it's not my actual life that is the subject of the pros or cons; to go this way might mean I live longer, feel the sun on my back, the rain in my shoes and my husband's hand in my own.. or it might mean I reduce my chances. It's very hard stuff and I'm not even getting paid to bear this level of accountability!

The money is an issue as well as ever; how much time do you think it is worth spending £20,000 on? How many family Christmases; Danny developments; kids' hugs and humour; crises and crescendos. Is it too expensive for 6 months, worth it for 12? You may get 24 or 60 no guarantees of course, you may have got it anyway; you pay your money and you take your chance.

We all know we can't take it with us, there are no pockets in shrouds and now is the time for risk taking if ever there was one. Bear with me, I am taking more soundings from the pundits, keeping them on board and sharpening up my risk bearing brain cells. In the end I will just say **** it and burst through the door ..or I wont.

A European venture

It was France that scored first in the saving Mrs Trainor European Cup. Quick jab in the groin and hey ho a second half goal taking with it a primary tumour and one useless vein - first half had been the usual performance by England just doing what they always do and getting nowhere.

Now it seems Germany might do their usual trick and win the next round- OK I do remember 1966 but we did have to leave it till the last minute and I am not sure that will be a good tactic in this particular tournament. The clever old Germans have developed laser techniques that get a goal every time or so they say and so my money is on them for the next round.

When I say my money is on them its not just one of the contorted illusions with which this blog swarms, it will in fact cost me an arm and a leg but hopefully not a lung. I am still considering the transfer offer as to stay in England and continue the habit of coming a brave second is hard to break away from, and when they see me they might not choose me for their team; so I am seeking advice from my fans. There is more information on the team tactics at http://www.cureasps.org/cureasps.org/archives/98

Actually at the moment it all feels more like going over the top from the trenches - not a good metaphor I know as I maybe going over into the German camp. But we leiomyosarcoma sufferers are like the cannon fodder in WW1 - on both sides - being ordered to run out into no-mans land and take what is coming to us by the cancer cell generals. A few survive and in this particular battle they seem to be the ones that do their own thing; certainly they battle on despite numerous bayonet wounds and poison gas attacks. No choice to be a deserter in this particular war or believe me, I would be planning my escape across Northern France right now, taking in a few good restaurants and bottles of red on the way of course.

Happily ever after

A very busy weekend was had looking after Harry aged four and Danny aged just one. Harry had a new haircut which only served to make him more irresistible; he is already an irresistible force to be reckoned with. Danny, I conclude, is just like me: he tries his very hardest to be constantly smiley; he has mastered the art of walking but sort of lumbers about like his Nan with her fat leg - he has two fat legs if we are brutally honest. Like me, he just needs regular food, sleep and slathery kisses; he dribbles more than necessary and hates to be bothered by mundane things like dressing. It's clearly in the genes. He manages to ignore the dribble rash on his chin and the constant snot waxing from his nose; just as I ignore the silly cough, the pain in my shoulder and Mrs R in the attic.

Harry and I do easy peasey lemon squeezey jigsaws and we compose stories. I am the author he is the illustrator. A prince called Harry and a putative princess called Lydia - his lost love from nursery school - feature strongly. There is much living happily ever after which causes me to kiss Harry on his newly shorn head and look behind me to see the shadows creeping in the deep dark woods.

In the real world, where Prince Harry does not scale towers or put peas under mattresses but goes off to fight other hopeless wars, our ever afters depend on the memories of our offspring, family and friends. I know, however,that in our family they will be arguing about the memories, when we did this, how we did that etc. I just looked at my number 1 son, Sam's, website http://samtrainor.neuf.fr/info.html - I wanted to find his address as it's his birthday on Wednesday and I was too lazy to run upstairs for the address book. It's worth a visit and after reading a few of his notes and his poems I once again wonder how I bred someone so devilishly clever and " different". In fact I bred four of them; it must have been the fluoride in the water. Anyway he describes his family as " Cosmopolitanly Brummie, lovingly argumentative, laconically verbose, individualistically socialist, stoically epicurean, sceptically utopian, strictly liberal and downright uplifting" It's a good description and makes me feel proud and I know that that is how they will deal with my ever after.. they will be "lovingly argumentative" and I couldn't wish for anything better.

But what will Harry and Danny remember? I will endeavour to make memories for them along with the stories and the easy peasy jigsaws for as long as I can. After that it will be up to the rest of them to continue to be "downright uplifting" for each other and for the next wave of loving arguers to keep their ever afters going along with mine.

Being a leftie

I hope I dont lose any of my new blogging friends by this posting but those of you who know me are well aware that I have always been a bit of a leftie. Now I am coming round to the view that I am taking it all too far - as I am sure my past friends who have deserted and gone over to New Labour might agree. It has just struck me that from as far back as I can remember things have always gone wrong on my right side. I look at the gravel rash you can still see on my right knee; I remember spraining my right ankle one day rushing through London in my professional prime. When I was about 33 a fishbone or something pierced my colon forming a nasty bursting thingie in my insides - yes guess what it was all on the right side. So where else would the LMS invader breach my defences but deep in the right of me. And which one of my lungs has the biggest blob, the right one of course.

If I look in the mirror, (only mildly disturbing if I do it face on but in profile surely not, no that mass of sagging flesh cannot be me) I now look like one of those adverts for before and after where they draw a line down the middle of a mildly disturbing looking person showing one side all bloated, bald or baggy and the other side springing hair or restored to smooth curvy lines.

So the question is should I change direction; become middle of the road or God help me steer to the right? I think not, I would be in danger of messing up the whole picture; and being neither fish nor fowl. Not unknown in the messy world we live in but not, in my view, leading to much progress.

So I will keep my left side strong and keep on battling those gremlins on the right; or alternatively just get them to saw me in half!

Mrs Rochester

I seem to be giving the impression that I am being brave; I think I need to put you right and introduce you to my very own Mrs Rochester living somewhere near my bowels I think. She is pulling her hair and pounding the walls; rage,raging at the dying of the light; driven crazy by anger and fear. But meet also my very own Grace Poole, calmly efficient and able to only let the tiniest noise of Bertha's raging reach my cowardly ears. Even in the middle of the night while I lie awake listening for the movements, waiting for the footsteps and the lighted torch, Grace keeps her quiet and lets me sleep.

I know no other way, I have to cope and I have to be cheerful, the alternative is to end up like Mrs R and look what happened to her!

To the lonely sea and the sky

Short blog today readers as we are off to Norfolk for a few days (for American followers flat county to east of England with lots of sea and sky; famous for GI bases and romances in the war). Still following doctor's orders to cram as much in as we can.

Whenever we do this I think will this be the last time we go to a, b or c together? When in fact we probably wouldn't have gone back anyway and may have just daydreamed through years of budgeting on a pension and not doing what we had done before or what we had always wanted to.

I sometimes think about the good things about having this unspellable disease; its not a long list but it includes:

Having a fantastic time now
Feeling very loved now
Knowing the worst- or perhaps that's tempting fate
Not being the one left behind - ditto
Escaping spiders, mosquitoes, politicians and bankers; football, Radio 1 and dusting

So off we go for fresh air and fun. I will take the laptop and try to wifi

I go off dancing to Mick: this could be the last time, this could be the last time, baby the last time I don't know-O.

Not if I can help it readers

Dining out on it - a foodie forgets

It was twice yesterday, lunch on son Luke and his lovely wife Aleks; tapas and entertainment from Harry and Hannah and dinner, Italian and Saturday night sights with Graham and Ruth, in-laws extraordinaire. Since D-Day its been one long food extravaganza.

Friends and family cramming in twenty or thirty years of expected eating together into .. well lets not speculate how long it might be. Perhaps we should dress up as sprightly septuaginarians or naughty nineties to give the phenomenon some veracity; Whatever the costume I'll always be the roly poly one who never fails to accept a refill and if the opportunity arrives, ogles the waiter.

And while we slather and slurp we forget and that's what adds the extra spice, jus or gremolata to every dish. I could and may try to write a new sort of restaurant guide on this blog; rivalling Giles Coren I could mark places on minutes not thinking about cancer; opportunities to pretend to be following anti-oxidant diet by combining greens with mind blowing other ingredients; not putting cheese in everything and offering copious glasses of red wine; and finally comfortable seats, important when one has a battered groin or doesnt want to be reminded of pain and suffering.

Long may it continue say I and thank you to all my eating companions and my boozing buddies.

More bad behaviour

I smiled nicely at them all and made the odd quip. While I waited I did the Killer Sudoko - deadly grade and did it in 30 mins instead of the 71 they reckoned it would take. Take heed deadly things!I read the Homes and Gardens they had there and gawked at a couple with a £40K budget to do up their bathroom; ended up looking like the loos at Euston in my opinion. Just got started on the Times crossword when they called my name.I'd been looking at the people coming out before me and they all looked a bit on the shattered side especially the relatives; so swallow hard and in we go, big smile.

I say I feel fine when he asks apart from the funny shoulder, the slight cough when I laugh and the raging toothache I had in France. Only the cough is of interest so I dont mention the funny pain in my big toe; don't want him to think I am a nutter. We look at the Xrays and once I have located the bit I am supposed to be looking at I can see about four blobs and I ask how big; biggest 2 and a bit cm he says; and not much bigger than last time. No dramatic change he says. What next then? I ask about surgery and he repeats it wont work because there are too many- so we count them and we reckon about 20 most of them teeny weeny but just waiting to get going it would seem.

So chemo then and I can if I like but he says wait till after Christmas and see what things look like because you are still well (on the outside anyway!) I swallow my English politeness and ask should I see someone else and yes he thinks I should if it makes me feel better; so I am off to see Ian Judson at the Marsden who is the main man I am told.

We talk about NICE and a new drug and push the nastiness away again. Doesnt bother me as long as we can keep doing that again and again and again.

How do I feel? not very different; glad I haven't got a tennis ball sized one yet; glad I am taking some positive action and if I am honest glad I haven't got to face having my chest sawn open!

We live to fight another day and yippee I will have hair for Christmas.

Lets make a deal

Hi Leio, sorry not to use your full name but it is a bit of a mouthful isn't it. Leio does have more vowels than is strictly necessary but then you are a something of a one off aren't you. I wanted a chat because tomorrow I am off to see the doc and he will take pictures of you and see if you have grown. It may be decision time and so I thought I'd try to make you an offer.

You see it strikes me that we are in this together. It really makes no sense whatever for you to polish me off too quickly as lets face it I will take you with me. I know we havent got off to a good start, firstly you came totally unbidden into that vein in my groin; I never sent an invitation you just turned up. I admit you are not the first to have wanted to nestle in that particular part of my anatomy and OK once I knew you were there, I let them rip you out without a by your leave. You might see that as cruel and I understand that. I didn't really know you then you see and you did come as quite a surprise.

So to pay me back you headed for my lungs; a trifle wham bam thank you Mam in my view, but can we call it quits now. If not it will be war you know. Clearly you have the advantage and are more experienced at this than me but as soon as they start all that chemical warfare and sticking knives into you, its going to hurt you as much as it does me and one of us wont live to tell the tale. Bit too Russian Roulette for my liking.

So can you slow down a little? We could come to some agreement if you like, things I've got two of, could you just stick to one of them. Then in the future once you notice me going a bit do-lally and wetting my pants (Ok since the groin incident I dont wear them but I am talking metaphorically here)then by all means move in and be as quick as you like.

You must see the sense in this, gives us both more to hope for.. are you listening Leio; come on give it a whirl.

Jean

The elephant in the room

There he stands in the corner where the big black spiders also lurk. He keeps still and quiet while we plan our meals, laugh with our friends, listen to our music, read our books. Now and then we mention him and we discuss his shape and colour and move on. He comes with us to the restaurants, the parties, the shopping centres, people don't seem to see him.

Sometimes when we plan for next summer, or celebrate a birthday or especially when a cross word is spoken, a why do you always or a why can you never..he lifts his tail or curls his trunk ready to show his presence; but then retreats to the shadows. Tomorrow we will pack him away with the wine we will take back; with the clothes we never wore; he will twitch a little when we wonder, but don't voice maybe, the question about when and how we will return, bald maybe; less than the full complement of lungs maybe.

One day, hopefully a long way off, he will rampage through our world and break the pots and the pictures, devastate our order, upset our children and their children and then turn and mourn, as elephants do, his old companion.

everything I've always wanted- just what the doctor ordered!

So the doctor said go and do everything you have always wanted. I know, I know its a bit grim it means he doesnt think I should wait as my time is running out but hey its one of the nicest things anyone has ever said to me. Usually its no we cant afford it, or you must do this or that and usually this or that is miles away from what I have always wanted to do.

But what do I want to do? I joke that perhaps George Clooney isnt ready for an OAP weighing more than him, with a battered groin and one fat leg but really I am not ready for George and never will be. I think hard and confirm those things I have never wanted to do: bungee jumping, spider stroking, a marathon.

I must be unimaginative as it seems that when the chips are down I only want to do those things I have already done and know I enjoyed and if you really push me hard all I really want to do is be alive and be with my kids, my friends and of course Stewart and it can be as boring as you like. But none of that I must follow doctor's instructions and so in the last six weeks since that day in the doctor's office I have, with Stewart:

Hugged my son, Joe,and his dog and eaten the best apple cake in the world in Utrecht

Travelled on the Eurostar to Lille and dined with Number one son, Sam and his lovely wife Julie, hugged them too

Done Grand Tour of Italy to all the places we love. I have danced alone in front of crowds in St Marks Square as the bands played and felt alive. I have beamed beatifically at the Grand Canal, been stunned by the Guggenheim, sat in awe in front of the Ravenna mosaics, screwed my neck to see the Piera Della Francesca's in Arrezo, the towers in St Gimignagno and the floors in the Duomo in Siena. And my God the food! we have eaten in all of our favourite restaurants and in lots of new finds and been in seventh heaven. We even overcame the battered groin and enjoyed romantic moments on sunny afternoons. We hugged each other a lot.

Then to France to our lovely little house in the Dordogne; bombarded by the two grandsons, Harry aged 4 and Danny who celebrated his first birthday with us; Jess and Tom and four lovely friends. I lived the dream of sun drenched lunches au terrasse everyone piled around our garden table indulging in fantastic French food and wine and in October too!

So I have done what I was told and I have enjoyed every minute; it has been a real bonus and on top of it all everyone is being really nice to me;I think I can truly say I have never been happier.. funny old world eh

The NHS: guilty until proved innocent

Ok lets get this out of the way before we move on. Is the NHS to blame for the fact I now have terminal cancer? Well here are the facts. In early summer 2007 I noticed my right leg was swelling in the heat, more than my left. We were in France in our lovely little house in Perigord. As soon as we got back to the UK I went to my doctor who sent me immediately to have tests for a DVT; none was found but I was signed up to have an abdominal scan which I did a few weeks later; they found a DVT in my groin and I was immediately put on Heparin for 7 days and Warfarin for 6 months initially. At my hospital in Birmingham the regime is that you just go for blood tests once your INR is stabilsed; you do not see a doctor again; in any case the doctor I saw who confirmed the DVT diagnosis was only an SHO not a consultant.
I continued on the Warfarin and my leg continued to grow! I was not prescribed special stockings and was not getting any follow up treatment. I went back to my GP to see if it was normal for my leg to be gettiing worse and he kept a watching brief on it for a few weeks. By November it was still not improving and so he referred me to a cardio-vascular specialist. I went and I saw a senior registrar who said all was Ok except I should be wearing compression stockings; he prescribed some - Grade 1only and told me to come back in 3 months. I did and this time saw a consultant except he hardly saw me; he asked if the stockings were making the leg better and I repled yes a bit; asked if I was well and I said yes Ok and then he left telling me to keep taking the Warfarin and to come back in another 6 months for a Doppler test. It was now Spring again and we left for France.In July I got an insect bite on my fat leg and it started to turn nasty. I went to the French doctor in our tiny village. He sent me immediately to the local hospital for a Doppler scan; I saw a consultant that afternoon; she didnt like the look of what was in my vein and so hospitalised me for 7 days while they did tests. On the 7th day I had an MRI scan which showed that the DVT was not a DVT at all but a tumour. They operated the next day and found it was a leiomyosarcoma; very rare.

I now find I have lung mets and my life is in danger. Do I think the NHS could have done a better job of avoiding my present predicament - of course I do.

One door closes and another opens

Come in he says; how do you feel? fine says I except for my fat leg; mmm says he you will probably have that for the rest of your life and a cloud comes over his eyes or do I just imagine that now. Bad news he says from the scans, he says, seeds in your lungs have grown and more are showing up. Oh no say I for want of anything better; what does it mean what should I say? I've never been able to grow a seed in my life apart from the babies of course. He talks about evidence and sounds hopeless about treatments and I start to think is this really me and is it really happening; how should I behave? I ask about prognosis recognising its a big word but catch the eye of Stewart as I do so and he has the look of a dying man. There is talk of evidence and averages and it doesnt sink in that he is telling me I might be dead in 1 year's time or sooner; I do the maths and think I will opt for the upper end of the averages thank you and then he tells me to go off and do everything I have ever wanted to while I feel well and I cheer up; something to work on; another door opening as long, that is, I dont look at Stewart.