Thursday, December 31, 2009

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

Monday, December 21, 2009

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.

Monday, December 14, 2009

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!

Thursday, December 10, 2009

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!


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.

Tuesday, December 8, 2009


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

Monday, December 7, 2009

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

Saturday, December 5, 2009

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.

Friday, December 4, 2009

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.

Wednesday, December 2, 2009

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.

Tuesday, December 1, 2009

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.