Sunday, January 31, 2010


It's absolutely beautiful here; beautiful but deadly. It snowed yesterday all day, about four inches in all and last night there was a deep frost so at present we are living on top of a ski jump or a toboggan run. We travelled here in our camper van, an extravagance bought in April when I retired and before we got the dreaded lung news. It seemed like a good idea to bring it as it's good and comfy for me and my fat leg, but it has been a disaster. First off we couldn't move off from where we had parked it on the first day as it was all mud and the wheels just span around; we then struggled to turn it round to park it going downhill whenever we took it out as our little hamlet doesn't have mod cons like mud free turning circles. We (I say "we", I in fact wouldn't drive it for a million pounds) bashed it into a wall and broke the light casing a couple of days ago which is merde as we may want to sell it to pay for the next lot of Rolle treatment.

So the ice adds another set of problems and today we were due to go off to see our French family, parents and brothers of Julie married to Sam, our eldest. S and J are visting too as it's Julie's eldest brother, Thibault's 30th. The family live about an hour away near Bergerac on a farm (see picture) that rears ducks and makes fois gras, confit de canard, magret etc etc; c'est un tres bonne marriage! As I don't know how to say cancer in French - or much else medical, I was looking forward to a day of escape and superb proper home-cooked French food.

There is no way can we get the camper van down and certainly not back up the slope in our hamlet and turn it round afterwards in ravishingly beautiful, shiny, crackly ice. But help is at hand and lovely Sam and Julie have just called and are going to brave the elements and fetch us and we will go to the ball and no doubt come back looking like a couple of pumpkins.

Friday, January 29, 2010

Money, money, money

My friend and old work colleague John, who is a health economist, commented on my post called French lessons about the differences between the French and UK health systems, pointing out that France spends 11.1% of gross domestic product on health, public and private and the UK spends only 8.something. I did try to reply to his comment but my computer wouldn't play ball so I thought I would start a bit of a discussion about it. Firstly I wondered if this included Over the Counter (OTC) medicines because the French spend une bombe in the Pharmacie. Apologies to my very belle fille, Julie, but they are a nation of hypochondriacs on the whole. Witness the family cold we all had a few weeks ago, Sam started it and reluctantly took a few paracetamols and sniffed up the nose spray I had been given in the German hospital. I got it and as I had just had major lung surgery and was half dead I did take some antibiotics and some decongestant medicine. Apparently when Julie got it she went off to the doctor or medecin and came back with armfuls of medication enough to stock her own Pharmacie. She got better quicker though.

Also I observe that the French have loads more doctors than we do but I have heard that they are paid much less. They certainly seem to have less managers and admin staff as do Germany in my limited experience. So it seems to me that they spend more and that more of it goes on actual patient care albeit lots on medicines we wouldn't always deem necessary. We on the other hand seem to spend millions on managers who we pay to keep patients' costs down and OK I know I spent years defending this on stage, screen and radio but I have had my "the emperor's got no clothes on" moment or my conversion on the road to the Dordogne and Dresden.

And with all of these admin staff we still keep people waiting for hours. Witness Jess and Danny waiting 2 and a half hours to get his dressing changed and also my fellow blogger and fellow sarcoma victim, Dot, who had to wait four hours for her bed to be made ready for her so she could start on her new chemo regime. They knew she was coming presumably! Both in France and in Germany even though I turned up unexpectedly to both hospitals, I got to my bed within 15 minutes.

So let the debate begin and John put me right on my, no doubt, ignorant rantings just like you used to.

Thursday, January 28, 2010

The census

The census lady came the other day; she followed hard on the men from Darty delivering our new washing machine and earlier we had had the plumber checking on our temperamental heating. This makes for a very exciting day in Maumont, a tiny hamlet with 12 houses and nothing else apart from divine views, a few sheep, some splendid cows and, before Christmas at least, ducks.

Being counted makes us feel official, although the form is a bit complicated and all in French of course. Whenever I get things like this to fill in I feel like making them more interesting by adding a few juicy details or attempts at humour. As many of you readers don't know me that well it might help if I gave a few examples of what I might put if I could...

Title: Mrs but really I prefer not to use one, don't like Ms and was too lazy to ever be Dr or Prof. I am Mom or Nanny Jean when a title is really required.

Forename: Jean but have to change that to Jeanne in France otherwise they think I'm a chap. Also known as Jeanie to some, Fiddly tid shortened to Fid to my Dad when he was alive and, sorry, Silly fat f***er to my husband as a term of endearment.

Surname: Trainor but this is really my husband's name. I was Mackay but that was my Dad's name; my Mom's name was Jones but that was her Dad's name - you get my drift.

Sex: Yes please

Address: Birmingham, UK and Maumont, Hautefort, France. Birmingham - large tunnel back, just Victorian, three story house. Maumont - one down, two up stone Perigourdian cottage with barn, of indeterminate age but old.

Date of birth: 10 April 1949 - It was Easter Sunday, it was in hospital and I just count as being a bulge baby. I was an accident

Marital status: Married to Stewart for 41 years, nearly 42. I was 18, he was 24. We are Derby and Joan now but have had a few roller coaster rides over the last four decades. Always wobbled off together thankfully.

Dependents: Officially none but there has been Sam, now married to Julie and living in France, Dr Sam actually and he teaches at Lille University; Joe, IT expert extraordinaire lives in Amsterdam with Scoobie his dependent dog; Luke just married to Aleks with two teenage step-children, Hannah and Chelsea, he is training to be a drugs counsellor and he lives in Birmingham as does Jess, married to Tom with Harry aged 4 and Danny aged 1, she has just started working as a business manager for a domestic abuse service. We are hoping to become dependent on them one day.

Education: Started at 4 over the road from where we lived, got moved to another school at 8. I wasn't a neat writer so I didn't shine. Passed for grammar school at 11 but not the posh one, came about 20th in everything throughout my time there but then, due to what must have been a clerical mistake, got three Grade A A levels. Went to Birmingham university after I got married so missed all the social life and probably an awful lot of trouble. Did Medieval and Modern History and got a 2:1 and then went on to do a Post Grad in Medieval Society and Culture, passed the exams but then got pregnant before I finished the thesis so became a ma not a M.A.

Occupation: Retired thank goodness. In this order have been: sweet shop assistant;sexually abused office worker; urban studies research assistant; admin officer for RoSPA, Business Manager, Deputy Director and Acting Chief Executive for NHS Confederation, the CBI of the NHS; Partner, owner and Managing Director of my own company, Health Links, an events organiser for the health service. Was also Chair, (not Chairman- prefer to be a piece of furniture rather than a proxy male)of an NHS Trust and Vice-Chair of a PCT(Primary Care Trust).

Health: they never ask this but just in case: crap - cancer; prognosis - not sure I will see the 2012 Olympics

Politics: Don't ask this either, but very disappointed and let down Labour

Religion: None unless atheism counts

Ethnicity: White but really a sort of pinky beige, taupe maybe, certainly not the colour of my compression stocking. Brummy through and through with hint of Scottish about two generations ago.

That's it and hope I get to fill in the next one in five years time.

Wednesday, January 27, 2010

Only here for the beer

Apparently some chap in Canada has just been had up for professional misconduct for selling some dodgy alternative cancer treatments for 10,000 dollars a year (nice work if you can get it!) his company allegedly claimed that "it’s more therapeutic to drink cold beer than to do chemotherapy, radiation and surgery". Unfortunately I can't stand beer either cold or warm and would marginally prefer radiotherapy and surgery. I can't give an opinion about chemotherapy yet but I suppose beer doesn't make your hair fall out.

If however you base your therapeutic decisions on evidence as our doctors are always recommending if I think about my friends and family, the big beer drinkers are in fact mostly bald or at least thinning on top and none of them have cancer! My dad for example: bald from the age of 21 and lover of the strongest home brew on record, drank from 11 in the morning till 11 at night every day, died at 87 not of cancer; my brother thinning on top is following in the family beer swilling tradition, lovely cancer free blood. Of my sons the baldest is the biggest drinker and amongst our friends, sorry mates but Chris and Dick both have wide partings and both love a beer or several, no cancer there either.

I can of course think of beer lovers with lovely thick hair and you probably know a few with cancer but as one who has stood out alone amongst her nearest and dearest as a scorner of ale and a pouter at porter and as one who to date has kept her refulgent locks I am wondering if this has been my big mistake.

I will give the chemo a try the week after next but if it fails to impress maybe I will try the odd shandy and , of course, try not to cry in my beer!

Monday, January 25, 2010

French lessons again

Every night for the past five nights I have been crawling up the walls; this is not an attempt to bash down the cobwebs and those antique very thin ghostly spiders that inhabit old French stone houses, but it's the pain from my shoulder, or shoulder blade should I say that is metaphorically driving me up the wall. It started about four months ago with a strange deep itch and being even more fidgety in bed than I usually am when sitting up trying to read. It's nagged away since then and gradually got worse but then this week, sacre bleu it's like toothache, earache and labour pains all rolled up into one.

I had told my oncologist when it was just niggling but he shrugged it off, lucky him to be able to shrug! He says it's my lungs that matter which is a fair point but I'd rather have the full picture and anyway now it seems my shoulder blade is living up to its name, spearing me when I am trying to have a lovely chilled out time in front of my log fire.

So this morning we went unannounced, sans rendez-vous, to Dr Fraize in our nearest village, Hautefort. He gave us an appointment for 10, listened to the whole story, he knew the first chapter as it was he who had insisted I went to hospital right at the beginning when the UK docs were shrugging my groin off and doing bugger all about it. He examined my cote as they call it here and got immediately onto the blower to the hospital in Perigueux where they had discovered leio and pulled him out in his vein. He spoke to one of the senior oncology radiologist doctors and asked him to analyse the CT scan I happened to have with me - the German one- to see if anything was showing up on my shoulder blade, if not he was to x-ray me to see if the bones were all OK. I could go between 2 and 6 this afternoon; again with no rendez-vous. Off we went, it's a lovely ride, 40 minutes through ravishing countryside, to the MRI dept, I handed in my disc, we sat for ten minutes in which time three people came into have thier scans, each was taken immediately into the changing room and from there into the scan rooms, no waiting at all. After 10 minutes the Doctor came out and said he could see nothing on the scan, so I must have an x-ray, he took me upstairs handed me over immediately to a radiographer who snapped me three times and then took me and the x-rays back to the Doctor. After another 5 minutes he took us into a consultation room and said he could find nothing on the bone, no evidence of bone mets that is.

The whole thing took less than an hour, Ok I would have preferred an MRI scan and will ask for one in Birmingham while I am having the chemo, but given that I emerged out of the blue into the French system this morning and by this afternoon had been given pain killers that work, been seen by a specialist, looked at properly and had at least one nightmare scenario discounted, I think we can safely say that France has scored again!

The whole system seems so much more accessible and open-minded; it's better organised for sure. As I arrived home I had a call from Jess, she had taken Danny to have his dressing changed in Birmingham, she called me after waiting for two and a half hours with him in a waiting room full of other little kids and their families. She had complained and asked how many children were in front of Danny in the queue, no-one could tell her. Where are we going wrong!

Friday, January 22, 2010

Cold shoulder

Sorry readers my shoulder is giving me terrible gyp today and I can't type much. It's been niggling away for months now, I have mentioned it to the docs but they have done their usual taking no notice trick. I cannot help but worry that leio has settled in my muscle or nestled around a nerve so I shall keep nagging for a scan. I may even play my ace and go and see our French doctor who started the whole process of discovery 18 months ago and ask for an MRI here; they seem to be able to respond so much more quickly and for some reason I can't understand they only charge about 50euros per tunnel experience. At least I would know one way or the other and we would all know what challenges the chemo has to take on alongside the lung blobs; if any.

Truffling off

In one of my earliest postings I threatened to write a regular restaurant review from the perspective of a bon viveur with cancer; marking on ability to be distracted from said cancer; opportunity to pretend you are sticking to the anti-oxidant, no red meat, no dairy loads of fruit and veg diet; and the comfort of the seats for those of us with battered groins. Shoulder is feeling better today thanks to co-codomol so here we go with the first review

La Truffe, Sorges, Dordogne, France

There was a time in my youth when a thing called a truffle was the height of sophistication. You only had them at Christmas and my Mom's favourite were rum truffles. Generally they were a bit disappointing despite the poshness, covered in plastic looking chocolate dragees and tasting worryingly like cast iron buckets - and yes I have tasted a cast iron bucket thank you. This was the early sixties, when Delia was still just a waitress and when we only used olive oil on bits of cotton wool to stop earache - except it didn't - and thought that Vesta Chicken Curry was the pinnacle of exotic.

I am now all grown up and we have been transformed by said Delia and Rick and Nigel and even the dreaded Gordon. I know what to do with olive oil and how to make a proper curry; I also know that a truffle is a turdy looking thing that pigs root up in this region of France and other foreign parts. They do look a bit like Mom's rum truffles but whereas those were just about affordable for a special treat Mom's eyes would have watered (a miracle as her eyes were dried up by a drug cock-up in the
70s) at the price of the real McCoy.

All of this was milling around in my head yesterday when we visited one of our favourite restaurants in Perigord where we have our French maison secondaire, La Truffe in Sorges which claims alongside hundreds of other French petite villes to be the Truffle capital of France. It has a truffle museum and a weekly truffle market and not much else apart of course from La Truffe. La Truffe is a Logis de France with pretty standard bedrooms and a Michelin Bib Gourmand Restaurant. It sits on the busy N21 that goes from Limoges to Perigueux, the traffic whizzes by but some travellers stop at midi to eat the four course 10.50 euro Menu de Jour. This means two things: the place is usually pretty full and it is open in the dead months of January and February. The locals around here go into semi-hibernation at this time of year, they cocoon themselves behind their shutters and all but a few of the restaurants and cafes are closed and miserable looking.

The restaurant is nicely done, they had a refurb a year or so ago and the 80s yellow and blue decor was replaced by more subtle greys and browns; the linen is good and thick, the chairs are wide and well padded, thank you says my groin and the pictures and artifacts are a step above the usual brocante finds and paint by numbers art that adorn many of the local hostelries. The Maitre D was in fact a Maitresse and had a cheeky wink and knowing look.

Alongside the Guillaume pas des amis (Billy no-mates) office workers and travelling salespeople having their 10.50 cafe compris lunch, and very nice it looked too, there are always plenty of tables filled with those who have made a detour in order to get the full La Truffe experience, including on a fairly regular basis, us. Outside the 10.50 midi menu the menus range from 18 right up to 100 euros. The latter is for the full truffle menu where every course is truffle based. I have never seen anyone having it so can't say if the dessert resembles Mom's favourite chocs in any way. We opted for the 44 euros for 5 courses menu. This was partly because it offered non-red meat stuff I fancied and partly because all of our worries about living on a pension go out of the fenetre as soon as we set foot in the place. We deserve to treat ourselves says Stewart and he is right.

So we had good ant-oxidant pumpkin soup to start and I followed that with a dish of perfectly cooked scallops topped with the signature truffles. There were five of these placed nicely around loads of free radical chasing salad leaves and hey ho five spears of cancer busting asparagus. There was a slice of potato under each scallop which I could have done without but then realised these went very nicely with the dressing which had still more truffles shaved into it. Stewart went for the truffle omelette and voted it excellent, the French don't seem to have caught onto our knack of producing pale looking eggs and whisking them into dry leathery concoctions, we have been asked in little french bistros how we would like our omelettes cooked, very soft and runny inside or just soft and runny. This one was perfection, golden in colour with little specks of truffle and oozing delicious eggy juices.

Because we had splashed out we then had a lovely little sorbet swimming in something very boozy to clean our palate and with our nice clean mouths we fell upon our next course. Mine looked anything but regulation sick person's fare but it was duck breast so although it looked quite red, I like it rare, it didn't have fur and wasn't a mammal. Neither was the fried fois gras, crisp on the outside and meltingly soft on the inside, that sat atop the juicy duck, mamallian more ambrosian I would say. The sauce had more truffles - hope they have cancer chasing qualities - and the only other adornment was a layered potato cake which was a little over-cooked if I am being brutally restaurant reviewish. It was all rich and robust and wonderful for a beef deprived, cancer riddled foodie.

Stewart had a big juicy veal steak (apologies here to all veggies that is veal and fois gras mentioned in one review; you can stop reading now if it helps)that his knife went through as if it were butter swimming in morel sauce and with lovely buttery tagliatelle. We scoffed it all down and wiped our plates clean with the proper french bread and we would have picked said plates up and licked them if we had been back in Brum in the 60s.

They offered us cheese and oh how hard it was to say no, the trolley was full of wonders; when we had been here in the summer with our friends Celia and Richard from California (well Richard is from Wales but they live in California) Celia had asked to have a bit of every one and they were delighted to give it to her. But we said no and felt very superior, well sick really but you have to put a good face on things.

That did mean we had plenty of room for pud and I had chosen a fruity one, lovely caremelised clementines with some orangey stuff and a clementine stuffed with clementine sorbet. Oh my darling, oh my darling it was lovely. Stewart's nutty macaroon stuffed with coffee cream and ice cream accompanied by a chocolatey thing in a glass was another success. We had washed all of this down with only a half bottle of Pechermant, the local red, but I had the lion's share because it is good for me and because I wasn't doing the driving.

We finished off with a kill all cancers cup of green tea and left after all the workers and the lunchtime lovers, pensioners we, busy doing nothing.

So my marks out of 10

Comfortable seats - 9 (ten would have given me a footstool and a cushion for my dodgy shoulder)

Anti-oxidant opportunities - 8 and we had to pay the price

Distraction from cancer thoughts - 7 but this is hardly fair as my shoulder was hurting and kept the creeping leio in mind

Cost 120 euros all in and we will have to go for the 10.50 blow out next time to make up for it

Wednesday, January 20, 2010

Hair today and gone tomorrow

I think I worried everyone with my Mrs Rochester lapse yesterday; sorry folks. I am still the same old cheerful me and I will make the best of a bad job - all that sleep, can't wait, savings on haircuts; no need to shave under my arms or pluck the mole on my neck which I am obsessed about; bring it on.

I have been thinking about hats; I even tried a few on in John Lewis the other day. The trouble is that I look a sight in every one. In the old days when I had just the one chin and a nice clear jaw line I used to look good in anything I stuck on my head, just as my daughter does now. But now I look like a slug or a big fat earthworm every time I try a hat on. It reminds me of my Mom and my Aunty Glad, she wasn't a real aunt but a lady from over the road. She had a big face but she loved to try on hats. She and my Mom would make special trips to C & A just so she could indulge this habit and so they could both end up paralytic with laughter, not just paralytic, my Mom used to wet herself regularly. So next time I venture to John Lewis I will take a mad friend and a clean pair of trousers to change into.

But I think it will have to be a scarf, trouble is I have never been one of those women who can just drape a piece of cloth around themselves and look stunning. I have practised and I think I am going to go for a toned down version of those lovely turbans that African women wear ie I will tie the scarf round the back and then bring it up on top of my head with a floppy bow. It doesnt look bad especially if I avoid the wormy look and push the front back and reveal more of my brow; I am hoping to keep my eyebrows as I have ordered some magic stuff. Its all quite an adventure really.

I think I will clip my head before I start as well; give it a number 3 or 4 all over; it's not much longer than that anyway. It's ironic as I have always moaned at my boys when they clip their hair; each of them have been through the clipping down to No 1 phase and it's not a good look in my view; I prefer them with their fluffy locks like when they were kids but I get an Oh Mom what would you know response if I ever voice this.

And the really exciting bit is that it may grow back curly, I may not be greying anymore; it might be black or completely white. This thing will make a new woman of me yet. Not Mrs Rochester of course but maybe a demure Jane Eyre; some hope!

Tuesday, January 19, 2010

Chemo blues

I don't want it, I am not brave about it. It feels like the beginning of the end or the end of the beginning, same difference. I have been well and I will be sick; I have looked the same and I will look pale and bald. It is poison, it doesn't work well for leiomyosarcoma. I will have to go into hospital every three weeks and it will be vile. Sickening, weakening, forgetting, raving, heart stiffening. Mrs Rochester is escaping and getting through the barriers; she will be prowling the hospital corridors and screaming in the dark.

It's a change I don't want any more than I want cancer, sarcoma, soft tissue mayhem; they go together like a horse and carriage, love and marriage. No going back; it has to be done and Grace Poole will calm me down no doubt; and it will be a brave smile for the world and God knows what to follow.

To lighten the mood a little ditty:

Bugger off
Itchy cough

Wait till I'm older
Frozen shoulder

On your bike
Take a hike
Off you go
Key ee mo
Ley ee oh

Monday, January 18, 2010

Danny's finger

The sun has forced me to hoover and mop today; dust and cobwebs galore showing up. The glass doors too are covered in tiny hand prints belonging to Harry and Danny who visited last time we were here. This makes me shudder not because I have to get the window cleaning stuff out but because Danny's hand very nearly wasn't how it appears on my filthy windows.

On Friday they came to see us before we left for France. I opened the door and in he marched, he is 14 months and has been walking for four of those months; he is fast on his pins now even though he still has a straight legged frogmarch gait. Harry hung back and I did with him. We heard a crash, Danny had lifted a heavy glass vase, fallen on it as it broke and there was blood everywhere. It was gushing from his hand and Jess and Tom rushed him off to hospital. It turned out that he had severed an artery, two tendons and two nerves in his little finger. He was operated on the next day for three hours and they mended it. Luckily the duty plastic surgeon for that day was a world renowned expert on hands.

It makes me think again how close we are to disaster all of the time; I had no idea we had arteries in our fingers, I must have come close to cutting mine a million times as I cut myself nearly every time I chop anything. Anyway at the moment Danny would leave boxing glove shaped smears on my windows as I am told he has a large dressing which he keeps offering up for kisses.

We are hiding all the vases and the blood is cleared away so we will avoid similar disasters we hope; and let's hope too that all other disasters in our family are put on hold. Let Danny's finger be enough for now.

Sunday, January 17, 2010

Free and radical

We've arrived and I am sitting writing this in front of the wood burning stove replete with guinea fowl cooked in red wine and apples, swilled down with more red wine.

I am so grateful that red wine is packed with anti-oxidants and so I have an excuse to drink copious amounts of it. I have also sent for loads of anti-oxidant supplements, one is made from white grapes from this very region of France and so I am wondering why I don't just cut out the middle man and drink loads of white as well.

I am trying to defeat the free radicals that are rushing around my body but frankly being free and radical both seem attractive traits to me and so I am not sure my heart is in it. Will drinking lots of red wine banish my radical side and make me conservative and closeted? In my experience it does exactly the opposite and I lose all inhibitions so perhaps the wine is sweating the free radicals out and transforming them into my post toping rantings.

If only we could see inside ourselves and play war games with the nasty little cancer cells; here take this slug of Rioja and see how you like it; or just go down that blood vessel and you will meet a load of acai berries or green tea leaves; nah nah na na na - that'll show you.

And as for the chemo that'll blast them good and proper we hope; the cancer and apparently all my healthy cells along with it. Let's face it, you can't get more radical than that!

Friday, January 15, 2010

The appointment

Today was the day of my appointment with my oncologist, the Birmingham one, to discuss next steps. I had sent him the report from Dresden and the CT scans etc but as expected he had not undergone any conversion on the road to Damascus or even Druids Heath. He repeated that there was no evidence that people with lots of mets who have surgery have any benefits, ie live longer. We questioned his evidence as ever and went round in a few circles.

We discussed the x-ray which showed a few holes in my right lung but no mets (a CT would have found a few)and that the biggest met in the left lung had only grown slightly and was now 1.3cm. He asked about potential for Dresden treatment on left lung and I said that would depend on recovery of right one and whether chemo could shrink or do away with the few left in that lung. He said as I had embarked on this course of treatment then we should work along those lines, which was gratifying.

So we will start chemo wk beg 8 Feb, it will be the combination of the two classic ones for this condition, known to aficionados as Dox/Ifos. He says it works better when you use both so I have to trust him. I will have to go into hospital for two days every three weeks for four months and will feel progressively worse as the time goes by; I can plan treats for the times in between which I am already working on. I will lose my hair, become anaemic and generally be a poor dear thing. Or I may just sail through, lets hope its the latter.

So we are off tomorrow morning first thing in our snow covered camper van; going over to our little house for two weeks of French therapy, anti-oxidants in form of Bergerac and Pechermant; loads of good food and heavenly tranquility. The calm before the chemical storm.

Wednesday, January 13, 2010


It's at it again round by us and other couple of inches have fallen over the hard baked ice from last night. This and the tail end of my cold has meant that I am a virtual prisoner in my own house and do you know what - I love it. Me and Stewart swathed in woollies tucking into cock a leekie (no I am not that well - just the soup!) or delicious veloute of parsnips and curry. Nestling by the radiators reading, doing crosswords; having no pressure whatsoever to get up and do anything. My most energetic action of the day is to breathe into my spirometer which I can now get to pre-op levels and I might just run up and down stairs a few times to improve my breathing. Apart from that cosiness reigns. I have to admit to a vicious sort of interest in the poor devils stuck in the snow that keep appearing on the news every evening. It's that sort of glad it's not me but look how awful it all is sort of feeling that people probably have about me and cancer.

Snow permitting, on Friday I have to see my oncologist for next step discussions. He of course never approved of the Dresden venture, so it's going to be interesting. I suspect we will agree to start a chemo regime in a couple of weeks or so, when the Cold has hopefully disappeared completely. If so we will be off to France pronto while we can, to enjoy la neige if it's got there, to light our wood stove and get cosy French style. Not even any telly to distract us from doing nothing there.

Paix perfect piax before the chemical warfare begins.

Monday, January 11, 2010


There is a relativity in death I suppose. I face my own with a little more certainty than I did this time last year and that pretty tough on me and mine but I know there are people following this blog who have suffered beyond the limits that most of us can imagine. Mostly it's about losing a child and that is a horror none of us wish to ever have to go through. I write this because my good friend Rudy is facing a dreadful anniversary this week; his 17 year old daughter, Anna, was beaten into a coma she didn't recover from on 13 Jan 2009. It's so awful all we want to do is scream along with him; another friend and reader has just seen the 5th anniversary pass of the tsunami that swept away his beautiful daughter. Another had a baby that breathed too soon and another a lovely son who fell victim to leukaemia. All, I know, would help Rudy if they could just as they help me by sending words of support and by being my friend; all would say that you learn to smile again and mean it.

Kathryn says that James her son only feels a membrane away from her and I like that thought. But she also said life is such an arse at times and she is dead right.

Friday, January 8, 2010

LIberty at last

I think I may be developing an underwear fixation or in fact the opposite. My first operation to banish leio was in my groin and got me out of my knickers for good; I've tried a few times to re-establish sloggis into my wardrobe but to no avail. This time getting leio out of one of my lungs seems to be doing the same thing for my bra. I have a lovely neat scar about 8 inches long that runs exactly where that wiry bit goes(I have to wear the industrial variety, for hoisting properties rather than titillation). I did try it on once since the operation but quickly had to do that shuffling out of the damned thing without taking your top off manoeuvre - I was eating dinner with the family at the time; good job they are used to my eccentricities and Sam in fact had to remind me how to do it, he is a man of many talents!

I would like to say that its saving me a fortune in buying pretty flimsies but I think my total lifelong budget for underwear probably hasn't exceeded the £100 mark yet. Laundry bills? well yes its good not having to wash my drawers daily but then I do have to wash my trousers more often.

I worry about what my mother would think if she were alive especially in this weather; she most definitely was fixated on underwear and it's health giving properties. She would have approved of my lovely thick compression stocking (see yesterday's blog)but I fear, if she were here, knowing that I was braless, she would force me back into that most hated of garments from my childhood, the liberty bodice. Only those women of a certain age will remember these dreadful contraptions; they were put over your vest and had a million little buttons that had to be fastened while you wriggled and jiggled. They often also had a pocket but then so did your school knickers; how you were supposed to take anything out of these pockets while retaining your modesty I do not remember. Anyway no pockets for me now and a real life of liberty without lingerie.

Wednesday, January 6, 2010

stocking fillers

My fellow leiomyosarcoma sufferer and blogger, Karen who is currently on a cruise wrote a few days ago about wearing flesh coloured compression stockings with shorts on her swanky deck. I sympathise, I too have been that woman (the stockings and shorts bit not the cruise...yet!) and let me tell you no-one has flesh the colour of these stockings and even Norah Batty would have shied away from their elastic proclivities. It did however bring to mind a funny incident in Dresden.

After the operation, they had given me surgical stockings, a nice white colour not pretending to be anyone's flesh unless ghosts have flesh and I don't think they do. But to be honest they were far too floppy and comfortable for my high maintenance legs which had begun to bloat up to the size of tree trunks. So I fished out the Jobst, top strength, aforementioned flesh coloured ones and attempted to put them on. It's my right leg that needs them most and my right lung that had just had major surgery; at the best of times I count putting on my stocking equal to the exercise you get say climbing Everest or completing a triathlon; it ain't easy. With drains and stitches and a stretched ribcage it was nigh on impossible.

The sensible thing would have been to call a nurse but Stewart was there so I engaged him in the process. I knew it was doomed to failure, I had once tried to get him to take the damn things off and it beat him. Anyway we set ourselves up with our backs to the door, me sitting on a chair and him kneeling in front of me. I instructed him in rolling the garment up and hooking it over my toes, quick pull to the heel; but no it all stuck and he was grunting and groaning and pulling and pushing and I was thrusting myself back on the chair to give him some purchase; shouting out yes that's right or no a little harder; when of course one of the nurses appeared at the door. She gaped, apologised and made a quick exit.

I can only imagine what it was she thought we were up to but with or without stocking it doesn't seem a bad idea... sorry readers the cold is clearly improving.

Tuesday, January 5, 2010

Twelfth Night

Every year there is a dispute in our house about when we should take the decorations down; it must be on - or is it by - twelfth night and is that 5 or 6 Jan? Sam and I counted back this year and decided it was the eve of 6 Jan so in fact 5 Jan. Anyway Stewart failed to send me 12 drummers drumming to help out so I left my sick bed today to drag down all of the baubles and bunting. Clearly no-one told our Nordic Pine non-shed Christmas tree what non-shed means as when I headed back to bed Stewart was clearing up a carpet of pine needles stretching from the front to the back of the house.

Every year I feel sad when it's all gone but thankfully the cold was making me feel too wretched to wonder if I will be getting the decorations down again next Christmas and if so what I will have been through on the way. Frankly if any of it is worse that this cold I am going to turn into a moaning old bag. OK, OK a bigger moaning old bag.

It's snowing outside and it looks beautiful from my comfy old bed; glad I am not out in it mind you, so at last I have found something positive to say about all the snot and the phlegm. And hey we have the decorations down so no bad luck on the horizon for us; that is if we have the date right.

Monday, January 4, 2010

Love and infection

Been in bed for last couple of days fighting the big C - not the Cancer this time but an absolutely dreadful Cold that has come at the worst possible time. We had a smashing New Year's Eve and the picture above shows me and mine just before we sat down to eat. Quite daunting that so many people emerged from us or got hooked up to us after that first encounter at the bus stop 45 years ago. What you can't see are the bugs dancing around with the family smiles making a bee line for me, seated in middle; Harry- grumpy little one on back row and Julie, wife of Sam - originator of cold - second from rt standing. So that by the weekend we were all streaming and spreading more bugs to our friends and family.

I have discovered something else about love and pain. Everybody always hugs you on the right side and often adds a little beating of the shoulder blade to show depth of affection. Lovely but when you have just had the Rolle treatment it can be more breathtaking than heretofore. So the midnight moment was not coloured by worries about what 2010 might have in store for us all but with more scar bashing and sloppy bug spreading kisses.

Don't stop however friends and family hugs a plenty in 2010 please even if accompanied by bugs and bruises.

Friday, January 1, 2010

Full report of Dr Rolle Laser treatment

The Krankenhaus in Coswig is based on an old recuperation hospital for TB patients etc, situated in the forests in Upper Saxony. It is now a modern hospital specialising in pneomo-thorax conditions. It carries out very high tech surgery but its wards retain something of the feeling of a sanitorium or recovery clinic. They are two bed rooms with a few one-bed private rooms. I had one of the latter at 39 euros a day as it was important for Stewart to be able to be with me for as long as possible and I would not have made a good companion for another patient as I can only speak about ten words of German and I snore.

For me the arrival was the only time I felt lost as I had only corresponded with Dr Rolle by email. The best person to talk to before you come to make the admin arrangements is Frau Meissner and she speaks very good English. I did this but on arrival at reception they were not expecting me and didn’t speak much English so I asked for Frau Meissner and was told where to find her; she was extremely helpful. Alternatively Frau Monika Kleiber who works in the admin office in the reception speaks quite good English and is lovely. You have to go to register with her or one of the other staff before they take you to the ward. This includes filling in a lot of forms but they are translated into English.

The rooms are plain but attractive and spotlessly clean; they have a shower, toilet etc. The bed is adjustable for sitting up and has a duvet not blankets etc as in the UK. In the morning if you are fit you are asked to make the bed yourself. It is easy as you just shake your duvet and fold it in half. They do not change the beds daily – maybe weekly. In the mornings and evenings you are asked to take your own temperature and record it; they take your blood pressure and pulse once a day, bring your tablets etc, wish you good night and that is it at the pre-op stage. At night the rooms are dark- you can wind down blinds – and it is very quiet unlike in the UK where lights flash all night and staff go about their business. You are woken at 6.45am and you can dress in ordinary clothes etc.

Outside the rooms on the ward again it is clean and spacious; the doors are all about 1.5 times as wide as in UK. The colour scheme is bright and restful. There is a tea making room with a microwave and an attractive sitting room with high quality furniture, - not a bit hospitally - grouped around coffee tables, and there is a bookshelf and games. It all has an almost folksy feel and tries hard not to be too clinical. I was there at Christmas which helped as there were the usual very classy German decorations. It snowed too!

There is an emphasis on improving lung capacity etc so for me there are three contraptions I have to use regularly; in my room a spirometer; up the hall a machine for breathing in oxygen every hour and downstairs cubicles for breathing in salt fumes twice a day. There is a gym for light exercises which we should attend daily for half an hour.

All of the CTs, xrays and lung function testing are on the ground floor which retains the spacious, colourful non-clinical feel and has very good art on the walls which you can buy so I presume they are exhibitions that change regularly. Your go down by yourself, knock on the door you are supposed to be going to and then wait for just a few minutes. Inside the equipment looks top of the range and all is new and modern. For my CT scan they did it with and without an infusion to show contrasts. I had that done in France too but never in UK. The technicians spoke English or read from a translated sheet sometimes with hilarious consequences.

The food: you are asked to choose from a menu each day. German food itself is an acquired taste and I don’t know it well so cannot judge how the hospital food compared with German home cooking. It was not brilliant and not very healthy but certainly copious amounts and perfectly edible. A large emphasis on meat and sliced sausage. The cucumber and bean picked salad was good. The main meal is at lunchtime and served very early at about 11.30. The kitchen has a microwave so my husband could warm up meals and eat at the same time as me. You can go in there at anytime and make tea, coffee etc.

The nurses: there seem to be two grades of nurses; the ones you see most of are dressed in blue, sometimes with a green flash. They take your meal orders, bring it, measure your blood pressure and prepare you for your operation. Mostly they were male. On my ward there was one called Andreas who spoke excellent English and became “our man” he told us he wanted to become a doctor. The other, Stevan, spoke less English but was charm itself. These nurses went off duty after lunch. The nurses in white were all female and called Schwester, Sister; they were the ones who handed out the medicine and fixed canellas etc. You don’t see much of them pre-operatively; I think two were on duty per day on our 36 bed ward.

The physios: these are very important people and run all of the breathing machines, gym exercises, post operative breathing recovery etc. They seem clued up on the whole process. The one I saw most regularly is Cindy who speaks excellent English. She tells me that its because her brother-in-law is American; my daughter-in-law is French but my French is still woefully inadequate; a different outlook clearly.

The doctors: there are about four that seem to be about on weekdays; they dress all in white like angels; they come in mob handed each morning and just ask how you are but are willing to answer any questions; there is a female doctor who seems to lead them and she is very clued up. She referred to Professor Rolle for any decisions however. He visited me regularly pre-operatvely to discuss the scan and the operation he was happy to answer any questions and to discuss the whole procedure, the German as opposed to the UK system etc. He let me go out to Dresden two days before the op and recommended the sights. He is not aloof in anyway and talks about everyday things happily. I had to sign a paper giving him 4000 of my 11,000 euros but however long I stay and however many mets he finds and zaps it is the same price. He is passionate about his procedure and what it can do for people. They have to write down on a form that they give you exactly what they are going to do, what might go wrong and what they will do if it does. You also sign up for the removal of other things if necessary -in my case lymph node removal if the pathology calls for it. We both sign the form. As I have one quite large lesion it may be necessary to remove a lobe.

The anaesthetist, Jens, is another expert who came to see me two days before the op. He explains the whole anaesthetic procedure in perhaps too much detail! and again writes it down on a form and we both sign it. He laughs and jokes and is very approachable and friendly too. I have to sign a form for 1200 euros for him and that also it turns out comes out of the 11,000 euros. I will have high spine epidural as well as general anaesthetic so that I have no post-operative pain and can do lung exercises and not get pneumonia. I will be on ITU for three days as long as all goes well and will breathe unaided from the start. It is clear that he is in charge of my post-operative recovery; this was the same in France. I don’t know if it is the case in UK as I don’t recall ever having such a long discussion with any professional or feeling part of the process and aware of what would happen.

Once your CT scan has been perused and your condition accepted as operable or resectionable as they call it you spend a day having your lung function and general health tested. This includes: blood tests from your ear to test oxygenation I think, they put on some burny stuff before. You also go into a cubicle with a breathing tube and do various breathing tests: in fast out slow, in slow out very fast and in slow out very slow etc. You have an ECG test, monitors just monitors stuck to your chest , back, arms , legs etc and finally the dreaded cycling test. For this you are decked out in a mask, a blood pressure monitor on your arm and something on your ear where they keep taking blood; you also wear a sort of towel bib supposedly so that your chest doesn’t look too ridiculous while you pedal. They get you to do that keeping the monitor between 60 and 70 and cunningly increase the difficulty as you keep going. You must lift your hand from the handlebar and signal as soon as you start to feel really out of breath or if you legs are about to drop off. Don’t stop pedaling at that stage wait till they tell you too – its not long.

For the pre-operation the day before a nurse came to shave me under the right arm and he looked for any other hairs on my upper body, luckily only found a few on the top of my shoulder. At 17.00 had what they call operation soup and an hour after an enema. I had to pack up all my clothes in my bag and label it and only take nightclothes and soap bag all labelled with my name to the ITU.

Operation day

I was due to have my operation at lunchtime but on the day they brought it forward so I dressed in the operating gown and put on the surgical stockings they gave me. A canella was put into my hand. I was given a premed pill and taken to the operating area at about 8.30. I was wheeled into a small room where a technician did various things, nothing significant but we chatted; he was young and he told me that he was on a form of national service and that later he would train to be a doctor. He had the right grades etc. Jens,the chief anaesthestist who I had met in my room came in and I sat with my back to him while he inserted the epidural channels. He used a local anaesthetic, it was still a little painful when he put the channels in and he had to poke around a bit. I then lay down. He placed a mask just above my mouth not on it and said I would now go out. I presume something was put into my canella but I felt nothing and can remember no sinking sensation.

I woke up 6 hours later although of course it just felt like a minute later. Someone was tapping my face and said it was all over, I asked if it had gone well and what was the time; they said yes very well and told me it was 3.30. They asked if I had pain and I said only in my hips – presumably because I had been in one position for six hours. I jiggled about and that got better. I was in a room with high tech pumps and equipment and with all manner of tubes coming out of me. There were two other stations in the room but they were unoccupied. People came and did things to the tubes on a regular basis, asked if I was OK and I drifted in and out of sleep. Stewart, who had called them at around 3.30 came into see me at 5.00pm and he says I was remarkably alert and we chatted and I checked that he had called everyone he should have. We were told that 35 mets had been removed and that even the largest one had been done by laser not lobotomy. Dr Rolle came later and repeated this news but also told me that he had removed a lymph node and all had gone for testing. He had taken all he could but we all knew that more might arrive so probably some chemo was the next step back in the UK. That was planned for the New Year in any case. The next lung could wait until after that. The openings were all under my right arm a long incision with two drains coming from it. I had a port on my chest for antibiotics etc to be inserted and I was catheterised.

For those of you who aren't squeamish you can watch the procedure on video at It is video number 4 ("Thoraxchirurgie

Stewart left after about two hours and then I just remember sleeping a lot and having my tubes fiddled with. I felt no pain. The mood on ITU was very different of course and the only complaint I had was the noise levels; I expected to be interrupted at various times and have things done to me but the staff did seem to shout and laugh a lot during the night; later in my stay I told them off a little and asked them to keep my door closed and things got a lot better.

Apart from that tiny thing, they were all kindness itself both here and on the main ward. I remember having my hands and arms washed on that first evening and it reminded me of one of the nicest moments of my life, just after Sam was born (first child) when a nurse came and washed my hands with a flannel just like my Mom used to do. There was again a preponderance of male nurses on ITU and very easy on the eye. They did seem to have an obsession with football however so their first question was usually where did I come from and then after the ah yes Birmingham City response, I explained my family supported Aston Villa who also came from there and they were all at pains to tell me that the Villa had beaten Manchester United the night before - is there no escape! There was a doctor who checked on me regularly with stethoscope and people looked at all my readings very regularly. Each morning and evening a portable Xray machine was wheeled in and pictures taken of my lungs. On the day after the operation I was allowed out of bed, just to wash myself while they straightened my bed and I was fed normally. I can remember being amazed at my ability to down a big bowl of pea and potato soup with two large frankfurters on Operation day +1. The rest of the stay remained much the same; there were regular visits from the physio to massage my back with a machine that looked like a sander and she gave me some circulation exercises to do and a sniffing one to open up my diaphragm. I had my own breathing exercise machine which I was to use every hour as on the ward. On Operation + 2 days I was given some tablets to help me cough. I had two every meal time and they did not suit me at all causing severe acid disturbances in my stomach. I asked for them to be discontinued and that was no problem. It did affect my appetite however and made me feel iller than I had up to that point.

Dr Rolle and Jens the chief anaesthetist visited regularly and reported on my progress, I was doing well apparently. Operation + 2 days was Stewart’s birthday, I told the doctors and got them to sing Happy Birthday to him – quite a sight and later that evening Jens bought him a bottle of beer! I had my first and least important drain taken out on that day and was allowed a little walk to the bathroom. The next day I was to leave ITU and gradually all tubes except the drain and the epidural painkilling drip were taken out and I was given a stand to push them around on. I did a bit more walking but it was slow progress; once a bit quicker as I was given an enema in readiness for my life back in normality. Then it was time to move back to the normal ward and I was to walk. I wasn’t feeling great, only the second day on my feet and still a bit queasy from those tablets but I made it half way before they fetched a wheelchair. I had a pretty rough morning back on the ordinary ward but after an hour’s nap bounced right back and recovery was all one way after that. People phoned and were amazed at how strong I sounded. It is Ok to use mobile phones on the ordinary wards by the way.

Recovery for the next two days was just a case of getting used to walking, washing myself, having regular xrays and blood tests; antibiotic infusions etc; food was completely normal as before. Stewart and I developed a good regime of supplementing the German diet with lots of prawns, smoked salmon, tomatoes, fresh fruit and delicious cakes. The doctors looked at my last drain tube regularly and monitored the flow or lack of it and on Operation day + 5 they decided to take it away. A lovely doctor did it and it only hurt as much as pulling off a particularly nasty plaster. The next morning they took off the epidural painkiller and started me on a regime of painkilling tablets which worked extremely well. I was now free of all tubes and drains and could walk around a free woman. It was the weekend so we just kept up the regular breathing exercises and little walks around. Temperatures dropped to – 20 so we did not walk outside. I did become more breathless once the last drain tube was taken out and this did worry me as one of the doctor’s told me that the xray I was to have the next day was the most important as it would show if my lung had completely reflated. I was convinced it hadn’t as I wasn’t breathing very well but I went the next day and within an hour they came to tell me all was well. We discussed leaving as it was by now 21 December. I was resolved not to be home for Christmas and Dr Rolle confirmed this and told me that he would prefer me not to fly and I could probably leave earlier if I didn’t. My son and his wife, Sam and Julie were driving up the next day to spend Christmas with us (all the children were supposed to be coming to visit until Christmas eve but the weather had different ideas and flights were all cancelled). So a plan was set that we would drive home with Sam and Julie Julie is French and so they brought all sorts of wonderful food for our Christmas meal. Once you are fit enough to walk outside etc the staff have no objections to you eating in their guest house( see below) or in local restaurants. You should just discuss the arrangements about getting medication etc with them previously.

Gym exercises after the operation focused on breathing on your operation side; they are done on mats on the floor which I found quite daunting as at the best of times I cannot get up and down easily, but they gave me a stool to lean on and were very understanding. I found these exercises helped the breathlessness.

I left the hospital and returned home two weeks after the operation, for the last five days before I left, I was really just having bed and breakfast at the hospital and spent the rest of the time with my family in the hospital guest house. This was over the Christmas period and we were able to turn it into our own home from home and had a really good time. We also visited Meissen on Christmas Eve ie Operation + 10 days for Gluhwein and hot sausages and to Dresden on Boxing Day for delicious cakes and visits to the Art gallery etc.

On the day I left I had lung function tests and xrays which showed that I was recovering well.