Jean Trainor’s Famous Last Words

Jean Trainor died on July 4, 2011. She was wonderfully warm and funny but also passionate about the NHS, having served as Deputy Chief Executive, NHS Confederation 1986 -1998, Chair, South Birmingham Mental Health Trust 1998 – 2002  and Vice-Chair, South Birmingham Primary Care Trust 2002-2006). Phil met, danced and laughed with her at many NHS conferences when he should have been doing some serious networking.

Like many patients with a very rare disease, Jean’s diagnosis was picked up late although it seems that opportunities to spot it  before it spread may have been missed. Jean wrote a brilliant blog about her experiences, and I’ve only selected the critiques of her treatment, in reverse order. If someone so positive and articulate who’d given such service to the NHS struggles for good care, it makes me fear for the rest of us. The NHS is supposed to enshring patient experience at the heart of healthcare…

About Me

I am 62, retired from running my own events business. I have been married to Stewart for 43 years and have four fantastic children, Sam, Joe, Luke and Jess, four grandchildren, Harry and Danny and new twins, Max and Charlie; I also have two step-grandchildren, Hannah and Chelsea. On 11 September 2009 I was told that the very rare leiomyosarcoma that was found in one of my veins in summer 2008, and removed, had metastasised and I now have sarcomas in my lungs. By April 2010 it had got to my liver and back to my leg. In January sarcoma nodules were found on the horse’s tail, the bunch of nerves that come out of the base of my spine. Despite radiotherapy, the paralysis spread very quickly and I have no feeling at all from my hips down. I will try to log what all this feels like in this blog and keep in touch with friends, family and fellow travellers along the way.

Monday, March 1, 2010

And the little one said roll over


I shouldn’t be writing this, I certainly shouldn’t have to. I should be in the hospital having had my bloods taken and be waiting for the chemo drip to be put up this afternoon but I am not. Ann the bed manager called this morning. She is lovely and we are now on first name terms. She is a nice person doing a very nasty job and she said they didn’t have a single spare bed; there had been emergencies and people transferred from their other hospital, (Selly Oak for the locals). They will call me tomorrow to see if there is a bed and of course I will be a priority, and I think yes, along with the emergencies and the other people turned down this morning. I asked if this was safe as I was supposed to be on a course of treatment, so much every three weeks etc and she said this was normal and it would all just roll over; and I think yes when someone rolls over and then falls out of the bed, no doubt, just as the song says.

Now it may not matter if I miss a day or even two, although I would like to see the evidence! But does it matter that I will now probably not be able to go with Harry to see Alice in Wonderland on Saturday as I will still be feeling rough? Does it matter that my calculations about whether I will be able to meet up with my American friends on a rare visit to Paris in April are now thrown out? Does it matter that we have had to tell the garage that Stewart now can’t pick up our car tomorrow morning? Does it matter that according to my doctor I can expect to live for about another 9 months on average and this is one wasted day of that nine months or 19 or whatever it is? Yes it ****ing well does matter; all of it.

Wake up people YOU DON’T HAVE ENOUGH BEDS! And don’t tell me that the new hospital will sort it because I was there don’t forget when the reduction in beds was announced and I asked would this affect patient care and I was fobbed off as usual by the Oh but we will manage it all better nonsense. This is happening to me and my fellow cancer sufferers now people, here, not in a third world country, not in some distant rural locality but in BIRMINGHAM, in the second city of a relatively rich country in a REGIONAL CANCER CENTRE, people!

If I had hair I would tear it out, instead this post is going off to my old gang. So Andy, David N, Cynth, Elisabeth, David C and Julie what do you say? Is this a service to be proud of? If it was your Mom etc etc…

Saturday, April 17, 2010

Going round in circles

Here we go again. I got out of hospital after chemo number 4 on Thursday night not feeling too bad, no sickness and I had had a blood transfusion to up my Haemoglobin so was feeling reasonably energetic on someone else’s fuel. After braving the election debate and thinking I could have done a better job myself, I went to bed and looked at my fat leg which was feeling achy, stiff and looked even fatter. Next morning off to GP- could this be a DVT (known side-effect of some chemos) or recurrence of leio in the vein? Yes of course it could so after lots of frustrating calls by him and me I get sent to the DVT assessment service at Selly Oak almost 3 years to the day from my first visit there at the beginning of this sad tale. To say I had a sinking feeling is to put it very mildly.

The DVT assessment service has changed in that time and mostly gone into the community I was told, I cannot tell you whether this is a successful move as I went to the hospital to a funny sort of in-between ward. There I saw a very charming, pleasant young SHO (junior doc) about 25 I’d guess. By this time Jess, my daughter had joined us and turned her full investigative, don’t piss me about, skills on the poor lad; so he had me and her going at him. To cut a long story short, I was scanned, they found a blockage from thigh to knee; they said this was unusual but after checking with my oncology team decided to send me home with heparin injections and check me out when I go for next chemo. Poor SHO had to deliver this news and receive all the frustration back from us all. Anyway this was at 5 in the evening so there was no way I was going to get an MRI till Monday or even the chance of booking an appointment for one. Heparin I knew was a good move at this time so off I tottered back home with a very sore leg.

I will contact my oncologist on Monday and demand an MRI before I go back for next chemo. It was all the usual NHS story I am afraid:

* why didn’t they check my leg during the chemo I had told them it was playing up a bit?

* why did I have to wait all day and be trailed about half a mile in a very old wheelchair by Stewart and Jess to get an ultrascan?

* why did it then take another three hours to decide what to do with me?

* why did I not see a Consultant just a disempowered junior?

* why wasn’t am MRI ordered immediately – they know my history!

* why do I have to fight these battles all the time?

It’s the same with my last scan: the doctor did come to talk to me about it but he couldn’t tell me much more. The facts are these and again I have to fight to learn more:

* they hadn’t scanned me at the start of my chemo even though I kept asking about this

* I haven’t really had one scan like any other before it throughout the whole treatment, they have all been different and shown different things- no consistency

* this could all be academic as I now definitely have mets in stomach and liver but I can’t tell you much about them, the descriptions are vague

* same for the lungs I can’t get a good picture of progress for good or ill there; but he repeats that the Xrays show some small shrinkage.

It’s all a terrible mess but along with the MRI request I am sending over a list of specific questions about size and number of mets on Monday. I am trying not to let all of this get me down and so far succeeding against all the odds maybe it’s the sunshine.

So our planned trip to France looks very unlikely for next week and anyway we would have had to try to get around the Icelandic volcano! It seems I must be part of the jet set now as this stream of lava has directly affected not only us but loads of close friends and family:

* our friends Celia and Richard from California are marooned in Paris; we at one time were going to be there with them so that would have been fun!

* Graham and Ruth, brother and sister in law are stuck in Spain and we have just heard they are getting a taxi from N Spain to Paris and getting Eurostar back tomorrow – what a trip!

* Our old friend Rudy from Michigan (once married to Celia!) flew on Thursday to come and see us; he got to Frankfurt saw all the flights cancelled, no idea why, but one was going to Heathrow so he ambled over and got it – it must have been the last flight into the UK.

So if my bloodstream is anything like the lava stream and it feels pretty close at the moment, I am hoping that it and the bloody obfuscations of the health professionals clears a little and that all of us can get back to living our normal boring lives again.

Tuesday, February 16, 2010

Bad hair day


No it’s not falling out. I keep giving it a tug and nothing comes away and now and then I shake my head and just get the odd strand floating off with all of the dust motes showing up in this lovely winter sunshine we are having. Nonetheless it’s a bad hair day, mainly because I haven’t had it cut since before I went to Dresden and that was last year! For decades now I have been going for the gamine look, well on my head anyway the rest of me hardly falls into the elfin category. If I leave it longer than six or seven weeks, it turns into the gammon not the gamine look, flat, flabby and in need of a pineapple to perk it up. I know I have time on my hands these days and I could try blowdriers and crimpers, but I learnt long ago that I had no skill and was perhaps put off by the grips and rollers and, if I recall, something called a razor cut that my Mom tried to bring into force to persuade a bit of style into my hair when I was a girl. These days, if it can’t be sorted by a quick run through with the fingers after a nice soaky bath it’s no good to me. I don’t even own a comb.

So I have just booked a cut for Thursday and it will be a race to see who gets there first the chemo or the hairdresser. I will get Stuart, hairdresser not husband, to cut it as short as he dares and not worry that it will cost me half of our day’s being on a pension allowance and it might be a waste. If I dare I may even go blond or bright pink because after all it won’t last for ever.

Monday, February 15, 2010

Credit where it’s due

They didn’t print my letter in the Times – see 8 Feb. I got edged out by the present Chair of the BMA and the past Chief Executive of the NHS, wouldn’t be the first time and why would anyone want to listen to what a patient had to say anyway? At least I get to keep a few friends now and am bundling up NHS commenting blogs to send to said friends and readers who from time to time have included the present Secretary of State for Health so put that in your pipe and smoke it Mr Editor of the Times.

Many of you will know that over the past year or so I have spent three weeks in a French hospital, another three in a German one and now three days in a UK one. That three days is the latest of many experiences of UK health institutions with kids, parents, partner and yours truly. France has included my stay and two, week long stays for spouse. So I am going to do a league table with comments and then send it to those that might listen.

Marks out of 10 as I can count that far still

Access: Getting seen in the first place

France – 9.5 although I am told it’s hard to get an eye-test
Germany – 9.5
UK – 2. The present government have done loads to get waiting times down and pushed money at the problem but it is just not acceptable that 26 miles over the Channel you get an appointment for a secondary referral in a day or two but here we congratulate ourselves on getting it down to 18 weeks

Seeing the right person

France and Germany – 9.5 – sorry just can’t bring myself to give the perfect 10, I would be no good as a Winter Olympics judge. You get to see the person you and/or your GP have decided you should see, the organ-grinder not the monkey

UK – 2. Even after 18 weeks wait, you rarely see a consultant, most often a registrar, but even just an SHO sometimes; this in my very direct experience leads to poor diagnosis

Waiting for things to happen

France and Germany- 9.5 again, very little waiting in corridors or waiting rooms
UK – 2 again – oh my God those corridors and depressing rooms

The buildings, furniture and fittings

France and Germany – 9. I did go on a tour of France, Germany and the Netherlands once, looking at hospital buildings, so have seen a few more than those me and mine have stayed in.

UK – 3. A bit generous that but I know we are getting a super new hospital in Birmingham (the reason for that trip) which I fully accept will be an 8 at least. Let’s face the facts in France and Germany I had my own room with en-suite bathroom, all nicely decorated and bright; the most I would have had to put up with was a two-bed room with en-suite bathroom. Last week in the UK, I was in a six bed bay with no door; there were three toilets down a corridor for 28 people of mixed gender; no shower and not very easy to use sinks. We had to leave cardboard containers with our pee in it to be tested and there it was sitting next to Jim’s and Elsie’s; named up of course so we all knew what each others pee looked like.

Doctors

France and Germany – 9. As above you see the top person and then she/he keeps popping in every day to make you feel loved. The real question is their skill of course. I can’t fault the ones I saw, or Stewart saw but can’t give a national judgement; I don’t think anyone doubts that docs in France and Germany are well trained.

UK – a difficult one for me; the doctors I saw originally score nil points; the ones in the cancer centre I would put on an equal footing to France and Germany, so 9 for them but a few more visits to patients on the wards might not go amiss.

NB: we pay our doctors loads more than they do in Germany and France.

Nursing

Germany – 9
France – 9
UK – 9.5

At last we come first! The UK nurses do have the advantage of speaking my language which helps but they were brilliant last week. They worked their socks off, they did seem to be under more pressure than their continental counterparts and that wasn’t because there were less of them but more because of the layout and the kit. I had to keep calling them to sort my pump out as the infusions kept stopping and that meant more hours in the hospital, not good for me or them. Never had a pump fail in Perigueux or Coswig. What was really good was that however busy they were they never failed to respond to a question or to give a helpful word; in the middle of a busy medicines round they would stop and have a chat and put your mind at ease. Didn’t get that abroad but that was because of the language barrier really, if you can’t get get passed ca va; oui ca va bien you are in a bit of trouble communications wise. The German “do you have any vishes” was slightly more challenging.

Food

France pre-op – 9.5 – Five courses twice a day, included duck and lovely fish and the lady who shared my room one day said that in Bergerac hospital they have a wine list! Post-op – 2; it suddenly changed, I don’t know if this was because I was a fatty or maybe it was something about protein not being good as it builds up scar tissue but it changed to a strange diet of mashed potato and bland pasta

Germany – 2 wurst and wurst and lots of it at funny times

UK – 9. It wasn’t bad at all and I liked the system they had for bringing all the options round on a trolley so you could go and have a look and a sniff at what was on offer. They always had nice things like baked potatoes and salad if you didn’t fancy the full works; the full works when I had them were tasty and warm.

Cleanliness

France and Germany – 9

UK – 9.5 – how about that then, I would leave aside the toilets and only give them a 5 as that mouldering pee was not attractive or I suspect hygienic. The level of cleaning on the wards in the UK was the best.

Rest

France and Germany 9.5
UK – 2

Sorry but you just cant sleep or recover as well when you are in a room with six people and there is only a thin curtain between you and the others – if you are lucky. In Birmingham the lights are too bright, there isn’t a door to the corridor and however much the staff creep about, and they do, trying to keep quiet if they have to tend to one of your neighbours you hear and see them. Sleep almost nil

Parking

France and Germany – 8 – not plentiful but free

UK – 1 – reasonably plentiful but more expensive than big commercial sites, we parked in the centre of Dresden in an underground commercial carpark to go sight-seeing; it was run by the same company who run the local hospital one here; we paid 0.75 euros there for an hour and £2.20 here .. in a hospital, because I am sick. Sort it out!

Overall

France – 9
Germany 8.5 – only the wurst let it down
UK – 4 and my early experience C minus, minus , minus as one of my old teachers used to mark the stuff she was really depressed about.

Monday, February 8, 2010

Letter to the Editor and bed news


The Bed Co-ordinator who was of course very nice, even at 7.30 on a Monday morning, just called and I will have a bed. Not straight away, I will have to wait in the day room while they “shunt” things round but sometime today I will get to lay claim to my own piece of furniture. So the warfare begins.

On a similar note, I have dashed off a letter to The Times which I have copied below. Let battle commence!

Sir

Your leader of 6 February called on the main political parties to tackle reform in the NHS. As an erstwhile Senior Manager of an NHS organisation and chair of an NHS Trust, I couldn’t agree with you more. I now have a rare form of cancer which is terminal and have had care here in the UK, by chance in France and by choice in Germany. I now know, therefore, that what, where, when and how our European neighbours receive health services is so superior to what, where, when and how the NHS does it that it should be a shame to us all. The solutions are not simple. A former Secretary of State for Health once described it as trying to turn round a tanker, I wonder now if the tanker needs to be scrapped and a new model brought into play. Two ideas to start with, drawn from my recent experience and observations: firstly we should question very closely what we have gained since the Griffiths Report of the 1980s which introduced a tier of management into the NHS that has grown like Topsy due to more and more Government initiatives and which is unquestionably very expensive. There is no such tier across the channel and we have to ask ourselves what benefits it is delivering to patient care. Are these managers, all in my experience dedicated and hard working people, in fact getting in the way of the quality our neighbours enjoy by soaking up precious resources and spending time and energy in saving money that in fact desperately needs to be spent on front-line services? Secondly as a nation we have to stop thinking that high quality healthcare is some sort of God given right which we only have to pay peanuts for; we need to grow up and dig deeper into our own pockets just as they do in Avignon, Aachen and I presume Amsterdam. In a nutshell we need to pay more bucks and get more bangs, scans and good old fashioned patient care from every single one of them.

Jean Trainor
Deputy Chief Executive, NHS Confederation 1986 -1998
Chair, South Birmingham Mental Health Trust 1998 – 2002
Vice-Chair, South Birmingham Primary Care Trust 2002-2006

Sunday, February 7, 2010

Lies, damned lies and statistics


Lot of interesting emails this morning from the American leiomyosarcoma group, who are, in my view, leading the way on getting recognition and meaningful research into this pesky disease, and they are all unpaid and fighting the b*****d thing themselves. There were lots of statistics about survival rates which don’t make comfortable reading and are mighty confusing for a person like me who took three goes to get maths O Level and then only got a Grade 6; mind you my teacher was Miss Jacob and believe you me leiomyosarcoma is marginally preferable to a lesson from her.

I think the very best statistical twist I can put on things is that – with my type of leio, ie one of the worst, and the length of gap between primary discovery (even though that was at least 14 months late thanks to very poor doctoring) and secondaries emerging, not good in my case – my chances of surviving for five years are about 2%, not the best odds! I read other articles which suggest that if you have aggressive surgery, which I have, your chances, if you are vaguely like me, go up to 18% but my doctors say otherwise. The chemo I will start tomorrow, if the bed stats are in my favour, will only have about a 20% chance of working and that is not for a cure but for giving me a few more years.

You may all be getting very depressed by now and I am sorry, but Pollyanna here would like to point out that I only had about a 5 in 6.6 billion chance of getting this thing, where I got it, in the first place; aren’t I the lucky one! I have a daughter who was conceived while I was on the pill and breast-feeding; and Stewart had a very bad back that month which restricted conceiving opportunities down to one in 30 if you get my drift. Miss Jacob didn’t terrify enough skills into me to work out the odds there but they are teeny weeny. Finally the other day in Maumont the weather forecast said we had a 20% chance of snow and we got the worst fall in decades and were snowed in for days; down in the valley they were basking in winter sunshine.

So I know my chances of seeing 2015 and beyond are probably less than winning the lottery, a lot less in my case as I don’t buy a ticket. But there are always winners and statistically I could be the one with the big grin and hopefully all my own teeth, saying it won’t change my life and you can be pretty sure statistically that I will be lying through self same teeth, false or otherwise.

Don’t know if I will have a bed tomorrow and don’t know if the bed will have wifi. in fact don’t know anything except that I will post news when I can.

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.

Friday, October 23, 2009

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 getting 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 replied 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 didn’t 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.

Thursday, October 22, 2009

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 doesn’t 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 don’t look at Stewart.

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2 Responses to Jean Trainor’s Famous Last Words

  1. Yvonne Sawbridge says:

    Jean is such a sad loss and my heart goes out to Stewart and their family. These blogs sum up the Jean I knew-articulate, humorous and thought provoking. There was not a sniff of self pity either- a remarkable woman. RIP Jean. Yvonne

  2. Stewart Trainor says:

    Dear Phil,
    Don’t know if you will ever read this. Thanks for posting Jean’s words. Her blog is an amazing testimony, not only to her experience but to her passion and intelligence, I’m only just readng it. I couldn’t while she was with us, it was too close, I’ve posted two more entries. One is the news of her death – what it meant me. The other is an electronic record of her funeral which, true to form, she organised and largely scripted. You might like to read it.
    Best wishes Stewart

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