Tears and a trip

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

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

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

Batman not Robin

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

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

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

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

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

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

Institutional rarism! Discrimination sucks

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The NHS: guilty until proved innocent

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

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

One door closes and another opens

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