Confessions of a broadcaster.

So, “yer nae on the telly much anymore are you?” is a question I get asked a lot. No. I’m not. But as you know life has a habit of giving you a good boot in the bum when you least expect it. Which is exactly what happened to me. I was having a rare old time when the shit hit the fan.

You are reading a Blog written by a woman who has LAM.
What?

OK here it is in its unshortened glory. lymphangioleiomyomatosis

No I can’t pronounce it either.

I don’t want to be health bore and go on and on about it but in  a nutshell my lungs collapsed and surgery was the only option. I did write about it for the LAMpost which is the place people with this rare and inexplicable lung disease can gather and find support. So I thought I would repost what I wrote about it here….if one person in a similar situation reads it and feels better – great. If one person reads it and can add any information or theory as to why it happens then it can only be good.

With only 200 women in the UK with this condition – and a few of them being broadcasters –  there has to be a connection and only by writing and talking about it will we potentially find out what it is.

Might as well be hung for a sheep as a LAM.

Oh and I will be writing this blog about life and how I love being able to live it with my sausage dog, friends and fun as I am a cup runneth over kind of girl once I get this off my chest – pun intended.

My Diagnosis By Alison Craig

I had a collapsed lung five years ago then nothing. It was a fast and virtually pain-free fix. The doctors quickly reinflated my lung and off I went.  I racked my brain as to why this had happened and came to the conclusion that it was because I had choked on a tangerine. After a few days of confusion, I rejoined life with gusto.

In between times I continued working on radio and TV, and enjoying life.
Then out of the blue two years later, the same lung went down and the same procedure took place in the same hospital, but then a week after that, the lung came down a third time.  This time, the doctors decided to ‘stick up’ my lung up to prevent it collapsing again. ‘Stick up’ my lung was slang for a pleurodesis. I didn’t really think about it, it was just what had to be done.   Of course, the reality of the procedure is somewhat gruelling, and not something that bears too much thought.  It involves keyhole surgery during which a camera is inserted to check the lung, repair any holes and to glue the lung to the inside of the chest cavity.

During the process, a biopsy was done as a matter course, and then I was sent home to sleep in an upright position. It transpired this wasnt’ a problem as I felt like I would never sleep again, I was so scared. After ten days, I got a call to come back to the hospital; I suspected something was up – after all I had only just returned home and was still in recovery.  My surgeon told me  I had LAM.

LAM? What on earth is that?

My first question was, ‘Is it a precursor to cancer?’ The dreaded C , the big C, the word we all dread hearing. No, I was informed, but we will want to do the same procedure on your other lung as the chances are it will also collapse when you have recovered from this op. Not what I wanted to hear when still in recovery from my first op, so I went home and concentrated on my recovery, deciding against reading anything about the condition until I was stronger.

About a week later, my other lung collapsed and whilst still weak and I was in for another pleurodesis. Double whammy.  I stopped eating as I was a clenched ball of nerves. Honestly I had been the fittest healthier most robust person up to this point. Never a cold, A flu. A chest infection. A wheeze  and now I was unable to walk upstairs and my whole life was in the balance. Only when I began to get a little stronger did I look on-line for information about LAM. That was my first mistake, and my advice to anyone reading this is do not search on-line for information about LAM. Goodness knows it’s tempting, but don’t. The hysterics, the headline grabbers, the out-of-date information that whirls around in cyberspace will do you no good at all. I know. I searched on Googled and what I found threw me into a black hole of panic and despair. “A fatal lung condition” Stress caused me to lose over two stone.  I stayed in that place in information shutdown until I met Professor Simon Johnson at Nottingham University Hospital.

My second piece of advice is ask to be referred to Simon. The day I met him, my life began again. He has made it his life’s work to study this rare condition and as a result he is the man you want to speak to. As there are so few cases in the UK there is a general ignorance about the condition. GPs, doctors, surgeons  – these people will know very little if anything about LAM so don’t listen to any of them, just listen to the man who knows and the great team at LAM Action.  Simon is the man who has the most up-to-date research and who is the voice of reason in a mire of soundbites and historical, hysterical nonsense.

There is so little known about LAM, even in medical circles, that when a patient presents with a collapsed lung or other symptoms which could be related to LAM, she is generally patched up and sent home with no further support, they way I five years ago.
So as I said, do not search for data on-line. Search engines do not update the information on treatment. Data can be out there for years misleading you, me and the next woman to be diagnosed.  It would have helped me immensely to have been handed a sheet on day one which gave the following information:

  • What is LAM in a nutshell.
  • Only women get it.
  • It is believed it maybe oesterogen-based.
  • There is a very wide spectrum of this disease from so mild a patient may never know she has it, to a more severe version.
  • Do not search on-line. (I know I say that a lot, but it is so true. If you were to read the information on the back of a bottle of Night Nurse, you would become hysterical and take it to the local police station rather than take it for a bad cold.)
  • Cherry-pick the information you need and do not immerse yourself in the minutiae – Professor Simon Johnson is there for that. Let him do the medical stuff, you concentrate on looking forward and getting on with life. I do not want you to lose two stone – an effective but unrecommended diet plan .

Until recently, doctors didn’t test for LAM so there may well be thousands of women who have it who had a collapsed lung or other symptoms and never knew what their underlying condition was.



I wish I didn’t know. The main battle with this for me is psychological as the very real questions of ‘why’ and ‘what happens now?’ cannot be answered.  You may feel very alone; I did.  It took me two years to get in touch with LAM Action in the UK and I encourage you, when you feel the time is right, to do so, too. They are great. I am trying to give you a shortcut to peace of mind about the future, though I still lie awake at night wondering was it my diet, pollution, chlorine, living in a city, living by the sea, the hair dye I use, sound studios I worked in for years, stress, bad posture… and so the list goes on until dawn, but whatever it is you and I have in common we have to try and find out what it is.

There are so few of us, the way to beat LAM once and for all is to share every piece of information. I share a lot on my blog (alisonsdiary.com) about life, the universe and everything. In fact, I am going to post this on there too – after all we are all in this together, and we women do LOVE to talk.

I hope one day you will be ready to tell your story and wish you well on your journey.
Alison Craig

 

 

Day 3 Thalys to Paris. I said Thalys! Honestly your mind.

photoSo next leg from Amsterdam to Paris. The Thalys train. The website sold it as a rather groovy train. Ahem. groovy in the 60’s yes. Red velveteen, very Marc Bolan and as you can see…….pointy.

It arrived on time and there was a bit of a rugby scrum when it arrived. There was no rush but tell that to the giant, hairy headed horror who practically rugby tackled my 81 year old mum to get onto the train before her. We gave him the collective evil eye – a terrifying sight – and Mum gave his case a surrepticious kick as we walked past.

There were 16 seats in our carriage. 4 round each table and no room whatsoever for any luggage at all. At all. So in came this Quentin Wilson lookalike man and his wife. They came with the biggest cases in the history of the suitcase manufacturing industry.

Quentin Wilson incognito in train in France.
Quentin Wilson incognito in train in France.

As you can see the capsule wardrobe has not yet arrived in their country. Ellie keen to break the language barrier asked if he had his children in there. He laughed and said ‘N o..chocolate’. We don’t know why.  Unperturbed they jammed the cases in blocking us all into our seats.

Then opened the door and in came an Asian family and an American woman. They too had ridiculous amounts of luggage and jammed them in to every shelf, aisle and space not available. Next came the mad red eyed rugby tackler.  There was a collective internal groan as he muscled his way in.  Then trailing behind him , we realised he wasn’t on his own he was with what I would describe as a brow beaten wife and timid child who were interestingly but not surprisingly carrying his luggage.   It was apparent they didn’t want to be with him anymore than we did so I spent the rest of the journey feeling sorry for her and wondering if I could do a quick google translation on a note to say ‘ leave him he’s a buffoon, life can be better’ but as there was no wifi and he was a growling bear with a hernia so I refrained.

 

Next up a  jaunty hat wearing amusing character from Dublin whose seat was completely obscured by bags. So he perched. “Oh” he said “Health and Safety up to their usual standard’ as by now there was literally no way to get in or out of the carriage. God help someone if they needed the loo or to breathe in a normal human type fashion.  It  was at this point the guard opened the door, realised he couldn’t even step into the carriage due to the log jam of stuff everywhere so we waited his almighty Spanish outrage but he just poked his head in, rolled his eyes,  and departed leaving us pinned in and incredulous.

 

So that was the journey.

3 1/2 hours. Stopped at Antwerp then Paris.

Ah! Gay Paris.

 

Next instllment Paris to Barcelona – brace yourself Sheila.

 

 

 

 

 

 

 

THE BACK, THE LUNG AND 81. DAY 1.

Why anyone would like to travel with the mouthy slapper on the left who knows - but lucky for me they do! We're off!
Why anyone would like to travel with the mouthy slapper on the left who knows – but lucky for me they do! We’re off!

Day one

When you get walloped with bad health you lie still looking at the ceiling thinking what will I do  if I ever get out of here? Go to Borneo to see orangutangs in the wild  was first on my mind. I have never seen them and I’ve been talking out its since I was 12. Unfortunately my particular lurgy was lung related so I can’t fly. I  confess in the aftermath of my health scare when I received this news it was with mixed feelings. Bummer I can’t fly. Closely followed by ‘Whoopee I can’t fly!’ as I have always hated it anyway.  Of course everyone I know flies everywhere they go. It’s fast, safe and cheap. So as recovery trudged on for months and months, so did my thoughts of sunshine. I have to get away. Its been over a year I need vitamin D and hot UV heat and light on my bones and my bluey white skin I am not asking much just enough to start reaching a normal Scottish pinky colour.

 

So with my 81 year old mum one day I spat it out.

‘I want to go somewhere hot.’

‘So do I’ piped up mum.

‘Well it’ll have to be train, boat, bus, bike and Shanks pony’ I said pulling no punches

‘Fine’ she said not bothered at all. ‘I’m game’.

So the idea was born 2 weeks ago.

The challenge? To get to sunny Spain to have a holiday without taking off.

Eurotunnel is the obvious choice but of course…but I can’t do that either! Something to do with the pressure change. So let’s google boats. Lordy…..a grand tour.

But first let me tell you about our 3rd member of the  tour. Geordie El. She also hates the flying machine and we have talked about going on a Thelma and Louise style trip together for 22 year –(22 years!?  yes we have known each other since  before we were born).  She dramatically broke her back sledging two years ago so has also been in that prone staring at the ceiling contemplating life position. She is now up and about but cant lift stuff. I can’t lift stuff. Mum can’t lift stuff. So here we are. Three non lifting, hurpling dafties are off.

The team is complete. Step one…… train to Newcastle……. Look who’s in the same compartment when we arrive? Only our best pal Fraser on his way South to do Underbelly Business….and his constant and considerably more intelligent companion Issy. As you can see we love Issy. The most laid back dog in the known world. We love Fraser too but only because he looks after Issy or is it the other way round?

 

Fraser Smith and his wing dog Issy.
Fraser Smith and his wing dog Issy.

Being married to a restaurateur he does not  like to think of us on tour without food and drink so he wrapped something in a dishtowel and handed to  Ellie before we got on the train and lo and behold we started with a toast to us and our overland adventures

 

The eyeball
The eyeball give me a drink – NOW

…well we’re off….Excitement of the overnight ferry coming up mañana……

Izzy - the perfect travelling companion
Izzy – the perfect travelling companion