Family Matters

Since this photo was taken, a few weeks ago, 3 members of my family have moved away. A long way away.

James has finally, at the age of 24, left home and started on his new career. Its a big step for him, a life changing one, but absolutely the right one. I know he is worried about me but he cant spend the next *however long* waiting for something to happen to me. He has to get on with his own life. I'm so proud of him.

Grace and her Mum Sarah have moved with Tom and baby Noah up north, near Preston. Tom's parents live there in a lovely little village and they have moved into a pretty little house in the grounds. Again its absolutely the right thing for them to do. They are a proper little family now
with their own home and its a wonderful area for Grace and Noah to grow up in.

It was hard to wave goodbye to the 3 of them, even though I know we will still see them often. Sarah has been more like a daughter to me, especially since Ive been ill, and its been a privilege to see so much of Grace as she grew from a baby into a little person.

But life goes on.

Yesterday I had my 6 weekly MOT with Dr P. I was really glad to see him as Ive been getting an increasing amount of pain over the past few weeks, in my thighs (of all places) and my left hip. The pain in my thighs, in the muscles, is apparently yet another Sutent side effect (I think Ive had the full monty now!) and is pretty well controlled by taking paracetamols. As with the other side effects it should come and go. But the pain in my left hip is almost certainly due to the tumour in there. It wasn't very big on my last CT scan so it could be growing. Dr P suggested a bone scan but having had one before (its not nice and makes you radio active) I opted to wait and see how things develop. Paracetamols don't really touch this pain but I don't want to take anything stronger if I can avoid it. I'm hoping this will be like all the other pain Ive had in tumours in the past - that eventually Sutent kicks in and calms them down.

For some reason my Hb has dropped dramatically too. Its always been around 11 which is just about normal but yesterday it was 9. Under 9 and you need a transfusion. So I have until my next check up, in 5 weeks, to get it up by eating the right things. Which basically means steak and spinach (sounds good to me!)

Dr P isn't that worried (and neither am I really) I still look very well and feel well, apart from a bit of a limp !

At the weekend I start cycle 14 of Sutent - which seems pretty remarkable to me. Yes I've had a few blips along the way, mainly due to the side effects until I learn to manage them, but on the whole life has carried on pretty much as normal. A bit more than normal actually when you think of all the things I've managed to do.

Sutent has not only extended my life dramatically but improved the quality of it to the extent Ive been able to do some quite extraordinary things. Extraordinary for any 50 year old woman let alone for one with terminal cancer. And I'm so grateful for this - if it all ended tomorrow I would have no regrets, I have so much to be thankful for.

I would rather it didn't end tomorrow however as on Tuesday we are off on another cruise ! We are off to the Med. again but this time taking Edward and a friend of his, Matthew. This is a treat for Edward as he has just finished his GCSE's and although we don't know his results yet he did work very hard. The men have plenty of activities planned, such as mountain biking and visiting the NuCamp in Barcelona, but for me it will be a week of rest - and eating steaks and spinach !

(I'm sure there must be some iron in chocolate too?!)

The Price of Life

The title says it all really - once you have a terminal diagnosis and require treatment to extend your life it then has a price tag on it. And usually a pretty big one.

Tonight I watched Adam Wisharts documentary 'The Price of Life'. It focused on the appraisal process used by NICE to determine whether any new treatment should be funded by the NHS - particularly those for terminal cancer patients.

Being a patient with terminal kidney cancer and also someone taking an expensive life extending drug I have to say I thought the programme pretty well balanced and informative. But it did raise some questions, questions that a lot of terminal cancer patients have been asking for some time now.

In my previous entry I have commented on how offended I felt to have Prof Barnett describe me as 'blinkered' and compare the drug I need to stay alive to buying a car. Why do NICE seem to think it is acceptable to have a go at patients? When you are diagnosed with a terminal illness but know there is a very effective treatment available which can extend your life what is wrong for asking for it? And the very last thing you want to do is to have to fight for it at a time when you should be making every moment count.

And as for Ms Christie, CEO of Birmingham East and North PCT, I hardly know where to start. In the two and half years I have spent campaigning to get life extending drugs funded for mRcc patients I have never come across someone as callous and unfeeling. Her attempts at emotional blackmail, by intimating that a cancer patient on life extending drugs would be depriving the PCT of a palliative care nurse, were truly disgraceful. She then went on to ask if it was 'in a patients best interests to fill their bodies with very toxic drugs for the last 2 months of their life' - which clearly shows she has absolutely NO knowledge of what she was talking about. Which is outrageous.

Ms Christie - having worked in the NHS for many years and knowing the terrible waste of money that occurs on a daily basis I suggest you get your own house in order first. Then, and only then, do you have the right to criticise cancer patients. In fact no, forget that, YOU will never have the right to criticise anyone.

One very important question that was raised yet again is why can't NICE negotiate with the drug companies? Or why can't the government? No one seems to be able, or willing, to answer this.

The final question asked by Prof. Barnett was 'How much more valuable is a month of life - at the end of life?

I will tell you Prof. Barnett.

It is priceless.

NICE strike again

I'm not quite sure what qualifications are required to be the chairman of NICE - but it appears the ability to shoot yourself in the foot is one of them.

NICE have a new chairman - Prof David Barnett - and next week during a programme called 'The Price of Life' he accuses terminally ill patients of being 'blinkered'. As if thats not bad enough he then goes on to compare the use of life extending medicines to buying a car.

Dying patients who demand drugs on NHS labelled 'blinkered' - Telegraph

I shall be watching this programme with interest - I havn't met Prof Barnett yet but I'm sure our paths will cross very soon.

Oh, and by the way Prof Barnett - PLEASE don't tell me the NHS can't afford to fund these new drugs when last year it had a 75 million pounds surplus in it's budget.

What exactly were you saving that for?

To buy Ronaldo?

Dead Man Walking

I see it in peoples eyes. Especially if they havn't seen me for a while. It's obvious what they are thinking.....

"Isn't she dead yet? She was supposed to die ages ago"

It's almost as if they are disappointed in some way - it's only momentary and then I get "You are looking SO well"

And I am. And I feel well. And long may it continue thanks to Sutent.

None of us know when the bell will finally toll for us, not even me. So it's important that whilst we are alive we LIVE. Be positive and live your life to the fullest. Do things that make your blood zing and your heart race and take your breath away.

A very wise man in Rio said the best epitaph for my grave would be....

'When she died she was ALIVE'

Flight AF447 - 2/6/2009

Horrible, horrible horrible.....

I walked into Terminal 1 Rio airport and looked for the Air France check-in desk for flight AF447. You couldn't miss it. It was sectioned off at the far end and surrounded by camera men, photographers and journalists. As I slowly made my way towards it they all turned towards me filming and shouting questions - in Portuguese or French. This was the first AF447 since the tragedy. It all seemed so ghoulish and made me feel very uncomfortable - and more than a little afraid.

The Air France staff were quiet and subdued - in fact everyone was. At the departure gate we all sat in near silence. It was pretty obvious what we were all thinking. A mere 48 hours ago another set of passengers had sat here waiting for the same flight - and never reached their destination.

I'm pretty sure I was the only English person there - I craved for someone to talk to - anyone. I craved to hear the comforting sound of my mother tongue spoken. But when I got on the plane I found I was sitting alone. The plane was less than half full. Apparently there had been a lot of cancellations on what is normally a very busy flight.

The crew were wonderful - how could they be so cheerful and smiling when they had just lost 12 colleagues? But they were. I couldn't eat the food, it tasted of plastic. I knocked back a couple of brandy's hoping this would help - but it didn't. I couldn't concentrate on any of the films on offer - my eyes kept creeping back to glimpse at my watch - waiting for the time that, 4 hours into the flight, when the other plane disappeared off the radar.

The slightest bit of turbulence made me jump and grip tight onto my seat - I was afraid to go to the loo so just sat there with my legs crossed.

In the end I thought this is silly, get a grip Jane. I'm sure being on my own made it doubly worse. So I took 2 sleeping tablets and fortunately passed out for a few hours. We landed in Paris bang on time, I caught my connection and was soon back in Birmingham. Martin was waiting for me and I just flew into his arms.

Since I have been home I've found myself brooding about it. Thinking about what a lucky escape I had - how I had, oh so nearly, taken that flight. I only changed my mind at the last moment when booking it and decided to come home a day later. I've also been sleeping a lot - even for me. I think I've been a bit traumatised by it all to be honest. Hopefully writing it down will exorcise it for me.

I saw Dr. P. today and had the results of my CT scan - my disease still stable. Sutent is still working. Which is wonderful news. Something I need to concentrate on and try to dispel thoughts of the tragic events of Monday.

Tupyara

Yesterday was a disturbing day. The tragic news about flight AF447 going missing seemed to touch everyone here in Rio, either directly or indirectly.

Ana knew a journalist on that plane. A director of the company Matt works for was also on it. And I had a strong sense of 'There but for the Grace of God go I'

So it was in a very sombre mood I went to Tupyara Temple yesterday morning with Ana - but as it turned out it was the very best thing I could have done.

Tupyara is right in the middle of Rio, up a tiny back street. In fact if you didn't know it was there you would have trouble finding it. From the outside it looks a bit like a hospital (as it does on the inside as I was to find out), its a very tall building with lots of steps leading up to the entrance which leads into the main hall which is huge. Its like a small aircraft hangar with a curved corrugated iron roof. The walls are painted pale blue and have pictures of the saints and Jesus and Mary hanging on them. There are rows and rows of wooden benches and then at the front a large altar with a statue of Christ on it. It does feel very much like a church. In fact the atmosphere there is what strikes you immediately, its so serene and calming with lovely music playing gently in the background. Any fears or worries I had were instantly washed away.

Ana and I booked in and received our numbers in the queue to receive healing, 126 and 127, so we knew we had quite a wait ahead of us. But, apart from the hard wooden benches which were pretty unforgiving on your bottom, I was perfectly happy to sit there in that lovely peaceful place.

We were dressed all in white again as were the people who 'work' at Tupyara - the ladies looking very much like nurses with long white dresses on and a small white cap and the men in white trousers and shirts.

The service started with all the people who worked there forming a large circle - there must have been about 50 of them - and saying prayers, singing hymns and preparing themselves for the healing session. All in Portuguese of course but it was wonderful and entrancing to watch. This took about half an hour and then suddenly they all disappeared through a door leading behind the altar and the names of the 'patients' to be healed started to be called out. One by one the patients also disappeared behind the altar and I was quite surprised how quickly the time passed until my name was called. In Portuguese I am 'Jeanie Katereenie' - which is lovely isn't it?

I walked down and took my place sitting just outside the door which leads behind the altar. Ana quickly followed and interpreted what a 'nurse' was telling us in preparation for our healing.

"Have faith, pray for what you wish whilst being healed"....she repeated over and over.

Ana and I were called in by another 'nurse' - the room behind the altar was dark and much bigger than I expected with beds lining both sides, some with patients on with nurses standing by them, some empty. We were sat next to a set of double doors which opened every few minutes or so as another patient was wheeled out on a trolley to be taken to their bed. Everything was very calm and peaceful and I felt completely at ease. A nurse took my shoes, bag and glasses off me and a man in white then said some prayers over me - Im not quite sure what he said but his manner was so caring and compassionate. Then the double doors opened again, another patient was wheeled out and Ana and I were called into the 'operating room'.

Operating room is exactly the right word for it - it was just like a large operating theatre with a table in the middle for the patient to lay on. All the 'nurses/doctors' wore face masks and formed a circle around this table, holding hands as they prayed. But it was very dark in there, the room was lit only by a small greenish light, just enough to see what was happening. Ana went first, climbing onto the table, being covered by a white sheet and then prayed over for about 20 seconds. Then she was lifted off onto a trolley and wheeled out - and it was my turn.

Until the moment I climbed onto the bed and lay down I thought I would be praying for a cure for myself. After all, thats why I came here to Brasil wasn't it? But the moment the circle formed around me from somewhere, I don't know where as it wasn't a conscious decision, I prayed that 'the time I have left to do good for all' The words just jumped into my mind from somewhere.

The prayers around me seemed to go on much longer than for Ana's - I felt a tingling in my toes and fingers for a split second - then I was lifted off the bed, onto a trolley and wheeled out.

The next thing I knew I was waking up on one of the beds with a nice nurse wiping my tears away - I had been crying but goodness knows why, I wasn't sad or frightened.

3 nurses were fussing around me talking to me in Portuguese (despite having been told I didn't understand) and Ana was nowhere to be seen - but I felt they were reassuring me. They kept rubbing my arms and holding my hand. Eventually 2 of them helped me to my feet and led me to another smaller room where Ana was sitting waiting. After a short time in there we left through the door next to the altar - and that was that. I have a bottle of blessed water to drink over the next few days and instructions to pray again next Wednesday night.

Altogether it was an amazing and uplifting experience. I don't know what happened in there but something certainly did. It's hard to describe in words but it was an experience I will never forget.

Why didn't I ask to be cured?

I have no idea - but I do know I asked for the right thing.

Air France flight missing.......

An Air France jet carrying 228 people from Rio de Janeiro to Paris lost contact with air traffic controllers over the Atlantic Ocean, an Air France official said Monday. Brazil immediately began a search mission off its northeastern coast.

Air France Flight 447, an Airbus A330, was carrying 216 passengers and 12 crew members, company spokeswoman Brigitte Barrand said. The flight left Rio on Sunday at 7 p.m. local time.

The plane disappeared about 190 miles (300 kilometers) northeast of the coastal Brazilian city of Natal, near the archipelago of Fernando de Noronha, a Brazilian air force spokesman said. The air force began a search began Monday morning near Fernando de Noronha, he added, speaking on condition of anonymity in keeping with air force policy.

The region is about 1,500 miles northeast of Rio.

An official with France's transport agency said contact with the plane was lost at 0220 GMT Monday (10:20 p.m. EDT Sunday). The official was not authorized to be named according to agency policy....

Just to let you all know I'm still in Rio and wasn't on this flight.

It is however the flight I will be catching tomorrow evening - the 7pm AF447 to Paris.

My thoughts and prayers are with the passengers and crew on this flight.