Sunday, 21 June 2009
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?!)
Wednesday, 17 June 2009
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.
Sunday, 14 June 2009
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?
Thursday, 11 June 2009
Thursday, 4 June 2009
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.
Tuesday, 2 June 2009
Monday, 1 June 2009
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.