Friday, 29 May 2009

Wot - no prints?

I've been trying to keep up with the news whilst away.  Most of it online seems to come from the US.  There was a report the other day of a cancer patient from Singapore who had been held at immigration on entering the US because he didn't have any fingerprints.  Apparently it is routine in the US. to take prints from everyone entering the country....I didn't know that!

This poor man was suffering from severe 'hand and foot syndrome' due to chemotherapy and the skin was peeling off his fingers.  So he had no fingerprints.  As Ive reported in the past my hands have at times been quite severely affected by Sutent and right now, although they arn't too bad, looking at them closely I have hard cracked skin on my right thumb, forefinger and middle finger, left thumb and forefinger.  And no fingerprints on them !!

Ive never noticed that before - good job I havn't travelled to the US isn't it?

Its a point to remember for all patients on Sutent.  If you are travelling abroad, even if not to the US, it may be a good idea to get written confirmation of your diagnosis, treatment and possible side effects from your Oncologist.  Just to be on the safe side.  I was given a card detailing all this by the Pharmacy dept. of the Cancer Centre which I carry at all times.

If I wern't a scrupulously honest person (shoves bag of swag down back of sofa!) I'm sure I could think of several advantages to not having any fingerprints !..

Thursday, 28 May 2009

Pirinopolis and Brasilia

We left the ranch before it was dark and drove the short way to Pirinopolis and our next hotel. Pirinopolis is a small historical town full of old colonial buildings and very bumpy cobbled streets. Again, by Brasilian standards, very affluent. We were staying in a beautiful old Pousada (small hotel).

The next morning, after negotiations which took the form of we girls telling Matt we wanted to go shopping that afternoon, we set off for Santa Maria waterfalls. It was over an hours drive up a long uneven dirt track and then a long, hot walk down a path through scrub/grass land - but SO worth it when we got there. South American waterfalls are world famous and rightly so.. The water was freezing !!! But very welcome as it was such a hot day. Even in winter here the sun is very powerful and I had to cover my newly sensitive skin (or 'sensible skin' as Luke calls it) with factor 30 just for a paddle - then it was back in the shade for me whilst Matt, Ana, Julia and Luke swam. Thanks to Sutent I don't tan any more. My skin is pale and very sensitive and burns very easily now. So different from a couple of years ago when I could fry myself all day long and went the darkest brown !

It was heaven lying on a fine sandy beach watching the hundreds of butterflies that gather there - but as I said, very hot. Goodness knows what its like in summer.

Sunday morning we drove back to Brasilia to fly back to Rio. A long drive but in the daylight this time. Its been fascinating to see this other 'face' of Brasil, away from the rainforests and the beaches, the bits we see and hear about back home. There is so much more to this fantastic country and the more I see the more I fall in love with it and want to return time and time again. I want to see the wetlands in the south west on the border with Argentina, the north east around Natal, and also go deep into Amazonia where it borders Bolivia. You could spend a lifetime exploring this multi faceted country.

Im beginning to understand Brasil a bit more now and subsequently its not quite as frightening as on my first visit - although driving around Rio still has to be the scariest thing on the planet !!

Brasilia is a purpose built capitol city - like Canberra in Australia - and is very modern and very ordered. And for a modern city very beautiful. The architecture is outstanding. It was built in the late 50's/early 60's but still has a very contemporary feel. And as such just doesn't seem to 'fit in' with the rest of the country. Its as if someone had picked up Milton Keynes and dropped it into the middle of Brasil (a tempting thought but I wouldn't wish that on the poor Brasilians!)

I've started to get some pain the the large tumour below my right breast and it does feels bigger and harder, so I've started taking Sutent again, Cycle 13 !!

I've had a 12 day break and its been fantastic, I feel SO much better for it but its time to let Sutent start doing it's job again. I just hope it kicks in quickly so I don't have the severe pain I had a few weeks ago. I'm taking paracetamol at the moment which is doing the job and I really don't want to take anything stronger. Not whilst I'm here in Brasil.

I'll know how well Sutent is still working, or not, when I get the results of the CT scan I had just before I came away. I see Dr P. two days after I return home but I'm trying not to think or worry about that right now...(But ofcouse I am - its right there at the back of my mind niggling away)

Tuesday, 26 May 2009

Joao de Deus.

There are no signs directing you to Joao de Deus - you don't need them. You just follow the line of people dressed all in white down a small side street. This street looks pretty affluent by Brasilian country standards with lots of little shops selling white clothes, crystals, organic food did have a bit of a 'hippy' feel to it.

At the end of this street are large blue metal gates which are the entrance to the compound which consists of a cluster of bright blue and white buildings. It looks a bit like a school with an open courtyard in the centre. There is a crystal shop, a 'Farmacia' a cafe and a few other small buildings which had no sign on them. Matt and I collected our red tickets, which indicated this was our first time, and went and sat in the large open hall with everyone else. The white washed walls were covered in photos of Joao, prayers, and, right next to where we were sitting, a video was playing showing Joao doing 'operations'. It was more than a little disconcerting watching how he (apparently) pushes long forceps (a bit like Spencer Wells) up patients noses or stuck a knife in their eye.

By now it was 8am and the hall was packed with up to 80 people and more standing just outside. A series of 'volunteers' took to the stage and talked about the need for silence, meditation, to close your eyes but not to cross your arms or legs as the spirit doctors were now amongst us. We all stood and said a few prayers - the Our Father and Hail Mary were recognisable to me even in Portuguese - and then Joao himself walked in surrounded by his assistants carrying various covered metal bowls. He is a large man with longish dark hair and a very pale complexion.

He started telling of his childhood and how he discovered he could heal (poor Matt was having to translate all this for me). His voice was quite dull and monotone, not what I was expecting at all. He certainly doesn't possess the energy and charisma of a 'Billy Graham' type preacher. But Joao certainly had everyone's undivided attention - especially when he suddenly turned, and taking taking some forceps and a small piece of cotton wool from one of the metal bowls, inserted them right up a young woman's nose. It was difficult to see exactly what was going on as his hands covered her nose most of the time but when he removed the forceps, after wiggling them around a bit, the cotton wool was red. The young woman showed no signs of pain or distress at all during this procedure but afterwards was carried away in a chair. And Joao left too.

Those others scheduled for surgery that morning were told to line up and they disappeared into one of the many rooms at the back of the hall. After another half an hour or so of inspirational talk by more volunteers at last '1st timers' were called and Matt and I joined the queue leading out of the back of the hall. The first room we passed through was the 'crystal meditation room' with 30 or do people sitting in front of a huge crystal in silence. Off to the right of this was a small room containing what looked like operating trolleys - some of them with patients on apparently asleep. We followed our queue into another large room, again full of people meditating, where Joao was sitting at the end in a large chair. The queue wound slowly down the centre of the room as each person had a short 'consultation' with Joao. For some of them he scribbled something on a piece of paper and gave it to them. Then a volunteer was on hand to direct them to the next room Joao had 'prescribed' for them.

I was getting more and more nervous as we approached the front and when it was my turn my hand was shaking as he took it and held it briefly. He said a few words which Matt interpreted "Come back this afternoon" and that was it. We were ushered outside into the sunshine and given a bread roll and some grape juice. Matt and I were a bit baffled as to what had happened and why were we told to return in the afternoon (Matt had been told to come back too) when a nice friendly volunteer called Diego found us and explained that the right 'spirit doctor' wasn't there for us now - but apparently he would be at 2pm.

We drove back to the ranch a bit deflated, sat around in the sunshine watching Luke chase the chickens and goat, had some lunch and just before 2pm we set off again.

I had been getting increasingly worried about how I would react if Joao decided he wanted to stick some forceps up my nose or a knife in my eye - I was really NOT comfortable with the thought of either. Everyone else there seemed so at ease and relaxed, even the other '1st timers', was I the only one with a sense of disquiet and concern?

At 2pm we were back in the main hall which was again packed to the rafters. No Joao this time - but more preaching from the volunteers about silence and meditation. Another queue of people were called for their 'surgery' and finally, at 3.30pm, the '2 o'clock queue' was called. It was very long yet again and Matt and I were right at the back of it. Through the crystal therapy room again, some people were still there from the morning meditating, past the small operation recovery room which now appeared to be full, and into the main hall. Again familiar faces were still there from the morning. Joao was sitting in his big chair again. The queue was very slow as this time he would spend much longer with certain people - some only a few seconds, some up to 5 minutes. As they reached him a couple of people made loud long speeches on how Joao had cured them. Finally, after what seemed like hours, it was my turn again.

Joao held my right hand for a couple of seconds and said "Crystal therapy one time" as translated by Diego and he then led me into a small room with a few others where we meditated for about 5 minutes. Matt joined me shortly after (he had a MUCH longer session with Joao) and then we were shown outside again.

What an anti climax !

Here I am with terminal cancer and all I am prescribed is a few minutes meditating in front of a big crystal. Joao didn't ask, or seem to be aware of what is wrong with me. I felt, rightly or wrongly, that I had been shrugged off, especially when Matt told me what happened to him. Joao spoke to him for some time, asked his occupation and where he lived and then gave him a prescription (piece of paper with squiggle on it) and said he needed 12-15 special crystal bath sessions - and there is absolutely nothing wrong with Matt ! He was only there to accompany and translate for me ! (Actually Matt does have a sore toe right now but all that treatment seemed a bit excessive for that) We went and collected, and paid for, Matts pills from the Farmacia, which turned out to be Passiflora - a harmless herb - and drove back to the ranch where Ana, Julia and Luke were waiting patiently bless them.

So - my impressions of this experience?

I felt a huge sense of disappointment. I didn't expect some miraculous cure but I did expect a little more than a cursory glance.

Maybe it's unfair of me to judge after just one visit?

Maybe its because, despite Matt's translations, its difficult to fully engage in a process conducted in another language?

Maybe something did indeed happen and only time will tell?

Or maybe the point of it all just passed me by, after all I am a 'gringo'?

All I know is I expected to feel that something 'special' was happening in this place - and I felt absolutely nothing. I left with more questions than I arrived with and absolutely no answers.

Monday, 25 May 2009

Inland to Brasilia

Thursday afternoon we flew out of Rio to Brasilia, which looks very close on the map but takes an hour and a half to get there.
The mountains which surround Rio are young, raw and jagged and covered in rainforest - a narrow strip along the coast which are the remains of the great Atlantic rainforest - most of which has been cleared now. Flying inland this soon gives way to more gentler rolling hills. Brasilia itself is on a high plateau and the land is dry grassland/scrubland called the 'cerrhado'. Its cooler here inland during the winter but the summers are terribly hot with very little rain and outside of the city of Brasilia sparsely populated.

It was a long dark drive to our ranch style hotel in Abadiania where Joao de Deus lives. The ranch is in the most incredibly beautiful setting in a valley surrounded by hills and next to a small lake. I had my own little timbered chalet which was simple, but spotlessly clean - it was also a bit scary in the dark to be honest. There were all sorts of strange scuffling noises coming from outside during the night and I was imagining them to be a panther or something similar - in the morning I discovered the scary beast was in fact a goat ! (Actually it WAS pretty scary - it wasn't a friendly goat at all and butted Luke a couple of times)

We had dinner sitting outside under the stars - millions of them. The southern hemisphere has so many more stars than we have and with no light pollution in the country you can see them all so clearly. The country also has lots of creepy, crawly, flying, stingy, bitey things too so I sat there covered in insect repellent strong enough to melt plastic. It worked though. Nothing living dared come too close to me tempting though my lovely pale gringo skin must have been.

Dinner was typical Brasillian rustic food - bbq chicken, presumably one of the ones running around the ranch as it tasted wonderful - not at all like the chicken you buy from Tesco. Beans - a bit like baked beans but a million times nicer, rice and salad. Simple but very very tasty and also very healthy. All washed down with very strong, very sweet, very black coffee.

We were all really tired by then and as Matt and I had to be up very early to go and see Jaoa we went to bed.

Im still not sure how i feel about this - I am completely open minded but Im not sure Im totally prepared for what may, or may not, happen. Im still slightly concerned I may end up tied to a post with chicken entrails draped over me !

All joking aside I am pretty nervous, spiritual surgery is still a concept that is fairly alien to us in the west. And yet it is accepted and even used alongside conventional medicine here. Lets just see what tomorrow brings....

Thursday, 21 May 2009

Brasil bound......

"Gosh you're brave" has been the reaction of a lot of people when I told them I was going to Rio on my own.  Its certainly something I would have never considered a couple of years ago. But now my attitude to most things has changed, or maybe it's the fact that I have changed so much.  Some people, when diagnosed with cancer 'come alive' and that is definitely what has happened to me.  Im not sure brave is the right word - after all air travel is so easy nowadays (except when you get cancelled/delayed flights then it can be REALLY annoying - more of that later)  I think they are referring to the fact that Im doing it whilst ill.  Truth be told I feel fine at the moment - absolutely fine.  A week off Sutent has done me the world of good and apart from the tiredness, which never seems to go away totally, it just varies in degrees, I have no side effects at all.  So I'm going to try for a few more days off and start taking it again at the weekend.

One of the most surreal sights yesterday morning must have been me and a group of Chinese men together pouring over a Brasilian embarkation form - in Portuguese.  They didn't speak English, I don't speak Cantonese and my Portuguese is VERY limited.  But guess what? Between us, and a lot of the most peculiar sign language, we worked it out.  This was at the end of a VERY VERY long day for me - thanks to Air France.

On my original ticket I was to fly on the 6.30am to Paris and connect on the 10.30am to Rio.   Simple.  Except both the 6.30 and the 8.30 planes went 'tech'.  This means they had a technical fault and I missed my connection.  And the next flight to Rio wasn't until 11.30pm that night.  So rather than hanging around Charles de Gaulle airport all day and all evening I went back home and returned to catch the 5.25pm (except it wasn't - it was the 6.10 because it was delayed - are you starting to see a pattern here yet?)

When we eventually took off - 12 hours after I was supposed to start my journey - the flight was fine, very quick and comfortable.  France finally redeemed itself in my eyes in the form of the lovely CGD airport, it was actually a pleasure to spend a couple of hours waiting there for my connecting flight to Rio, which, amazingly, left on time.  We took off at 11.30pm on the dot.  Faced with almost 12 hours flying and absolutely shattered by now, I passed on the food, had a glass of wine, a sleeping tablet, and zonked out for 7 hours.

We landed at Rio bang on time again.  In fact it had been one of the smoothest flights I've ever been on.  Perfect take off and landing with hardly a jolt.  I guess thats because almost everything is automated now.  There is no need for more than 1 pilot - and a dog.  The pilot is there to feed the dog and the dog is there to bite the pilot if he tries to touch anything....haha !!

It took about an hour to clear immigration and collect my bag and then creep through customs, averting my eyes as I had a suitcase full of contraband (marmite and mustard and Cadbury's chocolate and McFly cd's)  and Im not sure how long a prison sentence the 'mule' gets in this part of the world!!

Matt, Ana and Luke were there to meet me and it was just wonderful to see them all again.  The sun was shining, it was 28 degrees, and yet the Brasilians were all wearing jeans and jumpers because to them its cold !

Still being pretty tired, and we are flying to Brasilia today, I had an early night....and was woken at 5.30am by the sound of helicopter gunships circling and firing on a nearby favella.....

I don't think we are in Kansas any more Toto.......

Monday, 18 May 2009

Rio bound....

My PC has died and at present is being repaired. This is what happens when you allow your teenage son to use it - supposedly for his homework !

Tomorrow morning, at the ridiculously early time of 5am, I leave home to travel to Brasil. Im flying from Birmingham via Paris so it's a pretty straightforward journey - or it should be anyway !

Hopefully I'll be able to blog from Matts computer when I arrive....

Tchau !!

Wednesday, 13 May 2009

Jane's Story.....

Ask anyone who knows me well and they will confirm there have been very few ocassions in my life when I have been lost for words - but yesterday I saw 'my story' on film for the first time and I was speechless - it quite literally blew me away.

In the space of 20 minutes Daniel and his team have captured the last 2 years of my life and presented it beautifully. I can't tell you how proud I feel to be a part of this documentary, its going to be an incredibly powerful tool, both now and in the future, for raising awareness of kidney cancer and the new drugs used to treat it.

For me ofcourse it was very emotional watching it and it made me cry - not because it's sad, it isn't, it's a story of hope. No, I cried because this documentary says more than a million words I could type on this blog ever would.

It humanises our condition. No longer are we simply facts and figures and statistics - we are real people with families and friends and a life - a life which with the help of these new drugs can be extended and lived to the full.

The documentary will be launched at the end of July and will initially be available to view online.

(Mental note to self - I MUST go on a diet. I know the camera is supposed to put 10lbs on you but I dont remember having 5 pointed at me !!)

Friday, 8 May 2009


I kind of suspected there would be a price to pay for my feeling so well, and doing so much, during the weeks filming. And oh boy I wasn't wrong. The past few days, during week 4 of Sutent, have possibly been the worst ever.

I spent them either sleeping, running to the loo or being sick. On Tuesday night I felt so ill I thought "Ok, this is it" I'm pretty sure Martin did too as he was fussing and fretting not knowing what to do. It was an horrendous night with all sorts of thoughts running through my head such as "I havn't done this or that yet and Im not READY"

I havn't finished my memory boxes for the children yet. I havn't finalised my funeral plans. And I need to do these whilst I'm well - its no good waiting till the last moment.

On Wednesday morning I woke feeling a little better and yesterday I had an appointment with Dr P. It was very quiet again, eerily quiet and I only had to wait about 10 minutes to see him. My blood results were normal, absolutely normal. He said I was looking really well, and to be honest by then I was feeling much better. So we put this blip in my general health down to being over tired, not eating much and taking my drugs on an empty stomach - NOT a good idea!

However we did discuss the fact that I have been taking Sutent, at the highest dose, for over 15 months now with only a weeks break between cycles. In effect this only gives me a few days a month 'Sutent free'. The standard break between cycles is 2 weeks to allow your body a bit of a rest so we decided that this month that is exactly what I will do. Have 2 weeks break. Ofcourse I'm running the risk of my tumours growing during the second week, like they did before, but I can monitor them and if they show signs of growing, or become painful, start taking Sutent again.

2 weeks off !!
Its like a birthday present !
And just in time for Brasil !

And in the meantime I'm getting on with those funeral plans......

Saturday, 2 May 2009

Thats a wrap !!

Saturday was the final day of filming. Caroline and I went into Birmingham to the Mailbox to do a bit of shopping - well, mainly window shopping due to the prices in there!
Daniel and the crew filmed us mainly from a distance so we just wandered around, looking in shop windows and gossiping away. The sun was shining again, what a glorious week we had weather wise, so we sat outside having coffee and were interviewed together. This was quite emotional - talking about how we had been best friends for 33 years and how she felt about my illness. There were a few tears but also a lot of laughter which kind of sums up Caroline and me.

We all returned home for a bit more filming which included Martin, dressed in his best gardening gear, putting up his bean sticks ! Then finally, at 4pm, Daniel announced "Thats a wrap!" and the crew, along with their mountain of gear, piled into their van and were gone. It was quite sad saying good bye to them - for 4 days they had been here as part of the family and we had all got used to them being around. It even seemed quite normal for Jose to dive into my cleavage and fiddle with my radio mike and bra !

It was only when they left that I realised how exhausted I was - I think I had been running on adrenaline. At first I was so worried about doing a good job in representing KC patients but, with Daniels help, soon relaxed. In fact we all had a lot fun making the documentary - In the end I loved being a 'film star' for a few days and all the attention we got - people coming up and asking if we were filming 'Wife Swap' or 'Secret Millionaire' !