Monday, 28 January 2008

Lumps and bumps....

We arrived at Christies a little late on Monday morning due to the awful weather.  Torrential rain, flooding everywhere, and we were stuck in a queue on the M6 for over an hour.  Not that I minded much - it was delaying the inevitable for a little while.

Twice they attempted to insert a PIC line into my left arm - and twice failed.  Which left us with a little problem as my right arms veins are still out of action.  There was no other choice but to go for a Hickman line on the left side of my chest.  This is a pretty unpleasant procedure.  The line goes into your neck then comes out of your chest in a sort of a loop.  There is a lot of pulling and pushing, all guided by ultra sound but fortunately no real pain, just discomfort.  Anyway eventually it was in, and working, and I was left with a length of white tubing coming out of the top of my left boob.  So it was back up to the ward to await my first dose of IL2.

Martin went home before all this was completed.  The weather was getting worse and the last thing either of us needed was him stuck in traffic for hours.

I dont do well on my own.  Without the support of family and friends I shrink and turn inwards.  Lovely as the nursing staff are they cant replace the presence of your family and comfort of your home surroundings.  Human relationships are the most important thing we have - without them we are nothing, this is something I have come to appreciate so much over the past year.  The strength you have as a person is very much dependant on that which you derive from those around you.  So again, I felt very lonely.  And alone.

Prof H popped in with a big beaming smile, which is unusual for him.  He pronounced himself very pleased with my results and very optimistic for a complete response this time.  So that gave me a huge boost.

And so it started.  And I have to admit that it wasnt so bad this time.  The side effects were all there ofcourse but this time I seemed to romp through the first 4 doses really quickly.  Then came the usual problems with my temp and blood pressure.  One far to high, the other way too low and it took 12 hours before I could have dose 5.  By this time I had galloping IL2 diarrohea and the constant leaping in and out of bed doesnt help your BP to settle.  So it didnt.  16 hours later it was still way too low for me to have another dose.  By this time it was Friday, doesnt time fly when you are having fun, and it was decided to call it a day.  5 doses this time - not bad but not brilliant.  I just hope its enough.

Martin arrived at lunch time to take me home, things went very smoothly and I was tucked up in my own bed by 3pm.  And thats when it really started to take effect.

Late Friday evening I noticed the left hand side of my face was very swollen.  Not just 'IL2 bloated' but hard with little lumps under the skin surface.  Then it moved around to the right hand side.  I took some Piriton as I was convinced it was some kind of allergic reaction and went to sleep.  And woke up at 3am literally covered in these hard itchy lumps.  All over my back, under my arms, in my hair line.  And I felt like my skin was on fire.  I paniced slightly them calmed down as I realised it had to be some kind of allergy similar to the 'itchy skin' I had previously.  I took more Piriton but sleep was impossible so I paced the floor for a few hours rather than tossing and turning in bed and disturbing Martin.

The lumps eventually went away but kept popping up in other places all day on Saturday but I think the Piriton was starting to have some effect as it wasnt as bad.  In the meantime I still had diarrohea and was being sick - so it was a pretty miserable time all round.  Sunday I felt a little better and finally managed to sleep - almost all day - which was so nice.

Today, Monday, Ive woken feeling much brighter.  My skin still feels 'weird' - sore and itchy and very sensitive, but at least no lumps today.  My face has started to peel again so I look like an extra from The Mummy - but Im starting to recover, slowly.  I may even try eating today, which will be a novelty.  Im living on a veritable cocktail of drugs right now to control the itching, diarrohea, pain, sickness.  If you held me upside down by my ankles and shook me I would rattle !

So all in all its been another horrid episode - on Saturday I was swearing I would never, ever have any more IL2.  Today Ive resigned myself to the fact Im going back in next Monday.  And hopefully by the weekend Ill be determined to give it my best shot again.  This is a war that still has to be won.


Sunday, 20 January 2008

Back down to earth.....

My birthday was a strange day - nice but strange.

I had a weird sense of unreality all day.  I know I should have been ecstatic, over the moon, jumping for joy, but I wasnt.  I guess after living under a death sentence for so long it takes a while to get your head around the fact that (God willing), you will almost certainly live for a good few years yet.

And see my daughter married.

And see more grand children (hopefully in that order !)

And enjoy Martins retirement and do all the things we planned to do.

Nothing is definite yet.  Nothing is guaranteed, especially in regards to kidney cancer, but I have a real reason to be optimistic now.  IL2 is working and although the word 'cure' is hardly ever used 'long term survival' is.  Long term being over 10 years.

So everything has changed and its taking me a while to adjust.

And ofcourse in the meantime I still have at least one, and most probably two, cycles of IL2 to endure.  The thought of it still fills me with dread.  Im not ashamed to say Im scared.  Apparently a lot of patients refuse further cycles of IL2 - and in a way I can understand that.  But to me that would be giving in - and Im way too stubborn to do that. 

So Im off to Christies again tomorrow with the thought that however tough IL2 is on me - its a hell of a lot tougher on the cancer Im fighting.


Thursday, 17 January 2008

A Future....

Today is my Birthday.....

And yesterday I had the very best birthday present I could ever have wished for.

It didnt have a very auspicious start, I had to go the Anti Coag clinic in the morning to have some blood taken - and desperately trying to preserve the good vein in my left arm in the hope I would need it for a PIC line next week, it took the phlebotomist 3 attempts to get some.  My veins, or rather the lack of them, are getting to be a standing joke now.

We set off in plenty of time for the dreaded drive up the M6 and it was a good job.  The weather and traffic were awful and in the end we arrived just in time.  Not that we needed to have worried, all the clinics were running 2 hours late.  This is very common on a Thursday afternoon apparently and most of the 'regulars' turn up with sandwiches!

I had some more blood taken, was weighed (I darnt say how much weight I put on during our holiday) and we sat down expecting a very long wait.

It was only about 20 mins later that we were called in to see Prof H but by this time I was virtually shaking with nerves.  Andrea, his nurse was there too.  He didnt keep me waiting any longer and launced straight into my results....

"Well, IL2 is working - and its working really well"

I just burst into tears - which confused Andrea a bit who asked if they were tears of happiness !

Prof H carried on....

"The tumour on your lung has gone.  Completely.  Of the two on your lymph nodes one shows 'significant' shrinkage, the other shows shrinkage"

Im still speechless.

"So lets give it a good blast this time and that should finish the job"

And that was that.  Just a few small things to sort out, putting me on Clexane injections instead of Warfin, which I can do at home.  Deciding to stick with trying another PIC line and not going for a Hickman.  Both Prof H andAndrea looked really happy, it must be fantastic to give this type of news.

" We will see you on Monday then Jane"

I dont think I had spoken more than half a dozen words - which is most unusual for me !

I was stunned....absolutely stunned.  I had really worked myself up to expecting bad news, I knew the odds, the small % of patients who benefit from this treatment, the nasty insiduous nature of this disease, and I was prepared for the worst.

But its worked.  And its worked really well.  And its continuing to work - IL2 carries on working for several months after youve had the treatment.

And today is my Birthday.....which seems so appropriate.


D Day.....

Today is the day I find out if IL2 has worked...or is working.

I cant believe how nervous and stressed I have felt over the past week.  Usually Im pretty relaxed and take things in my stride but this time the implications of these results have really preyed on my mind.

If it has worked, or is working, I will definitely be back in Christies on Monday for another cycle.  Which is good.  Really it is.  Or at least Ive been trying to convince myself it is.  Trying to step back and see the bigger picture.  But all I see is another week of lying in bed, feeling absolutely dreadful and going loopy.  Or worse.  Hopefully if the results are favourable that will give me a boost and the determination to stay positive.

My appointment isnt until 4.30pm - so I have all day to worry a bit more.

Still, there is a very nice looking pub just outside Christies and Martin has promised me that, whatever the results are, we can hit it as soon as we leave for a few glasses of something.  For me anyway, he is driving !


Thursday, 10 January 2008


I cant sleep.

I have my CT scan later this morning and its really playing on my mind.  I guess its because this is such an important one - the one which will show whether IL2 is working or not.  Ofcourse I wont get the results today.  And others will know before me, which I find a bit irritating.  Someone else will know the path Im about to take before I do and that doesnt seem right really.

As Guido pointed out it is a case of 'the lesser of two evils'

Either IL2 is working and Im due for my next cycle in 10 days time.

Or it isnt - and its back to Sutent and praying it works and buys me some time.

And yesterday I had some news which could indicate it isnt working.

I went to see Dr P and Sarah, just for a routine check up really.  To see how my arm is (its much better) and how Ive recovered from IL2 last time.  They put us kidney cancer patients in with the testicular cancer patients as there arnt enough of us to justify our own clinic.  So I was sitting there with a group of men.  The only woman.  I wanted to stand up and announce "I havnt got any testicles!!" - but as a friend pointed out most of them could probably say the same !

 Im almost back to normal, about 95% I would say.  My skin is still a bit weird, still itchy at times and peeling (although that could be due to the tan) and my teeth hurt.  They are incredibly sensitive to both hot and cold.  Sarah said its probably my gums more than my teeth and as long as it doesnt affect my eating (which it certainly doesnt!) then there is nothing to worry about.

But I have a new lump.  On my face, next to my nose.  I first noticed it before our holiday and it isnt very big, about the size of a pea, and it hasnt grown.  I thought it was a spot and ignored it.  But recently Ive noticed a web of tiny thread veins running to and around it.  And kidney cancer has a very rich blood supply.  So you can see what I was suspecting - and after examining it closely that is what Sarah suspects too.

So now Im worried its an indication the IL2 hasnt worked.  I wont know the results till next Thursday so Ill probably be a gibbering wreck by then !

Its silly I know, but you seize on the smallest things, convinced they are significant.  The very best indicator is my general health, which is good.  Im eating well, not in any pain and my 'performance status' remains very good.

So its back up the M6 today with 'Lewis' - after his recent driving experiences in Rio Im sure he will shatter his personal best time !


Friday, 4 January 2008

Still shaking the sand from my shoes....

Cat and Ed enjoying the surf


......and Ive just heard from Christies.

My CT scan is booked for 11th Janurary - thats next Friday.

And if the result is favourable, ie there is shrinkage of the tumours or no progression in their growth, then Im scheduled for my next course of IL2 on 21st Janurary.

Just over 2 weeks away.

Just the thought of it fills me with dread......

I shall need another holiday !.....haha



Thursday, 3 January 2008

And finally.....

Anas Grandfathers beautiful garden.

Our last evening in Brasil was New Years Eve.  And seeing the fireworks on Copacabana was going to be one of the highlights of our stay.  I wish I could show you pictures of it but Im afraid I wasnt there - I didnt make it.  This was when I finally discovered my limits.

On several occasions during our holiday I had felt pretty exhausted, well it was only a couple of weeks earlier that I had been completely bed bound so I guess its not surprising.  The heat didnt help either - in the 40s during the day and not dropping below 30 at night.  My feet, ankles and hands were swelling up alarmingly by the end of each day and a number of times I really didnt feel well at all.  This came to a head on New Years Eve.  The area around the beaches is closed to all traffic so the only way to get there was on the tube.  This was packed, crammed with people going to Copacabana, and SO hot.  I was crushed in a corner behind Martin and after about 30 minutes I fainted.  There wasnt enough room to fall so I was just slumped against his back.  I came around after a few minutes but felt so ill that when we got off the tube the only thing I could do was get in a taxi with Martin and go straight back to Matts place.  The others carried on to the beach so they saw the fireworks, but poor Martin missed them - and apparently they were fantastic.  So that was that.  It couldnt be helped and maybe I had been overly optimistic thinking I could cope but it was very disappointing.  Being alone with Martin as the clock chimed 12 was very emotional.  There have been many times in the past year when I didnt think Id see 2008 and we just held each other and cried.  So I guess missing the fireworks wasnt that disappointing after all.  Im still here, and thats the important thing.

My final thoughts on Brasil?  South America is a continent that marches to the beat of an entirely different drum and it takes a while to understand this.  Nothing works the same as it does here.  Especially the airlines.  We had 4 flights cancelled, were delayed and finally re-routed via Paris on our way home.  And Catherines suitcase was lost and still hasnt turned up.  The poverty is dreadful, you cant trust the police and driving is a nightmare.  Everywhere you go there are bars on the windows and you have to be looking over your shoulder every time you go out.

But the people we met were so friendly and hospitable, the food was fantastic - the best meat in the world (dont go if you are a vegetarian, you will starve!) It was the most exciting, exhilerating, at times terrifying, different place Ive ever been - and yes, YES, I want to go back !!

Catherine, Edward, Anas Dad, Ana, Luke and Matt on Christmas Eve.

Samba school....

Salghiero with the Batteria on the balcony.

Ofcourse no visit to Rio would be complete without seeing the Samba.  In March all the Samba schools, which come from each favella, compete during Carneval.  Its not just the dancing, its the music and drumming (the Batteria) as well. And its taken incredibly seriously.  They practice religously every week. So on Saturday evening we set off for Salghiero samba school - which is held outside of the favella so is relatively safe to visit.  Yet again we were the only gringo faces there which caused some mild amusement, but everyone was really friendly and seemed pleased we were showing such an interest.  Catherine caused a bit of a stir with the local lads - white skin and red hair is very unusual there and she attracted a lot of attention.  Which just made her scowl (but secretly Im sure she loved it!)  As Martin and Edward loved it when the dancers came out in their skimpy costumes - Im surprised they didnt trip over their tongues !  They were very beautiful girls, wearing lovely costumes (tiny bits of string really) and any red blooded male would relished it.  The noise was incredible - we all left with our ears ringing for several hours. 


Beaches and shopping....

Ipanema beach.

Ipanema is where Catherine found shopping heaven.  You are provided with a deck chair and parasol and then sit there whilst the shops come to you.  I mean the beach sellers ofcourse.  In the course of a morning she bought 3 dresses, 2 kangas, a handbag, some jewellry, drinks, ice creams, pineapple, sandwiches and even had a henna tattoo !  I dont think the beach sellers could believe their luck, they were queuing up for her!  And it really wasnt expensive, the dresses were 25 Reals (about 6 quid)  It was however very hot.  On our return to Rio the skies cleared and the temperature shot up into the 40s.  The sun is so fierce there, we spent most of the time in the shade as our fragile northern hemisphere skins just couldnt take very long in direct sunlight.

Isla Grande

After a lovely Christmas spent with Anas family we headed south to the island of Isla Grande - which really is paradise on earth.  The rainforest runs down to the sea there.  Its quite a large island but with a very small town, or village, on it.  Just a few Pousadas, some lovely restaurants on the beach - and very persistant mosquitos !  Despite being covered in repellent which melted plastic, and sleeping under a mozzie net, it didnt stop the little buggers there and I ended up with about a dozen bites.  Which didnt help my itching problem.  But it didnt spoil our stay there either.  There isnt a lot to do really except relax and enjoy the peace and swim in the lovely clear water.  There are water taxis which take you to isolated beaches around the island, each of which has its own little beach bar so you are never far away from drink or food.

Martin on Isla Grande


Rainforest and rain....

Matt, Edward, Julia and Luke.

The next day we left Rio and headed up into the mountains, about a 2 hour drive, to a Pousada (small hotel).  Its surprising how quickly you leave the city and hit the rainforest.  I was under the impression that deforestation had cleared Rio for miles around but this simply isnt true.  There are even quite larges patches of it in the city itself.  The Pousada was incredibly beautiful, an 'eco lodge' set in a small valley with mountain streams feeding the pool with freezing cold water.  Which would have been great on a boiling hot day but when we were there it was raining.  In fact on our first night there was a terrific tropical thunderstorm.  Well it is a rainforest after all !  So I had 3 days to relax, breathe in the beautiful clear mountain air, and eat the lovely food provided.  It was just what I needed.

Matt and I at the Pousada.

The road to Rio.... a very long one.  36 hours long for us actually thanks to cancelled and delayed flights.  But we eventually arrived safely - to be met by my brother Matt, his wife Ana, and their children Julia and Luke.  I cant tell you how fantastic it was to see him again.  He looks so well.  And to finally meet Luke, who is the spitting image of him at that age !

We set off for Matts home and immediately hit the first of Rio's shocks - the driving.  All Brasillian men think they are Ayrton Senna - so it was fortunate I had my very own Lewis Hamilton to cope with it.  Honestly, the driving is scary over there - terrifying most of the time.  No rules, traffic lights are ignored.  We saw 8 serious accidents during our fortnight there, although one was caused by the driver being shot so I guess that doesnt really count !  Martin was amazing, how he managed to drive under those conditions Ill never know.  I was like being in a game of 'Grand Theft Auto'.

Rio is divided into 2 main areas - Zone Sul, where the beaches and all the posh hotels are - and Zone Norte, where most of the favellas (shanty towns) are.  Matt lives in Zone Norte.  Where 'gringos' are rarely seen and considered very exotic indeed so we sure raised a few eyebrows.  He lives in a lovely little area called Grajau, typically south american, with its own square and small park.  Its completely safe there due in no part to the presence of an armed policeman 24 hours a day.  But go 2 blocks down the road and its a different story.  So needless to say we didnt.

Violence is something you live with every day in Rio, even in Zone Sul.  There are 40 deaths a day from shootings in the city, some from robberies and some from the drug wars in the favellas.  Every house/apartment has bars on its windows, bars on its balconies, high fences around the outside.  It does feel as if you are under seige at times.  You have to carry 'robbery money' when out - and if challenged just hand it over.  Because if you dont, or put up a fight you WILL be shot.  The money comes in handy if the police stop you also - they are mostly corrupt and issue 'on the spot fines' which go straight into their back pocket.  And they are not averse to shooting people who annoy them either.  We heard gunfire on several occassions, in fact on Xmas day when we were sitting in a friends garden (surrounded by 10 foot high wall)  our conversation was peppered by automatic fire from a nearby favella.

The above is a picture of a favella, Citade de Deus (City of God) - obviously taken from a distance - you cant go in them, or even close to them.  Strangers tend to be shot on sight.

They are basically self build houses, with no electricity (unless hooked up illegally) and no mains services at all.  This is real poverty, where people dont eat unless they get the money to each day.  The majority of people who live there work, in very poorly paid jobs and its virtually impossible to work your way out of a favella.  It is also ofcourse the home of the drug gangs. who run the favellas, and are very scary very bad people indeed.  Millions of people in Rio live in these dreadful conditions with no social care at all.  The state schools are shut most of the time as the money for the teachers is 'milked off' by corrupt officials (most of the children in favellas have to work anyway) and public health care is very basic, if available at all.

Brasil is incredibly rich in resources, oil and minerals, and yet this wealth is shared by such a tiny segment of the population.

We really dont appreciate how very lucky we are living in the UK.


Home sweet home...

The above picture was taken the day after I arrived in Brasil - and it really shocked me when I saw it.  I look so ill still, so bloated and puffy.  I really didnt want to put it on here, vanity and all that, but I thought it important I did.  This is the reality of living with kidney cancer and under going IL2 - you look like shite.

In fact our holiday brought a lot of things home to me - body image for one.  I really thought at my age a few scars, big as they are, wouldnt bother me. And uneven boobs. And they dont at home.  But put me in a bikini on Ipanema surrounded by gorgeous women and I shrivel.  My self confidence has taken a huge knock as well.  Although I managed to do almost everything I found it physically and emotionally exhausting - and I certainly reached my limits on several occassions.

Dont get me wrong - we had a fabulous time - but its so nice to be back home in my comfort zone, where I feel safe and secure.  I shall write about our holiday to Brasil but this isnt a 'travelblog' <sic> - its about another kind of journey altogether......