Kidney Cancer - The Documentary.

When I was diagnosed a couple of years ago I knew very little about kidney cancer and I guess until our campaign in the press last year that was true of most people. In fact I bet the majority of people are still ignorant of the signs and symptoms of the disease so anything that serves to increase awareness both with the public and the medical profession is a good thing. A really good thing.

So last week when I received a phone call asking if I would be prepared to take part in a documentary about kidney cancer I only had to think for a couple of seconds before saying 'Yes!'

On Wednesday, the director, producer and PR representative of the company commissioning the documentary came to see me for a chat. I thought originally my part would consist of being interviewed somewhere in a studio - but no - I am to have a film crew here, at my house and following me around as I do my usual everyday stuff, for 4 days next week !

This has caused much excitement amongst the family and friends who will also be involved - a sudden surge in hairdresser appointments, and sorting through wardrobes accompanied by squeals of "Ive got nothing to wear"!!

On a more serious note though I'm really excited to be involved in such a project and feel a great responsibility to be representing kidney cancer patients. I really hope I can do us justice because we really deserve it. We have been a small voice in the cancer world until now and its time we were heard.

Spiritual Healing.

My brother, Matt, has lived in Rio for 8 years now. As I have described earlier in this blog life is very different over there. A short while ago I received an email from him telling me about a friend of his who was quite seriously ill and required an operation. Whilst waiting for this he visited a church in Rio and received spiritual healing - and to the amazement of his doctor was completely cured.

After this Matt visited the same church for a problem he had been suffering from for the past few years and his experience there led him to urge me to fly over and try it out for myself !
Spiritual healing is very much a part of the mainstream church over there and is accepted as much by both priests and parishioners.

Im very open minded about such things - so Im going. On May 19th. I shall be visiting the church Matt went to and also going to Brasillia to see Joao de Deus (John of God) who is a very famous healer there.

It can do no harm - Matt has described what happened to him - and I have nothing to lose.

Im not grasping at straws - I know the score. But the best western medicine can offer me is an extention to my life, and although its working brilliantly right now I feel its worth exploring other possibilities. At the very least I shall see my brother and his family again and have a lovely holiday in Brasil....and have something fascinating to write about in this blog !

Pins and Needles.........

When you get a call offering you a last minute cancellation for a CT scan you dont turn it down - even if it is on New Years Eve. So it was that at 12 I turned up at Selly Oak, still feeling queasy, and sat down in the waiting room to start drinking a jug of that vile contrast stuff. Ive realised its not just the taste that is awful, its the smell as well. Its a bit like a sweaty jock strap (yes I have smelled a few of those in my time). The temptation is to drink it as quickly as possible just to get it over with, but you have to drink it slowly, over an hour - its like torture.


This is the first time Ive been to Selly Oak for any of my treatment. Usually it is all carried out at the Queen Elizabeth where the Cancer Centre is. But Selly Oak is part of the same Trust so I guess it was inevitable I would end up there at some stage. Its also the hospital I worked at for 12 years and I was a bit nervous as I walked through the doors as a patient for the first time. I neednt have worried though - the place was so quiet, Ive never known it like that before. I dont think they expected many patients either because the place was FREEZING. Sat there wearing nothing but my sexy gown and socks (I wasnt going to take those off!) I was shivering. Can you believe the radiators were off? It was minus 3 outside and not much warmer in that waiting room.

Drinking the contrast was bad enough but there was worse to come. Ive often joked about my lack of veins since I had IL2 but the fact is its quite a serious problem now - as I found out. 3 doctors took nearly an hour and had 7 goes before eventually one managed to get a needle into a tiny vein on the back of my right hand. I felt like a pin cushion. And looked like one with bits of cotton wool stuck all over my arms. Because such a little vein is used when the dye is injected it STINGS like mad. I know these are minor discomforts in the grand scheme of things, numerous 'sharp scratchs' from the needles then the hot burning stinging going up my right arm while Im being scanned, but Im getting fed up of being hurt. The scan itself is no problem now. Im so used to lying in that noisy machine with a disembodied voice telling me when to breathe now, and its over in a few minutes.

So thats that now until I get the results, which wont be till 22nd Jan. when I next see Dr P. I felt a bit yukky after the scan, which is pretty normal, so spent the rest of the afternoon and most of the evening in bed - missing all the New Year celebrations. I dont really mind though - just waking up and it being 2009 is enough of a boost for me and Im starting to feel much brighter and more positive again.

So - whats in store for 2009 ? Well I have a BIG birthday coming up in a few weeks, and its Catherines 18th in February and I feel as if Im ready for another adventure. Not sure when or where yet or even how - there are so many places I would love to see.

Where's the loo ??

I was kind of hoping, expecting, to have an easy time this cycle. Im not sure why, maybe because I thought it would be only fair after last month. But yet again I have been plagued with diarrhoea. No matter how many loperamides I take I still find myself rushing to the loo, buttocks clenched, at least 6 times a day. Anyone who is unlucky enough to find themselves in my way on one of these sprints gets shoulder barged to the ground - Im expecting to be signed up by the All Blacks any day now ! And Im sure I should qualify for shares in Andrex !
That aside the only real problem I have right now is fatigue - and ofcourse that could be due in part to constantly being on the toilet. But this hasnt really stopped me from doing things. As long as I make sure there is a loo within sprinting distance.

On Wednesday I went to a preliminary meeting for the TeleHealth initiative - and came away with a bundle of reading material. The pilot scheme doesnt actually start until January so I have a few weeks to work my way through it - good job really because its full of 'NHS speak'.

Tomorrow it is the annual kidney cancer conference which is being held in Birmingham, so for once I dont have to travel very far. Dr. P is speaking on the care of kidney cancer patients as is a CNS on the side effects of Sutent - which could prove interesting for me, maybe Ill find another way of dealing with my 'running to the loo' syndrome.

Hmmmm......I do hope they have a loo just outside the conference hall !