You have the option to either watch the video ‘Jane’s Journey’ (18 minutes) or read the transcript provided below. You should then attempt the Unit 1 Test.(Note: Kidney Cancer UK was previously the James Whale Fund for Kidney Cancer)
You might also like to visit Jane’s online diary here:
http://a-journey-of-another-kind.blogspot.com/
Part 1
Part 2
Transcript
Jane outside in the garden with her granddaughter
To be given a treatment and for it to work and to know that your life is going to be extended. That you’re going to have this special, precious time…. It’s like having all of your Christmases and all of your birthdays come at once. And life opens up again for you.
Jane outside her home with her family
Hello, my name is Jane. This is my eldest son, James. My daughter with the red hair, Catherine, and my “baby”, Edward.
This is my little granddaughter Grace, and her mother, Sarah.
This is my husband, Martin. He’s the one with the grey hair.
Jane at home in her lounge room
I was diagnosed at the end of January 2007. And it came completely out of the blue. Prior to that I had been perfectly fit and healthy. And then one day I just collapsed in pain and was rushed to hospital. An ultrasound showed up a large mass on my left kidney. And this was the first time that kidney cancer had ever been mentioned to me.
I had a nephrectomy a short time afterwards. And it was only then that I was told that I had advanced kidney cancer and that it had spread and the full implications of what this diagnosis would mean to me.
I was told that the prognosis was very poor.
Jane reading from her online diary (blog)
Sunday, 18th March 2007. I knew I was alive because of the pain that I was in. Not so much from the wound I had (which was very impressive), but from the fact that I had had a rib removed and a chest drain put in. Every part of my body seemed to have a tube going in or coming out. There were bags of fluid and blood dangling above me, and pumps bleeping away.
I was as weak as a kitten, could hardly lift an arm, but none of this mattered because I was alive and my recovery was now very much down to me.
Jane at home in her lounge room
I’d started blogging two and a half years ago now. I found it a really enjoyable, interesting way of communicating, and informing people of what was happening.
The extra time that you are given if you are lucky enough that one of these new treatments works is so precious. It’s a really privileged position to be in. I know that my time is limited. And I think about my little granddaughter, Grace, who is three and a half now, and will hopefully have some memories of me now.
It’s difficult to explain how important this time is. I don’t like to think of my family without me. I want to leave them knowing that I have done the best that I can. That they have some happy, happy memories.
I want to show them that even when you are very ill, even when you know that you are probably not going to live for a lot longer, that life can still be good. That there is a positive to be gained from every aspect. To make the most of every single moment. Even in the small things that you do. Not just in the big things that you do.
Jane at a hospital appointment with the nurse
Nurse: Hi Jane, how are you?
Jane: Not too bad at the moment. I need to have my blood pressure checked please.
Nurse: So is everything going well?
Jane: Yes, everything is going really well at the moment.
Jane at home in her lounge room
After my nephrectomy I was given the results of my histology and was told that my cancer had in fact spread. My consultant explained to me the options that were available to us. And they seemed pretty limited really.
There was the chance of a response from high dose interleukin 2. Or there were the new drugs that had just come through, which were basically life-extenders. They wouldn’t cure the cancer, but there was a chance that they would extend my life.
Jane at a hospital appointment with the nurse
Jane: I’m going off to Brazil again soon to see my brother again. On my own this time.
Nurse: You’re very brave.
Jane: Hmmm. It’s going to be quite an adventure.
Nurse: So you’re leaving the family to fend for themselves, are you?
Jane: Yes for two weeks. I am sure the pizza man will be on redial every night.
Nurse laughs.
Jane at home in her lounge room
Caroline has been my best friend for years now. We’ve known each other since we were seventeen. She has been my “rock”. She is the one person that I can tell anything to. Even things that I wouldn’t necessarily tell Martin.
Jane and Caroline at a cafe
Caroline: We talk about her not being here and stuff like that, but I tend to forget you as well know. When we went on a cruise I was making you (Jane) climb up and down all of those stairs. I mean it was like 28 degrees, which I think is really hot, in Rome and I wondered why Jane was miles behind the steps and I was running up thinking she can’t do it. You do tend to forget, because Jane is just Jane to me. I don’t think of like, is this Jane with cancer. Knowing something, and then the reality of something, is very different.
The reality of Jane not being here… well, that is going to be hard. When she is not here anymore then that is going to leave a big hole in my life. I love Jane. She is one of my closest friends. That is going to be really hard.
Jane at home in her lounge room
It’s like ripples in a pond. It just spreads out, and touches the lives of anybody that you are connected with, or that you know, or that you are friends with.
Jane’s husband Martin in his garden
I just sat a long time on my own thinking, “what’s going to happen now?”. It is very, very hard to comprehend. But over the weeks and the months you tend to acclimatise your mind to what’s going to happen.
And then each time we go into another month and then another two months, and you think “well, thank God, we’ve had this time and she still looks well, let’s go for another month”. You can only take in so much of the future. Someone said to me at work the other day, “where are you going on holiday next year?” and what can you say? “it depends on whether Jane is still alive?”.
Jane at home in her lounge room
Your initial reaction is that you want to rush out and do everything all at once. A form of panic sets in and you think, “I’ve only got so long left and I want to do this. I’ve got to fit it all in”. You start to think about doing things that would never have occurred to you before.
Jane at the family car
We are off to Silverstone today and I am going to be driving a Lotus [motor car] around a track. It’s something that I have always, always wanted to do. It’s been on my wish list for quite a while now. I am really excited.
Jane at the Silverstone racing track
I’ve got a ‘Bucket List’ – things that I want to do before I ‘kick the bucket’. And I am ticking them off, one at a time.
Jane at home in her lounge room
I’ve been to Pompeii. I’ve been to Rome, and I’ve been to Brazil. And I’ve been to a lot of places. Experienced a lot of things. Had some fantastic times with my husband, and with my children. And formed a lot of happy, happy memories for the future. So in the past twelve months I have done an awful lot. And I have plans to do an awful lot more as well.
Jane’s husband Martin in his garden
When she is not so well, I hope everyone pulls together. And I am sure we will, but I think that Edward [Jane and Martin’s son] is the one that is going to … I need to take special care of as he said, “I just want to enjoy her while she is nice and like this, and I don’t want to think of anything else”. And that is how we have kept it. We don’t hardly ever talk about it.
Jane reading from her online diary (blog)
Monday, 23rd February, 2009. There has been much coverage of late in the media of Jane Goody’s [a UK celebrity] terminal cancer diagnosis and much comment on how she is dealing with it. I’ve read several requests for her to die with dignity. Why? Why should we, those with terminal cancer, die with dignity? What’s wrong with shouting and stamping your feet and complaining at the injustice of it all? Or what is wrong with wringing every last bit of enjoyment out of life before we finally ‘pop our clogs’ [die]. And, yes, fairly publicly if we want to. We are not dead yet after all. What’s wrong with using your situation to highlight awareness of your particular disease?
Or maybe even to campaign to help others who in the future may be in the same position as you. The truth is, of course, for many people seeing or reading about someone who is approaching the end of their life is an uncomfortable experience. It reminds them of their own mortality, especially if it is a young person. Death it seems is still the final taboo. Especially an impending one.
Some would prefer us, once we have been given that final sentence, once that dreadful word, ‘terminal’, has been used, to retire behind the sanitised walls of a hospital or hospice and die quietly, and unobtrusively. That is supposed to be dignified. But what dignity is there in that? What dignity is there in simply giving up? Accepting your fate, quietly acquiescing for fear of upsetting someone. True dignity in death is doing what you want to do in your final days with your family and loved ones. Maybe quietly, maybe going out with a bang. But it must be what you want, and not what others expect of you.
Jane with her consultant looking at a scan in hospital
Consultant: This is probably the most noticeable lesion. It hasn’t changed very much since your previous scan. The disease has remained stable since you started your treatment.
Jane: That’s great.
Consultant: I know that this is what you wanted to hear.
Jane: Yes.
Consultant speaking to the camera
The significance of early diagnosis for kidney cancer is extremely important as for any other type of cancer. If the cancer is caught very early then with an operation we can get rid of it and the patient is cured. However if we detect it too late, when the cancer has spread then we can only contain it.
Treatment of kidney cancer has been revolutionised over the last two years. I am optimistic because I know that there is a stream of new drugs being tested for kidney cancer.
Jane at home in her lounge room
All the new drugs, all the new treatments that are coming through, although they may seem very similar on the surface, are extremely important because they give us patients hope that we can turn what is now classed a terminal illness into perhaps into a long-term chronic condition. So that when one treatment fails to work we can change to another one and then change to another one, and extend our lives even more. So, going from a state where thirty years ago there was virtually no treatment at all for kidney cancer, and now we have all of these new drugs coming along, online one after another. I am very positive and I am very hopeful for the future now. I feel as if I have got a future now. Twelve months ago I really didn’t feel like that.
I think it is very difficult for anybody who isn’t in my position to appreciate just how valuable, just how precious, this extra time that I have been given is.
I think I would like, I wish that people could come and see me at home with my family, see me running my garden with my little granddaughter. To see just how, ordinary, everyday life carries on now, here in my house.
On May 30th, 2010, Jane’s Journey came to an end in St Mary’s Hospice in the UK. Jane left behind a beloved husband and family.