Julia Roberts
Julia is a Polio survivor, having contracted the disease as a young child in the mid 1950’s. The inner strength she developed as a result of that experience is helping her to cope with her diagnosis of a rare form of blood cancer 10 months ago.
She is releasing her first book called ‘One Hundred Lengths of the Pool’ to share her unique story.
The interview with Julia Roberts was conducted on behalf of PatientTalk by Feven Iyassu
IYASSU: Welcome to this podcast on PatientTalk. How successful do you think Rotary National’s campaign End Polio Now has been?
MS ROBERTS: I think it has been very successful to this point. There is still a little way to go but it certainly raised awareness worldwide. They are running the world’s biggest advertising campaign on their website and the End Polio Now the ‘This Close’ campaign.
IYASSU: What are the core requirements to eradicate Polio?
MS ROBERTS: Well as far as I know what needs to happen to eradicate Polio is that a country where Polio has previously been prevalent has to be Polio free for three years. As I understand it I think India is in the position where they have been free of Polio for the last two years so they have another year to go and then they will be considered to be Polio free. There were only 205 cases of Polio diagnosed in the world last year so we really are that close.
IYASSU: So do you think it is an achievable goal?
MS ROBERTS: Oh most definitely. I think the hope is that it will be achieved by the year 2018 and I think with enough awareness it’s definitely achievable.
IYASSU: Can you tell us about your diagnosis and treatment of Polio?
MS ROBERTS: Well I don’t remember much about my own diagnosis because I was only a 14 month old baby. I do know from what my parents told me that I had been a happy baby and then suddenly became fractious and irritable. So my mum, as it was so out of character, took me to the doctor and what the doctor said probably saved my life because he actually said “she’s probably teething, if you think its Polio it’s not” and it had never crossed my mum’s mind that it might be Polio. She took me home, kept a close eye on me and three days later they had to call the doctor to the house because I was far from getting better, I got much worse and two hours later I was in an isolation ward in hospital.
IYASSU: Was there a social stigma attached to Polio?
MS ROBERTS: There most definitely was and I mean as I say don’t remember any of this but I can’t really talk to my mum without her getting quite tearful about the whole episode. It was very traumatic for my mum and dad and also my elder sister and brother. I do know that they were placed in form of isolation in as much as they weren’t allowed to go shopping because it is very contagious, so they weren’t allowed to go shopping. They had to order their groceries and have them left at the end of the driveway for a number of weeks after it was confirmed that I had Polio.
IYASSU: What were your first signs of CML?
MS ROBERTS: Well I didn’t really have any signs. It was strange really because I’d been writing my book “One Hundred Lengths of the Pool” for about nine months and also working at QVC full time. So I was feeling very tired but it wasn’t just tired I felt excessively fatigued almost like you can’t lift your head off the pillow. I really felt tired which was unlike me and I thought maybe I should just get a health check, I was coming up to 55, I thought I should probably get a health check and just make sure that everything is alright. So I went to have one of the 360 health checks and everything on the day was fine. I’m a fit person, I’m a vegetarian I eat pretty healthily, I don’t smoke, I drink very lightly. All the tests were fine on the day apart from one blood test. I had a raised white blood cell count and two days later the doctor who conducted the 360 check rang me and said “you’ve been advised to see a consultant haematologist as soon as possible”. And I asked him what he thought it could be and he said it could be any number of things including you might have an infection that the white blood cells are trying to fight off. He said, “but you’ve been advised to see the haematologist to exclude Chronic Myeloid Leukaemia” which I had never heard of, of course. But the moment you hear the word leukaemia you panic a little bit. Three days later I saw the consultant he did a bone marrow biopsy, sent it away and ten days after that I was diagnosed.
IYASSU: What was your first reaction to the diagnosis?
MS ROBERTS: Funnily enough I think, now with the benefit of hindsight I was in shock and yet at the time I was totally accepting. The only thing I said to him is could there be any mistake and he said no you have got the Philadelphia Chromosome which is what they test for when they do a bone marrow biopsy. You’ve got the Philadelphia Chromosome in 96% of your bone marrow, there is no mistake. Then I just said to him, ok so what happens now? When I was at the hospital they were quite shocked by my reaction because I didn’t cry, I was just completely calm but I think it probably did shock me more than I thought which I realised after a couple of months. After speaking to a friend of mine who’s actually a former Crystal Palace footballer who was diagnosed with this very same cancer ten years ago before the drugs were available that are now available and he had to have a bone marrow transplant and survived it. He’s been an enormous help to me actually, to have him at the end of the phone if I’ve needed to talk to him and I will be helping his charity that he works closely with, Leukaemia and Lymphoma Research, as soon as I feel well enough to.
IYASSU: What treatment path are you following and how effective has it been?
MS ROBERTS: Well fortunately for me there are lots of new drugs coming through in the treatments of Leukaemia all the time. I’m taking a drug called Imatinib which was the original tyrosine-kinase inhibiting drug which is a form of targeted of oral chemotherapy. So I was tried with that to start off with because they believe it to be the most effective although there are new drugs that are now coming through and had I been intolerant to that or it hadn’t worked for me I could have been changed on to one of the other drugs that are now available. But all the drugs have their own side effects and I did experience some not very pleasant side effects at the beginning of my treatment but now that my body’s got used to the poison I’m pumping into it, it seems to have calmed down a little bit.
IYASSU: What are your views on alternative or complementary medicine for CML in particular?
MS ROBERTS: The problem with CML as far as I understand it is that you have to stop the over-production of these immature white blood cells. The issue with CML is that a chromosome, the bottom of one chromosome, chromosome 9 and chromosome 22, the bottoms of those chromosomes have broken off and attached to the bottom of the wrong chromosomes. You’ve got an extra-long chromosome 9, no problem. A shorter chromosome 22 is the Philadelphia chromosome and that is the problem and it triggers your body to make these white blood cells in their millions, lots and lots and lots of them and of course they crowd the blood. So in terms of the treatment I’m having, what they’re trying to do is stop the production of the trigger that’s making these white blood cells, so as far as I understand that’s what needs to happen so I have to take these drugs. At the moment that’s what you have to do otherwise it’s still a killer. People still die from CML. But with regards to complimentary medicine, I’m not so sure about complementary medicine but I’ve certainly spoken to my Professor who’s one of the leaders in the field and he said to me – “although you may not feel like it one of the best things you can possibly do is exercise”. So although at times I haven’t been able to because I’ve been really, really tired on the medication I’m taking, the days I have felt well enough to go and swim 100 lengths of the pool or spend 40 minutes on my treadmill or do my Pilates, it actually does make me feel better. So exercise for me and drinking lots of water funnily enough.
IYASSU: What one piece of advice would you give to somebody who’s just been diagnosed with any kind of cancer?
MS ROBERTS: That’s a really difficult question because I think we’re all individuals. For me I think it was accepting that you have it. I remember walking out of the hospital, University College Hospital in London after the diagnosis had been confirmed and I remember going through my head “I have cancer”. It was just that thought, I can’t explain what that means to you when you walk out and somebody’s told you, you have cancer, whatever type of cancer you have you just are walking along the street and you’re thinking I’m different now I have cancer. And you cannot get it out of your head. But I think for me, the thing that kept me going was the acceptance of it – okay I have this now, I can’t do anything about it, I have this now, how am I going to deal with it? And I have a positive attitude in my life generally and I think that is what I would say to everybody who is diagnosed with cancer. You need to have a very strong family unit around you which fortunately for me I have. My family have been magnificent, but I think you have to have a strength of your personal character to get through this.
IYASSU: Brilliant thank you for joining us on PatientTalk.
In 1993, Julia Roberts auditioned for the role of presenter on a new television shopping channel called QVC. She had to ‘sell’ a mobile phone for ten minutes, then was handed a pencil to talk about for five minutes. Twenty years and more than 10,000 hours of live television later, she is the most recognized face on ‘Shopping Television’ and one of the nation’s most experienced TV presenters.
Julia started at QVC after appearances on Beadle’s About, The Price Is Right and Song for Europe with Cheryl Baker, as well as presenting for Crystal Palace FC, a club she is still passionate about.
Julia has had to battle hard in her life to get where she is today, after contracting Polio as a child. Initially told she may never walk unaided Julia was taught to swim at an early age to strengthen the wasted muscles. She has maintained her love of swimming throughout her life and it was whilst swimming her routine one hundred lengths of the pool, at the house she used to own in Spain, that she came up with the idea for the book.
Every length tells a story: her early childhood, her determination to become a professional dancer, her career in the entertainment industry and her struggle with psoriasis. The additional chapter that she did not expect to write, Chapter 101, is about her diagnosis in April 2012 with Chronic Myeloid Leukaemia.
Julia will be making a donation from the book sales and is also taking part in a sponsored 101 length swim with proceeds being split between Polio research to help eradicate the disease for good and help the approximately 120,000 people in the UK living with the effects of Polio and Post Polio Syndrome (PPS), a neurological condition, and Leukaemia & Lymphoma Research.
This charitable act comes at a time when latest figures show we’re in touching distance of eradicating Polio for good, with only 205 cases of naturally occurring poliovirus in 2012 compared with 650 cases the previous year. However, experts claim this is a now or never moment for eliminating the disease or we risk the virus re-emerging across the globe.
It was good to ‘stumble’ upon this post. There is little in the manner of first-person accounts of polio survivors, much less those with a diagnosis of PPS (Post-Polio Syndrome). It was through the opening of the Internet that I learned about it and that is my main source of information still. I am convinced it is what is plaguing me now and has been the cause of my deteriorating health over the last 20+ years.
I was less than 2 years old when I was diagnosed with polio and placed in a hospital ward in a children’s hospital in a major US city. My situation was much like Julia’s. I was an active, well-adjusted and well-behaved toddler one minute and the next I wouldn’t (or couldn’t) bend to put away some potatoes I was playing with on the floor while my mother prepared dinner.
Mother told me that before they could get me to the doctor the next morning, my back had stiffened and I was so bowed from the pain that my father could barely carry me in his arms. My parents were sent home scared to even think about what the doctors were saying; most of what they knew had been garnered from the news and the sparse media reports regarding the US President Franklin D. Roosevelt’s polio.
My mother has told me all she could think to say to me before they were told to leave was, “Mind the doctors and do whatever they tell you to do.” It appears that I did as I was told because the nurses and other attendants told my mother during one of her later visits that I would likely walk out of the hospital because I would push through the pain whenever they had to do any physical therapy or other manipulating with me and those children whose parents coddled them would not be as fortunate.
I can remember being told that swimming would be good for me, too. I danced tap and jazz as a child and really led an active life with little if any side effects that were noticeable. I saw a blind physical therapist for the first ten years after the diagnosis and his treatments were very helpful. It was in my mid-20’s that I began to notice shooting pain that went along the length of my right thigh and deep into my lower back when I did too much ballroom dancing. I began to notice more lower back pain that would arrive whether I had been physically active or not. Again, rather than rest, I would push through the pain. It was about then that the slogan, ‘No pain, no gain’ was popular so it seemed natural to keep going.
I’ve read that those of us who have what is referred to as Type A personalities and/or those of us polio survivors who pushed through the pain are the ones who now have to learn to live with and are limited by the effects of PPS. There is little that can be done for us, short of pain management and short bursts of physical therapy while we lose more mobility all the while.
Few of my doctors have known little more than what I tell them except for a Rheumatologist who has literally saved me from going insane. PPS is such an invisible disease and so difficult to diagnose except through our own testimony about having polio. I wrote to have my records sent to me a year ago and was saddened to learn that they had been destroyed because it was over the 50-year limit. It felt as if a part of my truth had been destroyed when the hard evidence of my history with this disease was tossed out. It was so difficult to realize that I had no proof other than my very shadowy memories and the deterioration that is slowly robbing me of my mobility more and more.
I have a good attitude and still find lots to be excited about in my life; however, there is great sadness on the periphery because there are things I wanted to do when I retired and my body is starting to let me know those will be things I will only be able to watch others do. My Rheumatologist put me on short-term disability a few months ago and told me then that I had worked longer than most people would with less pain than I have on a daily basis. I will be moving into retirement now on long-term disability and receive social security as a disabled person.
I will be 65 years old later this month and have been working and living with unrelenting pain for the past 20+ years. The pain causes much fatigue and that takes its toll on my body and spirit. It is difficult to do much after work and that has caused much weight gain and so the vicious cycle begins to take more of my life hostage.
There are times I feel like someone who has lost a limb and has dreams of dancing or moving like the limb is still with them. In my mind, I can dance, run, jump, and leap into a heap of laughter on the floor; only in my mind. My body is unable to do any of those things with any ease at all. I use a cane more each day and know it is less evidence of my disability than an aid to keep me active and mobile. I have rented electric scooters on long vacations with friends and use them when I go shopping now.
I want to live a long and full life. It is my hope that I have more to say about that than the PPS determines. I don’t believe it is mandatory that I push through the pain as I have done most of my life. I believe the pain is an indicator for me to know I need to rest and take it easy before doing anything else. Pain has become a barometer for my self care and I am willing to become good friends with it. After all these years of pushing against it, I am now learning to lean into it.