Date Description
June 6, 2005 Notice: (From the New York Times) JONES-Juliet Nicola. 35, died on Friday, June 3, 2005, after a three-year bout with cancer. She was born in Amersham, England, in 1969, to Richard and Dorothy Luke. She is survived by her daughter Katherine Juliet, sister Rebecca, mother Dorothy, father Richard and husband Richard. We will all miss her dearly. The cremation will be held at Ferncliff Crematorium in Hartsdale, on June 8, 2005, at 11 am. In lieu of flowers, donations may be made in honor of Juliet to IBCResearch (http://www.ibcresearch.org/donations/). Published in the New York Times on 6/6/2005. (for a map to Ferncliff Crematorium click here)
January 1, 2004 With the new year and the fight against her cancer going well, Juliet has decided to focus on the future and reestablishing a normal life. With that, this timeline blog will be suspended indefinitely. Juliet wishes to thank all those who have visited and hopes that her story has helped create awareness for this rare form of breast cancer known as IBC.
December 10, 2003 Katie turns one-year-old today. Over the weekend Juliet and Richard hosted a first birthday party for her. Many friends, neighbors and relatives came to celebrate. It was a joyous occasion.
October 14, 2003 Juliet and the family fly to LA for the Sharon Osbourne Show. The whole thing felt very surreal, she said. "I didn't worry about it much beforehand. But the night before I got virtually no sleep. I am going to be on national television, it is 'live to tape' so I can't mess up and do it again. I am terrified - why am I here, what WAS I thinking!" To see the segment, please click here for high speed or here for dial-up.
October 11, 2003 Richard and Juliet buy a new printer, which is also a photocopier. "I need it to process the continuing mountain of medical bills. The paperwork is unbelievable. The NHS (the socialized health service agency in England), for all its problems, is still a wonderful thing."
October 3, 2003 Her four-month check up with Dr Van Poznak went almost perfect. Juliet received the "all clear" again except the same liver blood test. It must be repeated but the doctors are not too concerned. "Back to the low fat/no alcohol diet... Arghhhhhh!" Juliet said. She will have no check up until February. "That seems like an incredibly long way away but I am feeling quite relaxed about it. I am adjusting at last," she said.
September 28, 2003 Juliet got recognized in the supermarket as "the person from Cosmo (! : ))," the woman said. "I had a nice chat with the lady. It was Katie she recognized, who could forget that hair!"
September 24, 2003 The Glamour magazine article was seen by the human interest producer of the Sharon Osbourne Show. The show contacted Juliet about having her, Katie and Richard go to LA and be guests on the show in honor of Breast Cancer Awareness Month. Juliet agreed to go in order to "get the word out about IBC on national television," she said.
September 21, 2003 On a walk through Central Park, Juliet gets stung by a wasp! She spent Monday on the phone between Sloan Kettering and her regular doctor deciding whether or not she needed antibiotics. The sting was on her left hand, which puts her at risk of lymphedema because most of her lymph nodes on that side have been removed. In the end, the doctors decided that antibiotics were not not necessary, "but I learn a valuable lesson," Juliet said. "I must be more careful!"
September 18, 2003 Juliet has her first mammogram. Once someone is diagnosed with breast cancer your chances of getting it again in the other breast increase. Normally she should have had a mammogram already, but because there was no obvious lump and because she was pregnant, the doctors waited until now. Juliet got the results back right away, "which is a big surprise to someone used to the UK NHS healthservice!" She said. "My results are all clear."
September 15, 2003

The Glamour Magazine article featuring Juliet finally dropped. She went out to buy it and admitted she was pleased with the picture and they were kind enough to send her a couple of large copies. As for the narrative, Juliet said it was, okay, but the magazine did not include all that they promised. Juliet asked them repeatedly to mention the symptoms of IBC, this website address, the IBC support website address and the 1800 number. "Passing on this information was my whole reason for doing it [the article.]," Juliet said. "They assured me they they would. Well surprise surprise, they have done neither. I was put in touch with Glamour via the Public Affairs officer at New York Presbyterian Hospital where I gave birth. Her angle was to get the hospital mentioned - they didn't do that either, so I bet she is not too pleased either: ). I am irritated and feel I have been used a bit as a side show freak. Oh, well, you live and learn..."

Incidentally, Juliet noted, Hilary Blackburn (the woman featured in Glamour's main breast cancer article) is a friend of a friend. She also was diagnosed last year at age 32. "Weird huh?" Juliet said. "That we are both in the same mag?"

September 10, 2003 Richard and Juliet returned from a wonderful trip to the U.K. Juliet turned on the computer to wade through the IBC list messages. She received news that a close IBC friend from the list, who has a baby one week older than Katie, was diagnosed with brain metasis while Juliet was away. She was almost done with her IBC treatment when the brain mets showed up. Her IBC pathology report was almost as good as Juliet's. So far, the woman has had brain surgery and will undergo whole brain radiation. She is 36. "I also learn that another woman who was always there to support the rest of us has now gone into a hospice (she is 53) and a 16 year old has died - yes 16!!!" Juliet said. "I sit in front of the computer and weep."
September 4, 2003 "Well it has been my first anniversary. One year since diagnosis. I let the day pass with hardly a comment. We were traveling so it is easy not to dwell on it. I have had a very difficult time the past few weeks. Each day that has passed since the beginning of August has been a sense of 'this time last year...' Now the first anniversary is out of the way I am hoping that I remember less and less what life was like before. I have to accept my new self and life, however hard," Juliet said.
August 31, 2003 Katie learned to wave bye-bye.
August 30, 2003 Richard's sister, Sarah, married Toby in the Lake District of England. Juliet and Richard made the trip back to the U.K. "The wedding went beautifully," Juliet said.
August 23, 2003 Juliet went to get her hair cut again, it's really curly, she hates it. She said, "My hair fell out and never grew back - someone else's hair grew back instead!" Some people have told her how much it suits her short, but some others "have been very honest and said it looked better when I was bald. I am hoping it improves as it gets longer."
August 18, 2003 Juliet found this message on the IBC website support list pertaining to the latest IBC survival statistics:

"I don't want to break anyone's spirit but Dr. Patricia Tai in Saskatchewan using SEER data and using a log normal distribution (yes, I know this is lots of statistical stuff) calculated that 95.5% of patients die within 7.67 years (private communication, not published). "

Juliet knows that statistics should not to be used for each individual case but she admits it is hard not to think about them. "By the above data I have a 4.5% chance of celebrating my 40th birthday," she said. "If I get there I will certainly try and do it in style. It is very hard for me to hear people complaining about their 40th and 50th birthdays right now."

August 12, 2003 Juliet went for genetic counseling at MSKCC to see if it is recommended that she have the blood test done for a breast cancer genetic marker. The doctors said she has a mild familial history but they still recommend the blood test. She will discuss it with her family and have the blood test done in a few weeks. "No matter what the outcome of the test, it is still recommended that I, and my other family members, have regular screenings for breast, ovarian, prostate and colon cancers," Juliet said.
July 28, 2003 We always knew Juliet was glamorous and now it will be truly legit. Glamour magazine is doing a story on her for their October issue, which is National Breast Cancer Awareness month. Today, Juliet went into the City for a professional photo shoot (this is old hat for Juliet by now). "They gave me some of the Polaroids to keep. I hope the real photos are as good," Juliet said. "The photographer was lovely (and 6 months pregnant!) so Katie was the main attraction for all."
July 26, 2003 The Jones went back to Annie Watson for a full family portrait. It was Richard and Juliet's Christmas present to one another. Watson is the photographer that shot Juliet while she was bald and pregnant back in October. "Katie stuck her tongue out the entire time!!" Juliet said.
July 18, 2003 The doctors are taking some time to reassess the decision to put Juliet into menopause. They are repeating the hormone receptor test on tissue that was taken out of her breast back on September 4, 2003. If the result is the same, hormone negative, then Juliet will not need the injections. The results are due back in a couple weeks.
July 14, 2003 Juliet returned to the doctor's office because her menstrual cycle has returned, which is not good news, she said. She will be given monthly injections to shut it down. Because of the risk of the cancer coming back, she cannot have any hormones in her body. That means no hormone replacement therapy, no hormonal methods of contraception, no soy-because it mimics estrogen- and worst of all, no more children. "The side effects of the injections are the same as the menopause," Juliet said. "Hot flushes, mood swings, possible loss in bone density, etc..." (sigh)
July 5, 2003 Juliet had her first real haircut since early last year. "Just a trim to make it look like it happened on purpose," she said. "My hair is coming back curly!"
June 23, 2003

Juliet had a check up with Dr. Petrek, her breast surgeon. Nothing too new to report other than she has a mammogram in a few weeks because they do not have a baseline reading for her yet. "She (Dr. Petrek) confessed that my path results were a surprise to her. She did not expect me to do so well. She circled 'NED' (no evidence of disease) on the paperwork. That felt great, let me tell you.

"Everyone says how much short hair suits me. I have never had short hair before but I could get used to the way it is so quick and easy. The taxol made it a bit lighter but it is darker at the roots. Too short to tell yet if it will come back curly or not."

June 12, 2003 "I can't believe Katie is now 6 months old," Juliet said. "Didn't that fly by? I am feeling like I am just starting to be a normal mum at last. Going to mother and baby groups and all that stuff. Katie has been a real joy, especially recently, she has become much more animated around this time. It is very funny a lot of the time. She giggles lots, smiles at the cat and is generally a very happy baby. My only issue is she is quite clingy for me since I made the decision not to go back to work. She is definitely mummy's girl right now. Woe betide any baby-sitter, if she wakes up in the night when I am not here!"
June 11, 2003 Katie had her six month doctor's appointment. She measured 27.5 inches and her weight is off the scale, above the 100th percentile. "Her peahead remains, though," Juliet said. She sits up now, albeit a little wobbly, and has sprouted the start of two tiny teeth. "So she is very dribbly and chews on everything."
May 21, 2003 Juliet tried to join a healthy eating trial for breast cancer patients
but she is not eligible because her cancer is stage IIIB (Trial is stages
I-IIIA). "How lovely to know that my cancer is too advanced for this trial!" she said.
May 19, 2003 Juliet's check up with the doctor went well. The doctor thinks the pain under her
arm is muscular, from carrying Katie on the right side all the time. Juliet is out of the habit of using her left side because of all the surgery and radiation pain. "Now it just feels weird to feed or hold Katie on my left side," Juliet said. The doctor checked Juliet's blood results too and all the tumor markers came back normal. "Yipee," Juliet shouted. "But I have to repeat one of the liver enzyme tests as it was slightly high. They want to repeat it in June and I am to have no alcohol or fatty food for a week beforehand (a week!!!)." Juliet also may be eligible for a vaccine trial later in the year."
May 13, 2003 "I have had a slight pain under my right arm for a couple of weeks
now. I can't put it off any longer, I need to see my oncologist for a check
up. I have moved my June appointment forward to this Thursday (15th May). I
am quietly, utterly terrified," Juliet said.
May 11, 2003 Juliet's first Mothers Day. "Katie, with the help of her Dad, bought me a
beautiful leather-bound journal so that I can write down my thoughts, Katie's
developments and our special moments." The couple also was featured on WNBC- Channel 4 for a special mother's day segment. Click here to see the video package. "I could not bear to watch it as it aired--too nervous--but Richard taped it and I have
seen it since."
May 1, 2003 Back in the USA, Juliet has an epiphany. "I have decided that I cannot go back to work," she said. "It just feels all wrong." She is very sad to be leaving MSF, but she said it is not
her priority anymore. "I have told Richard that later on I will seek employment at 'Hooters,' except my T-shirt will just say 'Hoot!!'
April 27, 2003 In Barbados, Richard, Juliet and Katie were involved in car crash. Local young boys traveling at break-speed knocked the family off the road and caused their car to roll over on it's side in the middle of a sugar cane field. Miraculously, the family escaped unharmed and still managed to enjoy the vacation. "We do feel however, that it is about time something nice happened to us!" Juliet said.
April 22, 2003 "I am pretty sore now," Juliet said. "My skin has a big, red square on it. The skin is broken and blistered in places and underneath feels bruised. I still think I have experienced worse sunburn in my life but not for this long. I can't sleep on my side again and getting out of bed is painful." The good news though: only two more sessions to go and all treatment will be complete. What a year! Then, she and Richard are off to Barbados for a wedding and to relax for a week. "What will I do with myself when I don't have to go to the hospital every day?"
March 31, 2003 Katie learns to laugh. Juliet is halfway through her radiation treatments and so far has experienced no side effects. "I am very tired but I think my daughters sleep patterns (or lack of) may be more to blame than radiation," she said. "I have had lots of family support, my mum and aunt are here now. My mother-in-law and sister-in-law arrive soon."
March 14, 2003 "After all the Friday the 13ths [in this saga]....how about this one," Juliet said. "I found out yesterday that I will start my radiation on Monday as my blood counts are good." This means, if there are no breaks in the machine, and her side effects are not too bad, Juliet will finish all her treatments on the April 23, 2003, which is, "one year to the day that I found out I was pregnant. A very strange year indeed."
March 12, 2003 Juliet had her body mold made and body tattooed in preparation for radiation therapy. "The tattoos are tiny," she said. "Just like someone poked me with a pen, I have 7 of them." The mold and tattoos make sure Juliet is in exactly the same position each time. She will go every day, Monday through Friday for 28 treatments.
February 28, 2003

Today was Juliet's last chemotherapy session. She hopes it's the last one forever. "I have mixed feelings," she said. "I am pleased but also apprehensive. What if there are still cancer cells floating around in my body now there will be nothing to attack them. I feel like asking for just one more dose to be sure."

During her pre-chemo appointment, the doctor asked Juliet if she still felt numbness and tingling in her fingers. She did, as well as her feet now too. The doctor offered to decrease the dose to minimize this side effect, but Juliet declined. She told the doctor she could manage and asked, "the feeling will come back in my fingers, right?" To which the doctor replied, "Actually, not necessarily."

So the numbness and tingling may be permanent. "How did I miss that in my briefing with the nurse?" Juliet wondered. "Ohh well."

After this session, Juliet won't see the doctor for another four months. "This is a very daunting prospect," Juliet said. "How will I manage the fear every time I have a headache (is it brain mets?), backache (spine mets?) and cough (lung mets?)........"

*note: "mets" refer to metastasis, which is a kind of cancer that some women suffering from breast cancer develop after initial treatment. For more information, please visit: http://www.bcmets.org/

February 27, 2003 "Richard and I have been married for 5 years today. We get a baby-sitter for Katie and spend our first night out together since she was born. I had a little wine with dinner even though it is my last chemo tomorrow," Juliet said.
February 22, 2003 Attended the Third Annual Conference for Young Breast Cancer Survivors in Philadelphia hosted by the Living Beyond Breast Cancer group. "It was nice to be in a room with people my age who also had no hair," Juliet said. Excellent presentations allowed Juliet to learn a lot more than ever before about her disease. But, because she could only make it a day trip, there really wasn't enough time to network. "So next year I will go for the whole thing Friday night and Sunday morning too. Didn't want to be away from Katie that long this time."
February 21, 2003 Juliet saw got a visit from a high school friend she hasn't seen for more than 10 years, though they have kept in touch via letters and email to share important life moments. "When she left she gave me the most overwhelming hug," Juliet said. "I kind of got the feeling that she was worried she may not see me again - if it is another 10 years until we have the chance then she admittedly has a point. But it felt really weird..."
February 14, 2003 Valentines Day and chemotherapy number 3, "very romantic!" Juliet said. The chemo itself went fine but the side effects are the same as before-- aches and pains, red face etc.-- with some added new problems-- mouth ulcers and finger nails have started to fall off. The positive, though, is that there's only one more treatment left. "We took our mind off it all by spending the long weekend in Vermont," Juliet said. "It was Katie's first vacation."
February 10, 2003 "I am so tired it hurts," Juliet said. The combination of sleepless nights, chemotherapy and anemia are really taking their toll. "Also, I am finding that I have too much time to think about things in the middle of the night. The statistics I am facing seem horrifically real at 4 a.m."
February 9, 2003 On a family outing, Juliet, Richard and Katie went to the shopping mall at Woodbury Commons. There, Juliet discovered a different burden to living with cancer and that all pain isn't necessarily associated with the physical. "Whilst we were there I had to use the rest room," Juliet said. "When I tried to enter the ladies room, a little girl, probably about six years old, was standing at the door and she looked at me funny. It took me a second but I realized she was looking at my head. 'The men's room is over there,' she said to me, virtually barring my entrance. And I realized she mistook me for a man. I have never felt so unattractive, no hair, one breast missing, very few eyelashes and eyebrows, and now children think I am a man. I took me about half an hour to find this incident funny - Richard, bless him, held off from laughing until I could find it funny too."
February 5, 2003 The side effects of the chemo are the same again. Juliet's face appears sunburned for about two days afterwards, due to the steroids she's told by doctors. The bone pain started again on the Sunday following the Friday appointment and continued through Wednesday. "I have been given Celebrex for the pain this time but it doesn't help much," she said. "I am also losing sensation in my fingertips which makes buttoning Katie's little clothes difficult. On the bright side though, two down, two to go."
February 4, 2003 She spent the morning trying to find childcare for Katie so she can return to work at Doctors Without Borders in June. "I am returning part time as long as I can find daycare - easier said than done," Juliet said. "The attitude seems to be that I should have sorted this out last year. Feel like shouting that I had a lot on last year!! Something will hopefully come up. Katie is on 4 different waiting lists now."
February 2, 2003 Chemotherapy number two was completed on Friday. Her blood results were good, she's almost not anemia anymore and the white cell count is fine- helped along by daily injections of Neupogen she's been administering herself at home. "Sadly, by Sunday," Juliet said, "my hair has started to fall out in clumps again. So I went to the barber shop in Tarrytown to get it all shaved off again. Pretty depressing but at least I know how quickly it grows back, besides, now I get a cheap men's price haircut!"
January 22, 2003
Update on how Juliet's coping with this round of chemo (Taxol)-- "It has not been so easy this time. I started having severe pain on Sunday, mostly in the bones of my knees and feet. This combined with the sleepless nights feeding Katie has made it very difficult. However, I suppose it is about time I had some adverse side effects from all these drugs!" she said.
January 17, 2003 The next round of chemo starts. This is the first in a series of four, which will span eight weeks. An old pro at it now, Juliet has not suffered any side effects, though it's still a bit early to tell completely. "They've said that I may not even lose my hair this time around," she said.
January 15, 2003 Scanning an IBC support group website, www.ibcresearch.org, Juliet finds and signs up for a breast cancer survivors conference called "Living Well Today for the Promise of Tomorrow..." Presented by the Living Beyond Breast Cancer group and the Young Survival Coalition, the conference will focus on dealing with the needs of younger patients. "When I read the flier, the quote: 'Living decades with this serious diagnosis' is what struck me," Juliet said. "It's an aspect of the disease I hadn't yet thought about and what makes you different than an older survivor."
January 10, 2003 Juliet goes to oncologist appointment where she will find out the results of some blood tests and potentially start her next round of chemo. The doctor decides to wait until next week to start, but the results of the blood tests are better than good-- tumor markers in the blood show that the cancer has not spread to other parts of her body.
December 31, 2002 Mum, Dad, and baby ring in their first New Year as a family. The night is quiet, a little champagne accents the mood as they watch the ball drop and go to bed-- until Katie wakes in the middle of the night, that is.
December 26, 2002 Boxing day (if you don't know yet, Juliet is British) arrives and so does the results from the mastectomy-- 0 of 16 lymph nodes infected, clear margins in bordering areas, and no signs of active disease. The oncologist noted that these results are the best they could possibly be. "...[sigh]... when I realized who it was on the phone I was terrified. My heart beat and then just sheer relief, really pleased."
December 20, 2002 After a successful surgery and proper physical training, Juliet's released from the hospital.
December 18, 2002 Pushed a few days back because of the C-section, Juliet undergoes mastectomy.
December 15, 2002 Juliet and Richard put up Christmas tree. Juliet decorates tree and even climbs stairs to tend to Katie-- that's less than a week after a C-section!
December 13, 2002 Another lucky Friday the 13th, and Juliet and Richard's 11-year anniversary, mum and baby are released from the hospital.
December 10, 2002 Inducing drugs don't seem to work, Juliet develops a fever. Doctors decide to proceed with a C-section. "I wanted the induction to work because I didn't want to have two lots of major surgery in one week," Juliet said. "But, at the same time, I wanted the best for my baby if that's what it needed." KATIE BORN!!! 10:25 p.m. -- healthy as can be.
December 9, 2002 Juliet goes into New York Presbyterian hospital and receives drugs to induce labor.
November 11, 2002 In an appointment with the surgeon, the doctor was pleased with the results of the chemo and decided to schedule a mastectomy before the next round of chemo started back up. This would be a few days after Juliet's labor. "It was absolute jaw-dropping horror," Juliet said regarding the mastectomy. "I knew it was coming but didn't expect it to be so quick."
November 4, 2002 Growth scan to measure progress of baby shows a proper size and weight. Doctors discuss inducing labor in early December, a month early, in order to start the next round of chemo sooner rather than later. "After 36 weeks the baby is fully cooked anyway," said Juliet. "So since she wouldn't be premature, I could get on with my treatment."
September 13, 2002 Chemotherapy started on Friday the 13th. "We can't get any unluckier," Juliet said to the doctor when asked if that date was okay.
September 6, 2002 Juliet seeks second opinion at Memorial Sloan Kettering Cancer Center (MSKCC). Results confirm first opinion and the doctor there recommended immediate chemotherapy. They discussed pros and cons to keeping the baby and the doctor recommended not to abort, sighting that "most" babies deliver healthy after chemo.
September 4, 2002 Antibiotics were not helping so under local anesthetic a biopsy was performed. Results came back immediately and the doctor said that it confirmed their worst fears. Next major decision was whether or not to terminate the pregnancy. New York state law forbids abortions after 24 weeks. Juliet was two days away from that deadline.
August 28, 2002 Because the antibiotics were not helping, Juliet went to see a surgeon. He said her symptoms, "were concerning to him," Juliet said. "Which isn't good coming from a doctor!" He changed the antibiotics to a different kind and wanted to perform a biopsy if they didn't help.
August 19, 2002 Showing up a day early for her scheduled doctor's appointment because of shooting pains and severe swelling through her left breast, the doctor prescribe antibiotics, which is a standard first step in the diagnosis of IBC. "I don't know if he was thinking if it could be IBC and just not telling me because he didn't want to frighten me or if he was just hoping that it wasn't."
July 26, 2002 Juliet flies home to England to surprise her grandmother at her 80th birthday party and to share the news of her pregnancy with her family in person.
July 23, 2002 During regular check up, Juliet first points out to doctor that she has a swollen lymph node under her arm. Doctor's response was to not worry about it, probably just a slight infection.
June 26, 2002 Doppler scan records baby's first heartbeat. "It was the first time I cried... I waited until I left the doctor's office and wept in the corridor."
May 8, 2002 First sonogram shows healthy baby forming. "It looked like a jellybean with a pulse," said Juliet.
April 23, 2002 Juliet finds out she's pregnant.

 


 

Copyright©2002
Richard and Juliet Jones