JULIE'S THIRD CHEMO TREATMENT - APRIL 2015
I pick up Julie at 9.15 am and she is already waiting in the driveway, looking like she is headed to a party, pretty as a picture in the scarf of rust and yellow leaves I gave her, with the matching bracelet, and she has found a perfect pair of ear rings to match. Her make up is perfect, and her deep orange blouse and black tights and shoes complete a picture of a stylish woman - all that gives her away is the uncertainty in her eyes. I am so happy to be the one taking her to this, her third chemo treatment, which will herald the half way mark of her treatment.
The Shoalhaven Cancer Clinic in Nowra is a brand new building, spacious, light, bright with a breathtaking postcard view of the river, and hundreds of green trees lining its banks. The staff I have met so far are exceptional, smiling, reassuring, helpful, and knowledgeable. What a gift this place is to the Shoalhaven!
I ask a man sitting in the waiting room to take a photo of us, Julie's smile is wide and bright. I wonder how I would deal with this, as I watch her grace and courage as she deals with the details of this day, her note book under her arm, and a bag filled with essentials.
Julie weighs herself, 68.9 kgs, and takes a seat in the big arm chair, in a wide open clear space, with vast windows overlooking the trees and the Shoalhaven River. Her nurse for the day is Leonie James, a blonde middle aged woman, compassionate, professional and reassuring. She greets Julie like an old friend.
Julie has a 'port' in her chest in which they insert the needle into which the chemo will go. This port which saves her a lot of pain now, she has a tendency to bruise very easily, and this has caused her a lot of trauma and pain when it was inserted.
A short update on how Julie got to be here today. She was diagnosed with breast cancer on December 9th, went into hospital on the 16th for the lumpectomy, returned to hospital a week later on the 23rd for more day surgery, and unfortunately, on her return home, she experienced complications, and she was back in hospital on Xmas Eve. She and her husband Phil live in our street in Shoalhaven Heads, a 2.5 hour drive from Sydney and the hospital, so this was a particularly difficult time at a very busy time of year on the roads. She showed great courage.
It is the tradition of their family that both their families gather at their home for a massive celebration of Christmas. Originally, they decided to cancel it, and that too, caused some family stress. But gentle hearted Julie made a request, and had 13 family members come down on Boxing Day. Julie and Phil have three beautiful, thoughtful, practical daughters - with such a wide range of skills - whom she said she knew would 'take care of things'. They cooked and cleaned and loved their mother to bits. Julie's phone at home is connected to an intercom downstairs, and she said one day she pressed the button, and one of the family picked up the phone with a cheery "Room Service!" Julie asked for a bottle of champagne and a pack of cards and "Everybody on my bed", which duly occurred - she has a photo of a big crowd of family sitting playing cards on her bed, with Julie holding a a glass of champagne. When she tired, she asked everyone to leave, and they did. The next day, during a thunderstorm, she sat with her three girls on the bed, watching "The Sound of Music" and singing along to "These are a few of my favourite things". I can imagine this scene well, as I have seen Alyce in action! I know her the best, she is a totally self expressed, confident, musical young woman, so easy to imagine the Four Guy Women impersonating Julie Andrews.
After chemo, Julie has to be especially mindful of certain things, ie the toilet, she has to flush it before use, and twice after use, wash it down with special wipes, she has to do her laundry separately to Phil's, and wash her clothing in hot water, especially her underwear. This is because medical science is still uncertain of the effects of chemo on the body ..... a scary thought indeed, so she takes great care.
It is now 10.30 am and Julie has had the initial blood sample for testing taken through the 'port' - the tests will ensure that her blood cells are at a certain level before they can administer the chemo. So we are sharing a cup of tea. She is cheerful and chatty and has given me a beautiful card of acknowledgement, a picture of a Monet painting, and a wooden heart on a string with the inscription "Home - Good Friends make a House into a Home." True.
Julie has had one lymph node removed during surgery, and the pathology report showed there was no spread which was extremely good news. She has learned so much about cancer in the last couple of months, and has files filled with materials, brochures and resources. She is a very organised woman. Her bag is filled with the little treasures to assist her recovery, good luck notes and hearts, including her mobile phone which is filled with messages of love and healing.
A questionnaire now: have you experienced vomiting and diarrhoea since the last treatment? No, but nausea for ten days. That's quite a long time. Diarrhoea for a few days - then OK. Interesting, the chemo can often bind you up! Mouth? Yes, furry mouth and nasty taste. Ice cream, icy poles, yes!!! Loss of weight, yes 3 kgs.
On and on, questions which will assist Leonie to assist Julie, questions which we hardly ever, in good health, even consider.
No heart pain or palpitation, no cough or phlegm, I bleed very easily - OK, you need to go to casualty if that continues unabated, as chemo can affect your platelets. My diet is all over the place, I don't feel like eating, I cannot taste anything, so am thinking of mega vitamins. Chemo creates free radicals, so anti oxidants like mega doses of vitamins or even green tea works against the chemo. Tingling and numbness in my fingers extends half way up the finger. Can you do up buttons? Yes. Good, chemo can affect the nerve endings too. No changes in my feet. My nails have been good. Frozen gloves? What?? My mind is reeling. Black nail varnish apparently helps prevents nail problems! Frozen gloves diminish the blood flow to the periphery of the fingers and the nail bed, and diminishes the chemo to reach there, and protects the nail beds. Perhaps because the light does not get to them? Any hearing problems? Not really. I have had folliculitis on my head (like ingrown hairs) and had antibiotics for them, they itched a lot, but cleared up now. I went to the wig library this week, but haven't worn wigs much because of the folliculitis. Having nana naps during day? Yes. I seem to go down on the Sunday after the start of chemo on Thursday, and then sleep and spend a lot of time in bed for next few days. Any pain? I feel like I have flu symptoms and ache all over. I have buzzing in my ears from time to time.
I am painfully aware of how frequently I take my own good health for granted as I listen to the list of distressing symptoms Julie has been dealing with on a daily basis.
I got quite depressed, as I was unable to summon the strength to want to do anything. This is unlike Julie, who is always ready to socialise, up for a bit of a party, for a trip, a football game, a book club meeting, a glass of wine or a cup of tea. There is so much about chemo and cancer she is learning, and I am filled with admiration for her. Yesterday however, she was feeling stronger, and went to Berry, doing a bit of shopping, and she loved it. There is a special shop which sells thoughtful, unusual and loving gifts which she likes, and bought a few for friends. She was amazed at the number of people who opened up to her, and her scarf is the clue that tells people she is in recovery. One woman asked if she could hug her. People tell her their stories of their own recovery, their family and friends experiences. In the IGA, looking for a special tea, Kim - one of the staff - strikes up a conversation, she went through this herself a few years ago, they share a generous and informative conversation, and exchange phone numbers and emails. Julie is amazed at people's kindness and generosity, she is having the kind of conversations she would never otherwise have had. The world is full of good and loving people. They just don't get into the news that often.
Bill is the nurse practitioner, and he advises to keep a watch on the numbness in her fingers and the buzzing in her ears, but her blood tests must be right on course, as she is 'good to go' with the chemo.
Julie is hooked up to a bag of sodium, which flushes through the system before the chemo is started. Leonie will robe up in the 'purple gear', protection against the chemo about to run through tubes into Julie, to kill off the cancer which has intruded into her body - a body which has served her well for 55 years, as a daughter, a wife and a mother, a strong body which has given birth to four children - how many miles have these feet walked, how many meals have these hands prepared and how many nappies have they changed, how many hugs have these arms given? Thankfully now, this body will be restored to good health, with thanks to the miracles of modern medicine, and she will return to the activities which she loved with a new sense of wonder.
The calculated dose has been until now 130, but today Julie is getting 110, which Julie confirms - it is a 15% reduction - it must be enough to do the job, but not too much to make her feel as ghastly as she did after chemo last time. Julie will also have a slow release pain patch to help with the aches and pains she had experienced after the 'next day injection', (Neulasta Automatic Needle Guard) which she has to give herself. This injection is to boost her white blood cells which were very low after the last chemo - I now know chemo attacks not only the 'bad' cells, but all the cells, and this is why she has the blood tests. They exchange this information knowledgeably, like colleagues. The sodium bag is empty and Leonie is ready to go with the chemo.
Julie once more confirms who she is, and her date of birth. Her hands in the frozen gloves are already aching with cold, and she has to withdraw them. Not many people can tolerate them, and won't use them, but Julie is a trooper.
"If you start to feel uncomfortable in any way, breathless, cold, let me know", says Leonie, "but I don't anticipate that". She smiles with kindness, and says, "If that's OK, I shall see you in an hour."
Julie and I talk during this hour, though I am mindful of how tired she must be. Funnily, I am telling her about Graeme and Ed, and our relationship, both now 'gone' - one to death by his own hand and one to neglect. She is a great listener, and shares her own experiences and insights. Her poor hands are freezing, she removes them from the gloves regularly. We speak of family, and recognise some similarities between ours. Some of us just cannot deal with challenges as well as others can, says Julie, and all families have issues, don't they. And we speak of her dear mother, who is 85 years old - a loving and gentle woman, supporting Julie with meals and cooking and knitting beanies for her daughter's head to keep her warm, and who has called every day, sometimes more, and how the phone will often wake Julie up - then her Mum hastily puts the phone down. Norm, Mum's husband, brings the papers, walks Brockie their dog, (our Cino’s best mate) and drops in casseroles. Loving acts of service, loving acts of kindness, what a difference such things can make. And what a challenge for a mother to bear witness to, and how her old heart must ache, I think. This is an all round challenge for each member of her family, watching someone they love suffer so.
We look up at the chemo bag and it seems to be 3/4 way through. My eye is unpractised, but I am learning.
It is 12.11, and she will have three bags full, like the nursery rhyme - Docetaxle first, the one which affects the finger nails, then Carboplatin, and then Herceptin. She is pulling a face, she can 'feel it' in her mouth, and all of a sudden, tiredness sweeps over her face, and her eyes droop. Oh my Julie dear, I feel so much for you. I suggest, "Close your eyes for a minute". She does.
The man in the chair opposite is here every day Leonie tells us, he is allowed 'home privileges', such as his portable radio tuned quite loudly to a local radio station. It is playing 'our kind of music' - Rod Stewart, The Beatles, and one which I now recall is what precipitated the Graeme and Ed conversation, as James Blunt sang "I will never be with you", one of the songs Ed and I chose to play at Graeme's Celebration of Life which was at the Bayswater Brasserie in Kings Cross.
Its almost 1 pm and the first bag has finished, more sodium has been flushed through, and the second bag is being hooked up. Apart from the tea we had earlier, she has had some apple juice, and now one of the Cancer Council's volunteers, a man called Andrew, comes around with sandwiches for the patients. He has such a smile! She chooses an egg sandwich and I have brought a salad which I prepared at home this morning. I think her feet must be cold, and I ask her - yes, they are, but she is prepared, and I find her socks in her bag and gently put them on. Her feet look pale, small and vulnerable. I am aware of a lump in my throat.
The bag is beeping, and I jump up, looking intelligently at it, and of course have no idea what it is. A nurse comes. It is fixed. It beeps again. And then for a third time. What is going on here, a young blonde nurse asks, as she flips dials and adjusts things. She sorts it. There is 5% glucose in with this drug, Julie closes her eyes and tries to sleep. The radio is playing a falsetto song from the eighties I cannot remember the name of, people are having conversations around their chairs with their loved ones, angels in purple gowns are administering drugs, Julie sleeps, or tries to. Life being lived in abnormal conditions, it is reassuring to know that humanity adapts in the most amazing way to the challenges that life presents us.
I am so moved by Julie's humour and courage in this place in her life and her presence here in this ward. She told me she has just awarded me 10/10 for my carer role. Giving her a peppermint just put me up a notch apparently. I am happy to be here with her, it’s a privilege and an honour. If I am ever in such challenging circumstances, I would want a friend like me on my team.
"You are so Beautiful" by Willy Nelson is playing. And so Julie is. Her face is tired and she looks in pain and her scarf is skewed, but she looks as Willy says, "So beautiful to me".
I leave a note for Julie telling her I will be gone for half an hour. I drive into Nowra, manifest a parking space right outside the Julie's Bead Shop despite the manic Easter traffic, and buy her a stunning pair of bright orange earrings, then to North Nowra to June to collect our mail which she has picked up whilst we have been in Bali.
Julie is awake on my return, this bag has been a problem, it beeps every few minutes, the tube is full of bubbles - "If only this were champagne", she jokes - and she sits very still trying not to kink the tube and make it beep. I make us both a cup of tea, having to get technical assistance with the hot water machine - the instructions are ambiguous and my technical skills are not a core strength. I give Julie a small bunch of grapes, and as I eat one, remark on how sweet they are. She shakes her head, puzzled, and says "These grapes do not taste like grapes at all ...." What then, I ask? She chews another one. "The Chemo". Oh dear. "But they are still good as they are juicy and have texture".
This ward is remarkable, quiet, peaceful almost, despite the almost constant beep-beep going in the background. There are seven patients here, and as one chair is vacated by a patient, another patient takes their place. I am shocked at this constant turnover, and aware from reading the bulletin Julie has given me that the incidence of cancer seems to be increasing. What are we doing to ourselves? There is a section for another two, which does not have the equipment yet, so perhaps they are planning for the future, expecting more patients.
The second bag of chemo empties, and a bag of sodium is once more flushed through the tubing, and I guess, Julie too, in preparation for the third bag. It is amazing that these bags of poison are capable of saving lives and killing cancer. I am in awe.
At 2.42 pm and the final bag is hooked up, the Herceptin. At Julie's request, I take some photos of Julie and the smiling staff, whose smiles cannot be seen behind their face masks but whose cheer pervades the space. Nurses are our unsung heroes, without a doubt. One comes around with a bag of tiny Easter eggs in gold foil, filled with caramel. Yum, and Julie says she can taste the chocolate! Just as well its Easter, she can overdose on chocolate!
Leonie takes Julie's purple folder away for updating - she prints out everything that has happened today, the drugs, the appointments, the blood tests, and places them inside, so Julie has a record of everything. Isn't that amazing?
This bag does not beep like the last one, and it seems to drip through more quickly. It is almost 4 pm, Leonie says she will give Julie 'an early mark', and we can go home. We pack up, we brought enough for a month, but we had everything we needed. Julie has as sign "Pick up Refrigerated Item" – it’s my champagne, she jokes. Unfortunately not, it’s the injection she must give herself tomorrow, and we collect it from the pharmacy.
The bill for the take home injection is $37.50, and the bill for the medical treatment today is completely covered by the Government. I am gobsmacked. What a bountiful country we live in. How many people around the world do not have access to this life giving treatment as it is so costly and not subsidised by the government? Here are a few very sobering statistics - breast cancer is the most common cancer diagnosed in women, and 1 in 8 women will be diagnosed with breast cancer by the time they turn 85. 42 women will be diagnosed with breast cancer each day in 2015. Men too, are affected by breast cancer: in 2015, 15,600 women and 145 men will be diagnosed with breast cancer, and 3,040 women and 25 men will lose their lives to breast cancer in 2015. And in 2020, 17,210 women will be diagnosed with breast cancer. And medical science is at work on finding a cure and a treatment in the least invasive way possible. Thank God.
The twenty minute drive home is relaxed and pleasant, we are going in the opposite direction to the Easter traffic. I escort Julie into the quiet house, put the kettle on for her, and tell her to go to bed. We have a farewell hug and she tells me again how grateful she is, I thank her for trusting me to be her support person, taking care of her today.
I drive the short three house distance to our house, and say a prayer for Julie and her family. I have an image of her at Christmas in eight months time, dancing in the kitchen with her daughters and drinking champagne.