Highly recommend Tracey Scone Wig Library, Darlinghurst, Sydney
In anticipation of upcoming chemo, I visited the Tracey Scone Wig Library yesterday. It's behind St Vincent's hospital in Darlinghurst, in a sweet terrace house. The library is not open every day and you need to make an appointment. All details on the link. There is a large choice of wigs, styles and colours. Gloria and Belinda were incredibly helpful: not only suggesting styles but advising on wig care etc. It was such a supportive environment. And no problem at all to play with different looks. The wigs are completely free and you can keep until your hair grows back. I felt rather confident when I left. I decided on BIG Italian hair. Colour and length similar to my hair - but volume is more! Tomorrow I go to a Look Good Feel Better workshop and want to learn how to draw big eyebrows to match the look!431Views0likes2Comments
Wigs
my friend and I went to Wig Affair yesterday in Piccadilly Arcade in Pitt Street Sydney. It was a long Drive from Mittagong but well worth it. The ladies were both very helpful and friendly. My friend bought a synthetic wig she’s really happy with. Thanks for your friendliness and knowledge ladies. We would recommend this shop highly.51Views1like2Comments
Losing My Hair
Hair loss, the one thing that everyone automatically associates with chemotherapy. It's the most obvious sign to the general public that something is going on in your life that you'd really rather not have to deal with. Hair is a very important thing for a lot of women. You change your hair style, colour and length. You can put it up, curl it, straighten it. Changing your hair can give you confidence and make you feel like a new person. When that option is taken from you, what do you do? I attended a Look Good, Feel Better workshop a few days after my first treatment. I was asked if I minded being the wig model. I didn't mind in the slightest, at least that way I got to see what I looked like in various wigs, scarves, bandanas. I didn't look like an idiot, so that was a relief. I'd already decided that wigs were not for me, it's also too damn hot in Queensland for wigs in my opinion. I bought three bandanas and that would be my lot. Within a week of my first FEC treatment, I no longer needed to shave my armpits - yay! Hair 'down there' also went within the first two or three weeks. This made me very happy, I hate bikini line maintenance! The hair on my head started to fall out after two weeks. Just small amounts at first, then you could pull out chunks if you really wanted to, or if you are my husband. He was on his way back to work when I told him it was really starting to go. He gently grabbed a small chunk of my hair and pulled. The whole lot came out. His eyes widened. His mouth dropped. The apologies started flowing. He only expected a few strands to come out, not the whole handful. I think the fact that I was laughing made him feel a bit better. My scalp had started to hurt when I touched my head and I was starting to leave a blanket of hair on the sofa. Two weeks and four days after my first treatment, I woke up to find a rather ridiculous looking bald patch on my left temple and a very thin covering on my right temple and noticeably less volume everywhere else. I looked like the recipient of the worse hair cut in the world. I decided that if I didn't cover it up I would get more stares than wearing a bandana. I hastily covered my hair and off we went to school. I got home, got my husbands hair clippers out and proceeded to shave off my hair. It was the most liberating experience. I usually cut my husbands hair, so doing mine was rather fun. A few strokes in I did wonder what the hell I was doing. Once it was all gone and I'd showered and got rid of all the strays bits of hair I could finally examine the finished 'look'! My bald head actually wasn't as bad as I thought it might be. I felt compelled to touch it for most of the rest of the day. I picked the girls up from school and spoke to them about what I'd done and showed them. My youngest said I looked beautiful. The eldest basically asked me to keep my bandana on at all times! When my husband saw my head, he was gutted that I didn't have a weird shaped head. Obviously the name calling started after that, uncle fester, slappy, kojak. My eyebrows and eyelashes took a lot longer to disappear and I finally stopped needing to shave my legs after about four treatments. Taking a small amount of control over the things that's you really can't control is a win in my book. Having no hair has not really bothered me. I get a few odd looks, but I'm sure I got them when I had hair too! The girls aren't bothered by it and neither is my husband. I'm sure this has helped with the way I feel about my hair, or lack thereof.21Views0likes19Comments
Meeting with Pharmaceutical Company Eisai
On Tuesday 16 September I represented BCNA as a Consumer Representative as a guest speaker at a luncheon being part of an internal conference run by Eisia, Eisai is a global research orientated pharmaceutical company committed to improving the health and all individuals worldwide regardless of wealth or geography. A drug called Eribulin is soon to be added to the PBS. It’s a monotherapy for advanced disease in patients with locally advanced or metastatic breast cancer who have progressed after at least two chemotherapeutic regimens. To qualify for its use, prior therapy should have included an anthracycline and a taxane, unless patients were not suitable for these treatments. Eisai is new to Australia and approached BCNA to send someone who has advanced breast cancer to share their journey. I was honoured to be asked to represent BCNA and myself. I addressed a group of 20 people, some local, some from the UK. The group included Doctor (researcher), Brand and Marketing Managers and Medical Detailers (sales reps to doctors). I have metastatic bone disease in the sacrum and spine as well as metastatic brain disease and have lived with cancer for 8 years. Eisai were keen to understand my relationship with my Oncologist. I said that over time it had changed. When I had early breast cancer, it was a formal doctor/patient relationship. Now that I have Advanced Breast Cancer for a long time, its more of a collaborative relationship as I understand my disease, body and do my homework. Always looking for something that will continue to give me quality fo life. Fortunately I paid $15K for Kadcyla, That combined with stero radio surgery to the brain, my disease is in check and its the first time in ages that I feel I'm not a tightrope. It maybe a honeymoon, but I'll take it. They wanted to know if I had treatment options. I am a private patient and I have always been given options. Another question was navigating the hospital system. Overall I have not had too much trouble except for the Austin Hospital when I had radiotherapy on my spinal cord. Radiotherapy had only moved from the Repatriation Hospital in Heldelberg and their staff were less than satisfactory. I would suggest that its probably better now but first and foremost patient care comes first, not massages and painting classes. I am now at Peter Mac for radiotherapy. Question was asked re Breast Care Nurse and oncology nurse support. I for one have never met a Breast Care Nurse. I have a wonderful relationship with my oncology nurses who are very helpful and supportive people. They also wanted to know who else I relied on. I have two wonderful friends who have been my chemo buddies for 8 years. I love them dearly. Being a pharmaceutical company, they were keen to learn about my side effects and how I deal with them. They have been numerous side effects over the years and depending the medical regime, sometimes I felt overwhelmed by side effects. These included chronic pain, chronic fatigue, irritable bowel (diarrhoea and gastric reflux), peripheral neuropathy, hand and foot syndrome and migraine. Today I have peripheral neuropathy, dry mouth and a runny nose. Kadcyla is a much gentler drug. They also wanted to know other therapies, support groups to cope with the disease. I have and now will do again Palliates to increase my core strength in conjunction with exercise in water. I have always walked and have a very balanced diet. For support I spoke about BCNA and the online network. They wanted to know what the emotional game changers were throughout my journey. From the outset I told the audience that living with cancer for a long time, I have totally accepted it and taken ownership of my disease but early days I treated cancer as an alien and I was going to defeat it. Hereunder is the list. Game Changers over journey 1. Being diagnosed with breast cancer 2. Being well and taking poison making you feel sick 3. Losing hair 4. Being thrown into menopause 5. Being diagnosed with Metastatic bone disease - morality really kicks in 6. Your life is now in a holding pattern as it’s dictated by “cancer” which is king. 7. Giving up work 8. Cashing in my superannuation 9. Being diagnosed with metastatic brain disease and terrified what this would mean to my quality of life. 10. Going on a disability pension. In summary, I really enjoyed interacting with people in a work environment again and didn't feel awkward telling my story. Eisai were very welcoming and thanks to Carlyn Villani, Brand Director fo Eisai for thinking of BCNA. Feedback was that they got a good insight from the patient's perspective which had not been previously considered. They are now more empathetic and hopefully gives them a more rounded approach in their work. Karen Cowley BCNA Consumer Rep1View0likes2Comments
Hair is gone
Well a full week of work was achieved and another birthday came and went :-). As I was going to lose it my hair anyway I thought I would have a charity drive for the Cancer Council and let my staff have some fun shaving my hair off and give me a Mohawk. Last night I was thinking OMG what have I done agreeing to this I might be that small percentage that get to keep their hair. Well fast forward to this morning and on day 10 the hair was coming out in droves this morning. My awesome organisation in 3.5 days raised over $600. I feel very blessed where I work as I am well supported and cared about. Mind you I think some of my staff had just a tad bit to much fun in this process - the clippers over the ear was not a highlight for me lol. Statements such as "you look so much younger" and my response "yeah that's cause old people do not have purple mohawks". Rather endure my hair falling out by myslef I was surrounded by supportive, caring people who through their efforts made the process almost enjoyable. I thought this is ok and then I went to go home. Well.......let me tell you a Mohawk this height does not fit into a car very well so I had to drive with my head on the side. The amount of people in their cars who pointed at me and laughed was much more than I thought. My particular favourite is a car with a group of young men in it that yelled out "hey granny your to old to have a Mohawk". Ahh the charming youth of today. So I come home and ask the partner where are the clippers so I can shave the Mohawk off. Response "what clippers" pfft so I had to cut most of it off with scissors until I track down some clippers. With no hair I can now try on the wig to see what its like. Still needs to go to hairdresser for personalisation but I may be ok with it but it will be hard to choose between the wig and the cool hats and scarves I have. Too many choices lol. So other than some exhaustion, couple of ulcers in the mouth and sore bones I'm feeling pretty good. The weekend has been booked for sleep so I can get through another full work week. 9 days till next chemo treatment - am not looking forward to it but fingers crossed if I only get 4 days per 3 week cycle then I can survive this horrible treatment. Hello weekend goodbye working week :-)1View0likes7CommentsHome At Last
Hi Girlies, finally home after being in hospital all week with neutrpenia. Felt like a bit of a fraud to be honest as I physically felt fine but my neutrophil levels were very low. I intially went to my gp last Saturday with sore a throat & was prescribed antibiotics for tonsillitis. Went back on the Monday for a follow up and my throat really wasn't improving.My gp rang me that evening & advised me to go to hospital. Iv been there all week but im now home. Meant to have my 2nd chemo on wed but may have to postpone it a week if my levels are too low. I just want it all over and done with, the sooner the better. My hair is also coming out in large clumps now my scalp is so frigging itchy but tomorrow is operation GI Gillian and meet my new friend Amanda (my wig :) ). I'll be sure to introduce you all to her soon :) xxxx3Views0likes3Comments
Online group
Hi Daina, I am so pleased that I was approached to join such a wonderful group. My journey like a lot of others has been 12mths in duration. I was diagnosed last March, had a lumpectomy in April followed by Chemo & Radiation therapy which ended 28 November. Unfortunately my treatment did not go smoothly after having a reaction to the Chemo I developed 'Sweets Syndrome' - it took 5 days for Dr's to guess what it was & then receiving confirmation another 5 days on - only treatment was steroids, was hospitalised for 2 weeks to be discharged on oral steroids only to have another reaction (at this stage was so over it) but as ever everyone around me keep my spirits up but was extremely hard at times especially when your husband of 34 years walked past me as he did not recognise me (that was really hard to take). Never mind that is all in the past now - I need to have an aspiration procedure next week to alleviate pain that I am still experiencing. All the literature that you receive seems so overwhelming in the beginning but was a massive comfort when something happened. I am not a vain person but I lost my hair 2 weeks into treatment & it is one thing to be told it will happen but the reality of it actually happening was hard to deal with - now have a full head of 'wavy' hair which I did not have before.2Views0likes2Comments
look good feel better program etc etc ...:)
To those who have no hair or will be loosing hair.... please go to the Look good feel better program! I went yesterday and it is fantastic! Though the video they put on before hand made a few of us cry :( but it is well worth getting out of the comfort of your bed- putting some clothes on- slowly getting in ur cars- hobbling to the room where you have bookt it as by the end of it you are laughing, hugging, and all made up from the free makeup!!!! dont you love FREE stuff haha and all with a friend by your side which you can take :) I took heaps of photos, and I really think the pink wig look fabulous on me haha! But AGAIN I was the youngest there! aaarrr but it was great to chat to people who are going thu the same thing as me. Only is this room can you get away with the question.."are you constitpated?" haha room full of bald heads was amusing as well...we all were shy at the start but once one person took a beanie off we all followed suit. I had such a great time and then tonight going to a "breast friends" dinner support group (my first one) slightly nervous though! wish me luck :) But atleast I have the support of my beautiful fiance going with me. take care all xoxoox1View0likes4Comments
Looking Good, Feeling Better
Hi Ladies, how are you all? I am doing pretty good, round 3 of chemo next Friday and will then be half way through...yay!! I just wondered if any of you have taken advantage of the "looking good, feeling better" programme run by the cancer council? If not, I would definately recommend you see if there is one in your area and take advantage. I attended last weekend and had so much fun!! Firstly, you are with about 12 other women, ALL going through exactlt the same as you, so you don't feel alone, abnormal, or "different" Some till have their hair, some wore scarves, and some (probably) were in wigs! I worem wig, but about 20 minutes into the make over decided to take it off as it was easier with my bald head. I whisked it off and one of the volunteers nearly fell over, she thought it was my own hair!! I had a lot of laughs, picked up some great tips, had a full makeover and came away with about $400 worth of free skin care and make up, all top of the range, este lauder, cliniquie, clarins etc! But the main thing was, I had fun! I was also blown away by the fact that these workshops are run in every state, in 22 countries in the world, and in Perth alone this year, there are 96 workshops being run. It just shows, HOW MANY women are undergoing chemotherapy! The volunteers are all beauticians and give their time freely and all the make up is donated by the cosmetic industry. I just can't speak highly enough of the programme! Anyway girls, I washed my hair last night...so time to go put it on!! And off to the shops....Have a great weekend...keep smiling...and stay strong :) xxx1View0likes14Comments
Highly recommend Tracey Scone Wig Library, Darlinghurst, Sydney
In anticipation of upcoming chemo, I visited the Tracey Scone Wig Library yesterday. It's behind St Vincent's hospital in Darlinghurst, in a sweet terrace house. The library is not open every day and you need to make an appointment. All details on the link. There is a large choice of wigs, styles and colours. Gloria and Belinda were incredibly helpful: not only suggesting styles but advising on wig care etc. It was such a supportive environment. And no problem at all to play with different looks. The wigs are completely free and you can keep until your hair grows back. I felt rather confident when I left. I decided on BIG Italian hair. Colour and length similar to my hair - but volume is more! Tomorrow I go to a Look Good Feel Better workshop and want to learn how to draw big eyebrows to match the look!
