The Foxs Lady
Comments
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Hi Linda... I've exactly the same diagnosis as you. Grade 3, stage 3, one lymph node cancerous. I had to ask the question... the oncologist punched in the numbers into the pc, along with size of tumors.... results were 75% chance of a five year survival, not too bad. I was told that with triple negative, if we can get past the five year mark, our chances of survival are better than hormone receptive cancers. Hope this has helped. Cheers Jo0
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Hmm, reading all the comments I feel stress as a precursos seems to become a common theme, also in my case. Or; is life often so stressful that it's almost unavoidable to have a stressful period prior to a diagnosis like this?
Apart from not meeting many TNBC patients, I also see that often I'm one of the younger ones at every treatment (even at 48!); the majority of oncology patients seem to be well in or over their 60. I must be a very bad person; I'm a bit jealous of anyone having had so many more years without this worry. I do realise though that I'm also lucky it hasn't struck much earlier.
3 years of stress after immigrating to Australia (and then getting Immigration to play havoc, being stuck in a job where bullying was part of the deal, and my husband having to re-sit all his medical exams 25yrs after he graduated) we were just starting to get ourselves sorted, and enjoying ourselves.
At the moment it feels like chemo is all I've ever done, and will be all I ever do from now on. The end of the tunnel is somewhere, but I can't see it at the moment. And it only leads to radiation... but at least that's only 6 weeks.
Sorry, am a bit sad at the moment.0 -
Big hugs jacky... I have been fighting tnbc for nearly 3 years now. Handled my first diagnosis so well .. But this advanced breast cancer business is tuff! Xx0
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Hi ShereeJoy. I cannot imagine how hard that must be, having it hit again. Do you have to start treatment all over again??
I guess one of the things that make it so hard is that at the end of treatment (which in itself isn't nice to say the least) you don't know you're done, clear. The ongoing fear... and in your case it has come back. I'm so sorry. And I'm sorry for whinging about myself...
But thank you for the big hug! Big hug for you too, hope and pray it all goes well!0 -
Jacky - I so hear you my friend. The stress theory irritates me a little because it always makes me feel if only I had have managed my life better....if only I hadn't done this or that. It makes me feel like I am somehow responsible for the manifestation of my cancer.
I also have had some people tell me it's I undealt with childhood trauma (I didn't actually know I had had any) or that it's trapped anger.
You know what .....I think that stuff is all crap. For me it's pure science. If I look at Mother Nature and she is full of anomalies and irregularities - and I think this with a combination of a saturation level of chemicals and genetic predisposition - and here we all are with TNBC. I also am the youngest at breastcancer groups and chemo - and I am 51.
Where do you live? I would love to catch up for a coffee sometime. I am about to do my last chemo tomorrow.....0 -
Janey, I hear you, I've been through feeling responsible and guilty for getting cancer through not taking better care of myself. The truth is we all have stresses in our lives and sometimes circumstances are beyond our control, it is just how we react to those stressors that is the difference in what chemicals are released in our bodies. But we can only do what we can with what we know and what resources we have at the time...so, I try not to beat myself up about it any more. Sure I could have handled situations differently, definitely it would have been better if I had considered myself as important as all the other people in my life that put my needs as a priority. I think the diagnosis of triple negative makes us all ask the big question...WHY?? We can't blame it on hormones or receptors or genes, things that are out of our control so we start coming up with other hypotheses. I know people who abuse their bodies with drugs, alcohol, cigarettes, have dreadful diets or are anorexic and don't exercise and they haven't got breast cancer, so why do I? Maybe it's environmental factors? Perhaps it is related to childhood traumas or past lives, karma or unresolved emotions? I was told when I had genetic testing that even though I didn't have the BRCA1 or 2 genes, it didn't mean I didn't have another gene as they are quite sure there are several more that are yet to be discovered and my specimen will be stored and tested again when they do find those other genes. And as you say, Mother Nature is full of anomalies and irregularities. And here we are with TNBC...shit happens?? For me, with what I now know about health and nutrition, I am just trying to take care of myself better through a (mostly) healthy diet, fresh air, sunshine and moderate exercise but most of all spending as much time as I can doing the things that make me happy like spending times with family and friends, connecting with nature and spirit, singing, dancing, laughing and loving plus avoiding toxic relationships and situations as much as possible. I wish you and all the other ladies who are still on treatment all the best with the rest of your treatment and beyond. It's great that everyone is able to share their experiences and thoughts and how they are feeling. We are not alone. Take care of yourselves xx
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Hi Janey, I'm with you: I didn't cause my cancer! Maybe polution and our highly refined foods play a role, but not how I manage my stress or whether I had a happy childhood or not. I am NOT to blame. What I have in my own hand is how I cope with the diagnoses and the treatment, and I'm doing my best. That's where my responsibility lies.
I would love to catch up! I am in Albury/Wodonga (NSW/VIC border), where are you? Hope not too far away... Is there any way to contact one another without writing our (email) addresses on an open internet page? I'm new to this.
Good luck with your last chemo tomorrow; will you still need radiation after? Love to hear from you again.0 -
So sorry jacky if that came out wrong I totally agree even going through it once is "shit"!!! And with tnbc we all have a high chance of reoccurance... I was just unlucky twice lol but like jewel has said to and she took the words right out of my mouth! The sexual abusers, the drug addicts the smokers and heavy drinkers... All of which I don't do and here I am with cancer. I too have been told brca 1 and 2 are not the only genetic cancers. Can't wait until they find the rest as this frustrates me the ladies who get to take hormones and herceptin blockers and complain about it... I only wish I had of had Something post treatment first time to give me a better chance of it not coming back! You are left High and dry post chemo and radiation and surgery for tnbc. This is why I personally raised $14000 and my team for "mothers day classic" raised $28000... I am desperate for more research in triple negative. We need it now before it is to late!
I am hanging on for better days I want to grow older with my kids. I am only 38 with a 5 and a 7 year old son who this diagnosis has had to relocate to Brissy (1000 or more Km's from home) and hubby is commuting to see us on a 2 week on, 2 week off basis because of our business (a Newsagency) that we are struggling to keep afloat ATM 0 -
Hi ShereeJoy,
I wasn't offended at all by your prior posting, don't worry. Just feel for you that you have to go through it all.
I agree; I wished we could all take Herceptin or Tamoxifen and reduce our chances... but I also understand it that women on that who have side effects think that sucks; it does! Anyone with breast cancer has a chance of a recurrance... ours is just bigger
I will have a meeting with a genetic team in february; they only come up from Melbourne 4 times a year. I don't expect much from it, and even less reading the postings here.
Wished you were closer by, I could pop around and lend a helping hand... must be hard to miss your husband half of the time, juggle 2 young kids AND treatment. Hope you have lots of friends and family to help out. Big hug!0 -
Thanks Janey.
You've helped me make the decision to talk to my oncologist next time I see him - which will be in a couple of weeks time.
I think I'm just terrified about not being able to have any follow up hormone therapy - I guess it would give me more peace of mind if I could. :-(
Linda0 -
Hi, my name is Deanna. I have been looking for a some sort of group online to join. My family recently moved to Australia from the States. My husband is an Aussie and I'm American. We lived in the States for 23 years and decided now is a good time to live in OZ. I am a 7 year BC survivor. I was diagnosed with triple negative as well as stage III C, which from what I can tell is grade 3 stage 3 here. I was the 3rd sister out of 6 girls in my family to be diagnosed. 4 of us have the BRCA 1 gene and 2 do not. I've had 1 sister die from breast cancer 10 years ago. We live in St Marys NSW. Now that we are settled somewhat, I am looking for ways to meet and make friends.
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Jewel - so loved your post.....We have so much in common. I have these beautiful but wild siblings who indulge in all the vices I have avoided .....and I have spent years looking down my yoga polished nose at them, smugly rejoicing in my Byron Bay, yoga, vegetarian, organic, lifestyle. It was unbelievable to me that I was then diagnosed with such a serious form of cancer and my wonderful siblings are continuing their lifestyles healthy as oxes. I too am doing diet (kris Carr, Percy's Powders and everything green), exercising, yoga and making myself look for the joy in all the small things. I did FEC chemo for the first 3 weeks and was so so,sick. One day toward the end of the really bad 10 days, I went out into the backyard, sat in the sun and ate an apple. I cried with pure, unadulterated happiness and how good it was to just do that.
Jacky - unfortunately I am staying in Sydney. But would so love to meet up as I think we'd have heaps to talk about. I do my last chemo tomorrow and then start radiation.....but would love to drive down and have a weekend in Albury/wodonga where I have a cousin and catch up with you. It must be so hard to have just immigrated and not have your family you poor darling. Please contact me anytime, I don't mind putting my email here - purplehat1961@****
Deannna - I am in Sydney and would love to catch up. Please email me and we can organise a time. Hope all is good for you and your family in your new home.
Jane0 -
I am glad you weren't offended. I have been told I have 12-15mths to live so my prognosis isn't great... But I am a Taurean and don't give in too easily. I have to fight tooth and nail for these kids they are my world!
As for the side affects for tamoxifen etc... Being round I get all of these side affects in full swing. I did get my period back first diagnosis but as soon as I hit this disgnosis I have struggled to get one period and the hot flushes are so intense. I think I have gone into full swing menopause and they say when it is forced when you are young like this it is very intense. And I am doubtful I will ever get them back this this time with ongoing treatment like this. I have just had my 21st chemo today.... And weekly is so so itense I have been in hospital so much since April so instead of 3 Fridays on, and 1 off a month I have now been changed to 2 Fridays on And 1 off and start Again with 2 Fridays on And one frlday off Again. His aim is to balAnce a better quality of life for me as time goes on as I am so sick from chemo and have had offer life threatening challengesimd a significant blood clot in left arm plus extemely low platelets causing Lots is bruising down my legs and most recently cellulitis in my Lynphaedema and was so close to going to septicaemia a bad blood infection. Some days I cask like a walking time bomb. Ok need to stop winginbb n0 -
Fell asleep. Goodnight lovely lol0
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I found the journey with chemo a great learning curve. I will tell you what I found useful as I am sure many others will as well. What worked for me doesn't necessarily work for everyone.
I hope this is not too shocking.....but I would have given anything to have this knowledge before I went through the process instead of struggling to find out on my own.
I was fortunate that I didn't have young children to look after.....and most importantly, I was able to stop work.
So here goes:
1. pawpaw ointment to be used around your mouth and nose area - I also used the same ointment in the "nether regions"
2. strepsils to suck on when my throat was sore
3. chuppa chups to help gain saliva in my mouth when I felt like I was too tired to swallow
4. I had hypnotherapy to ensure that I slept and I did - 18 hours a day minimum once the steroids got out of my system. So usually day 3 to day 9 was sleepy time.
5. a note book and pen to have beside the bed so that if anything notable happened I could write it down, but more importantly as I remember something I needed to do, I could note it down so that when I was up and around I could follow it through.
6. air conditioning of my bedroom so that temperature stayed the same (even if I didn't) and it also assisted in shutting out noise.
7. feather pillows (lots of them), feather doona and a dark room....I called it the cave and off I went.
8. Austar in the bedroom so that I had something when nothing was there and I could shut out noises from the outside if I wanted to.
9. bottled water to drink and drink and drink.
10. kleenex flushable wipes - big pack for my bathroom, but smaller one to carry with me....just for a softer care of the "nether regiions".
11. stubby bottles of coke at room temperature....to rinse my mouth out when I got thrush in the mouth - this was unwritten advice I got from a chemo nurse.
12. sudoku (easy) or something - the book was carried with me everywhere and I wrote all of my messages in there, phone calls etc, and scribbled things when I needed to remember things.
13. magnifying glasses from one of the reject type shops......I had only recently had my prescription glasses done but the chemo affected my eyesight and these cheaper options helped me to still see.
14. put your mobile phone on silent and contact as many people as possible and ask them to text you rather than call. Update them via texts.
15. accept any help that is offered. Don't try and be super woman. I had one friend who watered outside plants for me before I even got out of bed. The same friend used to call by the house the week I was cytotoxic and take my washing to her home and do it separately for me. So a separate clothes basket in your bedroom is a good idea for that period.
16. an electric razor from Big W or somehwere so that you can keep your hair trimmed and tidy when you lose it.
17. if you know someone who can knit or crochet and they offer to make you a beanie or two, then accept. I got a black one and other colours so that I could still co-ordinate my clothes.
18. Panty liners for the first couple of days after chemo when everything seems to melt.
19. a block of chocolate - just because
20. I am a carer for my 82 year old Mum. We had a cleaner in once a week for 1 1/2 hours to keep Mum's area and the main house clean. My area was left to me.
21. ear thermometer to monitor temperature
22. a good A4 size plastic container with a well sealed lid for medications - and then a good felt pen to write on the box what the medications are for.
23. If you don't get a port in then when you get the canula in, ask for a sleeve to be put over it to help protect your veins.....
24. When I was in my sleepy faze, I was never woken for visitors....unless they were from out of town.
25. Get some really long thin scarves and wear those around your head.
26. I rushed in and bought a wig.....and never wore it.
27. Clinical masks for when I used public transport and I was at risk (day 1o to 14 after chemo was my most vulnerable time and when I also felt really good).
28. If you suffer from cold sores or genital herpes make sure you get prescription for anti-viral medication.
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