Calling all triple negative breast cancer patients in the UK
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HI, Lily,
I am so glad you got your routine figured out and it has made your life easier, that's a real accomplishment. Anything that works to get you through your day is great! I did not have radiation treatments but understand most people do not have too many problems with it, mostly the inconvenience of the many return trips to finish.
I think the pain you are having following chemo is normal for some people. I also had it, to me it seemed as if every place in my body where I had ever had an injury or had a weakness was where the pain would come from. It does get better though.
I am glad your eyebrows and lashes are coming back, that is a good thing. I was not someone who enjoyed wearing a wig, so when my hair was still very short my husband and I went to a Christmas party and I did not wear a wig. When husband first saw me he said "You are really going and not wearing your wig?" I didn't and my hair (or lack of it) was a big hit with everyone, and I did not wear my wig anymore. I am often tempted to have it cut back to that length because it was so easy, wash and wear!
I'm sure you will adapt to your new clothing requirements, did you gain or lose weight? That will also probably change over the coming months.
I also wish for all of us that we can be the best we can!
Talk to you soon Lily, Mary
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Hello everyone,
I just wanted to wish you all a relaxing weekend.
Kath, I shall be thinking of you as you wait for Monday to start your radiotherapy. You might find it useful to have a look at Chris Woollams paper on radiotherapy before starting. It is entitled "20 tips for people having radiotherapy". It makes interesting reading. You should be able to find it by Google.
Hello Rhonda, I see that you are nearly finished with your chemotherapy. Just hang in there and it will soon be over. Did you have any luck with getting the results of your genetic testing?
Gina, can you remind us when you have your next session of chemotherapy? I am sure lots of people will look at Miss World, but that is not my cup of tea. We have had a case of a woman here in the UK being told she had to wear 4 to 6 inch heels at work and when she refused she was sent home without pay. Since then lots of women have come forward to say that they have also been told to wear such heels. They have also been told to wear low-cut clothes, short dresses and skirts, dye their hair blonde and to keep putting on the makeup. If women want to be taken seriously, they have to be more than their body parts.
My guiding principle in life is to think for myself.
Pam, sending you my very best wishes.
Chris, I do hope all is well with you and that you are still looking at the thread. We do not know whether you have started radiotherapy. The thread does need some fellow Brits, such as you, Amanda and Maggie.
Marias, buena suerte en todo lo que hace. Bienvenida en este grupo.
Wishing you well.
Sylvia xxxx
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Hi, Sylvia,
I did get through the 4 Pillars of Cancer. There is a lot of reading under that heading! The diet of course, very important. I have put a link to the diet part of the post.
http://www.canceractive.com/cancer-active-page-link.aspx?n=978
One thing that does bother me is that in all the things I read about diet, there are so many contradictions. For instance, in the acid/alkaline foods department, it rather depends on whose text you are perusing. So I try to get as close as possible to staying mostly alkaline. I do fudge on it, for instance, in this chart bananas are considered an acidic food. My day is not complete without a banana, so I have it. I have seen charts that say tea is very acidic, but green tea is important for us, right?
Environmental Causes of Cancer is a long read, and once you are on the page, you can link to other sites that will also keep you busy for a while! I will link to that too.
http://www.canceractive.com/cancer-active-page-link.aspx?n=980
That is all I will link to for now, and will put up more later.
The part of the post with the heading "The Dangers of "Wonder" Immunotherapy" is also a very long link and I have not made it through that one yet, will probably tackle that next. Then I will post it too. I know that everyone is busy trying to just keep up with life, but perhaps by linking to these posts someone will get some good out of them.
President Trump has been very busy this week, some newsperson said yesterday no president has ever hit the ground running as fast as he has, it's hard to believe all these decisions can be really thought through. I continue to be amazed at his energy. We will see how all these things turn out! I hope he and your Prime Minister will get along with a good relationship. I'm glad to see that Winston Churchill's bust has returned to the Oval Office.
I have to stop for now too,
will talk again later, love,
Mary
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Hi, Gina,
Briefly I am back here to answer your post, thanks for feeling incomplete without me!!
Why do I live alone? I have done so since my husband died, my parents have been gone a long time, at one time before I was married I lived with my brother for a period of a few years; but he is gone too. I have 2 brothers and a sister, but they have families and children of their own. I have single friends, but I have noticed as we get older, that it is difficult for 2 or more women to live together. Mainly because we all want to be queen of the house. So I live nearby several small towns where house after house is inhabited by one elderly lady, living next door to each other. I used to wonder why they didn't combine forces and live together, but I know why now. We get used to our own ways, I'm afraid!
I do have a lot of frogs here, but I don't put them in my pocket! I have a small pond just outside my door, with a waterfall and one very old, large goldfish. Frogs love it, there are even some spending the winter there, sometimes you catch a glimpse of them on a warmish day, they are very slow-moving and thin right now. I love frogs! An iguana I would have to keep in the house in the winter, I think, not ready for that, no matter how entertaining. I saw a lot of beautiful iguanas in Aruba, every color you can imagine. I was told they take on whatever color they are next to.
Singles bars and cute guys, hmmm. About as close as I get to a bar is if it's in a nice restaurant, but not feeling too flirtatious these days; perhaps I just need to hang out with someone like you! Haha
Glad your hand is better, and hope your next Docetaxel goes well next week. The chemo does do a job on our wbc and rbc, we also hope it is doing its' job on any stray cancer cell that might be floating around!! usually my wbc would be very low after chemo too, but the shots would really help.
I will be talking to you again soon, Gina!!
Thanks for all the pics and prayers, all good, Mary
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Hi Sylvia,
Genetic tests were all negative!4 more weeks of Taxol.I feel like the breast with cancer feels tender,has anyone felt that way on Taxol?Also, if I press my upper chest it feels tender.That is my only pain.
Rhond
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Hello Sylvia,
Oh your words are so sweet, thank you so much.. same goes to you.. your words and thinking process makes a lot of sense and always very encouraging.. you are a fantastic person.. helping so many of us with so mich devotion and for so long!!
You know I am struggling like all others combating cancer or other serious illnesses. . And in order to deal with that I always put things into perspective, which then helps me calm down and visualise and quickly understand when things impose themselves no need to debate but rather manage! I alwayd read with a lot of interest your messages and I thank you for giving me more perspective and food for thought!
Mary, Hanieh, Pam, Kath, Gina, Rhonda, Maggie, Adagio, Val, Chris and Marias.. keep going and stay positive.. put in your head most women survive this!
Special thank you to you Gina.. thank you for the calming prayers and positive attitude ..
i am learning from all of you!
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Hi Sylvia, Mary, gmmiph, adagio, 4everStrong and all
Sylvia, my friend seems to be really strong. In fact, being just 27, she seems to be far stronger than me as a 34-year-old. I pray she stays strong to the end and then lead a happy life for ever. Her surgeon is strongly against double mastectomy despite her insists.
Mary, we are having some rainy days now but I hope we have some snow, too. I love snowy days. From how you describe where you live,I guess you live in my dream place. I love to live in a place far from all the pollution of a big city like Tehran. Having a pond and a waterfall near one's house is a real blessing. I love frogs , too.
adagio, thank you so much for your kind words about my daughter. Her name is Faeze. My biggest wish in life is to see her grow up, succeed and thrive. I really need to live long enough to see all these.
4everStrong, life will get back to a better phase. Yet, the ups and downs are far more likely to be felt than before. We get a lot more sensitive and any aches may terrify us. But we still have our times of joy and pleasure. Praying is what gives me peace of mind. I pray 3 times a day and whenever I feel nervous.
gmmiph, thank you for your nice pictures. You have a really nice character.
To all going treatment, my best wishes and prayers are sent to you.
Love
Hanieh
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Hi Sylvia and everyone again
It's 1:47 am and sleep doesn't come to me at all. As I told you before my father was diagnosed with colon cancer one year earlier than me and tomorrow his blood test results are ready. Why I can't stop worrying? Maybe it's just because of my friend's recurrence. My next check up is also in a month and then with the comming of the spring we will celebrate a new year. I hope everything goes well.
Today we were at a family reunion and when I saw how my cousins of the same age were carefree without any agonies of checkups and what ifs were leading their normal lives, I felt dubious feelings. I could be happy to see them healthy and happy and at the same time feeling a shame or an anger with myself, though there is no blame on me.
I know this will pass too. But I wish I manage to keep poised and happy and yet not carefree about my friend and also stay cool when I see I have a suffering that no one around has or knows about. I really can't stand seeing others suffer. So I always wish health and happiness for everyone.
Sorry if my statements may not make sense. But my mind is in a bad struggling situation and English is not my mother language and maybe full of mistakes.
Love
Hanieh
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Hi Mary,
It is good to see that usual perk in you back again! I like it!!!
Here's a little kiss from me to you and all the wonderful ladies on this thread!
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Hello Sylvia and All,
Hope you all are doing well,
Its been awhile since my last post and I would like to share the latest update about my mother status with you. My mother finished the last FEC cycle two week ago and will start the first Docetaxel after a week.
She is more positive now and trying to get back to normal life, although it is not that easy for her but she has the will which is for me was very important. We have started a new activity together where we spend most of the fun time together, she is helping me learn sew with several techniques
.Hope she will respond positively to the first Taxotere
.Wish you all good health,
Best regards,
Lamis
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Hi, all,
The 3rd pillar in Chris Woollams' post on Cancer Causes is on Infection as a Cause of Cancer
http://www.canceractive.com/cancer-active-page-link.aspx?n=979
The 4th link in Chris Woollams' post is on Stress, Mental State, and Cancer.
http://www.canceractive.com/cancer-active-page-link.aspx?n=981
Good article here, I do think there is a lot to this. Extreme prolonged stress does so much to our bodies including weakening the immune system and allowing bad things to proliferate.
Hope everyone has a very good weekend!
Mary
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Hello All
Hi 4everstrong and all others. So glad we are keeping our sisterhood going.
For all currently or just starting treatment, follow this thread, and if you have some moments go back a few pages. You will find some great tips for going through chemo, surgery and radiation. You never know what someone else has written that will apply to your situation at the moment.
My cortisone shots have really helped my knee situation. That means more mobility. I'm back to daily walks. A total knee replacement is in my future but not yet.
So sorry Honeytagh that you are going through such trying times. Know that I think of you often. So glad to see your post 4everstrong. I'm keeping a positive outlook, and yes it's hard with all the ailments. When I feel down I think of others worse off, with no support etc, and it helps me to focus on the Now. I won't borrow from the future worries. They will come whether I'm here or not, so why take them on now?
Gentle hugs and waves to all.
Maryn8 yes like Sylvia we miss when you don't post. You are the 'anchors' I feel of this thread, though we all contribute in our own way.
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Hello when we are sick is nice to see the lives grow anywhere, this is in my balcony
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Marias - those birds are so adoreable - nature is truly a great inspiration to us all and brings a smile. Thanks for sharing!!
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hi everyone
I was glad to hear that other people have pain post chemo! Some days it feels like my whole body is aching and I do have osteoarthritis as well so I need to keep focusing on that and be positive. It is so scary some days tho! I have a 6 hour drive to Adelaide. I have a 6 hour drive tomorrow to Adelaide to start radio which will be interesting. I'll take some pics on the way and post them. Today is not a good day as I am very sore so hopefully tomorrow will be better
Cheers
Kath
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Hi Mary,
Thanks for your post and links which interests me especially the link on stress. The link article on Cancer Active is very long and i get cross-eyed from reading it, Lol! but the info i like best is as follows:
"vi) Stress management courses have been shown to significantly increase survival times. Medical Schools at Harvard, UCLA and the Mayo Clinic amongst others have research that shows:
a) Diet can reduce stress hormone levels and increase survival times.
b) Fish oils can re-lengthen the shortened telomeres
c) Bioactive natural compounds like curcumin, garlic, ginger, resveratrol and also aspirin can reduce the COX-2 effect.
d) Yoga can reduce cortisol and stress hormone levels.
e) Meditation can reduce stress hormone levels and increases survival times ´significantly´.
f) Stress management course including some of the above but also counseling, increase survival times ´significantly´."
Please, You and Sylvia should continue discussing these things so that we can learn something from them. You both are more knowledgeable and experienced on these things. Thank you so much for being our "inspirational journey guides".
I am gonna try to read on the rest of the artiicles.
Talk again soon,
Gina
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Hi Valstim,
You sound very positive and cheerful in your last few posts. I am really happy for you. All things seem to be getting better for you including your knees. I wish your future knee surgery will be a success so you can have complete body healing.
Please update us on this.
Take care and regards to your family.
Gina
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Hi Kath,
I am so sorry to hear about your body aches and pains, know that I am in your pocket. praying for a duccessful rads therapy for you.
You can do this.
Hugs,
Gina
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Hi marias,
I hope everythings goes better with your treatment. I wish you good luck. Thank you for the nice birds and nest pictures. It reminds me how beautiful God's creation is and that there is always hope of a new life for every living being.
By the way, I like your Miss Colombia candidate in this year's Miss Universe pageant which will be held here in Manila tomorrow. She is one of my favorites along with Miss Venezuela, Miss Brazil and Miss Uruguay. Miss Great Britain and Miss France also seem like strong candidates.
Our own Miss Philippines is of course popular but i dont want her to win. No host country should win, even if there are international judges.
Please watch it tomorrow.
Gina
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Hello Rhonda,
I was glad to know that your genetic tests were negative. That is one less thing about which to worry.
I would think that tenderness might be part and parcel of going through chemotherapy, but if you have any concerns please discuss them with your oncologist.
Fond thoughts.
Sylvia xxxx
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Hello 4everStrong,
Thank you for your post and your kind words. I am only too glad to help and shall try to continue so long as I think I am helping and that the thread remains active and meaningful. I do like in depth thoughts. We all have to accept that breast cancer changes us, but as I have said before, it does not have to possess us.
Keep well and keep positive.
This evening I am going to watch the results from the Socialist Party primary. This is an interesting time in France.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
Thank you for your posts. It is a good thing that your 27 year old friend remains strong. This will help her.
I was sorry to read that at 1:47 am you were not asleep. I do hope your father will get good results. It is perfectly normal to be worried when family or friends are awaiting results. I have a male cousin with diabetes and all kinds of problems. I talk to him often and every time he has a hospital appointment. We are as we are. I worry about lots of things, and yet I still live normally.
I hope everything will be fine when you have your check up in a month and please let us know what goes on.
Nobody that has not had a cancer diagnosis can understand what is does to people. It is best not to talk to them about your feelings. I know the people around me that are going through cancer and I talk to them and try to encourage them, but I do not bother with other people about cancer. If they ask me how I am keeping, nearly twelve years on, I always say I am fine.
Try to relax and just do your best with your everyday life, just eat as healthily as you can, have some gentle exercise and above all try to relax and enjoy simple things.
Thinking of you.
Love.
Sylvia xxxx
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Hello Lamis, Kath, Mary, adagio, Val, Marias and Gina.
I was glad to see that you have all been posting and keeping the thread active.
I have had a busy day doing a four page newsletter to the residents here, and going through all my director files to get everything in order, as we get into the end of January and further into 2017. I shall answer posts a bit later, probably tomorrow.
It is true that Cancer Active, Chris Woollams and of course bc.org is full of information. Just take in what you can.what is really worth reading is Chris Woollams and the four pillars of cancer, which I mentioned earlier on. They are diet (poor diet), environment, infection and stress. Just read what you can and do not overburden yourself. I think stress is a big factor and is not taken seriously enough by orthodox medicine. More about all this later.
Wishing you all a good week and remember live the day to the full and enjoy life.
Best wishes.
Sylvia xxxx
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Happy Sunday Everyone,
I haven't had much time to keep up with the posts, but I wanted to check in quickly. Sylvia, I mentioned the joint aches to my MO early on, and he agreed that it could be chemo, menopause, my age, the weather, or all of the above. I do believe it's mostly the chemo, and I'm combating it as best as I can with tumeric/coconut oil "tea," stretching, and exercise. As far as the stretching is concerned, I got a piece of paper that showed me the stretches, but very little support in regard to timing. I've learned that doing the stretches is essential, but if you start too soon, you can cause more pain and discomfort. I may be able to request physical therapy, so I will ask.
Mary, thanks so much for the wisdom about the joint aches. I think it's so helpful to all of us to know what side effects might pass. As far as the wigs are concerned, I am almost ready to debut my very short hair, and can absolutely relate to your husband wondering if you were really going out like that. My answer is the same as yours, "yep!" People really are supportive. They are just happy to see us alive, and we are so much more than our breasts or our hairdos.
I'm not sure if you asked about weight loss/gain, but I was told to "keep my weight UP." Haha. No problem. During chemo I stayed the same, and even lost a tiny bit of weight, while eating anything and everything I could. I think it minimized my discomfort, nausea, and duration of other side effects as much as was possible. I can see that I'll have to cut back on my new eating habits to keep from gaining, but that I might expect to lose some during radiation.
I have been applying aloe gel, which is the only thing I'm allowed to use. I can finally tolerate touch on my chest where my breasts were, and feel lumps and bumps that must be scar tissue, but that I will confirm with the next doctors I see.
4EverStrong, I'm grateful for you sharing your status, and for your encouragement. Ms. Gina, I appreciate your good spirits, your funny posts, and your wonderful sense of humor. And Marias, you are so right that these forums make us strong. By the way, my husband was born in Cartegena, and has been here since he was a baby. We visited once and hope to back someday. He is an amazingly kind and patient husband, who cared for me tirelessly after my BMX.
Finally, I am so impressed with everyone here who posts in their non-native language. I only speak one, and this inspires me to get back to my goal of learning at least one more.
Cheers, Pam
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The Miss Universe pageant is on!
Top 13 includes Colombia, France, Canada, USA, Brazil, Peru, Thailand, Indonesia, Kenya, Haiti, Panama, Mexico, and Philippines!
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Hello Pam, I really like yours husband be Cartagenero. I grow up in this city and was really great and free time to live there. Say hi to him
I like to learn english because let me know about other things, and news that happen in other countries.
Hello Gina, for many years Im be away for the miss universo contest... so this year I dont know who the girls are, but Im going to look them, so I can tell u my favorite.
Hello Sylvia, I envy your ability to read and make each and every one feel more than welcome to this forum.
NOw Im reading the book Dra odile Fernandez Martinez, from spain, the book name is "MIS RECETAS ANTICANCER". and also speak about yoga, natural food, fruit, okinawa diet, mediterrean diet, gerson terapy, and emocional feelings.
Have good night all of u
Marias
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Miss France is the 2017 Miss Universe! She's one of my favorites!
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Hello Lamis,
Thank you for your post and for letting us know how your mother is getting on with her chemotherapy treatment. Your mother must be very relieved to have the FEC cycle of her treatment behind her.
I do hope all will go well with the docetaxel treatment. Is she having docetaxel every three weeks or every week?
It is good news that your mother is feeling more positive now, as I tend to think that a positive attitude does help a person through this treatment.
It is good that she is trying to get back to a more normal life as that is very important as well. I did that through my treatment, but just remembered to keep well hydrated, to rest when I needed and to keep looking forward.
It is good that you have started a new activity together where you have fun time. Good luck with your mother helping you to learn to sew with different techniques.
Be on the watch for any side effects from the first infusion of docetaxel (Taxotere) and let the oncologist know.
I was wondering whether you are in the UK or somewhere else in this wide world.
Keep in touch so that we can guide you through this.
Best wishes.
Sylvia xxxx
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Hello Val,
Thank you for popping in and thank you for your words of wisdom about following the thread. It is important to try to read all the posts, otherwise you miss valuable information and you start mixing up the people who are posting.
I was so glad to know that the cortisone shots have helped your knee situation and that with more mobility you are able to take daily walks.
Thank you for your kind words to Hanieh. She needs a lot of support with here general anxiety.
Thank you for your words of appreciation to Mary and me and thank you for your interesting posts. We can all learn a lot from one another.
Fond thoughts.
Sylvia xxxx
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