Calling all triple negative breast cancer patients in the UK
Comments
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Hello Lou,
Thank you for your post and for your very kind words. I am glad to be able to inspire you.
I was glad to know that you are doing fine on your chemotherapy treatment.
I do hope all will go well on Tuesday when you have your next chemotherapy treatment. Please let us know how you get on. Take it easy because chemotherapy treatment tends to build up with side effects as you go forward. You may feel more and more tired. Remember to drink plenty of water to keep hydrated and to rest when you feel the need. Keep looking forward. You are nearly at the end of your chemotherapy journey.
I was very sorry to read that you were not able to keep your baby because she was diagnosed with Down's syndrome when you were eighteen weeks pregnant.
In a previous post you asked about nutrition. The best thing is just to eat plenty of fresh fruit and vegetables of all different colours. Some call it the Mediterranean diet and others the Rainbow diet. Just make sure that you have a good mixture with an emphasis on green vegetables. Eat the local produce to your particular country as much as possible and emphasise vegetables of the cabbage family if you can. I do not eat any meat or poultry but we have to make our own choice over this. I eat wild Pacific salmon which I usually buy frozen. I do not eat farmed fish.
In addition, I eat nuts, seeds, beans and pulses. The nuts and seeds that I eat are raw. I grind up the seeds and eat them with plain soy yoghurt with live cultures for a healthy gut. I drink unsweetened Alpro Almond milk, enriched with calcium. I avoid all dairy products because of antibiotics and growth hormones. I also avoid sugar, most canned food and processed food.
I hope this helps. The sensible thing is to eat a variety of different foods, and not to become obsessed with nutrition. You have to enjoy your food.
During chemotherapy I was told not to eat any raw foods or seafood because of the risk of infection, so I followed that instruction. After you have finished your chemotherapy it is very important to eat plenty of raw food, such as lovely salads.
I hope this helps.
Fond thoughts.
Sylvia xxxx
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HI, Lou 2016,
Welcome to the thread, and I'm glad you are managing treatment well so far.
I am very sorry to hear about your baby, how hard that must be.
Singapore must be an exciting place to live, I have only seen it on TV!
Talk to you again, Mary
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Hello everyone,
I do hope that those of you that have finished treatment are out doing things you enjoy and putting cancer behind you.
Rhonda, what is happening with you now? It will be so nice when you can say you have finished treatment and can join Gina, Kath and Pam in putting all this treatment behind you. It is so important to get on with a normal life.
Marias, how did your last chemotherapy go?
To my fellow Brits, I am disappointed that I have not heard from you in a while, Chris, Maggie, Amanda and Lamis. Remember that way back on September 12th 2010 that I started this thread for you to bring TNBC out of the dark ages in the UK.
Val and 4everStrong, how is life treating you?
There has been a lot of talk about Lent on the thread lately. I am not at all religious, but I thought Lent was all about fasting and you can do that any time. It was brought in way back when and was about food supplies running short and so there was less food available.
I think it is a bit much when on the news we are being told that Theresa May, our Prime Minister, is giving up salt and vinegar crisps for Lent! How trite can we get?!
I am so looking forward to Spring.
Best wishes.
Sylvia xxxx
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Hi Sylvia/ all
Just popped on to check how everyone is keeping , hope everyone is well.
I'm not too bad at the moment . On my last check up I was sent for an X-ray on my back and hip as I was having a bit of pain. This was about a month ago and have still not heard anything. I have rang the hospital twice and still no results! In the mean time the pain seems to have subsided. I will continue to pester until I am given an answer. Does anyone else have this problem with getting results through?
With regards to religion I started to go to church about two years ago just after my diagnosis. This has given me a lot of peace and i really do enjoy it. As for lent I have not given anything up but think that salt and vinegar crisps would be a good one for me as this is my weakness lol.
Lou I will be visiting Singapore In May with my daughter . We are staying in Clark Quay for 10 days then a stop off on the palm in Dubai on the way back. I am really looking forward to it to celebrate both our birthdays. My daughter doesn't know yet where we are going it will be a surprise.I wonder have you ever been to this place and is it nice? I do hope so .
Anyway I wish you all a great weekend.
Lots of love
Amanda
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Hello Sylvia and all,Finished my last chemo and had the first infusion of Herceptin and Perjeta.I slept through most of the long
Infusion. They think the sore spot of the fine needle biopsy is scar tissue.If it gets worse they will do an ultrssound.Feeling good that I am done with chemo!
Waiting for a quick surgery date-I will hound them starting on Monday.checking out coyote scat with the grandkids
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Hi Lou and Nili,
I hope you will find this thread helpful in getting more info about how to fight cancer. We are here to try to help you but we don't claim to be experts on these matters. We can only share our experiences and what we believe in but the final decisions about these things will always be yours.
As you can see, we all agree that nutrition is very important in fighting cancer. It is a common belief that we should stay away or limit our intake of sugar, dairies, red meat, and processed foods.
I've read many things and there are many controversial claims about certain foods. There are still lots of food items that we should be careful of and then there are those whose benefits and side effects are still debatable like soy products and flaxseed. Even fruits like apple are not spared from controversies like it having cyanide content. Garlic coming from China are said to be grown in toxic places and are being bleached to make them look whiter. Things like these.
I can only suggest to keep on educating yourselves thru lots of reading and consultation from experts. Funny thing is even experts from orthodox, naturopathologic and alternative medicine disagree on many things. So like I said, the final choice is yours.
I will leave you with a video link on some popular foods which I believe would help prevent/fight cancer just as your simple guides and maybe you can do your own research.
Regards,
Gina
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This is my own version of a Detox Smoothie.
Simple High Alkaline and Antioxidant Smoothie
1 cup fresh Moringa leaves
2 cups watermelon, unseeded
1 cup cucumber
1 small stalk of celery
1 tbsp parsley (wansuy)
8 oz distilled water
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Clean and combine all ingredients in a blender and blend.
Drink immediately preferably on an empty stomach before meals.
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Hi Rhonda,
I missed your last post as i was doing mine. Congrats on finishing your chemo. I hope your scar tissue remains to be just that and nothing serious.
Ok enjoy your chemo freedom with your grandchildren.
Regards,
Gina
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Hi Gina,
Thank you for your well wishes.I noticed they have organic Moringa
Powder on Amazon for sale.Is this worthwhile?I watched your video and we eat all of those foods!Hope things are going well with you!
Rhonda
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Rhonda,
I have never tried Moringa powder because we have lots of the fresh leaves here. I think buying the organicpowder form is ok as an alternative as it may be more concentrated but it would be more expensive. A bunch of Moringa leaves which is about 1 full cup here is only 5 pesos or just 1 US cent.
Moringa leaves could also be dried fora few days to be boiled later as tea. No waste. Guyabano fruit or the soursop is also believed to be a potent cancer fighter and it cost around 2 dollars per kilo now. Avocado use to be plentiful and in season, only cost 4 cents per kilo before but now, it is so scarce and the price skyrocketed to a ridiculous 4 dollars per kilo. Maybe it is now so much in demand abroad and being exported. The same with the highly alkaline watermelon, cantaloupe and other tropical fruits. Young and matured coconuts used to be about 2 cents per piece but now, it tripled. Veggies like broccoli, cauliflower, carrots and bell peppers are also very expensive.
The only local anti-cancer foods i know that did not increase so much in prices are vegetables like cabbage, moringa, jute, malabar spinach, lady fingers, tomato, squash, sweet potato tops, chili leaves, green papaya, ginger, onion, turmeric and garlic although most garlics here now comes from China and has a bad reputation. I try to buy those that i know has been grown organic or at least homegrown that may not have been sprayed with pesticides.
The reason i am mentioning all of these is for all of us to try and find alternative foods which have the same nutritional values, cheaper and more abundant. If i only have a farm or a bigger space like Mary, i would have experimented on growing all of these beneficial fruits and veggies. I would have raised organic livestocks tooif i can.
Going back to Moringa, it is a tropical treeplant but it can be grown indoors if the weather is too cold. It easily grows here, just prune a branch about 2 inches thick, put it in a small plastic soil bag, put just enough water everyday until strong roots come out before transferring it to the ground or a deep plant box or pot with small wheels so you can easily move it around on cold weather. The Internet has many instructional websites on how to grow and mass produce them. We used to have 3 tall Moringa trees at my parents' house but all of them died when a big storm flooded us and lakewater stayed for about a month. My brother is now trying to grow one, after we realized its value. Things you take for granted and learn the hard way. Lol!!!
Stay strong and relax more,
Gina
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Hi Sylvia,
I was thinking about Lent, and since we have been talking about mindfulness, it seems to me that it is a time of mindfulness, in that it makes one aware of some things that perhaps one does without thinking on a daily basis. You are right, one could fast or be mindful of bad habits at any time, but we are humans who speed through our days and often aren't doing things thoughtfully. I know people who have given up drinking, eating sweets, smoking, swearing etc. for the Lenten days. I know people who have made or purchased 40 greeting cards and are sending one out each day to someone to tell them they are appreciated. Adagio is doing acts of kindness. I guess it would be a better world if we all did these things all the time, but Lent seems to be a good time to think about taking stock and trying to do better.
I hope you have a great weekend, spring is not far off! Our weather is already spring-like in the daytime, the nights are still cold, but slowly changing.
Talk to you again soon, love, Mary
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Hi, Rhonda,
I am happy for you that you have now finished your chemo, how nice that you could sleep through it.
The pic of your grandkids is adorable, I see three little ones, how many grands do you have?
Have a great weekend, Monday is soon enough to start the fight again! I hope you can get a surgery date soon.
Love, Mary
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Hi Mary,
I am totally with you on your thoughts about Lent, introspection and doing good. When i came to BCO, i was so angry and confused with my bc but the people here were so friendly and supportive that i was sort of pacified and became sane again.
I am grateful to Sylvia because as i can recall, she was the first one who spoke to me here and unselfishly gave her support. I think ChiSandy was the other one on another thread because I was interested in natural anti-cancer food and supplements. Sylvia even followed and posted a couple of times on the temporary thread that I made about the food which i believed to be anti-cancer as i was trying to gather more info and educating myself about my cancer status including my hormonal assay.
So my quick impression about BCO was it is an excellent forum and support group for cancer patients. It sure helps a lot of people. It is a place for great timely info, amusement (for the pics, jokes and videos), venting and expressing your ideas freely.
With a dreadful disease such as ours, IMHO, we cannot afford to be angry at everything around us. We do not know for how long we will be alive. It pays to try to be positive and happy. Being grumpy and blaming everything for our misfortune is not an option and so, for me, Lent, Easter, Thanksgiving, Christmas, Valentine etc. are very important celebrations because they all have symbolic meanings. Of course we should try to be good everyday but these holidays are extra-special.
It is always good to read your thoughts.
Yes, do try to refrain from cussing, like you mentioned or try to at least change the bad words to something funny and positive. Lol, that's another good way to do it!
Keep in touch Mama Mary! Kidding!!!
Love,
Gina
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Hi, Gina,
Thanks for posting the video about good foods, I am happy to say I eat all those things too. There are quite a few I would add to that list, but that's okay, guess I can make my own list! You say that broccoli etc. is very expensive now in Philippines, but from reading your posts I gather that you have many native foods that we cannot readily grow here, that are very beneficial. You probably don't need the broccoli with all the other choices that you have.
My husband and I bought our farm 22 years ago, we always had a big garden until his worsening health slowed us down. We would plant potatoes, both red and white, okra, broccoli, cauliflower, lettuce, spinach, radishes, sweet and hot peppers, tomatoes, squash, melons, tomatoes, cucumbers, onions, beans and corn. I would plant basil, oregano, and tarragon. When he could no longer do much in the garden I shrunk its' size and the number of plants I would grow. Until my cancer diagnosis and the summer of chemo in 2014 and my shoulder injury, since then no garden. However, my brother grows all these things and more in his garden, so I still have access to home-grown veggies with nothing nasty sprayed on them and I also plant a few things in pots. And I still have a large asparagus bed. I must add that the things my husband and I would plant had varying degrees of success, our area has poor soil that has to be amended, we would try to do things organically which sometimes worked and sometimes we lost the battle to the bugs and the weeds. It was nothing like they show on TV where people have their perfect little 12 ft. sq. garden with black soil and not a weed in sight. It was usually a battle, but I enjoyed it. I would love to still be doing it, but don't have a willing helper and couldn't do it alone. I have toyed with the idea of having a small raised bed, would have to haul in some good dirt and start fighting with the animals again!
Do coconuts not grow where you are? Our melon season is June/July through September, they are very expensive here now too, and probably don't taste very good. I learned that watermelon is one of the most alkaline foods, so I try to eat a lot of it when I can get it in season. Do you eat the dark chocolate much?
Gina, Have a very good weekend, talk to you soon, love, Mary
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HI, all,
Since we are talking about foods, a little more on the Rainbow......
https://thetruthaboutcancer.com/rainbow-diet-cance...
https://thetruthaboutcancer.com/healthy-herbs-spic...
Hardly enough time in the day to eat all this stuff, haha!
Have a great weekend, Mary
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Hey Mary,
I didn't know you were still posting when I saw your latest post to Sylvia. So you did make good use of your farm. That's good and i'm envious. I guess that dream of mine will stay just a dream. Lol! Unless you donate to me your farm. Kidding!
Come to think of it, i just had this wild idea of us TN ladies, all staying and living in your farm, happily farming and harvesting our produce together and telling jokes and everything. Like some sort of a monastery for female cancer patients. I wouldn't want to call it a Home for Aged, for sure. Lol! That would be fun! I love veggies!
Ok, thanks for your nice post. But before i go, i forgot to tell you about a funny thing about swearing. My Aruban uncle-in-law, the one i told you about a few posts back, he used to have a funny exaggerated expression which always made us laugh. He always exclaims this words in a very loud voice, Abrenuncio Satanas! We didnt know what it means but he did it in such a funny way with his body shaking. Up to now, I still didn't know what it means and when i Googled it awhile ago, I found out it means "I renounce thee Satan!". Then just now, it dawned on me that everytime he does that, there were pretty young girls passing by and so, it was not swearing he was doing but a naughty way of making catcalls. Lol! Now i know he's a creep! Gosh, all these years since 2010. I hope he gets nailed to the cross on Good Friday! Lol!
Talk to you again soon.
Gina
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PS
Mary,
About the coconuts, i am now living in a condominium so no plants anymore but in our former house, we used to have two prolific coconut trees. One bears young sweet and tender fruits while the other one produces thick matured ones. I miss them, we used to drink lots of the fresh cocowater. And about the dark chocolate, we dont have the cocoa trees and i've never seen one. I do like eating dark chocolates but not the pure bitter ones. That's it for my edits.
Thanks for the links, I shall look at them later. It's almost 11pm here, time to sleep for me. Have a great day!
Gina
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Hi Mary and all,
We have 7 grandchildren and they make me so happy!
I am exhausted after a visit but it is a good tiredness.Funny story-I have been cautious about covering my head when the two year olds are around and the other day I forgot.I didn't realize until I went in the bathroom and looked in the mirror.No reaction from my grandson Parker-I couldn't stop laughing.Big relief! I do have some fuzzy white and black hair so I am not completely bald but he didn't say anything.
We live on a large property that my father in law bought in 1955.It was a huge resort that has mountain views of
The site where the famous CAtskill Mountain House was.
My father in law ran a bungalow colony and people would come from the City and stay the whole summer.Now
My husband and his sister and brother have houses here. We are fortunate to have chickens and fresh eggs
That are healthy since they free range all day. Thank you for reminding us to be mindful-it is true that we
Get caught up in life and forget to show people they are appreciated and just do nice things.I like the card idea-I am going To try that. It is really cold today so no walking for me.Hope everyone has a nice weekend!
Love,
Rhond
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Hi Sylvia,
Yes, I keep myself hydrated. I carry with me a bottle of water everywhere I go even at home. I also drink after every bathroom trip even at night. It helped me a lot when I had AC because with AC it wiped out a lot of fluid. I would loose 2 kg every infusion but I was able to regain it before my next infusion. My weight have been stable so far. I am mostly 43 kg and I am very petite at 154 inches.
It will be selfish for us to keep her knowing that she might go through a lot and with my current condition I don't want to burden my DH with a lot. Currently he is our sole breadwinner. I stopped working after I gave birth to my son to take care of him full-time until now. I intend to go back to work when all this is settled to keep myself from thinking too much. Life must go on.
I have read about the rainbow diet and I am currently incorporating that in my diet now. I haven't decided yet for now on the no meat and no dairy diet because currently I need it while undergoing chemo. I must say though, that when I found out about my diagnosis, I went meatless and after my mastectomy I healed within a week. I am not sure if it helps but I felt healthier. My BS also said that even though we waited a month before I went for the operation my lump didn't grow a bit. We waited for the baby to be 16 weeks before we proceed with the operation. She is one tough cookie and I miss her every single day.
Thanks for all the info on nutrition. I will continue to do my research on this and decide what will be most beneficial for me.
Best regards,
Lou
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HI, Mary,
Thank you for welcoming me in this group.
Losing my baby is the hardest part in this BC journey. If I have been healthy, I will fight to keep her.
Singapore indeed is a very exciting place to live. I love staying here.
Best regards,
Lou
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Hi Amanda,
Yes, Clarke Quay is a very nice place. It is one of the night spots here. It is also a stones throw away from Chinatown. It is very near to the city and a good location to stay for tourists.
Singapore in general is a very nice place. It is very small with a very efficient public transport. You can find your way around easily. You don't even need Taxi to ferry you around. Taxi's is very expensive here.
I am finishing my chemo in May and if I am feeling better we can probably meet up.
Keep me posted.
Best regards,
Lou
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Hi Gina,
Thanks for the video link. You are one of the reasons why I joined this thread. Finding another Pinay under this odd circumstances make this journey a bit lighter. I have someone I can ask for advice and compare notes with which is very close to home and to what I am familiar with.
How have you been feeling after your PFC? Any hair regrowth? :-)
My hair started to grow after AC and I am not sure if it is still going to shed. It is about an inch long. My lashes have been shedding and growing. I still have brows but very thin.
Best regards,
Lou
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Hello Amanda,
Thank you for your post. I do need fellow Brits on this thread as I did start it for them.
As far as your X-ray is concerned, keep pestering for the results. The NHS is not performing well these days. On the news recently it was all about loads of letters and results being dumped and forgotten about. They were important letters that did not get to GPs or patients.
I was glad to know you have something to look forward to in May with a holiday in Singapore.
Fond thoughts.
Sylvia xxxx
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Hello Rhonda,
Congratulations on finishing chemotherapy.
I hope you can get your surgery done without too much delay. Keep us informed.
Fond thoughts.
Sylvia xxxx
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Hi Lou,
I am thrilled to have a fellow Pinay on this thread. You are most welcome here. Feel free to ask anything and I would gladly try my best to answer them. I think you already know a lot about your condition and how to manage SEs since you said you have been lurking since September last year. From the manner you speak, I can say that you are an intelligent lady who knows how to take care of herself. I look forward to sharing ideas and experiences with a fellow kababayan.
There was another Pinay I met here from a differen thread, Majo was her name and she's doing her treatment from another hospital at about the same time as I was alhough her regimen was ACT. We exchanged a few posts and PMs but then, she just went silent. Maybe she is having a hard time with her chemo. I havent heard from her since last year.
About my hair regrowth, i dont feel or see any improvement yet as it is just a couple of weeks since my final Docetaxel (Taxotere) infusion. I think i lost about 90% of my hair and my hubby cut the remaining hair as short as he can to about 1 cm. I didnt want to use a razor on my head as it might irritate my scalp. My eyelashes and skin hair have shed. Eyebrows thinned a bit too. My nails remained intact but went a little dark. My left IV hand skin got burned from Docetaxel from the 1st infusion and the last (3rd) although not as bad as the first one. I asked the Onco nurse for an explanation and she said it really happens to some patients sometimes and is not due to any error in the IV insertion. Anyway, my hand skin is starting to heal and slowly getting back its color.
Kababayan, this is all for now. Talk to you again soon. Chillax! Lol!
Gina
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Hi Sylvia,
Thank you very much for Kind message. I come from india but stayed in the UK for enough long now.
I would like to find out about iscador. I live in sheffield would need to find out about homeopathic doctor.
Mindfulness course was excellent. My tutor talks about living in present. It is same as meditation. I found I can sleep better.
I only juice kale pineapple and cucumber. I just can't eat kale however this way I can at least have some vitamins.
Does anyone of you take vit b6? Apparently it was in the news regarding breast cancer. I have not managed to find much about it yet.
Take good care of yourself
Love nili
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Hi Mary,
It is much better since I do not have headache.
I try not to think about diagnosis day as all memories comes back. It was very hard to digest about the disease when you are alone.
I was watching a programme here in the UK called trust me I am a doctor. They talk about turmeric. Apparently it gets absorbed better when it is eaten with food. Basically fat helps it absorbed better. Being given an Indian we eat turmeric on daily basis. I hope it helps.
Yoga is going great. I tried pilates but could not enjoy it. I also do all these stretches in body and mind.
I am really sorry neuropathy is not helping. I am sure over the time it will go.
Lots of love
Nili
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Hi Gina,
All that I learned and learning is through this thread. It is helping me a lot and knowing that I am not alone in this. It gives me idea also what I can try for myself and take it from there.
Hopefully, Majo is not posting because she is doing well. I also met a fellow Pinay here and she just started with chemo last January. I haven't seen here again.
So sorry to hear about your burnt arms and glad that it is healing now. I initially joined a cold cap trial study here but my hair didn't hold up. It started to shed before my #2 AC infusion. I then decided to shave it all off. It felt so much better than holding on to it. After I finished AC it started growing and I shave it again because it was growing not evenly.
I kept myself busy with the Little One. I also do crochet and make costume accessories to pass the time and to rock my look when I go for infusion. Here are samples of my handy work. :-)
Trying to be as "chillax" as I can be. LOL
Best regards,
Lou
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Hi Lou,
Thanks for your wonderful post. You are definitely right, BCO is a big help. We are not alone.
Your accessories looked Wow! Where did you learn to do those? I wish i could have a hobby too but i am too busy with my job before and now my hyper kid. I am also preparing to accept another temporary job and still estimating if i can do it homebased. I like accessories but I am a bit allergic to metals and my ears get itchy and sometimes swollen from them. I used to do a little bit of cross-stiching before but that was several years ago and I can't remember where i kept my stuff. Maybe i'll just research a bit about how to do the Mindfullness thing that Mary mentioned to de-stress a bit and i will start to do some light stretching exercises to tone my muscles. After a month from chemo, I plan do jog a little under the morning sun to get a little bit of natural Vitamin D, For about 2 months now, I am taking Caltrate tablet once a day for calcium with Vit D added as per my MO's prescription upon my hubby's suggestion. My hubby does all the research for me in as far as my meds are concerned. He says that i also need to detoxify using natural herbs and veggies to try and cleanse my liver and kidney. You know, he's like the Mang Kepweng type, the popular Pinoy cartoon quack doctor. Lol!!!
Regards
Gina
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Hi Lou
I would love to meet up in Singapore if you are feeling well.
I will be there for 10 nights from 8th May before going to Dubai. A bit nearer to the time I will PM you with my mobile number etc and we could maybe meet for lunch or something. There is just myself and daughter Chantel going so a nice girly hol.
Hope everyone else is doing ok.at least we have a bit of sunshine in the UK today. Maybe Spring is on it's way .
Love
Amanda
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