Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Marias,
thank you for posting the photographs of nature in action. They are most appreciated.
Thank you for the link in Spanish. I have printed it off and shall read it hopefully today.
Keep in close touch and let us know how you are getting on.
Fond thoughts.
Sylvia xxxx
0 -
Hello adagio,
I hope all is well with you. I woke up this morning to the news that there has been a terrorist attack in Quebec City and that there are dead and injured people after a shooting in a mosque. I spent the first three years of my stay in Canada in Montreal and I have fond memories of visits to Quebec City. The world is in such turmoil.
Are you reading the emails from Chris Woollams/Canceractive? I do like to know who is following any of the information from these that I post. I have just thought that it is time for another edition of What Doctors Don't Tell You (WDDTY). I need to go into town to buy some more sauerkraut, so I shall pick it up then.
Sending best wishes to you and yours.
Fond thoughts.
Sylvia xxxx
0 -
Hello Kath,
I just wanted to let you know that my thoughts are with you as you make that long six hour drive to Adelaide today January 30th to begin your radiotherapy treatment. Try to make the best of the journey and it will be lovely if you can take some photographs. They are interesting to me since I have never been to Australia, but from photographs I have seen it is a beautiful country and so large compared to this island in the sea that is the UK.
I do hope all will go well with your radiotherapy treatment and that you will get to know some of the people that are going through treatment.
Please keep us informed as much as you can. The thread is a constant learning experience for all of us.
I was sorry to read that you have so much pain and with your osteoarthritis, it must be difficult to know which pain is coming from that and which from the chemotherapy treatment. When you have finished the radiotherapy it might be a good idea to have a complete health check up to compare how you were before all this and how you are after it all. If that were me I would be getting a bone density scan to see whether the chemotherapy and radiotherapy has affected the bones and caused osteopenia or osteoporosis.
Be strong and be positive.
Fond thoughts.
Sylvia xxxx
0 -
Hello Marias,
Thank you for your kind words and I am glad that you are staying with the thread and I am glad that you have found a connection with Pam and her husband. I must find time today to put up a map of Colombia. I have done this in the past for other posters and their countries, but I think it might be time to do them again.
Many years ago when I was at university I became good friends with a student from Colombia. He was doing a Masters degree on the famous English author Virginia Woolf and I was doing a BA hons in French. My subsidiary subjects were Spanish and Sociology. In those far off days we used to talk a bit in Spanish. He came from Bogotá. This just shows you how we can connect. One of my best friends in Canada was an Egyptian woman and we used to have really interesting conversations. Her three young daughters used to love being with me.
I was interested to know that you are reading a book about anti-cancer recipes. Please tell us what you learn from this book. Remember, also, Chris Woollams book about the Rainbow Diet, which is really the Mediterranean Diet. I do know about the Gerson therapy but please enlighten me on the Okinawa Diet.
We are all interested on the thread in healthy eating and living. For nearly twelve years I have been drinking green tea and bitter apricot kernels as part of an anti-cancer diet.
Wishing you all the best and sending fond thoughts.
Sylvia xxxx
0 -
Hello Pam (lilyp6),
I have just read your interesting post and I know that you will be sleeping at the moment over there in California, so I am going to take a break and have some lunch here in the UK, and then I shall answer later on. At least this morning I have managed to get up to date.
Talk to you later.
Best wishes.
Sylvia xxxx
0 -
Hello Pam,
Thank you for your post. I think if that were me I would be asking for some physiotherapy to help with the post-surgery of both breasts. A physiotherapist will know exactly what to do and give you instructions on what to do between appointments. I think it is important to get it right from the beginning. After my mastectomy I had a bit of swelling and puffiness in the right hand, and just to be cautious, I asked for an appointment at the lymphoedema clinic at the hospital. I went twice and was told the little bit of swelling did not merit further visits. The specialist measured around the top of the arm and said it was below what was classified as lymphoedema. She gave me gentle stretching exercises to do but I had been doing these exercises straight after surgery as advised. She did give me a referral to the physiotherapy department at my local hospital. I went there for a few visits and was also given exercises to do. Some of these I found a bit harsh, but I did what I could.
I think, with gentle exercise and time, everything falls into place.
We all have to make individual choices about wigs. I think I wore mine for about fifteen months and then I just decided to go out without it.
As for weight I kept my weight stable throughout.
I think aloe vera gel is ideal for use during radiotherapy. I certainly used it and had no problems. Have you been given any other specific instructions during your radiotherapy? It is important to know what individual patients are being told so that the thread is always a learning curve and has intellectual depth.
Let us know if we can help you in any way.
Fond thoughts.
Sylvia xxxx
0 -
Hello Gina,
Thank you for your posts. When will you finish your docetaxel (Taxotere) treatment? Please keep us up-to-date.
Fond thoughts.
Sylvia xxxx
0 -
Hello everyone,
As promised, I am posting a map of Colombia so that we know where Marias is. I am also reposting a map of Australia so that we know where Kath is going. Kath is going from her home in Broken Hill to Adelaide.
I am wondering what has happened to my fellow Brits – Chris, Jackpot (Gill), Michael, Tom, PeterandLiz, and of course Maggie. Greetings to all of you.
Best wishes.
Sylvia xxxx
0 -
HI, Gina,
I got to watch a little of Miss Universe, I saw the first 13 picks, all so beautiful of course. I did notice that they all seem to be so very thin, no extra padding at all! Then I had my TV set up to record it, because I had to quit watching for a bit, but since my recorder is set to record 2 other shows I try to catch on Sunday, it didn't record all of it.
So, I did get to see some of the ending, the last picks, and I saw that Miss France was crowned. Miss Haiti was very beautiful too, I was glad to see that. It seems everything we hear of Haiti these days is doom and gloom, but it can't be all that way if it's producing young women like that! I noticed Miss Phillippines won last year, she was gorgeous too. Miss USA did very well for herself, just didn't make it all the way.I like to play Trivia sometimes at night, last week I learned that there are 7000+ islands in the archepelago of Phillippines, I had no idea there were so many. I imagine some of them are very small.
I'm glad you read some of the CancerActive posts, there is so much info there, I understand if you don't make it through all of it. I do not like the new format with the smaller print, it is hard for me sometimes, hopefully they will fix that.
The food we eat is so important. I admire Sylvia's disciplined diet, which seems to have served her very well. I do quite well when at home, but when I go out it is difficult to stick to it, so I try to be quite strict while at home, and then not worry too much when out and about.
I agree that Stress is an important factor for some of us in the development of cancer, I have no scientific proof of my own to prove this, it just makes sense to me. My father had 10 brothers and sisters, one sister had breast cancer, there was no other cancer in the family. None on my mother's side, she was one of 4 children. I was 61 when diagnosed with TNBC, older than normal, and Caucasian, which is also on the low side of normal. I was not overweight and was very active, I loved to walk! I was under a great deal of stress when diagnosed, and had been for roughly 5+ years because of my husband's worsening illness. I read something in a book on cancer that said to go back 8 to 10 years and see what was happening in your life. Was there a high-stress situation? I could go back 6 years before diagnosis, when my dear brother struggled with a very mysterious illness that puzzled the doctors and kept him hospitalized for a month until he died after being ill for 2 months. The diagnosis came very late, and the only consolation was that this disease is always fatal, there is nothing we could have done anyway. That disease is called Creutzfeldt-Jakob Disease, a brain disease that quickly eats holes in the brain. fortunately it is very rare. My brother had never married, so myself and other brother took charge for his 2 months of severe illness, he would stay with us, and there was lots of driving to the doctors and hospital and then home to my husband who needed me too. The day after my brother's funeral my husband had to be hospitalized because of his lung disease for the first time. So I suppose the stress never ended. Sorry to go on so long, I said all that to say this, I absolutely believe that Stress can be a factor. I tried to take care of everyone, and I thought I was healthy, but I was absolutely running myself down physically and mentally. When I look back, I probably could not have done much differently, maybe tried for more support for myself. I thought I was invincible and could do it all, TNBC has taught me a harsh lesson.
That's just my opinion as to cause; it could be what my BC surgeon said, you have BC because you are a female. I am not a doctor, although my husband did call me "Doctor Mary"!!
Better go, I have been long-winded again,
Talk to you soon, dear Gina! Mary
0 -
Sylvia,
Thanks so much for the maps, I love to know where people are in the world! So Kath driving to Adelaide is about the same as me driving to Oklahoma City, Oklahoma. I can visualize that, and would not like to have to do that as often as she will probably have to for radiation.
Talk to you again soon, I am trying to get through all the posts, you are so wonderful for keeping it all straight!! You are amazing!
Love, Mary
0 -
Hello Mary,
Thank you for your post. I am so glad to know that you like maps and to know where people are in the world. I am like that as well. Today I have been looking up all about Colombia and their history. It is sad that it is all about conquests again. Marias is in Cartagena so you can have a look at that. I think I am going to put up the maps of the USA and Canada again, as I like to think of you and adagio across the ocean.
I was interested in what you said about stress and thinking back eight to ten years prior to a diagnosis of breast cancer. I was diagnosed in 2005 at a time when I was thinking of my older brother who died in October 1995 and I was heartbroken at his death at age 56, so soon after retiring from teaching. I was thinking we should do something on that ten year anniversary to remember him. Instead in June of 2005, I was dealing with my own diagnosis, of breast cancer and so there was no celebration of my brother, Ken's, death. I am convinced that stress played a great part in my own diagnosis. In fact, for a very rational thinker, I have got a bit spooked by years ending in 5 in my own life.
Thank you for your kind words again. I do hope people on the thread will look at the information about the four pillars of cancer. There is a lot of information, but just remembering the four is sufficient to help you on the right track. Avoiding a poor diet should be quite simple, avoiding environmental toxins is a challenge, infections seem to me difficult, and stress, avoiding it is easier said than done.
The weather here is miserable, damp, dull and rain. The news seems to be obsessed with Donald Trump and Brexit. I could not believe that a terrorist attack in Canada is taking second place to Donald Trump and Brexit here in the UK. What did you think of Theresa May? I think she is trying to do the right thing with Brexit and the USA. I do wish our government would give greater priority to the fact that one in five children in the UK is living in poverty, not to mention the problems in the NHS and the care of the elderly.
Keep well Mary.
Love.
Sylvia xxxx
0 -
0 -
Sylvia and others with inflammation issues. I was given a sample of frankincense and mirhh oil. What a joy. It has helped a lot as well.
0 -
Hi, Valstim,
I'm so glad you have found some knee relief with the cortisone shots, immobility is not good!
Thanks for saying you think of me as an anchor along with Sylvia, and you miss me when I'm gone. I treasure the friendships I have made here, I don't keep up as well as Sylvia does, but I try. I am in and out of the house quite a bit, plus I find myself, when I am here, to be easily distracted. Sometimes I leave the computer in the middle of a post, and I might not finish it until an hour later. Right now I have all the burners and pans out of the stove, because I started cleaning that much earlier! I think I need to start some serious meditation, too many things running around in my brain! Can I blame that on chemo too? LOL
Will talk to you again later, Val!
Mary
0 -
Mary - I am a bit like you in that I sometimes start a job and get quite distracted to the point of not getting back to the original job until several days later LOL Cleaning the stove can be a very satisfying job and one that cannot be left unfinished for several days, however.
We are going to Zihuatenajo in Mexico on February 2nd for one week - it is basically a week of rest, reading,enjoying the warmth of sunshine and the cooling of the ocean. I look on it as recovery from our long trek in Australia and New Zealand. I just cannot seem to rest much at home because there is always something to do or some place to go. I think you will understand what I mean.
Just read your post about your brother's illness and then your husbands so close on top of that - I really cannot comprehend how stressful that must have been for you - you certainly should aim at looking after yourself first now after going through so much. It can take a long time to recover from those life sapping situations. Thanks for sharing with us. Have a wonderful day
0 -
Hi Sylvia,
I just got my bloodtest results today and it's a go for tomorrow's chemo for me. Almost all of my SEs have subsided except for the body itchiness again. I took Claritin last night for it w/o doctor's order and i think it helped a bit. Today i am taking my pre-chemo meds in preparation for tomorrow. My last chemo is at the end of Feb, if there will be no problem with my blood or my iv hand.
Almost done. Thank you for all the support. There's so many things that i need to do after chemo but I also intend to continue posting here. Please pray my complete healing as i am praying for all of you, especially those who are still in active treatment and those who have finished and waiting to be declared NED or cancer-free.
By God's grace, we will all be healed.
Gina
0 -
Hi Mary,
It is always nice to hear from you. Thanks for having the interest in watching this year's Miss Universe. It means so much to our people having hosted the last about 23 years ago.
This year's pageant was the most successfully organized as commented by the Miss U head organizer. It had all the fun and festive moods, both in the pre-pageant days and coronation, including the funny Steve Harvey as host.
I still enjoy watching this event because it makes me appreciate more about the beauties of nature around us and the girls each have their respective advocacies and tries to be role models for the young. Some, like Miss Haiti and Miss Kenya have their own life experiences and difficulties to tell and how they overcame them. Still so many beautiful things to appreciate in life after adversities.
Miss France deserves to win, with her beauty, poise and intelligence. She spoke in French when asked questions and this showed her confidence with no inferiority complex. She was my choice going into the remaining six finalists.
I appreciate your having interest in trivias about the Philippines. I remember a certain Filipina candidate back in the 90's who was asked that question about the number of islands we have. She was a former beauty queen Charlene Gonzales who admitted that she was initially stumped during the question-and-answer portion of the Miss Universe pageant when she was asked about how many islands there are in the Philippines.
She countered the question and asked the host "High tide or low tide?" before eventually saying that the country has 7,107 islands during low tide, and 7,108 during high tide! She was also one of the top ten finalists in that Miss U pageant.
Now, according to the latest geographical map survey, we have about 7,641 islands including those disputed Spratly islands with China, Taiwan and some Southeast Asian countries.
The link you gave about Stress is interesting and helpful and i thank you, Sylvia and adagio for sharing them.
Some studies said there is no direct link between stress and cancer. I really like to believe that but there are so many people who claims that there is. Like you with your DH and bro, I've also been under a lot of stress from my job and at home before my dx. In my case however, there were just too many factors involved like family history, age, post-menstruation, fertility drugs, cigarette-smoking bosses, etc. The carcinogen culprits may also be from eating fresh and live tilapia fish and shrimps, plus ordinary beef, chickens and eggs which we know are fed chemicals and antibiotics.
There are however, many cancer cases which just suddenly came out of the blue, affecting health-conscious and stress-free people.
So now that I have some info on these things, i just try to choose what i think are best for me like stress-relief thru meditation and gentle exercises and organic foods and health supplements.
Ok this all for now, I gotta do an errand.
Later dear,
Gina
0 -
hi Gina and everyone
Glad ur doing well! Second radio today and it is very confronting but much better than chemo. Anxiety attack yesterday after chemo because I thought u could feel a lump in my affected breast after my first dose of radio when I rubbed cream on it. Then logical brain took over and I said that they had just done another mapping scan where they would have seen it on the same day. God I hate this feeling surely it must settle with time! Very sad and lonely today! It's tough being so far from home and loved one
0 -
Kath - it must be difficult doing radiation so far from home without your loving support around you. It is hard enough even with being in our own familiar surroundings and our loved ones closeby. I remember for the longest time thinking that I had another lump on my cancer side - and it was a lump but it was scar tissue underneath the incision from the lumpectomy. I stopped feeling it because it worried me so much - that lumpiness has gone now. The stress of recurrence is huge in most of our minds, but one way or another we each have to find our own way of dealing with these dark and onerous thoughts. Will you get to go home on the weekends, or will you stay in Adelaide the whole time? Do you get your accomodation provided or how does that work? I was fortunate enough to be able to drive myself every day for my radiation.
I actually quite enjoyed Adelaide when I visited it in October - there are some very attractive buildings with wonderful architecture. I enjoyed the art gallery, and it is free on some days - it would be great if you could go visit it. I remember walking along the by the Torrens River past the convention centre and the victoria rotunda all the way along to St Peter's Cathedral - it was a lovely walk with lots of swans on the river and boats taking people for rides down the river. It was in Adelaide that we went to see the ballet "Nijinsky" performed by the Australian Ballet company. Nijinsky was a Russian ballet dancer who had quite a tumultuous life and the American choregraper John Neumeier (Director of the Hamburg Ballet company) created the ballet around Nijinsky's life story in 2000, I believe - it is a powerful story. The ballet has only been performed by 3 ballet companies in the world 1) Hamburg Ballet 2) Canadian Ballet and 3) Australian Ballet - so it was quite a coup for Australia to get the opportunity to perform, and luckily for us, we got to watch and listen while in Adelaide.
Sorry to be so long winded about the ballet, but it did leave a lasting impression on me and I will always remember Adelaide for that. Wishing you well as you undergo your remaining treatments - take great care of yourself. Use lots of cream and rest when you need to.
0 -
Hi Kath,
I understand all your fears. I think most cancer patient do. When I was diagnosed with it, I said to myself that i wouldn't worry too much and that i would try to entertain myself to forget about the worries. Most of the time, i do forget about it but when i become alone, the fear creeps back in. This is why family support is so important. I couldn't imagine myself being alone with this problem. The same reason i worry for Mary because she lives alone. Gosh, you ladies are strong! If i were in your shoes, i will break down. I think adagio is trying to tell you that you should have some sort of a diversion while in Adelaide, to keep your mind off your problems. That's a good thing. If i were with you, we'll be flirting around on a singles' bar and hook up with some cute rich guys. Lol! I told the same thing to Mary.
Don't lose focus on your goals and why we are all doing these things. We will survive! There are others who were in more difficult situations and succeeded. We can too, with strong faith and God's help.
Hang in there, try to look and appreciate beautiful things around you.
Praying for you and sending positive thoughts!
Gina
0 -
Hello adagio,
Just saying hello to you. Thank you for posting and giving support to our sisters. I must apologize for mixing up your post with that of Valstim. She is the one having a possible knee surgery and I edited my post from you to her instead.
With all the posts here and me being a slow reader who just uses a smartphone to post, I am so prone to typo/grammatical errors and getting mixed up. Many times, my long posts gets deleted before I can send them while trying to browse back on the previous posts and this is the reason why sometimes i just rely on my poor memory than go back. What's even funny is this thread has now become global with many ladies coming from all over the world and it is a bit difficult to keep up with the posts. I think we can already conduct our own Miss Universe pageant on this thread. Lol!
From your posts, i see that you've been to so many places. That's awesome. You must have seen so many beautiful structures and spots already. How i wish i could travel. Do you have pictures of some of the places you've been? Maybe it can cheer some of us with those pictures and encourage others to take pictures of places themselves. That would be cool.
Are you the one who is planning to go to Mexico? That would be nice. I hope you will have the best relaxing vacation there eating chimichangas and burritos. Lol!
Take care and i wish all good things continue to be upon you. Kind people are usually blessed.
My warmest wishes,
Gina
0 -
Hello 4everstrong,
Miss France won the Miss U!!! It coincided with the 70th anniversary of the France-Phillipines friendship day. Cool!
Hi marias,
Miss Colombia was 2nd runner up this year. Last year, was first runner up. Maybe next year, your candidate will win. Miss Venezuela didnt make it to the top 13 finalists this year. Sad, she was one of those expected. Countries like Colombia, Venezuela, Puerto Rico, USA, Brazil, France, Australia, Canada, Britain and India almost always land in at least the semifinals. Latina beauties are almost always serious contenders. I am always excited to watch beauty pageants even at my middle-age. Filipino fans are always enthusiastic and very supportive of their representatives such as the Miss U and in boxing. These are the pride and little joys that our country has. Pardon my enthusiasm.
Hello to Rhonda, Hanieh, Maggie, Lamis, and other wonderful ladies and gents on this thread.
Gina
0 -
Hello everyone,
I can see that you have been busy.
Adagio, thank you for letting us know that you are going to Mexico. I hope you have a nice time.
Kath, I hope you settle down and that you get through radiotherapy without any problems. Do not take it for granted, even though it seems much easier than chemotherapy. It does have side effects and the treatment is toxic. I do hope you manage to relax somehow during the weekend break. Are you all alone in Adelaide? Are you getting support from your family?
Gina, your chemotherapy journey will soon be over and you can get back to a more normal life.
Val, thank you for the information about myrrh and frankincense.
Marias, I read your Spanish link about a possible blood test that would be able to show signs of possible development of breast cancer twenty years before it develops. I do have doubts about this. It could never be absolutely sure and does it mean that if you are told through the blood test that you are at risk, you will then have twenty years of your life worrying about all, and then it never happens. If it does, it could be due to the stress of twenty years of worrying! Will Big Pharma cash in and put you on, just in case pills for twenty years, with untold side effects.
I saw the mention of estradiol, which explained to me why you were interested in estradiol. You said you had been told you had high levels of this hormone. What was the implication of this, since you are triple negative. In the paper all of the research seemed to be concerned with triple positive.
I hope all is well with you. Just concentrate on getting through your treatment.
To my fellow Brits, I am very disappointed to see that you are not posting in the thread that I started especially for you.
To all of you, I was wondering if any of you run your own blogs and, if so, how you are getting on with them. I really mean blogs not connected with cancer.
That is about all for today. The events in this country (UK) are unbelievable lately. Our MPs are suffering from mass hysteria and verbal diarrhoea. They should engage brain before spouting off!
Fond thoughts.
Sylvia xxxx
0 -
Hi Sylvia/all
Hope everyone is doing well both those who are still in treatment and those out on the other side.
I have not been on the thread for a while now due to work, family commitments etc etc and need to catch up on everyone's news. I love looking through to see everyone's lovely photos your beautiful flowers Sylvia and the photos of your family Hanieh, your daughter is so pretty. I don't like to talk too much about cancer but value the friendship of those who have been through the same journey.
I have tonight got back on my exercise bike after a couple of months with no exercise, I had started to have pain both in my back and hip and thought it's either doing too much or it's something that needs checking out. I stopped all exercise and the pains went. However I have gained about a stone in weight
so I am back exercising but not going over the top. Hopefully when the weather improves I will get out more a do more walking . It's no fun at the moment as the weather here in the U.K. is quite miserable... dark when I go to work and dark when I come home. I am still also trying to find a good yoga class. Next week I have my 3 month check with the Oncologist on my last visits they have just checked underarms, neck etc no blood tests or scans unless there are any problems I suppose. Is this normal or do any of you ladies have regular scans? The ladies in the US seem to have more thorough checks than here in the U.K..
I don't know about anyone else but I wish that for once I would listen to the news and there would be world peace ... this is what I pray for. At the moment it's all about the vile Mr Trump, I do hope he doesn't visit .... I wonder if he realises what awaits him ... I'm sure it won't be a warm welcome.
Anyway wishing everyone a lovely evening .
Amanda
xx0 -
Sylvia
I have always loved my visits to England. As a child my father traveled there often, as most of his family had migrated there from Ireland. Then, my husbands job, but with smaller kids in tow, I was limited to London..
Can you explain Brexit and what it really means?
0 -
h
Hello everyone,once again I will have to try a series of short posts as I typed a very long message a couple of nights ago only for it to lock up and not post! Aargh!
0 -
In terms of my treatment I had a mapping ct scan last week and am due to start radiotherapy on Friday for 3 weeks. Kath I was reading that you are travelling such a long distance for your treatment and really feel for you. I am lucky in that my hospital is only a short half hour drive away. Sylvia I asked in a previous post about skin care and I've been advised by the team to use. Aveeno moisturiser or aloe Vera
Chris x
0 -
I'm trying really hard not to spend too much time looking at sites realting to cancer as I was finding it was making me overly anxious - not sure if anyone else finds this? Once my radiotherapy is finished I plan to return to work. Part time and try to pick up where. I left off. I know that things will never be quite the same but I don't want cancer to rule my life. How have those of you who have finished treatment managed to move on?
Chris xx
0 -
Gina -- hope you are feeling OK after your chemo and that they were able to find a good vein for the infusion. Rest lots and look after yourself. One more treatment to check off the list now - yeah!!
0 -
Hello Chris and Amanda,
I was so glad to see you back on the thread and I shall answer your posts later on today after I get back from running a few errands.
Thank you Val for your post and I shall reply to you as well, later on. I can certainly explain Brexit to you.
Thinking of you and talk to you soon.
Sylvia xxxx
0
