Calling all triple negative breast cancer patients in the UK
Comments
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Hi Sylvia
The other breast cancer site is:
http://www.breastcancercare.org.uk/
This is where the October Optimists formed. if you go to the link Going Through treatment, then Chemotherapy, then Chemotherapy monthly threads, October optimists is there, although it's a bit quiet at the moment so our thread is a way down the page.
Big leggy (Sandra) is in our Facebook group and has just finished her chemo, if I remember correctly. I will send her a message asking her to pop in and update you on her progress.
Thanks for your support everyone, over my side effects. I would love to be able to go back to school as late as September, but that would mean six months on half pay, which I really can't afford. By going back at the beginning of April, I will only have a couple of days of school, then the Easter holiday and it will mean full pay from the beginning of April for the summe term and the whole of the summer holiday.
The summer term is not quite as busy as the rest of the year because we lose our exam classes. Also I am part time so only do 3.5 days, so I am hoping I can cope. I think it is possible I won't get all my classes back anyway as they have been distributed amongst other teachers, so I may find I do less teaching than usual and have more of a support role. This would take some of the stress off for the summer term. I am going to negotiate all of this anyway. My dilemma is at which point I go to the doctor to get a fit to return to work certificate. Too soon and I may not appear very fit, but too late and I won't have time to confirm everything with school and get it in writing!
Thanks for the reassurances re my aches and pains. I am hoping that it will settle down. I am not actually in pain it's just that my hands feel stiff and my legs ache sometimes when I get up or go up stairs.
Regards all and enjoy your day. I have no 5 radiation later on.
Anne
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Hello Michael
I am always glad to
hear from you and I hope you had a good time in England. It is
strange that although we are known as the United Kingdom, or Great
Britain, we tend to dissect ourselves into our separate parts. I
always say I am English (although by my maiden name in some bygone
past my ancestors were Scottish) and others seem to say Scottish,
Welsh or Irish (Northern Irish). When I was filling in forms during
treatment I noticed there was nothing for English, just British and I
kept crossing out British and putting English! This got me questioned
quite a bit. However, I never use the term British, which I see as a
bureaucratic or official term. I remember Gordon Brown going on about
what Britishness is and I do not think he ever really explained it!!!I was so glad to know
that Alex had been to the Samaritans drop in centre in Belfast and
felt much better afterwards. Sometimes it is just a question of
finding someone with whom to talk and sometimes it has to be someone
with whom you are not close. Let us hope he will be much better now.I can understand how
difficult next Tuesday March 4th will be for you and Alex,
but somehow you will find a way to get through it. What is the Ulster
museum like? I am sure the two of you will have a nice dinner
together. I am sure that March 12th will be another
difficult day. I think one way of getting through these difficult
days is to try to think of all the happy times you had together.
Dinner altogether on the Southbank in London sounds like a good idea.
We shall all be thinking of you and yours on those days.I know very little
about computers but Raymond is the expert. He also has been using
Windows since 3.1. He thinks XP was one of the better versions, Vista
was a disaster, and Windows 7 is what Vista should have been. He will
not go near 8. He actually prefers Linux systems, such as Mint. I
understand little of any of this and am not really a computer person.
I hear so many people complain about their computers. I just use it
for e-mails, writing letters and simple spreadsheets. What I do like
is doing research on Google. Raymond's idea of leisure reading is
Linux magazines and Computer Active. Recently he was reading a book
entitled Nothing!!! I am very political and philosophical and love
literature, current affairs, and anything to do with the medical side
of things, health and nutrition. I also love foreign languages.I was sorry to read
that you have been having a lot of pain since R-CHOP six months ago.
That treatment sounds a lot to deal with. Which of the drugs has
caused your joint pain?I did find the
following on the internet that I thought might interest you but you
probably know already as I know you are very informed.In Germany in 2012,
bendamustine has displaced R-CHOP to become the first line of
treatment for indolent lymphoma (a less aggressive subset of
non-Hodgkin lymphoma).I also read that of the
various regimens R-CHOP emerged as the regimen with the least
toxicity but similar efficacy.Best wishes to you and
Alex.Sylvia.
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Hello adagio
It was so nice to hear
from you. It is strange that this thread was taken off your
favourites so it has not been telling you there were new posts.
Strange things happen on computers. I was glad to know you have
caught up with everyone.It looks as though
everyone going through chemotherapy for the first time has now
finished, but we do have Carolben going through chemotherapy for mets
and she needs our support. We now have apandy (Anne) and bigleggy
(Sandra) going through radiotherapy. This is good news for all the
newly diagnosed patients who may be viewing but do not feel confident
enough to post, that you can get through this treatment and go on to
lead a normal life.I am so glad to know
adagio that you did not break any bones. With osteoporosis this would
not have been good. I have been told that bruising is much more
painful and takes a long time to heal. A friend of mine had a nasty
fall some weeks ago and has been in a lot of pain. She finally got an
x-ray last week and was told she had bruising to several parts of the
knee but no breaks. She has been told everything will take a long
time to heal. She also has osteoporosis so she is glad she has no
breaks. She is also doing some physio.Are you doing anything
for your osteoporosis? I am still taking strontium which I have been
taking for about a year but I have no idea if it is doing any good as
I cannot get a DEXA scan. They are strictly rationed here.Please keep in touch
and post any useful information you find about breast cancer
treatment etc.Fond thoughts from
Exmouth to Vancouver.Sylvia xxxx
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Hello apandy (Anne)
Thank you for the link.
I have looked it up and it is most interesting. I can see that the
website functions much like bc.org but that it is UK based. I suppose
I have kept with bc.org because that is what I discovered in 2009
when I was looking for information about high calcium and
hyperparathyroidism. I then started reading calling all TNS out of
interest, in 2010, when it was all new, and then decided to start a
thread for the UK because TNBC seemed to be in the dark ages, even
more so in June 2005, when I was diagnosed and went through all my
treatment without any help from forums. I just read and read and
discussed what I found with my consultants. I suppose it would have
been a completely different experience had I been posting while going
through treatment.Thank you for updating
us about bigleggy (Sandra). I was so glad to know that she has just
finished her chemotherapy. Give her my best wishes.You ladies must be very
busy with all your different posts. How do you manage it all?I do understand your
situation with regards to going back to teaching. I hope it all works
out for you. Just monitor how you feel day by day and see how you
feel when you have to think about going to the doctor for a
fit-to-return to work certificate.I do think it is a good
idea to have a complete medical check up when you finish breast
cancer treatment. Will you be having any scans at the hospital to see
that everything is alright? Will you be having an ECG to check that
the heart is alright? With your GP a physical exam would seem a good
idea, along with a full blood test to make sure everything is working
well. If it were me, I would also want a DEXA scan to see if my bones
had been affected by the treatment. I think it is a good idea for the
newly diagnosed to have a complete check up before treatment to show
up any problems and then a complete check up after treatment to show
how the treatment may have adversely affected a person.I do hope your aches
and pains and stiffness will go away.Fond thoughts.
Sylvia xxxx
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Hello everyone
I have just been
researching bicarbonate of soda in a book that I have by Reader's
Digest, The World's Best Kept Health Secrets.You probably all know
that bicarb is very good for easing the pain of cystitis or urinary
tract infection. The bicarb makes the urine less acidic so it is less
painful when you urinate. Obviously if the bicarb makes your urine
less acidic it will make your body less acidic.Gill mentioned
magnesium. One good thing about this mineral is that it is needed for
deep and uninterrupted sleep, so you need to eat your deep green
leafy vegetables and pulses.She also mentioned
iodine and I have just read that it is also in oily fish and eggs.By the way, you might be interested in looking up the following link about breast cancer risk.
http://www.cancer.gov/bcrisktool/
Thinking of you all.
Sylvia.
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Hi Sylvia
They are interesting points that you make about identity. A few weeks ago I was having a discussion with one of the locals here who says that he would always describe himself as British. I was pointing that he couldn't possibly be British as NI is not part of Britain. It is part of the UK but certainly not British.
I don't know what the Ulster museum is like, Alex tells me that it is fantastic, so I will let you know. I don't think it will be so great that you will all want to jump on a flight to come and see it, though, perhaps the Titanic centre is worth the trip.
I think Vincristine is responsible for the joint pain but I am finding 2-3 ibuprofen is helping. Before we had Winnie the dog I exercised each morning on the Wii Fit and then went and showered but now walking Winnie out in the morning takes priority. Walking though is not really the correct word for exercise with Winnie, strolling is more like it, plus, I sometimes have to drag her out of bed at 10:45,at least out body clocks are pretty much in sync.
Michael
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Hello Michael
I was very interested
in what you said about your discussion with one of the locals and the
fact that he describes himself as British. Of course, it is true that
this country is always described as the United Kingdom and Northern
Ireland. I would be fascinated to know what that person feels within
himself that makes him feel British. It is the same with people who
do not understand the meaning of Great Britain and are always saying
we should put the Great back in Britain, when Great just means
England and the other parts, just as we say Greater London.
Incidentally, what do you feel? I think I remember your roots are in
London. We are such a strange country. I do wonder what will happen
if the Scottish people vote to become independent. There is a lot of
scaremongering going on, but I think the Scottish people should be
left alone to make up their mind. After all, they were an independent
country before the Act of Settlement in 1707 (union). I do wonder what will
happen to this country in the future. Since we have devolved
governments in Scotland, Wales and Northern Ireland, it might make
sense to have an English parliament and have Westminster as a central
government. That is if Scotland does not separate. I cannot
understand all the fuss about the pound. After all, the Channel
Islands and Isle of Man are independent and have the pound, so why
not Scotland?I shall be interested
to know about your visit to the Ulster Museum.I was glad to know that
Ibuprofen is helping with the pain caused by Vincristine.I did laugh at what you
said about your dog, Winnie. She sounds lovely. I am sure that
'walking' does you a lot of good really. They do say that walking is
the best exercise and never mind if it is strolling rather than power
walking. Perhaps you will both be getting up a bit earlier now that
the mornings are getting lighter.I shall be thinking of
you as those important dates arrive. Keep well and take care of
yourself, Alex and Winnie.Best wishes.
Sylvia.
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hi Sylvia
I got my brca results today NEGATIVE...soooo relieved, I don't have to have more surgery now and I know my sons can't have the faulty gene either, they asked me to sign a consent form for my blood sample to be checked against any future genetic progress which I was happy to do, they did say that the females in my family would be able to be monitored from the age of 32 if they wish too so that's a good thing for the younger members
I got my new bike a couple of days ago and thought I would go on a little bike ride to try it out, it was not a good idea, I'm clearly not ready for bike riding yet, I ended up with chest pains and sent the hospital for a chest X-ray and an appt for an ECG on the 13th march, they want to check rads hasn't damaged my heart.
I've received my new book about iodine and breast cancer, I'll let you know what I think of it when I've had chance to read it....it looks interesting though....I got my aliminium free bicarbonate of soda today so thought I'd start my one teaspoon a day in water....soooo gross...I don't know if I'm going to keep that up, any ideas how to disguise the taste?
Speak to you soon
Gill
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Hi again everyone
I had a message from Sandra (big leggy) who is in hospital at the moment (and has been for the last week) for neutropenia sepsis, and she has had an infection. Her chemo had finished two weeks before this happened, so I guess even after chemo you aren't fully out of the woods. She did tell me she will be going ahead with her radiation treatment over a shorter period, and expected that to be done by 14 March. She has difficulty posting herself as can't get internet access easily, so I offered to update you. The good news is that her genetic tests came back negative.
Anne
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Hi Sylvia
Re medical tests at the end of my treatment, I know I will be seeing my oncologist in the last week of March but am not aware of any testing being done at that stage. I'm not sure an ECG or other medical tests are routinely offered after treatment.
Regards,
Anne
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Good evening Sylvia
Even though I was born in South London I used to be very proud of my Irish heritage. My mother, even though she had been forced out of Ireland because she was an unmarried mother, had fond memories of home and was always talking about it. I have always been a great supporter of the underdog and Ireland was viewed that way. When I came to live here people would ask where I was from and I would explain that I was born in London but my heritage is Irish. In the 14 years I have been here only one person has ever accepted that explanation, I have an English accent and therefore I am English. A few years ago I began to think, I am English. I have very little in common with the people here and everything I have has really derived from England. I feel more at home when I visit England.
I think identity is an interesting matter. Janette was somewhat expert on the subject. Their is a large Chinese population in Ireland and it always throws me when a young Chinese person speaks and they have a broad Belfast accent. ☺
Michael
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jackpot - hope you are feeling better soon - how awful to get the chest pain - perhaps your hemoglobin is low from chemo. Take it easy!! Hope all tests come back as normal and that it is just a matter of doing too much too soon.
Leggy - sorry to hear of your neutropenia sepsis - get well soon.
I unfortunately had another nasty fall yesterday and it has put my almost healed arm back to square one. Chemo and radiation were never this painful - I just don't understand what is going on?
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Hello Jackpot (Gill)
I was so glad to know
that your BRCA results have come back negative and I can understand
how relieved you must be for yourself and your sons. Put everything
behind you now and look forward. Even though I was not put forward
for genetic testing, I was asked when I first started treatment to
give a blood sample to be sent away for research purposes. I was told
I would not hear anything about it. Much later I requested to see a
genetic nurse and had a long interview with her, but she told me that
she would not be referring me to the genetic consultant as my case
was not strong enough, given my age on diagnosis. She also took a
blood sample for DNA to be stored at the hospital for future use if
need be. She also told me I could get a private test for £3,000 at
that time. It could be that genetic testing is becoming more common
now. In my family, so far my maternal grandmother and I are the only
people to have had breast cancer and my grandmother died of it in
1955. She had a mastectomy and radiotherapy but later had metastases
and died. I have three female cousins on that side and so far no
breast cancer and nothing in any of their children. I have four
nieces through my brothers and they are fine so far.I am not surprised that
the bike ride was too much for you. I cannot emphasise enough that
you must give yourself plenty of time to recover from all this
terrible treatment and that it will take a long time for you to
recover your strength and energy. Your body has been filled with
toxic drugs and your immune system has taken a beating. I do hope all
will go well on March 13th when you have an appointment
for an ECG to check on your heart.I am surprised that
this was not done automatically after finishing treatment. I had an
ECG before I started chemotherapy and after I had finished. I also
had a CAT scan and a bone nucleide scan before and after all my
treatment. I think all newly diagnosed patients should have a
complete medical check up before they start their treatment so that
they know what state of health they are in to tackle the cancer
treatment and then to have one after treatment to be aware of any
changes. We know that the taxanes paclitaxel and docetaxel affect the
heart, as does Herceptin for HER2+ receptors. Doxorubicin
(Adriamycin) and to a lesser extent epirubicin can damage the heart.
This is why scans are given to see how well the heart is pumping.I shall be very
interested to know your comments on the book on iodine and breast
cancer.I was interested to
know that you had found some aluminium free bicarbonate of soda. I
did not know you could get this. I have just been buying a tub of it
in the baking section of the supermarket. When I take it I just put a
teaspoon of it in a little water and swallow it. I also use it as a
mouthwash and often soak my feet in a bowl of warm water with
bicarbonate and salt. It is very soothing and softening on the feet
and I find it relieves the peripheral neuropathy that I have from the
chemotherapy drug docetaxel (Taxotere). I understand why you do not
want aluminium, as there has been a lot of information about it with
reference to deodorants with aluminium in them. I do not think the
research came to any definite conclusion. I have also read about
aluminium and Alzheimer's disease, but again I do not think there
have been any definite conclusions.I think that the idea
of taking bicarbonate of soda to help prevent recurrence is that it
makes a body that is too acid more alkaline. I do not know whether
removing the aluminium makes any difference. Out of interest, where
did you find the aluminium-free bicarbonate of soda? I would think it
best not to add anything to it but just drink something afterwards.Take care of yourself
and keep in touch.Fond thoughts.
Sylvia xxxx
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Hello apandy (Anne)
It was nice to hear
from you and thank you so much for telling us about bigleggy
(Sandra). I was so sorry to know that Sandra is in hospital and that
she has been there for the past week. I understand that neutropenia
sepsis is very nasty. I was wondering whether she had the Neupogen or
Neulasta injections during chemotherapy to deal with low white blood
cells. You are definitely not out of the woods just two weeks after
chemotherapy. It can take months and years to fully recover and you
may never have quite the energy you had before. Please tell Sandra we
are all thinking of her here and hoping she will soon be better, can
get radiotherapy out of the way and then start to recover from all of
this. We are all glad that Sandra's genetic tests came back negative.
That is one less thing to worry about.I hope all is well with
you, Anne, and that radiotherapy is going well. We shall all be
thinking of you when you finish radiotherapy on March 11th.When you see your
oncologist during the last week of March, that would be a good
opportunity to tie up any loose ends with here and ask any questions
that are on your mind. It is good to have peace of mind as you finish
this cancer journey and begin a new routine of regular check ups and
mammograms. Do not be afraid to ask if you are going to be offered
any scans or at the very least an ECG to make sure all is well with
your heart. I know all hospitals are different but if all else fails
if I were you I would have a check up with your GP, a kind of MOT.Wishing you the very
best.Fond thoughts.
Sylvia xxxx
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Hello Michael
Thank you for your very
interesting post and I can understand your being proud of your Irish
heritage. It sounds as though your mother had a tough time. I share
your support of the underdog as that is how I am, and Ireland has
certainly had its share of unfair treatment through its history. The
English have definitely not treated Ireland properly throughout the
ages.It is strange that
people judge you by your accent and by superficial things. Of course
your heritage is Irish. I suppose it is quite difficult in Northern
Ireland because the English cut off that chunk of Ireland and called
it part of the UK. I suppose there will be different allegiances
there. Because a lot of Scots were settled there, does anyone today
say they are Scottish??? The accents are certainly very different
between the Irish Republic and Northern Ireland. What I found on my
short stay once in Derry and excursions into the Republic was that
the Irish are friendly and full of joie de vivre.I can understand how
you have begun to think you are English because after all you have
spent most of your life in England and you acquire the accent of
where you have spent most of your life. I can understand why you feel
more at home when you visit England. We are a mixture of our milieu
and upbringing and our genes, or so I think.I had to laugh at what
you said about the large Chinese population in Ireland and how it
throws you to hear a young Chinese person speak with a broad Belfast
accent. I have the same reaction here in England when I hear Asians
speaking with a broad Northern accent or other regional accents here
of which there are many. Here in Devon the broad Devon accent is
quite hard to understand and I think I shall always feel foreign
here. They say you have to be in Devon thirty years to be considered
a native and I have been here just twelve. I think you pick up
accents as young children and not as adults.Have a good week and
keep in touch.Sylvia
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Hello adagio
I was so sorry to read
that you had another nasty fall yesterday and that you are now back
to square one with your almost healed arm. What exactly happened to
cause you to have another fall? Apparently if you have bruised any
bones it takes ages for them to heal and the pain is nasty. We are
all thinking of you and wishing you well.Fond thoughts.
Sylvia xxxx
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Hello everyone
I just wanted to say
that I hope all of you will have a good week and that you will keep
in touch.Normandee (Norma), we
have not heard from you in a while, so I hope everything is OK.Peterandliz, linali
(Lindsay), susaninicking, Hero1967, InspiredbyDolce (Debra), I hope
you will all keep in touch.To Michael, we shall
all be thinking of you tomorrow March 4th the anniversary
of Janette's death.To Carolben, we would
all love to hear from you and to know that all is going well with
your mets treatment.Thinking of everyone
who is going through treatment for breast cancer of whatever kind.Best wishes.
Sylvia
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Hi Sylvia
Thank you for asking after me - I am fine thank you.
It has been very busy at School with staff illness, children with chickenpox and all sorts of things like HMI so I know you will understand. Also Bernie ( my partner) has had a knee operation and needed quite a bit of patience. Please read between the lines!
On top of it all I am not sure if I told you about my Mum? She had a massive stroke nearly 2 years ago and is severely paralysed and I help with her care. She wants to remain in her own home so my sister and I work hard with agency carers to allow this to happen.
This sounds like a sob story but far from it! I am well and happy and enjoying the feeling of Spring round the corner. I am so pleased to be feeling well and able to keep up the busy life I lead - there IS life after cancer! In some bizarre way being so busy keeps my mind from wandering to thoughts of cancer related worries such as reoccurrence (so natural for all of us).
Will still be involved in this thread Sylvia as I do enjoy catching up with everyones news and will always chime in if I feel I may have something useful to add to help.
Bye for now
Love Norma x0 -
Hello Normandee (Norma)
It was nice to hear
from you and I am sorry for the delay in responding but I could not
use the site yesterday as it was down for maintenance.I was glad to know that
all is well with you and I quite understand how busy you are with
your work as a teacher and your family responsibilities.I do hope your partner
Bernie is making good progress but I do understand that knee surgery
is quite complicated and there seems to be a six weeks' recovery
period, or at least this seems to be the case for knee replacement
surgery. I have seen a lot of it with neighbours here.I can understand the
huge responsibility that you have with your mother and it must be
very wearing for you, your sister and your mum.I was glad to know that
you are well and happy and enjoying that feeling of Spring coming
along and Winter coming to an end. It is good that you are leading a
normal and busy life and putting cancer behind you. It is true that
having an active life puts cancer out of your mind and you do not
dwell on it. The best therapy is to live each day to the full and not
worry about what might happen. Each day as we awake to the activity
of our life we do not know what will happen. Keep up the good work
and have a good weekend.Fond thoughts.
Sylvia xxxx
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Hello everyone
I hope you have all had
a good week and have been enjoying some better days without too much
rain.It has been very quiet
on the thread but I know you are all very busy with one thing and
another. I know that some of you have things happening next week, so
I hope that all goes well with you.Gill, let us know how
your ECG goes on March 13th.Anne, I think your
radiotherapy finishes on March 11th, so that will be a
reason to celebrate.Sandra, I hope you are
now home from hospital and feeling much better. I think your
chemotherapy ends on March 14th, so you will be another
one with reason to celebrate.To all other regular
posters, I hope all is well and that we shall hear from you when you
can.I think you will all
find a short article of interest that I found in the i paper last
week. I think it was on Monday. It is as follows:Research: Dormant
cancer cells revealed by new technique, by John von Radowitz.The first paragraph is
as follows: “Cancer 'sleeper cells' which are often the cause of
the disease's return after apparently successful treatment – could
be rooted out by a new scanning technique, according to research.“The imagining
method, detailed in a new academic paper, uses a radioactive marker
to spot dormant cancer cells that have temporarily stopped growing
while they store energy for future use. These dormant cells can be
resistant to therapies that target rapidly spreading tissue and are
often responsible for cancer recurring.”If you want to read the
rest of the article you might find it on the i paper website.Best wishes.
Sylvia
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Hello linali (Lindsay)
Thank you for your PM.
I hope all goes well with the painting.Thank you for your news
about BernieEllen. I am glad that things are not too bad with her and
that she is getting on with her life. I do understand that people
feel the need to move on after their treatment and I am glad to know
that they feel strong enough to do this and that the thread has
helped them. There has to be a normal life after cancer treatment.Thank you for your very
kind words about how I have helped you to be strong and to be able to
move on. I really do understand that people need to forget about
cancer as much as they can because it has been such a trauma in their
lives. I do understand also that being on a social networking site is
now a way of life for a lot of people and that they make friends
through this. It is making the world a much smaller place.I have noticed over the
years since I started the thread that small groups form to go through
treatment and then some names disappear and others appear. I do view
the Calling all TNS from time to time and have noticed a lot of the
original ones have disappeared and a lot of new ones have taken their
place. Some of us will have to stay to keep the threads going and I
do give full credit to Titan for keeping that thread going and it is
a huge one because of the population of the States. There is a lot
more information now about breast cancer and TNBC, so patients are
probably much more informed than they were just a few years ago.Wishing you and your
family all the very best.Fond thoughts.
Sylvia xxxx
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hi Sylvia
I'm finally start to feel a little stronger though they did say rads fatigue usually kicks in six to eight weeks after rads has finished so I might be speaking to soon.....I've can even manage about 20 mins on my bike now,
I finished the book on breast cancer and iodine and it did have some interesting arguements on how countries with a high iodine intake in their diet like Japan and Iceland have the lowest breast cancer rates, it says the iodine in our diets is taken in by the thyroid but if our intake was increased once the thyroid was saturated with iodine any excess would then be used to protect other organs as it is in every cell in our bodies,
I was reading more about bicarbonate of soda and about a man who cured his stage four prostrate cancer using a particular method, he was using grade A maple syrup and bicarbonate soda heated together in distilled water and drinking it, the idea being the cancer cells absorbed the maple syrup for the sugar and takes in the bicarbonate of soda like a Trojan horse and the cancer cell dies, there's a lot of information about it on YouTube....it was all very interesting and a nothing to lose remedy if you were stage four already
I've also just done a 16 day detox with black walnut hull, wormwood and clove, hard to say whether it's done any good but it has coincided with a return of energy so it seems to have been of some benefit
I'm going to start tidying up my pots and containers in the back tomorrow I can't believe how many annuals that should have died off have survived the winter, I've even got flowers on some of the geraniums...it'll be lovely to see some colour back soon...spring is definitely my favourite time of the year...
Take care
Gill
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Sylvia
I meant to ask your 8 years 8 months in remission...do you go from your diagnosis date or end of treatment date?
Gill
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Hello Gill
I was glad to know that
you are starting to feel a little stronger, just give yourself time.
It takes a long time to regain strength and rebuild your immune
system. Well done for doing twenty minutes on your bike. Your strong
determination to get a normal life back on track is going to be a
tremendous help.I was interested to
know that you had finished the book on breast cancer and iodine and I
have no problem at all believing that iodine deficiency or low iodine
can be connected to the development of breast cancer and other
illnesses. I have also read snippets about this from time to time.
Everything you have written about it seems to make sense. I think we
need to get it from diet and in the West that means seafood. I try to
have North Atlantic cold water prawns twice a week to help with this.
The best source is seaweed, but I do not seem to be very successful
in integrating this into my diet. There are all kinds of seaweed
available in the natural food stores and on occasions I have bought
packets of Nori Green Sprinkle, which I put into stir fries. Storing
it was quite troublesome as I could smell it everywhere I went in the
kitchen. I may try it again. What I do have virtually every day is
kelp powder sprinkled over our food.The more I read the
more I tend to think that all our chronic diseases are somehow
connected to vitamin and mineral deficiencies in our food or because
of our body's inability to absorb these nutrients. There is just too
much processed food and too much junk. I tend to shop in my local
supermarket as if I were going to local village shops, so I buy fresh
fruit and vegetables, then proper bread at the in-store bakery, fish
and seafood and fresh unsweetened soy milk and soy yoghurt, along
with raw nuts and seeds and some eggs, that is the basis of my diet,
along with gallons of decaffeinated green tea and my bitter apricot
kernels. I tend to avoid anything where you have to read labels.The story of the man
with the bicarbonate of soda and maple syrup is intriguing and he had
absolutely nothing to lose by trying it. The medical establishment
has no cure for cancer, so I do not blame anyone for trying out
unorthodox methods.I was really interested
to know that you had just done a sixteen day detox with black walnut
hull, wormwood and clove. How exactly did you do this? Was this all
in a liquid form? As you know, I took wormwood pills and astragalus
capsules, when first diagnosed and prescribed by the now-deceased
well known herbalist Gerald Green and I do not think they did me any
harm and may have helped my cancer not to have spread while I was
delaying making a decision about orthodox treatment. They are both
well known treatments for various illnesses in China and go back a
very long way. Please let us know how you took this detox. If you
have experienced a return of energy, then that is a plus.I rather feel we are
experiencing the onset of Spring. I have been watching the grounds
here come to life with daffodils, tulips and other bulbs and many of
the shrubs are coming back to life. Here in Exmouth, which is known
for its magnolias, they are already in bloom. I shall be so glad to
put winter behind me and pay a visit to our local nursery to buy
replacement plants on behalf of the residents for the grounds.I saw a short article
in yesterdays Daily Mail about how in certain countries they are
using a breath test to detect breast cancer. They are hoping this
will be able to do away with mammograms for a lot of women.
Apparently, this breath test takes only ten minutes and it will sort
out those who seem to have breast cancer and those who do not. Those
who do not will thus avoid exposure to radiation through mammograms,
but those who test positive for breast cancer will then have to have
mammograms. I was surprised to learn that this is already being done
in certain countries, but of course, once again, in the UK we are
behind.I was wondering what
you thought about the information I posted a couple of days ago about
dormant cancer cells being revealed by a new technique that would
identify dormant cells which come back to cause recurrence.We need to be on the
look out for all these bits of information so that they can be
brought to the attention of consultants/oncologists.I hope all is well with
you and yours. Keep up the good work.Fond thoughts.
Sylvia xxxx
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Hello Gill
I count the 8 years and
8 months (soon to be 9 months on March 20th) from the date
of diagnosis. That is how my oncologist does it. I must admit it does
seem a long time ago now.Do you find that the
forum is not working quite properly since they did the maintenance
work yesterday? It seems to be hit and miss whether I get
notification 'there is a new post' and when I logged in today I found
I was on page 1 of this thread and reading the first post way back in
2010. I also keep being asked to log in.Have a good weekend.
Sylvia xxxx
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Sylvia. I am not having any problem with logging in now, but I did a few days ago!
On the topic of iodine - when I was going through radiation, I took iodine in the form of drops every day - I did this because I read that if the thyroid is saturated with iodine that it will be protected from any stray rays of the radiation. I have heard that thyroid problems are not uncommon after breast radiation, and I wanted to do my part. I still take the iodine drops occasionally, but I do eat dulse most days which is high in iodine.
The thought of taking baking soda makes me heave although it can't be much worse than drinking salt water (just a pinch of all natural grey sea salt in a glass of water) which I do every day. Perhaps they act in the same way ! I also drink apple cider vinegar very day - both the salt and the apple cider vinegar are reputed for keeping the body alkaline! I also use a santevia water filter which they say helps keep the body alkaline. There is just so many theories out there, so I think we each have to do what we believe will benefit us. We are all so different, so what works for one of us will not necessarily work for the rest of us!
I do still indulge in coffee, red wine and chocolate - but in moderation of course, and not every day. I don't believe in deprivation . LOL
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Hello adagio
It is always nice to
hear from you. I was interested to know that you had also been having
problems with logging in but that all is well now. I sent a message
to the Moderators about some of the problems I was having and they
said they would add them to the list for the technical staff.I was very interested
in what you had to say about iodine and the fact that you took some
every day during your radiation treatment. I think that is a good
thing for the newly diagnosed to know and perhaps find out what the
oncologist thinks. Had I known about the risk to the thyroid I would
certainly have taken iodine drops as well. I still think that my
breast cancer was related to my undiagnosed over active parathyroid
problem but will never know probably which one caused the other or
whether they were both caused by something else. I tend to think that
a lot of our Western degenerative diseases are caused by
dysfunctional hormones and that these are probably caused by the
Western lifestyle and environment.I think you are very
wise to eat dulse daily as there does seem to be connection between
high seaweed intake in Japan and low breast cancer. I think I might
try the seaweed again. how do you take your dulse?Have a try at the
baking soda (bicarbonate of soda for us Brits). I have just taken a
teaspoon of it and mixed it in just a little water and swallowed it
down. It is not that different to salt as far as I can tell. I think
you are doing the right thing drinking apple cider vinegar. Apart
from helping to keep the body alkaline, it is supposed to be an all
round health benefit.You are right that
there are so many theories about that we all have to choose what we
are going to do and what we are not going to do, and we cannot be
absolute martyrs about all this, otherwise we shall drive ourselves
insane!We have to have a few
indulgences to make life bearable. I am pretty strict but am not
really aware of being so. I, too, have some dark chocolate, usually
85%. The 90% Lindt has disappeared from our local supermarket. The
powers that be are working on 100% chocolate to become common. At the
moment I have only seen it and tasted it in a shop called Chocolat in
Exeter. It is truly delicious.I do hope your arm is
getting better. Are you doing anything special about your
osteoporosis? I have been having a rest from the strontium and
calcium supplements for a few days. I do believe in giving the body a
rest.It is a lovely sunny
day here today and feels like Spring. How is it in Vancouver?Fond thoughts.
Sylvia xxxx
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Hi Sylvia! I have not forgotten how much you have helped me with all the information you provide, plus your emotional support! Hope you are feeling great and enjoying life. I am finally starting to feel like I am gaining some energy back. It has been a tough 3 years for me, but I am glad I am still here. I am going to go back a bit and catch up on this thread, always so informative! Again, THANK YOU for being you and for all you have done!
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Hello bak94,
It was so lovely to
hear from you and to know you are fine. I have not forgotten you and
clearly remember all you have been through. I always follow your
posts on Calling All TNS and I know you have had your ups and downs.
You deserve a medal!It is good to know that
you will soon be coming up to three years since you were diagnosed
the second time around. We are all sending you hearty congratulations
and keep up the good work. It must be three years for Christina 1961
and mcrimmon324 as well. Christina pops in from time to time but I
have not seen much of mcrimmon324 on the threads since shortly after
she moved from Florida to Pennsylvania. I remember how the three of
you American ladies went through your treatment on this thread, along
with Maria_Malta and BernieEllen. I know Bernie is fine, but I do not
know what has happened to Maria_Malta.You must have had
enough of doctors, scans etc. and ready to get on with a more normal
life. I do wish you all the best.Thank you for all your
kind words about this thread and I am glad that you found the
information useful and that our support helped you through.How is your everyday
life at the moment? I remember that you were studying hard.I was sorry to read
about your dog on TNS. I know how much you cherish your pets.Keep well, keep happy
and take care.Fond thoughts.
Sylvia xxxx
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Hello Jackpot (Gill)
I am just popping in to
say that I hope all will go well on Thursday March 13th
when you have your ECG.Have you seen the
programme The Idiot Abroad on Pick (Freeview channel 11)? It is very
funny but also profound. I needed something to make me laugh a few
evenings ago and I discovered this. It sure did the trick!Hello apandy (Anne)
I am thinking of you
today and hope that you have now finished your radiotherapy.Hello Bigleggy (Sandra)
I hope that you have
fully recovered and that you will have finished your radiotherapy on
Friday March 14th.By the end of this week
another group that has been going through treatment together on this
thread will have finished and be ready to start a more normal life.To Chatterbox2012
I shall be thinking of
you tomorrow when you celebrate Janette's birthday, March 12th.To adagio, linali,
susaninicking, InspiredbyDolce and Hero1967, who have all finished
treatment, be sure to let us know as you mark anniversaries, as this
will help and inspire others.Remember that our much
loved Carolben in South Africa is still having treatment for mets and
that she needs to know that we think of her and that she has our
support.To anyone newly
diagnosed, remember you are most welcome to come here as you go
through your cancer journey.To my fellow Brits,
remember in this country we have to keep fighting for our rights as
cancer patients. In the i paper the other day I was concerned to read
that “a 2012 pledge by David Cameron to make advanced radiotherapy
available to ALL CANCER PATIENTS has been broken, a government report
due out this week has found.”Make sure that when
going through treatment you are not short changed on anything and
keep on the look out for all the latest developments. We all need to
be proactive.Thinking of you all and
wishing you all a good week. Take advantage of any sunshine that
graces its presence in the UK. Think vitamin D!Fond thoughts.
Sylvia.
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