Calling all triple negative breast cancer patients in the UK
Comments
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Hello Sylvia and all,
The pics of your flowers are so lovely, it sounds like you work hard at it and it looks wonderful for your efforts!
As to my journey.....next Wednesday is my 2-month appt. with oncologist since finishing chemo. I haven't had much time to be nervous about it because I have been so miserable with the assorted ills I have been left with after chemo. To recap: carpal tunnel, partly torn rotator cuff, degenerative disc disease in neck with pinched nerves and nerve pain that would cause episodes of flaming pain. I have been unable to do almost any activity such as carry bags of groceries because of the pain it would cause. I had a steroid injection in spine about 3 weeks ago; the idea was that it would help the pinched nerve pain in shoulders. Instead it gave me a large pain in my spine that has only just subsided. Nobody was ever able to tell me why that happened. Also the nerve pain would radiate out from that spot to add to the general misery already present. Things seem to have calmed down somewhat but it has left me pretty shaken.
My general practitioner has wanted me to get on Neurontin, I have resisted and have gotten by with Advil during the day and Hydrocodone at night for the bad pain. I have appt. with orthopedic doc next week, we will discuss doing something about the carpal tunnel and the rotator cuff. I also have appt. with chiropractor and appts. with an acupuncturist coming up. Not the way I visualized my chemo recovery but whatever works will be fine with me.
Jacqueline, so sorry about your grueling 4th chemo session. I also was hospitalized with the chemo, but it was after my first session. I found the Taxotere very "taxing", to make a bad pun. It was hard to take in my opinion. As far as the aches and pains after your next session; I have taken Tramadol and it did not make me sick. It didn't help much either unfortunately but it might help you. Claritin also seems to help for some reason. That is regular over-the-counter Claritin, not Claritin D. I used to put my feet on ice packs if they burned, it sounds like you have some neuropathy going on. I can sympathize with that, as can Sylvia. I wish you the best, and hope your next session is much easier for you.
To Carolben, Normandee, Adagio, Susan, Linali, Mary Margaret, Jackpot, Sarahlou.....I do hope the sun is shining on all of you and you feel well and strong. We are all so far-flung in this world but I am glad I have met all of you; thank you Sylvia, for making that happen.
. The sun is shining here after 3 days of cold drizzle and gray clouds. It does make a difference!
Best wishes to all!
Mary (maryna8)
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Hello
adagio,Thank
you for your post. I can understand that you are very busy with
another wedding coming up and I can also understand that it is
stressful. It is not long to go now and I hope you will soon be able
to put your feet up and relax. It will probably seem too quiet after
the wedding and strange with both daughters married and one going to
the US.It
is indeed true that life is a journey and often a very bumpy one. We
never know what is going to happen with each new day. I sometimes let
myself think about the different paths my life would have taken at
very important parts of life if I had made a different decision. The
'what ifs' of life are very fascinating, but can probably drive you
mad if you think too much. I am sure we would all have liked to
bypass whatever path led us to a diagnosis of breast cancer.Here
in Exmouth life is getting back to normal now that the schools are
back after the long holiday. The seafront has still been busy because
September so far has been unusually warm and dry and we could really
do with some rain. There will always be some tourist activity because
there are always coached bringing in retired people to the hotels
here and tours to the surrounding areas. The big thing now is that
Exmouth is advertised as the gateway to the Jurassic coast. It ends
in Lyme Regis, which has the famous cobb, the setting of the film The French Lieutenants Woman with Meryl Streep.If
you have any suggestions for discussions on the thread, they would be
most welcome.Like
you I am thinking of Carolben and hoping she is coping with the
chemotherapy.Fond
thoughts.Sylvia
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Hello
Jacqueline1963,I
was so sorry to hear that you have been in hospital for a week and
tht you had a rough time after your fourth chemotherapy session with
docetaxel. It looks as though a lot of patients find docetaxel and
paclitaxel very difficult.You
must be very relieved to be back home. I know that docetaxel is hard
on the hands and feet. As I have said on the thread, neuropathy in my
feet is the worst side effect that I have from my chemotherapy
treatment with docetaxel. I have been told that there is nothing to
be done about this and I have learned to live with it, but sometimes
it really bothers me. It is not painful but the soles of my feet feel
hard, stiff and numb. Even though they are well moisturised every
day, it feels as though they are dry but they are not. My toes are
also numb. It is all a very strange sensation that is hard to
describe. Now I have osteoarthritis in the big toe on the left foot
and I am trying to find out whether this is also connected to the
treatment. I have been told by a podiatrist that the osteoarthritis
that I have is not gout, otherwise I would be in a lot of pain and I
just have twinges. However, I am investigating further because I have
read that gout may be caused by excessive cell destruction associated
with chemotherapy treatment.I
think you will find some relief by soaking your feet with Epsom salts
in a bowl of warm water.I
also soak my feet in fine sea salt and/or bicarbonate of soda and I
find it brings temporary relief.You
are right to keep them well moisturised.If
you get any information about hand and feet problems from docetaxel,
please post and let us know, if you feel up to it.Please
let us know if your oncologist decides to delay treatment for a week
or if she decides to reduce the dose. This would be useful
information for everyone.I
have read that inflammatory breast cancer shows as more of a spread.I
hope all will go well with your mastectomy when you have it, but for
the moment concentrate on looking after yourself and getting through
the next two treatments of chemotherapy. Concentrate on the fact that
you have four behind you and now just two to go. Take it easy because
the side effects of chemotherapy tend to accumulate as the treatment
goes on and you might feel very tired.It
is hard to know what to do to ease aches and pains and I know that a
lot of people just prefer to take some pain killers. I have read that
Tramadol can make people feel sick and I think that Tramadol is
supposed to be addictive. In fact, I tend to think that all these
painkillers can get people hooked. Even everyday painkillers such as
ibuprofen and paracetamol get bad write ups and I would not take any
of them, but we are all different.Thank
you for your kind words about the grounds to the apartment complex
where I live.It
has been a sad time here with two friends dying. These are the parts
of life that are inevitable but I shall miss both of them. The
neighbour who died from metastatic breast cancer was just 55 and such
a lovely woman. The other neighbour would have been 90 in October and
had a good life. He had volunteered for 26 years in a Cancer Research
shop, so they will miss him. He was still working there when he died.I do
hope Marymargarethope is alright and will be well enough to post and
let us know how she is getting on with her chemotherapy. She must be
very busy with her four children.Can
you explain what a play tent is?We
are all having a good late summer in the UK.Raymond
and I have been following all the news about the Scottish
independence referendum with great interest. We both feel there has
been too much interference from the politicians in Westminster and
that they are hypocrites. It is up to the people of Scotland to
decide what they want to do and we do not think the three leaders
should have gone running up to Scotland spouting all their
scaremongering. All three of them are self interested toffs concerned
only with their own positions. The media and big business have also
been scaremongering. We hope the people of Scotland will make up
their own minds and do what is good for them and Scotland. We think
that Scotland appears to be much more caring about its people and
has, or is trying to have, a much more equal and fairer society.Thank
you, Jacqueline, for your kind words about the thread. It is the
wonderful women and not forgetting Michael who make this thread what
it is. Enjoy the rest of the mild weather.Fond
thoughts.Sylvia
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Hello Mary,
Thank you for your post. I have run out of energy at the moment but I shall definitely reply later on today. I was sorry to hear that you are in so much pain.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I was just sorting out my PM section and felt sad as I saw the names of women who played and important part on this thread and then suddenly stopped posting. I am thinking of Dulcie in the UK, liv_ in Australia, and Maria_Malta in Malta. I can see no activity anywhere from Dulcie and liv_ so just do not know what has happened to them. I saw that Maria_Malta still appears to be viewing, so Maria, would love to hear from you and know how you are doing.
Does anyone know what has happened to InspiredbyDolce (Debra)? She was so active on the forum and has not been seen for a long while.
Best wishes.
Sylvia xxxx
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Hello
maryna8 (Mary),Thank
you for your kind words about the flowers. It is a lot of hard work
in the grounds here but very satisfying when it looks nice.I
shall be thinking of you on Wednesday September 17th when
you go for your appointment with your oncologist. I do hope
everything will be alright. Make sure you ask questions about
anything that is bothering you. I do hope the oncologist will be able
to help you with some of the problems in order to alleviate your
pains etc. It looks as though the steroid injection did not work for
you and gave you even more problems. I think if that were me I would
want to know why. You should not be having all these problems as a
result of your chemotherapy.Doctors
answer to all this pain seems to be painkillers but they just mask
the problem and cannot be a long term solution.What
day are you seeing the orthopaedic doctor? Will it be at the same
hospital? It sounds as though you are in for a very busy time with
all these appointments and that you will not have much time for rest
and relaxation. Let me know how you get on with the chiropractor and
the acupuncturist. Be very careful about the side where you had your
mastectomy. Is it alright to be having acupuncture? Please have a
good talk with your oncologist about all this on Wednesday.It
looks as though neuropathy is a long term side effect of docetaxel
(Taxotere) and probably of paclitaxel (Taxol). It seems that it is my
only long term side effect or at least the only one of which I am
aware. It looks as though hands and feet need to be iced during
treatment.In
September we in the UK, normandee, marymargarethope, jackpot and
Sarahlou have been spoiled for mild weather and sunshine. It is good
that we can have these links worldwide and get to know people with
all different experiences and characters and not just defined by
their breast cancer.How
are things going with your husband?Thinking
of you and sending you fond thoughts.Sylvia
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Hello Sylvia!!
Thanks for asking about my husband, he is pretty much the same as before. He has not been going to the office though, and is more tired than before. He sees his kidney doc at the end of the month and he will probably find out some more about when he will go on dialysis. I think it probably won't be long, but I've been wrong before. He doesn't leave the house much, his oxygen goes so low when he walks that he avoids it. I have suggested a wheelchair but he does not want it. We have to monitor his fluid and salt intake carefully to avoid fluid overload, that is because of the congestive heart. So that's pretty much it in a nutshell. With all his troubles he doesn't complain as much as I do!
I do know that the chemo didn't cause all my problems. I had the carpal tunnel before chemo, it just made it worse. I caused the rotary cuff partial tear because I was doing something I shouldn't have been doing while on chemo. And I'm sure I had the degenerative disc disease before chemo, it just never bothered me before. I was so overwhelmed by all the different pains, including nerve pain, that I went for the steroid injection when the Primary Doc suggested it. I also did consult an orthopedic doc and my oncologist beforehand and they saw no problem with it. But I wish I had never done it, and I will never have another one. On the other hand, I know a LOT of people that have had them and say they are great. Not for me.
The orthopedic doc appt. is on Tuesday, and the oncologist is on Wednesday. I plan to ask them both about the chiropractor and the acupuncture. And stress to them that their advice on the steroid shot didn't turn out well! They are in the same building affiliated with the same hospital. I will probably consult with the orthopedic doc about perhaps fixing my carpal tunnel too. One thing about all the problems I have been having, I haven't thought much about cancer. I probably will be thinking about it on Wednesday though!
I did use the ice on my hands and feet for the last few chemo treatments. But I suspect the neuropathy was there from the first session, because I recall my feet feeling funny at that time. My feet are not too bad, could be worse. My hands and fingers are numb at times, but I'm not sure what is caused by the neuropathy and what is from the carpal tunnel.
I had better close for now. Thanks for your thoughtful messages, it means a lot. I shall post again soon, I hope.
Best wishes!
Mary
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Hello
Mary,I do
hope that things work out for your husband when he sees his kidney
doctor at the end of the month. Will he feel better when and if he
goes on dialysis? It cannot be much fun spending so much time
confined to the house. He needs to get out in the fresh air I would
think and to get a little exercise. I can understand his reluctance
to have a wheelchair. Everything must be so difficult for the two of
you. My heart goes out to both of you. Do you have anyone helping
you?What
exactly is a rotary cuff partial tear? It is something of which I
have not heard.It
makes sense that chemotherapy can probably make existing conditions
worse.I do
not know what to think about the steroid injections but they seem to
be very much in vogue here in the UK. I think they are a way for
doctors to get patients off their backs as they give temporary
relief, but they do not cure anything. They are just masking
symptoms.I
got to know quite a bit about steroid injections when my brother here
in Exmouth was going through a lot of knee pain. The whole thing went
on from December 2013 to the summer of 2014 trying to find out what
was wrong. It turns out that he has a meniscus tear in one of his
knees. He had one steroid injection earlier this year and that seemed
to work for a while. Then in May he insisted on having another one
and that did not seem to work at all. All this time he was on strong
painkillers. He finally got an MRI scan and was told he could have
surgery but the odds of it being successful were low. He is just
living with it now. I hear of so many people here being given these
steroid injections. I can understand that you do not want another
steroid injection.Good
luck on Tuesday and Wednesday. Please let us know how you get on.At
least you can see a positive side in all of this in that it has taken
your mind off cancer.That
is about all for now. Thinking of you and sending fond thoughts.Sylvia
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Hi Sylvia
I am checking in to catch up on the posts. I have a lot of stuff about the latest research to put on the web site. I seem to be very busy but I am not sure what I am doing to be so occupied, if that makes sense? Maybe it is part of the aging process where time appears to pass so quickly. I often wonder how on earth I had time to go to work.
Michael
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Hello Michael,
It was nice to hear from you. I shall look forward to reading the information that you put on the website.
I do know what you mean about time and ageing. I am constantly trying to find some leisure time for my self. From the moment I get up in the morning I really only seem to sit down during the day for mealtimes. I like to be thorough with the thread and I am also the same with my work as a director in the apartment complex where I live. The work is non-stop and it is rather like painting the Forth Bridge. There is a lot of administration and dealing with contractors. I also like to be hands-on in the grounds to keep them looking tidy and beautiful. I have gained experience in all sorts of things and it is very far removed from teaching French or English as a second language and from my background in literature. However, it all keeps me active, physically and mentally. The days seem to fly by. I can understand how you feel.
I keep a keen eye out for any news about breast cancer in general and TNBC in particular but I cannot think there any real breakthroughs away from chemotherapy and radiotherapy, which are so devastating to the body. I am particularly concerned about the number of younger women being diagnosed with breast cancer. I read the Calling all TNS and the constantly newly created threads on TNBC and it seems to be all about younger women being diagnosed. It is so awful. It has to be connected to lifestyle and the environment.
This thread is a bit quiet now but I cannot think it is because women in the UK are not being diagnosed. They may all be on Facebook as, especially for younger people, this is a way of life.
have you any thoughts on Scotland?
Wishing you all the best.
Sylvia
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Good afternoon Sylvia,
I have updated the news page on the web site with about ten new pieces of research. There is some interesting stuff.
I think the future of treatment lies in the development of targeted antibodies and personalised treatments. It is logical to link the rise of cancer, especially in the young to lifestyle/environmental factors but is the evidence there and if it is can we rely on it? One week we read that we consume too much salt the next that we may consume too little etc. The one thing I personally am convinced of is that children are too protected from exposure to bacteria and that has a detrimental effect.
Janette used to be the chair person of the management committee for the block we lived in on London Road Brentwood. It was a thankless task and she was relieved to have move.
I really don't know about Scotland. I think the no campaign has been a disaster and the scare stories will have driven the undecided into the yes camp. One would have thought that the English would know by now that us Celts are contrary folk
.The weather here is very warm and pleasant, I hope you have the same over there.
Michael
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Hello Michael,
Thank you for your
post. I shall certainly have a look at the web site during the
weekend.I think you are
right about the future of treatment lies in the development of
targeted antibodies and personalised treatment but will it make the
treatment any less lethal? Herceptin is a targeted antibody for HER2+
and I know it affects the heart. My neighbour who died very recently
of metastatic breast cancer and was triple positive had a lot of
Herceptin, both for her primary cancer, for which she was in
remission for about eighteen months, and the metastases, but it did
not prevent her death. I still think we need to put more emphasis on
prevention, especially lifestyle and the environment.It is true that all
the information about food is very confusing and this weeks
nutritional hero is next weeks nutritional enemy. The experts seem to
have gone full circle about fat. I just keep to a simple diet of food
in its most basic form and keep away from processed food. The more
difficult thing to control is environment. I have got rid of all
plastic food containers because of warnings about them.I think you are
right about children being brought up in too hygienic an environment
and not being allowed to run around outside.I was interested to
know that Janette had been the chairperson of the management
committee for your apartment block on London Road in Brentwood.
People do not realise that apartment blocks have to become a
business, registered with Companies House, and with all the
complications of a small business. Raymond and I have been doing this
for nearly thirteen years, ever since we moved here. It is a
difficult job.I did like your Mr
Wink and I do feel very disappointed for the 45% of Scots who voted
YES in the referendum. I think the bigwigs from Westminster scared
off the people of Scotland. It remains to be seen whether those three
useless leaders will honour their promises. One of them did honour
his promise of a referendum on Europe if he won in 2010 and is now
promising it again for 2017. The other one betrayed students over
university fees and the third one is just not a leader. I feel very
sorry for Alex Salmond and Nicola Sturgeon. Watch this space for more
antics from the Westminster bunch! My roots are probably Celtic so I
know about contrary folk!You might to click
on
http://www.breastcancer.org/community/acknowledging/world/sylviaexmouthuk
and find something interesting that I was requested to do by the
Moderators.We have had a good
thunderstorm overnight with plenty of rain and that was a big relief.Talk to you soon.
Fond thoughts.
Sylvia
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Hi TN warriors,
I am still lurking around but the site seems to not hold on to my setting for e mail notification of posts here. It has stopped working twice. My 2nd cousin was just diagnosed as well as a new friend in Munich. It seems just endless sometimes. Just was thinking of you ladies.
Susan0 -
Hello All,
I am so sorry I have been off the radar for so long, especially apologies to Jacqueline who is going through this too. I just needed to forget about the c word for a little bit.
I have had four rounds of FEC and on the last round I asked my onco about having Taxotere and he agreed, this was the registrar and he said he didn't understand why my treatment plan never included this in the first place as it usually does when there is lymph involvement. I haven't seen the consultant for a while so this will be a question for him. Glad I asked and glad I got it because in less than 24 hours after having the infusion, the tumour had shrunk by 1 cm each way (remember, mine is very large) and the boob actually looked fairly normal again. So round five was tax and the next three will be the same.
Jacqueline: Round six is on the 26th sep and whilst I am looking forward to it, I am also dreading it. It is awful isn't it? I too had the shivers and shakes, sore throat, bones aching, sweats, funny feeling in the extremities and a high temperature. Maybe I should of ended up in hospital but I want to keep the dose high for the next round and maybe the onco might reduce it if this happens? I managed to come out of it OK just by taking nurofen, watching loads of films in bed and sleeping. I do feel your pain Jacqueline, but just keep remembering that tax is the best for making sure it does not come back. I am now prepared for the next round next week and know what to expect, the symptoms seemed to last about seven days, how long did yours last for? However, it as quite funny actually, when I had the chemo on the friday, the steroids made me so hyper! I cleaned two children's bedrooms and swept the back and front! It seemed to hit me on Sunday afternoon and then began to get ill on Monday night. Hubby John is amazing. We are lucky enough that John is able to take time off work until January and so does a lot in the house and looking after me and the kids. I am very fortunate to have him. What about yourself? Have you got lots of support? It really helps. I have even had a local breast cancer support group and a post natal support group (even though I am not depressed) offer to help with cleaning and washing and ironing! Haven't needed it through.
The breast cancer support group have a guest speaker in a couple of weeks talking about reconstruction which I will attend. My breast surgeon recommended not to have recon for at least a year, I think it's because TNBC likes to comeback and this will be found easier without any tissue to mask it. I don't know if anyone else has any ideas on this? I am thinking about leaving it for two years.
This is my normal week and I am looking forward to going on a day pilgrimage to the shrine of Padre Pio on Sunday in north Wales. A well known Saint in the Catholic circle! He has been a major source of hope for me during this ordeal and whenever I feel low I think of him and feel instantly better. I am going with two of my friends, one being a BC survivor. I am also arranging a trip to Lourdes and hoping to go next May.
Thanks for letting me know that your surgery is booked for four weeks after last chemo session Jacqueline. I was hoping that I could get mine in before Christmas, but with the last being mid November this may not me possible, but I will push for it.
I haven't yet caught up with your lives yet everybody, so I will re-read all the posts and catch up with your news.
Have a great weekend all,
Marymargaret
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Hello Susan
It was so nice to see you back on the thread.
Hello Marymargarethope
I shall write more later during the weekend but was glad to know you are having Taxotere and that the tumour is shrinking.
All of those viewing and posting on the thread might like to read my personal account of my cancer journey on bc.org on the following link.
http://www.breastcancer.org/community/acknowledgin...
I did not know this thread existed but is looks interesting and I am going to explore it during the weekend.
Has anybody any news of Carolben.
Talk to you all later.
Best wishes
Sylvia xxxx
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Hello
Marymargarethope,I do
hope that everything will go well for you and that the next three
sessions of chemotherapy with docetaxel (Taxotere) will not be too
hard on you and will shrink the tumour some more. Remember that it
may not shrink the tumour completely. It certainly did not with mine.
I shall be thinking of you on September 26th when you have
round six of the chemotherapy.I do
think you are right to wait before getting into reconstruction.
Having it done at the time of surgery makes the surgery that much
longer. I think your breast surgeon is right to have recommended
waiting a year. It will give your body time to recover and for
everything to settle down. I did not have reconstruction and I would
never have considered it for myself, but I understand those who want
it.I do
hope you will feel able to catch up with the posts so that you know
what is going on.As
you know, Jacqueline has been having a tough time on chemotherapy but
has now got through four chemos.I am
thinking of both of you and hope that others will offer words of
comfort and support, as was offered to them when they were going
through it.I am
very concerned about the number of women on other threads here
posting to say they have recently been diagnosed with breast cancer
with triple negative receptors. There is definitely going on here and
would like to hear from anyone with any ideas about it.Sending
you my fond thoughts.Sylvia
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Hello
Susan,I
was sorry to read that you have two women in your life recently
diagnosed with breast cancer. Do they have triple negative receptors?
Have you any thoughts about what is causing all this? I believe the
birth control pill has some kind of connection, especially if it is
taken at a young age and continued for a long time. I also think the
western diet with growth hormones and the dreadful environment plays
a role.I
hope you are keeping well.Fond
thoughts.Sylvia
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Hello Michael,
I have just had a look at the Janette Collins Foundation web site and was amazed at how hard you must have worked to list all the research that has been going on with breast cancer with triple negative receptors. You certainly show dedication. Some of them I knew. Somehow all this research has to come together with new and less lethal treatment. Are we all going to be alive to see it?
How are things going with you? How is your stepson? I remember that you were house hunting with him.
I have been listening to all the news about how the big wigs here are now reneging on all the promises made to Scotland in their frantic effort to secure the No vote through scaremongering. Shall we have the same when it comes (if it comes) to the referendum on staying in or getting out of Europe? I must admit I think we should have a devolved English parliament and a federal system, but how do we make it fair when England has such a high (too high!) population?
It has been a quiet Sunday here in Exmouth with a definite touch of autumn.
Have you any ideas on how to make this thread as active as it used to be? I get the impression that people want to forget cancer once they have got through their treatment. Yesterday I reached 9 years and 3 months since diagnosis.
Wishing you well.
Sylvia
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Hello sam52,
I have just been browsing through the Active Topics and came across the thread High Calcium where we first met and found it is still going. I have also been through the thread you created in the Forum IDC (invasive ductal carcinoma). The thread is Hyperparathyroidism and breast cancer. The other forum is Not diagnosed with mets but concerned. I have been through everything we posted together. I have posted messages for you on both.
Please get in touch on this thread or the other two or PM me. I often wonder how you are getting on up there in London.
Thinking of you.
Love
Sylvia xxxx
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Hi Sylvia
I have just updated the website with the latest news.
I read the article about you and I was amazed to find that you had delayed seeing the doctor and had delayed treatment. For some reason I had the impression that you had been on top of the illness from the start. Janette found her lump at 10am Saturday morning and we were in Dr Hamiltons surgery at 12:30 pm. Janette did delay treatment for a few weeks whilst she had her holiday. It makes me wonder about things like destiny. There was an interesting piece on RTE a few weeks ago;. a scientist was trying to explain why things happen such as sitting around thinking about someone you haven't seen or heard of for years and then suddenly the phone rings and it is them. As far as I was concerned he didn't explain at all but he did pose a the question "is time passing us by or are we passing through time?" I think if it is the latter then we have no control over our lives.
The referendum result was interesting. I am not sure if the Scot's made the right decision but I have been thinking the England should have a referendum about leaving the UK. There is no doubt that England gets the poorest deal of any country in the union.
I am hoping my stepson will exchange contracts on his house this weekend move in a few weeks. It has dragged on for ages. We were doing a reccy around Ikea yesterday to get an idea on what he might buy.
Have you come across Association of Cancer Online Resources: ACOR.org? It seems an interesting source of material.
The weather, apart from today, has been beautiful.
Michael
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I forgot to reply to your question about the group.
I don't really know what you can do to make the group more active, I think the way people are using the internet is changing. People seem to be using resources like Whatsapp and Twitter more than groups.
Michael
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Hello
Michael,It
was so good to read your post. Yes, it is true that it took me a long
time to see my GP. I knew a lot about cancer and breast cancer in
particular, because I had read about it before my diagnosis and
through the years. My grandmother, maternal one, had had it and died
from it when I was thirteen. I remember that she had a mastectomy and
then the cancer obviously spread as she died from metastatic breast
cancer. In my mind in 2005 I was already dead. Before starting
treatment, but after being diagnosed by the consultant, I tried other
things. The consultant was referring women to the Royal Homoeopathic
Hospital in Bristol, where I saw a consultant who had been in
orthodox breast cancer treatment before and had switched. It was
there that I was put on Iscador orally. I also saw a nutritionist, a
well known one in Bristol, and it was through her that I started
taking bitter apricot kernels. I also found out about a well known
herbalist and through him I was taking astragalus powder and
wormwood. The two people in Bristol told me they could help me
through my treatment but advised me to have the orthodox treatment.
It was then that I went back for a scheduled appointment with the
orthodox breast cancer surgeon and arranged to start treatment. I
stayed with the homoeopathic consultant throughout my treatment and
stayed for some time afterwards until I felt ready to be discharged.
I kept on the Iscador throughout and also had homoeopathic medication
to help me through surgery, chemotherapy and radiotherapy and really
had no adverse effects from the orthodox treatment except for the
obvious hair loss. Who knows whether the other treatments helped or
not? I have no proof. I know that the consultant in Bristol who also
lectured at the university considered my case to be successful and
asked for permission to use it in her lecturing. All I can say is
that once I had decided on the orthodox treatment and had gone
through the other options I threw myself into my treatment and did
everything to help myself. I think I got through without being very
ill because I was healthy at the start and had never been ill.Throughout
this thread where I have related this before, I always tell people
not to delay and to take command of their treatment. If I have to do
this journey again I shall not delay! It is too risky.You
and Janette certainly did the right thing by going to the doctor
without delay.I
was so interested, Michael, in what you said about time passing us by
or us passing through time. We have to remember that time is man made
and that without clocks we would have no concept of it except for
light and darkness. It is interesting because without man made time
we would have no concept of our age in number terms, so we would not
have a chronological age but our body would still change to reach
what we call old age. Remember the Native Indians in North America
used to talk about many moons ago. I think time is not passing us by
and I do not think we are passing through time. We are just changing
appearance as the light and darkness come and go. It would be nice if
we could age much more slowly and live a lot longer. It would be even
more interesting if we could go backwards and forwards in time. This
is a very interesting subject. I often think about all the people I
have known throughout my life and wonder what has happened to them,
but sadly, so far no one has popped up on the telephone! I am not
sure if we have any control over our lives at all. I often wonder,
since I was told my breast cancer started when I came to Devon in
2002, whether I would have had it if I had not come here. I am doing
this all the time and I am fascinated by the different paths we take
and how they affect our lives. Raymond calls me the 'what if?' lady.I
can tell you one thing that often freaks me out. As a child I was
very close to a couple that had a shop near where I grew up in
London. They had no children and often took me out to a show or
something special like the Festival of Britain. I lost touch with
them but the lady came back into my life years later after the death
of her husband. Raymond and I met up with her on a trip back from
Canada and then visited her in Cornwall where she had retired. She is
dead now, but on one visit we were talking about my grandmother and
how she had died of breast cancer. The lady said that often the
cancer skipped a generation and then affected the next! My mother and
her sister did not have cancer but I ended up with it. I often think
about that and feel almost that it was predestined for me to have it.
How crazy can that be? I have three female cousins all free of breast
cancer but they are the children of my mother's brothers. Her sister
had no daughters so I am the only female going from that maternal
grandmother, through her children an on to her grandchildren. What do
you think of that?I am
going to have to stop now but I shall post some ore tomorrow, as I
have been following the referendum for Scottish independence with
great interest.Best
wishes.Sylvia
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Hello
Michael,I am
posting this while waiting for a contractor to arrive to do some
pressure washing on the courtyards, but the weather does not look
very promising here.I
think the referendum resulting in No to Scottish independence was
largely the result of the scaremongering from the three party
leaders, a former prime minister and a former chancellor. I think
they frightened the Scots and probably those who could not quite make
up their mind. I felt very sorry for Alex Salmond as he knocks socks
off the rest of the leaders. I really believe in a more equal society
and think in Scotland they probably have a better health service and
better education at all levels.I
think it is awful that already the promises for more devolution for
Scotland are being broken.At
the same time I do agree that something has to be done about the way
things are being run in England and think that since Wales, Scotland
and Northern Ireland have all been devolved, that we should have a
devolved English government for England. This would mean we really
need a federal system. I do not think it is going to happen. It seems
there is talk of decentralisation but in the form of more power and
devolution to the regions. The problem is that we have such unequal
populations with 60 million plus in England and only about 10 million
in all the other three. England is overpopulated and it makes for
less quality of life. The federal system in Canada seems to work with
ten or so provinces and with the bulk of the population in Ontario.
We lived in Canada when the enormous province of Quebec was
campaigning for separation. They have had two referenda but have so
far not succeeded in obtaining separation, but they got very close.Do
not even get me started on the House of Lords and all the archaic
deferential ceremonial nonsense that goes on in the Houses of
Parliament at Westminster. I have watched the proceedings in the
modern business-like settings of the devolved parliaments and much
prefer it.I do
hope your stepson manages to exchange and complete on his house. All
that is another nightmare that we go through. When we were first
setting up home we used to buy a lot in Ikea. Here in Devon Ikea
wants to move into Exeter but so far there has been resistance to it.
We find Devon rather slow when it comes to modernising. There are so
many shops that do not come to Exmouth, even though, except for
Plymouth, we are the largest town in Devon.I
have not come across ACOR.org but now that you have brought it to my
attention I shall certainly have a look.You
might be interested in two other threads that I look at, which are
all about the connection between parathyroid disease and breast
cancer. They are as follows.https://community.breastcancer.org/forum/96/topic/784308
https://community.breastcancer.org/forum/105/topic/737868
That
is all for now.Fond
thoughts.Sylvia
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Hello
again Michael,I
saw that you posted again. It is really difficult to come up with
ideas to get the group as active as it has been over four years. I
suppose one thing would be to start the process of information all
over again as reading some threads people do not always appear as
informed as we might think. I suppose unless you get diagnosed with
cancer or are closely involved with someone who has been diagnosed
with it, it does not become a big part of your life. I do wonder also
how much information about cancer, people unaffected take in, even
though there is information in the media.I
was interested in what you said about you think the way people are
using the internet is changing. I tend to Google information because
I am very inquisitive and have always had a thirst for knowledge but
I am very wary about how reliable some of the information is. I am
not a natural computer user and tend to be a book reader. When I was
diagnosed in 2005 all my information came from books. I am not on
Facebook but get the impression that there are different TNBC groups
on it, but how in depth is it? I like the idea of the moderators on
this forum. As for Twitter, I am not on that either and wonder how
much you can really say in 144 characters. I do not know anything
about Whatsapp. What exactly is this? I am not into smartphones and
do wonder about mobile phones and cancer. Only time will tell if
mobile phones are a cause of cancer. I think groups are a good idea
because we get to talk to people from all around the world. Although
I started the thread for people in the UK I have always made it clear
that anyone can post and we have had people from all around the world
and some have left a lasting impression on me.I do
notice on the TNBC forum that lots of threads are started but vanish
very quickly.I
hope you are keeping well.Best
wishes.Sylvia
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Hello Michael,
Just to let you know that I have just had a look at ACOR.org. It is very interesting and covers an enormous amount. Of course, I went to Breast Cancer and the section about Advanced Treatment. I do not know whether to join as I already find it difficult to get enough time for myself. Have you joined?
Sylvia.
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Hello maryna8,
I was just wondering how you are getting and whether you are feeling any better.
I saw my GP yesterday about the osteoarthritis in my toe and whether there was a connection between it and the chemo induced neuropathy in my feet. She said she did not think there was. She also ruled out gout and pseudo gout, I was interested to hear her say that you could get gout flare ups during chemo and that sometimes anti-gout medication was given with chemo.
Have you heard about any of this?
Thinking of you.
Sylvia xxxx
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Hello Sylvia!
I had my slightly-over-two month appt. with oncologist today, she said things looked well. She is ordering an MRI for my lower back, since pain started there about a month ago. I told her I have had MRI on that area in the past and it was arthritis, but she said we must stay on top of these things. Now I will not see her again for a few months, unless something shows up.
My various pains are still with me, but not to the degree they were. I think much of the orthopedic pain that I do have was amplified by nerve pain while the chemo was still roaming around my body. The doc said the pain that remains should be orthopedic, except of course for my feet which continue to have the neuropathy.
I do believe that arthritis can be aggravated by chemo, it seems that has happened to me. All these problems I have probably were there before but not enough to bother me. And hopefully my lower back will continue to only present as arthritis, and not the big C! I have not heard about gout medicine being given during chemo. I always thought gout was aggravated by rich food and drink; I don't think your diet would follow that at all! I guess we are lucky with the degree of our neuropathy, I know a man who has it so bad it keeps him from sleeping at night, he has to jump up and walk around for a while. And he is taking Neurontin too.
Michael, you sound like the most supportive of husbands, your wife is very lucky to have such a helpmate. Thanks for posting all the info
FYI, I am on Facebook, but not Twitter. All I do on Facebook is look at pics and videos of relative"s children, it's a good way to keep up with them as they grow up. But I don't think either medium lends itself to any depth, everything is very brief.
I need to go for now,
Talk to you soon,
Best wishes!
Mary (maryna8).
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Hi Sylvia
It was interesting reading about the complimentary therapies you used, do you still continue with any of them? I wish I had known about them when Janette was ill.
As far as I can tell, there is no history of cancer in Janette's family apart from her great aunt who died of Breast cancer, so if I remember the details correctly that would fit with the skipping a generation theory. I cannot remember if that great aunt was called Harriett. Janette knew nothing of these relations until 2008 when she started studying her family tree but she told me that when she was pregnant with her daughter she had an overwhelming feeling that she had to be called Harriet.
I haven't joined acor and I don't think you need to join to use the resources. Login asks for a listserv password. Listserv was a forum control manager from the nineties and I am not even sure it is possible to get a password. I will check later.
It is looking a lot like rain her so I had better walk Winnie otherwise the two days of house cleaning will have been a waste of time
Michael
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hello to Sylvia and every one on this thread
I survived the wedding and now I am totally exhausted - both daughters married within 6 weeks of each other!!! My house is a disaster, but I am taking a few days to catch up on sleep before even attempting to clean. So grateful that. I am feeling so well and that I was able to appreciate and enjoy every moment of the wedding day of my youngest child . She was a beautiful bride and I cried a lot - very emotional!!
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I would have to say that my diet has been less than stellar this past couple of months simply because I found myself eating more than usual with all the extra stress and activities. However, I kept up with all of my supplements and I really do believe they make a huge difference. Sadly I lost a dear friend just a few days ago - she had breast cancer (TN) ands it metastasised to her brain - the MO gave her less a year , and she was gone in 2 weeks - yet another lesson for me to totally embrace each and every day and LIVE life fully!
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