Calling all triple negative breast cancer patients in the UK
Comments
-
Hi Mary
Thanks for your kind words.
I can understand how you feel that you have lost your sense of purpose. A few months before Janette's relapse she suddenly decided that she wanted a dog, which baffled me as Janette had never been an animal lover and I had. So we got a dog and now she keeps me busy, in fact she has me wrapped around her little finger.
I hope that you have a peaceful Easter.
Michael
0 -
Hi Sylvia,
My last post finished abruptly because I had a lift to the centre.
My sister lives in Billericay and her party was in De Rougemont Manor? Also we had a fabulous champagne afternoon tea at I think Mary Thorpe Hotel in Brentwood. I was still in hospital until 6 45 on the day of her party and arrived 2 hours late. I sat for all of it as I think that I was still in shock from being whisked off in an ambulance.
Last Saturday a few of us went to Dublin for a one day Seminar on Lymphodema. A consultant from Derby was the main speaker.It seems to be an area that has little attention paid to it.
I had read about the test to determine whether chemo is appropriate.As you said they have been doing this in America. I only know of one person who has taken it and it was sent away to America. She had no chemo but sadly now has small reoccurrence in the bone. If I had to decide I do not know if I would be tested.
I have been following some of the stuff about the election. I didn't watch the leaders debate.I was a staunch Labour supporter having grown up whilst Dad was Barbara Castles agent.He then went on to work for the Equality Commission. I loved the buzz around election time and was a runner between the polling station and the ward office. When I was a teenager I used to canvass too. Now I cannot see the differences between the parties. It is so sad and disgraceful to see what is happening to the health services and education. How hard people fought for them...... Aneurin Bevan must be spinning in his grave!
It is the same here and I now vote for the person as I cannot differentiate between the parties and I feel that I should use my vote.
Oskar may be coming next week so that Kerry can get some rest before the baby arrives. It will be a boy. They decided to find out ,I think mainly because of the two mis carriages.
The weather here is not too good. Disappointing as Easter is one of my favourite times. Probably because of the chocolate! but also because there is a sense of life and hope.
Thinking of all who are having treatment and to those who are finishing theirs take all the support or help that is offered.
X X X
0 -
Hi linali
Janette and I used to live in the apartments across the road from the Mary Green Manor hotel in Brentwood. It is one of the top hotels in the area. I am sorry that you had to go to hospital, at least it was Basildon and not Queens in Romford which has a shocking reputation.
I hope you are having a relaxing Easter.
Michael
0 -
Hello everyone,
I just wanted to wish all of you a happy Easter weekend. This morning at 9 am we have some rare sunshine in Exmouth, but I do not know if it is going to last.
I have just read the posts from Michael, Lindsay and Hanieh and I shall be answering later on.
Thank you to all of you viewing and posting.
Special hellos to sam52, InspiredbyDolce, Carolben, Tom, adagio, Gill and all of you who contribute to the thread.
Best wishes.
Sylvia
0 -
Hi Michael,
Thanks for that. My sister had her 40th at Mary green Manor but opted for the De rougemont this time.The whole afternoon tea experience was so enjoyable and special because I was with my sisters.
Yes ,I shall spend Easter getting ready for the arrival of my new grandchild.I was going through treatment when Oskar was born. Age is creeping up on me and energy levels not as they used to be!
I have been wondering recently whether the percentage of TNBC is higher in Clare than other places.I also think that the incidences of cancers are quite high too. The population of Clare is approx. 120,000. Breast cancer is the cancer that the higher number of women at my support centre have been diagnosed with.There are 5 of us now with TNBC. Perhaps that tallies with the 10% figures.
I hope that you have a peaceful Easter too and that the weather improves so that you and your dog get out and about.
0 -
Hi HanTagh and can I say what a beautiful couple you make! Was the photo taken in your garden? Where do you live?
Sue xx
0 -
Hi friends
I live in an apartment in Tehran capital of Iran. No actually we were invited to my husband's uncle's garden in a city near Tehran called Karaj. It was lovely and the weather beautiful. We enjoyed dancing and playing lots of games.
Now I try to enjoy spring weather by taking a one- and- half hour walk in the park near our apartment every morning after taking my daughter to school. The spring view of the park with lots of flowers and blossoming trees and the birds songs are really elevating. After every day walk I try to meditate for some minutes while picturing all the good days that are awaiting me and pray for all that are affected by this and other diseases especially my friends here. I sometimes wish you could take a trip and were here to enjoy the beautiful spring sunshine together.
Lots of love
Hanieh
0 -
Hello everyone,
These are the first blooms of spring in my apartment complex. I do a lot of the work and planning of the grounds.
Enjoy.
Sylvia
0 -
Hello Michael,
Thank you for your post. I think you are right about the test being to measure the likelihood of recurrence and that if the likelihood is low then you do not have to have chemotherapy. It is a bit risky and I think that, if I were in that position, I would still opt for chemotherapy as I do not think anyone can say for sure you will not have a recurrence. When I was first diagnosed the breast cancer surgeon said I should not have breast cancer but the fact was I did have it.
I do wonder also about the position of an oncologist who has told a patient that she does not really need chemotherapy because of low risk, and then the patient has it come back. Would it be a case for suing?
I think you are right about protocols being standard everywhere, rather than personal treatment.
Last week on the radio there was a brief mention about a vaccine in the US that appeared to work for skin cancer.
By the way, you mentioned a link but forgot to put it in.
Today, Easter Sunday, it is mild, dry and sunny at the moment. The rainy weather did not come but dare I say we do need some! Raymond and I have not yet discarded our winter clothes. We stick to the old saying about "cast ne'er a clout till May is out".
I was very interested in what you and linali were posting about Essex. We really liked Billericay which was about six miles from where we lived. We went there very often and loved to walk the High Street. We were last there in September 2011 and met up with friends and relatives in the Wetherspoon's pub, the Blue Boar, for a meal. No doubt a lot of the shops have changed since then. We also used to go to Waitrose, which had a nice little snack bar.
We used to love the Essex countryside and the towns of Brentwood and Chelmsford. We seemed to get out more in Essex than we do here.
We do not really believe in all this mocking that goes on about Essex Man and Essex Woman. We were always impressed about the hard work that Basildon Council put in for that part of Essex. However, when we listened to Joey Essex being interviewed about his conversation with Nick Clegg, we could see where the myth of Essex Man could come from. We do not know whether he was being serious or not!
Have you watched the two programmes on the General Election? One was with Jeremy Paxman, during which he fired questions separately at Ed Milliband and David Cameron and then again separately the two faced questions from an audience. We were not very impressed with any of it. The other one had seven parties answering questions on four topics from an audience. It was OK but the three women, Nicola Sturgeon, Leanne Wood and Natalie Bennett were easily the best. Cameron and Miliband were average. We thought it was out of order that there was no one from Northern Ireland, given that they have 18 MPs.
Election fatigue has already set in for us, because it is all very repetitious and full of dirty tricks.
That is about all for now. Enjoy Sunday and Monday. Did your dog get an Easter treat?
Fond thoughts.
Sylvia.
0 -
Hello Lindsay,
It sounds as though you had a good time for your sister's party, despite having been in hospital on the day of it. I was glad to know that you made it there, but can understand you were in shock from being whisked off in an ambulance. That is certainly a day you will never forget.
I was interested to know that you had been to Dublin for a one day seminar on lymphoedema. It is certainly an area that should have a lot of attention as I understand it is quite a common side effect of surgery. I know that at my hospital, the RD&E in Exeter, they had a lymphoedema clinic and specialist nurses. I went there as a precaution after my mastectomy as I had a little swelling on the upper right arm and a bit of puffiness in the fingers on the right hand. I was quite interested in what they do at these clinics. The nurse measured the diameter of various parts of my right arm. She said it was only very slightly swollen and was nothing to worry about. She told me I could wear a sleeve for a while if I wanted. I tried it on, hated the feeling, said I did not want it and I would let my arm heal naturally. I never had any problems after that. I told my GP at the time about it and he said I was right to reject it out of hand and that he did not believe in these sleeves.
As I have said many times on this thread, I would always opt for a mastectomy, chemotherapy and radiotherapy, whatever my options, but that is my own personal view.
I was interested to know that you have been following some of the programmes about our General Election. I do remember that you told me in the past about your dad and how he was the agent to Barbara Castle. I do not think there has been any woman like Barbara Castle since her days. I do think that the SNP has a winner in Nicola Sturgeon. She is a very strong and determined woman and seems utterly sincere. I also think Leanne Wood is committed to Wales and is also very strong. Natalie Bennett is determined as well, but in the end we have Ed Miliband and David Cameron. I think that we need rid of David Cameron or we are going to lose our NHS. The Conservatives hate anything that is publicly owned. As for Labour, it has become too Establishment and the rot set in under Tony Blair. I think we are probably going to end up with another coalition.
I agree that it is sad and disgraceful about what is happening to the health service and education. What a mess they are both in. As you say, Aneurin Bevan must be spinning in his grave. Everything that was achieved in 1945 is systematically being undone. It is a bit much that the Conservatives, who think anything publicly owned is bad, and yet they are public servants picking up fat salaries from people's taxes!
I do hope all will go well with the birth of the baby.
Take care and keep in touch.
Fond thoughts.
Sylvia xxxx
0 -
Hi Sylvia
The pictures are wonderful. I really enjoyed them. As I have seen how hard my father works in his garden to grow beautiful flowers I know how much effort you have put on growing so nice flowers. Actually your neighbours are so lucky to have you there. Thanks a lot posting these pictures.
0 -
This is a picture of me and my father's villa garden last year a month before my diagnosis.
0 -
Hi Sylvia
I am sorry that I forgot the link, here it is: http://www.genomichealth.com/
I haven't watched any of the election debates. I can't be bothered to listen to the re churning of propaganda. I was listening to a piece on RTE this morning. They were talking about the debates and about how the parties have armies of people ready to post put downs or support to social media and actual media. I recall reading Matthew Parris's biography, 10 years ago, where he writes that essentially politicians are actors and parliament their stage. They are not really there for the good of the nation but for their own place in history. Thank goodness the NI parties were not represented in the debates because they would have just banged on about their own narrow agenda.
I have eaten many meals in the Blue Boar in Billericay, mainly breakfast as I used to take the early morning flight to Southend and then stop off on the way to Brentwood. There is also a very good restaurant called Wildwood.
I don't think an oncologist would be open to legal action for their advice because ultimately it is the patients choice, unless, the options are not made clear.
Selfishly I am looking forward to the end of the bank holiday weekend as I have a bad case of cabin fever. The Easter holidays are a bit different here. Good Friday is a normal working day and Tuesday is a holiday.
Michael
0 -
Hi linali
You make an interesting point about the incidence of cancer in Clare. I have often wondered about NI, which seems to have a very high incidence, especially the North West. Of course the area was badly affected by fallout from Chernobyl and it is only the last couple of years that use of milk and lamb produced in the area has been permitted. Perhaps Clare was equally badly affected.
Michael
0 -
Hello everyone,
Thank you to those who have posted recently. I shall reply later on today when I have more time. In the meanwhile, here are two more photos from our grounds. The blue flowered shrub has deep blue flowers, but these do not show very well in the photo.
Talk later.
Sylvia
0 -
Hello HanTagh (Hanieh),
I was so glad to know that you enjoyed the pictures and that is a lovely picture of you in your father's villa garden.
I find gardening very therapeutic and I do love watching all the plants come back to life after winter. At first there seems to be an abundance of yellow with all the daffodil bulbs and the forsythia shrubs and then the reds and pinks come with the big flowers of the camellia shrubs. The small flowers in the pictures are primulas and my husband, Raymond, and I planted a lot of them a couple of weeks ago to give colour while we wait for the summer flowers.
Today the weather is lovely, sunny and mild, and because it is a public holiday for Easter there are lots of people on the seafront, children playing on the beach and long queues for ice cream.
Tomorrow reality will strike as everyone goes back to work.
Sending you best wishes.
Sylvia xxxx
0 -
Hello Michael,
I can understand why you have not watched any of the election debates, as the candidates do churn out the same old stuff. I was very interested in what you said about the piece you had been listening to yesterday. I think it is really awful that the parties have armies of people ready to post either supporting or opposing what is said on social media and actual media. What a farce that makes of everything. We, the people, are being taken for a ride and nothing seems to be natural, authentic or spontaneous. Why we cannot have legally binding manifestos sent to us by each of the parties and that is an end to it. We do not need all these weeks of electioneering. Do you believe that we shall ever have a true democracy anywhere?
I do believe you are right about politicians being actors. I remember studying one candidate very carefully when I lived in Canada and he was definitely posing for the audience. He was also a solicitor, and I think a lot of acting goes on there as well. Perhaps we need politicians who work for the good of the country as an unpaid social duty on sabbatical from their work. I have been pretty disgusted with all the scandal over expenses.
I was most interested to know that you have eaten many meals in the Blue Boar in Billericay. What a small world it is. Before being the Blue Boar it was the Coop. Do you remember that? It was the Coop when we first settled in Essex when we came back from Canada. During our time in Essex we saw many changes along the High Street. We used to go to a nice little restaurant on the same side as the Blue Boar. It served home made meals. I think it was taken over by a pizza place and do not know what it is now. My cousin also talks about a relatively new restaurant, I think Chinese, where you are not allowed to leave any food. I think he said it was next to the Blue Boar. We were in Essex from November 1993 until January 2002. Were you and Janette in Brentwood at that time?
I do not know the restaurant called Wildwood. I do not think it was there when we were there.
I agree that ultimately when it comes to cancer treatment, we all make our own choices.
I was sorry to read that you will be glad to see the end of the Bank Holiday as you are suffering from cabin fever. I understand that such times can be difficult. We get like that during the Christmas shut down and especially Christmas Day when everything is closed. We were told that most shops would be shut for Easter Sunday but we discovered lots of places were open, except for our local supermarket.
It has been mad here today in Exmouth with crowds on the seafront, hungry for sun (and ice cream!). We have had a quiet day.
I am going to hav a look at your link now.
Sending you best wishes.
Sylvia.
0 -
Hello Michael,
I just wanted to say thank you for posting that very useful and very interesting link. I think everybody should read up about the oncotype DX test. I found reading the case histories of the list of past patients truly informative.
Best wishes,
Sylvia.
0 -
Hi all
Sorry its been so long, things have been crazy!
Just to let everyone know, baby was born on the 14th March, a very healthy baby boy. He's doing very well, keeping me up at night, but of course thats how it should be.
My wife is now back on chemo, 8 more weeks of taxol to go. We are counting the days.
Lots of new research out there as well. For my own part one of my students has indentified a fragment of a protein that can inhibit migration of certain cancer cells. Some interesting new stats on triple neagtive out there as well.
As always love to you. I hope everyone is getting on well!
Tom
xxx
0 -
Ah Tom a huge congratulations to you and your family xx what is his name? Wishing your wife as comfortable as possible journey through her chemo xx
0 -
Hello Tom,
It is so good to see you back on the thread and with such good news about the birth of your baby boy. I was so glad to know that the new baby is healthy and doing well. Be sure to let us know what his name is.
I do hope all will go well with your wife as she gets through the next eight weeks. Keep looking forward and they will soon go by.
Thank you for letting us know there is lots of new research out there. I was very interested to know that one of your students has identified a fragment of a protein that can inhibit migration of certain cancer cells. Please keep us posted. Let us know about the statistics on triple negative.
Look after yourself and your family.
Fond thoughts.
Sylvia
0 -
Congratulations, Tom, to you and your wife. Wonderful news about your baby boy.
We are also getting near my daughters due date and she has been told that she is having a boy.
I hope that the chemo goes well.
0 -
Dear Michael
Janette must have known you would need a friend after she left, thus your puppy. I have an old cat, she always slept next to my husband's recliner, in front of his oxygen machine. I still turn on the oxygen machine at night and there she passes her nights.
I had the radio on yesterday and heard just a snippet in passing about a new drug for metastastic breast cancer. Perhaps will hear more today, not sure if it is just going into testing or where the progress is or what it is called.
I had a very nice Easter, and was invited out for Friday night, Saturday evening and Sunday brunch. I am fortunate to have caring family and friends that like to cook! I have gained most of the weight back that I lost during the last year.
Best wishes,
Mary
0 -
Tom,
Congratulations on the arrival of your new son, how wonderful for you all!
I hope your wife has a very successful trip through chemo, it is so wonderful she has you to help her through all this. Both the good and the not-so-good.
Best wishes!
Mary
0 -
Hi, Sylvia,
I hope you had a very nice Easter, I was invited out for Friday, and then Saturday and Sunday too. That was very nice, keeping busy seems to be the best thing. I have famly coming to visit from Texas Friday, that will be good.
I am getting nervous about next week. Monday I have an MRI and CT scan on my lower back, to look at the spot they have looked at twice before. Thursday I will see my oncologist for check-up, I assume by then I will already have heard what the test results are. I do have a lot of back pain with activity, but some of it is muscle pain. And I do have a lot of arthritis in my back and have had lower back pain for many years. It is worse now; yesterday I tried to get quite a few things done, and last night had to sit quietly and try to soothe all the aching parts. So please send positive thoughts my way next week,
Thanks for posting pictures of your flower beds. So beautiful and cheering! It is such a wonderful time of year.
I am interested and entertained to read your stories about political happenings. I guess politicians are the same everywhere. Here they are all gearing up for the next big election in 2016. Sometimes it seems all they do after they are elected is figure out how they can be elected again!
Be well, talk soon
Mary
0 -
Tom
Congratulations on the arrival of your baby boy.
Best wishes
Michael
0 -
Good morning,
I have just been talking to my sister, Trina, who decided to do an online course to keep her mind stimulated after she took redundancy from her job as a social worker. She chose Inside Cancer probably because as well as me she has had a few friends diagnosed in the past couple of years.
The course seems quite technical and she has to do assignments using accredited research. She has focused on Tnbc and has come across some recent research done in North Carolina. It was looking into the effect of rosehip on cancer cells.
Maybe you have come across this already. I apologise for not putting up a link but I am using a tablet and haven't quite got the hang of it.
It is also used for arthritis.
Sylvia, the pictures of the flowers are so cheerful and bright.
Is that a magnolia? if so I envy your fabulous blooms. Mine is still only in bud..... I suppose we are on a more northern latitude and are quite exposed to the Atlantic winds.
We have had a productive day today and taken a packed car to the recycling centre. We pay for recycling apart from glass or electrical appliances which we pay a special recycling tax on.
We are trying to have a clear out to prepare for the new baby coming to stay. I have held on to clothes, some for 20 years and I'm afraid that it is only in my imagination that they will fit me again. I would love to know how to up cycle clothes.
Tomorrow I am going to my GP for my blood results and to have a mole checked out. After that we must tackle the attic. Unfortunately there's no chance of finding any hidden treasures.
Hope that you are enjoying the fine weather and have time to relax.
0 -
Hi Mary,
It was good to hear that you had a busy and enjoyable Easter. You definitely deserve to be taken care of like that.
I mentioned in my post to Sylvia that there are some studies about rosehip. Some people seem to find it beneficial for arthritis too.
I am know that we will all be thinking of you and sending wishes to you for a positive outcome.
0 -
Hello maryna8 (Mary),
Thank you for your post. We just spent Easter weekend very quietly. Exmouth gets very mad this time of year with all the tourists coming here and all the children on holiday from school. Fortunately our road is very quiet, although it is with walking distance of the seafront and the town. I was glad to know that you were invited out for every day of the holiday weekend. I know it can be very hard for people on their own and with no family at this time. I hope you have a good time on Friday with your family visiting from Texas.
I can understand your feeling nervous about Monday April 13th when you have an MRI and a CT scan on your back to look at that spot. I do hope all will be fine. Having two scans in one day is a lot to deal with.
I do hope that all will be fine with your check up with your oncologist and that before you have that appointment you will have good news from the scans.
The medical establishment seems to think there is not much that can be done with the pain from arthritis except to take painkillers and/or pain relieving gels or cream. What I would like to know is what causes all this arthritis and how it can be prevented, but prevention does not seem to arouse much interest with doctors.
I have read that eating green lipped mussels are supposed to be good for arthritic pains. They are rather large mussels bought on open shells. You do not need to eat many, as they are rather filling. There is also a product known as Pernaton which is made from these mussels, which is supposed to be a good pain reliever. I have seen it advertised in ordinary pharmacies and natural food stores. Have you heard of it?
Have you any thoughts about what causes arthritis? Doctors seem to dismiss it as part of ageing.
We shall all be thinking of you on Monday and Thursday and sending positive thoughts across the ocean to you. Be sure to let us know how you get on.
I was glad to know you enjoyed the pictures of the flowerbeds. Our apartment complex is situated on quite large grounds, so I walk round regularly and watch nature come back to life. So far it is the spring plants that are in full bloom, azaleas, camellias, skimmias and of course the magnolia trees. Exmouth is known for its magnolias and there is an Exmouth magnolia. We also have the Magnolia Centre which is the heart of shopping here in Exmouth.
I was glad to know that you have been reading our stories about political happenings here in England. I have never known such sniping and bad behaviour in a long time. It is all negative campaigning, lots of promises and rich politicians trying to tell us they are just ordinary people like the rest of us! We have seen them photographed and interviewed in their kitchens and they are using their wives, even their children to try to garner votes. It has all been over the top and we still have four weeks to go before the General Election on Thursday May 7th. We shall also be voting for local councillors and I think that in Exmouth they are useless. We have had the same old people year in year out. It is true that politicians are in it for themselves and have no sense of public duty. Watch this space!
Take care, Mary and keep in touch.
Fond thoughts.
Sylvia xxxx
0 -
Hello linali (Lindsay),
I was most interested to read that your sister, Trina, is doing an on-line course entitled Inside Cancer. I am sure this will keep her mind very stimulated and I shall be very interested to find out if she learns anything new. Please keep us posted.
You said that the course seems quite technical so I was wondering whom it is meant for. Do you think it is meant for medical people? What kind of social work did your sister do?
I do remember reading about rosehip and cancer some time ago, so I shall be very interested in any information you can post. Rosehip is of course vitamin C and I seem to remember that alternative doctors have theories about using high dose vitamin C to treat cancer patients. Of course Linus Pauling did a lot of work on vitamin C and was a great believer in its usefulness.
I have read about rosehip and its use to help with arthritis. I do not know how effective it is.
I was glad to know you enjoyed the pictures of the flowers. Yes, there was a magnolia in the pictures. It is called a star magnolia and there is a small one at the front of our complex. You will see from my post to Mary that Exmouth is known for its magnolias. I find it intriguing that the blooms come before any leaves. It blooms again in August.
I was interested in what you said about your productive day. I was especially interested in what you said about you have pay for most of your recycling. Here in England we have a recycling collection every week for kitchen waste (fruit and veg peelings etc.), papers, plastic bottles, glass and tins. We have special recycling boxes to put all this in. For non-recyclables we have wheelie bins and a collection every two weeks. We also have a big recycling centre where we can get lots of other things recycled, especially cardboard, garden waste, electrical appliances, furniture etc. It is a massive place and very busy. We do not have to pay but it is paid for out of the council taxes that we pay based on the value of our property.
I am afraid that in England people do not seem to take any pride in their neighbourhoods or environment. They are very prone to throwing litter on the streets and are very lax about picking up after their dogs. They also dump almost anything anywhere they can find. It is quite shocking. I have no patience with litterbugs.
I was interested to know you are having a clear out. It is so easy to accumulate belongings. Raymond and I are great minimalists and find it is easier to live a simple and uncluttered life. We do not hoard anything. I cannot believe some of the programmes on the television about hoarders with their homes full of junk. I have watched ones where there is a psychologist who visits their homes and helps them to understand why they do it and then helps them with de-cluttering. At the moment there is a series about Collectorholics which I find unbelievable.
I do hope you have had good news today about a mole and your blood results.
I do hope you make good progress with sorting out your attic.
It is a nice spring day today, so everyone will be going mad with the sun. Yesterday I saw quite a few women with badly burned skin when I was in the local supermarket. Why do they do it?
Wishing you all the very best.
Fond thoughts.
Sylvia xxxx
0
