Calling all triple negative breast cancer patients in the UK
Comments
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Good afternoon Sylvia
Chemo brain for me was walking into a room and wondering why I had gone there and it would take a good deal of thinking before I would remember. I also lost the ability to concentrate, hence my decision to go off and do a degree.
Michael
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Hi Sylvia, thanks for the amazing photos.
I find my images on the internet.
Having a quiet day, family were over for a week.
Chemo brain - felt slightly tipsy and unsteady but not forgetful. Would not drive.
Good weekend to all.
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Hello BernieEllen
I was so glad that you liked the photographs. They really struck me as beautiful when I received them. Have you any ideas on what else we could put on the thread as a means of relaxation, comfort and a break from this dreaded breast cancer?Thank you for letting me know that you find the beautiful designs on the internet.
I hope you had a good time with your family. It is hard work when you have family visiting, so I can understand that you are having a quiet weekend.
Do you have any plans for the rest of the summer holidays, which are fast disappearing. The schools go back here on September 4th.
I have not done a lot this weekend. I tried to do some gardening, but the humid heat got to me. Exmouth town and seafront is the busiest I have ever seen it, but it is all quiet where I live, even though it is a short walk to the sea.
I think what made me happy this week was to see that Maria_Malta had popped in and to know that she was fine.
I was interested in what you said about chemo brain. It obviously affects people differently and is probably different during treatment to after treatment. I think probably the long lasting effect of chemo is not having as much energy as before. You might like to read the following link about someone's personal experience with chemo brain.
http://youngadultcancer.ca/community/articles_archive/chemo_brain?gclid=CMqCtpCW9LECFQ0htAodj3IAJQ
I hope you have a good week.
Best wishes
Sylvia xxx0 -
Hello Michael
Thank you for explaining your personal experience of chemo brain. I think you did the right thing going off and doing a degree. Studying really concentrates the mind. What did you study and did you enjoy it?I do think it is understandable to be a bit forgetful and find it difficult to concentrate, because all you can think about is that you have cancer and the treatment keeps you very busy. How are you now?
I just saw on another thread that someone had posted to say that she was a sixteen year survivor of lymphoma cancer and had just been diagnosed with TNBC. What an awful shock that must have been.
The saddest post I saw today was from a sister who had been posting sometime ago on behalf of her sister with breast cancer, but had stopped for fear of frightening the sister too much. She had just posted to say that her sister had died ten days ago. It is hard to know what to say in such circumstances.
Thank you for your interesting posts. It is good to ask members questions like you do.
Wishing you a good week.
Best wishes
Sylvia0 -
Getting ready for Round 2 this week . . Oncologist is switching me to prednisone instead of dexamethasone . . 120 mg tomorrow - - OMG I will be climbing the walls - do any of you have a house I could clean ? ha ha. I am anxious.
Here are the short hair before . . the buzzed head . . . and the wig . . . everyone says the wig looks real - but it does not feel real YET - I will get used to it . . .
[IMG]http://i46.tinypic.com/2ut1etg.jpg[/IMG]
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Good evening Sylvia
I forgot that you had asked about Janette's shop. She had planned to close it last summer but I persuaded her to carry on until Christmas, which of course didn't happen. Where we live (Killyleagh) is a bit off the beaten track and in order to be successful you have to give customers a good reason to come here, so Janette decided to sell brands of shoes that you couldn't get anywhere else in Ireland. It was reasonably successful but took a lot of time and was never going to provide a living. Janette would sit in the shop for days and see no one and then in one day she would sell a couple of thousand pounds worth of shoes.
The lady with lymphoma who now has breast cancer is fairly common, I think. On a support group I belong to, there was an elderly man who whilst having lymphoma had four other cancers. His signature line said "still dancing" however I think he has since died.
My chemo brain has been overtaken by what I imagine is post traumatic stress syndrom. I have trouble concentrating and find it really difficult making decisions etc.
I studied Business Administration, mainly because I already had a HNC in Business studies.
Michael
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Hello FernMF
I do hope everything will go well for round two of your chemotherapy.Thank you for the photographs.
You look lovely in the photograph with your own hair and lovely with your wig on. It really suits you and you can wear it with confidence.
I do hope you will manage to get some sleep. I have no experience with steroids really, so I cannot imagine what this hyperactivity is like. I had a few dexamethasone tablets but they did not seem to have any effect on me.
Take care and keep us informed about what is happening. Can we expect postings from you in the middle of the night?!
Best wishes.
Sylvia xx0 -
Hello Michael
I was interested in what you had to say about Janette's shop. Her idea sounded very good, but it must have taken a lot of energy to get that all going. I wonder what went on in her mind in that shop on all those days when she saw no one.I was interested to know that it is fairly common for a woman surviving lymphoma to develop breast cancer. I think this is because cancer is systemic and that once you have had it in your system, there is no knowing where it is going to pop up.
I am not surprised that you are having trouble concentrating and making decisions. You have had a really hard time of it and are still going through the process of grieving. It will take a lot of time for you to get over Janette's death and try somehow to go forward with your own life. You have been through cancer and you have lost the woman that you found after such a long time, and you lost her because of her cancer. You need to take it easy and get plenty of tender loving care. Remember that the death of a loved one is one of the biggest stress factors in life, along with divorce and moving house. How do you feel being on your own in an isolated environment?
Do you have any hobbies?
I think you deserve a lot of credit to have done a degree in Business Administration to concentrate your mind.
Be easy on yourself. Janette's death is so recent that you must give yourself a lot of time to recover from it.
Wishing you as good a week as possible.
Best wishes,
Sylvia0 -
Hello linali (Lindsay)
We have not heard from you in a while, so I am posting just to say that I hope all is going well for you. I know that you devote a lot of your time at the cancer centre, so I hope things are going well there too. I hope you have been seeing your grandson and that all is well with your son.
Thinking of you.
Best wishes.
Sylvia xx0 -
Hello sam52
Are you having your green tea and chocolate right now?I thought you would like to know that, on Saturday, we went to Exeter for a bit of relaxation and went into a shop called Hotel Chocolat. It is obviously there in competition to Thorntons. We had seen it on the web and discovered that it sold 100% dark chocolate. We went in out of curiosity and found the chocolate. As you would expect from the name of the shop it was expenssssive. It was £3.50 for a tiny piece of chocolate weighing a mere 35 grams. On principle we did not buy it. We shall stick to our 90% Lindt chocolate at £1,84 for 100 grams!
In Morocco in the souks the stall holders used to push their wares on you, saying, Regardez, Madame, pour le plaisir des yeux. Sometime I shall have to taste this 100% chocolat, pour le plaisir de ma bouche!!!
Hoping all is well.
Love
Sylvia0 -
Sylvia: the dexamethasone put me into a horrible irritable state, I could not get comfortable in any position and I could not sleep. I believe that was all steroid driven - probably the "coming off of" as it occurred beginning at 3:30 a.m. in the morning AFTER I took the oral dose the day after Chemo. Prednisone at the normal "I-have-a-reaction-to-poison-ivy" dosage makes me euphoric, hyper-emotional (on every level), and sleepless. SO I may be awake, but will be very HAPPY to be awake. I have a few sewing projects planned if this is the case, and may complete the whole task during the week . . . If I feel fine otherwise, I may come into work and not take sick time (that I am spending quicker than I am acruing). THANKS for caring for me!
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Hi Sylvia and all....
Fern I remember Dexa well, and remember that the worst time was coming 'down' from it as you said yourself..I'd get upset and feel withdrawal symptoms almost on a Sunday as I would have had my last dose the day before.
Bernie, hello
Love your hair and loved the Olympics commentator quotations, hysterical!Chatterbox, I'm not sure whether what I had was chemo brain or menopausal side effects, probably a combination of the two. But certainly while on Taxotere I felt I was too muzzy headed to drive from day day 3 to about day 6.
Dulcie keep strong will be thinking of you tomorrow.
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Hello Sylvia!
That was so funny reading your post (albeit 3 hours after you posted), since I really was drinking green tea and eating dark chocolate! I was delighted to find a favourite tea again last week in Sainsbury's, which I had been unable to get for ages : Dragonfly Tea Organic Moroccan Mint Green Tea. I don't kow how it compares with the real thing in Morocco, but it does taste good.......I have also planted lots of mint in the allotment, so that I can have some fresh mint tea whenever I feel like it.
I think I went into a Hotel Chocolat shop in London (Moorgate, if I remember correctly) - and had a similar reaction - c'est tres tres cher! But I would be very interested in trying 100% plain chocolate sometime - strictly pour le plaisir de ma bouche, bien sure! That title 'Hotel Chocolat' reminded me of the book by Joanne Harris; have you read it? I think they made a film of it too. I finally finished 'Wolf Hall' by Hilary Mantel......very heavy-going. I am reading a book now by one of my favourite authors - Rose Tremaine - 'A Swimming-Pool Season'. She is a very versatile writer and all her books are very different.
I was with my father all weekend and missed the sweltering London temperatures - 32 degrees apparently.When I left on Saturday morning I felt as though I was going to melt,but as I went further West it got gradually cooler.We were lucky to see the sun at all in Worcestershire.
Only two weeks of my holiday left; the time has gone all-too quickly.
With love,
Sam
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Round 2- done. NIGHTMARE IV. Took them THREE to get it right. #2 was in my hand for an hour before I convinced them that it was NOT burning but was PAINFUL and my arm was an ice cube. Horror for a needle -phobic. I'm done ranting. It's over. I walked at the park. 5 16 ounce bottles of water done. No problems. I had a major crybaby event and am very embarrassed. I haven't cried like that at all since diagnosis. Deep cleansing breath....... ok. I'm done. Brain MRI with contrast and neulasta tomorrow. Then 50% done. Yeah. Nighty Night!!! Thanks for listening to me being a big baby and slightly ranting!.
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Absolutely nothing wrong with ranting, raving or crying like a baby. You have every reason to do all of these things, separately, or all together, whenever you feel like 0
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Hello FernMF
Thank you for your posts. It is so interesting to learn about the different steroids and the way they affect people. After reading your posts, I was talking to a cousin of mine on the telephone, and I asked her what kind of steroids she was on to control COPD and she told me Prednisone and that they made her feel good and full of energy. She does not take them all the time, but when she is on them she takes seven small doses a day and then gradually weans herself off them until she feels the need to take them again.It is good that you have some sewing projects planned to fill in time. If you have that many hours awake you might like to undertake the reading of War and Peace by Tolstoy. It is an excellent book and I read it years ago. Alternatively you might like to read Our Mutual Friend by Charles Dickens. Again it is a long novel but easier to read.
I was sorry to read that you had trouble with your IV for your second round of chemo. I know that the nurses do have trouble doing this. I often came away with a bruised hand. I would not worry if you have a cry. You must remember that you are in a highly emotional state and that crying brings a lot of relief.
I do hope all will go well with the MRI scan and the Neulasta.
We are all here for you.
Thinking of you.
Sylvia. xx0 -
Hello Maria_Malta
It is so good to have your posts and you are being so helpful to those going through treatment. You always have words of such wisdom. I am sure you are a great comfort to people like Dulcie and FernMF, who are having a tough time.What are you reading these days, Maria? Do you remember when we were reading that astounding book on cancer entitled The Emperor of all Maladies? What a book!
Fond thoughts.
Sylvia xx0 -
Hello sam52
Thank you for your post. I was interested to know that you had found one of your favourite teas again last week in Sainsbury's. Products do come and go in the supermarkets. I have had the Dragonfly Organic Moroccan Mint Green Tea and I do like it very much. It has a most distinctive taste. It is so long ago that I was in Morocco that I cannot really compare the Dragonfly tea with what I used to drink there. I did not realise I was drinking green tea. I do remember how it was served up at festivities at the school in funny shaped teapots. The only thing is it used to have a lot of sugar in it. Tea leaves went into the pot, followed by lumps of loaf sugar and then fresh mint leaves. It used to amuse me that the teapot was held up quite high and the tea poured into glasses, never cups. It was very addictive and always served with big plates of fresh raw almonds. Somehow a festive spirit was created without any alcohol of course, which seems to be the Western world's essential ingredient for having 'fun'!I shall think of you having your mint tea with fresh leaves from your allotment.
I was interested to know that you had been into Hotel Chocolat. I have not read the book Chocolat by Joanne Harris, but I do remember a friend of mine reading it. I have not read the other books that you have mentioned either. I have not had much time for reading lately, but when I have had had time I have been reading mainly non-fiction. I read Chavs, the Demonisation of the Working Class by Owen Jones, and found it excellent. I then went on to read Marx's Ghost, Midnight Conversations on changing the World by Charles Derber. I am now thinking of switching back to some novels and am thinking of reading the latest novel by Martin Amis, entitled Lionel Asbo.
I do not think I could stand the sweltering heat of London any more. It was bad enough here on Sunday and Monday.
I do hope you will enjoy the rest of your holiday. It feels as though summer is fast disappearing.
Love
Sylvia xx0 -
Hello linali
Thank you for your PM. I was very glad to hear from you.
I was sorry to read that you are having so many problems. I shall answer your PM a bit later on, as I have been up since 6 am and have not stopped doing things since then. I must take a break now and refresh my brain cells.
Do not worry about sending long posts. You must have noticed that I send quite long ones. So much of your information will be interesting and useful to others.
I have a very enquiring mind and am very interested in what you have to say about Aspergers syndrome.
I shall write later on.
Thinking of you
Sylvia xx
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Hello Sylvia.. yes, The Emperor of all Maladies is a totally brilliant book and my rather cautious/sometimes sceptical attitude to the 'latest news' about what might prevent or cause breast cancer comes from having read this book and being made to see quite how complicated and multi-faceted this terrible disease is...
I'm reading 3 books at once at the moment.. a book called Gesundheit by an American doctor called Patch Adams, about whom a film was made (with Robin Williams, not my favourite actor)..never saw the film, but Dr Adams is totally dedicated to his profession and believes that people should be treated for free and that the relationship between the patient and the doctor is essential to facilitate a cure. he is best known for his dressing up as a clown to establish relationships with children, and is an incredibly generous and public spirited man. My second book is a travel/philosophical account called The Snow Leopard, about a trek in the Himalayas, punctured with philosphical thooughts about life seen from a zen buddhist perspective, and the last, because I was so curious about a book which appears to be breaking all records, is 50 Shades of Grey, which I can tell you is absolutely not worth it, terribly written, trite and predicatable, and not particulalry erotic in my opinion either...and it certainly hasn't revolutionised my sex life
In fact it puts me to sleep! 0 -
Hello Maria_Malta
I share your views about cancer causes and cures, and do not take much notice about new 'cures' and discovery of new causes. I think, like you, that cancer is very complicated and multifaceted. I think that all the emphasis should be trying to prevent cancer and think that it should be easier to do this than finding a cure or cures. There are too many different types of cancer for there to be a magic bullet. I do not think chemotherapy or other drugs are the ultimate answer. They have devastating effects on the immune system and I do believe all that we are hearing about they kill cancer cells temporarily but eventually the cancer returns. What I do not understand is why we have cancer in our body as part of our make up. Most things in our body are there for a purpose but why would cancer be there and why would cells start to multiply out of control in some people but not in others. I suppose it is the survival of the fittest.I was so interested to know what books you are reading. That book Gesundheit by Dr Patch Adams sounds fascinating. I shall try to read it sometime. I do agree with him that people should be treated for free or free at the source of treatment, funded by taxation. I think it is awful that you can get privileged treatment if you pay. He sounds a truly marvellous man. Your second book sounds interesting as well. I do like anything that is philosophical and the human condition. It must be most interesting to see it from the perspective of a Zen Buddhist.
I had to laugh when you mentioned 50 Shades of Grey. It is everywhere in the bookshops here and is number one. The other two in the trilogy 50 Shades Darker and 50 Shades Free are also up there in the best sellers! I cannot understand why women are rushing to read them. Not only that, these three books have caused an epidemic of other such books and reprints of old books of the same genre. I cannot comment on the contents because I have not read them, but I do wonder what it says about women. I wonder what Sigmund Freud would have to say about all this. It would probably be something along the lines of "I told you before that the problem was with women's tight stays. Thank goodness they have loosened them good and proper now."
I saw the authoress of this book being interviewed on a television programme. I found her quite boring and her talk had more effect on me for falling asleep than any sleeping pill would have done!
I know there was some talk of this book on the TNS.
I really liked your smiley.
Someone on another thread was asking for ideas for discussion at her breast cancer support group as a change from cancer, about which you do not always want to talk. I think talking about books that you like or do not like is quite a good idea.
With all these erotic books I was wondering what happened to No Sex Please, We are British!
Wishing you all the very best.
Sylvia xx0 -
Middle of the night awake. Not miserable, just awake. Someone on another thread asked about efficacy of four versus six cytoxcene and taxotere treatments. Anyone have experience with that for my type diagnosis? (See below) thanks.
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Hi Sylvia ,
Thanks for the pm. I have done the interview with the local paper for our LAP IN MY SHOES and if you would like to check it out,it is on line at www.clarechampion.ie. Wasn't too happy that I had to have a photo taken but it is all in a good cause. They did focus onthe SEs etc as I suppose for them it catches the attention more. Makes me sound like a dramatic hypocondriac.
We are keeping our fingers crossed that the weather will be fine.
I think the reason that people with aspergers are disorganised or untidy is that they become overwhelmed by tasks. Even though they can concentrate on and be knowledgable on many things, this is selective and often doesnt translate into everyday living. Leigh is high functioning but has ADHD too.
Today we went to an open day at a guitar school. Damian is thinking of getting lessons to perfect his blues playing. Coincidentally the photographer from the clare champion who had taken my photo on wednesday evening was there and as Damian was the only adult checking the school out , he took a photo of him tuning a guitar for next week's paper. So it is becoming our own family paper!
The suggestion of a book discussion group is a great one and something that we had thought of for the winter months at our centre. At this moment though I read alot but they are more light fiction of thrillers as I need a distraction .
Just to say hi to Michael and good luck with the launch. As for the chemo brain I still have to write lists if I have things to do. Peoples names also are still a problem for me and sometimes I find myself looking at ordinary things and I cannot remember what they are called.
Sending good wishes and peaceful thoughts to everyone on here
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Hi FernMF - I just happened to see your post about TC and 4 versus 6 treatments. My diagnosis was similar to yours and I had 4 rounds. After the last one, i was so nervous about being done that I was practically begging my MO to give me more! But, he explained that for early stages, there has been no evidence of any improvement in outcome between 4 and 6, but there is definitely more toxicity. It seems like 4 TC is becoming more standard for early stage now, regardless of hormone status.
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Thanks Jen: I was asking my hubby what he remembered about the 4 vs 6 conversation with my oncologist - same report. . no more efficacy - so - yippee, I am half way through. This round was WAY easier than 1st round. I believe the change of steroid was the key . . . switched to prednisone (120 mg total) the day before and same the day after - then on chemo day, dexamethasone - but they halved it to 6 mg instead of 12. So, my middle of the night awake but NOTHING ELSE last night was the worst of it. Today I have eaten normally, walked two miles, took two naps (3 hours this a.m., 2 hours in the afternoon) . . . feel good tonight, moderately tired, ready to read a bit, take my sleeping pill and go to bed. Thank GOD!!!!!! If all is well, I'm going to work tomorrow.
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Glad you're feeling good, FernMF. I found that TC was very managable. More than anything, I'd have one or two days each cycle where I ended up so exhausted that I just stayed in bed. I'm 6 months pfc now and I feel like I'm nearly back to my old self. I had some aches and pains following treatment, but they disappeared almost overnight in the past couple of weeks! It gets better...sounds like you're doing really well, so you'll bounce back in no time.
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Thanks Jen. Here is hoping! Anotheraeake in the middle of the night and nothing really definably wrong. But, I'm awake. Halfway done feels o.k.
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Hello linali
Thank you for your post and for the link. I have just read the article and found it interesting. It sounds as though the centre is doing an excellent job. I do hope that all will go well with the LAP IN MY SHOES and that weather will be fine.I was interested in what you had to say about people with Aspergers and the fact that they become overwhelmed by tasks. I suppose one answer is to keep your lifestyle as simple as possible and to be a minimalist. I know that the very elderly people in the apartment complex where I live complicate their lives by hoarding everything and so are continually moving possessions around but never achieving anything. They are surrounded by clutter, that someone else will have to clear out when they die.
It is very interesting to know that with Aspergers you are selective in your concentration and knowledge. It sounds like an in-built mechanism for not doing things that you find stressful. I can understand that this means a lot of work for you.
It looks as though your family is becoming well known in your local paper with photographs of you appearing and then next week Damian.
I do think discussing books is a good idea and I do not think it matters much what you read, as long as you enjoy it and that it enables you to switch off for a while from the everyday problems of life.
Good luck for today. I hope you and your family have a good weekend. Try not to worry too much. Things have a way of working out in the long run.
Best wishes
Sylvia x0 -
Hello FernMF
I do hope all is as well as can be expected as you go through chemotherapy.I think oncologists are the only people that can make decisions about the chemotherapy treatment of their patients. I know from my own oncologist that a lot of thought must go into decisions about what kind of drugs are to be used, the number of cycles etc. This is because all cancer treatment is individual and will depend on different factors. I know that the dose of drugs is calculated on the weight and height of the patient, and I would think that the number of cycles would depend on stage, grade etc. Of course, the more doses you have, the more probability I would think of increased side effects as your immune system becomes more and more compromised. We cannot really generalise. Judging by what other people go through, I think I must have been very lucky to have had so few side effects.
I think that the choice of chemotherapy drugs for breast cancer is much the same for whatever your receptor status. The difference comes in after surgery, chemotherapy and radiotherapy, when those with positive hormonal status are put on Tamoxifen, aromatase inhibitors or herceptin.
Have a good weekend and enjoy yourself.
Best wishes
Sylvia x0 -
Hello Jen78,
Welcome to our thread. It was nice of you to post and offer support to FernMF. Going through chemotherapy is probably the most challenging part of breast cancer treatment, but it can be done. Patients need a lot of support and comfort.
I hope all is well with you ten months after diagnosis and with your treatment finished.
Best Wishes,
Sylvia.
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