Calling all triple negative breast cancer patients in the UK
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Good morning Sylvia,
Here there is a great change in the weather with strong winds and hailstones.No garden for a while.
Leigh uses Leighanna now. She felt that it would be less confusing than changing it completely. Ironically I chose the version of the name which is more unusual for a boy. I think that I had seen it used by an actor Leigh Lawson.
Today is Kerry's first day at home on her own with Max and Oskar. Damian took them home yesterday. The health visitor will call today and tomorrow they have an appointment with the pediatrician in Wexford. I just hope that all the services are there that people say there are.
Next week they go to Crumlin which is the national centre in Dublin to get a scan of his heart. They should have another test for his hearing too but all the appointments are on different days and she is finding it over whelming.
I am not sure when I can go again, I have become quite I'll, exhausted with a bad chest and cannot get my breath. I am going to the doctor this afternoon before it takes a hold. I feel so frustrated because I need to be well to support them as they are 4 hours drive away.
The health visitor had suggested to Kerry that she needs to join the Downs Association and a mother and baby group....to connect with others and have have a network where she lives.
On Friday there is our annual healing mass , it will be the centre's 5 year anniversary next week. Of course there will be a party later but the mass will be ecumenical and brings a sense of unity. Poignant because of those that we remember but thankful for those of us here and enjoying all the centre has to offer. St Peregrine is the patron saint of cancer and there is a fabulous sculpture done by a local man at the entrance to the church.
I hope to catch up with Chris's e mail tomorrow.
Please keep my precious little man Max in your thoughts.
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Hi Amanda,
Welcome, this a place where you find support and reassurance, an opportunity to voice your concerns, ask questions but with no pressure to decide one way or another.
I had 6 FEC but had my surgery first, 6 FEC then radiotherapy.
Good luck with your surgery we will be thinking of you.
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Hello Lindsay,
Thank you for your post. I think the name Leighanna sounds very nice and was a good idea. I have a cousin called Lee and I did find the spelling Leigh unusual when you first mentioned it and I thought it might be Irish.
I would imagine that the first day home on her own with Max and Oskar would be very daunting for Kerry, but slowly she will adapt. Let us hope that she gets all the help and support that she needs. I do hope she gets good news from the scan. It must be very tiring for her with all these visits.
I think it is a good idea for Kerry to join the Downs Association and a mother and baby group. What she does not need is to be isolated with two children.
I hope you enjoy the five year anniversary at your centre. I did not know there was a patron saint of cancer.
I do hope you will catch up with all the news from Chris's e-mail. There is so much useful information.
Did you read the article in the newspapers about the woman, a breast cancer nurse, who was wrongly diagnosed with breast cancer, but did not find out until after she had had the treatment. Apparently the hospital mixed her records up with someone else's. Can you imagine that? It just shows you that a patient has to be on the ball all the time, question everything and try to be one step ahead of the medical team.
I am sure that little Max is in the thoughts of all of us on the thread.
Thinking of you and sending fond thoughts.
Sylvia xxxx
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Morning everyone
Thanks for your words of support. Already got my bag packed for Tuesday lol.
Has anyone experienced shoulder pain on the same side as affected boob? I've had this since chemo and it seems to be getting worse. I've mentioned it to onc but she says she is not concerned about it. I think if it continues after the op I will ask for a scan .
Gosh the story of the lady who's records got mixed up is so scary. I agree Sylvia you have to be one step ahead. My surname is Davis so I bet there are lots of us around . Lol
Lindsay I think leighanna is a lovely name. Someone used to come into the opticians where I work with the same name but spelt lianna I've always liked it .
Hope you all have a lovely day 💖xx
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Hi, Amanda
Glad you have found this place and are getting good advice. I had a rt. side mastectomy over a year ago and no reconstruction. Although a couple of months ago my breast surgeon asked me if I was ready to do it now! That surprised me because I didn't even know it was an option anymore. But I would have to do some hard thinking about that. I am 62 and not sure I want to go through all that.
I have shoulder pain on my rt. side too, same as mastectomy side. But I know what mine is, it's a partially torn rotator cuff that has bedeviled me since last July. I have been in therapy forever and it is better, but yesterday I twisted the wrong way while working outside, and it is hurting in a way it hasn't done in a while. I find that very disheartening. Anyway, back to you, I don't know the answer to your question. If you had surgery already, I could see the scar causing tightness and discomfort. But you are not there yet. Your plan is probably best, see if it continues and then dig into it a bit deeper.
I certainly wish you the very best results with your surgery next week. Be sure and follow through with all the exercises they will give you to do. I was only in the hospital one night, and in my opinion that was not long enough. They come in and tell you all these things you have to do while you are basically still drugged up from the surgery and then send you out the door. I did not have a nurse come to the house. I am in USA, perhaps will be different for you, I hope. But it is a good feeling to know the lump is gone!!
Linali, I agree with the others Leighanna is a beautiful name, very musical
Best wishes, Amanda, and wishes for a speedy recovery.
Mary (maryna8)
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Amanda,
I got myself so worked up about the shoulder pain which I had before and after the mast. Everytime I went to the once I kept telling him about the pain and he would just say it was normal, I googled it and everything! I was convinced it was sinister. My friend who is an onco nurse told me to think about how the chemo is reducing the size of the lump and as its dragging all that tissue in, there is bound to be some pain. I still have some pain round that area, so rest assured you're not alone with that pain, I think it just comes with the territory. After the mast I also had pain and a small lump under the scar and convinced myself it was bone cancer, it was just a build up of fluid....I don't think we will rest easy for a while yet. Good luck for Tuesday.
Lindsay, I had a boyfriend called Leigh, always thought it was unusual for a boy but still a lovely name.
Happy weekend all!
Mary
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Syliva,
I am in Exmouth on Friday for my son's karate weekend! It's held every year at the Haven, are you far from there? It's always good to see him train at these weekends and he loves them, we can also chill out with a glass of wine!
Love, Mary
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Hi ,
Thank you all for your supportive comments about Leighanna.
Just a quick post as I am off to our healing mass. I need a lot of it right now as Max failed his hearing test again today. Naturally Kerry is very upset and it is hard to find words of consolation. I hope that some of the prayers will be directed to her.
I am speaking about the centre and my experience of cancer.
Someone else was to do it but she is newly rediagnosed and doesn't feel strong enough to do it, so I agreed to fill the gap.
Many healing thoughts will be going to everyone.
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Thank you for your support ladies ... So grateful.
Just been to GP and I have a chest infection
(((. He has given me antibiotics hope I'm going to be ok for the op on Tuesday .Xxx
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Hello Amanda,
I have just been catching up on the posts. I was reading the post in which you mentioned you had shoulder pain on the same side as the breast with the cancer tumour. Anything that causes you concern should be mentioned to your medical team. You might like to phone your breast cancer care nurse or phone the secretaries to your oncologist or breast cancer consultant. Since your date for surgery is so close you might want to mention it on Tuesday morning before surgery if you can. On the thread we can only second guess. Some women have lymphoedema in the arm or hand after surgery, when these swell and become puffy, so you should clear up the pain in the shoulder before surgery. Some women also form seromas after surgery, again swelling from fluid. They are nothing to worry about and can be dealt with.
Re-reading your post, I see that the oncologist has said that the pain in the shoulder is nothing to worry about, so monitor it and if it persists ask again and insist on a scan.
We all have to keep a check on everything and double check details. I remember when I was going through treatment that I got a call to say that I had missed an appointment about reconstruction. Since I had never contemplated reconstruction, and it had not been offered, I had to tell the person I had never had an appointment and there must have been a mix up. At our surgery, some years ago, my husband's records were mixed up with somebody else's and we had to get that all sorted out.
We shall all be thinking of you on Tuesday and I do hope that the chest infection will not stop the surgery going ahead, but I think it might. How long are you going to be on the antibiotics and how long have you had the chest infection? That chest infection is probably a result of the chemotherapy treatment which has lowered your immune system and made you more vulnerable to picking up infection. Have you mentioned your chest infection to anyone at the hospital? I know we are going into early spring bank holiday, but there should be someone you can contact at the hospital.
Thinking of you and sending best wishes.
Sylvia xxxx
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Hello Lindsay,
I was so sorry to read that baby Max had failed his hearing test again and I just wanted to say that I am thinking of you all. My heart goes out to Kerry and I hope she will be able to find the strength to cope with all of this. Will Max be tested again for his hearing?
I was interested to know that you spoke at the centre about your experience with cancer. How did it go?
It was so kind of you to take the place of the woman newly re-diagnosed who did not feel strong enough to do it. I think she was probably feeling too vulnerable and emotional. It is bad enough getting a diagnosis of breast cancer and I cannot imagine how it must feel to be re-diagnosed.
It is a wet Saturday morning here to begin the Bank Holiday weekend. I see it is a Bank Holiday, early spring, for Ireland as well. We desperately need rain here in Exmouth for the grounds, as the soil is so hard. I had a busy week this past week in our apartment complex, so I am looking forward to a quiet day today so that I can catch up with some reading. What are you planning to do?
I have been watching all the election coverage, but have not been impressed. There is so much acting and posing and I think the journalists show off and put on an act. I would like to see much more gravitas, professionalism and statesmanship all round. We are a long way from Clement Atlee and from politicians acting for the good of the greatest number of people.
That is all for now.
Keep in close touch during this difficult time for you and your family.
I think it is coming up to an anniversary of your diagnosis and of Kerry's birthday. Was it on June 10th for both?
Thinking of you.
Sylvia xxxx
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Hello Marymargaret,
Thank you for your post. I do hope all goes well with your son's karate weekend at the Haven. I suppose that Haven is what we call Devon Cliffs holiday site. I know I have a full day of duties here at our apartment complex on Friday, so I shall not be free that day. I shall have to post later in the week to see about the weekend. Are you here on Saturday and Sunday? By the way, I do not drink. I have not had any alcohol at all since I was diagnosed on June 20th 2005 and I did not drink much before that. I have not drunk at all because it is one of the risk factors for breast cancer. I do not miss it at all. I chill out on green tea! I have Clipper's leaf green tea, Clipper's decaffeinated tea and Pukka matcha green tea. The last two are tea bags.
On the TNs I saw a post from mitymuffin, whom I remember from way back. She was posting to celebrate five years since diagnosis and being discharged from hospital. Her oncologist had told her to continue being physically active and not drinking any alcohol.
I shall talk to you later in the week.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I am posting to say that yesterday I went for my breast cancer check up with my oncologist and I am glad to be able to post to say that everything was fine. She checked carefully over my mastectomy area, under the arms and all around the neck area and checked my good breast. She was able to discharge me from the hospital. I was very glad to be discharged after almost ten years. It will be ten years in just seven weeks time.
I had a nice talk with her and we both said that it was hard to believe that ten years had gone by. She asked me how I was and I said I was fine and that the worst side effect I had from all the treatment was the neuropathy in the feet and she once again said it was due to the chemotherapy (docetaxel, Taxotere). I told her that I could cope with it and that the general feeling was of numbness and roughness, even though to the touch the soles of my feet were soft. Neuropathy does not disappear with time, it is permanent.
I thanked her for taking good care of me and shook her hand. Raymond did the same and thanked her for taking good care of me for ten years.
At the hospital I got talking to a woman sitting next to me. She remembered me from the previous visit. She had had hormonal breast cancer, was five years from diagnosis and was hoping to be discharged. She was taking Arimidex but was hoping to come off it. She went in before me and gave me the thumbs up as she came out and I went in.
I also saw another woman whom I recognised from 2006 when I went for some physiotherapy to get my arm in good shape. She remembered me and we had a little talk. She had had hormonal breast cancer and was volunteering at the hospital. She had been doing it for a long time and was stopping the volunteering this year. She must be about fifteen years since diagnosis.
I felt very good as I left the hospital and as embark on a different stage in life, cut loose from hospital visits. I know that I shall continue to be as strict with myself as I have been and not take anything for granted. The oncologist told me that if I have any concerns in the future, to contact her through my GP.
As I left the hospital the past ten years seem to run through my head – the trauma of diagnosis, not wanting standard treatment, going to see the homoeopathic consultant, the alternative doctor, making up my mind to go through treatment, going through it and coming out the other end. It was all very emotional because until that day in June 2005 I had never been ill and a world of hospitals, doctors etc. was all rather frightening to me.
For those interested you can read my story on line that I did at the invitation of the Moderators. It is under stories around the world.
http://www.breastcancer.org/community/acknowledging/world
Thinking of you all and thanking you for making this thread so worthwhile. Keep it up. I hope I have been of some inspiration to you. You have certainly added richness and meaning to my life.
Fond thoughts and best wishes to you all.
Sylvia xxxx
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Hi Sylvia and all here
Sylvia I'm extremely happy to hear after ten years you are fine and everything is OK. You are a real inspiration to all experienceing this hard disease. Though being far apart, I found much comfort and sympathy here and in your kind and caring words. I wish one day I become an inspiration to others like what you have done.
Here in Iran we celebrated father's day today. We took a two day trip to the north as my father was in his villa to congratulate him and express our gratitude to him. The weather was lovely and we had a great time with all my family (father, mother ,brother, sister and my cousin). My father's a two year survivor of colon cancer. I will post some pictures later.
Lots of love
Hanieh
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Hello Hanieh,
It was nice to hear from you and thank you for your kind words. I am so glad to know that, although you are far away, this thread is helping and inspiring you. I am sure you are also an inspiration in the way you have dealt with your own cancer journey. You seem to be a sensible and deep thinking person.
I was interested to know that you have just celebrated Father's day. Here in the UK it is celebrated in June and Mother's day is in March, just before Easter. It is usually celebrated by sending cards, giving presents and having family meals, either at home or restaurants.
I was interested to know that you have a brother and a sister. Do you get to see them often? I am the only girl in a family of four brothers, two older and two younger. The older two are dead. One died when he was ten and the other died in 1995 of cancer. The cancer had spread to the liver and pancreas when was diagnosed, and the primary was unknown according to his death certificate, but is looks as though it may have been colon cancer. He died very quickly, thirty three days after being diagnosed. I have my two younger brothers who seem healthy and enjoy life to the full.
I do hope your father continues to make good progress with his colon cancer.
Sending fond thoughts.
Sylvia xxxx
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Hello everyone,
I am posting to say that a friend of mine phoned me yesterday to tell me that there was a drama on the television on Sunday May 3rd on BBC1 at 8:30 pm, entitled The C word. It is a modern love story based on the book by journalist Lisa Lynch about her life and cancer, starring Sheridan Smith, aged 28, married for eighteen months and trying to get pregnant. The last thing Lisa expects is devastating news that she has breast cancer. I shall certainly watch this.
If you want more details, there is a whole article on pages 10-13 of the latest Radio Times, dated 2nd to 8th May 2015 and Sheridan Smith is on the cover.
I read that the actress had her hair shaved off to play this role. There is bound to be some details on line. Lisa Lynch died aged 33 in 2013 after cancer spread to her brain and bones.
I saw that you can buy a copy if the book The C-word by Lisa Lynch for £5.99 instead of £7.99 plus £1.25 p&p. It can be ordered on telephone 01326 555752 or visit radiotimes.com/cword19.
While reading through this Radio Times I also found another book of interest on page 163, under Your RT Books. This book is entitled Last fragments: everything I want to tell you (about this magnificent life) by Kate Gross.
Like Lisa Lynch, she wanted to write honestly, in the same manner. She was writing an extended letter to her five-year old twin boys after being diagnosed with advanced colon cancer at the age of 34. She died on Christmas Day 2014.
The book by Kate Gross is £13.49 with free p&p. You can order this book on telephone 01326 555752 or visit radiotimes.com/yourbooks.
I was interested to read that Kate Gross was a former aide to Tony Blair and that she described writing as "a gift to myself, a reminder that I could create, even as my body tried to self-destruct".
Both these books appear to be written in a pragmatic and witty way.
I am sure I shall get to read them.
Wishing all of you a good weekend. It is rather a miserable day in Exmouth, damp and cold.
I hope all is well with Suewirral and Jackpot (Gill). We have not heard from you in a long time.
I hope all is well with Breastcancerhusband (Tom) and that your baby is thriving, and that your wife is coping well with chemotherapy.
Best wishes to everyone.
Sylvia xxxx
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Hi Sylvia
I'm sorry to hear that you have lost two brothers. I hope you and your two younger brothers have long, healthy, happy lives.
In fact I have two brothers and one sister. My brothers are older and my sister is younger. Yet , there are some complications between me and my second brother as he is too religious and too prejudice to be with. I somehow find it difficult to be in touch with him as he always considers us too secular to spend time with and also he doesn't like my husband' s joyous manners.
But with my elder brother and his wife I'm really happy. I deeply love them both and we have the greatest time with each other.
I can not call my self either religious or secular. I love my God who has always been with me and I love all his creatures. I know we are here to love all and to enjoy our lives to the fullest . We are all from His divine soul so we are all divine regardless of where we are and what religion we have. It's just our manners that make us what we are.
Lots of love
Hanieh
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Hello Hanieh,
Thank you for your post and your kind words.
You have always something interesting to say. We have a saying here that you can choose your friends but not your family.
Keep smiling and wishing you all the best.
Sylvia xxxx
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Hello Amanda,
I am posting just to let you know that I am thinking of you today, hoping that your surgery will go through and that you will make a speedy recovery and will be back home quickly.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
This thread has gone very quiet again. There are lots of views but very few posts. If you want to keep this thread going, it has to be two way.
I was surprised that there have been no comments from those of you in the UK about the drama on BBC2 on Sunday night, entitled The C Word. I watched it and it was a very sad story indeed.
I was wondering if those of you in the UK are concentrating your efforts on the General Election? All of us patients that have been through cancer should give thanks to the NHS that we have and that we need to maintain. Remember, people fought and died to obtain the vote for ordinary people and we should not take it for granted. I feel concerned that the NHS is being slowly privatised and the good work of 1948 systematically undone. I shall definitely be out to vote.
Best wishes to all of you.
Sylvia xxxx
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Dear Sylvia,
I think you may have misread my post. I will one year from diagnosis this month and the weekend away coincides nicely with a celebratory tipple with John and some friends, whilst the children train. I can't remember the last time I had a glass of wine as I also know too well the risks associated with alcohol and recurrence. I know you are a fellow green tea drinker, that and water is my daily liquid intake...not wine! I am an avid researcher on this disease and have read many studies and books to educate myself on giving me the best possible chance. That was how I found about the trial for Oluparib (called Olympia). I was also just wondering if you were near the holiday park, as it is such a lovely part of Devon and the beach there is beautiful.
I didn't watch the C word drama as I knew the sad ending and knew it would make me anxious again. I am very glad that this wasn't out last year when I was newly diagnosed, can't help but wonder why they have to make these productions but I suppose that's just me being selfish.
Amanda, hope you managed to get the operation today.
Mary
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Hello Mary
Thank you for your post. I do not think I misread your post and I did not mean you to think that I thought you were a regular drinker. I know from your posts that you are very informed, that you research carefully and that you do everything to help yourself with this disease. Over the nearly five years since I started the thread, it seems to have attracted women who want to be informed and who want to do everything to help themselves. I have nothing but respect for you and think you are a great asset to the thread.
Congratulations on reaching one year since diagnosis and keep up the good work. I can understand how you want to mark the date with a celebration drink with John and some friends while the children train.
I have found that here in Exmouth that people seem to lose interest in having a social life with you if you do not drink. No matter how many times Raymond and I tell people we do not drink alcohol, they still keep giving us bottles of wine and such for Christmas or as a thank you if we have helped them in some way.
I am sure that on this thread we all know that alcohol is a risk factor in breast cancer, and it is one of many risks. We all know that cancer is a multi-causal disease.
Have you now started the olaparib trial (Olympia)? I am sure we shall all follow this with interest.
We shall all be thinking of you on May 22nd.
I am counting down the days until June 20th when I shall have reached exactly ten years. I was very pleased to be discharged from the oncologist on May 1st. It was a pleasant last appointment with her. Already I realise I am in a different phase of this journey. I think from reading posts on other threads that some women consider themselves cured on being discharged, but I do not think like that. I know cancer can come back at any time. I shall continue to be vigilant and do all that I can without the back up of the hospital.
I can understand why you did not watch the C Word drama. I think the sad ending would have caused anxiety in a lot of patients. We have to remember that we are all different and above all that most of us are surviving. Patients with metastatic breast cancer can survive for a very long time. There are probably more details on Lisa's blog but from the drama we do not know what kind of breast cancer she had, just that it was IDC. I did pick up on the fact that at diagnosis she had a lot of lymph nodes affected.
I have a friend whose friend has been living with metastatic breast cancer for quite a few years. She was young on diagnosis, had hormonal breast cancer, and was also on Herceptin, so was HER2+. She decided to have a baby while on treatment and I think that baby is now eight years old.
None of us knows which way our cancer journey will turn.
I do hope you have a good weekend at the holiday park. I know it is very popular and that it can increase the population of Exmouth, sometimes by 18,000. It seems to have several different names, Sandy Bay, Devon Cliffs, and Haven. Do you come regularly?
Sending you very best wishes.
Sylvia xxxx
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Hi Sylvia,
Just a quick post to let you know that I am doing OK. My life is much busier than I would like it to be, but having four adult children means that there is always someone needing something or some issue to grapple with. Also, I had to say good-bye to my heart dog of 13 years - it was a very difficult time for me and my grief is still pretty raw. The house is very empty without him - I loved him so very much, and he was my constant companion when I was going through all my treatments! I miss Shadow very much.
I am so happy that you have now been discharged from the hospital, and if anyone deserves to be free from cancer it is you, because you take such good care of your body. Congratulations!!
I do read the e-mails from cancer active, but like I mentioned before, I find some of the content somewhat depressing because it sometimes makes me second guess the decisions I myself made in terms of chemotherapy and radiation. I think most of the articles are very informative, but I do feel that they are quite opposed to mainstream medical treatment. That is not necessarily a bad thing because it is good to get other perspectives on topics.
I bought some apricot kernels and they are very difficult for me to eat (unpleasant), but I will endeavour to use them up since I paid quite a bit of money for them, but I most likely will not continue with them.
I have started drinking a half glass of red wine with dinner every other night - I really do enjoy it, and on a special occasion I will sometimes have a glass and a half - but that is rare. I did not touch alcohol for over 2 years after diagnosis, but I have relaxed a bit now and do imbibe. I also drink one cup of coffee each and every day. It is organic and my doctor gave me a heads up. (My confession for the day LOL).
You commented on not many people contributing to the forum, but I think that might be because some people have moved on and are not as needy as they once were. I think it is a good thing - although - it is nice for the newer people to have more posts to read, I guess.
I see my oncologist next week and I am looking forward to see what she has to say to me - it will be 7 months since I have seen her which is a long time compared to having seen her every 3 months for 2 years.
I am one of those people who read often, but do not post very often. But I do like to check in and see how everyone is doing.
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Good morning Sylvia,
Yes June 10th is Kerry's birthday and my birthday too, also the day that I was given the official diagnosis in 2010. So like you June is a significant month. How does it feel to be coming to the 10 year point?
Last year my breast surgeon told me that usually people are discharged after 5 years. It was meant to reassure me at a time when I had many questions and fatigue and pain. It did the reverse as I never saw an oncologist after chemo finished and my GP always tells me to contact the breast cancer team if I have any symptoms that could be cancer related.
I do not like visiting the breast clinic and the long wait to see a registrar but it is a safety net for me and I do feel apprehensive at being totally discharged.
I am still a patient of the pain consultant. I wonder did I cause the tear in my shoulder by doing too much after surgery. Or rather not doing things correctly. Oskar was a heavy little baby.
Max is having his heart scan today in Dublin. The support that we were told of in hospital hasn't materialised yet. The early intervention team have not been in touch. Cutbacks I suppose. Some of the baby vaccinations are postponed because they have run out of vaccine and also because of cutbacks. It is very frightening, especially with a special little boy like Max.
Kerry has ups and downs and I hope that she will be put in touch with someone to talk to and offer practical advice. Yesterday a fox killed all of her chickens and it seemed like the last straw for her.
Tomorrow is the centres 5 year anniversary and the day begins with meditation facilitated by Dyananda a Buddhist followed by food and celebrations.
I hope that people will keep in touch on the thread. The support is great but also it is good just to hear about everyone's different lifestyles and experiences.
The weather here is grey blustery and wet. The last day before your election and from watching the campaign coverage it seems impossible to predict a result. I think that I will watch the live play done in real time on More. 4 tomorrow at 8 30.
I didn't see the drama on Sunday evening because we were visiting Leighanna in Cork. I had read about it and some of the women at the centre watched it.
Thoughts to everyone in treatment or surgery.
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Hello adagio,
It was lovely to hear from you and to know that you are doing alright.
I can understand how busy your life must be with four adult children. Just remember to look after yourself. I was so sorry to read that your dog had died and I know from other pet owners how heartbreaking it is for owners when their pets die. I can understand how empty your house must feel without him.
Thank you for your kind words about my being discharged from the hospital. It does seem strange to know that I shall no longer be going for hospital appointments. I feel relieved and a bit adrift at the same time. Of course, these appointments were just physical check ups and conversations, so I feel you can still not really know what is going on inside your body. I would not have wanted scans anyway, so I shall just continue life normally and hope for the best.
I was glad to know that you read the e-mails from Cancer Active because there is so much information in them. I think Chris Woollams is dedicated to everything to do with cancer and very much in favour of integrated treatment, orthodox, complementary and alternative. I think we all know that chemotherapy and radiotherapy are very toxic and we all know the long term possible side effects of the treatment, but they do keep us alive and get rid of the cancer. I think there is no harm in combining complementary and alternative treatments with them. There are also many cases of people surviving when they turn to different treatments when orthodox treatment can no longer offer anything. Cancer is a very complicated disease and we do not know its possible pathways. I know that I took homoeopathic treatments under the supervision of a consultant at each stage of my treatment and the only side effect I had during that treatment was fatigue, apart from the obvious hair loss etc.
I shall continue to drink green tea, both the Clipper green leaf, the Clipper decaffeinated green tea and the Supreme Matcha, and I shall continue with the bitter apricot kernels. In addition to that I shall continue to eat healthily (no meat, no dairy products and no alcohol), keep mentally and physically active and avoid negative stress. Apart from that I can just hope for the best.
You might like to try grinding up the bitter apricot kernels and mixing them in with some cereals or ground up seeds. I just eat them as they come, five at a time during the day with green tea. You might like to try the following that I do on a daily basis. I grind up some seeds (pumpkin, sunflower, linseeds or sesame) and put them as the base in a cereal dish. I sometimes put some pomegranate seeds or sour cherries on the base. I then mix up some plain soy yoghurt and put this on top. I decorate the top with a sprinkling of goji berries and some very finely chopped fresh coconut. It all looks very pretty and is very tasty and nutritious. Raymond loves it. You could put the ground up bitter apricot kernels in with the seeds. It is just a suggestion.
I can see no harm in your drinking a little red wine with your dinner. I read many good things about the benefits of red wine (resveratrol) and we all have to have some enjoyment in life. Please enjoy your red wine. I have also read recently about the benefits of coffee. Coffee seems to be one of the things where the 'experts' cannot make up their mind. One minute it is bad and the next it is good. I recently read that it is full of polyphenols, so that can only be good. As for wine, in my latest copy of What Doctors Don't Tell You there is a very good article about staying sharp and warding off Alzheimer's and dementia. One of the things is drink wine in moderation. It says light to moderate drinking appears to reduce the risk of dementia and cognitive decline. It says red wine is an especially good choice as it is rich in brain-protecting polyphenols like resveratrol. It defines moderate drinking as no more than one drink a day for women.
The article also mentions drinking coffee. It states several studies suggest that caffeine has a protective effect against dementia because of its polyphenol (anti-oxidant) actions.
You are right in what you said about the thread. I understand that people will have moved on and there is much more information about TNBC than when I started the thread nearly five years ago. I can understand that people move on and want to put cancer behind them, but we do need people to remain or pop in to support others. It is good to pop in and let us know you are fine and especially to mark years of survival.
I do hope all will go well when you see your oncologist next week. Please pop in and let us know how you get on, even if you post just a couple of lines.
Sending fond thoughts to you in Canada.
Sylvia xxxx
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Hello Lindsay,
It was nice to hear from you. I shall post more later, as I have to take a break now.
Best wishes.
Sylvia xxxx
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Hi Sylvia and all the other lovely girls (and boys). I have been on 2 holidays over the past month. Lucky me I suppose but have also had some horrible news about a friend with tnbc who has spread. I have been supporting her and must admit it has rocked me something dreadful.
Also I have had ongoing kidney/ side/groin pains since my diagnosis of bc 18 months ago. I have had numerous scans and investigations under anaesthetic with nothing found.
The pain comes and goes and does worry me and get me down. I mentioned it again to the registrar a couple of weeks ago at my follow up oncology appointment and she ordered a pelvic ultrasound scan and a blood test for tumour markers. Then last week I got a call from the scanning unit to say that they had contacted the doctor who ordered the scan and after a discussion they want me to have a CT of my abdomen, Now I am so scared that this is because my tumour markers are raised. My scan is booked for 19th May and my OPD is on 8th June when I will get the results although I don't think I can wait til then !!
I have also had a bad time with my daughter. She was let down badly by her fiance (now ex) last year and has now got herself involved with a controlling and aggressive man. I am trying to support her but she says I am wrong and he is lovely when sober!! I work with women who suffer with domestic abuse so know only too well this will end in tears.
Sorry for all this offloading
Anyway it has been good to read everyone's posts and thanks Sylvia for being there for us.
Sue xx
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BTW Sylvia, my fondest congratulations on your 10 years out of this awful disease. Here's to your next 10!! xx
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Hello adagio
I forgot to mention that I also avoid sugar. We all know that sugar feeds cancer cells, so the sensible thing is to limit sugar intake. The only sugar I really have is in the Lindt 90% dark chocolate and the sugar content is low. I actually think it is better to go for cocoa in the form of hot cocoa drinks (unsweetened of course!). I saw in the WDDTY magazine that cocoa figures on that list of 'staying sharp'. Cocoa is the key ingredient in chocolate and is chock-full of anti-oxidant polyphenols known as flavanols, known to have brain-protecting properties. Apparently drinking cocoa increases blood flow to the brain, stimulation that leads to "maintenance of healthy brain function and cognition". By the way, dark cocoa powder has twice as many flavanols as dark chocolate. Dark chocolate has twice as many as milk chocolate (and of course a lot less sugar). White chocolate contains no cocoa at all and so no flavanols.
I think if you stay away from processed foods it is quite easy to avoid sugar in everyday nutrition. Of course there is natural sugar in fruit but the body can absorb this.
Best wishes.
Sylvia xxxx
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Hello Sue,
I have just read your post and am so sorry about your friend, your own worries and problems and those of your daughter. I shall answer in more detail later on today. I am just getting ready to go to cast my vote, as this is very important to me. I am voting for the party that I consider will do the greatest good for most people, ordinary people.
Talk to you later.
Fondest wishes.
Sylvia xxxx
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