Calling all triple negative breast cancer patients in the UK
Comments
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Hi, Sylvia,
This is one of my busy weeks, half a week of meetings. I will be back to answer your post tomorrow.
Talk soon, Mary
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Hello all,
I am in New York City for my surgery today at 12.We spent the night last night.We walked 40 blocks from Penn Station to the hotel.The weather was beautiful-sunny and in the 50's. I tried to eat well last night since it will be awhile before I can eat.I am a little nervous about the surgery.Please keep me in your prayers.
Rhonda
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Hello Rhonda,
I just wanted to say that we are all thinking of you and sending you all our love and best wishes as you have your surgery. You are going to be fine and you will have finished another important step in your breast cancer treatment.
Let us know how you feel when it is all over.
Love,
Sylvia xxxxx.
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Hello Mary,
Thank you for letting me know that you have a busy week this coming week. I have been pretty busy this week as well and our thread has been quiet.
I shall look forward to hearing from you.
There was news in the Daily Express yesterday about how bras made of bamboo are being used to make post surgery bras for breast cancer. Apparently the bamboo helps with healing and prevents infection. |A picture was shown of a full bra so it would be good for those patients who have had a lumpectomy or reconstruction, but what about if you have had a mastectomy?
Thinking of you,
Love,
Sylvia xxx.
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Hello Hanieh,
You must be in to your new year now and Spring. What are you doing to celebrate?
I hope all is well with you.
Love,
Sylvia xxx.
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Hello everyone,
The thread has been quiet this week so far, so I suppose you are all busy getting on with your lives. I find my days fly by and I am always working through a list of things to do. I am always surprised at how days can develop and they are nothing like you expected them to be.
Today I went to one of the local shops to look at a fire inset for our fireplace. I had measurements etc. but I was surprised at how complicated something was that I thought would be quite straightforward. There were so many fire insets to look at that it was mind boggling. I found myself switching off and looking at all the beautiful paintings that were on the walls. This was so much more interesting than listening to the information about fire insets, even though the woman serving Raymond and me was very helpful. I was more interested in the paintings, especially when I was told they were by a local artist. I did not buy a fire inset and decided it needed more thought.
From there Raymond and I went to the centre of Exmouth to do a bit of shopping. I cannot get over how much the shops are overstocked and yet how difficult it is to find basic things. It started to drizzle so we decided to have lunch at our local garden centre, where we go often and are known by everyone.
The staff had organised a morning to raise money for Hospiscare. I had a really great conversation with a volunteer who had come to thank the staff. I told her how much the women at Hospiscare had helped me when I was first diagnosed and during my treatment. I used to look forward to their visits and I still see a couple of those women who helped me through my treatment. It is strange how something like this can lift your spirits.
Before this, in the town, I was walking through the shopping precinct when a little boy came up to me and said "I hope you have a very nice day". I thanked him and said that I hoped he had a nice day was well. He then said "Would you like a flower?" and gave me a rainbow coloured flower that he had made at school. I then noticed I had a group of children around me and then their teacher. She told me that the school, one of our local primary schools, were doing 'kindness week'. I told her that I used to be a high school teacher and taught French. She then said "Bonjour". All that put me into feeling in great spirit.
When I go back home we bumped into a former neighbour of ours, who, despite health problems, is a laugh a minute. We were laughing so much that it made you feel as though you were on a high. I truly believe that laughter is great medicine.
I do hope that all is well with you.
I was wondering whether Pam has heard about bamboo bras and how healing they are.
I do hope that Kath, Val, 4everStrong are doing well post-treatment and we must all remember that Lou in Singapore needs our support during her chemotherapy journey.
Best wishes to adagio, Amanda, Nili, and Gina.
That is all for now.
Sylvia xxxx
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Hi Sylvia,
I replied to you last night and must have hit the wrong button because when I checked in the morning it was not posted.
With regards to radiotherapy, I will give it a rest for now and probably ask about it again after I finished my chemotherapy.
I tried to prepare most of my food from the scratch. In making almond milk, I soak 1 cup of almond overnight. In the morning, I add 3 cups of water, 5 pcs of dried dates, 3 pcs of dried figs and a pinch of salt. I then blend it until smooth and use a cloth strainer to separate the milk. You can also use fresh fruits instead of dried dates and figs.
Last Monday night, I went out with my friends with DH and DS at Gardens by the Bay. It is one of the tourist attractions here in Singapore. We had dinner there and watched the light show. It was a lovely evening and we had lots of fun.
Tomorrow I am going for my chemotherapy#6/12.
Best regards,
Lou
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Hi Rhonda,
I am hoping for your speedy recovery!
Before my mastectomy, I was very scared. I didn't know what to expect. I never had surgery prior to BC.
After surgery, I used a lot of pillows to sleep in upright position as I find it the most comfortable.
I was discharged from the hospital a day after my surgery with a drain. I monitored daily the drain and after a week the drain was removed and the bandage from surgery as well.
A Lymphedema Specialist also taught me how to exercise to regain mobility of my right arm. There is still some numbness from the incision but mobility is back to normal and the scar is barely noticeable now.
Best regards,
Lou
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I am out of surgery and the doctor believes she got
Everything.So relieved and hungry.Eating crackers and drinking juice.
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Hello Rhonda,
Thinking about you. Lots of love and hugs. Little busy this week.
Lots of love to all. Nimima
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Hello Lou,
I just wanted to let you know that I am thinking of you as you go through your next round of chemotherapy.
Fond thoughts.
Sylvia xxxx
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Hello Rhonda,
I was so pleased to read that you are over your surgery and are doing well and that your consultant is happy with everything.
Keep in close contact and let us know what you have to do next. I would think they will be showing you how to do some exercises.
Fond thoughts.
Sylvia xxxx
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Hello Lou,
I wanted to say thank you so much for those awe-inspiring photographs. I was interested in how you made your almond drink. It sounds really healthy, Let us know how you get on after your chemotherapy.
Fond thoughts,
Sylvia xxxx.
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I was discharged at 930,The physical therapist showed me the exercises and she was really pleased with my range of mobility.I am waiting for my husband to pick me up,traffic in NYC.I feel great!I am so relieved and it wasn't like I expected.My incision looks good.They took more lymph nodes than they expected but feel good
About results
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Hi Rhonda,
I am so happy for you.
I am not sure if it will help but for me that time, I didn't eat meat during my recovery and I healed very fast.
Take care of yourself.
Best regards,
Lou
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Hi Sylvia,
I finished my #6/12 today. I am so happy to be halfway done.
I stayed on an extra 1 1/2 hour though because the nurse forgot to on my Carboplatin drip so while I was napping peacefully it was only Saline running in my drip. On the good side, I am extra hydrated today.
After my diagnosis, I decided to go back to basic as can be. There was no breast cancer from both sides of the family. My diagnosis was a complete shock to me.
My maternal great gandmother and my grandmother both died in their 90's. Aside from going completely blind, they were in good health. My grandmother's 2 sisters also died in their 90's and 1 is still alive almost 90 now and in good health.But sad to say, my mother died at 59 only due to hypertension about 2 years ago only.
I am trying to do my best to eat a good balanced diet now. I am reading a lot and keeping myself informed. My weight have been stable so far between 42-44 kg. I do give myself a treat once in a while though but I am eating a lot of fiber to balance it
Best regards,
Lou
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Hello Rhonda,
I was so glad to read that you have already been discharged. I was also glad to know that you had seen the physiotherapist and that she had gone through the exercises that you need to do. I remember that, after my own mastectomy of the right breast, the physiotherapist came early the next morning and showed me the exercises I had to do. They are so important for mobility and to try to keep lymphoedema at bay. I bet you were so glad when your husband arrived and you you will both be glad to be back home.
Since you were discharged so quickly, I am assuming that you have gone home with the drains still in. will you have a nurse calling in to deal with these on a daily basis? I was in hospital for five days after my surgery and when I left the drains were clear and a nurse removed them. At that time I was given a softie to put in my bra on the right side where my breast was missing. I wore it for quite a time until everything was healed and then I was fitted up with a lightweight prosthesis.
I think in the UK now women are sent home much sooner after surgery.
You must be feeling very good at this moment with this behind you. When you feel like it can you add this to your profile so others can follow your treatment.
Can you remind me whether you are having radiotherapy.
Wishing you all the very best.
Sylvia xxxx
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Hello Lou,
I was so pleased to read that you have now completed treatment 6 of your chemotherapy. As you say, you are halfway there.
That was awfully lax of your nurse to forget to put the carboplatin in and so you had just saline running through your drip. It must have seemed a long time to have to have one and a half hours extra!
I was interested to read about your grandmother and your great grandmother and that they both died in their 90s. I was also interested to read that there was no breast cancer from both sides of your family. Are you counting the male members? Remember that breast cancer can come through the male line. You do seem to have longevity in your family and that is good. I can understand how a diagnosis of breast cancer came as a shock to you. It does shock us all I think. I have just my maternal grandmother who died of metastatic breast cancer about 70. So far I seem to be the only other female in the family that had breast cancer. The consultants call this a rogue case, meaning that it is not genetic. I do not know your age as the younger you are the more likely it is to be genetic, or so we are told.
I can tell that you are trying very hard to eat a balanced diet and that is good. I think the more basic and simple the diet, the better. This evening I had some pan fried wild Pacific salmon (in olive oil of course), with a mixture of sweet potatoes, celery, cauliflower, red onions and some cut up fresh ginger. I sprinkled some kelp over it and also had a good serving of sauerkraut, which is supposed to be good for a healthy gut.
It is good that you are keeping your weight stable. It is also good to eat a lot of fibre. I think you are doing a really great job in every way, so congratulations on that.
You are certainly entitled to a few treats. That is a treat for you? I like 100% dark chocolate. The best I have found is Montezuma brand.
I was wondering whether English is your second language, as I remember it was for Gina. You write really well.
That is all for now. Keep in touch and let us know if you have any problems after this sixth infusion of chemotherapy drugs.
Fond thoughts.
Sylvia xxxx
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Hi Everyone,
I was inspired by Sylvia's garden pictures, and wanted to share one, too. This is springtime in Fullerton, CA. There are a lot of beautiful flowers around, but this was the only time I took a picture.
Mary, Tony Bourdain's most recent show is called, "Parts Unknown," on CNN. It has been evolving in different versions, on different networks, but this one is by far the best. As far as the time change goes, I only like "falling back," which gives us an extra hour one day a year. I need an extra hour every day, honestly, as I'm sure we all do!
Rhonda, I'm wishing you swift healing.
Lou, Congratulations on being 1/2 done! It will be behind you before you know it.
I'm doing really well, and my skin has healed so that I am able to wear my breast forms over t-shirts and then under shirts. I also ditched my wig, and go to work with a "boy cut," which the younger girls compliment. Life is so strange.
I'm planning on going to a reconstruction workshop soon, and hoping to get some options that I like. I have my 3 month oncology follow up this Tues.
Happy Springtime!
Pam
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Hi Sylvia and all,
I have to deal with the drains myself.I just did it for the first time and it wasn't too bad.Pain is not bad and I haven't taken anything more than a stronger version of Aleve (ibuprofen) since I left the hospital.I will try and update my profile but I am not sure how to edit it.It feels
Good to be home.
Rhond
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hi Sylvia
Bad day today very teary! Still having the creepy crawly feeling in my shoulder back and hip and I'm thinking worst case scenario all of the time! Routine scans aren't recommended here post treatment and my surgeon keeps say that I'm doing really well and being stage 1 grade 2 my risk is small and that I'm only 10 weeks post chemo but that's not helping my terror! I should be getting on with my life but finding it very hard! I have been pretty good but today is a really bad day! Just sooooo scared!
Great to hear u are doing well Rhonda! That's fabulous news! I hope everyone is doing well and that
My mood improves soon
Cheers
Kat
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Hello Pam,
Thank you for putting that lovely photograph on or thread. I am sure it cheers us all up. That blue sky against the beautiful colour of the tree is heart warming. Here in Exmouth today we have grey skies and rain.
It is good to know that you are doing well and that your skin has healed. Wearing your breast forms over t-shirts and then under shirts must make a big difference for you.
I am sure you look fine with your different haircut.
Let us know how you get on when you go to your reconstruction workshop soon. All information you can provide will be helpful to others.
Let us know as well how you get on with your three month oncology follow up on Tuesday.
I was wondering whether you had had any news from Marias. She was so active and interesting on the thread and now she does not seem to be posting anywhere. She was going through chemotherapy so I hope she is alright.
Fond thoughts.
Sylvia xxxx
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Hello Rhonda,
I was surprised to know that you are dealing with drains yourself. I was glad to know that you managed alright. What happens when you have to have them taken out? I remember when the nurse removed mine in hospital, she told me to take a deep breath and hold it while she removed them. Like this I did not feel anything.
It is good to know that you are not having to take any strong painkillers. I had no pain at all post-surgery.
I think to do that editing, you have to go to the top of the page where it says My Profile, click on it and then it should be self explanatory.
Keep up all the good work you have been doing.
That is all for now. I have to go to do some shopping and it is probably going to be busy because it is Mothering Sunday here this weekend.
It is also when British Summer Time begins and we have to put the clocks forward Saturday night.
The country here is in the shock after the terrorist attack in London on Westminster Bridge and outside the Houses of Parliament.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
I was sorry to read you are having a bad day and that you are upset about the creepy-crawling feeling you have in your shoulder, back and hip.
I would think that if your surgeon had concerns, he would order a scan. Perhaps the person to see about this is your oncologist rather than your surgeon. It is always better to be safe than sorry.
You must remember that it is early days and it takes months even years to recover from all this terrible treatment. Sometimes you have to learn to live with side effects that do not go away. I am doing this with peripheral neuropathy in the feet and somehow I have learned to live with it. I also think that my chemotherapy treatment has worsened my gum problems. Bear in mind that I am just three months away from twelve years since diagnosis.
All I can say is try not to worry but for peace of mind see your oncologist or even your GP. Cancer survivors do not need the stress of being worried about things. Stress is very bad for us. If all else fails, go for counselling or relaxation sessions.
Why not go for some short relaxing walks and take some photographs of autumn where you are.
Thinking of you and sending you fond thoughts.
Sylvia xxxx
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HI, Rhonda,
It is so good to hear that you are finished with surgery and happy with your results. I did not have a lot of pain afterwards either, I think I only took one pain pill out of the bottle. Thinking of this occasion did bring back the memory of the day I came home. My husband was ill and was home alone on the one day and night I was in the hospital. His son stopped in to check on him, all was seemingly well at that time. The home-health nurse had stopped by and was there when I was brought home; she was looking at him and said she thought he needed to go to the hospital! So I walked in the door, and within an hour she had taken him out the same door, to the hospital where he had to have fluid removed from around his lungs.
I had to deal with my own drains, my friend who stayed the night with me woke me up at 4 AM to drain them because I was on a timetable. It's doable, and I managed till they were taken out, but it sure would have been nice to have been treated like Sylvia and been cared for a little more! My surgery was one day, the next morning at 6 AM the exercise therapist came in, woke me from a stupor, and wanted me to learn the exercises I needed to do. Then I was rushed out before I had my breakfast chewed! I thought it was not well handled at all, how they expected a person to remember all the lessons about drain emptying, and proper exercising in that very short length of time right after a surgery was beyond me, just crazy. I have since complained, for all the good that does.
It is very good news also that your surgeon got clear margins around the tumor! Now you can rest up and heal, Rhonda.
Talk to you soon! Mary
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Hello Sylvia, what a pity not to have written before, since February 27th day of the last chemotherapy fac, I have been with headache and photophobia so I have not approached the computer.
The tumor has not grown, was reduced only a millimeter, anyway the protocol I follow now are 12 sessions of taxol. I have felt a lot of heat in my hands and feet.
I hope they are all very well, and I am sorry I can not read what they have written and how they have been, when I feel better read it again, a hug and good health for all
Abrazos,
Marias
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Hi, Lou,
Congratulations on being halfway finished with treatment! Every milestone is important.
Too bad about the nurse forgetting your Carboplatin! During one of my treatments my nurse pushed in the Benadryl quickly instead of dripping it, and I had to deal with involuntary leg movements for a couple of hours, very uncomfortable. I guess they just get in a hurry sometimes, it shouldn't happen though.
As Sylvia said, it sounds as if you have good genes, just get through this thing and you'll be on your way to 90!
It's too bad we're not as informed about cancer before we get cancer, right? I have learned so much, but when I was diagnosed I knew nothing. Not even how to choose a good doctor.
Take care of yourself, and keep eating well. Sounds like you don't weigh much at all.
Talk to you soon, Mary
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Lou,
I just wanted to tell you I didn't have radiation either, my first MO said I didn't need it; he retired and then the next doctor consulted the radiation oncologist and he thought I should have it, but didn't have to. I was in so much pain at that time I opted to not have it.
Can't remember if I told you this already, in case I already did, sorry!
Mary
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Hi Sylvia,
No breast cancer history in my male relatives. My maternal grandfather died from a heart problem while my paternal grandfather with lung cancer but he was a smoker. I am 39 when I was diagnosed so they are alsothinking it could be genetic.
Your dinner sounds simply delicious.
When I feel good, I eat as much as I can to put on weight because when I don't feel good, I barely eat anything.
My treat right now is not healthy yet because I eat it when I don't feel so good, ice cream. But DH did buy dark chocolate with almond and I really liked it. I'll try to find the brand you mentioned maybe it is available here because a lot of things here is imported from other countries.
Yes, English is my second language as well. In Philippines, we learn English from kindergarten until university, both reading and writing comprehension. But it is in Singapore that I learn to speak fluently because it is widely used here. I do have to adjust a little because Philippines is American English while Singapore is British English.
Pam - Thank you. Love the flower photo.
Best regards,
Lou
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Hello Marias
I am so glad to see you back on the thread and to know that you are alright. I can understand why you have been off the thread because of the photophobia problem and headaches. I do hope you will soon be feeling better.
I think it is quite common to have hot and red feet and hands during chemotherapy. It was my hands that I noticed the most about redness and heat. Even now, nearly 12 years since diagnosis the palms of my hands can suddenly go red. Why not ask your oncologist about it?
I do hope all will go well with the taxol. Weekly infusions seem to be easier.
Look after yourself and know that we are all thinking of you.
Sylvia xxxx
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