Calling all triple negative breast cancer patients in the UK
Comments
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Sylvia,
Best wishes for a good doctor visit, I am very interested to know what goes on there. It seems to have really dragged on, since you have been dealing with this from October to now!
I also very much like the kimchi. The raw sauerkraut is good, but I much prefer the way my German aunties made it when I was a child, cooked with potatoes and bits of meat. But I do keep a jar of the fresh stuff in my fridge. I have not had tempeh. I believe it is quite salty and I tend to steer away from very salty tastes.
I only knew one other woman here with TNBC, she was diagnosed slightly before me,and has since passed away. However, she had mets to the lung at the time of diagnosis, which gave her a more grim prognosis.
Talk to you soon, love, Mary
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To all
Some of us posted the story of our cancer journey some years ago on this website. I have not been able to find mine back, Sylvia had expressed interest in finding these posts back but I cannot. I will post mine here again, or as I remember it.
In December of 2013 I was, I thought, a healthy 61-year old woman. My husband was not in good health, and was 63.
I had a mammogram in September 2013. On December 29, 2013 I had an annual check-up with my gynocologist. She did a full physical exam and pronounced everything looked good. Proceeding to January 2014, my husband had to make another emergency room visit and had another hospitalization in the first week of that month. On or about January 20th, I noticed a lump in my breast. I called my gynocologist and was given an appointment for a week later. I was worried, of course, and impatient. 2 days later I took my husband to see his hematologist, who was also an oncologist. While there, I mentioned my lump to the doctor and he asked if he could see it. He did examine it, and pronounced it to be of concern. He sent me for a mammogram immediately, and after that a biopsy was set up for the next morning. The next morning was Friday, I had the biopsy and then had to wait over the weekend for the phone call for the doctor. He told me it was positive for cancer, and then other appointments were made, with the surgeon and with the radiation oncologist. Somewhere in here I received my diagnosis of TNBC, even though every doc I had seen throughout the process so far was telling me I probably had E+BC. By this time, I was in a fog of panic and some disbelief, and still I had my husband's ill health to keep in mind. When I met with the surgeon, she offered a lumpectomy, and I agreed with that. Later her office called and said a double mastectomy and reconstruction was her recommendation for me, after she learned I had TNBC, and the tumor was larger than she thought, and my breast was small.. I had already gotten a little informed about breast reconstruction and knew that it is necessary to have a lot of downtime, and people to help you for quite some time. I did not have that available, and couldn't imagine being laid up for that long while my husband was so ill. . So I opted to only have the affected breast and lymph nodes, if necessary, removed and to not have reconstruction.
This surgery was done very soon after, and I was in the hospital for one night and then sent home. The home health nurse was with my husband when I got home, and she said he needed to get to the hospital to have fluid removed from his lungs. So I came in the door, and he went out, the nurse drove him to the hospital. He ended up in Intensive Care, and 2 days later I drove up to sit with him. He came home about 4 days later, and I don't have much memory of suffering much from the mastectomy, it seems like I had a quick recovery looking back.
Chemotherapy started soon after. There was some discussion by the doctor about giving me the Adriamycin and Cytoxan together first and then following it with 12 sessions of Taxotere. He then decided to give me 6 sessions of all three drugs together. I must interject here and say that I was not as well informed as some of you were before treatment, I was in a dumb panic and just wanted to get everything over with as soon as possible. In hindsight, I probably should have had a second opinion, and I should have taken a little more time. I did know enough to know that the 3 drugs I was going to be given were the ones usually given to women with TNBC. I had no clue that I could choose my own dosage, as did Peter and Liz.
I remember at one point during my first infusion, the nurse left the pharmacy papers on my table. I was looking at them and noticed that on top, where it said dosage, it was described as "high". I questioned that and the nurse stammered out some non-answer and grabbed the papers, and I never saw them again. I felt quite washed-out afterwards and they told me to come back the next week to have my blood tested to see how my counts were. I went home and resumed life, but instead of feeling better over the next week, I felt worse and worse. About 5 days later, I could barely get out of bed. I called them and they said to come in and get fluids, I was probably dehydrated. So I did, but the next day I was much worse. I remember getting up and getting my husband's pills for the day and I was barely able to stand. I got the thermometer and laid down, and took my temp. It was 101.4, so I called the doctor's office. She told me to come in right away, and then called back and said to go to the Emergency Room. I called my friend, and off we went. When I got there I basically blacked out, and stayed that way for the rest of the day and the next day, while receiving heavy doses of antibiotics. The day after that, they started giving me the neupogen shots because my white blood cell count was .03%, after that I got stronger quickly, and after a bad day of diarrhea, they sent me home about 5 days later. Meanwhile my MO had gone on a month-long trip to Japan right after my first infusion, so I had a string of docs I didn't know making decisions. I felt better again after I got home, and only noticed in the last few days before my next infusion that my feet felt funny, as if I was walking on little puffy pillows. Little did I know then, but it was the beginnings of the neuropathy I am bothered with now.
After that, I was given the Adriamycin and Cytoxan together, and then the Taxotere on its' own, and had no such repeat incidents, although I had many unpleasant side effects. I do believe though, that the first large dose of all 3 drugs together is what has damaged so many parts of my body. It was just too much for me. While I was moving through all this, I was getting more educated, and I think my doctor was not very experienced with TNBC. He seemed puzzled with the litany of side effects I would tell him about as I moved through my treatment, and he couldn't understand why I was losing so much weight and having problems. He did reduce my Taxotere dose further later on in treatment, and he retired on the day of my last infusion, and then I had to start my post-chemo journey with a completely new doc. This was a jarring experience the first time I had an appointment with her, she walked in and told me I had not done enough chemo, and would have to do 2 more treatments of Taxotere. I was in disbelief, and started crying, and told her I couldn't do any more. She and her nurse left the room, and then returned after going over my chart, and said it was allright, I had done all I was ordered to do by my MO. Of course then I asked "which is the correct dose?" The nurse patted my shoulder and said "Every doctor has different protocol."
While I was in my last month of chemo, I had injured my right shoulder, it turned out to be a rotator cuff partial tear and a bicep tear. It was causing searing pain with any activity. A few weeks after I completed chemo I heard from the Radiation Oncologist's office, they wanted to put together a plan for my radiation treatments. I told them that my original MO had told me I would not have to have radiation, and they said they would discuss my case with a panel of docs and let me know. I told them about all the surgery-side arm and shoulder pain I was already having. They called back in a few days and told me that they had decided that the benefits I might receive from the radiation would probably not be worth the further pain it might cause me, so I would not have to receive it. Truthfully, I was so tired of everything by this time I might have refused it anyway. Right decision or wrong, I don't know.
During all this time, my husband was in and out of the hospital, I would sit with him there every day I could. He passed away about 6 months after I completed chemo.
I am much more informed now, and I tell anyone who asks to get to the best Cancer Center you can get to if you have cancer, and become informed, and ask many questions. We don't know much about cancer when we haven't had it, or been close to it, and trying to get smart when you find out you are stricken is like a race with time. I was told from the beginning the cancer I had was very aggressive, and I knew that to be true because it was not there at the end of December and was palpable less than a month later. I did have many sets of eyes that looked at my September mammogram and they all agreed that there was indeed nothing there at that time. Thus I had a feeling of such urgency, which may or may not have been entirely justified, but I did the best I could with the knowledge I had and the situation I was in and I would also add that I knew many other women who went to the Cancer Center I did, and they did not have all the same problems I did. Some had other problems, and some had no issues at all other than hair loss, fatigue and so on. Almost all were E+BC.
Now I have joint pains, and neuropathy that is mostly in my feet and legs and causes weakness, pain, tingling and burning. I cannot walk long distances as I used to do. I get a good massage regularly, and do acupuncture on a regular basis, I look at these things as necessary maintenance. I do as much physical exertion as I am able, and eat as well as I can.
Mary
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Dear Sylvia and Mary
Thanks so much for the thoughtful replies. I will respond later. Short note: Hubby is a lot better. I have avoided the dreaded flu this time.
More later
Val
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Hi everyone
Hope u are all well. Just a quick query how often do u ladies have blood done post treatment? My onco doesn't feel they are required routinely. I'm terrified at thought of having more done and as I said my globulin was elevate last time 3 months ago and it has been for the past 6 months. Onco not worried and says my rheumatoid can cause that .All other bloods good and I feel well . Wish I hadn't had access and checked them. At this stage I want to push for 6 monthly bloods. What does everyone else do? He doesn’t routinely do tumour markers either.
Cheers
Kat
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Kat - I do not have tumour markers or scans done routinely. My MO said it is not necessary. She said that if I wanted blood tests done I had to go to my family doctor for a requisition. So, that is what I do - once a year, I ask for a CBC, Vitamin D levels, and any other tests that I feel necessary at the time. It is never a problem getting the tests done. I have had a brain scan done for random headaches, a ct scan of my clavicle because of a lump (synovial cyst), a bone scan done for bone pain in the coccyx. More recently I asked for liver function tests because of the intense itching I have been experiencing. Of course I have had annual mammograms since my diagnosis - but after my next one, I think I will only have them done every 2 years. If you feel better having your bloods done every 6 months, then do it - for me once a year seems about right. This is if there are no other problems arising of course, if something comes up, then further tests would be appropriate.
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Sylvia - was thinking about you today and your further surgery. Looking forward to hearing how things went for you. Wishing you a swift recovery.
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Hello Mary,
Thank you for your best wishes. All went well yesterday. I now have to take it easy and wait to get the stitches out on Friday. It has all been a long time since that flu jab on October 10th. I shall be glad to get this surgery healed as I want to concentrate on trying to get rid of the lymphoedema for which I have an appointment on March 7th.
I think I am going to buy some kimchi just to try it. I was interested in what you said about sauerkraut, as I do remember having it served up as a main meal when I lived in Toulouse, France. It was hot and served probably with potatoes and some kind of sausage special to Toulouse. How do you think this 'choucroute' was cooked? Can you cook fresh raw sauerkraut and still maintain its probiotic goodness?
Tempeh is not salty. It is fermented soy and comes in a square pack made up of little squares. I cut these squares and stir-fry them in extra virgin olive oil, along with a mixture of vegetables. I try to have red onions, cut up small, along with leeks as prebiotics and then add what I feel like, such as small tomatoes, mushrooms, chickpeas etc. with some herbs and kelp.
It is miso that is salty. It comes in a jar and can be fermented soy and brown rice or fermented soy and barley. It is like a paste and you can add just a teaspoon to anything you like. I add it to soups and stir-frys or just put it in a mug and add hot water. It is an energising drink.
I was interested to see that you have posted your breast cancer journey. You should be able to find the original one by going to All topics and clicking on Stories from around the world.
I am going to try it again. I remember looking at it a long time ago and my story was there with yours and Hanieh's.
Keep making progress.
Love.
Sylvia xxxx
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Hello Mary,
This is what you do to find your original story.
1. Go to the main page of breastcancer.org.
2. Go to Get involved, Members stories.
3. Go down the page until you find From around the world.
By the way, I had a PM from someone wanting to know about healthy eating. She was eating healthily but has now relapsed and is not eating healthily. It would be good if everyone could post in to say what we are eating. I have given brief details of what I eat and say that we all seem to believe in the Rainbow/Mediterranean Diet and what Chris Woollams of Cancer Active says.
Of course, I do know that with cancer there are no guarantees. There are multi risk factors and we can only try our best to help ourselves.
Love.
Sylvia xxxx
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Hello Kath,
Thank you for your post and sorry to hear you are having so much worry.
After I had finished my treatment, I had no blood tests at all. I just had general physical check ups, first of all every three months, then every six months, and then once a year.
Obviously, if you are seeing your GP, they might want to take blood tests for things such as blood glucose levels etc. but you make the decision about this. I do not have any blood tests taken by my GP, because I feel that these blood tests are taken in order to medicate as many people as possible. I have not had any blood tests at my GPs because I am not going to take any medication for any reason. I believe that my body with my help will help itself.
I hope this helps and puts your mind at rest. Perhaps other people on the thread will have different opinions.
I shall not be taking pills and enriching the pharmaceuticals but that is my opinion. My best medicine is my food.
Take care, Kath.
Love.
Sylvia xxxx
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Hello Kath,
I forgot to say that I have never had any tumour markers done. My oncologist told me they were of no use. I have not had a mammogram since about 2014 and do not intend to have any. I do my own breast test once a month.
Love.
Sylvia xxxx
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Hello adagio,
Thank you for your kind words. All is OK today but the surgery is pulling a bit more than it did first time around. I shall just follow instructions and hope for the best. I am a bit fed up with it all but cannot fault the medical team that looked after me yesterday.
While waiting I had a good walk round the corridors rather than sitting in the waiting room. I did a lot of reading of noticeboard information. I was dismayed to read on one of the noticeboards that breast cancer treatment can debilitate 75 to 95% of patients! I was also surprised at the damage that can be caused by radiotherapy.
I was very impressed at the notice about MacMillan Cancer Support in Exeter. They do an amazing amount of work.
I took particular notice of The Exeter Lymphoedema Team.
"Comprising four team members, the service assess, treats and supports people experiencing swelling caused by a build-up of fluid in the body's tissues. Lymphoedema can be caused by cancer itself or develop as a side effect of its treatment. It can be the result of:
- surgery to remove the lymph nodes
- radiotherapy to the lymph nodes
- cancer that has spread to the lymph nodes or that presses on the lymph vessels.
The team can help with compression treatments with garments and/or multilayer lymphoedema bandaging, skin care and exercise."
I am sure there are lots of patients with undiagnosed lymphoedema.
I am not sure how the specialist diagnose lymphoedema and whether the swelling has to be confirmed as such according to pre-established figures (very much like blood pressure, blood glucose levels, etc.).
I hope you are feeling better.
Love.
Sylvia xxxx
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Hi, Kath
I never had tumor markers done. When I asked, I was told that they are not dependable when working with BC. I do know women that had tumor markers done, and most of them will say their numbers are high but there is no evidence of anything, it seems to me it just causes unnecessary worry. The tumor marker system does seem quite helpful when one has known tumors, and is checking if they are growing or not. My brother-in-law would have those done to check the size of the tumors on his liver.
I get routine blood tests done once a year. Like Adagio, my MO does not do it, my GP does it and checks Metabolic panel, CBC, and any other tests I would like to have done. Also like Adagio, if I have unexplained pain, one of the doctors will order a scan.
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Sylvia,
I'm glad that step with your arm is finished, and now you just have to wait to get the stitches out. I suppose everything looked okay when they went deeper into the surgery site, will they do another biopsy?
When you go to get some kim-chi, be careful of its' heat level. It comes in mild, medium, or hot. I prefer the mild one. The brand I have right now is Jo San.
Unfortunately, cooking sauerkraut does destroy the probiotic power. When I was a child, I remember the adults chopping cabbage and layering it with salt in large stone crocks. They would cover this with a lid, and let it ferment, this method was for making large amounts of kraut. Once it was done fermenting, they would pack it into jars. I imagine it had the probiotics until we cooked it before eating When I was a little older, my grandmother showed me how to make smaller amounts of kraut quickly. We would chop the cabbage as fine as we could, and then put a handful of salt and work it with our hands until it had formed a lot of liquid. Then we would pack it into jars right away and seal it. I guess we did heat the jars to seal them, if we would not have heated it in the jars it might have exploded.
It is still eaten often around here. People cook it with navy beans, and sausage or pork ribs, and potatoes and onions. Some people add sugar to it while cooking. I have tried that and it is very tasty, but like all the cooked versions, has no probiotic power.
I will have to look for the tempeh. I have bought the tofu, but gave up on it, the blocks it comes in are too large for me and I end up throwing much of it away. I would like to try the tempeh dressed up for breakfast maybe, I find if I don't eat some protein for breakfast I am hungry again an hour or two later.
I have seen the Members' Stories on the main BC.Org site. My story is no longer there, though yours still is. I suppose they had to weed some out, and wanted to keep as many different countries represented as possible.
Have a relaxing weekend!
Love, Mary
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Hi Sylvia, Mary and all
Sylvia I'm happy you are done with your arm mole. I hope everything goes well. I just wonder why you had to go deeper. Do you need any further treatment?
Mary, how are you. Is your flue getting better? Thank you for sharing yoyr breast cancer story with us. Im deeply happy you passed all that hardship. I hope you never face such gloomy days in your life.
My daughter also showed the onset of a cold today. It was really sudden as an hour before she was doing well.
Now I m having an appointment with my surgeon and as I have a two hour wait, I decided to come to a coffee shop. It's a far better place than the depressing wait at the doctor's. I'm alone here and it's been a long time since I was alone in such a place. I should say I sometimes miss myself. It may seem trivial but I really miss my old self with hair. These days mirrors are the most depressing to me. I'm somehow scared of taxtore small chance of permanent hair loss. If only days and weeks ran faster!
I have two more shots. My fifth shot will be in 12 days. Our new year is coming and I have to do the spring cleaning too. In fact cleaning is what always gives me positive energy. May the spring brings better days.
Love
Hanieh
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Hello Mary,
The skin saga has not finished. They will now do a biopsy to make sure everything is clear. They are expecting it to be clear, but you never know. There is now four weeks wait but whatever happens I am not going on with this.
I do not think I had the mole before, and it has probably come up after cancer treatment. I had not taken much notice of it. It seems that it may also have been activated by the flu vaccine which to me must have set off the lymphodema. I do not suppose I shall ever get an answer. I did ask the specialist nurse how deep she was going, and said I knew the skin was divided into three layers, epidermis, dermis, and hypodermis, but she just she was just going down to the fat.
Thank you for the information about sauerkraut. I shall just have to continue to eat the fresh raw version.
As for tofu, I know what you mean about the boxes being too big, but you can buy a small packet of fermented tofu that would be ideal for you. Stir fry it just like the tempeh.
I also feel the need for protein in the morning and often have organic eggs on toast and/or peanut butter. I have recently added a little bit of French goat log cheese. It is by far the best.
I am having an interesting conversation about hyperparathyroidism and breast cancer on another thread that sam52 started. We became great friends there. You might want to have a look. It is on the thread Parathyroid disease and breast cancer.
Love.
Sylvia xxxx
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Hello Hanieh,
It was so nice to hear from you and thank you for your kind words. I still have to wait for the biopsy with reference to the mole. The first time around they remove any mole that is suspicious and label them dysplastic moles. If the biopsy has suspicious cells that could turn malignant, you have a second excision where they go deeper to make sure everything is clear. They do a biopsy and expect all to be clear and that there will be no further treatment. I hope this is so, but I bear in mind that this mole is on my right arm which is the side of my breast cancer surgery etc.
I am trying not to think about it all too much and just getting on with waiting for the scar to heal etc., so that I can concentrate on the lymphoedema.
Thank you for the photograph. I think you were right to go to a coffee shop rather than sitting in a waiting room to see the doctor. I did the same yesterday and went for a walk around the hospital, mainly in the lymphoedema section where there were lots of notices from charities such as MacMillan Cancer Support which appears to do a lot of good work. I am appalled at all the damage that cancer treatment causes us long term, even if the treatment journey is not too bad.
I do sincerely understand what you mean by saying I sometimes miss myself. I find that about myself and I am not going through treatment like that.
Tell yourself that you are going to get through this and you will get your hair back. When I was going through treatment I did not like being bald, but I used to take great care of that baldness and used to massage pure avocado oil into it before washing it. I used baby shampoo at that time, but there is now a special organic shampoo that can be used. It is Dr Organic Rescue shampoo, conditioner and restoring hair and scalp treatment. There is also a separate weekly treatment. I am going to try and scan it.
Keep looking forward, Hanieh. This ordeal will soon be over and you will get back to normal.
Love.
Sylvia xxxx
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Hello everyone,
As a result of my wandering around the Lymphoedema Department and the Dermatology Department, yesterday, instead of sitting the waiting room, watching patients frantically staring at their smartphones, I picked up quite a lot of information on various notice boards. I wrote down a few. One was RAGEUK.org. I think you will find it interesting. RAGE stands for Radiotherapy Action Group Exposure and it has four aims and objectives. Have a look at it if you want to be informed.
I liked the famous lines from a Dylan Thomas poem – Do not go gentle into that good night, Rage, rage, against the dying of the light.
https://sites.google.com/site/rageukpage/home
Best wishes
Sylvia xxxx
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Hola Marías,
Estoy muy preocupada porque no he tenido noticias tuyas. Estoy segura de que otros en el hilo sienten lo mismo. Tú eres nuestra querida amiga.
Por favor, publique aquí o envíe a una de las mujeres en el hilo un mensaje privado para informarnos que se está recuperand bien de su tratamiento.
Abrazos.
Sylvia xxxx
Hello Marias,
I am very concerned that I have not heard from you. I am sure that others on the thread feel the same. You are our dear friend.
Please post on here or send one of the women on the thread a private message to let us know you are recovering well from your treatment.
Abrazos.
Sylvia xxxx
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Hello everybody! It has been 4+ years since I was first diagnosed with Triple Negative Breast Cancer. I have been wanting to come back and encourage anybody who needs support as I have received tremendous supports here years ago. Hope everybody well.
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hello
Did u have rads as well? How are u feeling?
Cheers
Kat
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Hello Jianchi,
Thank you very much for popping in to say hello to us all and to give some support to others.
I was very glad to read that you are now four years out and doing well.
Did you have any long term effects from your Taxol treatment. The two taxanes, Taxol and Taxotere, do seem to take their toll on patients.
I saw that you did not have radiotherapy. Was this because you had a small tumour, stage 1 and no nodes affected.
Did you not have any surgery?
Wishing you all the very best.
Sylvia xxxx
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Hi Hanieh
I don't think you have to worry about your hair coming back, I think it will come back as thick and pretty as ever. You even still have your eyelashes, so you are doing good. And since you wear the hijab away from home, nothing shows to a casual observer. You look very well, as pretty as ever, and with good color.
I do believe my flu is finally getting better. The late and lingering symptoms were fatigue and weakness. That is finally passing, and I feel stronger. I despise feeling so weak, so that makes me happier.
The sun is going to be shining today after a week of rain and cloudiness, that will also help state of mind.
I'm sorry about your daughter feeling ill suddenly, that is how my flu came on, one day I felt fine and the next I was coughing nonstop.
I know what you mean about missing yourself, I think sometimes that as we move through life and realize all the things that can happen, it makes us aware of how fragile this life is. I think it cannot help but make us a different person, and it takes time to get used to that new person. But it also makes us more empathetic, and stronger, and more aware, and we will just have to try to be the best new person we can be.
How nice that you enjoy spring cleaning! I am not too wild about that, as I sit here I look out 2 windows and when the sun is shining I notice how badly they need cleaning! I'm glad you enjoy it, it is good exercise too and will tire you out so you can sleep. I hope you are doing okay keeping up with your classes, and helping your mother, nursing your daughter and all the things you do every day.
So you only have 2 shots left to go, it won't be long and you will be finished, These days and weeks will pass and then one day you will find yourself thinking, "Oh, time is passing much too fast!"
I hope all went well at your surgeon visit, thanks so much for filling us in on what's happening with you. I think of you so often and wish you very well. I am going to go to church this morning, I have missed it for 3 weeks because of being ill, and on one of those Sundays everything was solid ice. I did hear later that there were 5 people that did brave the icy roads and attend that day. I'm glad you are still finding hope and inspiration listening to Joel Osteen.
Talk to you later, Hanieh! Love,
Mary
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Hi, Marias
I join Sylvia in saying I hope you are doing well, and beginning to feel better. You have been through so much through all these months. I will light candles again in church this morning, one each for you and Hanieh, and one for all the rest of us.
Hope to hear from you when you are up to it!
Love, Mary
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Happy Sunday Everyone,
Peter, When I read your thoughts on recurrence, I was convinced again. I think that In some ways, a breast cancer diagnosis is harder on the caregiver than it is on the patient. It's one thing to learn what you can handle, and what is doable physically and emotionally, and another to imagine it, and imagine life without your partner. It's such a tremendous piece of this experience that doesn't get the attention that it should.
I was also struck by your travel plans that avoid Disney. Good for you. I always feel so alone in that we live 15 minutes from the original Disney, and are surrounded by friends, neighbors, and also professors and staff members on a college campus that can't get enough of the place. Many locals buy annual passes and clog up the park by going all of the time. Well, I got enough when I was a child, and don't understand the obsession with the place at all.
Sylvia, About time pressures, I know that when I have time off, I'm busier than I am during a work day. There's always so much to do. So I'm not surprised that you find yourself so productive and useful. I know that I want more choices about how I spend my time every day, so I'm keeping an open mind about making less money and improving my quality of life.
I'm sorry to hear that you have another biopsy to worry about, and also sorry that you had a week that included an overwhelming and sad funeral for a friend. I thought it was so resilient of you to walk around and get information, rather than waiting for your treatment. I wonder if that Exeter team could ever help with your lymphedema at some point in the future.
Marias, I want to join everyone else to say that you're in my thoughts, and that I hope we can hear from you when you're ready.
Hanieh, I have to echo Mary and say that you do look as lovely as ever - including your glamorous eyebrows! If you have to go to treatment, you're doing the right thing to enjoy a coffee shop instead of a waiting room. I hope your daughter is well soon, and that your housecleaning makes you feel wonderful.
Mary, I was so touched to read your story. Thank you for posting it here. I can easily see the sense of urgency that you felt about your diagnosis, and I can also see how divided your attention was. I think we probably all have some regret about treatment, but what you did was so extraordinary. You went through all of that and still tried to keep your focus on your husband. What a testament to the real meaning of a marriage. You may not always feel this way, but your strength is mighty. And now you add to Sylvia's efforts to give back, by contributing here, to this support system.
I'm glad that you're getting over the flu, finally. About mastectomies, I guess we can try to be grateful that our procedures are done under anesthesia these days. I know that my team was almost overly concerned that I would ever feel a moment of discomfort.
Spring is coming, everyone. I'll send a picture of the cut daffodils that I bought, as soon as they bloom.
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Hi Sylvia,
I did have radiation but did not put under my signature. It’s been a while so hope I can gather the information. I recall radiation is much easier. I do not have (at least not am aware of) any side affect from my chemo. I had only surgery to remove the tumor as both my surgeon and my medical oncologist suggest There was no good proof suggesting having more aggressive surgery will benefit me
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Hello Pam,
Thank you for your post. I think you are right to want to make more choices about how you spend your time on a daily basis. Time is precious and life is precarious so we do not know when it might suddenly be taken from us. We have to make the most of each day and spend it in the most meaningful way to us. I do agree, too, that quality of life is the most important.
I feel relieved that last week is behind me. I found it all made me very tired.
My mind is forever very active and I am always questioning what I read, see or hear. I found it very interesting reading all those notices on the board. The person that I see in the Lymphoedema Clinic is also a MacMillan nurse. She is very down to earth and efficient and I like her, which is important. On the whole, I think that patients are really on their own with lymphoedema and that you have to make use of the compression sleeves and above all do your exercises and keep your arm well moisturised. I think appointments with the specialists will be mainly for measuring the arm and will be few and far between.
Thank you for your kind words to Marias. I do wonder what has happened to her.
We are going through an extra cold spell here and we have the usual panic and chaos. This country cannot seem to cope with anything. The panic is all about potential snowfall and if we have some it will probably close the country down. It is in great contrast to Canada, where, despite huge snowfalls, and freezing temperatures, everything carried on calmly.
I do hope you are having a good week.
Love.
Sylvia xxxx
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Hi Sylvia,
I see you are going to mentally move on from the mole incident, I think it's going to be allright, it's too bad everything has to take so long to go through the process. I also think moles come and go on our bodies and usually without notice. On myself I notice them only when they are in an area where I am concerned anyway, and then I find the ones I think are particularly evil-looking are dismissed as nothing at all, and the small spots that look completely harmless are the ones that are being watched by my dermatologist. Right now I have a few scaly patches on my head that are persistent, they are being watched but otherwise I have no idea where they came from or why.
I shall have to look for the fermented tofu, I have not seen it in the grocery stores where I see tofu, kimchi and organic produce. Perhaps I should check the health-food store. I also like the goat-cheese, I found a brand that comes with Lavender and another flavor is dill, called Psychedillic. Very good, and expensive for a small round. But I only eat a little at a time.
I did check out your conversation about parathyroid and the connection to BC. I didn't know much about it, but it sounds very likely. I also remember Sam52 from years ago, I think she used to post here, didn't she? I had trouble finding it, but finally did, but then forgot to mark it as a Favorite, so I will have to go on the Search again!
This week we have finally had some sunny, warmish days. Sunday I was outside quite a lot, and yesterday outside again helping my brother who was helping me with some much-need maintenance chores. Last night I was in a lot of pain, in my knees, shoulders and back. The last 2 weeks+ of lying about with the flu did not help things at all,but only added to the muscle weakness. Now I have to try to get back to whatever I was before, which wasn't super but was better than this! I will do some more of this work today, but at my own pace, which does make a difference from trying to keep up with someone who is on a time schedule.
I did read this morning that London got some snow, I'm not sure how much. I'm sure it did cause chaos in a city that's not accustomed to it. Here we have road trucks that are always ready in the winter to get out and clear roads, but many people are still very nervous about inclement weather, so I'm sure a place that's not accustomed at all is a mess! I also heard about the big explosion that happened about 3 hours North of you in Leicester yesterday, I didn't check this morning but didn't hear much more about it after the initial blast.
It does sound like you are on your own with the Lymphedema care, it does make you wonder what happens to the women who are not as educated as you are about things. I guess that's one of the places where the Internet is so helpful, there can be found step-by-step instructions in how to do the lymphatic drainage massage and other therapies. Can you still tell that your right arm is larger than the left?
I wonder about Marias too, she may be still having trouble with looking at the computer screen but really, there is just no knowing what's going on. We can only hope she's doing okay, and recovering from all she's been through.
I shall talk to you again soon, love,
Mary
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Hello Mary,
Thank you for your latest post. The thread has been very quiet so far this week.
I must admit that the mole problem, along with the lymphoedema, has been very wearing. There seems to be a lot of activity with moles lately and I was reading how melanoma skin cancer was relatively rare but has been on the increase for a while. It seems to be put down to people going off to very hot countries and going mad lying in the sun. I think the mole on my right arm was not there until recently and I keep wondering whether it was anything to do with my cancer treatment. It is on the right arm. Everything that happens to me seems to be on the right.
In the meantime, I am waiting for Friday to get the stitches out so that I can wear the compression sleeve regularly. At the moment the stitched area is quite sore and I have been told to apply Vaseline twice a day this week and once a day next week. With the compression sleeve you have to moisturise the arm the night before and not have anything on the arm when you put the sleeve on. Apparently any cream spoils the compression sleeve.
It is good that you have a dermatologist keeping watch on any moles. They probably know whether they are dysplastic and need looking at and removing. Apparently all these moles are known as melanocytes and are something to do with pigmentation.
I was interested in that goats-cheese with lavender and the one with dill. I have taken, as I said, to eating a bit of goats cheese, the ones that are obviously fermented. It is strange that you should mention dill, because at my last shopping expedition I bought some fresh dill, chopped it up and cooked it with some fish, as recommended. I did like it.
I think it is good for us to keep the thread about breast cancer and parathyroid problems going. I have it as a favourite, so it is quite easy to click on it when there are new posts. I do hope that sam52 may come popping in one of these days. We had become good friends but she suddenly disappeared. She had hormonal breast cancer in 2001 but not HER2+. I also have the High calcium thread as a favourite and it is in the forum Not diagnosed with a recurrence or metastases but concerned. This is where I met sam52 and then she started the other thread. I try to keep an eye on both.
I also like to look at the alternative forum where there are various interesting threads. There are also many threads in the lymphoedema forum.
I have not heard any more about changes to bc.org but I do think fewer threads within a forum might be easier for people.
I do hope you did not overdo things when you were working outside. Just take it slowly and gently.
The snow has not hit Exmouth as yet and I do hope it will miss Devon. I saw in today's paper that Spring has reached Cornwall and this is being based on the blooming of certain magnolia trees in quite a few well known gardens. It did say that the daffodils in bloom in Devon were a sign that it is Springtime. It did not feel like that to me today.
There are about five dead and five injured in that explosion in Leicester. It looks as though it was a shop with a flat above. There has been no further information.
Brexit drones on and the politicians in all parties are playing games.
I do not know what to say about lymphoedema. I still do wonder about the compression sleeves. I do not know if they make that much difference. I shall try my best and do the exercises in the hope of keeping the lymph moving. I have an appointment on March 7th to see the lymphoedema specialist. I want to ask her about whether having had cancer treatment and having a damaged lymph system we are classed as immune impaired.
I think my right arm has been slightly bigger in circumference since I had the cancer treatment. It is worse below the elbow joint going towards where the mole has been removed. The hand and wrist were a little puffy after that flu injection but they are now normal and the same as the other arm.
I think anyone that gets to see a lymphoedema specialist will be shown the exercises and soon learn them. I think it is more important to keep active in general and not to sit about too much.
How are you getting on with the Dental Diet?
Look after yourself and if you have any nice nature pictures put them on the thread please to get us through to Easter.
Love.
Sylvia xxxx
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Hello Everyone, I hope this brightens your day a little. - Pam
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