Calling all triple negative breast cancer patients in the UK
Comments
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Hi, Amanda,
Glad you are feeling better, sinus pain and infection can cause much misery. I am afflicted with these problems too.
As for massage during/after treatment, I think it's only a problem if you have a tumor. From what I have read, it is not recommended to do massage on a cancer patient with a tumor because of the possibility of spreading it. There the question might be; what if one doesn't know if one has a tumor? My massage therapist will not put any pressure on any spot where there is a bruise or any discoloration or break of the skin. I did not have massage during chemo, but do have one now every few weeks. I have not had ayurvedic massage but I bet it is wonderful!
I am glad the cod liver oil helps, I looked it up on Dr. Axe's website, he praises it highly for many things. And he agrees it helps lessen the pain in joints. Sounds like good stuff!
Love to you, Amanda!
Mary
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To all,
Saw an article on Chris Woollams' site, may be of interest to some of you. It is relating to the connection between cancer and stress levels.
http://www.canceractive.com/cancer-active-page-link.aspx?n=2997
Mary
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Hello Amanda,
I was so happy to see you on the thread and sorry to know that you have been under stress and busy at work. I do hope you will be able to find a way of getting some relaxation and switching off work. We all find different ways to do this but we need to do it and we must all learn to avoid negative stress and negative people. I find that laughter is the best medicine for me or just sitting quietly.
I was sorry to read that in addition to this you have had a sinus infection and been in a lot of pain. There is nothing worse than pain in the teeth. You did the right thing to take some antibiotics. We all know that antibiotics are being over prescribed by doctors and demanded by patients when unnecessary, but when they serve a purpose we need to take them. It is so sad that overuse and abuse of antibiotics has resulted in horrible superbugs that are killing people. I read this week that 100 people a week are dying of ecoli. I think that is in England.
Take your time to catch up on the posts. There is always a lot of good information and personal experiences.
If I were you and are keen to have some kind of massage, I would find out what is available at the hospital where you had your treatment, if there is some kind of support charity on site. In Exeter, where I had my treatment, there was a charity called FORCE where cancer patients could go to relax, have a cup of tea and a chat, and also book in for massages. It was mainly aromatherapy, but I think there was also Indian head massage and reflexology. They were available for patients and their carers. I did not have any but Raymond had a head massage and reflexology. He found them very relaxing. The point is to be with a fully qualified person. Where I go to see a podiatrist, these other services are also available and one of the people there doing all sorts of things, such as massage, also volunteers her services at the charity FORCE. You can also get manual lymph massage for lymphoedema.
Why do you think therapists do not want to give massages to people who have had cancer?
Like you, I do believe that medical treatment has to be whole, and especially with cancer, the mind has to be treated as well as the body. A lot of this can be done just by talking to someone about what is worrying you, but in the end you just have to tell yourself that worrying solves nothing and just live each day to the full.
It looks as though aches and pains in the hips and joints is a common side effect of breast cancer treatment. There is no doubt that the toxic treatments, be it chemotherapy or radiotherapy, are very bad for the bones and that we can end up with osteopenia or osteoporosis. A simple DEXA scan for all of us to see what has happened to our bones through treatment should be given to all of us, before and after treatment.
Cod liver oil is a good supplement to take but it is not high enough in vitamin D which is what we all need. I take 5,000 IU of Solgar vitamin D every day.
That is all for now, Amanda.
Fond thoughts.
Sylvia xxxx
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Hello Rhonda,
Please remember to take it easy. You are right to say you must eat more and keep well hydrated. It is very easy, when going through chemotherapy to get low blood pressure, feel dizzy and pass out. This happened to me after my first chemotherapy session of EC. A few days later I was in a shop, felt strange, tried to attract my husband's attention where he was queuing for a bottle of water, when I must have passed out. The next thing I knew was that I was sitting outside a lift, and my husband and a couple were asking me if I was alright. They kindly gave me a bottle of water and eventually I my old self. I have no memory of having been walked out of the shop, taken up in the lift and sat on the floor!
Take care of yourself.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I had settled at the computer to catch up on the posts, but I got interrupted by phone calls so I now have to take a break. I was interested to know that you had found the liquid coconut oil in Walmart. The one I bought is pure and organic and apparently has had just one chain taken out of it. I have had a taste of it and it seems fine. I am not quite sure how I am going to use it.
Like you, I am not sure what to think about coconut oil and the fact that it is a saturated fat. What I have read many times is that it is saturated fat that is the problem with raised cholesterol levels and not the actual cholesterol in food, so this bad fat is in baked goods like biscuits and cakes etc.
I did have a talk with one of the women who works in one of the natural food stores that I go to. I was looking at the jars of solid coconut on the shelves and noticed that organic virgin ones said oil and some others said coconut butter, so I asked why this was. There is a difference, apparently.
She also told me that once opened the solid coconut oil does not need to be refrigerated. It just needs to be kept in a cool place. She also told me that if it gets above 25 degrees C the solid fat will become liquid.
I think that at the moment coconut in all its forms is the latest fad. Whether it will last or not I do not know. At the moment I have the bottle of liquid coconut and a small jar of the solid coconut oil. I think I shall probably use them in my mouth as apparently good for dental problems.
Watch this space, Mary and let us see, also, what the next "miracle" product will be.
I shall write more later. I once again find myself catching up with the posts.
Have you been to vote? Remember, vote early and vote often!!! This election has been unbelievable.
Love.
Sylvia xxxx
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Hello Maggie,
Thank you for your post. I have to take a break but I shall try to answer later on.
Hello Kath,
I shall talk later.
Hello Gina,
I shall talk later.
Fond thoughts.
Sylvia xxxx
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Hello Maggie,
It was nice to hear from you again and I am sure I speak for Mary when I say that we are both only too glad to help.
To post on our thread the easiest thing to do is to make it one of your favourites by clicking on at the top of the page Add to my favourite topics. Like that when you log on in the column to the left where it says My Favourite Topics it will tell you that you have unread posts on the thread.
Under your Profile on the thread, you have already put all the information about your treatment.
If you want to tell us more about yourself, you are quite welcome.
Any posts that have been put on this thread are easy to go back to have a look. You can go right back and begin at page 1 or work through and read any back pages you like. At the bottom of each page there are numbers to click on to get to any other page.
If we can help in any way, just post and let us know.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
I was sorry to read that you have been suffering from pins and needles in your feet and hands today. This sounds very much like hands and feet syndrome which the taxanes appear to cause. If I were you I would get in touch with your dedicated cancer nurse if you have one, and/or your oncologist. The taxanes cause peripheral neuropathy as a lasting side effect, so you should tell your oncologist to see what can be done to stop it going any further. Some women have mentioned icing their hands and feet as a means of prevention.
I was sorry to read that you are also having nosebleeds. This is another possible side effect of chemotherapy. It is something else, that if I were you I would tell the oncologist about.
I was also sorry to read that you are having bad toothache.
Before starting your chemotherapy you should have been told to see your dentist and get any dental work done before you started chemotherapy, as you would not be able to have any dental treatment during your chemotherapy. This is done to avoid infection during treatment, so again you should tell your oncologist and find out what can be done.
Let me know how you get on.
Sending you fond thoughts.
Sylvia xxxx
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Hello gmmiph (Gina),
Thank you for your post.
I think you have misunderstood about a new job. I am a volunteer director in the apartment complex where I live. I had to be elected by the residents and have been doing this for more than six years. My husband, Raymond, did it for seven years before, but we work together. We are responsible for the good running of the complex. I have a directors' meeting on Thursday so have been busy with agendas, newsletters to the residents, budget setting and checking the monthly accounts. I also liaise with contractors, especially the gardeners, whom I instruct as to what work is to be done. I do quite a lot of the gardening as well.
Doing that and keeping the thread going takes up a lot of my time.
This week I have not yet had time to read Monday's newspapers! I am very interested in politics, current affairs, literature, language, and many other things. A cousin has just sent me a book she has written to proof read!!!
it is quite common to get constipated during chemotherapy treatment, so you need to drink a lot, get plenty of fibre and eat prunes and dried figs, so drinking prune juice is good. A good mug of strong coffee can also help, and I would think that plenty of green tea would also help.
Keep up the good work and keep hydrated.
Canola oil is also thought of as a good oil in this country. In my cupboard I have extra virgin olive oil, organic cold pressed avocado oil (good for the skin and hair) for cooking and salads, as well as the organic liquid coconut oil I mentioned to Mary and the solid extra virgin coconut oil.
Sending you best wishes.
Sylvia xxxx
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Hi Sylvia/ all
I just popped on the thread and read you had brought some coconut oil.
I just love it and have used it for a long time. I use the solid organic version . The main things I use it for are removing make up or as a moisturiser, I sometimes put it in the bath as a bath oil ( I think lots of other products have too many chemicals)I'm going to start to use it again as an oil puller in my mouth. I did this earlier in the year to remove bacteria etc from the mouth. You swish it about for about 15 mins then spit it out, I don't know about removing bacteria but it made my teeth a lot whiter so I thought it must be doing some good.
I don't do a lot of cooking but believe it's very good to cook with.
As you can see I'm a big fan of coconuts 🌴
Amanda
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Sylvia,
Thanks for your every post. I admire your tireless response to each one of us, not just mere replies but all being sensible and practical. It's amazing, you are so passionate in what you are doing.
May God bless you with more strenght and wisdom to help others.
Wish you all the happiness,
Gina
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thanks Sylvia have to get platelets done today to see if I can have some dental work done. Still very sore all ova but get there! One day at a time
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Hi Sylvia, Mary and all,
I got my first CBC test results today. My Haemoglobin and wbc are a bit lower than normal. Platelet and neutrophils are ok. This morning, my gums bled a little. Two days ago up to today, I have mild shortness of breath that goes on and off and a general uneasy feeling which i ignored and assumed as fatigue due to the drugs. I thought i am constipated, but i pooped twice yesterday and about to this morning. LOL. Today is my first day without medications.
I already texted my MO about my Cbc results and awaiting response.
See you, take care,
Gina
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Hello Amanda,
I have just read your post and was interested to know that you have been using it for a long time. I have started using the solid organic version but like you I am now using it for cooking. I have tried it but much prefer extra virgin olive oil. I am going to use it mainly in my mouth to see if it helps the gums. I have heard it makes your teeth white, but I want to see if it removes bacteria from the gums.
I shall try it on the skin along with the liquid version.
I have been using Dr Organics range of extra virgin coconut oil in moisturising creams, shampoos and conditioners. Avocado oil is excellent for use on the face. It is the only oil that can be mixed with water. I have used it on and off for about thirty years and used to moisturise my scalp with it before gently shampooing when I had no hair through chemotherapy.
Take care of yourself.
Fond thoughts.
Sylvia xxxx
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Hello gmmiph (Gina),
Thank you for your post and your kind words about the thread.
Thank for your other post with details about how you are feeling and what is happening after your first chemotherapy.
I managed to keep my red blood cell levels normal during chemotherapy by eating iron rich foods such as prunes and dried figs, along with taking iron tablets. I was lucky enough not to have problems with low white blood cells. I am sure your oncologist will treat you as needed.
Make sure you tell your oncologist about all these things.
Bleeding gums can happen. The whole mouth is affected by chemotherapy and that is why patients are told to check in with their dentist and deal with any treatment before they start chemotherapy, as you cannot have it during the treatment because of the risk of infection. You can get ulceration in the mouth and a very dry mouth, but there are products to deal with it. Ask your dentist about it.
Keep looking forward, keep hydrated and do not overdo things.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
I would be very careful about having dental work done during chemotherapy. When I was diagnosed I was told to get any dental work done before starting the chemotherapy, as I would not be able to have any dental work done during chemotherapy because of infection. I did get dental work done before starting chemotherapy and then did not see my dentist until I had finished all my breast cancer treatment.
A friend of mine went and had dental work during her chemotherapy, was ill and had to go to the hospital.
The mouth is very vulnerable during chemotherapy and you need to be very careful.
Thinking of you.
Best wishes.
Sylvia xxxx
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Hi Sylvia , Mary and all
Sorry for being late coming here. To say I'm really busy doesn't seem a good excuse but I should honestly say I've been through lots of things recently . In spite of being active and cheerful , I have to take some antidepressants to treat my head pressure which was really teasing me . If this head pressure had occurred to me before my diagnosis , I wouldn't give it asecond thought. Yet, to be honest , I'm feel a great panic with any pain or discomfort . Sometimes in the middle of night , I wake up with a tingling and numbness in my hand or arm which scares me out of my mind .
Also, my daughter has been sick recently , which has added to my anxieties . At first she felt dizzy and short of breath.I took her to the doctor. She had sinusitis for which the doctor prescribed antibiotics . Yet , after that she got a bad constipation , for which she couldn't go to school for 2 days as a result of the sever pain she had when sitting . To be honest , I was scared to death for her constipation too.
I don't know whether these feelings are normal after 2 years or I'm getting into some mental problems . Two years ago , this time my chemo was finished , but I was dealing with the sever side effects . Sometimes , I feel a great depression because of the fear of the unknown .
I hope to get over it soon .
LOVE
Hanieh
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Hi, Gina,
It is normal for your red and white cells to be lower than usual after chemo. The chemo drugs are supposed to attack fast-growing cells (cancer), which unfortunately includes our blood cells. After my first chemo my white cells dropped to .03%. That is almost none, and I ended up in the hospital because I had a fever. I have never felt so weak in my life. After 2 days they gave me an injection that boosted my white cells quickly, amazing the difference it made. After that they split up my dose and my WBC didn't get below 2.00% or something like that.
Tell your MO about all symptoms, and it's very possible your uneasy feeling is caused by being short of breath. If you have problems with your mouth, the doc can prescribe some "magic" mouthwash, which I picked up at the compounding pharmacy. It is good if you have sores in your mouth, and maybe it would help bleeding gums too. I had white spots in my mouth a couple of times during chemo.
I hope you are feeling okay today! What is the weather like in the Phillipines right now?
Talk to you soon,
Mary
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Hi Sylvia, Mary and all,
Thank you for your wonderful posts and advice.
I can't compare my previous CBC with my most recent (Oct. 18 and Nov. 9) because they are expressed in different units which is because I went to two different hospitals. The previous was taken in the hospital where my doctor is accredited and the recent was taken in a hospital clinic near us. Both have good reputations.
My hemoglobin before was 12.9 g/dl (norm is 11.6 - 15.5), now it's 114 g/L (norm is 120 - 160), so it is easy to see that my hemoglobin dropped. On the other hand, my WBC before was 5,980 mm3 (norm is 4,800 - 10,800). The recent was 4.0 x10'/L (norm is 4.5 - 10.0). Basing on the norms, both my hemoglobin and WBC dropped. All the other blood tests were still within normal range.
I texted my MO, giving her the results and telling her about my constipation and mild of shortness of breath on her orders that I should report everything I feel. Without telling me to see her personally, she texted back and gave me an order for cbc with platelet and prothrombin time, chest X-ray and 2d echo! I was shocked! How can she order those without physical exam? I called her up and told her exactly how I am feeling and she said to delay the testing and wait if things improve. During the day, I have completed all my prescribed take-home meds including placil, dexamethasone, and nexium (I am continuing on my iberet for 20 days), and since I am feeling constipated, ate 5 pieces of prunes, drank a lot of hot green tea. Then, when evening came, I rushed to the toilet and pooped the longest pooped of my life, like it was the Great Wall of China. Gas came out so loudly, I thought it alarmed the whole neighborhood. LOL! Then I felt instant relief, from all of my symptoms, no more nausea, gas pains, shortness of breath, queasy feeling. Allelujiah.
Do you think the prunes did it? or was it from the waning effects of the take-home meds I took?
Hi Hanieh, sorry to hear you still have that nasty headache. Hope all gets better for you and your daughter.
Fond thoughts,
Gina
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3rd dose of paxitaxol tomorrow then 9 to go! Knocked my other shoulder on the lumpectomy side on a gate today and had a paranoid moment think argghhhh hope I haven't dislodged anything then logic set in and I thought there is nothing there ! All I'll get is a bruise
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Hi Mary,
I missed your question about the weather here. Usually, the month of November up to February are the best period as far as our weather is concerned. Seldom do we have typhoons on these months. The temperature is usually cooler, around 29 - 32 deg Celsius, or may be cooler depending on the specific time of day. Perfect for tourists to visit. We have colder weather in some parts like Baguio and Tagaytay, which are both near the capital of Manila, easily accessible by land transports. But still the best places to visit are mostly the Visayan region where nice tropical resorts are located like those in Palawan, Cebu, Bohol, and Boracay.
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Hi Kat
I was wondering if your doctor waited two weeks after the
Last AC to start Taxol.Also,did they suggest
Carboplatin? Are you icing during infusions?
I am worried about Taxol and it seems like this
3rd AC is leaving me a little unsteady on my feet and light headed.
Rhond
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HI, Hanieh,
Sorry to hear you are still suffering from the head pressure and also sorry to hear that your daughter has been ill. I am still wondering if you are internalizing all your worries, and they are getting you down. Do you have someone you can talk to about all this? Always you can talk to us, but sometimes it's nice to talk face-to-face with someone who understands what you have been through.
I also am wondering if you are both suffering from allergies, I seem to suffer from year-round allergies to this and that, and they started to bother me much more in the last few years.
The worry and fear is something we have to learn to live with, unfortunately. It has to go into the back of our minds, and we have to try to replace it with gratitude for what we do have and determination to be the best we can be. Sometimes I wish time would go by even faster and I would be at the 5-yr. survival mark, but quickly I realize I don't really want to be 2 years older than I already am! Then life steps in, I am busy, and I forget those thoughts. It bothers me that all of the smart doctors in the world can't figure out why these diseases are happening at the rate they are, they have many theories but no definitive answers. We just have to live the best way we can, and enjoy all we have the ability to enjoy. You realize, don't you, that I am talking to myself as much as to you right now! I need these pep talks too!
I'm glad you are active, busy and cheerful; you are important to a lot of people. I do hope you can find some relief, it is good to hear from you and come back soon!
Talk to you again soon,
Love, Mary
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Hello Hanieh,
It was nice to see you back on the thread.
I do understand that you are leading a very busy life and that is definitely a good excuse for not posting as often as you did.
I can understand that you have a lot going on.
I can also understand that you are concerned about the head pressure that you are having and that is bothering you. If that were me I would want to find out what is causing it rather than taking antidepressants. What does your doctor say about this head pressure? There is always a reason for any symptoms.
I do understand that after a breast cancer diagnosis and the treatment that anything out of the norm for us concerns and frightens us. We have to get it checked and diagnosed and not take No for an answer! I get the impression that many people are being put on antidepressants for all kinds of problems. Here in the UK people seem to be on amitriptyline. Everybody seems to mention it to me for whatever reason. Is this what you are taking? If not, are you taking an SSRI antidepressant which is the second-line choice? No doubt they will make you sleep, but this does not tell you why you are suffering from head pressure. You need to get to the bottom of this. It sounds like sinus, but who knows? We are not doctors and we should not self-diagnose.
As for the tingling in your hand or arm, if that were me I would get it checked and see if it is connected to the breast cancer treatment.
By the way, Hanieh, I noticed on your profile that you do not mention any surgery. Did you have surgery?
I was sorry to read that your daughter has been sick recently and I can understand your anxieties. I do hope she will feel better soon. The antibiotics could have caused the constipation. It seems to be that they cause either constipation or diarrhoea. There are plenty of products for constipation but a natural way would be to eat prunes, dried figs, prune juice, etc. She needs to eat plenty of fruit and vegetables for fibre and to keep hydrated. When I was a child a bottle of Syrup of Figs was what we were given in spoonfuls as needed.
I do hope you and your daughter will start feeling better. I get the feeling that you are doing too much and that you need to cut back. You have to try to stop worrying about cancer coming back. Worrying will not help. You have to say that you will deal with it, if and when. Worrying will do your body no good.
Have you any breaks coming up soon?
That is all for now.
Love.
Sylvia xxxx
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Hi Sylvia , Mary , gmmiph and all
Thank you all for your comments . Sorry if I can't keep up with all the posts here.
Mary, as I said before , I never feel comfortable talking to someone who has never experienced what we have gone through . It seems as if they can never deeply understand what you mean .
About what you said about allergy , my Gp prescribed an antihistamine .Yet , the day after the night I took one, I couldn't stand on my feet as a felt extremely dizzy and drowsy .
By the way Mary, congratulations on the election of Trump for the presidency. I hope he hears the people's voice in the US and sticks to his promises as to make better living conditions for the Americans .
Sylvia , I have gone to several doctors. From GPS to Eye specialist , ear-throat and nose specialist, and the last one a neurologist . All of them believe it is just anxiety . I had brain MRI 7 months ago because of a similar head pressure, so they all think having another MRI is not necessary . Right now I'm talking Propranolol , half of Citalopram 20 ever morning, and the multivitamin Well Woman which is being manufactured in England .
My pain has subsided. But I have some feelings of dizziness .
About what you asked about my surgery , I should say I had lumpectomy plus boost radiation during surgery . My surgeon is against mastectomy unless it's necessary .
I will have a week off in a month . My daughter's constipation has gone and she is feeling much better .
Tonight is our weekend . My husband and I went to the movies and we had dinner out. I don't feel good about it as my chelostrol levels are high. I should try to make up for it by exercising more.
Love you all
Hanieh
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hi Rhonda
My third AC was the hardest. We waited 3?weeks to start the paxitaxol and no they would not give carbopllatun given that the lesion was 9mm eith clear sentinel nodes and clear MRI and ct clear. I am having the paxitaxol weekly and have my 3rd dose today. Side effects are bearable it's just the anxiety that I can't get rid of uts terrible
Cheers
Kat
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Hi, Hanieh,
I guess in a way you are lucky that you don't know many people who know what you have gone through, it seems I know far too many people who have gone through what we have. One man who I know has kidney cancer, and has lived with it for 10 years. When we see each other, we always hug and he asks me how I am. I always say, "Still here!" There is a bond between us for sure. I thought perhaps there was a support group you could attend, where there are usually people who are dealing with all stages of the cancer journey.
I don't like antihistamines either, they make my head feel very tight and dry.
And as for our election, it was certainly a long campaign, I'm glad that's over. I do think a lot of things here need to change. It is just surreal when economists and politicians talk so blithely about being $20,000,000,000,000 (that's $20 Trillion!!) in debt, and then talk about more things that they need to spend money on. I think that's what drove a lot of people's vote, they are just sick of politicians. They don't seem to live by the same rules the rest of us do. We don't trust them anymore. Donald Trump is not a politician, not yet anyway. We will see what happens!
It sounds like you have been to a lot of doctors. I did the same after chemo when I had so much pain. None of them had real answers for me, my GP came the closest, he said it was probably related to the neuropathy and would probably be intense for about 6 months. I do understand your frustration, and your wish for a clear answer.
I hope you enjoy your week off in a month. Perhaps you will go on another trip? That would be a great way to take your mind off things!
Hope you and your daughter continue to be better and better, and I will talk to you soon.
Love, Mary
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Thanks Sylvia - I will stay in touch.
I did know in 1999 that I was TNBC but I believe it had only recently been identified as something different and difficult. Hence the "don't expect you to live" kind of prognosis that I was given at the time.
I just had AC first time. I was given Taxotere this time as my veins are so bad having Taxol - which I believe they wanted to do every week - would have been impossible without a port. They were so concerned about how aggressive the cancer was they started me straight away and I hadn't even finished having the staging scans. I had a break after 4 sessions as it seemed that it was chemo-resistant (that was a fun expereince!) but after surgery they felt it had actually worked better than they imagined. I had to beg (quite literally) to have the last two cycles.
I had a really bad seroma following my mastectomy which I had drained about 7 times but it would not go away. It would become pressurised and made it feel like my ribs were going break. I ended up having 2 surgeries to have it opened again and the last one seemed to sort of resolve it - there was lots of glue and staples. It's not quite right though. My surgeon guesses that the radiotherapy I had back in 1999 has probably caused it as it would have been more intense that what is given now - which is more focused. I have given up trying to wear a bra/prosthesis as I've just had too many problems.
You're right about the taxation - and I'm always lecturing people about that too - great news Eribulin has been passed by NICE as a standard treatment drug.
I am still waiting on a referral, you are quite right that the NHS is underfunded and overwhelmed. An 8 week urgent referral - I have been offered an appointment for February 28th! I am seeing my oncologist in December though and can imagine that she will probably book a CT scan for me as I've just got too many worrying symptoms. I am actually planning on getting a private tumour marker test before I see her as I don't want to wait around to find out what's going on. I know they'll do it at the hospital but knowing they had already gone up 50% and are one point of being high has been so difficult to live with the last 3 months (and that was before I had developed a swallowing problem).
I want to go to see them prepared.
Barbed.
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Hello Hanieh,
It was nice to hear from you again. Do not worry if you cannot keep up with all the posts. Just read what you can. The thread is very busy at the moment with people going through chemotherapy. If it is easier for you, concentrate on those you feel you know the best. For a long time we had a smaller group and the posts were frequent so we got to know one another more easily, and also we got to know one another as people independent of our breast cancer, once our cancer treatment had finished. We had Mary, you, adagio, Amanda10, and Michael. I really feel I know you all quite well.
I agree that there is no point discussing how we feel about having been diagnosed with breast cancer and our journey through treatment with other people. Unless you have had breast cancer you cannot understand the fear and anxiety people go through and how they have to learn to live with the fear of spread or recurrence.
Reading your details it is probably true that your head pressure is due to anxiety, so you may need some relaxation therapy, either one-to-one or group therapy.
I would think a multivitamin is probably useful. I take one most days. I do not know much about the drugs you are taking but I shall have a look at them in my BMA book. I think Propranolol is a very common drug here.
I do hope you will have an enjoyable time when you have a week off in a month's time.
I was so glad to know that your daughter is now feeling much better.
I was glad to know that you and your husband went out to the movies and had dinner out. That should have been relaxing for you.
Try not to worry so much. Just do what you can. Enjoy life, enjoy your time with your family.
Keep in touch.
Love.
Sylvia xxxx
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Hello Barbed,
Thank you for your most interesting post and all the details. You are right about what the "experts" say with reference to TNBC, but it is only because they have no post treatment medication after the standard treatment. I was told on diagnosis and when I had the fine needle aspiration, done by the breast cancer consultant, that it was a poor prognosis because tamoxifen was no good for me. I just chose to ignore it and when I finally decided to have the orthodox treatment, I did things as I thought fit.
It sounds as though you have had a really rough time and I do hope things will get better for you.
In the UK we all have to stand up for our rights and demand that we get what we want to improve our chance of survival. I had no complaints with my treatment back in 2005/6 and think I had a dream team of women looking after me. I am not so sure it is the same now, as I think cancer cases are rising, there is a shortage of oncologists, radiologists and staff of all kinds. I read a long article in the Guardian on Monday and the treatment of cancer is not good enough in this country. There is too long a wait for referrals, too long a wait for treatment and just a general state of treatment of cancer not being up to standard in the UK. We are way behind countries like France and Germany. We really need an NHS that is better funded, better staffed, and not so overwhelmed. If you can find the article on line I think you will find it interesting.
I do hope everything will improve for you and that in time you will be able to wear a bra and a prosthesis, in the meantime, just be comfortable.
Do not be shy about pushing for an earlier appointment. Let us know how you get on with your oncologist in December. I do hope everything will go alright.
By the way, my oncologist told me that tumour marker tests were not reliable, so try not to worry too much. My oncologist, whom I trusted, never did any tumour marker tests. If getting one will bring you peace of mind, then that is all for the good. I always tried to go to my appointments well informed and with questions to ask.
Sending you fond thoughts.
Sylvia xxxx
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