Calling all triple negative breast cancer patients in the UK
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Hello Sylvia, Mary and all,
I've just had my 3rd and final FEC infusion yesterday, feeling a little woozy, so many old and new post chemo meds to take. I am so tired and sleepy. Need to rest a bit.
Talk to you later.
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Hi Sylvia,
Congratulations on 11 1/2 years!!! I had my 3rd Taxol yesterday.My red blood cells And iron is still low-almost borderline normal sic I am getting there.My appetite is
Much better so that helps.I am praying for a nice Christmas-which just happens to be my birthday.Thanksgiving was not a lot of fun this year.I am
A little nervous about crowds and sickness so I am not
Hugging or kissing anyone. A very good friend bought
Me a beautiful Celtic shield that is engraved with the words Warrior
Spirit-I will wear it every day!
Warm regards,
Rhonda
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Hi Sylvia
Congrats again on 11 1/2 years. What an inspiration you are.
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Hello Gina,
Congratulations on completing your third and final FEC infusion. I do hope the woozy feeling will soon go. Remember that this treatment is cumulative, so you are bound to feel somewhat below par. Remember to keep drinking water to flush this all out.
You mentioned old and new post-chemotherapy meds that you have to take. What exactly are you being given? When I was going through treatment we were given anti-nausea meds to take for three days, and that was that. I know that since then, the next day after chemotherapy, there are the meds to control the white blood cell count.
Just let yourself go and sleep as much as you need.
Let us know how things go and if there are any problems.
By the way, I did like your picture about the mouse in front of the cheese in a mouse trap, and the caption Never Give Up! That has to be one of our mottoes here.
All the very best.
Sylvia xxxx
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Hello Rhonda,
Thank you for your congratulations.
Congratulations to you for having one more Taxol infusion behind you. I do hope you will manage to keep your red blood cell count to borderline-normal or even improve on it. Are you taking any iron supplements or eating iron rich foods such as prunes?
I was glad to know you are eating better and I do hope you will have a good Christmas.
Happy Birthday, which I am assuming is on December 25th.
It is good to be careful about being in crowds as your immune system will be impaired and make you vulnerable.
Do oncologists these days suggest anything for improving the immune system? I took immune boosters during my treatment, but it was on my own initiative. It has always been a mystery to me that we are told one of the causes of cancer is a lazy immune system which has not fought off cancer cells, but the very drugs that are used to treat cancer weaken the immune system!!
That Warrior shield sounds interesting. I picked up on the word Celtic. Do you have Welsh ancestry?
Keep looking forward and keep drinking that water.
Fond thoughts.
Sylvia xxxx
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Hello Val,
Thank you for your congratulations. It makes me happy if I can inspire you and others to get through this.
Fond thoughts.
Sylvia xxxx
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Hi rlk58, I remember that tired feeling. My neighbor invited me to walk with her and her dogs one day. I said"sure" and to my surprise I popped out after one house. It passes and now I am much better. This to shall pass. My appetite is almost back to normal. Be patient. Sylvia, You are so inspiring and kind.Congrats on 11 1/2 yrs
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Hello jcpriest0469n,
Thank you so much for popping in to support Rhonda. It is so good for those going through treatment to hear from others who have been on this journey. It lets them know that they will get to the end of it.
I am glad to know that you are doing well after finishing your treatment.
I do like the expression This Too Shall Pass. It reminds me of a very dear friend I had in Canada, now, sadly departed, but she was always saying this, along with what goes around comes around, and if you have lemons make lemonade.
Thank you for your very kind words. It makes me feel happy that I am helping people.
Take care and very best wishes.
Sylvia xxxx
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Hi Sylvia,
Thank you for always looking after us and giving those wise advice and words of encouragement. It really helps me go thru my treatments.
I am still feeling a little bit sluggish and last nite, I almost threw up which did not happen on my previous infusions. The dexamethasone steroid i used to take home after each chemo was taken off by my MO maybe because of cardio side effect fears. I was told to get both an echogram and bloodtests two days before my next chemo which would be Taxotere this time come 2nd week of January, 2017.
As for my take-hone meds, there are two sets, the post-chemo meds after my 3rd FEC and the pre-chemo meds before and during my Taxotere infusion.
My post-chemo meds are the usual Placil (anti-nausea), Nexium (for acid reflux), Claritin (for bone pain and allergy itch) and three Filgrastim shots (for white blood boost), the first shot of which i took yesterday afternoon. Then, i was also given new drugs like Prednisone (corticosteroid, again for body itch), Essentiale (for liver support throughout the whole chemo treatments) and Caltrate (as calcium and Vitamin D boosts, for as long as needed).
I will send this post quickly and continue again because sometimes my long posts gets deleted before it gets sent and I have to retype everything again. Sending now...
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Hi Sylvia,
So, to continue with my previous post, my pre-chemo meds are for three days starting a day before my actual Taxotere infusion and these include the steroid, antacid, and Claritin. Taxotere may be stronger and have more SEs hence, the pre-meds, in anticipation. Again, i will have to be in hospital confinement for a day for monitoring. I asked my MO if i can just have the outpatient chemo instead but she says it is SOP for first-time drug chemos, just to be safe against allegies and other negative reactions. I also need a 2D echo aside from the ECG and bloodtests before Docetaxel (Taxotere).
As for the mouse post, i think i posted it on the other TN thread. I do post inspirational and funny (sometimes naughty) pictures and videos to lighten the moods and hopefully put a smile on our troubled sisters and brothers. It is the least i can do for them. I dont know if you noticed but I already created my own thread "A Cure for Cancer... LAUGHTER" as my way of helping cheer up patients. Some appreciates my thread, maybe others don't. I just want a compilation of jokes, funnies and inspirations where everyone can look if they feel sad or bored. You can also post on that thread if you feel like it. Share pictures and anything you want to share.
I've also read about the common things and experiences that you and Mary have, about your relatives, husbands and I think these things bring a special bond for all of us here. Being able to share life's experiences with one another and giving advices/supports provide upliftment for each of us, knowing we are not alone, even if we are thousands of miles apart. It's a great feeling. I am grateful for these things.
Ok, i've posted long enough.
Talk to you again next time.
Regards to Mary and the rest of the ladies and gents on this thread.
Take care,
Gina
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Hi Rhonda,
I hope your condition improves before your birthday. You deserve to enjoy your rare "Christmas Birthday". I searched the internet for an appropriate greeting on your rare birthday and found this...
I am wishing you an advanced Merry Christmas Birthday!!! Prayers and positive thoughts for you and your loved ones!!!
Regards,
Gina
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Hi Mary,
For all your wonderful posts, support, and kind words, thank you very much. For all that you've been thru, i wish you the happiest life that you can possibly have.
Take Care,
Gina
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Hello Gina,
Thank you for your kind words and I was so sorry to read this evening that you are still not feeling so good. I am only too happy to try to help you through this chemotherapy treatment as I know it is difficult and a big challenge. You can do this.
I do hope you will start to feel better once you get through the three days after the infusion and come off the meds given to you for those three days.
I noticed that you said you have almost thrown up and that this had not happened during your previous treatments. This has probably happened because you did not have the usual dexamethasone steroid which is the usual anti-nausea steroid. You said that your MO had taken this away because of cardio side effect fears. Do you have known cardiac problems? Over here I had an ECG before I started chemotherapy and everything was fine, and then I had another ECG when I finished chemotherapy and everything was fine. I had a blood test the day before I was due to go for each chemotherapy session. I think it is good that you are having an echogram and blood tests before you start your next round of chemotherapy with docetaxel (Taxotere). I was interested to read that you are having Taxotere, because that is what I had here in England. So many of the patients coming on the forum are having paclitaxel (Taxol). My oncologist told me that Taxotere was not so harmful to the heart.
I do hope you will start to feel better and that you will do all you can to build yourself up ready for the Taxotere in the second week of January. Try to eat a normally as possible, have some leisurely walks, keep hydrated, get plenty of rest and sleep.
To keep nausea at bay I found the most effective was ginger. You can lemon and ginger tea, ginger nut biscuits are very good and just putting some grated fresh ginger in hot water is also good.
I am assuming you will not be taking the pre Taxotere meds until just before you start Taxotere.
I am sure it will do your body a lot of good to have a rest from drugs after the post meds and before the pre meds.
I do hope you will be feeling so much better so that you can have some kind of enjoyment on Christmas day.
I get the impression that you are a person who is very full of life and very energetic. Right now you are going through a difficult time, but you will get back to normal.
I do understand how you can lose posts and how frustrating it is.
Thinking of you and sending fond thoughts from the UK.
Sylvia xxxx
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To my Everdearest Cancer and all of your Miserable Relatives,
EFF you!!!
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Hello again, Gina,
I have just discovered your second post and your pictures. I shall certainly have a look at your thread.
I do hope you will soon be feeling much better. At least you know that laughter is the best medicine.
Very best wishes.
Sylvia xxxx
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congratulations to you Val and LilY for the good news.. wishing you a continous success for many years to come.. congrats to grimp also for finishing FEC and wishing to all the ones in treatment the best of luck.. fighting and staying positive is important.. at times its OK to feel low tired and doubtful but we ought to pick ourselves up and keep living the life we still have.. May we all have enough strenght to fight this and win this!
Special hello to Sylvia and Mary without forgetting all the other ladies and men in this thread.
Mary Christmas and happy new year to all! !
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Hello 4everStrong,
Many thanks for popping in to offer congratulations and support to various people on the thread. I do agree with what you said. We have to pick ourselves up and keep living the life we still have.
How is life treating you in Paris?
Joyeux Noël et Meilleurs Vœux Pour Le Nouvel An.
Fond thoughts.
Sylvia xxxx
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Thank you Gina for the beautiful birthday greeting.It had
Always been difficult to have a Christmas Birthday.Although I do feel as if it is special.Sorry to hear you are feeling nauseous.I hope that subsides.I feel like I
Am finally getting my appetite back.I went shopping in Woodstock with my daughter and grand daughter and it felt so good to walk around without getting tired-hoping that this continues through the weekend.
Rhond
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Hi, Gina,
I love all your comical posts, but the lady giving cancer "the finger" is the best, love it! It's how I feel, too,
Glad you are finished with the FEC, onward to the Taxotere. I also had Taxotere. For my first infusion, I was given Adriamycin, Cytoxan, and Taxotere. I landed in the hospital a week later because of neutropenia, and believe my neuropathy started then. After that my treatments were split into AC followed by T, and I began icing my feet before the T, because the Taxotere was the cause. But I think the damage was already done in my case with that first big dose.. You might want to ask your docs about foot icing and if they think there is any benefit to it. Neuropathy is no fun, mine seems to move, migrate, be worse and then better, and is a general nuisance.
At the time I was doing chemo, some people here where I am were still getting all 3 drugs at once, and a larger dose of T, so as to finish everything in 6 doses, it didn't work for me. I see that is no longer the norm, and I think that's great. I think it really cuts down on the SEs to give a small dose of Taxotere spread over more doses.
I totally agree with you about sharing life experiences with each other, I can't tell you how much comfort I have received from Sylvia, Hanieh, you, and so many others here for almost 2 years now. I am just old enough to find it incredible that we can become so close to people so far away, I don't take it for granted. We began with one big thing in common, and find out along the way that we have many things in common, and it's wonderful to have friends all over the world!
You have a wonderful spirit, I don't believe that cancer can get you down!
I will have to look at the thread you started, didn't know about that....
talk to you soon, love,
Mary
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Rhonda and 4everstrong,
Thanks for your wellwishes. Hope we all have a happy SE-free Christmas.
Sylvia,
I hope you will like my funny thread. You can go through any portions of it and find lots of funny stuff. Actually, it is my husband who digs up all these funny things on the net and shows it to me. He likes to always make me laugh especially now that i am in this delicate condition. Sometimes i think he is trying to kill me with laughter. Many times, when we are alone, at home or outside, we laugh like crazy, talikng about funny stuff and people would look at us. It's fun to have him around, he is full of humor (but sometimes, he can also be such a prick, with extreme personality).
I have been taking anti-nausea meds all throughout my chemos, the Plasil (not Placil, as i prevously typed) tablets kept my nausea at bay. I thought dexamethasones are for muscle pains only but i surfed just now that it is also for nausea, so probably that's the reason for my near throw up. I suddenly woke up last nite and rushed to the bathroom thinking i would puke but i did not. I felt as if i was being choked. I am glad it has passed this morning although I still feel a bit nauseous and has loss of appetite. My taste is not good and i could only eat fruits and drink geen tea. I already have ginger candies for my nausea but i am afraid to eat them for fear of mouthsores. Unlike my first infusion, I did not have mouthsores during my second, and I would continue gargling baking soda and salt with water to prevent them. I also said that I am now on Filgrastim shots until tomorrow to keep my white bloods cells up and avoid infections. My haemoglobin and red blood cells are still low, and i can only take Iberet iron tablets along with moringa and sweet potato tops veggies as advised by my MO but they are really not that effective. I don't want to but i am forced tol try adding organic eggs and chicken as well as grass-fed beef into my diet to boost my protein intake and my red blood count.
I forgot to tell you about my kidney and my suddenly high normal creatinine, but my MO said there is nothing to worry about them as long as it is still in the normal level.
As for my heart, I dont have any heart condition but my 2D echo before chemo started showed that i may be beginning to have an enlarged heart as my MO read the results although she said it is still generally ok.
So that's about it for my health update.
Talk to you again if i still can as i have plans to visit my relatives either tomorrow Dec 24 or on Christmas day.
Advanced Merry Christmas to All!
Love you All,
Gina
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Hi Mary,
I just finished sending my post when i read yours.
Glad you like my funny posts. Please do read my thread, "A Cure for Cancer... LAUGHTER". I started it about two months ago, and only a few have seen it. I feel like a fool continuing to post on a thread that nobody wants but there are some lurkers who like it so i continued. Maybe some are afraid to click the links but they are actually just Youtube links of funny stuff. I understand them though.
My 3 taxotere sessions will also be on a 21-day cycle just like my FEC. My MO does not believe that spreading the dose would have any major impact, but i am wary of this. I am already beginning to feel pain in my arm veins since i dont have a port. I will see what happens on my first T infusion and adjust if needed.
I have already noted to ice my hands and feet during the Taxotere sessions as i have already read that from your previous posts. I asked my MO about neuropathy but she downplayed the side effect and says if ever it comes, it would also disappear in a year or so. Of course i now know better because of your actual experiences. When am i suppose to soak my hands and feet on ice? Right after the actual Taxotere chemo? and for how long?
Thank you for everything. All of the ladies and gents on this thread are so wonderful.
Wishing only the best for you.
Love,
Gina
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Hi Mary,
I researched a bit about how to ice the hands and feet during Taxol infusion. Please confirm if it is correct. Here is how it is done.
Icing of Hands and feet during Taxol treatment:
1) I took two small dish pans to infusion purchased at a Dollar Store for $1.00 each. Some people take frozen peas or baggies of ice. The dish pans worked better for me.
2) Before the Chemo Nurse began the Taxol, I had her fill up the dish pans with ice. I only used the ice during the Taxol infusion, not with the preliminary drugs.
3) I kept my socks on (brought an extra pair for after Chemo) and had the nurse give me a washcloth to put over the ice for my hands. (thin gloves would have worked as well)
4) I soaked my hands and feet in the icy dish pans as long as I could tolerate it, then I would pull my hands and feet out of the ice for short breaks. The nurse got me two towels to dry off when I was through. I did it for the entire Taxol portion of the infusion.
With the annoyance the little bit of neuropathy causes me daily, I am so thankful I took the time to do this to prevent debilitating neuropathy.
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Mary, i just wonder how I could ice my left hand completely if it will be used for cannula vein infusion. The only thing I can think of is to use an ice pack over my fingers but not under or on the palm becsuse they put a brace on my hand to keep it steady during infusion.
I will try do exactly the procedures above unless you have a bettwr idea.
Ok, talk to you again.
Gina
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Hi Sylvia/all
Hope you are all well. Sending my love to all those going through treatment...this was me the year before last.
Gina I had cold mitts for hands and feet provided by the hospital while having Taxol. They replaced these two or three times for each treatment so they are icy cold. I don't think they automatically offer as it's a bit of a chore for them. My daughter had done a bit of research and said , she wants the cold mitts 'lol. I lost no nails and have had no problem with neuropathy so think it is worthwhile. I found the Taxol a lot easier than FEC. I hope you go on ok... nearly there xx
I'm just off work at the moment with awful flu. I think it's on it's way out now so hoping I will feel better Christmas Day. I just wondered if anyone had experienced of indigestion after treatment? I have notice this over the past week and will mention it at my next review.
Has anyone got any special plans for Christmas? Mine will be a quiet one with family. New year I have booked in a hotel with my daughter for a dinner and dance so that will be something to look forward to.
Wishing you all a very happy Christmas 🎄 and praying that we all have good health going forward .
Amanda
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Gina,
I bought some gel slippers online, I put them in the freezer. Directions said to put them on my feet about 15 minutes before the infusion started, and to leave them on for a short while after it finished. But as I said, I think the damage had already been done. And who knows, perhaps I was someone who was susceptible to nerve damage, not everyone gets it. But I later learned that the smaller doses were less likely to cause the damage. The cancer center where I got my infusions did not offer any guidance on this; the nurse told me they used to offer the cold caps for hair but didn't think it worked well enough to continue. And yes, when I told my MO I thought I had neuropathy, he said, "Oh, maybe, but it will go away when you are finished with treatment." He was wrong, and since he's retired I can't even tell him how wrong he was!
I just saw your latest post. Yes, I think your method would accomplish the same thing, it's just more labor-intensive. I would do something like that for my hands, I found icepacks that were large and pliable and wrapped them around my hands with towels. You can also purchase the gel gloves but these things are all pricey, so I just bought the gel slippers. I can't tell you the brand name, they are on loan to my niece at the moment so I don't have them. I think it's worth a try for you to attempt one of these methods, I mean, while you are sitting there what else do you have to do??
Have a wonderful Christmas Gina, and safe travels as you visit family,
Talk to you soon!
Mary
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Hi, 4everstrong,
Thanks for the positivity you always bring, it's always needed! I hope you and your family have a very Merry Christmas and I hope your New Year is filled with health and happiness.
See you again soon, Mary
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Hi, Amanda,
Good to see you again! Sorry you have the flu, it must be world-wide, my brother has it and several other people I know. I am going to try and be careful at Christmas gatherings, what with all the hugging that is always going on. It is a nasty version of flu I've seen here, with high fever for several days. Is that what your flu was like?
Glad you escaped the neuropathy, that is a lucky break for you.
You mentioned stomach distress. In my case, I was diagnosed before cancer diagnosis with acid reflux, I took a course of pills for a few months and it was gone. After the cancer and chemo, my upset, painful stomach/acid issues came back with a vengeance. Only recently have I gotten it somewhat under control, I think, and I am not on the strong acid-blockers. I take a daily probiotic, and a digestive enzyme. I haven't been able to give up my 2 cups of coffee, but I found a low-acid, organic coffee that is really good. I don't eat much citrus, and if I have a flare-up I go back to the very alkaline food group. Although surprisingly citrus is not the most acidic of foods. My acupuncture doc gave me a list of acidic vs. alkaline foods, which can also be found online.
I think chemo affects every part of your body, and whatever part is already marginally having problems, those problems will be exacerbated, for a while anyway. Just my opinion!
Amanda, I hope you have a wonderful Christmas and a healthy happy New Year!
Talk again soon, I hope,
Mary
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Welcome back Amanda. Thanks for the tip on cold mitts. I hope my hospital has those here.
It is always the flu season here in Manila every holiday season too. It is good yours is almost gone in time for Christmas. I wasnt able to get a flu shot before my chemo so i am being extra careful and avoid crowded places. I always try to wear my dust mask to avoid allergens.
I dont know about indigestion but i consistently experienced constipation for 2 days after each FEC infusion. I dont know if it is the chemo drugs or the steroid and anti nausea meds that go with it. I always lose my appetite as I feel constipated and what i do is drink lots of green tea and eat prunes together with my small meals of fruits and veggies. After the effects of the drugs wear off, i slowly regain my appetite and become normal again after a week.
Our family Christmas traditions are still very much alive and my mother, sister and I take turns in playing host for Christmas lunch or dinner. We stay at home, giving gifts to several godchildren who usually come in throngs throughout the day. Often, in our parent's house, the whole clan of father's relatives gather and have parties and parlor games for the kids. This goes the same during New Year, but with a different clan, mother's side, this time. Since most of the kids are grownups, we usually agree to meet at an amusement park, a mall, a resort, or by the Manila Bay seaside to watch the beautiful sunset and spend the rest of the afternoon until early evening strolling, taking pictures, eating, giving gifts and playing games.
I wish you and your family the Happiest, Merriest, Healthiest and Best Christmas ever and a Prosperous New Year and beyond!
Hugs,
Gina
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Hello Gina,
I have just read your post. I do not think that ginger candies will be doing you any good. They are probably full of sugar and will give you mouth ulcers.
I would not worry about eating organic eggs. Eggs are very nutritious and a good source of protein. If you think they will help you get through chemotherapy, then that is fine. If it were me I would just keep my food very simple, vegetables, fish, fruit and whatever you think helps you.
Try not to worry and try to keep everything simple.
I do hope you manage to have an enjoyable Christmas, even though this is a challenging time for you.
Fond thoughts.
Sylvia xxxx
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Hello Amanda,
I was so happy to have you pop in. it is always good to hear from a fellow Brit. We so need in the UK to form a strong sisterhood such as there is in the US, but it is quite difficult.
Thank you for popping in to support those going through treatment and are having a challenging time.
Thank you for your information about cold mitts. I think it is very important for those newly diagnosed and facing chemotherapy to organise themselves as much as they can about what they would like and what they would prefer not to have during treatment, for example, they need to think about hair loss and whether they can have cold caps during treatment to avoid this. They need to think about whether they want somehow to have hands and feet iced in order to avoid hand and foot syndrome or neuropathy. They need to know whether they will automatically be given Neulasta to avoid low white blood cell count. There are many things to think about, so if that were me I would have a notebook, write all these things down and discuss them with my oncologist.
I was sorry to read that you have awful flu. I know there is a lot of it going around at the moment. The temperature is too changeable and it is not doing us any good. I do hope you will be feeling better soon. I have managed to avoid all flu bugs and colds so far and I have not had a flu jab for sometime. I have reservations about them. I have taken some echinacea tincture over the past months and it does seem to keep colds at bay. At one point when I was feeling a bit weary I bought a bottle of astragalus capsules and took those. They are an immune booster and I took them regularly when I was going through treatment.
I do hope someone will post in if they have any information or experience of indegestion, post treatment. I think it is a good idea to mention this at your next review or talk to your GP about it.
Like you, Raymond and I will be spending a quiet Christmas Day. We do not believe in all the Christmas madness that is getting worse and worse. There is too much emphasis on eating and drinking, especially when we have a serious obesity problem, not to mention an epidemic of diabetes.
I do hope you have a nice time at your dinner and dance with your daughter in the New Year. Are you making any New Year resolutions?
Take care, Amanda, and stay with us. I wish you and yours a very happy Christmas and a very happy, healthy, New Year.
Fond thoughts.
Sylvia xxxx
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