Calling all triple negative breast cancer patients in the UK
Comments
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Hi, Sarah
I did look at the product you and your mum were eyeing on Amazon. It looks like it could be called wig-in-a-can, since it sprays fibers onto your head and fills in bare spots. I know it's very important to your mum to keep her hair, but is it really worth it? She must remember that her hair will come back when treatment is over, it may look different for a while but eventually it will return to what it is now. I'm sure she can probably get a nice wig free of charge through the Cancer Society, at least we do here. On the other hand, it does seem that the cold-capping is working since she still has some hair, I don't believe it ever works 100%. The really important thing is that she stays as healthy as possible throughout all this, so there is less ground to make up later. As you know, I was also hospitalized with neutropenia, and that really takes the oomph out of one, it is a long road back from that. She is so very lucky to have you to care for her, bless you for all your loving kindnesses to her.
Talk to you later, love,
Mary
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Hi, Adagio
I am so sorry you are still being plagued with this itching and that it has gotten even worse. I was wondering if you took your trip to Mexico? I thought perhaps being in the sunlight would have helped you. I am at a loss as far as advising you. All I know of this subject is that my husband had severe eczema attacks and the only thing that helped him was a UVB light which I purchased online. No doctor ever prescribed it, I learned of it on my own. It helped him and very quickly too. Even after I told his dermatologist what a dramatic difference it made, she had nothing to say. Very strange.
Have you tried lying in a tanning bed? That is a different kind of light ray but can also help with skin miseries, taken in small doses.
I do hope you can get to the bottom of it, and get some relief. You must be in such misery. I wish I could help.
Thinking of you, love, Mary
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Hi, Duchess
I don't blame you for being devastated with your new discovery of complications in your surgery area. I'm sure the thought of going through chemo again is also nerve-wracking, however, I do believe the docs have learned a lot over the last 20 years. They are wiser about how to give us these drugs, and they are more cognizant of the side effects. Much has happened in the cancer field just since I was treated about 4 years ago.
Please do stay in touch and let us know how you are progressing. Also, Sylvia has posted her story here on the thread, she has been living a long time since diagnosis. And living very well.
Talk to you again soon, Mary
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Hello Mary,
Thank you for your latest post. I agree with you about all the problems we seem to be having at the moment. Like you, I think we are all fed up with the long gloomy months and need a bit of relief. This week it has been raining virtually every day and today it was unrelenting. Raymond and I had to go into town to do a bit of shopping at our local natural food store, called Mother Earth, and we got soaked. All these minor things will pass and we shall get to enjoy spring and summer. Remember, we are all cancer survivors.
I do feel for you that you are on your own and are not feeling well. It is true that people today are obsessed with themselves and want to talk mainly about themselves and their own problems and only half listen to what you have to say. I know that I am very lucky to have a caring husband and the thought of being without him really frightens me. I do hope you will soon be back to feeling better.
I would not worry about keeping to your usual diet of fish, nuts, fruits and green veg. Eat what you feel like. Soup, canned peaches and yoghurt seems quite good to me. Do you have any brothers or sisters near you? You seem to be very close to a sister-in-law with whom you go travelling.
I think people should be looking in on you and making sure you are alright.
As for the list of chemotherapy drugs that I posted, I did not mean you to read them from A to Z. I just came across them and thought it would be useful for everyone as a reference. If they make a note of the link they can click on any drug they want to know about and get a very good and simple description of it. With reference to you, it caught my attention because the drug asparagine was listed there as already in use for cancer treatment and the article I read about trials on mice made me assume it had not been passed for use. I can understand that you did not feel like reading it. I shall try to remember to post the link to that list from time to time.
I felt deep sympathy for Duchess60 and all that she is going through after all these years.
I do hope you manage to get your bit of shopping and that you get back safely. I understand that you have specific food items that you want to purchase. I am the same. I use Mother Earth quite a bit and buy fresh sauerkraut, Sojade live culture organic soy yoghurt, organic tempeh, miso in a jar, Clipper's organic green leaf tea, different seeds, and our treat, Montezuma 100% dark chocolate. The bulk of my shopping is elsewhere and is mainly fruit and vegetables, organic when I can find them. I also buy frozen wild salmon, frozen cold water prawns on the shell. Organic eggs and a few other bits and pieces.
I was sorry to read that you are chasing a mouse. I am sure you are going to win that battle.
I am still reading the Dental Diet and am at chapter 10 which has some interesting charts that I hope to put on the thread some day soon.
I am not looking forward to next week. Tuesday is dentist day, Thursday I am at my friend's funeral, and Friday I am at the hospital to have the further incision done.
Have you done some light hearted reading while you have been unwell or have you felt just too tired?
I am sending you all my love and best wishes.
Sylvia xxxx
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Hello Mary,
Just to let you know I am thinking of you and wishing you better.
Love.
Sylvia xxxx
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Hello adagio,
Just to let you know I am thinking of you and wishing you better.
Love.
Sylvia xxxx
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Thank you so much for replying. My mother died when I was 19 of breast cancer which spread to her lungs. My grandmother on my fathers side also dies in her 50’s . I cannot remember what drugs I was on 20 years ago as I tried to forget. My phylosphy on life is live and laugh every day which I have always done.
My current treatment is every three weeks and they are putting me on Docetaxel and Carboplatin. I live in Suffolk with my own business which is proving quite difficult
Can I just say that I am feeling better just being able to put this out there and think you are all brilliant. Thanks for the support and hope everyone has a great outcome and we all come out smiling. Xx
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Happy Valentines Day to all you wonderful ladies
Sending you all eternal love and happiness !
Big cuddles to all !
Lots of Love
Sarah & Koko
xx
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Hi Mary,
Im so sorry you are feeling alone, please remember whenever you are feeling like this you have a wonderful community of friends here to support you in any way we can. If you want to have those sweet peaches you have yourself some sweet peaches ! Ive mentioned this before, but do try mindful meditation, focus on doing things that make you happy. As sylvia asked, do you have an family members that could check in on you? I think just a little chat to see how you're feeling and doing would put you at ease too !
Perhaps join a class of an activity you like, you will meet lovely people who will share the same interests as you. I really hope you feel better soon. Don't worry spring is approaching once the sun is out and shining you will be feeling better about things !
Kindest,
Sarah x
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Hi Mary
I just saw you last post - thank you for your kind words. Its so funny to me when people tell me she's lucky to have my brother and I to take care of her, surely its just a natural instinct and obligation ( in my opinion ) to want to take care of someone who gave you life and gave you A life. I never understood this until i started volunteering at an Elderly Care Home years ago ( between the age of 13 to 18 - the care home shut down when i was 18 ) here in the UK. Its such a stark difference to the middle east ( where I'm originally from ). Even though I grew up in London it never dawned on me to not take care of family in time of illness. The majority of the elders at the home just wanted company, they had families but were just cast off as a liability because nobody here seems to have the "time" to sit with anyone and ask them how their day was.
Its such a shame because they were all the sweetest most interesting people with soooo many stories to share! I found it heartbreaking and i really struggled with how they were so lonely. Especially because i wasn't used to it as in the middle east you are always around family and if they are too old to live alone, they will live with one of their older children or their sibling which i think is a concept thats not popular here. Ofcourse there are the minority that may not have families, but you best believe their neighbours, community etc will be there to check on them, provide them with company, help around the house, food etc. So I'm truly sorry you are going through this I really do feel for you, however I hope you know you have all of us here checking up on you !
sending you big warm cuddles !!I also laughed at the comment you made about the product on amazon being a wig in a can ! - I just signed up to amazon prime so i ended up buying it along with another brand nanogen hair fibres ( i read about it on the rupunzel project ) its literally a bottle shaker with powder inside. Mum hasn't tried it yet she said she isn't going to use it unless she has an outing. Also she said her scalp has been burning and itching alot so better not to irritate it with the fibres. I noticed her scalps is quite red too, she's lost alot of her hair at the back she's more or less bald. but then she thin hair all over. CC seemed to work to a degree, ( over at the CC thread its worked miracles on all the ladies so happy for them !! ) Her shedding has stopped, but she isn't keen on a wig, it either her hair or no hair. Girlfriend is extreme, what can i say.
Speaking of wigs - i walked into the wig boutique her onco recommended and walked right out.. Their wigs are like £3000.00. Never realised they were so pricey. Its sad because its a company that works directly with the hospital i felt they were exploiting their patients in a way, because they were so keen to get mum in for a wig fitting but she wasn't bothered but i went any just to check it out incase she wanted a wig. But again, there is only a limited amount of ppl at the hospital that can afford that price tag, i just didn't think it was fair, so didn't feel right to even consult with them! Plus a woman who can rock a bald head confidently is forever chic in my book !
Sending you lots of love !
Sarah x
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Hello Everyone,
Sarah, I really loved the picture of you and your Mom. You look so alike, and you must be such a comfort to her.
Sylvia, I'm sorry to hear about your difficult week coming up. You'll definitely be in our thoughts again. I need to go to the dentist myself, but can't quite work up the courage yet, which is just ridiculous. Also, I laughed out loud at your "soup of nothing" comment.
Adagio, I saw what looked like good advice from Sylvia about your skin troubles. I hope you get some relief soon
Mary, I wish you had some delivery options. I feel terrible that you're sick and that folks aren't looking in on you. You're so right. I always try to be grateful that I have help at home when I don't feel well. Keep eating so you can get strong again. Keep telling us how you're doing when you can.
Duchess, welcome. You will find some wonderful support here.
Pam
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Hello Duchess60,
I was so sorry to learn that your mother had died of breast cancer that had spread to her lungs when you were only nineteen. That must have been so traumatic for you. Did your paternal grandmother also die of breast cancer? My maternal grandmother died of breast cancer that had spread but I think she was about seventy.
As for the drugs that you had twenty years ago I can understand that you have forgotten them, but the hospital will have them on record, because there is only so much that you can have of any cancer drug. You probably had what is termed the first generation of drugs and were probably any of the following – epirubicin, doxorubicin, cyclophosphomide, fluorouracil, methotrexate. They have been around a long time but are still in use.
I like your philosophy of life is one we should all probably adopt, but some days get the better of us and we find it hard to laugh.
The drugs you are having are more recent. Docetaxel (Taxotere) belongs to the taxane group of drugs and I had it in 2005/6 every three weeks for three months. As for carboplatin, that belongs to the platins group of drugs and is also more recent than those older ones quoted.
I do hope all goes well with you on these two drugs.
I was interested to know that you live in Suffolk, as I initially started this thread way back in 2010 because I thought we were in the dark ages for cancer treatment. Even now, we seem to lag behind other countries. The thread now has people from all different parts of the world.
I was so glad to know that you feel better from being able to express your feelings on the thread. We all realise here what we go through and also that other people who have not been through it cannot really understand what we go through.
Keep smiling and laughing and I hope you will not have too many problems with your own business during this cancer journey.
Love.
Sylvia xxxx
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Hello Sarah,
I was reading your post to Mary. It is true that there a lot of lonely elderly people in the UK. I keep reading how social isolation is the biggest killer in society. We do not have the extended families that we used to. I grew up with my maternal grandparents, my mother's sister and he family on the same street and all the aunts, uncles and cousins living locally. It was when children started to leave home and their environment that life became more problematic. Children's higher education and then jobs took them all over the country and indeed all over the world. I left London when I was twenty for university and never went back to live, but made regular visits.
I have seen both sides of the equation living in an apartment complex in Devon since retirement. I have seen children who only turn up for the inheritances and others who are completely devoted to their parents and visit regularly.
I can imagine that coming from a middle eastern country that it was quite a shock here. We can tell from Hanieh in Iran how close her family is.
It is only my own opinion, but I do not like the sound of that product in a bottle shaker with powder. I think you mum is right not to use it. Let the hair fall out naturally. Her scalp will be very sensitive from the treatment and very dry. I dealt with it by regularly rubbing pure avocado oil into it before washing it and washing it gently with a little baby Johnson shampoo. The avocado oil I used was organic oil that is used for salad dressing etc. It is great for the skin as well. You can rub a little onto your face and wash it through with water. Avocado oil is apparently the only oil with which you can do this.
As for wigs, you are entitled to have a least one wig, I was told two, on the NHS but you do not have to have an NHS wig. I got mine at the wig department of House of Fraser and they dealt with any paperwork. You need to get a wig made of artificial hair and to wash it regularly. The wig department sells a special wash for the wig.
Make sure you consult your oncologist about wigs. Patients do not have to pay for them.
Wishing you and your mum all the best.
Sylvia xxxx
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Hello Pam,
Thank you for popping in. I am glad to know you are fine. Thank you for your kind thoughts for me for next week.
I know you are a great reader and I think you would fine the book The Dental Diet – The surprising link between your teeth, real food and life-changing natural health by Dr Steven Lin. There are eleven chapters and the last one has lots of recipes and I know you like cooking. I have lots to post about this when I can get to it.
Today on the news has been all about processed food and a connection with cancer. I think we all know that from the Mediterranean/Rainbow diet.
Thinking of you.
Love.
Sylvia xxxx
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Thanks Mary and Sylvia for your lovely messages. I am starting Chemo next week and am having to have a heart scan and a clip inserted in my tumour. Not looking forward to any of it but reading the posts is really helping me. You are a very inspirational lot out there. Girl power. My partner is great and has been so loving and kind and feel sorry for him that he is going through it too and feeling so helpless.
Will be posting as I progress. Thanks once again.
Duchess6
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Hi Sylvia
Only just seen your long post and thank you so much for all your thoughts and comments. I wondered if you or all these lovely ladies have fasted before and after chemo. Heard that it could help but not sure I will have the energy. I have my own business and am always on the go but not sure I can do this but if it really helps am happy to try anything.
wish you well to
duchess60
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Hi Mary
I'm catching up a bit late. So sorry about your flu diagnosis. Good though to have an answer to your ill feelings. I thought we had missed it, but my husband today was diagnosed with the flu. Type B. He did have the flu shot, and though not severely sick, he has kept a low grade (99-100) fever. As a precaution I was given the Tamiflu. All the Dr's are saying that this season is severe and 2 shots are needed. Well, I've had one, so that will have to be it. Hopefully he is better quick and I don't get it at all.
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Hello Duchess60,
I do hope all will go well when you start your chemotherapy next week. Are you having carboplatin and docetaxel combined or one at a time? If you want to look these up the A to Z list from Cancer Research UK is very useful and gives an easy to understand explanation of these drugs. They are listed under their generic names and the brand names. The link is:
http://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs
Is the heart scan an ECG? If so, this is standard procedure and is taken before starting chemotherapy and then after finishing it.
I was interested to read that you said you are going to have a clip inserted into your tumour. Do you know what this is for?
Just tell yourself you are going to be alright and we shall certainly help you all we can.
I have read about the supposed benefits of fasting before and after chemotherapy. I have not experienced it and do not think I would want to do it, but please remember that is my own personal view. Ironically when I was going through chemotherapy I remember being told to have some breakfast, even if it was just something simple like an egg and toast. I just carried on with my normal breakfast routine of a bowl of fresh berries, mainly blackberries, blueberries and raspberries with a small organic banana that was not too ripe. I also had toast (whole wheat) and eggs in some form (organic).
I do remember that my treatment was during lunch time and that someone came to the oncology ward with sandwiches and hot food for patients. I always took something of my own.
Perhaps someone will post in about fasting.
Wishing you all the very best.
Love.
Sylvia xxxx
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HI, Sylvia,
It's been a week and 2 days since this flu bug hit me and I am still down with it. Although most symptoms are gone, I am left with a hacking cough and a feeling of weakness and fatigue after any activity. I look forward to nights and going to bed, I refuse to lay in bed all day. However, I do sit in recliner and lie on couch during the day when necessary, which seems to be most of the time.
I have not done much reading, I have had a nagging headache through much of the time, yesterday was all day long. Also I have just had very scattered fuzzy thinking, not sure what that is from. Food doesn't taste normal, I suppose that is because sense of smell is affected. I did look online at the normal course of progression for this illness, and this is it. "Most symptoms are better within 5 to 7 days, but fatigue and weakness, cough, low appetite and affected sense of smell are pervasive for 1 to 2 weeks longer."
I have passed a lot of time watching the Olympics, I really do enjoy watching Figure Skating, something I could never do in my wildest dreams. The shows come on quite late at night here, so I tape them and watch them the next day, it is a time-passer and if I doze off it doesn't matter.
My friend who dropped off food for me has been stricken with the same bug, at least he didn't get it from me. My brother has some kind of lung infection, and everyone is just sick of being sick.
I'll talk to you again soon, love,
Mary
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Hello Mary,
Thank you for your latest post. I am so sorry to know that you are so poorly. I do hope you will get as much rest as you can and that you will slowly get back to your normal lively self. I did post a nice card for you, but you may have missed it. I do hope your brother will also make a complete recovery.
It seems that everyone with whom I have contact is unwell and below par. It seems that the flu bug has taken hold of so many people. Apparently here in the UK the NHS went for the cheaper version, eight pence cheaper, and it does not work.
I would think that lemon and ginger tea with a good load of Manuka honey would be an effective and comforting drink.
It looks as though adagio is no better because there has been no contact.
There is still no news of Marias and Hanieh.
Thinking of you and sending best wishes.
Love.
Sylvia xxxx
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Hi Sylvia, Mary, Sara and all
Mary, so sorry to hear you are down with flue. It seems to be taking too long. I hope you get better fast.
Sylvia I'm sorry I have not posted recently and I have not been able to keep up with all the posts. In fact, last week one of my aunts died of kidney failure and high blood pressures. I had to travel to another city to attend her funeral and also take care of my mom as losing her young sister was hard on her. Days seem a bit harder than I could manage.
Last Wednesday I had my 4th infusion. Today I can barely stand on my feet because of severe fatigue. My stomach also hurts badly. I hope I get better by tomorrow as I have to attend my classes.
Again I m sorry if I can not contribute to the threat a lot. I can hardly find myself in the mirror. Hope things change faster.
Love
Hanieh
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Hi, Sylvia
I did see your lovely card, thank you so much! I am feeling better each day, things are looking up.
Lemon, ginger and Manuka honey is indeed wonderful. I don't have Manuka honey, but I do have honey from a neighbor.
I just saw that Hanieh has posted, she is having a hard time getting through the death of her aunt along with her infusions, while keeping up with her classes. That is a lot to deal with!
I am going to catch up with some other posts, I will talk to you again soon.
Love, Mary
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HI, Hanieh
I am so very sorry about the death of your aunt, your mother's younger sister. I can see that your mother is looking to you for your support at this time. Meanwhile, the last infusion has left you very weak, I do hope you can get some rest. You are vulnerable to illness yourself at this time, and you say you are feeling very washed out. Perhaps you can skip your classes this week? You have so much else going on.
Don't give me a thought, I am feeling better, a little better every day. There is an epidemic of flu bugs here, we are all looking forward to spring and being done with all these infections.
Please take care of yourself, Hanieh, I know it's very hard to do when you are needed in so many places.
I will talk to you again soon, and think of you so often,
Love, Mary
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Hi, Val
I am sorry your husband came down with the flu, I hope he is soon over it with no complications. And I hope your single flu shot was enough to guard you from it. I am better, it seems to take about 5 days to get over the major symptoms, and then it's a matter of getting over the tiredness and weakness. But that does get a better each day. I push myself a little more each day, and can tell when enough is enough, every day I can push farther.
We are having strange weather, Thursday it was 80 degrees, today it is snowing and cold! I like snow in the winter so I prefer this to the unnatural hot temperature in February.
Take care of yourself! Talk to you soon,
Love, Mary
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Hi Duchess
Things are moving along for you, yes, I had the heart test too. It checks if your heart is fit for the chemotherapy. I suppose the clip in your tumor is to make it easier to check the size of it as you go through chemo?
I don't know about fasting before chemo, I am not fond of fasting at any time since I like to eat. However, I found myself unable to eat much as I went through chemo. I do not advise it, I lost too much weight and muscle mass too. But I suppose what you are talking about is just to go to chemo with an empty stomach, I cannot logically see where it would matter much, but I don't really know.
You will figure things out as you move through these next months, try to stay very hydrated and eat as well as you can. I am sorry too for your partner, men like to fix things and when they can't fix it they feel helpless. However, he will be a big help to you as you move through the next months.
Talk to you again soon, love, Mary
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Good Morning Sylvia,
I've not posted on here for over a year so thought I would come and post looking back at the whole cancer journey Liz and I have been on over the last 6.5 years. I have still skipped through some of the comments on this thread as I do still remember a couple of posters on her.
An update first. Liz is now 48. The chemo has really damaged her body and joints. She cannot walk more than 1.5 miles. Her knee's are in a bad way. she had one operated on last year but has not helped. She sleeps in pain most nights mainly in her knee's. She has insomnia but gets to sleep about 4am. she can no longer go jive dancing because of the twisting of her knee joints but has taken up line dancing. Liz also has problems stretching her arms above her head, this is because of the operation and being tight across her chest.
If we do go for a long walk (1.5 miles) she will be in a lot of pain 2 days later in her joints. Liz gets up at around 11am so still gets 6 to 8 hours sleep each night.
We have had a motorhome for a few years and been to France 3 times but either our son (now 17), Liz's knee operation or other things have got in the way of us travelling but this year should be different (hopefully)
We are off to the Canary Islands for a weeks holiday soon then off to Florida to visit friends in April.
When We found out Liz had cancer I read everything I could find on triple negative breast cancer and read this thread from page one to the last page which was about page 140 at the time. I think everyone that was posting then have all gone now.
4 years ago Liz's best friend found out she had stage 4 ovarian cancer. She died nearly 2 years ago and in our opinion completely messed up the last 2 years of her life as she had 3 children and did everything wrong.
When Liz found out she had cancer I decided we were going to enjoy life in case she only had a couple of years to live.
Liz had both breasts removed as we both believed if she does not have any breasts then she cannot get breast cancer again! This is not 100% true but it does reduce the risk of getting breast cancer a second time.
Liz had chemotherapy. Only FEC as she did not want Taxol. We decided on the % dose she would have ( The Oncologist said he had never been told by a patient what dosage they wanted before, he was retiring in 6 months time) Liz is very sensitive to drugs so we went for 75%, 75%, 90%, 100%, 75% and 75%. Liz also had radiotherapy.
We purchased a motorhome 4 weeks after the last chemo but it took another 3 months before she was strong enough to go away. When we did go away she was in so much pain with her joints we came back after 2 days.
Liz has had problems with pain in her joints ever since.
We took our son out of school and allowed him to do what ever he wants for the last 3 years. He has Cerable Paulsy (stroke before birth) but mentally he is ok but cannot use his right hand and walks with a slight limp.
He is 18 this year and spends all his time on the computer. We think he plays games all the time but this is not true as he does know a lot of facts he has learnt through YouTube. Looking back we think this was one of the best decisions we ever made.
Despite having the time and the money we have not made the best of the last 5 years. We have had some lovely holidays but I feel we could have done better. If the cancer had come back this would have been our biggest regret not doing as much as we could have done.
On a Facebook group I saw a young married lady supper fit with a 6 year old daughter go from a perfect healthy fit young lady to unable to get out of a chair in 18 months. She never did come to terms with her situation and hated the fact that she concentrated on getting fit again instead of spending time with her husband and daughter.
MY MESSAGE TO ANYONE GOING THROUGH THIS JOURNEY IS.
WHAT WOULD BE YOUR BIGGEST REGRET IF IT DOES COME BACK? If you would have a big regret then change it.
If it does not come back that's great and a bonus.
Peter
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Hello Peter and Liz,
I was so surprised but delighted to find your post this morning, Peter. Thank you for taking the trouble to come back and update us on your cancer journey with Liz that started 6 ½ years ago. You will forever be in my memory because I was so impressed that you had taken the trouble to read from page 1 to page 140 before posting. I have posted about that from time to time on the thread.
I was sorry to read that Liz has been having so much pain following her treatment. On the thread we are always talking about the long-lasting nasty side effects from which a lot of us suffer (perhaps everyone) as a result of all the toxic chemotherapy drugs and radiotherapy damage, not to mention what surgery does to us. At least we do not have the side effects of tamoxifen and aromatase inhibitor drugs that those with hormonal breast cancer have.
I was so sorry to read that Liz's knees are in such a bad way, especially as she is relatively young to have these problems. Knee surgery is very popular but it does seem to bring a lot of problems.
I was sorry to read that she suffers from insomnia because a good peaceful night''s sleep is so important for good health.
She must miss her jive dancing but at least she can do some line dancing. That seems to be something a lot of people enjoy.
I was interested in what you said about Liz having problems stretching her arms above her head. I understand that surgery can cause this. Does she have any lymphoedema in her arms? This is swelling that can become a nuisance. She should have been given exercises to do straight after surgery and physiotherapy if necessary. Even years after treatment you can get lymphoedema and even just the problem with stretching might benefit from some gentle physiotherapy.
It seems that we pay a high price for our treatment but it does keep us alive. It is a laugh to say that doctors are not supposed to do any harm! They do plenty.
I do remember your plans about a motorhome and I was glad to know that you had been to France three times. Which parts did you go to?
I was glad to have news about your son. It is hard to believe he is now 17. How the years fly by.
I do hope this year will be a better year for you and that you will be able to arrange your travelling around Liz's medical appointments.
I do hope you have a lovely time in the Canary Islands and Florida. It will get you away from our dreary weather, which has been particularly awful in the past few months.
It is true that the people on the thread do not stay around for the long haul. I think they are eager to get back to a normal life. What concerns me most about this is that we never know if they are alright and enjoying life, or whether something has happened to them. I think it would be nice if they told us they were moving on and popped back in from time to time. Some of them do this and Tom (Breastcancerhusband) does this from time to time and lets us know that his wife is doing well as is the baby that was born during her treatment.
I am sure you have done everything possible to reduce the risk of Liz's breast cancer coming back.
I was interested to know that Liz only had the FEC regime and did not have paclitaxel (Taxol). I tend to think that the taxane drugs, the newer regime drugs compared to FEC, do more damage. I know that women find them very hard. I was most impressed to know that you had decided on the dosage that Liz would have for her chemotherapy. I bet that did surprise your oncologist but I do believe it is up to patients to decide what they will and will not do. They are the ones who have to suffer the consequences of other people's decisions.
Does Liz take anything for her joint pains?
Thank you for all the news about your son. I am glad to know that he has benefited from schooling himself for the past three years.
I am sure you have done your very best to make your life as happy and meaningful as you can, given the circumstances.
I do hope you will spend as much time as you can doing the things that bring you happiness and contentment.
How are things going on your Facebook group? On this forum in general I get very concerned about the number of people being diagnosed with breast cancer, especially with TNBC. I am sure the percentage of those must have increased.
I was interested in the message that you have put at the end of your post and I hope we shall get some replies.
Your message made me start thinking about regrets. I am now asking myself what would be my biggest regret if mine came back after 12 ½ years being in the clear. I find it very difficult to answer that. I am glad I started this thread back in September 2010 and that was five years after my own diagnosis. I have spent a lot of time being a volunteer director here where I live and think that perhaps I should have spent more time on myself. My husband, Raymond, and I have taken it in turns to be volunteer directors for the past 16 years when we came to live here in Devon. It is a thankless task and we are probably too efficient at it! I am always thinking about the what ifs in life?!!
Thank you for such a great post, Peter. It will always be a pleasure to hear from you. I have never forgotten about your chocolate fountain business and it give me great pleasure to hear from a fellow Brit.
Very best wishes.
Sylvia xx
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Hello Hanieh,
It was so good to have you back on the thread.
You do not have to say sorry about not having posted recently. Take your time and try to catch up on the posts when you can, so that you do not miss important information.
I was so sorry to read that one of your aunts had died from kidney failure and high blood pressure. I can understand the sadness and stress that you have been going through. I know you will take care of your mum, as she mourns the loss of her young sister. Did that sister have a serious chronic illness? I can understand how the days have been more difficult than you can manage.
I was sad to read that the fourth infusion had been so hard on you. I get the impression that the taxanes and carboplatin are very hard on the body.
I do hope you managed to get some sleep and were able to rest your body. Remember that the fatigue does build up as the chemotherapy treatment progresses. I do hope your stomach is not hurting so much. Are you taking anything to help it? Please do not overdo things and do not go to your classes if you do not feel up to it.
Make sure to keep well hydrated and just go to sleep when you feel the need.
Thinking of you and sending all my love.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I was glad to know that you are feeling better and that things are looking up.
I am sure the honey from your neighbour is just as good as Manuka honey. I cannot believe the price of it here. I do not buy it.
It was good to see Hanieh back on the thread and I do hope she will make good progress.
There is so much bad news hitting her lately that I do not know how she is managing to cope. I do hope she will take care of herself.
I am not looking forward to this week, but somehow taking each day as it comes I shall get through it.
I hope you will enjoy the post from Peter. He does a lot of thinking.
I do hope we shall hear from Marias sometime soon. She did not have the treatment until February 7th so that is not very long ago.
The latest headlines on all of the papers etc. is about how processed food is a cause of cancer. It is deficient in lots of vitamins and minerals, so it makes sense. I also saw a headline about how yoghurt cures cancer. These headlines should not be allowed.
I have just found a PM from a woman diagnosed with hyperparathyroidism and facing surgery. She posted on Hyperparathyroidism and breast cancer and found all my posts on there with Sam52. All that was how I first got on this forum and then decided to create this thread.
Keep up your good work.
Love.
Sylvia xxxx
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Hello Sylvia,
Liz doesn't have any lymphedema. Liz does exercise her arms above her head but not as often as she should now she is not jive dancing.
We go to the South of France as its warmer. We have been to Lake Annacy, and Mont Blanc. All along the Mediterranean coast, through Monaco etc and then back up through the centre of France.
We have also been twice to the Western side of France around Bordeaux and the Archachon basin.
We may consider buying a small house in a Spanish village and spend the winters there as Liz gets less pain in the summer.
Liz has no medical appointments as cancer patients are dismissed after 5 years at our hospital.
I saw Toms last post to say everything is going well with his wife and baby.
Liz has tried various herbal items and oils for her joints but none help.
The Facebook group is a private group and is made up of people that went through breast cancer and started Chemo October and November 2011. The group started on either this website or a similar one but the women soon moved to Facebook as its a lot easier to use and they can say what they want.
I have been meaning to post an update for the last 12 months but never seem to have got round to it.
but the main reason for posting was to get that message across.
To be honest that statement is aimed more at people under 60 or with a family. I am sure even if you regretted not travelling to Australia for instance you would not be doing it now as I know you do not like travelling to far. Not meaning to offend anyone!
I do not know how many people on this thread or how many people that view this message it applies too but I think its an important message.
I will repeat it again
"WHAT WOULD BE YOUR BIGGEST REGRET IF YOUR CANCER COME BACK?" If you would have a big regret then change it.
We often here people say " I wished I had done that when I was younger" Well getting cancer is your chance to look at your life and change it for the better.
On a different note and for Sylvia,
I see Mr Trump has not been shot yet! I actually like him for trying to do something. He has done a lot for the comedians around the world as most jokes are based around him. a lot better than Ronald Reagan or George Bush.
As for the NHS until it goes back to what it was started for, basic health care to everyone it will always be in trouble.
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