Calling all triple negative breast cancer patients in the UK
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Hi Sylvia,
Getting a one year residence in Turkey is not hard if you buy a house here. When I go back to Iran I will sell my car and the jewellery I have to buy an apartment here. Also, if I find a job offer, I may get my residence without the need to buy a house.
Finding a job here as a college language here is a piece of cake for people who are English native speakers. But for me I can not say it's that easy but with my having MA in English, 13 years experience of teaching English and Ielts score of 8, I have high chances of getting a job here as the Turkish people are really weak in English.
Permanent residence in Canada is somehow more difficult for me because of my medical history. Yet, having reached the point that I really want to live abroad, Im serious about my decisions. I can not see any good prospects for my daughter in Iran. Inflation is rising speedily here and how much we work doesn't have to do anything with our welfare. There is no peace in Iran.
I will have my 3 months checkup in a month. I hope everything goes well.
Love
Hanieh
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Hello Jags,
It was nice to hear from you and I was sorry that you have not been well. I do hope you are feeling better now. I also understand that it has been a busy time with your daughter doing her MBA exams.
It is true that the thread has been busy and also that there have been quite a few new people posting. We all know the turmoil we go through and there is so much to get sorted out before we finally settle down and start going through our treatment.
I was interested to know that you do drink green tulsi tea but that you have the one which has ginger and turmeric in it. I shall certainly try that sometime. For the moment I have tried just plain tulsi tea and then the tulsi green tea. I do find it very relaxing. I understand it is also called Holy Basil tea. This is what I have been told.
I do understand about the toll that the breast cancer treatment takes on us and that afterwards we are not quite the same person as we were before. All we can do is just do our best and relax as much as we can.
You are right about keeping busy. It certainly takes your mind off cancer and in a way the busyness helps us to relax.
Wishing you all the best.
Sylvia xxxx
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Hello Kath,
I was glad to hear from you and amazed at the distance you have covered in a week for your work. What are the roads like in Australia? Here driving can be a nightmare because of busy congested roads.
I was glad to know you have been feeling well. I would think that the problem with the spine is due to all that driving. There is nothing worse than being in a car for a long time. Try not to worry, but if you have any concerns get it checked out.
You certainly lost a lot of weight during chemotherapy, so if I were you I would aim to be the ideal weight for your height.
I can understand how you feel as you wait for your mammogram in early September. All of us on the thread can identify with that anxiety. Just try to tell yourself that it is done to help you.
It is so important to live normally in between having check ups etc. As I keep saying, worry serves no purpose.
I was very sorry to read about the damage that you had to your car. I know the money was a lot, but at least you are alright. Were you able to get some help from your car insurance? It was sad for the kangaroo. Are there lots of these kinds of accidents where you are?
Hang in there now because your winter is nearly finished. I do watch the international weather on the French world news channel here, so I have been looking at what it is where you are. Look forward to Spring now.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your latest posts and for your detailed description of your drive through Rocky Mountain National Park. It all sounds very lovely and I am so glad that you enjoyed it all. It will probably take time to recover from it all.
When Raymond and I were in Canada we flew from Montreal to Vancouver and then went on a drive through the Canadian Rockies and it is something I shall never forget. When you see mountains like this it makes you feel very small and insignificant as a human being.
Like you, here in Exmouth, we do seem to be missing a lot of the rain but we did have one downpour which has helped the grass and flowerbeds. It is a lot cooler as well.
Thank you for the lovely photographs. You look really good.
Make sure you get the rest you need and take your time trying to catch up.
You will see that Pam has written to say she is taking a break from the forum. I shall miss her posts but hope she will pop in from time to time. You will also see that Hanieh has come back and she is really going through a lot in her personal life.
That is all for now.
Thinking of you.
Love.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post. I do hope that you manage to get that one year residence in Turkey and that all will workout well for you. I know that you have great strength and determination and understand that you want to do the best for your daughter. I am sure that you will get work teaching English.
I do admire your determination to try to get to Canada. Let us hope it will workout for you.
When I listen to the news which I do every day I find the state of the world of great concern. I do wonder where we are going and how it will all end. There are lots of problems in the UK, as there are elsewhere.
I do hope you will have good news when you have your three-months check up. You deserve some peace and worry free years after all you have been through.
Thinking of you.
Love.
Sylvia xxxx
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Hello Cooncat (aka Kath?), thank you for asking and I am recovering well from surgery. It feels like it is slowly but I often get comments on how well I am doing so soon. I see my surgeon again tomorrow. I have fluid to be drained. I am also seeing a physio to check that I am exercising correctly. I am very fearful of lymphedema.
Met the radiation oncologist earlier in the week who is also concerned lymphedema. So much so they aren't going to irradiate the armpit. Instead they are going to do the chest wall again! Interesting the same guy told me 5 years ago they can't do the same location twice (except in some special cases). So I am a special case! Planning meeting Thursday and start radiation on 28/08. Be pleased to get started.
The kangaroos are rife here in Albury. We live close to the outskirts of suburbia and often have multiple Roos feeding on the lawn or the vacant block next door. They navigate bitchmum roads and concrete walkways to get here, although I can see the bush from my back yard. Around town you should be driving slow enough to avoid them - unless they come at you - as you mentioned. One year we had 5 friends have major incidents with Roos on the highways, luckily no humans died. It's sad cause as a beast I like them. We have an big old Buck comes by feeding on his own quite often. I think he is blind cause when you call out he never looks straight at you. Always on his own.
I like you Cooncat will be glad when spring comes and most on this thread will be facing Autumn. I think I have been lucky doing wigs and things throughout winter. Plus easy to hide my mastectomy with jumpers and scarves. Hopefully by the time it heats up I will have totally healed, adapted to my new me and have my prosthesis sorted for the days I want breasts
!
Wishing you all good karma and happy days xx
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Hello CocoonCat,
It was nice to see you back on the thread, in fact the Australian contingent all seem to have posted at the same time. We had a post from Kath (Kathseward) and also from Helenlouise (Helen). As for you, CocoonCat, I do not think you sign any other name.
I know that Australia is a huge country so I do not know if the three of you are near to one another. Many months ago I did post maps of different countries so that we could see where we all were. I know that Kath is in Broken Hill and HelenLouise is somewhere in New South Wales. Where are you exactly?
For me, here in Exmouth, England, both kangaroos and armadillos seem exotic. We have foxes, badgers, and squirrels. They seem very tame but we have had cases of foxes biting people in some parts of the country. The squirrels are very tame and the badgers can be very destructive.
I was interested to read what you had to say about your experiences with carboplatin. As I have said before, with reference to AC, Adriamycin and Cytoxan, (doxorubicin and cyclophosphomide) as compared to the taxane drugs, Taxotere and Taxol, it is difficult to come to a definite conclusion. Some find AC difficult but I get the impression a lot of people find T, the taxanes, more challenging. It is well known now that the taxanes cause neuropathy in the hands or feet, and that they also cause lymphoedema. These are two nasty side effects.
It looks as though carboplatin can be very challenging, having low red or white blood cells is a nasty side effect, but I think this can happen with any of the chemotherapy regimens used. This is why blood tests are taken every time before a chemotherapy session to make sure all is in order before you go ahead. If not, you do not proceed to the next infusion. It must be awful to have to end up in hospital for treatment for neutropenia or transfusions to increase the red blood cells, in the midst of having chemotherapy. I feel very lucky that I did not have any of these problems.
I was interested in your having said that you were a recluse online as well in real life. I do hope we can be like a bit of a family for you.
I was glad to know that you have now finished your chemotherapy. Congratulations on that. Please stay with us and let us know when you will be having surgery.
Why not tell us a little about yourself?
Sending you fond thoughts.
Sylvia xxxx
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Hello Helen,
Thank you for the post. CocoonCat is not Kath. Kath (Kathseward) is another Australian. There are now three of you and Kath has been with us the longest of the Australian group.
I do hope all will go well when you see your consultant surgeon tomorrow and I was glad to know that you are slowly recovering from surgery.
It is good to know that you are seeing a physiotherapist to check that you are doing your exercises correctly. I understand your concern about lymphoedema, as it is quite common and can be caused through all three phases of the breast cancer journey, surgery, chemotherapy and radiotherapy.
I was interested to read that your oncologist is concerned about lymphoedema and to such an extent that he will not be doing radiotherapy under the armpit. I noticed from your notes about your treatment that you do not mention lymph nodes being affected anywhere during your various treatments. Did you not have any lymph nodes affected? You might want to discuss about radiation on the chest wall because my understanding is that you can get lymphoedema in this part of the body as well. I also thought that you could not do radiotherapy on the same place twice. I have read that lymphoedema in the chest area can be more difficult than lymphoedema in the arm.
You might want to read a book entitled Let's Talk Lymphoedema – The essential guide to everything you need to know by Professor Peter Mortimer and Gemma Levine. It is very easy to read and I read it from cover to cover. Professor Peter Mortimer is a consultant dermatologist working at both St George's Hospital and The Royal Marsden Hospital in London. He has spent most of his professional life in the research and clinical practice of lymphoedema and related disorders of the lymphatic system. He is internationally recognised for his work in lymphoedema. Gemma Levine has lived with lymphoedema for a number of years after breast cancer. The book is as recent as 2017. I do hope this helps you.
I was looking at your details and saw that back in 2013 you were diagnosed with DCIS that was ER+ and PR+. I was wondering whether you were put on anti-hormonal drugs, such as tamoxifen or aromatase inhibitors such as Arimidex. Here in the UK they give these to hormonal breast cancer patients after treatment for five to ten years and I have read that with this treatment you can end up with triple negative breast cancer. My own oncologist told me that cancer cells mutate all the time and that my cancer did not necessarily start as negative.
I am learning so much about kangaroos these days. I am now trying to imagine looking out of my window and seeing kangaroos on the lawn.
It is interesting as we all live through the different seasons. We are nearing the end of summer and it is now dark by nine o'clock. The schools will be back at the beginning of September. I am very glad that we do not have the excessive heat we had for so many weeks, but we still have not had enough rain.
Take care of yourself and give yourself time to recover.
Very best wishes.
Sylvia xxxx
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Thanks for setting me straight Sylvia and I apologise Cooncat & Kath for the mix up!
Albury is inland on the border of NSW and Victoria, about 550km / 340 miles. It is a city in the country (rural city) but not outback. As you would know Australia has a lot of outback!
I need to add the node to my profile which was one out of eight from a level two dissection. The node had micro metastasis that had breach the wall of the node. Surgery achieved clear margins. Both medical and radiation oncologists have discussed lymphedema in my arm. I have some swelling already and was sent for scans to rule out DVT. They believe I am more than likely to get lymphedema with radiation to the axillia and have decided not to. I am aware of the nodes in the chest wall hence the radiation there (as these nodes can't be removed by surgery). I haven't heard of lymphedema of the chest. How / can they treat that? Will get the book you suggest.
In 2013 my treatment for DCIS did not include follow up therapy with hormone suppressants only surgery and radiation. Irradiating the same place twice is not normal practice but (according to my oncologist) can be done in some circumstances. I believe side effects can be harder to manage as the area has already been impacted. This time we are using a different technique where I hold my breath (not around in 2013). This will minimise the amount of radiation getting to my heart, which is good news.
Kind regards for now ....0 -
hi Helen
Cocoon cat is another person on the thread also from Oz. I am Kath and based in Broken Hill. I have lots of friends in Albury. It’s a beautiful place
Cheers
Kat
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Hi Kat,
Sorry for confusing you and Cooncat. Yes we like Albury. We may even know people in common. We call it Smallbury! I haven't been to Broken Hill but believe it's a lot more outback being on the edge of the desert. If you are ever heading this way sing out!
Best regards Helen.
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Hello Helen,
Thank you for your latest post and for adding those details.
I shall be thinking of you on August 28th when you begin your radiotherapy. I do hope all will go well and that you will not have any problems. Do you know how much radiotherapy you will have or will it depend on how you cope with it? Please let us know how you get on and please keep in touch.
Thinking of you and sending best wishes.
Sylvia xxxx
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Hello adagio, 53Nancy, and Moth,
Having just heard from all three of our group from Australia, I was wondering how everything was going for the Canadian contingent. It seems quite some time since we heard from you.
I do hope all is well and that you have had a good summer. Here in Exmouth it feels as though it is slowly coming to an end and it is dark at 9 o'clock.
Sending best wishes to all three of you.
Sylvia xxxx
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Hi Sylvia, I'm well. Started radiation treatments on Monday so today is #4/20.
We are having huge forest fires so the skies are hazy all over the province, even down in Vancouver. though we are far from the major fires. Can't see our mountains due to all the haze & we have air quality warnings for people with respiratory conditions. The only good thing about the haze is it's keeping the temperatures down a bit by reflecting the sun's rays. I have noticed the skies getting dark earlier as well. Up near some of the major fires, a couple days ago their street lights turned on at 3pm because it was so dark from the smoke and ash!
I'm going to the beach with my dogs today as my rads aren't till dinner time.0 -
Hello Moth,
Thank you for popping in. I do not envy you all those forest fires. It must be taking a huge toll on people's breathing.
I hope you had a good day at the beach with your dogs.
I do hope you are feeling alright having got through the first week of radiotherapy.
Take it easy during the weekend.
Thinking of you and sending best wishes.
Love.
Sylvia xxxx
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HI, Sylvia
I last posted on the 13th and thought I would get caught up after posting to you, but I didn't. The next week passed very quickly and it was one of the weeks of meetings I attend. I got home Wednesday evening and the next day drove one of my my sister-in-laws to the airport, a 4-hour round trip that turned into a over-5 hour road trip because I stopped at a very large fresh produce stand I was passing by. I have never seen such huge canteloupes, I bought some nice small peaches and summer squash.
I saw the acupuncture doc yesterday and asked him to get me in shape for Alaska, which is coming up Sept. 1st. That is very soon that I will have to pack clothes for very cool weather, even though it is still 90 degrees here. If all goes as planned, I will be in Skagway AL for my birthday on September 5.
There has been so much posting going on, I see that Pam was very kind to let us know that she will be only checking in occasionally because she is moving on and putting BC behind her. It's nice to know that if we want to speak to someone who is not posting much we can always reach out through PMs. Hanieh is busy with a move to Turkey and hopefully to Canada eventually. Adagio has been quiet for a while, I'm sure she has been busy with summer and family. There are now several posters from Australia, it's good to see them communicating. Ellen's mum decided to have a try at chemo, to be continued. Don't want to leave anyone out, I am going to try to get caught up.
We had a small bit of rain this past week, not nearly enough, waiting for more.
I will talk to you again soon, love,
Mary
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Hi, SUSIE
Congratulations on finishing chemo, I think I never said that to you! I'm glad you weren't too badly bothered by it and feel ready to move on with the radiation treatments.
I noticed a post where you asked if anyone knew anything about maintaining mental health. I also felt in need of that in the time-frame after treatment ended and my husband died not long after. I went to a place and tried CBT, Cognitive Behavioral Therapy. I tried it, and perhaps I didn't give it a fair shake, but it just felt like I was being sent home with homework. I was tired and down in the dumps and didn't want to do it, so I quit. I have heard it works for a lot of people; I found much more help, advice and camaraderie on this thread.
Talk to you later, love, Mary
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Hi, HANIEH
You are certainly having a busy, stressful time with all these decisions about work, school, a move to Turkey and a possible move to Canada eventually. It sounds as though you are planning to stay in Turkey at least for a year. Is it possible that as you move further away in time from the cancer diagnosis that it will make things easier for Canada entry? I don't know. So much to think about, I wish you and your family the very best, the world does seem a precarious place; I suppose it has always been so in one way or another but this is the time that has been given to us and we must make the most of it. I will definitely keep lighting candles, they represent my hopes and prayers for your health and happiness. Thanks for your so-kind words too, I do feel as if we are a family here.
Also wishing you a good, uneventful checkup when you go back to doc!
Talk to you later, dear Hanieh,
Love, Mary
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Hi, JAGS
I understand you were not feeling well, perhaps you had the flu or a cold? I remember your daughter helps with your posting and I see she has been busy with MBA tests.
I am 4 years + from diagnosis and still struggle with trying to accept the physical condition I am in now. I saw that you are 58 years old. Since I was 61 at diagnosis, I am also having the aging thing going on. The effects of the chemotherapy (neuropathy) and the aging have effects that I don't like, but I do like the fact that I am here. Anyway, I just wanted to say that for me, acceptance is something I have to work on daily, since many of the people I associate with are the same energetic, active people they were 4 years ago, and now I have trouble keeping up, and have had to quit trying to do so.
I wish I could get in the habit of drinking the healthy green teas. I drink much more tea in the cold weather, I know that it is so good for a person. The green tea with turmeric and ginger sounds good.
I hope you are feeling better, and your daughter gets great scores from her exams!
Hope to hear from you soon, love, Mary
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SYLVIA
A funny little story: You spoke so highly of the Dead Sea Spa Magik Lotion that I looked it up on Amazon. I found what I thought was a decent-sized tube of lotion and ordered it. When I got the shipping notice back I noticed it was coming from England. This surprised me as the total price for the lotion and shipping was about $10 (it was coming from a private seller, and they said it was their last tube of this lotion.) This all seemed so inexpensive that I went back on Amazon, and saw that now the cheapest tube available was over $40! I will keep checking but it doesn't seem to be easily available here, or I haven't found it yet. I finally did receive it in the mail and it is a 75 ml. tube, so not very big, but arrived in good shape and I look forward to using it.
Love, Mary
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Hi Mary, I understand it's quite common for people to feel down in the dumps after finishing treatment, which seems counter-intuitive. So sorry about your husband. Mine died, of one of the very nasty cancers, three years ago. That's one of the terrible life events; watching him die of oesophageal cancer was much worse for me than being treated for breast cancer myself.
Susie xx
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Hi Susie
I am very sorry about your husband, it is very painful to watch someone you love suffer, and with that cancer there is not much you can do about it. My husband had several conditions that deteriorated over a few years, and there was also not much to be done about any of them, just manage them until they became unmanageable. I have read that sometimes that kind of stress, the helpless kind that a caregiver feels, can help lead to cancer. I don't know for sure if that's true, but it sounds very possible to me.
I also think that ending treatment is a scary time, while we are having treatment we feel like we are battling the disease. When it ends, suddenly we feel like we are cast out into the cruel world with no weapons, at least that's how I felt. I'm sure some people are just happy to be done. I thought I would be that kind of person, but I wasn't until some time passed.
Have a good weekend! Love, Mary
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Hi PAM
I am also glad you will check back in once in a while, I do feel you are a friend and would love to hear an update just sometimes. I can understand you wanting to move on from here, it's time to go live your life again. You have a job that keeps you busy, a wonderful husband, and a lot of interests.
You wrote such a wonderful synopsis of your experiences in the world of cancer, and treatment, and getting support on this board and others, very good indeed.
I will like to think of you in sunny California, and Ireland, and maybe a winery enjoying life.
Talk to you later, love
Mary
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Hi KATH,
I agree with Sylvia, you have put so many miles of driving in it would be a surprise if your back didn't hurt! You seem to have so much energy, I think you could forget the scary place for now. You probably have aches and pains from your lifestyle, and since you seem to love what you do it is probably something you will have to put up with. Do you have a comfortable seat in car? Maybe you need a little extra cushioning and lumbar support.
Sorry about your car bill, and the Roo too. Here we have the whitetail deer that suddenly appear in front of you, sometimes it seems they have a death wish. I have hit 2 of them in my life, one died and one ran off. It is almost mating season, that is the worst time for them to be running around a lot.
Talk to you soon, love, Mary
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HI, COCOONCAT
I don't think an armadillo in the garden is exotic, it's only obnoxious! They are not native here but have moved up from the south and are a dreadful nuisance. A kangaroo on the road sounds very dangerous, that is a large, muscular animal. Yes, they do seem exotic to me, but I sure would hate to hit one, Kath is probably lucky she was not injured. I have hit 2 deer, that is bad enough, and you are right, they do seem suicidal too.
I'm glad you liked my pictures, I do love being in the mountains, I love the weather and the views and just about everything about it. I really am not interested in living in them, I have done that and found that the vistas and views I want are horribly expensive. So I am happy to live somewhere cheaper and go see the views at times. Although a move is not out of the question because of the cooler weather there in the summer, although then there is the snowy winter. Hmmmmm..........
I'm glad you have finished your chemo routine, and I see you will next have surgery. I was a little surprised to learn some months ago that mastectomy is considered minor surgery in the medical world. It doesn't seem minor when it's happening to you, but you can quickly recover for the most part, I suppose that is why the docs think minor. If you have reconstruction, the process is longer and more involved.
Talk to you later, glad you poked your head out, Mary
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Hi HELENLOUISE
I see you are recovering well from surgery and you have had to have fluid drained. I had to have fluid drained from the surgery site too, and I remember the surgeon saying that was a good thing; if it was lymphedema she would not have been able to withdraw fluid. I was never told much about lymphedema until after chemo when my MO put me in Lymphedema Therapy because I complained of pain. The therapist said I didn't have lymphedema, so she worked with me for the torn rotator cuff that I did have. A confusing time.
I also see you are looking forward to Spring, and to getting healed up and finished with radiation. I also use a prosthesis when I go out. it's comfortable.
And I see this was not your first go-around with this BC, I do certainly hope this was the last!!
Talk to you soon, be careful out there, Mary
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HI, MOTH
Wow, the whole West Coast must have fires, it's a terrible thing. I hope the firefighters can get a handle on it soon, I think the last I heard they are making good progress.
I will be flying into Vancouver in a couple of weeks, on my way to Alaska. I have been in BC before and went through the Parks of Banff and Jasper, just the most beautiful places. I remember the wild animals calmly grazing on the side of the road.
What kind of dogs do you have? I love dogs and cats, but have no animals right now. I still miss the ones I had and lost, and I swear my last old cat walks in the room once in a while.
I hope rads goes easily for you, best wishes.
Talk to you soon, Mary
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I wonder what role stress plays in getting cancer. The most recent newspaper article I read dismissed the idea. I had my last clear mammogram while my husband was dying then, two and a half years later --- a time which also saw the death of both my parents and me having to have a knee replacement -- I'd managed to grow an 8cm tumour.
Susie
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Hi Mary,
I have a very old field English Setter (Darwin will be 15 next month) and a 1 year old black lab x. I have been 'in' dogs for years, used to foster for rescues & I like to clicker train for agility & rally obedience. Had three until a while back when first my newfie cross and then my malamute cross died, leaving me with the setter. We adopted the lab while I was on chemo - as my anti-depressant LOL. She's definitely kept me busy!
I know what you mean about missing animals that are gone & how sometimes you think someone is back. We had a cat too and I miss cats. Dh & my kids are all allergic to cats - even though we had one for 15 years. I miss her. She used to curl up by my pillow at night and sometimes I think I hear her purring.
re wildlife - I see coyotes all the time. I live near a golf course and there's a stable coyote pack that lives on the outskirts in the forest. They keep the wild rabbit population down which the golf course likes. Unfortunately outdoor cats here don't do well which people don't seem to understand ;'(
We also have bears here, even in the city. Yesterday I took the dogs for a walk near an urban forest & lake (really urban - it's minutes away from 2 highways) and there was fresh bear scat on the trail. We made sure to make a lot of noise and keep the dogs leashed. An offleash dachshund was killed by a bear on a different urban trail yesterday
There was also a daytime cougar sighting in a nearby area and I've got to say cougars scare me more than bears. Rads are going fine - 1/4 of the way done!
ttfn
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