I've just got home from the election count. I'm involved in processing postal votes which is more relaxed than the main count and is quite a pleasant atmosphere. There's a lot of waiting for votes to come through and time to chat. So you get to know people but you probably wouldn't recognise them in the street.
I was chatting to a lady of about the same age as myself. I am naturally quite positive and enthusiastic and we were talking about our adult children (same ages), homes, jobs and pets. When she turned to me and said 'you have the absolutely perfect life!'.
It really took me back. Of course she doesn't know that I have mbc, that my latest treatment has been pretty hard and had to be suspended for nearly 3 weeks when I caught a cold and my body couldn't cope with the toxicity of the drugs. That the oncologist's registrar wouldn't decrease the dose of the meds until he's seen the results of the scan which I will have to wait 3 weeks for. Knowing that the oncologist wants me on taxol and all that involves. The last 3 months have been pretty hard and having to wait so long for my scan results is so challenging! And that's the politest description I can think of!
She didn't offend me, I just smiled and agreed that I did really have the perfect life. But I just suppose it just shows that you don't always get the full picture when talking to others and what appears perfect isn't always so. Sorry I just wanted to off load!
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Julie2233
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You are so right. People look at us and see the average woman. They have know idea how we feel physically or mentally. I find people look at me and say “but you look so good”. It’s like we have to look thin and bald to be sick. Vent all you want.
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Oh, I know what you mean! When I was first diagnosed people would look at my head as if they didn't believe I had cancer, as I have a very full head of hair. Then I would explain that there are many cancer treatments and that the reason I still have hair is because I have not had chemotherapy.
I’ve had a few instanced where I’ve bumped into old patients of mine...the most recent was in a sauna!!
I retired when I found out about mbc as I was mentally not able to cope....these patients assume I’m having a wonderful retirement and ask me what I’ve been doing like riding my horses travelling etc
Anyway the lady in the sauna started to probe a bit and I wondered if she’d heard any rumours about my health ( they all knew I suffered from back pain) I was a bit curt and said I’d not been well and didn’t want to talk about it....later in the changing rooms she remarked on how slim and fit I looked....and I thought ‘if only you knew’
As you said in your post....never make assumptions about people ....at least I can pass as normal at least for now
I get where you are coming from. People assume I am fit and healthy too. For all intents and purposes I do look very healthy, and I feel well. I am still working and doing my best to lead a relatively normal life. But the disease is always there, and we have to live with it each day.
It’s like most peoples Facebook lives vs. their real lives. Thank you for sharing your story, it is so true. When I’m around people I’m ultra aware that their is way more to their story (good,bad & sad) then they typically share. Me included. ❤️🙏❤️
you just can't share with everyone; my sister still blames me for my condition. every time we speak she reminds me that I refused chemo in the beginning and it makes me upset and doesn't help me at all. we had breast cancer at the same time and she took the full treatment regimen, double mysectomy, everything her doctor ordered. it may or may not have made a difference for me, I just followed the path I felt God was leading me in, as I'm doing now, but blaming is not pretty and uncalled for. why do people feel the need to say "I told you so" to someone fighting for their life?
It is really shocking to learn of how your sister is treating you. It saddens me to hear that. She should not be blaming you for developing metastatic breast cancer. That is really uncalled for and must hurt you deeply. None of us has asked for this disease or done anything to deserve it. Don't people realise that we would love to just turn back the clock and return to our lives before this ugly disease developed?
I didn't ask for this diagnosis in my 30s and to be forced to face the fact that there is currently no cure. I went backwards and forwards to the doctors for a while before I was finally diagnosed. I had blood tests done to find out why I was feeling so rundown and tired (a severe vitamin D deficiency was diagnosed and treated) and I was ignored when I complained of aches and pains. My GP said it was "nothing", I ate a healthy diet and took preventative measures, and yet I still developed this disease. So ever since that horrible time last year when this all started I have made strenuous efforts to be my own advocate and to not take no for an answer from doctors and nurses. I want the very best from the people who are being paid to take care of my health. They may not feel anything for me on a personal level, but I will hold them accountable to do their jobs properly.
thanks for your compassionate reply as always you are such a thoughtful and kind young lady; yes it does hurt that she says that every time we talk, so we don't talk often ... and I have told her it hurts to hear that and that only God knows, so maybe this time she got the message. I am rooting for you, Sophie, I can't imagine having this diagnosis at such a young age. I can't believe they ignored all your symptoms for so long, so callous of that Dr. You are an inspiration to all of us; I pray you are healed from the top of your head to the soles of your feet in Jesus name, amen! xo
Thank you! I think my age was against me when I was diagnosed because I didn't fit the profile of someone who was at high risk of developing breast cancer and of course mammograms are not routinely offered to women in their 30s, so that was another obstacle. I hope things improve with your sister, but if they don't I hope she will treat you with more compassion and care. You need her support, not her criticism and blame.
Soph. I totally get where you are coming from. Mine is a similar story. I believe strongly that I have to watch the medicos every step of the way after being miss diagnosed for 8 months and told to go do some exercise by one doctor. I can’t tell you how hard I had to fight to get a CT scan finally, which found I had MBC all through my spine, skull, ribs, and hips.
Anyway. I find it hard to think about that time, early last year, without getting quite angry even though I did go back to that doctor to ask him, “what would I have had to have done to be taken seriously?” He cried. But I told him “Your tears are too late for me now”
It's hard, isn't it? Knowing that something was wrong, but not being taken seriously. That's why I'm always asking questions and following up.
Speaking of following up, I need to call my oncology nurses to find out about my referral for gene testing. It should have been put through on 11th November, but I have not heard anything back yet. I have a feeling that my oncologist has forgotten. She forgot to put a referral through for a CT scan one time. I only found out because I knew when I should have received an appointment letter and when I didn't hear from the hospital I chased it up and was actually able to make my own appointment directly with the CT department. But there was no apology from my oncologist.
So I can understand your anger at your doctor. His actions impacted on your health.
When I was offered chemo my oncologist explained that if I managed to complete the full treatment it would improve the statistics for not developing secondary cancer by roughly 3-4% for someone of my age and cancer type. 75% chance of return down to 72% chance. I decided to go ahead, it nearly killed me, I was very poorly, and the mbc was found 18months later. I did all that long term damage to my body and I still got mbc. Same as many of us on here. Perhaps you should tell your sister to put that in her pipe and smoke it, followed by if you can't say something supportive and caring don't bother.
I'm so sorry you suffered, Julie! Thank you for your kind words of encouragement and I will use them for ammunition the next time she says that! Love and healing prayed for you, now I finally understand the words, "what doesn't kill you makes you stronger", I pray you are strengthened and healed in Jesus name, amen! <3
That phrase is so true. I am so much stronger now than I was before my diagnosis and appreciate the good things in life in a way I could never have before. Hence my conversation with the woman at the postal votes, she probably thought I was boasting, but I wasn't 😊
You definitely handled it "like a boss" as we say in Texas! So happy that you are feeling better. My main complaint right now is all the crying and emotions from the letrozole i.e. lack of estrogen, and it sure isn't helping my memory any. I only want to live as long as my brain is working! On another note, I find it really awesome that I end up talking with so many brits on here as hubby is from southampton! God bless you and heal us all in Jesus name, amen! <3 xo
small world sometimes! our niece worked at Winchester when she finished school. last time to England was 2003 when his mum passed; now his health is such as I really don't want to be far from the hospital. my miracle man is doing pretty well for someone who has had 4 heart attacks, 2 strokes, abdominal aneurysm and colon cancer and surgery/chemo in 2015. Thank you Jesus! I repeat this often so people, AND ME, realize how much the body can go through and still have a pretty decent quality of life. my biggest concern is being incapacitated, not death. Letrozole is brutal. I'm taking 1/2 tab every Monday, Wednesday and Friday, we shall see. The headaches and wrist pain hopefully will lessen! how much estrogen can a 65 year old woman still have in her body anyway? I went through menopause at 50. At first, both wrists were playing up and I could hardly use my hands, so I went to 2.5 every other day as I need at least one hand; that made the pain in my left wrist go away so hoping even more improvement in my right wrist. some of the studies say 2.5 or .05 showed no major difference in side effects and toxicity ... and that both dosages kept estrogen very low, time will tell. I am a babbling brook today, thanks for listening!
Wow, it is amazing what the body can go through. Your husband sounds amazing.
I'm lucky in a way because I saw my 3 aunts go through breast cancer in 1980s when there was virtually no treatment. they were all active and had full lives until the last couple of weeks. That gives me incredible comfort.
that's good to know, sorry about your aunts. we've never had it in our family. funny thing is, I felt this lump in my breast in 1991 whilst in the shower. Went and had the mammogram and they said I just had lumpy breasts, not to worry. FF to 2013 and that same spot started hurting, aching and growing, turns out it was bc after all! So I had 22 years of ignorant bliss and just goes to show even when you have the tests, if the radiologist fails to order a biopsy upon suspicion, down the road you go without treatment.
I found a lump in 2001 and was told I had lumpy breasts - no other tests than an examination by the gp. In 2015 I noticed a crease, gp said it was age and hormones and I had a history of lumpy breasts.
I knew what it was but was happy to accept her diagnosis that it wasn't sinister 3 times. I also had a routine mammogram as part of a study with younger women.
A friend, who I will be forever grateful to, nagged me into going back to the gp for a 4th time. I saw a different doctor who referred me to the breast consultant. This was a year after I found the crease.
Consultant did an ultrasound and immediately diagnosed cancer. She re-examined my mammogram and said that now she knew where to look it could be seen but because I was young the breast tissue was still dense and it's position had obscured the cancer.
The world of 'what if' is no place to visit if you want to stay sane. We are where we are, it's just a matter of making the best of it. I always think it could be so much worse.
amen! it's just so hard to know what is causing WHAT! the ibrance made me feel great, kind of like you said, like I was feeling good from a few drinks or something ... I knew it was a false feeling and my goodness, I couldn't keep my mouth shut! more than ususal that is and that's saying alot for me! hardly any pains until the chest pains and I attributed them to the ibrance because I had them two nights in a row after taking the pill. now I'm wondering if it wasn't the letrozole causing the chest pains ... I'm so sick of this already, I just don't feel up to any of it and it's only been a year. interesting that we both did the right thing in getting mammograms only to be misdiagnosed. I remember getting a letter from them saying they were concerned about it and was referring it to another radiologist if I remember correctly, then they put their heads together and decided it was nothing and sent another letter giving me the all clear and, like you, I was thrilled to hear the good news. I see the onc next thursday and I'm thinking of asking should I have a mammogram as unaffected breast feeling mighty lumpy these days and I'm concerned, as this has not showed up again in my right breast that originally had the tumor. sheesh!
I can really relate to your experience, because I have had similar. I had my first breast exam at the age of 23 at the American embassy in London as part of my immigration medical. The doctor who examined me said that I had lumpy breasts, but nothing else was done. I don't think I had breast cancer at that time, but the fact I had lumpy breasts always stayed with me, so when I found a lump I just thought it was my natural anatomy. I didn't hesitate to get it checked out though. Then when I was going through the diagnostic stage I was also told I had dense breasts, so that must be quite common in women. It never occurred to me before.
The GP who first saw me said the same as you. The lump I found was actually a spot that went away, but I also had an inverted nipple . She said it was nothing to worry about, and was probably hormonal. She said to return in a month after my next period, which I did, and then that's when I had a mammogram, ultrasound and biopsy, which diagnosed the disease.
I try not to look back at all the mistakes that were made; nor do I beat myself up for not doing more because I did all I could. What really matters is the future, and we have to believe that things will get better. So many strides have already been made in the fight against breast cancer, so let's be the generation of women who see a cure! I'm so glad we can help and support each other on this site!
Ps. The side effects you describe from letrazole are suffered by many ladies. I had similar and oncolist confirmed it was the medication. But for me the worst side effect was depression that wasn't depression. It was like the happy feeling you get after drinking. You know it's false and caused by the drink. I had that but felt really low. I couldn't cope with that but the oncologist told me that depression wasn't unusual with letrazole.
If you haven't already, it might be worth changing brands or the time of day you take the tablet. That's worked for me several times.
I know what you mean Julie, so often you hear you look so good. Did you hear radio 4 Today on BBC this week. There was an interview with a young woman with MBC, on palbociclib etc and talking about these new drugs that target cancer's resistance to treatment, how this is the way forward etc. A doctor from CRI was with her, a lot of research being done there in London. She seemed to have next to no side effects. She said that this was the way forward rather than striving for a cure. Cheers! Fay
There was an article in the Times saying how the drug companies aren’t striving for a cure but finding treatments for advanced cancer to extend and improve our lives
My feet haven't touched the ground over the last couple of weeks with the work that the general election has created, so I haven't seen much in the press.
There is a charity campaign going on at the moment demanding that more work is done on finding a cure for mbc. I think the campaign is misguided, I want access to the exsisting drugs and for new drugs to get approved more quickly by the NHS so my oncologist can prescribe them. I saw an early version of the advert where we were described as 'unsurvivors' which I found highly offensive and I complained. The ad has now been released and that term has been removed though it's still in the strap line. I am not an unsurvivor.
I'm not expecting a cure but if I can access the drugs that will reasonably extend my life and allow me quality of life I'll be very happy with that, and I think that's very possible with current research.
I’m so torn on this. I still look perfectly healthy. Before diagnosis, I lost 30 pounds in four months without trying. People come up and say “you look great”—I sometimes want to say “Yep! the Undiagnosed MBC diet does wonders for your figure!” But bite my tongue.
I guess looking well “for now” affords me a bit of privacy and an illusion of normalcy. I would rather people say i look well than fuss and pry, but that’s me. I would rather not talk about it, even with friends who know. When I do, I am the one who makes light of it all. Not sure if this is healthy, but it’s what feels right at the moment.
I sometimes have that nagging feeling one gets on holiday—you know it’s going to end, but you try not to think about that, yet you can’t avoid it .
Other times I do feel it’s so unfair. We have a good life after several years of difficulties. A daughter in college doing well. A son making his way as an equestrian. My husband had a rough patch career wise that threw the family into a real tailspin (not his fault. Was a total shock) , but after eighteen months of limbo and fear that nothing would pan out , has a great new job. We moved to a new city because of that which has been fun. We rented a pretty house and I am getting involved in social justice work. So all in all I’m as content as I’ve been in years ... for now.... except....
I miss being able to assume I had at least another 30 years to go.!
I sat next to a very spry 95 year old at a dinner party recently. My partner on the other side asked the table whether if they could take a pill and live to be 150 with decent health, would they take it. The younger people said yes, the 95 year old said absolutely no. I found myself thinking “easy for you to say, you made it to 95!”
The vacation analogy is perfect. I feel that constantly.
My partner is a highly accomplished critical care doc. He is very involved in my treatment, thankfully. But, a few months after my diagnosis he asked me if I were going to start driving my restored sportscar. I answered I would if I could manage the top due to my illness. He snapped back (and he never snaps) "You aren't ill!" I felt like I was punched in the gut. He often says this is just a chronic disease and I'll be around for 20 years. All I know to do is smile then go home and cry.
yep, it's one thing to refuse desert BEFORE you've had your dinner; and quite another thing to say, no thank you, I'm so full I couldn't take another bite! ... hope you can follow my intended meaning.
so true, no one wants to show their pain because then we are vulnerable; that's how I feel anyway, I'm very careful who I let come into my inner sanctum. on here, anonymity helps ... wow can't believe I spelled that right the first time and it didn't redline HA HA. Seriously, I try and only express my hurts to my Father in heaven, because I know He will never hurt me, only help me; thank you Jesus!
Totally understand you...but this could also be a good message for you and all of us. We all still have so much to be thankful for, and even more after diagnosis, not to be taken for granted. It's not a contradiction. I have challenges with the few people who know my diagnosis but really don't get the horrendous impact it has had.
It is complementary to you that you can have such a good attitude to the “outside” world, but in reality pain and suffering is also a big part in your life.
I, and I know you, are grateful for a place where we can be real and understood in what our lives with MBC is like. Not just the agony of the physical pain, but the frustration of the “waiting” for results and having to trust that our Drs. are doing their very best for us.
We hurt with one another and have true understanding.
Thank you, I think you said exactly what I was trying to say. In the real world people knowof my diagnosis but I try not to share the bad bits if I can help it. I am absolutely thankful for the life I have but it is so good to have a space where I can share the bits that aren't so pallitable and the support on here is amazing 🙂💕
“Nothing is as it seems” is very true in this case. Did you have to stay up till the wee hours of the morning to count postal votes? I assume you are talking about the UK elections that just took place. Wishing the UK the best of luck as it gets Brexit done!
Not this time 🙂 I usually do the postal votes and then move to the count, but this time, and as I needed to work on Friday, I just did the postal votes and got home at 2:45am which was a lot better than 5:30am when my daughter got back. Felt as though I was skiving!
Yes it was the UK general election. I enjoy doing the counts, it's always good fun.
Yes I think the whole country just wants the situation sorted one way or another 🙂
I was very tempted to 😊 But I let her think that I was just boasting about my marvellous life. I really wasn't boasting, living with this horrid thing makes me appreciate what I have and I don't dwell on what I don't or the things that aren't perfect anymore. 🙂
Best to be looking at how well and good we are going , but I have had a few drooping moments this week. And my family have been gorgeous. It’s good to remember that we haven’t got as long as we thought .... to say and do the things we want to say and do. ☁️☁️🌧🌧
All that matters is that we a really honest with ourselves and those closest to us, I guess.
My daughter has just messaged me to tell me she wants to stay with me to help with the mince tarts tomorrow night, because she had a terrible dream about my cancer last night. It sounds like it must have been a really yucky dream for her.
Well..... if it takes a terrible dream for her to want to spend time with me, I am glad for what real stuff it manifests for us while I’m here. So then when I’m gone she can remember that she had that time with me.
I must start recording little vignettes of time for her. I started, but haven’t kept it up.🤔🤩🤩
Love to all of you here.
This place is amazing for venting, chatting, getting more insights, etc.
I am very appreciative of having all of you in my life. Even if it’s just a flat screen this end, I do think about you all. And being here has brought me a very special friendship.
For me, this disease has given me a far stronger appreciation of the life I have. I was meandering through life under the impression I had forever and always seeing the negative and missing the positive - like most people. I now have a far greater appreciation and far less patience with the mediocre. I'm enjoying life's fireworks instead of complaining about the smoke from the bonfire 😊
My daughter is back living at home and I enjoy her company so much - less so her inability to load the dishwasher or washing machine! 😊
Thinking about your vignettes - I've spent weeks wondering what to get my best friend for Christmas and last week it hit me. We are both keen photographers and I've been nagging her for years about backing up her photographs. For Christmas I've bought her an external hard drive. I've organised all the pictures of hers that she's dumped on my laptop (4000+!) and now I'm copying across all my pictures from our days out together over the last 7 yrs. Just the names of the folders are an amazing record of where we've been and the wonderful experiences we've had. And I'm definitely not planning on going anywhere for a long time but the hard drive is big enough to add the pictures we haven't taken yet. And when I'm not here she will have all the memories of our friendship organised and accessible 😊 Hope this doesn't sound too morbid!
Not going to ignore your question. It excites me that we all connect here from all around the world.
I have on my bucket list..... a white Christmas.
Don’t know if I’ll ever see one. Does this even happen anymore?
But omg! I would love to feel snow under my feet, see white everywhere instead of this disgusting heat we have here. So often very hot on Xmas day here in Melbourne. I hate even putting the oven on. So I tend to do ham, salads, prawns, and stuff like that. But my vegan daughter has to be catered to as well. Avocado and yummy salads, and things like that. But we made two batches of pastry last night. One ordinary, and one vegan. I’ll keep you all posted. Cross fingers they work. But I won’t make them up until the weekend when the weather cools down as there’s a heat wave expected here for the next few days. And my hands are hot enough from the hot flushes I have.
40 degrees Celsius on Friday. 🥴🥺
But Perth, over in the west, (our weather comes from the west and Adelaide has had high 30s and 40s for days now too) has had 40 and over for weeks now. And no rain.
But of course we all know that there is no global warming!*%§#🥺🥺🤔
Anyway.
Taking myself into town today to see a live performance of Chicago. I’ve written a cabaret. It’s nearly finished, and I want to see all the live cabarets and musicals I can. So this is my date with myself.
I can't imagine having a hot Christmas Day! My brother is in New Zealand and has a BBQ! The weather here is grey, foggy, damp and icy, we don't get snow at Christmas very often, usually rain 😊 We've been seeing all the bush fires in Australia on our news, I hope you get some of our rain soon!
I'm cooking an enormous meal on Christmas Day but in the cold it seems easier to eat.
It is great to talk to people all over the world and be able to share a common experience 🙂
I love the response to these posts. I just found this on youtube...youtu.be/QDQ0FjP7J-c. I think it says everything we’ve all been saying and feeling on this post. I’m in my 2nd year and will start my third kind of treatment.... i also went on a plant based diet, no sugar!!!, no gluten (okay, the occasionally bread is ....) and no diary. It has made a huge difference on my body’s ability to manage the meds.... people say to me all the time that I look so good... and you know what I just say thank you and when they say its good to see you... i say it’s good to be seen. I have bad days, but the days i get out.... i feel blessed. Have a beautiful day!
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Mom’s MBC Diagnosis - Ibrance & Low Neutrophils 
On the scrap heap........
