My Mum Has Cancer

[RayKay]

She is done her first chemo treatment!

 

She just called me to let me know it went fine, she is SOOO glad she got the port put in, much better then being stuck with needles all the time, and said everyone was extremely compassionate and kind there....they get lots of business there she said (unfortunately) but because it was her first time she got a window seat!

 

5 more to go...then surgery and rads...but it's a start!

 

She sounds good, drinking lots of fluids, taking her anti-nausea meds, and going to try and walk on the treadmill this afternoon to help the chemo go through her system.

 

I know it's a weird thing to be "celebrating" but as I have alluded to before, it kind of makes it feel more like something is being done to stop those BAD BAD BAD cancer cells finally from growing! And I think we were all nervous in a way for this day, for the "reality" to hit but now that it's started it's almost a relief. It's a START to a long journey we all know, which will be bound to have twists and turns, but we are all hoping the courage and strength are there to confront them all. I am sure not ready to lose her yet, and I know she sure is not ready to go!

 

I don't know, does that make sense, that it feels better once it feels like you are doing something about it?

 

Her hair gets cut short on Friday and died PINK (or maybe purple...), until it is shaved off next week....I am going to see her Sunday and can't wait to see her rebellious new hair do

 

I am also taking her the draft picture I have drawn for her...she told me last week she would like me to draw her a picture of a tattoo to get over her mast scars once she has won this fight (hmmm....she got mad at me when I got MY tattoos!). She is picturing this cancer as a dragon she needs to slay, so I have drawn a picture of this dragon, being wrapped up in a long pink ribbon and being overtaken by it, that loops around it's neck to form the bow and choke it. I still have to do the ink and colour in it, but I think it's fantastic. And even if she does not get it tattoo'd, will be a great pic to frame and have there to remind her what she is doing!

[WildChild]

Yey! Glad to hear it went so well

 

Hey, you should scan your drawing and post it as your sig pic so we can see it!!!

[RayKay]

Yey! Glad to hear it went so well

 

Hey, you should scan your drawing and post it as your sig pic so we can see it!!!

 

I'll have to do that once it's all completed, it's just in pencil right now, but once I have it "finalized" as a draft at least I will do so!

[catgirl82]

raykay,

i just wanted to say that your whole outlook and your mothers outlook is really inspiring. i am a medical student and it really is amazing to know there are patients like your mother and people like you supporting them. makes me more excited than i already am to be a doc

[darkblue]

I was thinking of you.

How are you? And your mum?

[RayKay]

raykay,

i just wanted to say that your whole outlook and your mothers outlook is really inspiring. i am a medical student and it really is amazing to know there are patients like your mother and people like you supporting them. makes me more excited than i already am to be a doc

 

Good luck in your studies, I know a few people whom have studied medicine, and it's a tough road to get there, but is very rewarding!

[RayKay]

I was thinking of you.

How are you? And your mum?

 

I am okay, had a rough night yesterday myself, just worried about her, as the night after chemo was not good for her. She had a terrible headache. I have not talked to her today yet, but today is the day of the big haircut....I'll call her later today and see how she is doing.

 

I am going to go see her Sunday, so looking forward to that.

 

I really need to book an appt myself though with genetic counsellor, since my own brain has got me worried right now!

[darkblue]

The rollercoaster.

You are doing well - and keeping your mother in good spirit.

 

Do you feel that going to a genetic counsellor would help you?

Is it the 'not knowing' the possibilities that is sticking in your mind?

[RayKay]

The rollercoaster.

You are doing well - and keeping your mother in good spirit.

 

Do you feel that going to a genetic counsellor would help you?

Is it the 'not knowing' the possibilities that is sticking in your mind?

 

Yup, it can help me both know a better idea of my risk, as well as help me make some decisions if I came back positive. The chance I would be positive for one of the genes is pretty rare (maybe 1-2% of women carry it), but the high incidence in my family of women getting it pre-menopause is very high, and its why they have told my mother she should get it and also recommended we do. Your chances in life of getting breast cancer are 1 in 8, but that is if you live into your 80's. In my family, the women of at least the past 3 generations have all gotten in in their 40s, where the risk is more like 1 in 252. Enough evidence there is SOMETHING going on. If it seems that the women in EACH generation are diagnosed before 50/menopause, that puts you automatically in a higher risk category. My own risk now that my mother was diagnosed is now 2-3 times higher then average population.

 

I would rather know NOW too, because while I might have the gene, and not get it for years, there is also a chance I could get it much earlier too. I also want to talk to them about getting an MRI or ultrasound now. Mammo's are not as accurate in younger women as their breasts are more dense, however I do want to be checked out now. I was told before any time the doc does an exam, that I have "granular breasts", and they told me to "cut the caffeine" which I rarely had anyway. I am now somewhat concerned that caffeine may not be to blame. It is possible I have fibrodemia, etc, but it is also very possible that there are signs there of early DCIS, etc that was kinda ignored due to my age. So I would just like to get it checked out to verify one way or the other. The fact that I have been on birth control pill last 10 years is not making me feel better either. Most breast cancers when finally detected are 8-12 years old! By that time they are often affecting other tissues too. They chances are greater that they NOT find anything, but they MIGHT, and I would rather be safe then sorry.

 

Here, they don't start regularly checking until you are 40, but I would PREFER to be getting more regular ultrasounds or MRI's IF possible before that (at least starting at 30) given the high incidence in my history.

[darkblue]

As long as it will help you in some way. Either puting your mind to rest, or preparing you for possibilities; and allowing you to make informed choices based on the facts.

 

How was your mum looking/feeling yesterday?

I remember you said you were visiting her on Sunday.

[RayKay]

She's TIRED...very very tired. Feeling nauseous and can't really eat anything either...the smell of a lot of things that normally would not bother her (like coffee, etc) can make her feel really ill. Too bad as J and I made buttertarts on Saturday and brought them over...don't think she can eat them, but at least she does not have to do any Christmas baking now.

 

She's okay though, given that each medecine they give her right now for chemo (3 of them) has about 3 pages of side effects each, doing okay! First week after a treatment is usually worst.

 

She cut her hair, but her hairdresser did not want to cut it very short (he was in denial!) so she may ask my uncle to come do it this week (he regularly shaves his head) and has ordered a couple wigs..

 

I got some more details on my history too...my grandmother was officially diagnosed when she was about 52ish, though had found a lump when she was still in her 40s but like my mom's case, it went "missed" by a lot of medical professionals.

 

My great grandmother (my mom's paternal grandmother) the details are a bit sketchy still, she died though when my mom was a little girl herself, which would of put her in her 40's or early 50's I believe. My other great grandmother (my mom's paternal grandfather) died in her 60s of cancer...but they had opened her up in the OR to find her body riddled with cancer with no idea where it started. Looks like it had been there many years, but she was terrified of doctors and would never go, so whom knows. Likely started as BC though, usual culprit for women. Anyway. since it seems there is a high incidence of women in my family getting it before menopause basically genetic testing is highly recommended for me anyway. I think it would do more good to get it done then harm in any case, getting the test itself does not change my risk, it just lets me know my risk. I already know my risk is extremely high, but it's something that I should know for future children and such as well, and allow me to get the best care I can if I am indeed positive for a gene. I don't think it is VERY likely I am, those whom carry gene often get cancer in their 20s, 30s, but there is a chance.

[darkblue]

She seems like quite the character.

It's unfortunate that the drugs make her sick and tired - but if they can help, they must be worth it.

 

The genetic cousellor sounds like a good idea.

I know that I would like a professional opinion, and to know my risk - if I were in your shoes.

[RayKay]

She seems like quite the character.

It's unfortunate that the drugs make her sick and tired - but if they can help, they must be worth it.

 

The genetic cousellor sounds like a good idea.

I know that I would like a professional opinion, and to know my risk - if I were in your shoes.

 

All her oncologists, and nurses at the chemo centre, have said that the course she is on WILL shrink the tumour. By how much varies, but it DOES shrink it in 98% of the cases, so it will work on that front. We just have to be hopefull it also prevents the cells from taking root anywhere else, and that surgery will remove the rest as much as possible

[DN]

Well, if positive thinking helps, and I am sure that it does, then she and you will surely have an effect.

 

How is your step-dad now? He may need a little help himself in expressing how he feels so he can support her as well. It sounded from a previous post as if he is having a hard time with it.

[RayKay]

Well, if positive thinking helps, and I am sure that it does, then she and you will surely have an effect.

 

How is your step-dad now? He may need a little help himself in expressing how he feels so he can support her as well. It sounded from a previous post as if he is having a hard time with it.

 

I think he still has a hard time, I think he also has a hard time understanding some things.

 

My mum sometimes will get kinda down about it, which is completely normal. She is allowed to have those moments too! And my stepfather will not understand why, and tell her to be positive...which she is, but it's still in my mind normal to feel worried and stressed too about it, and kinda down. My mum is a very active woman, and it is hard for her to not be able to do anything - I would feel the same way! It's still recent, and still something she is dealing with and in a sense, grieving over.

 

He also does not understand why she is worried about her hair coming out. Granted it is "just hair" but for many people, and many women, hair is part of whom they are...it may be superficial, but hair is one of those things that is just part of them. For me, people RECOGNIZE me by my red hair, so I can see how hard it is initially when it comes out. And my mum likes her hair, it's one of those things she always took pride in doing nicely, and she always had nice hair. I don't think it will be as bad once it IS gone and there is little you can do, but that shock of it coming out is hard, and is why my mum wanted to prepare herself for it (shave it/shorten it) so it was not in big clumps basically.

 

I think part of it is denial, and just no experience directly himself. He IS however being supportive and doing things for her like running her baths, and cooking what little she can eat, etc. He is reading, and learning, and taking care of her how he knows how too. He'll be okay, like us kids, it's hard to be going through this and not being able to really DO anything.

[DN]

Not being able to do anything is the hard part - I feel the same about my sister. But being supportive is doing something. Imagine how she would feel if she were on her own without knowing that the people who love her the best are there for her.

 

Sounds like your step-dad is doing his best within his power and capabilities. When you see them next, maybe try to have a private word with him and let him know he has your support as well. And then 'coach' him a little, tactfully of course, on the finer points of what support and understanding she needs as a woman.

 

My brother-in-law spent some time on the phone when he called to tell me the results of my sister's operation and I found myself building him up as well and offering him support for his situation. He is worried for her but he must also worry for himself, he would be lost without her.

 

Something like this is not just about the person who is ill - everyone in the family needs support. That may also be true for your boyfriend who is also affected because it is affecting the woman he loves - you.

[RayKay]

I think it would be better for my sister to do that honestly, my stepfather and I are not terribly close, and don't have that rapport. I think she already has though talked to him. They are very close.

 

As I said, he is not being "untactful", he is very much there for her, he just does not really "get it". Though if he was one sick he would be grumbling to no end!

 

It's hard for my boyfriend, I know, but we talk about it. He just sees how much it stressed and worries me, and I have had some awful days too! He also knows it's something on my mind for future..I can't help but watch her and think "that will be ME one day too"....he's great though

[ninjagirl]

Stay positive, RayKay!

 

My friend's dad just survived Stage IV skin cancer. They ended up having to surgically remove lymph nodes...twice. He didn't think he would survive the first round. Keep friends and relatives nearby, keep her fighting spirit up, and stay positive! Even in the darkest hours, there can still be hope.

[RayKay]

Thanks again all & ninjagirl, just wanted to give a small update for myself.

 

I booked an appointment today with the Nurse Educator/Practioner at the local Breast Cancer Centre for Hope, for a week from today. It's the first step for the genetic testing. I have already told them I am interested in it, and some basics on my family risk, and that I am definitely wanting to discuss options for NOW. I think I will be pretty insistent on wanting a baseline mammo, MRI or ultrasound at this point, as I would like to begin regular testing earlier then 40 most definitely. There is a lot of questions around some of my ancestor's dx's, but it is apparent some had something much earlier that went untreated and they died from it.

 

I tell you, it's a hassle trying to find out whom to talk to, where to go in this area. I finally figured out to get the counselling/testing, I needed a referral from a physician, but while my OB/GYN is great when it comes to other areas (I had precancer on my cervix for a long time) when it comes to my breasts, she has seemed rather unhelpful in the past. Given my high history has brushed some concerns off. Though I will have to talk to her about my pill when I go in in a couple months, it might not be best thing anymore to be on. So anyway, contacted this centre that is a support and referral service for patients and family and so I will talk to them next week about getting in for further testing and options.

 

Talking to my mom more this weekend, I found out my grandmother was dx'd in about 1982, and died about 4 or 5 years later from what I recall. She was early 50's at offical dx, but from what I recall she found a lump years prior but was dismissed. When they dx's it, it had spread.

 

My great grandmother the details are also sketchy, but she died when my mom was a very little girl of BC, so she would of been pretty young as well since my grandma had my mom quite young.

 

My other great grandmother (still maternal) died in her 60s...so post menopause, but she died on the OR table. They had opened her up and found according to my mom, her body to be "riddled" with cancer, with suspected start as BC. She was notoriously afraid of doctors, so no one knows how long she had it, or when she found something. I suspect for a while however.

 

The details on my paternal side I am unsure of, as I am not close to them and have little contact with them. I have no maternal or paternal aunts either, and though there are cases of skin cancer, lung cancer, colon cancer and suspected bladder cancer in many of my uncles and other relatives at "relatively" younger ages (ie 40-60) and one of my cousins (or second cousins) had prostrate cancer, no other known cases of bc.

 

I am however hoping I am recommended for genetic testing, and given some "monitoring options" even if I am not positive for known gene, given the high risk. I have to be my own advocate I suppose in this case. I would rather know something at a younger age, or when it's early, and have a bit of time to make some decisions, then wait until too late. My mom's was so aggressive she had no time, it really "grew" within year since last mammo. I see her going through what she is, and read all of your stories, and feel for all of you...and also for me and my sister whom may very well inherit this legacy.

 

Honestly, I don't THINK I have a gene. While many of the women in my family have been younger then 50 when bc was suspected or dx'd, I am not sure of any YOUNGER cases then that, and not aware of any men either with it or whom have had it. But, it does not hurt to find out either way, talk to someone, and let them know I want to develop a plan to start monitoring earlier rather than later! I have read of many cases where "microcalcifications" or DCIS was found years earlier and "ignored" or not biopsied only to turn invasive. Armed with the knowledge I have now, I would like to be tested, know my odds, know what is there, and make some decisions based on results.

[octopus]

RayKay,

 

I am very sorry to hear the news. But I want to tell you there's a lot of hope.

5 years ago my mom was diagnosed with stage 3 breast cancer as well. It was so bad that 2 days after the diagnosis she had mastectomy. Then chemo and radiation threapy for 9 months. The threapy, as they generally say, is worse than the disease but they've got such good drugs now that it really works, if one doesn't work, they've got many more to try if the body will respond.

 

After 9 months, all her tumors were dead. She was ok for another 6-7 months, off chemo. Her hair grew back, her mood was better, she even came to the US to visit me. Just after that, we found out tumors had grown back in her liver this time.

 

Chemo started, and this time since her body was weaker than before, it was worse. She was miserable, her nails were falling out, she coudln't walk etc. Just 2 months ago, she had a PET scan and they found out her tumors in her liver were finally dead. So she had ablation = they burned the dead tumors with radiofrequency waves. She's off chemo, and recovering.

 

All this does not even come close to the pain she has (and we have) all been going through for the past years, but I just want to tell you that breast cancer is a good kind of cancer to have, because chances of recovery, or keeping things under control with chemo are high.

 

There are things you need to do. She needs to be in a good mood. As hard as it is, her own feelings are most important. She might think of it as a chronic disease that she'll have to live with forever, because it is very possible that she'll be on chemo for the rest of her life. Now that can be a good or a bad thing, depending on how her body responds. She needs to eat well, because cancer cells ( i was told) tend to like to consume junk nutrients.

 

I just want you to force yourself to be hopeful and remember that there are many options for breast cancer. Mastectomy is not the end of the world. She will be fine. It will be hard times, but stand by her. Don't let anybody bring her mood down.

 

Good luck and may God help you. The day I learned my mom's cancer cells were dead and she practically didn't have cancer in her liver anymore was the day my boyfriend told me he didn't love me as much as his ex. I didn't know what to think. Life never seems to give you everything good all at once. I'd much prefer my mom healthy than my bf though.

 

Good luck to you and feel free to send me private messages if you want to learn anything more.

[RayKay]

Thanks SO much octopus for your post!

 

Given our family history, it was very difficult initially to be positive, however we are definitely getting there! I talk to my everyday, by phone or email, and visit her when I can, and she is doing wonderful. She is positive, but also knows her limits right now. The chemo she is on (FEC) is really hard on your body...she is very wiped out!

 

I don't think she worries too much about the mast. In fact, she wanted it almost right away, but her doctors told her to wait until after chemo...she watched my grandma get it, and it was the discomfort that was worse. She knows she is beautiful beyond her breasts

 

I am SOOO glad your mom appears to be in remission, I certainly do believe from experience things like this are in a way their own blessing. It is terrible on a family, but it also strengthens a family. I witnessed it with my grandmother, my boyfriend whom died a few years ago, and now with my own mother. While breast cancer in our family is a haunting inheritance it seems, it also brings with it amazing strength, courage and love.

 

I have never been religious, but I certainly am very spiritual since my late bfs death, and I am touched even more by that strength of spirit then ever...that spirit of kindness, hope and love that embraces all who reach out to it.

 

I look forward to this Christmas, it will be unlike any other, hard, but also very memorable for us all I believe as we learn to know one another in a new way.

 

I know it's an odd way of thinking, but while I have had some tough times in my life, as has my family, I truly believe in spite of it and because of it, I am tremendously blessed to have had those experiences.

 

Thank you for your kind words, best of luck to your mom and your family.

 

RayKay

[kellbell]

Hi Rachael!

 

Just checking in to see how you are holding up and how you mom is doing. It's great to see you are positive and keeping an upbeat attitude. Your strength is amazing and so is you mom's. Just letting you know you and your family are still in my thoughts and prayers.

[RayKay]

Hi Rachael!

 

Just checking in to see how you are holding up and how you mom is doing. It's great to see you are positive and keeping an upbeat attitude. Your strength is amazing and so is you mom's. Just letting you know you and your family are still in my thoughts and prayers.

 

Thanks Kelly, it is great to know that you are still thinking of us all!

 

I appreciate it very much, keep those prayers coming!

 

RayKay

[redandblack]

RayKay--

 

I really admire your strength through all of this. I have found out recently that my father (who I am not close to by any means) may have colon cancer. It runs through our family.

 

I can really relate to how you are feeling and you seem to be handling this VERY well. I'm sure your mom is very happy to have you around. I'm positive your strength through this helps your mom in ways you don't even realize.

 

I wish you the best in everything that is to come. You are doing a good job staying positive and that seems to be a very powerful tool in these types of things.

 

Take care

[RayKay]

RayKay--

 

I really admire your strength through all of this. I have found out recently that my father (who I am not close to by any means) may have colon cancer. It runs through our family.

 

I can really relate to how you are feeling and you seem to be handling this VERY well. I'm sure your mom is very happy to have you around. I'm positive your strength through this helps your mom in ways you don't even realize.

 

I wish you the best in everything that is to come. You are doing a good job staying positive and that seems to be a very powerful tool in these types of things.

 

Take care

 

Sorry to hear about your dad...close or not, it does not make it easier. It's odd as I always thought MY own dad whom I am not close to at all either would be first to get very ill (he is a smoker/tobacco chewer, and has had a rougher life), as opposed to my very healthy, active, mother!

 

I had a relative whom also battled colon cancer. I know another getting tested for that and bladder cancer too. Knowing the risk you have, take very good care of your health! I read some recent studies that keeping a healthy weight, exercise and eating a lower fat diet are all preventative measures against colon cancer. Medicine is pretty amazing these days too.

 

There are bad days, and good days. There are days I lay awake thinking. Last night was one, I had to get up early to run, but I could not fall asleep as I was wondering about my own breasts too, and what would happen next week when I went to the clinic for referrals and so forth. Things like early cancer can be found much more often now due to better diagnostic techniques, so it just had me wondering what I would do if they found something! I know I am getting ahead of myself, but unfortunately sometimes your brain cannot help it.

 

There are days I worry about my mum, a lot. With Christmas coming, it's going to be very different then usual in many ways, and you can't help but wonder how many more Christmas's we will have...even when being positive, you just cannot help it all the time!

 

Thank you very much more for your comments, and I wish you the best of luck with your dad, take care of yourself.

 

RayKay