nedd to talk

Dear Nattie & Lee

From all the responses so far from all these wonderful women, you've probably guessed that any side-effects really can be so different for each woman.

I had AC chemo (sorry, I cant spell or even pronounce it now! 6yrs ago seems a lifetime away sometimes).

Because I lived in a remote area and had to do a lot of travelling, I felt it best to leave work until I felt I could handle it. I also wanted to give my body all the strenght it needed to cope.  Some women find strength in their work, their family etc, or like me, I found it at home in the quiet.

I don't want to scare you, but these were some of my side effects (and you may not experince any or only some):

could not eat pepper or spicy foods (which I love) as it felt like fire in my mouth

I could not drink alcohol as it tasted like metal (I did experiment tho and found a couple that were nice!)

I kept cut up watermelon, rockmelon handy to eat as it was easy and cool.

to flush the chemo, I drank the required amount water, but as im no fan of water, I drank it with cordial.

If I felt the tiniest bit of nausea, I would pop the pill for it straight away and rest.

My memory and attention span were very short at times, and even non-existent on some occaisions.

If I ever had a question, I wrote it down in my 'questions to ask pad' (any pad will do, just so long as you remember which one!) and stored it with my 'My Journey Kit' Diary which never left my side. So at the docs, I would hand over my list and they would supply the answers. If they couldn't I asked them to find someone who could.  As mentioned before, having someone else with you at your appointments can be a great help. The job of my 2nd pair of ears was to take in the info, ask questions (especially if I had forgotten any) and to go through with me later the appointment. Often I realised that there was some info i hadn't taken in.

This is normal. We're in shock and our body & minds will only process so much during this time.

oh yeah, my hair fell out! Some said it would take 21 days, some said less etc, it took 14days for me.  Before It started to drop, I had my hair cut short. And then when I felt the time was right, I had my partner shave it off. I celebrated with a sigh, and tossed my locks for the birds to use in their nests.

Hope I haven't overwhelmed you.

Love always,Emmaxo

Hi Leanne, I have had surgery, chemo and radiotherapy and it's incredible just how different people respond to all three. Some very fortunate people breeze through chemo, with little side effects and wonder what all the fuss it about. You may well be one of these people. On the otherhand, some people suffer terribly with a huge range of side effects that disrupt their entire lives. I did have some side effects and think I fell somewhere inbetween. I think it depends on what type of chemo you are having (some are more heavy-going than others), your general overall health before chemo, your age etc.. I was 40 yrs of age when I was diagnosed in 2008 and otherwise very fit and healthy. Because of the nature of my BC, the fact that I was very healthy otherwise, and I was only 40yrs old, I was guaranteed that I would receive "the works" to give me the best possible outcome. The assumption was (I think) that I could handle "the works" which I did and quite well really.

Yes its really scary going into chemo...terrifying infact.  It's hard to know what to expect because of all the horror stories out there (people are always so keen to share with you their horror stories!) and how or if it will disrupt your life. I decided to go into it with a very open mind....I'd heard mostly all the negatives about chemo....but was determined to view it as a good and necessary thing that would benefit not only me but my daughter too (I'm a sole parent). I also had no idea how I was going to react to the chemo, and to be honest, neither did any of the nurse and doctors for that matter. Every patient is different. I didn't work though, but I know many women do work through their chemo...in fact I even met one who had chemo in her lunch break from work! I guess it really depends on the side effects that you get from the chemo, and whether you can and want to tolerate them while at work. If you can, and want to Leanne, then GO FOR IT, especially if you love your job!!

Also, from my experience, it's great to write down any questions for your medical team, and keep asking until you get an answer! Don't stop asking! Breast care nurses are wonderful resources too, and often explain things in everyday language which is easier to understand!

Good luck with the oncologist next week Leanne. I find it's great to have a second pair of ears with me at all my oncologist appointments...someone who hears the same information as me, and someone who can make sure I get the information I need from the appointment.

Celeste x

My boys are 4 and 10, 10 year old has been good, old enough to read a little bit about it and knows that I had hodgkins just before he was born and had done chemo back then (but it has changed so much since then and I was a teenager living with mum and dad.)

My darling 4 year old, looked at my top the day after surgery, then lifted it, and told me - "hey mummy they took your boobie, does that make you a boy now like me!"  He seems to be taking it all as normal.

Kids are a blessing, and make you feel like your normal and nothing is wrong

Hi Lee, I'm so pleased you have joined with us in this thread.  There are so many people who are in the same situation as you and Natalie.  After you receive your diagnosis and have faced the surgeon, life seems so full of uncertanties.  That's wher this site can help because there will be someone to help with advice and just to chat.

You mentioned that the nurses weren't able to answer your questions.  Did you receive your "My Journey" kit at all?  If not you can order one on site - they are free and contain a wealth of knowledge that will help you.  There is also a dvd that you can watch with your husband/partner (it covers the situations and questions that they need to understand).

What ages are your children?  Give them as much information as you think they can absorb - keep it simple if they are littlies ... mummy had a lump in her breast which was making her sick so the doctor operated on it.... that's all they need to know at this stage.  If they ar older, give them more information (boys and girls alike) and try to answer their questions as they ask them.  Try not to fob them off with "you're too young to understand". When your wound has healed, and if they ask to see it then let them.

I must say that this is my own opinion, others may not agree.  I was showing my daughter and grand daughter my healed scar when I was visiting and my three year old great granddaughter wanted to know what we were looking at.  Her mum said it was ok, so I showed her and told her much the same as what I said before .... she promptly stroked it and kissed it better - she wasn't frightened at all. (naturally we three grownups had a cry, but she was fine)

I can't advise you re the chemo and work as I was fortunate in not needing it as my cancer was contained in the one breast and hadn't travelled anywhere else in my body.  I believe that chemo and radiology affects people in different ways.  There are others on line who will be able to share their experiences with you.

Both of you take care of yourselves .... let us know how you are getting on with your treatment etc

Cheers .... Shirl xx 

Hi Natalie,

I can offer no experience and no assistance, but wanted to let you know that I cried while reading your message.  I am in a similar boat...  But I loved reading your message, everything I have been thinking and feeling but afraid to say was put on the screan by someone else.

I have only just had the mastectomy, and meet with oncologist next week.  I have so may many questions and no answers.

Would love to chat to someone else who is going to the same frustrations of not knowing, becauses the nurses have not helped

I have 2 young children, and love my full time job, I healed from the surgery enough to be able to return gently to work after a week, but everyone keeps saying that I wont be able to work while I chemo, I still dont understand the side effects, why cant I work why do you have to take leave for it?  Sorry for the rant.

If only everyone with BC had the same sort, required the same treatments, then they could write a guidebook to tell us the answers that we are so worried about. 

Leanne

Hi Natalie,

I can offer no experience and no assistance, but wanted to let you know that I cried while reading your message.  I am in a similar boat...  But I loved reading your message, everything I have been thinking and feeling but afraid to say was put on the screan by someone else.

I have only just had the mastectomy, and meet with oncologist next week.  I have so may many questions and no answers.

Would love to chat to someone else who is going to the same frustrations of not knowing, becauses the nurses have not helped

I have 2 young children, and love my full time job, I healed from the surgery enough to be able to return gently to work after a week, but everyone keeps saying that I wont be able to work while I chemo, I still dont understand the side effects, why cant I work why do you have to take leave for it?  Sorry for the rant.

If only everyone with BC had the same sort, required the same treatments, then they could write a guidebook to tell us the answers that we are so worried about. 

Leanne

Hi Celeste, thanks for joing in here.  I knew there would be some-one along soon who could help Natalie out with some first-hand info.

That's what this site is all about .... help and support

Cheers .. Shirl xx

Hello Natalie, I was diagnosed with grade 3 breast cancer and finished chemo and radiotherapy last year. There's so much information to absorb and sometimes its difficult to retain and make sense of it all, so I understand what you are going through! When you go for your first chemo session, the nurses should sit you down and go through what to expect, how long you will need chemo for etc. You could also write down a list of questions to ask your Oncologist regarding chemo too. As far as time off work goes, I expected to be back at work reasonably quickly, but it didnt work out that way. I started by applying for leave a few weeks at a time but then decided to go on extended leave to fully recover before I went back to work. I certainly didnt rush things....I had about 18 months off work! Everyone is different though, and you may want to (or need to) return much earlier than that! I think employers are usually very good about absence due to cancer though. Will be thinkking of you, Celeste

Hello Natalie, I was diagnosed with grade 3 breast cancer and finished chemo and radiotherapy last year. There's so much information to absorb and sometimes its difficult to retain and make sense of it all, so I understand what you are going through! When you go for your first chemo session, the nurses should sit you down and go through what to expect, how long you will need chemo for etc. You could also write down a list of questions to ask your Oncologist regarding chemo too. As far as time off work goes, I expected to be back at work reasonably quickly, but it didnt work out that way. I started by applying for leave a few weeks at a time but then decided to go on extended leave to fully recover before I went back to work. I certainly didnt rush things....I had about 18 months off work! Everyone is different though, and you may want to (or need to) return much earlier than that! I think employers are usually very good about absence due to cancer though. Will be thinkking of you, Celeste

Hello and you have made the first step to helping yourself and your family, remember you are never alone and pop in for a chat any time. I understand how upside down your world is right now but Shirl has put you on the right path. One day at a time. You can order the "hopes and Hurdles" info pack yourself on this sight and I'm sure when your husband checks out the dvd it will help. There's also a great flyer for how friends and family can help.I hope there is a local support group in your area as we all draw from each others strengths at this confusing time. I have had a RH mastectomy, radiation and chemo. I was very "lucky" and was never sick just tired from the chemo so remember your state of mind is a powerful friend at this time. i kept telling myself i didnt have time to be sick as I had 2 kids (10 & 12yrs) and a husband that worked away so my kids kept me going and gave me strength. Your hubby sounds like he is overloading on the info a bit, we all have done that, it doesnt make it wrong, just shows how much he cares and our men feel so useless that there's nothing they can do to help. No doubt his work mates are trying to help and comfort but sometimes you have to say -stop.  Too much info just confuses, put it aside and talk to each other, breath, hug and be there for each other and when you BCNA info comes through, put the kids to bed early (if there young??)go through it together, calmly, maybe with a bottle of wine, thats what my hubby and I did and although it's a terrible time and subject it was a wonderful night ending with us having a one step at a time plan and knowing we we're there for each other all the way.  Hope this helps and be thinking of you,  Kaz