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Hi Everyone - Newly diagnosed breast cancer

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by BonnieC on Dec 7, 2019 2:26 pm

Essjay‍ 
thanks for the great info. It sounds like you didn’t work during radiation. I have tentatively planned to continue working.l during my radiation treatments. My surgeon said that it’s up to me but some women do.   Am I being realistic?  I’m a supervisor and I can do some work from home. Unfortunately- We don’t have any benefits/short term leaves at my work as we are a small non-profit. But I can apply for a sick leave through EI and receive partial pay.  If I need chemo I was planning to use that but wasn’t sure about radiation.  I do get 5 weeks vacation and I have some sick time so I was going to try and manage working with some time off. 
Your other suggestions are all good about cleaning, cooking etc however my children are 22&24 so they can look after me!! ;) I was researching ointments and cream for possible radiation burns. So far I have heard fresh aloe and eucerin or glaxo cream and to start before radiation even starts. Any other suggestions to prepare?? 

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Essjay on Dec 7, 2019 3:46 pm

BonnieC‍ I took sick leave through chemo - I had dose dense ACT regime and there is no way I could have worked. I started back during radiation 3 mornings a week, and started building up gradually once I finished radiation. I was back to full time work 12 weeks after finishing radiation. I was lucky to have a generous sick leave plan (6 months) and then long term disability was granted to allow me a gradual return. My secret to making that work was exercise daily, pacing myself, having very specific tasks to do when I was at work, and getting plenty of rest and good diet.

I too am a supervisor, I'm an executive in our department. I do strategic planning, budget management, contracts, HR stuff, partnership building, communications, project management etc. I found my concentration when I came back to be truly awful, and I was afraid of making mistakes. I struggled to remember names, and my own notes seemed alien to me and I had no recall of meetings is been present at. This was the fatigue from both chemo and radiation. Now 6 months after completing treatment I was just thinking this week that I finally feel like I am back on form. I still get walloped by fatigue from time to time and still have to pace myself. I am currently working 1 day a week at work which means I don't have to drive that day and can focus on things that I get distracted over at the office - I also use that day for a long run at lunchtime, which I'm really enjoying.

Lotion-wise I used an aqueous cream by CeraVe, I bought so much, I'm still using it. Use liberally before and after treatment... Your clinic will give you some option and just see what is available. For radiation, you need to have good range of motion, so if this needs some work or the scar is rather tight, now is the time to focus on those stretches and some self-massage. I found radiation made everything tighten up again, and the scar tissue got firmer (I'm still working on it), and I've recently developed web auxiliary syndrome down across my ribs (I'm stretching and massaging to break that down). I didn't suffer too much burning or soreness with radiation. I’m small, and I've heard that's a benefit (there have to be some eh)...

 

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by mc2 on Dec 7, 2019 7:44 pm

BonnieC‍ I worked before my surgery and decided not to work for radiation (20 doses, my last one will be on Monday).  It made it easier to juggle with my daughter starting school but, in hindsight, I probably could have worked a few hours a day with flexible arrangements. I think it is definitely realistic/possible. One thing that I was not expecting though was how variable appointments could be.  Most of them have been super fast (20-30 minutes in and out of the hospital; about 2-3 min on the machine for treatment).  But some days it has taken 1-2 hours 'cuz the machine broke or the new patients were taking more time, there was even a fire alarm (did not need to evacuate) one day.  And some days treatment time changed too and I was told the day before. All that to say, I think it is feasible to work as long as there is flexibility with your work. I have been more tired in the last week so I need to squeeze in a nap to keep going. That may have been a little weird to do at work. ;)

And as far as cream and skin goes, i haven't needed it. No rash yet.  Radio-oncologist said my skin is taking it well because it is high in melatonin.  Of course it may redden in the next week... we'll see!

 

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Charper on Dec 7, 2019 7:52 pm

Good evening BonnieCEssjayKims1961ashconRunner Girlmc2‍ I hope everyone is doing good. I had a pretty good day today, did alittle Christmas shopping. I spoke with my Dr yesterday about my period lasting so long and she said it is probably because I hadn't had my period for so long, not to worry.  My suregon did say I would have to do radiation but wouldn't that be a for sure after the pathology? I am confused, but I shouldn't worry until it happens Right?  One day at a time...keep pushing forward...sending big hugs to you all.

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Essjay on Dec 7, 2019 8:49 pm

Charper‍ if you are having a lumpectomy they recommend radiation to give as good a chance as mastectomy of having got all the tumour out...
I really didn't find it that bad. The daily appointments were a pain but I wasn't at the hospital long and they had a pretty efficient system. I have a couple of tiny tattoos and a brown breast to remember that time...😉

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Runner Girl on Dec 8, 2019 9:16 am

Hi Charper‍, 

I glad you spoke with your doctor and that you're getting out and doing the "normal" life stuff like Christmas shopping.  A little distraction from all of this is a good thing.  

When I met with my surgeon I was advised that I'd be having radiation regardless of my surgical choice, either lumpectomy or mastectomy.   I chose lumpectomy as it was less invasive.  Like Essjay‍ , I didn't find radiation to be that bad and I too am left with a brown breast and 4 little tattoo dots that allowed me to become one with the radiation machine.  I was able to schedule my radiation appointments early in the morning and went to work afterward.

Runner Girl

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Charper on Dec 8, 2019 11:47 am

Hi all, BonnieCEssjayRunner Girlashconmc2‍ I have been struggling with something, it is kinda a long story...about 12 years ago my sister (she is the one that passed away) and I had a falling out and in turn we did not speak for over nine years and my other two sisters did not speak to me either. Then she was diagnosed and they decided that I should come a see her. She and I patched things up while she was going through treatment and then she passed and then my mom passed a year later. Last Christmas was the first time we were together.  Only my two sisters know about my diagnosis and they are I guess supportive in there own way, I really do not feel very close to them. Anyways they are planning Christmas eve, and I really do not want to go but I am not sure how to go about this, I am not sure if I want the rest of the family to know, cousins nieces and husbands to know...i am at a loss?

I also help a guy out once a week with his payroll and paperwork, I have known him for years and I am not sure if I want to tell him? I just do not want to have a melt down.

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Essjay on Dec 8, 2019 12:11 pm

Charper‍ , as I recall you are having surgery on December 20th, so December 24th is early in your recovery for a family gathering. I didn't shake off the effects of the anaesthetic for about 7 days, although I had to deal with an allergy to codeine that I was unaware of before which likely affected my recovery. You will be sore, and stiff. You won't be able to lift things, you may not feel up to driving for a little while. You won't want hugs or boisterous small children climbing on you. But you may feel going and seeing everyone for a short time works for you, or you can make it work.  

What you tell them is up to you, if your sisters know, and they may say something. Personally I'd rather people hear from me. I was very open about what was going on. I spoke and messaged with my immediate family, aunts, uncle, cousins in-laws and close friends, and then I shared status reports through different stages of treatment on social media. People wanted to know how I was doing, and they tell me they found my posts demystified cancer treatment a little bit ( a friend who went through breast cancer told me after seeing my posts she regretted not being more open, although she was a great help to me privately). In a similar way, my sister who lives with MS posts a picture of her dog on their morning walk every day to say ’I'm ok folks’...

If people know something of what is going on, then they can make allowances when you are having a bad day with anxiety or pain. They don't have to know all the details. 

Take it easy 💕 Essjay
 

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by BonnieC on Dec 8, 2019 12:18 pm

Hi Charper‍ 
My motto so far is ... I tell who I want to tell.  People will find out what’s going on with me from other people but I am in control of the people that I wish to share this with directly.  It’s been very empowering for me to know that it’s up to me.
As for your family event ... again I say that’s totally up to you.  I would say that if your sisters know your situation - then they would understand if you chose not to go.  If I’m not mistaken that’s pretty close to your surgery date and at that point of your recovery.  You might not be up to a lot of visiting yet outside your home.  I was still  in pj mode on day 4. 
But again my advice - do what YOU want to.  Be a little selfish and put yourself first. 

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by ashcon on Dec 8, 2019 3:33 pm

Hi Charper
Cancer is hard enough to deal with and one shouldn't have to manage strained family relationships or uncomfortable moments on top of it too! 

I would totally agree with the wisdom from BonnieC‍ and Essjay‍ ,including the bit about you still being in recovery mode after your surgery. No, you should not be out in such a social setting so soon. You will be very weary, possibly in a fair amount of pain, and (let's not forget) you should not be exposing yourself to potential germs and infections. It's not worth the risk. 

So, is it a situation where if you don't go, people will ask why you're not there, and then your sisters will have to explain why? And then that leaves people feeling unsure about whether or not they should reach out to you, because they didn't hear it directly from you.
I agree that eventually these people will find out. Maybe you can hide it from the guy you help out with paperwork and payroll for a little while...  

It comes down to asking yourself why you do not want people to know? 
For me, I felt like I did not want to deal with their responses. Or what I called their "puppy dog eyes" when told the news.  When I did start to tell people, there were some insensitive responses, but the majority of the people were overwhelmingly supportive and caring beyond my wildest dreams. 

This article on how to tell someone you have cancer may offer some helpful tips that may work for you. https://www.cancerhealth.com/article/tell-someone-cancer

One person who wasn't nice was my twin sister. I learned that she actually told our mother, our other sister, and other people, that she thought I was lying about my cancer. 
Needles to say, she and I don't speak anymore. 
So, I get it about the strain of bad sibling relationships.  Having cancer can, but usually does not, repair previously damaged relationships. And right now, you need to focus on you. 

If you don't go to this Christmas gathering, do you have alternate people you can be with? 

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Runner Girl on Dec 8, 2019 6:58 pm

Hi Charper‍ ,

Some great responses already.  I'd like to add my 2 cents worth.  When I was diagnosed I told everyone.  I wanted them to hear it from me and get the details from me.  That way there was no misinformation, no one blindsided me and I was in control over what was being said.  At the time this was very important to me.  I also encouraged the women I know to go get their mammograms, to eat better and take better care of themselves, because you never know.

I am doubtful that you'll feel like a gathering 4 days after surgery.  Please don't push yourself,  if you feel lousy decline and give yourself the time to heal.  Your recovery is the most important thing here.  

Runner Girl

Re: Hi Everyone - Newly diagnosed breast cancer

Posted by Charper on Dec 9, 2019 12:38 pm

Good morning BonnieCRunner GirlashconEssjay‍ thank you all again for your suggestions.  I think the main reason I really do not want to tell people is I do not want their "puppy dog eyes" as you said ashcon‍ and I really do not feel very close to them...at all...I love them because they are my family but what happened in the past is really still not gone, I think they really believe that since my sister passed all is forgiven...I really do not feel like going over anywhere so I am going to stay around home with my hubby and son and I really do not want to be crying and all upset the whole evening, that would not be good for anyone.  I am trying to stay busy but as the days go by am I feeling a little more nervous about surgery and how my son will do, I know it is all in the "mom" brain but it is hard not to think about him.  It is really hard to read my own son??? He seems to be normal and I do not know if it is that I did not get the reaction from him that I was expecting or if he is actually doing ok?  This mom stuff is hard too...never been a mom before lol.  I spoke with my dr and she gave me a list of red flags to watch for and none have come up...paranoid?  We always want the best for our children and to make sure that they have a safe place to go and express themselves.
Does anyone have any suggestions on any exercises I could do now...before surgery, that could help me along? Also, any suggestions on boosting your immune system I read that this could help with recovery?
Sending hugs to all.