Terrified

LisaO

Hi..my name is Lisa
Im 51, married with two children, one 21 and one 18yo.  My life has changed so much over the past 4 weeks Im terrified when I recap everything and need to just push it aside.

4 weeks ago I lost my mother in law (my best friend) to ovarian cancer.  I had been one of her main carers during her 2 year battle. I havnt had time to even grieve her.  
I marched myself into my GP the week after her death for my routine Pap, which was not overdue.  Last year I reconnected with my sister after 40 years, who lives o/s.  I mentioned to my GP that my sister is a breast cancer survivor after having a double mastectomy.  My mammograms were up to date, not due for another 12 months.  My GP casually suggested I get a 3d mammo and ultrasound "just to be sure"..its up to me..so I said lets do this and get it out of the way.
So from that point I have been shoved onto a bus ride that I am not allowed off. Im still not sure the correct way to write my diagnosis but they found two small tumors less than 1cm. After numerous biopsies, tests etc it was off to the surgeon.  So I opted for a complete RH mastectomy, no reconstruction..lets just get this out of me and send me on my way.
I had the op, all went well and I was very positive of my choice.  Unfortunately when my drain was removed 5 days later I was run over by the next bus that I didnt see coming.  2 of my nodes positive.  Aux clearance needed, chemo etc, where do you want to go for treatment?  All I can remember is that I have never been so frightened in my life. I couldnt even communicate as my words wouldnt come out..speech slurred and slow for hours.

My next round of surgery is this Thurs, recovery, then the next round of results.  This time Im going in with no expectations of good news.

I have run my small home based dog grooming business for 14 years.  I have closed shop indefinitely. I am numb.  I wake every morning and hear my neighbourhood coming to life..cars starting up, neighbours going to work, bins being dragged in..and I just lay there trying to remember my own "normal" daily life. 
My friends and family have been supportive but being told "you will be ok", "you are so strong", "you have got this" really doesnt help as each morning I wake up sick and feel sick all day.  Im grieving my life.
I cant help but think if only I didnt mention my sisters diagnosis to my GP.  I think now with what im dealing with, I would have been better off just living life to the full for the next 12 months till my next mammo then just prepare for my twilight exit.  We had been planning an o/s trip of a lifetime after so much time had been put into looking after my mother in law.
I'm honestly thinking of doing as much research as I can, which in itself is scarey, but I really dont want to do this chemo etc.I honestly feel that my family are at a stage in their life that they do not depend on me.  I hate to think of what this illness will do to them.  My daughter is currently 3rd year uni doing radiography, and my son is right in the last year of VCE exams.  
Has anyone here really REALLY contemplated not doing chemo?
I know Im not the first woman to be facing this and courageous stories are really inspiring, but me myself, well I think I know my own limits.  From being independent, strong, outgoing and loving life,  I now feel, if only I just didnt wake up.

Cassina

LisaO, I had a similar ride, no recent sadness but my mother in law died of breast cancer and I thought that will never happen to me! My mammograms were clear, my ultrasound also, however I had Pagets dieseas of the nipple, noticed a tiny red spot on my L nipple and GP sent me to BCI where they said, 100% not cancer,but if still there in 6 weeks we will do a biopsy and guess what 100% cancer, MRI then picked up DCIS, surgery, then another small 4.3mm Her+ tumour. The surgeon said, no chemo, and again no chemo, too small! Oncologist said no chemo, then..... maybe you should just in case! Radiologist said Why did you have chemo? so confusion began, however I commenced Chemo reluctantly Taxol and Herceptin. Oncologist... no you will not loose your hair, guess what....... I have done chemo and worked the whole time, which has taken my mind off the side effects, worst off course was the hair, mainly as everyone knows you have cancer! Nights are the worst and numb fingers and toes, however I must say it was not as aweful as I imagined. Weekly  visits no worries, however all the extra visits were difficult to take time off. Chemo brain, yes, however your dogs will keep you focused and if it is offered give yourself the best chance of fighting the cancer. I did not think the same until I joined this online group and realized so many are much worse than myself. Research yes, but these days Chemo seems to have improved and you may have few side effects.Consider reduced hours and enjoy your dogs, they will give you hope and your customers will support you. 
Day three after chemo always the worst so plan around this and have early nights and you will get through, beanies are normal in winter anyway. 


Best of luck, Cassina

AllyJay

Dear Lisa...I see some similarities in our situations. I also nursed my MIL in the final stages of bowel cancer, and it was just the hardest, saddest thing. Watching this wonderful, vibrant, kind, wise woman, withering away was just horrific. This was twenty years ago, but the loss was still raw to our family. Flash forwards to last year. I was put into hospital for investigations regarding joint pain, rashes and other nebulous symptoms. So my start off point was to try and improve my joint mobility in my hands and knees. That ended up being 16 days of tests and procedures where it was established that I have three overlapping autoimmune diseases. One of the tests was an MRI which turned up....Taaa Daaa....breast cancer. Wham!!! Well, ring-a-ding-ding!!! From the most pressing problem of the day being what to cook for dinner to cancer as well as the other shitfest of scleroderma etc...what the hell happened???  I decided I'd give it my best shot, whilst I was still at Stage 3, Grade 3. If I had been told Stage 4, I would have just said...keep me comfortable and let nature take its course. Pictures of the events of twenty years ago played in my brain, like some horror replay of Groundhog Day. I was NOT going to put my family through that nightmare again. Then I thought that if I just threw in the towel, even although a had a chance, that would be just as bad. So I shaved off my hair (which I had sat on), down to a Marine buzz cut, and prepared for the battle of my life. Twelve weeks of AC chemo and twelve weeks of Paclitaxol and Herceptin followed. (More Herceptin for another six months still underway). The day after Anzac Day, I had a double mastectomy with full node clearance on the left side and sentinal nodes on the right. I feel as if some great monster has swallowed me while, and after being partly digested...left bald...weak..exhausted and titless, has shat me out the other end. But...I'm still here...pathology of both amputated breasts shows NO active cancer, just the denuded beds where it had been. Sure...no guarantees, but to have done nothing, would have guaranteed only one certainty...the plot next to Daffy. The chemo killed off all detectable signs of the cancer and the surgery was additional margins of safety (for me). Each of us is different, and each of us has to decide what is right for them. For me, to fight was right, and if it does progress in the future, then I will decide at that time, whether to continue the fight or to pop down to White Lady and choose my coffin handles.

Brenda5

OMG Lisa you are copping everything at once aren't you? First up, get on to a McGrath nurse to help you make those choices like chemo and where to have it. https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx?close=y

I was the same as you but I and my 2 kids were a couple of years older when diagnosed. Yep I got the same bombshell, a positive sentinel node and back in to surgery for an axillary clearance. Mate, its not as bad an op as the first one so you have already crossed the hardest part, that mastectomy.

Second thing, you have depression which is very understandable. If you aren't one for medication on that sort of thing, get yourself up and out the door walking. It really is the best medicine although you will be dragging your feet at first. My dogs keep me doing it as they love walkies.

As to chemo, its really not that much of an imposition or as scary as your mind makes out. Its a few hours, probably once every three weeks sitting with a drip thing in your arm. Not that bad. Yes you get some odd side effects and everyone is so different no two ever get the exact same ones but keep up with that walking even if its just to the street intersection and back, it helps.

Nothing really "brave" about treatment, you do what you have to do to survive. You may feel down right now but there is a lower down than that and you don't want to go there. Hang in there Lisa, you got this!

Cate64

Lisa I am with @Brenda5 Chemo is nothing like you imagine, nothing like you see on the TV. Although we all react/cope with it differently. I had a 10.5 hour mastectomy & immediate DIEP Flap reconstruction surgery, after 2 x excision surgeries, I was back at work in 3 weeks however, I was not lifting & grooming dogs etc,.
Myself, I had 6 cycles of AC Chemo, had Chemo in the morning went straight to work for the rest of the day. I worked full time throughout. Even losing my hair wasn't so bad, do you know how much time you save in the morning when you just put your hair on instead of washing, drying, styling it?? I always look for the silver lining.. I felt no nausea whatsoever & managed to keep up parkrunning each Saturday, though my 5km run did become a little slower than usual.
Like @Brenda5 said, you got this Lisa.... & your dogs, they will look after you, mine did

fairydust

@LisaO you mentioned your children are not dependent on you now. Are you kidding? There is no age your children will not want you to be there. Ask them if you dont believe me. Just cause they are getting on with their lives doesnt mean you are not important to them.
What a gift you were given by your Gp for recommending a mammogram. It looks like its not your time to go.
Have chemo and live a long and happy life afterwards. 
I know seeing what your mother in law went through would have been very hard.
Guess what you are you.. give yourself a chance. That cruise you planned is waiting all that different is the dates are changed. 
How do I know things will be better. I dont. I do Know that approximately 14monts later after all treatment etc I am now cancer free and looking at cruise brochures. You were given a gift take it life is precious.

melclarity

@LisaO I'm so sorry to hear of your story, and the thing is, it doesn't discriminate and we sadly don't see it coming. I've had it twice in 6yrs and my 2nd diagnosis was very difficult, a single parent in 2015 and my children were 16 & 18. My eldest was in the midst of VCE and had been diagnosed with Depression earlier that same year. Then comes me mid year whooops...a recurrence. Life doesn't wait I learned for everyone else to be ok to manage what happens with you their Mum. My kids were amazing and my daughter smashed VCE and I managed to get through Chemo.

I was so AGAINST Chemo, I did not want it, so to be honest it comes down to your diagnosis, I was ER+ 2.5cm tumor Stage 2, Grade 3 Aggressive, being Grade 3 is what my Oncologist said deemed me for Chemo and as it was a recurrence. I honestly didnt know how I was going to go...and it did dictate my life for 5 months. I unfortunately didn't cope with it but it's because I'm so drug sensitive, alot of women do get through quite well and can work. I didn't have a choice and I'm now 18 months post Chemo and really have my life back in so many ways. If there was another way believe me, most of us wouldnt choose Chemo, but it's the only treatment available plus radiation. 

So I wouldnt just google, I'd talk to professionals about your particular diagnosis as its very personal to you, so treatment is different for everyone. There is alot to consider, so being well informed and knowledgeable will help you make the right decision for you.

Hugs Melinda xo

primek

Hi Lisa.  What a difficult time you have had. An understatement for sure.

Do you know your type of cancer yet?

Many women don't need chemo for cancer. But many women do. Australians have amazing survival rates, 90% survival 5 years on. But that is because of the current treatment regimes. When you see the oncologist ask the statistical difference with or without chemo. I believe if 3 nodes or under it could still just be radio needed. But again...all depends on pathology.

Your sister is a survivor....remember that.

And you can be too.

I was 51 at diagnosis with 3 children, the eldest 21. My sister in law died the week of my diagnosis of endometrial  cancer.  She died because she wouldn't see a Dr until it was too late. It was inoperable and treatment gave her a few more months only. If she had been treated earlier she quite likely would have been cured. The impact on her quite young adult children is profound and the hardest part is their anger...at her not seeking treatment earlier...and guilt...because they couldn't change her mind. 

I was (and still am) terrified it's my fate too. But I've followed all treatment guidelines,  including bilateral mastectomy due to breast density. I got through chemo, it was tough but am now reclaiming my life in the world after  bc treatment now as a survivor. I want to be there to guide my children as young adults. I want to meet their partners and hopefully meet grandchildren. Any guarantees...nope. But I didn't want to get down the track in 2 years and think...I wished I'd done that. 

You are grieving. You are overwhelmed.  But you are stronger than you believe. You can get through this. It's okay to not feel  okay. Retreat,  cry, be friggin angry. That's all normal and okay.  We get it. But then you pick yourself up and on you go. Because why...because you want to be a survivor, one of the 90% that gets to talk about it and support others. But that doesn't mean you have to like it.

Take care. Kath. X

Twiggyjumps

Couldn't agree more Kath. I'm right in the middle of it and I try hard to control the down days so hard. I feel I just got to believe in and listen to my medical team for the plan they have for me because so many lives are being saved around me it gives me hope. The input and help from the BCNA members are helping me through and will help you to Lisa. Glad you posted.

Harlee

LisaO said:

My daughter is currently 3rd year uni doing radiography, and my son is right in the last year of VCE exams.  

@LisaO My diagnosis was during my daughters final year of school. I actually was having surgery while she completed her QCS exams. Then I started chemo during during her final lot of assessment and somehow managed to attend her end of year school formal and graduation between cycles. It was nothing like we had planned and sadly her school results did suffer a bit.
However she was still accepted into her choice of degree at university but at the last minute couldn't bear to move away while I was still undergoing treatment. Instead she took a gap year. I felt so guilty that my illness was having such an impact on her. 
But during her gap year (while she was working in one of her 4 jobs!!) she completely changed her ideas about her future career. Now almost 4 years later she is currently studying to be a Paramedic at a different university. She applied for special consideration for her entrance due to my illness and actually received a hardship bursary! My breast cancer has paid for all her text books! Not quite worth it but better than nothing... 
I'm doing great and she is doing great. 
It's normal to feel scared right now but please don't let fear make your decisions. You ARE stronger than you know. Remember we do have wonderful successes in treating breast cancer now in Australia. There is every chance you can beat this or at the very least have several more very important years with your family. Get through your treatment and then do that travel you have been planning.

Zoffiel

Good luck, Lisa. Its all such a shitfight; new people, new language, new priorities.

 Do what you can for now and it will be enough for now. It's a miserable train to be on and it continues on its track, regardless of where you'd rather be. You are not the only passenger. Marg. Xxx

socoda

Hey @LisaO, the bus you've been thrown onto is a doozy. The route that it takes is certainly not one that we would choose for ourselves. Having said that the interchangeable drivers if the bus have had that special training to be able to guide us along the crap part of the route. The bus takes us to places and to experiences we don't want to go along with but the ultimate destination (and it can seem so very far in the distance) is the goal. Finish of active treatment. The whole picture can be like a nightmare when thought of as a total and yes it is so incredibly overwhelming. The cancer council have a counselling service that might be of great assistance to you. Ph 131120. Talking to someone totally removed who can listen to your worries, fears, anxieties and help you offload some of the stress you are currently going through is invaluable. We can do that here to a certain extent but not to the same degree. Wishing you all the best. Xx Cath

Chris

Hi Lisa, my grade 3 stage 2 cancer was also an accidental discovery after a clear mammogram. I am forever grateful for my 6th sense that sent me back to the doctor. That was 6 and a half years ago, and I am doing well. I did chemo and had a double mastectomy. I was scared of chemo, but it wasn't really that bad, and I am glad to have had every treatment course offered to me. I have just completed 6 years on Femara and now I am back on Tamoxifen due to bone density loss. Your kids will still very much need you in their lives. My 4 certainly do, and though they are all adults now, we still share a very close bond, and I was 52 when diagnosed. I know that they were happy that I went through chemo, and then 9 months later when I decided to have the other breast off, they, and my husband were all very relieved. We don't know what the future holds, but I didn't want to ever wish that I hadn't given it my best shot. Now  I am a grandmother and I am thoroughly enjoying this new phase of my life, and I am still feel very needed by my family.
Chris xx

LMK74

LisaO, sorry you have found yourself in this club that we all wish we weren't apart of. Your kids absolutely do need you. Im 43 and lost my mum to cancer two years ago this july. I took care of her at home and watched her exit this life. Absolutely broke my heart, she was my best friend. Now at a time i need her most she is not here. I did not want chemo either, my thoughts were I'm not married, have no kids, no family but my brother, so what's keeping me here. My mum fought hard in a battle she could never win and it's for her I'm doing this. Yes it's all scary but I believe you can do it.
Hugs Lisa x

Seamaiden57

Dear Lisa O I am so sorry you had the loss of your mother to deal with as well as the blow of battling breast cancer- l know this sounds strange but look on the fact that you were spot on in finding out now about your diagnosis - . It is a frightening thing to face- and somehow all of us find that determination to deal with it. I am not saying it's a walk in the park- far from it but you have to take time for yourself to fight this- your family and friends will support you as much as they can- the support staff at the Oncology Department will do all they can to inform you as to what to expect- everyone is different with their particular diagnosis and treatment so only you will know how your body will react to the specific treatment when it begins. I hope and pray your journey will as best it can be for you.I had my diagnosis  a month before my hubby and l were due to go on a round Australia Cruise - so that stopped that- I had a lumpectomy - 3cm Stage 2 as well as Auxiliary node clearance 2 nodes Grade 3  Hormone Pos and Her Negative I am up to Round 3 of Chemo from an 8 cycle- then Radiation to follow - l don't want to scare you with my tale as everyone is different- but my Oncologist recommended l have my Chemo reduced by 20% as l didn't tolerate it that well. But that's me- you might be different- Anyway l wish you all the love and courage to you and your family Lisa ❤️

Afraser

Dear LisaO

You have drawn a rotten card but it's not the last card you'll draw. I've had a mastectomy, no reconstruction, one affected node, 6 months of chemo, herceptin for 12 months and hormonal therapy for 4 and a half years.

I have also had several overseas trips including Iceland, took on a new job, became a grandmother (grandchild 2 due in 4 weeks) and there's not much twilight in my life yet (and I am nearly 72). Don't let the fear take away your life. Cancer is serious but ordinary men and women can get through treatment with some luck and lots of determination. Your dreams haven't ended, they just might take a little longer.

The first step is done, you won't know how chemo affects you until you start and the sooner started, the sooner it's over. Take heart and believe you still have a future worth living. Best wishes.