A new member and really wishing I wasn't
Comments
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Please don't give up. Right now it seems like this is impossible to cope with, but you will. You will have chemo and cope. You will come to terms with this in time. But it's a terrible shock right now. Try and take this one day at a time. I might be naive but I suspect most oncologists know their medicine. Some have better bedside manners than others, but technically they are much the same. If you can't afford private go public, they have good doctors and nurses. We are fortunate to have such a good health system in Australia.
Very best wishes Karen1 -
Please don't give up. Right now it seems like this is impossible to cope with, but you will. You will have chemo and cope. You will come to terms with this in time. But it's a terrible shock right now. Try and take this one day at a time. I might be naive but I suspect most oncologists know their medicine. Some have better bedside manners than others, but technically they are much the same. If you can't afford private go public, they have good doctors and nurses. We are fortunate to have such a good health system in Australia.
Very best wishes Karen1 -
All I can say is that I'm a public patient and was in and out of hospital whilst having the AC chemotherapy (38 days in all over the twelve weeks) with neutropaenia (x3), anaemia, acute pancreatitis, (due to my preexisting autoimmune diseases reacting to the Neulasta, which was given for the aforementioned neutropaenia), terrible rash, spiking fevers and so on ad nauseum. On one of the admissions, the woman in the bed next to me was a private patient. One day she was talking (loudly) to her visitors, and rabbiting on about how she couldn't understand how people would say they couldn't afford private medical cover...she couldn't understand how they could do without it! Well...she lay in a bed identical to mine, and piddled in the same loo as me. The same nurses answered her bell (and no quicker than mine). She ate the same food and was given meds no different from mine. So big deal, she had her own doctor visit her, but how would one know which to choose, as you have mentioned? My oncologist is not what I would call "Warm and Fuzzy", but you know, I don't see her for a social visit, I see her for her (great) expertise. My surgeon, I have nicknamed "Tinkerbell" and she too, I would hazard a guess is on the Autism Spectrum Disorder chart...totally lacking in people skills. There too, I'm not wanting another friend, I see her for her skills with her scalpel, and these, I understand are really good. Look with an open mind at all your options and then put all your trust in your choice. Remember...how do you eat an elephant? One bite at a time. How do we all get through this awful business? One minute, one hour, one day. at a time. Virtual cyberhug coming your way (( )).
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Hi @sandramj it is a shock ....
- you can ask to see the public oncologist and explain you are on a pension.
- You have a right to be able to access what is affordable for you.
- TAKE a deep breath and let out the stress
- DO you have a breast care nurse ? give her a call and ask her for some options re oncologists etc and ask her to help with the information about costings etc.
- YOU are NOT a spoilt brat you are a women caught on the roller coaster of the breast cancer demon.... we have dips and hills and quick turns that we dont see coming...
- I wish I could just say that it will be ok.... it will be hard it is for us all but you can do this... one step, one breath at a time.
Soldier Crab
xxoox1 -
I chose public even though I have private health cover. What I really like about public systems is the team decision on treatment...not just one oncologist. Decisions and treatement are made on your current health, your type of cancer and good clinical trials which demonstrate the best treatment known for your type of cancer. Whilst keeping hair may sound fantastic I'd be making decisions on stats not hair. Because I had a her2 cancer I had a whole body contrast CT scan and bone scan...all covered by Medicare. I live in rural Australia so chemo was managed not by a breast oncologist but a general one. But my initial consultation was with a breast oncologist and decisions made along the way was always in consultation with him. My treatment was stopped early but this was after a discussion with the oncology team weighing up risks. Many of those public oncologist work in private practise also.
So please don't feel you would get lesser care if you choose public. (Gosh ...that's where the clinical trials are run anyway)
I hope you feel less stressed soon. Lymph node involvement doesn't mean it's not curable. Remember that. My niece had 10 positive nodes and is cancer free 14 years on. I look to her for inspiration.
Take care. Kath x2 -
Sandra, I have private health cover but my latest mastectomy/diep flap recon was done in public and I still kept my PRIVATE Surgeon and Plastic Surgeon because they also work in the public system. Can you ask your Surgeon if he does too? I saved myself $10,000 and believe me radiotherapy I also did public...chemo I did private and lumpectomies private. I have a health care card and get discounted bulk billed for tests. Ask them about being on the pension, Im sure there are things that can help absolutely!! M x0
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Hi Sandra, I am so sorry that you didn't get the result you hoped for and will need further treatment. I can't provide any info as I didn't need chemo but you will get a lot of help and support from the wonderful women on this forum. I did want to mention that once we have been diagnosed with breast cancer none of us receive free mammograms through Breastscreen. We are deemed to need closer monitoring. I have my 12 month check up with Dr DiViana in August and am booked in for an ultrasound rather than mammogram. You are definitely not sounding like a spoilt brat - this is a shocking process to go through and this is the place to vent your emotions! I wanted to send you a hug and let you know that you are in my thoughts. Jane xx2
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thank you so much for your posts...... My latest update s it seems to change daily - or hourly sometimes.
I contacted the oncologist regarding payment and pension and to my absolute delight found out they bulk bill all chemo and the actual Doctor sees me after each treatment (included).
With the radiation they have a place in the same building for private patients but also the same company has a facility at the public hospital, however, as he said there is a waiting list. So I intend to approach the company for "private patients" and negotiate a mutually satisfying cost.
. I am finding like most of you suggest feelings and emotions change many many times - I think its part of the grief cycle, where I found out it was cancer but I blocked it as being real as I had stuff to do before I could have it removed etc and managed to keep it at the back of my mind. Then when they found more lumps I was too scared and anxious to cry, kind of like "holding on" with NO IDEA if the results would be good or bad. Then the surgery, and the relief that was over - still no tears. In fact great excitement I felt so good. Knowing I had to go back for results I could NOT feel in my gut if it was good or bad... I just did not know.. Then to find out it was in the lymph node (The only one he could or X-ray people find) or as Dr advised there was lymphatic invasion.... Shock..... Then Dr mentions the only word I did not think I could ever deal with - chemotherapy!!!!! Dr says its good that my cancer was 100% oestrogen receptor positive - Her2 negative so can be treated with medications too. Whatever that means. As we are driving home I cannot help but cry and feel sorry for myself.... Ive had enough illness in my life - I deserve a break....... That day and night I cry on and off and feel devastated and as per my last post, like Im not sure I will or want to fight on..... It feels like the more bad news I get the more that is to come.......
For the first time )possibly ever) I talk to my sons and cry and speak of my fears, without covering up and being the strong Mum who can handle anything. They're both around 40 after all. Time to start being REAL and looking after myself in lieu of protecting everyone else. But that's been habit for over 60 years so gonna be hard to retrain.....
Off to the heart specialist to have a heart echo to see if I can have the chemo next. Results will be faxed to oncologist but I felt the results would be good by the persons VIBE. That's another road crossed so on Monday its off for a CT & Bone scan to see if its spread anywhere else. Then on Wednesday to oncologist to start the treatment plan.
I am back on track today and feeling more positive again (at this moment) but it is such a roller coaster ride and as Im passing each hour, day I hear of so many other people who have had and survived breast cancer. Thats great but doesn't give me 100% confidence I will be okay. People say to me that Im not sick, remember before you knew you had this you were really well......... Yes, I did feel really well, before I found out, but I don't now. I know I am not well now.... I have had cancer growing inside of my body and there may still be some there anywhere stalking my body...... The treatment of chemo, meds and radiation is such an assault on a body I am fearful my body is going to be strong enough to cope... Ive had a lot of illnesses and take a lot of meds... just hope my body can carry on to fight this fight too.
Sitting while the chemo liquid is fed into my body I cannot help but feel Im having the worst sort of poison you can ever have without killing you, and I wonder how I can be "appreciative" or grateful of this fluid? Ill need to turn it around to make it a life saving syrup somehow in my head so my body won't reject it, that's going to be tough. Visualisation, a recording of my voice telling me how good this will be may help.
Has anyone else had these thoughts? If so how did you handle them?
Wow. Its been such a huge "vent" or BLOG again. But other than the question above I think it was more about me downloading the stuff that has happened in the last couple of days that I needed to "deal with"
AGAIN thanks to all of your wonderful people on here supporting us newbies and having patience with what must seem like extreme rambling - maybe some not even lucid........0 -
The whole business is just horrible, isn't it? I was in hospital last August for tests to establish exactly which auto immune disease (or diseases) I had, and what the full extent of involvement there was internally. Well, on the chest CT scan, the lumps in my left breast turned up. Shock, horror, fear, despair....how many other feelings? ...many. After biopsies and other tests, it was decided that I would do chemo first, to shrink the buggers first and to contain them. As was explained to me, the breast cancer within the breast (or breasts, some "irregularities) were spotted in the other one too, would not kill me. Cells breaking off and going walkabout and setting up shop elsewhere might. So, 12 weeks of AC therapy, followed by 12 weeks of Paclitaxel and Herceptin, followed by bilateral mastectomies with full node clearance. I cannot have radiation due to my scleroderma, so they're going hard with the surgery as a result. I had a terrible run with the first phase of the chemo, but I told thought to myself that if all these good cells were taking such a hiding, well then the bad cells were getting beaten up too. With the current situation with Isis, I thought of it as follows. The cancer cells are like Isis fighters hiding in civilian areas. I plane comes over and drops bombs (the chemo). Isis fighters are killed, unfortunately, there is also collateral damage to the civllians (the hair follicles, lining of the mouth and gut, the fingernails, the blood cells etc). However, between each bombing raid (chemo session), there is three weeks to recover. So long as the baddies got wiped out, I couldn't care less what the collateral damage was...I did bounce back each time, ready for the next round.I've never been a quitter and I don't intend to start now, but that doesn't mean that there haven't been times when I've thought that this was all going to bee too hard, and what was the point anyway, it would probably get me in the end anyway? But the I give myself a mental enema, pick myself up, dust myself off, fill up my humour tank, and push on.
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@sandramj hi , hope you are feeling less emotional today after your recent diagnosis. At the beginning it is such a roller coaster because you have so many tests and so much to digest. I felt the same way with the mammogram, ultrasound, heart test, ct scan, bone scan all happening so quickly. My cancer was 100% estrogen driven and the cancer was found in the sentinel node so when I had my mastectomy they also took out 15 lymph nodes. Had 6 months chemo and 6 weeks Radistion daily . It really does feel like a whirlwind but once your emotions settle you will get that fight in you. There is so much improvement happening for the cure of breast cancer now. It doesn't feel like it right now for you and you are going through all those normal emotional feelings. Gosh I felt the same. The C word absolutely freaked me out. I am 4 years now and although I have those negative feelings and worry creeping into my thoughts usually at 3 am I try to be positive. You are doing so well stay strong.
hugs to you
Di xx3 -
@sandramj It's me again . I forgot to mention my specialist performed her surgery in public and private. I went public for my mastectomy and st the same hospital Tweed had my chemo as the GoldCoast Zuni hospital wasn't completed. The staff at oncology were exceptional and they were all so positive and caring. When you do chemo for 6 months you get to know them all so well. I had a choice of traveling to Brisbane daily for 6 eeeks for radiation or John Flynn where I had to pay. I decided in John Flyn for radiation. I was probably out of pocket about $2500 over the 6 weeks as each week you paid you also claimed electronically with Medicare a portion and it is back in your account the next day. As the eeeks go by the amount gets lessor. I have a friend who had his chemo at Gold Coast and thought it was great. You do get billed for some of the drugs for chemo which is minimal. Hope this helps clear your mind.
Di xxx2 -
Thanks so much for the info. It is such a great support to know others have not only been through this but are on here either still fighting or recovered and clear. At this stage I'll be around on this for quite a long time and I hope sooner rather than later I will be feeling happy with positive results and I'll be able to "give back" and help others new to the C Train. Its kinda like that with many various stations along the way, but the end of the ride is to a "heavenly" version of our life and earth as we knew it. We arrive with a whole new perspective and priorities on life and very aware of living for quality than quantity. So on that note my next stop is the CT & Bone scan - Im hoping there is a nice coffee shop or little shopping centre at that station as my daughter is taking me and we'd like a little NICE time together. Thanks so much ladies I feel like we are all together fighting the same war in various "camps" and with us sharing information and supporting one another our soldiers are gaining huge advantages by doing so. Thanks TEAM.
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Chemo isn't a walk in the park. And it is hard voluntarily having something that will make you feel ill. The old saying the treatment is worse than the disease rings true at this early stage, but certainly it doesn't as disease progresses. The whole plan of course is that the disease doesn't progress.
But know this. You are stronger than you think. 1000s of women have done this before you and will so after you. Your experiences are unique to you and you have every right to be angry, frightened, encouraged and apathetic. These are your feelings. Acknowledging them and writing about them really does help you understand yourself even more.
Fear is very real for all of us. Even after treatment. But at some point we learn to accept that as part of the new normal and most find a way to go on and live a life with hope and joy again.
I'm glad you have the oncologist sorted and you have told your family. One step at a time. You are slowly ticking off those boxes, not an easy thing to do in the early days.
Hope your day today brings no new surprises unless joyful. Kath x6 -
Tomorrow I go to see oncologist for first time after surgery removal of invasive ductal carcinoma (12mm) and finding cancer in the only lymph node they found. Had CT Scans and bone scan yesterday so get those results then too tomorrow.
Question - has anyone on here tried any alternatives to chemotherapy?
Any thoughts please I am very concerned as I'm 66 and unfortunately not a great genetic heakth background.
AND IM AS SCARED AS HELL OF THE SIDE EFFECTS
also my cancer is HER2 negative but oestrogen & progesterone positive.Tagged:0 -
Hey Sandra, I know its incredibly overwhelming. There was a discussion recently of alternative treatment to chemo but there honestly isnt, not at this time as much as we all hope for something new. I use alternative therapies but only post chemo in recovery and in conjunction with medicine. I honestly would wait til you see your Oncologist as all plans are different so take it 1 step at a time. We're all here to talk anytime to encourage and support. Just remember no matter what you are going to ne OK very important. X Melinda2
