Hi Everyone, I am new to this network. My name is Debbie and I was diagnosed with Invasive ductal carcinoma, grade 2, HER positive amplified, oestrogen and progesterone receptor positive, tumour 23mm, on 5th July, so after a life changing shock, out of the blue as no symptoms, at 51 went for my first ever mammogram. Thank god I did as I'm one of those people that thinks nothing will ever happen to! as I live a healthy life, breast fed both my children, never smoked etc. Anyway,how wrong I was, thinking I was so healthy. I have since had a right side masectomy on 13th July, but now feeling very stressed, as am still waiting for an appointment with the oncologist. There seems to be an issue after having surgery at Royal Perth hospital I am now being told I'm suddenly out of catchment area for treatment, although not told this when I saw surgeon. I cant believe how stressful this has become waiting for chemo to start and not knowing when. I would just like to ask everyone out there who has had chemo, how long after surgery they commenced it as I'm worried the longer I wait the less effective treatment will be. Any other advise also would be greatly appreciated. Love to hear from anyone out there.

Hi @dougal - I did a mass facebook update and made the statement loud and clear that I am not interested in anyone telling me their "stories" on cancer. My thoughts are - If you choose Chemo - you have to commit to it. It is like studding for an exam or doing anything else really hard - you have to commit. Both feet in. I call it the golden elixir of life. Every breast cancer is so different. I also told people that if people tell me to keep positive I will ignore them. For me it is acceptance. it sucks that the cells in your body lost connection with the mother ship and went rouge. It just sucks. Accept. No one at fault. Just do what you can to provide a healthy environment for your body. Accept new boundary - move on. There will be bad days and hopefully more ok days. Move on to choosing the path to fix it that is proven and that you can commit to. I choose chemo because for my breast cancer (DCIS + Triple Neg 10 mm invasive Feisty f@cker) the best survival rates proven were chemo, surgery and radiation. I don't have a long treatment but have an increased chance of developing Feisty f@cker version 2.0 within 3 - years post this one. Each cancer is just so different. You will see the oncologist a lot over chemo so don't be afraid or fear that you have all the questions or all the answers on day 1. There is a lot of support. There are side effects loads of them and depending on the treatment there are ways to minimise some. But it is doable. My priority was - get a oncol. you trust. Commit to the process - it is a marathon. Accept. Ignore the noise - people say dumb stuff. Forgive them - for being humans and feeling unable to help you. I "politely" say - i am sorry but that is not relevant to me. I had people get a bit upset but whatever I focused on the people that are big enough to understand that you have to commit 100% to your path and doubt and what is the latest on google/news is not relevant. Good luck on your journey I am glad you got the support you need.

I'm having my first appointment with my oncologist on Tuesday 7 August. I guess I will find out more at that appointment, but my surgeon tells me I will need about six months of chemo based on type of cancer and because I am premenopausal. I have avoided talking to people about wellness and natural remedies- as you say, why did we get cancer when we are in the same environment as everyone else. I don't think it is helpful for people to suggest that what toothpaste you use or what vegetables you eat (or didn't eat)caused it. It happened and I think it is best to focus on getting better, not finding blame for why it happened. In my case, I am childless in my early 40's and my aunt was the same, and it is probably genetic (I am getting that tested). In any event, regardless of whether it is genetic or not, my aunt is still here today after conventional treatment and so is a good role model for me. The treatment I am getting is a lot more advanced than what she had 25 years ago - the medical profession is constantly searching for improvements.I know someone who is not here today due to spending time on natural remedies before finally trying mainstream medical treatment - by which time it was too late.

Yay, never thought I would be happy to see an Oncologist!!! After 3 days of many phone calls to hospital, breast nurses at clinic, doctors and even the central referral centre!! so stressful and not bloody fair I'm having to deal with trying to get an appointment sorted out so I can start chemo and get on with my life! Anyway eventually got a phone call to go in on Monday 6 August to see Oncologist. I must have sounded like I'd won lotto! so happy to just know when the next step is happening. I f anyone can give me any tips what to ask the oncologist that would be awesome. I've read some articles on chemo and it's freaking me out, the unknown. Also, has anyone experienced any side effects from the Herceptin injections that I will also need. Another thing, I'm finding pretty annoying is along with all the support out there from friends why do some people try and tell you to drink some special herbal tea or try all these alternative natural so called cures. I don't want chemo, anymore than anyone else out there but surely you have to trust the conventional medicine over alternative that, frankly, have never been proven to work. I'm feeling like I caused this cancer with comments also on how my toothpaste, chemicals in the home etc caused this to happen to me. Honestly, Arn't we all exposed to chemicals, car fumes etc etc etc even these wonderful people that think they are so good using all these expensive natural remedies for everything, that it would never happen to them!! Sorry, on a bit of a rant, great to talk to all you guys out there.

Hi dougal and emim, so I have my first oncologist appt August 8th ! By Thursday all 3 of us will finally have our regime. I too have found it soooo hard waiting! My surgery was July 3rd. I went back to work 2 weeks later and am now feeling very "over" this waiting game.Best wishes to you both.xx

I am still sitting here getting my chemo after arriving at 9am. I am now onto my third and final which is trastuzumab (herceptin) for 90 minutes. After almost deciding not to bother with the cold caps but the lovely nurses convinced me to give it a go. It doesn't feel that cold to me, so I am not sure if it is working (but maybe I'm the scarecrow). I got my hair cut to a chin length bob yesterday and it does look quite good, so we'll see if I can keep it. If not, well it's going to a good cause. So sorry to hear you had a reaction @JenniA. I was feeling a bit nauseous, but that's all. I am not sure if it was just nerves, but they told me to have a tablet for it and I seem good now. I did make a bit of a mistake yesterday, I was meant to take the dexamethasone and completely forgot about it until 9pm - I rang the 24hr nurse and they said it was ok, just to take it then, again first thing in the morning and then tell the nurses. I woke up at 5:30am and took another dose then, and then they gave me some more through my IV before starting the chemo. I have always had a great memory but have found that even though I think I am feeling reasonably calm, the day before appointments and treatments I am really forgetful and tired, and I understand it will get worse with chemo brain. I am now getting people and phones to remind me.Thinking of you @Harvey1903

Waiting for chemo!! | BCNA Online Network

63 Replies

Doin_it
Member
8 years ago
@kmakm now that sounds better. I’d have to put something over my head in case I slept ‘cause my mouth hangs open when I’m asleep. Apparently!!! Haha
kmakm
Member
8 years ago
I had an allergic reaction @JenniA. It'll be quicker next time as they'll pre-load you to counterract the reaction before you start. I had Phenergan which made me so deliciously sleepy I snoozed chemo away.
Doin_it
Member
8 years ago
Had 2nd TC chemo yesterday & had a reaction, soooo, more steroids & a half hour wait, then they began again but slowed it right down. Long day!! I was bouncing off the walls last night
Harvey1903
Member
8 years ago
@emim @Douglas. Hi I'm off to oncologist tomorrow for first appointment. Will probably start next week. So I'll be following you guys. Good luck to us! ;)
Vangirl
Member
8 years ago
Best wishes for first chemo @Emim and @dougal xxx
Emim
Member
8 years ago
Thanks for your thoughts @kmakm. You're right - eyes on the prize. I am leaning towards not bothering with the cold cap

I had a tour through the chemo ward and there were lots of chairs in a row. I didn't want to spend too much time there so as not to intrude on the people getting treatment today. It was good to see it though, so it feels a bit more real.
kmakm
Member
8 years ago
The cold cap didn't work well enough for me to persist either @Emin. I had TC, used the cold cap twice and then gave it away. If you do use it, make sure it's very firmly fitted to the top of your head. It needs as much contact as possible.

Best of luck to you and @dougal. You'll be right, eyes on the prize. K xox
Emim
Member
8 years ago
I will be thinking of you having your first cycle of chemo tomorrow @dougal

I had an appointment with an oncology nurse this afternoon where she went through what to expect before my first cycle of TC chemo on Friday and all of the possible side effects and ways of dealing with them. It was an informative session. They gave me a little pack with a soft toothbrush, oral care products and a MooGoo oncology care pack. I read about MooGoo in another post on here and I wasn't sure where to get it, so I was happy to get that.

I am not sure about using the cold cap and staying for the extra time, but will think about it. I am getting a hair cut tomorrow morning, so I will at least have less hair to fall out if it does. My hair is currently a bit longer than shoulder length, and I am planning on getting it cut at least chin length, or maybe a pixie cut, if I get the nerve up.
Sister
Member
8 years ago
Honestly, @emim - the cold caps didn't work well enough for me to persevere but I would have if they had. (IIgot a bald strip across my head from ear to ear and that was too much for me to want to go on) There's other women on the forum who have had really good results.
Emim
Member
8 years ago
Thanks @Sister. My oncologist told me about cold caps and that it can be time consuming and doesn't always work that well. I will look more into whether I want to try it. I have booked into a Look Good Feel Better course in September, and I am looking forward to that (I have actually never been that good at styling my hair or putting on makeup).

My mum told me about a place her friend went to where they have wigs and other products for people with cancer and we are going to check it out together. There was also a lot of useful information about services in Canberra at the Canberra Hospital which I took home with me after my appointment last week.

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Waiting for chemo!!

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