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

kmakm
Member
8 years ago
@dougal Glad it's all going as well as it can. You'll emerge from that initial fog in a few days. Treat yourself gently. K xox
Sister
Member
8 years ago
Remember the feeling all too well @dougal. Just go with the flow.
dougal
Member
8 years ago
Hi all, thanks everyone for the well wishes for my first chemo and herceptin treatment. Sorry I 've been so focused and overwhelmed with it all haven't been online at all. Have to say I feel really strange today so might be writing mumble jumble!! Extremely tired with a weird head, finding it really hard to think straight! After three days of being wide awake on the steroids that they give you to suddenly completely drained of all energy, weird, took an anti sickness pill this morning as a little nauseous. Luckily had no reaction to treatment on Thursday which was a bonus. I was thinking of you Emim on Friday, glad to hear you went ok. I was not offered cold cap and will just go along with losing my hair around day 13 I was told. Good luck to Harvey for next Wednesday. I will write some more when my brain decides to behave itself and think properly, surely can't be chemo brain already!
kmakm
Member
8 years ago
@Harvey1903 Good on you Julie. Let us know how you get on. All the very best. Kate xox
Harvey1903
Member
8 years ago
Thanks @emim. Start next Wednesday. Prepared for the worst and hoping for the best. @kmakm pineapple in freezer - tick - soft toothbrush - tick. Lucky it's just me and hubby so not worried about anything else. Managed to swing golf club today so getting back on top after diep only to now go through chemo.

Cold cap wasn't mentioned, but happy to go short. Has just taken me three years of growing out dyed brown hair to now salt and pepper shoulder length. Oh well, I'll see what comes through.

Thanks for all the tips and suggestions that everyone has posted, I'm not much of a poster but I do research stuff here as it's people who are actually going through this stuff. Hugs Julie.
Emim
Member
8 years ago
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
Kiwi_Angel
Member
8 years ago
@JenniA that is what I had to do as well - day before, day of, day after and then just 1 dose the following day.
Doin_it
Member
8 years ago
@kmakm @"Kiwi Angel" I have to take 2 Dexamethasone at breaky & 2 at lunchtime the day before next chemo so hope that helps. I actually had a fun day yesterday once I picked up. The staff are awesome
Kiwi_Angel
Member
8 years ago
@JenniA I had an allergic reaction the first time so then they just pre loaded me too. xo
kmakm
Member
8 years ago
@JenniA Where I had my chemo they had one bed in the room of chairs. They put me on that bed and once I was up and running they drew a curtain round me so I could sleep unobserved!

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