Forum Discussion

Member

12 years ago

My first post - I'm new here

Hi there,

This is my first post on here, I thought it would be more of a "chat room / forum" type of arrangement with different sections for different topics, so I'm not sure if I'm in the right area, but it seemed like a good place to start!

I found my cancer on my 32nd birthday - 21/09 was diagnosed on 01/11, and had lumpectomy and lymph biopsy on 05/11 - my mum's 60th birthday...birthdays have not been so good this year!

I'm in a bit of "down time" at the moment - recovering from the surgery, but getting ready for the next phase (portocath insertion on 28/11) - I'm terrified...seriously, reading a first aid book makes me pass out - I can't believe that someone will be "operating" on me while I'm awake! And the needles! I HATE needles... Buying lots of Emla but I've been amazed at the general lack of knowledge by the medical people I've dealt with so far about this! They either haven't heard of it, don't know how to use it properly or frown upon it, like it's an "easy way out"...sorry, but I hate pain!

I made a joke to the oncologist that I would quite happily be knocked out for the next 17 weeks, and they could just wake me when it's all over - she couldn't understand why I would want to miss this experience???

I think sometimes I'm not worried enough about this - apart from a scar that's pulling in my armpit, life is pretty much the same - should I be a wreck right now? It's very easy to forget that it's actually happening. I'm sure once I start my chemo (03/12) it will all become a reality, very quickly.

In other ways I think I'm over-worrying, planning how I'm going to function when I "can't function" - to then be told things like, "You know, lots of people have no side effects at all, don't anticipate things that might not even happen" and "It all affects us differently, 10 people could have the same cancer and the same treatment and all have a diffferent outcome..." I'd hate to look back and think "I wish I'd thought to do ..." or "I should have sorted out.... before the treatment started" etc.

I'm not really sure what I'm meant to be doing to prepare, if anything - the GP, surgeon, breast care nurse & oncologist have all told me that now is not the time to be changing anything, but I thought I'd have to improve / change my diet, start on supplements or an exercise regime, ANYTHING to prepare my body for the supposed chemical hell that they are about to unleash on it! I know chemo saves people, but it still seems like such a primitive form of medicine, and if you look at it with any sort of common sense, it really doesn't make sense - damaging healthy cells in the process of killing bad cells...and when you consider the great lengths people go to to AVOID being exposed to nuclear material and radiation...I'm scared and nervous that I have no other choice.

I know it doesn't sound like it, but I've tried to keep positive, I was pleasantly surpirised that my treatment, all going well, was only going to take 16 weeks...somehow I'd got the idea that it would be like 6 months to a year...so that was a bonus! I think I'm coming across to others as more positive than I actually am, because I have to convince them that I'm not dying...as soon as I tell people that have cancer, they either cry, or say "Oh, I'm so sorry..." or something along those lines, as if I just told them I only have a week to live!

It's been hardest talking about this with my nan, she's a very young 72 and I think she's terrified that her eldest granddaughter might go before she does...it's just not how things are supposed to be...trying to reasssure her and tell her every good thing that happens...

My partner, I think, is still in denial - (I am too, a bit) I think reality will hit him once chemo starts too. Trying to talk with him about things like "feelings" and "emotions" is all a bit too much (as is the usual male fashion!) and he either tries to calm me down by saying things like "Well there's no point in worrying about that now, because there's nothing that can be done about it til the 28th" and "Try not to think about it and get yourself all worked up." It doesn't help. At all. I shouldn't really blame him, he's trying his best, but let's face it, we are both in a situation where it's like taking the exam before doing the course!

My mother is also being impossible, she's a palliative care nurse - so she's full of advice and very supportive, I've squeezed hell out of her hand through all revolting procedures - but then she says that I'm not respecting her when I get frustrated and nisunderstand things she says...I thought she would be expecting frustration and anger from me?? That's all part of the process, isn't it? Hopefully that will all blow over...

Wow, clearly I needed to vent...sorry for the epic first post, I'll try & keep things a little more concise in future postings! Any advice, hard truths and words of wisdom are greatly appreciated, I feel quite overwhelmed by the whole process - I thought there would be more information offered, as I'm finding now, it's not given til you ask, but if you don't know what's going on, how do you know what to ask??

Aaargh! That's where I'm at right now! Can't wait to look back on this post in 18 weeks time and laugh at myself!

From Bobbie

13 Replies

NaturalBel
Member
12 years ago
I am so glad I was able to offer some ideas, that were an accumulation of things offered to myself, this time last year. I bought a lot of stuff I didnt used, so dont buy until you need it, save your money. The basics are always the same though. There is information available on this website about ideas to tackle the financial side, other people's advice etc. All subjects are covered here or in the My Journey Kit.

This website is very unique, I recently was talking to a health professional who has had a stroke and he said there wasnt a network of support for him, like I had for Breast Cancer, we are lucky!

I cant imagine how much worse that year would have been for me, if I sat at home worrying, and in the dark about everything.

Good luck X Bel
yetbeung
Member
12 years ago
Wow, that was an awesome post...they should print it and include it with the BCNA pack... :-)

I'm starting to realise already before this thing even starts, that it is going to be the little things that are the most help. I'm trying to convince everyone around me that it's not money that I need ( at least not yet) because that's all people are focussing on..."What about your bills, rent etc" and frankly, that's the least of my concerns. I'm hoping that Zac will let people help if they offer, I think he's taking a bit of a blow to the male pride, hasn't really been in a position before where he's neeeded or had to accept help.

I already get my groceries delivered, I'm not a fan of grocery shopping!

Thankyou again for your advice, I can tell already that this place is going to be my new best friend

Thanks :-)
AnnaB
Member
12 years ago
Your portacath will hopefully be your very best friend. Sounds like you're doing all you can to prepare. They do have excellent sedation for the insertion, ask for more if you need it. Like Janey I HATED the whole journey analogy at first, I mean screw the journey - this was not the cruise I signed up for! I'm a nurse with a pretty good imagination so I was terrified. However, everything was manageable during my chemo and radiation. Also you never need to apologise to us for having a good vent - where else can you go where you know others really understand, where constantly 'being positive' is not a requirement.. Good luck -
yetbeung
Member
12 years ago
Thank you Leanne for your suggestion! I have seen others mention ice on here, I'm definitely going to be doing that. Same as drinking a lot of water before, during and after, if I can.

I think the part for me that is scariest now is having the Portacath put in... ugh... I'm hoping that as I've been told a million times, they have drugs for just about all the side effects...fingers crossed...
leanne_29
Member
12 years ago
Hi Bobbi - how are you ? My best advice for chemo is suck on ice before,during and after your treatment. I started chemo 11th Jan 13 and finished 1st May 13. I had 6 rounds of FEC every 3 weeks and suffered badly with mouth ulcers but was not told about the ice until round 4. The ice helped greatly,good luck for the 3rd Dec - I will be thinking of you. Take care Love Leanne xx
Janey235
Member
12 years ago
There is an overwhelming amount of info to get through. The list of side effects can knock your socks off. But as my husband pointed out to me, if you read the info from any drug and took it all on board, you'd never take anything. I have to laugh at drug companies though when they put on the side of the sleeping tablets box, "Warning, this drug may cause drowsiness, do not drive or use heavy machinery". What a hoot! Seriously though, once I started to read the info in the My Journey kit, I read everything in it from cover to cover and it was a great source of information. I was armed and ready. I also got my husband to read it which I think was really good for him to understand. There were certain things along the way that I needed to research thoroughly like reconstruction and BCNA helped me to make a start. I am so so glad I joined, I can't thank them enough as I have found some really lovely new 'pen friends' or 'inter friends' as my daughter calls them. You do learn to skim over some of the more graphic information and concentrate on what you need to know. It does become easier once things settle down. Hang in there :) Janey xxx
yetbeung
Member
12 years ago
Hi Janey, thank you for your reply. Normally, if l don't know what something is, how to do something, or how something works, l would head straight to the internet to educate myself...l like to think that l am sensible enough to be able to tell the reliable information from the rubbish, & it's usually been great... just last weekend did Zac & l manage to dislodge a 5c piece from the washing machine pump thanks to a tutorial on youtube!! But with this, l haven't googled a thing, not even once - & it comes back to the fear of the unknown. Might seem silly - normally if l don't know, then l want to find out - however this topic is so damn terrifying that l just don't want to know! (And as you say, l'm terrified enough without adding to the mix a storm of stats, conspiracy theories & horror stories. I don't need that - my mind is plenty capable of brewing up its own horror stories, & needs no inspiring!!) Like you, l didn't want to read the BCNA stuff either, & even now l'm just warming up to the idea of reading through the printouts given to me by the oncologist about the chemo drugs l'll be having - scared of the side effects & the list of symptoms to watch out for. I guess l really am expecting the worst, but l'm certainly hoping for the best! It's funny though, l thought l was being denied information at the beginning, & was going nuts from "not knowing", but now there's an abundance of accurate & useful information & l'm too scared to look at it! :-p
Janey235
Member
12 years ago
Deanne and Robyn have pretty much said it all. You are certainly not alone and you are going through what we all feel at the beginning of this journey, fear, frustration, anger! The list goes on. I've said this before in my posts, I got really annoyed with the word "journey" when I first was diagnosed. It seemed to trivialise the fact that I had cancer. I didn't want to look at the 'My Journey' kit at first. I thought, how do they know what I'm going through and how dare they call it a journey. I didn't understand then what I do now that journey is the exact word for it. I seemed to depart from my normal life and head down a direction that was forced on me and I wanted to turn around and go back. It took me a few weeks to read the material sent out by BCNA but when I did I started to appreciate how much knowledge I needed to get through this. And more importantly, how much 'internet jargon' I needed to avoid. Don't fall into the trap of googling too much information like I did at first. It's terrifying and this 'journey' is frightening enough without being frightened silly to the point for being petrified by reading the horror stories out there. I remember being so filled with dread after reading too much I thought everything was going to happen to me. So Bobbie if I can add to the excellent advice given already it would be to stick to the reputable sites like BCNA and Cancer Council of Australia. Read the information given by our Pink Sisters here which I have now found invaluable and wished I had joined right at the beginning and not waited for months at the time I really needed to find this wonderful support. So Bobby, you go right ahead and vent, rant, ramble, release. Whatever you want to do. We've all done it before and we are hear to listen and 'hold you hand'. Sending you a hug. Love Janey xxx
yetbeung
Member
12 years ago
Thanks for the replies. I think my biggest problem is fear of the unknown, and frustration, that neither myself or anyone else can do anything about it! The stupid thing with this stupid condition is that there are so many maybes and not sures.

It is encouraging to know that I'm not alone, I can't wait til I'm 9 weeks through, that's over half my treatment, all going to plan!!
Robyn_W
Member
12 years ago
You are definitely in the right place:) I just want to reiterate what Deanne said.Prepare for the worst and hope for the best.I am having my 3 rd chemo next Monday.I was sure it was going to be the worst thing ever,and it definitely wasn't.The way I prepared for it was to do what I was told: i.e. Drink lots of water in the 2 days before and the 2 days after.Especially after,as you need to flush the toxins out.I didn't change my whole diet,but I certainly try to eat only what is nutritious,as I figure the body needs a bit of help at a time like this.I think fibre is important,as constipation can be a real problem in the first few days because of the drugs.Rest when you feel like it,but remember that exercise,like daily walking is especially good,as it decreases your fatigue,and of course is good for your muscles,bones and heart.Get a good skin cream,like Moo Goo(that's what I got given at RPA) and use it everywhere,as your skin can get dry.And make sure to clean your teeth after every meal,as mouth ulcers can be a problem.I haven't had them,but I just get the yucky mouth taste,and keeping my teeth clean,really helps.I bought Biotene toothpaste,as it is not too spicy or frothy,and also the Biotene mouthwash.Apart from that,I haven't needed to buy or do anything else.I feel pretty good actually.I hope you sail through it Bobbie.Jump back on here,and let us know how you go.What's the bet , in another month,you will be on here giving advice to more new ladies.You are where I was 9 weeks ago!xxoxoxoCheers Robyn.