Day 50

Hi Annie

This is the web site to go to, to find out more detail about the caps. www.penguincoldcaps.com which will divert to www.msc-worldwide.com. I have used the caps successfully and they are easy to tolerate. If you have  long hair it is heartbreaking to lose it and then have to start again with hair that is never the same from what you had.

If you want the caps I will have the coordinator from the UK email you with the costs. Once you have the schedule & dosages for the  chemo you are having, the regime for the caps usage can be provided as different drugs require a different time schedule. Depending on where you are located I can have the caps to you within one week unless it is urgent and an overnight courier can be arranged.

Sadly at this stage there is no Medicare rebate or Private Health Fund rebate available here but if enough people are interested I will be lobbying the government to get changes made there to get them funded as it is done overseas on private health cover.

This is a link to the information that the Adelaide Cancer Centre have about the caps on their site:

www.adelaidecancercentre.com.au/supportive.html

Please ?feel free to contact me direct as I should be able to answer any questions you may have: 0412 713 732

Kind regards?

Ness x

Thanks for your post Sharon. Can I ask - how did they go about reducing and lifting your other breast, and how do they both look now? I'm actually considering getting my other breast removed as well, so it may not come to that for me, but if it does any info you could shoot my way would be most appreciated.

It's true that you look at life differently once something like this happens to you. Especially in regards to the people around you.

I am sure my 'change' after this will be for the better too. x

Hi Janet - thank you so much for your post. I have to say, it's definitely put my mind at ease a little! I think I am prepared for the worst so anything better than that will be a bonus.

I start my chemo one week today - it's the same as yours (TC), so thanks for all your info. :)

Hi Ness - I am definitely interested in finding out a little more. Thanks.

Hi Annie

I don't know if you are interested but Penguin Cold Caps can prevent hair loss provided they are used for your first & subsequent chemo's. If you are interested in using them I've just created a group on this site called : Penguin Cold Caps - Save your hair from chemo!

Let me know if you would like to receive more info about them. They do work and it will take approximately 1 week to get the caps to you for use on your first chemo. Its hard enough doing the chemo without having the reminder of what you're going through every time you look in the mirror!

Take really good care of yourself, get the best drugs for the nausea & other side effects and hang in there!

Ness x

Hi Annie, I've just finished four rounds of chemo (TC) and I just wanted to let you know that it wasn't as bad as I thought it would be. I was a regular at the gym before my surgery too and I think going into this as a fit and healthy person does help you get through it. I suspended my gym membership but in hindsight I wish I'd kept it going. While there have been days - usually days 2-5 after the chemo - when I was exhausted I could have continued to do some light exercise at the gym later in the three week cycle when I felt almost normal. I do keep meaning to start walking regularly but it's been so cold and wet in Melbourne where I live. As a result I have gained two kilos.  If you keep going to the gym though, you can probably avoid that. But as the others said don't worry if you can't. It's more important to be kind to yourself right now.

I had a lot of other symptoms apart from tiredness/lethargy but they were all fairly mild and usually went away after the first few days - coated mouth, inability to taste, bit of an itchy rash, slight nausea, dry eyes, thrush, difficulty sleeping at times (due to dexamethasone) and slightly feverish on day 3/4.

I guess I'm lucky in that I just do a bit of work from home for my husband's business so I haven't had to worry about a jo as such. If I was working though I think I would have had to take two or three days off in those weeks immediately after the chemo. I was in and out of bed on those days, just reading or dozing.

By far the worst thing for me has been the hair loss. The thing with that is that even when the chemo is over you still have no hair to speak of (unless you count some sparse wispy strands) and it's going to take months, years even to get back to where it was.  Ah well, we just have to make the best of it. If you can, get yourself a nice wig. It's not like having real hair but it makes going out in public a lot easier (for me anyway).

I think it's good to read all these posts and other information - you need to be aware and prepared for the what could happen but also keep in mind that most of the bad stuff probably won't happen. Just take care of yourself and let your family and friends take care of you too and you will get through this. I'm confident that life will get back to normal - it's just going to take a little while. Best of luck Annie.

Janet :)

Hi Annie, I've just finished four rounds of chemo (TC) and I just wanted to let you know that it wasn't as bad as I thought it would be. I was a regular at the gym before my surgery too and I think going into this as a fit and healthy person does help you get through it. I suspended my gym membership but in hindsight I wish I'd kept it going. While there have been days - usually days 2-5 after the chemo - when I was exhausted I could have continued to do some light exercise at the gym later in the three week cycle when I felt almost normal. I do keep meaning to start walking regularly but it's been so cold and wet in Melbourne where I live. As a result I have gained two kilos.  If you keep going to the gym though, you can probably avoid that. But as the others said don't worry if you can't. It's more important to be kind to yourself right now.

I had a lot of other symptoms apart from tiredness/lethargy but they were all fairly mild and usually went away after the first few days - coated mouth, inability to taste, bit of an itchy rash, slight nausea, dry eyes, thrush, difficulty sleeping at times (due to dexamethasone) and slightly feverish on day 3/4.

I guess I'm lucky in that I just do a bit of work from home for my husband's business so I haven't had to worry about a jo as such. If I was working though I think I would have had to take two or three days off in those weeks immediately after the chemo. I was in and out of bed on those days, just reading or dozing.

By far the worst thing for me has been the hair loss. The thing with that is that even when the chemo is over you still have no hair to speak of (unless you count some sparse wispy strands) and it's going to take months, years even to get back to where it was.  Ah well, we just have to make the best of it. If you can, get yourself a nice wig. It's not like having real hair but it makes going out in public a lot easier (for me anyway).

I think it's good to read all these posts and other information - you need to be aware and prepared for the what could happen but also keep in mind that most of the bad stuff probably won't happen. Just take care of yourself and let your family and friends take care of you too and you will get through this. I'm confident that life will get back to normal - it's just going to take a little while. Best of luck Annie.

Janet :)

Hi Annie, I've just finished four rounds of chemo (TC) and I just wanted to let you know that it wasn't as bad as I thought it would be. I was a regular at the gym before my surgery too and I think going into this as a fit and healthy person does help you get through it. I suspended my gym membership but in hindsight I wish I'd kept it going. While there have been days - usually days 2-5 after the chemo - when I was exhausted I could have continued to do some light exercise at the gym later in the three week cycle when I felt almost normal. I do keep meaning to start walking regularly but it's been so cold and wet in Melbourne where I live. As a result I have gained two kilos.  If you keep going to the gym though, you can probably avoid that. But as the others said don't worry if you can't. It's more important to be kind to yourself right now.

I had a lot of other symptoms apart from tiredness/lethargy but they were all fairly mild and usually went away after the first few days - coated mouth, inability to taste, bit of an itchy rash, slight nausea, dry eyes, thrush, difficulty sleeping at times (due to dexamethasone) and slightly feverish on day 3/4.

I guess I'm lucky in that I just do a bit of work from home for my husband's business so I haven't had to worry about a jo as such. If I was working though I think I would have had to take two or three days off in those weeks immediately after the chemo. I was in and out of bed on those days, just reading or dozing.

By far the worst thing for me has been the hair loss. The thing with that is that even when the chemo is over you still have no hair to speak of (unless you count some sparse wispy strands) and it's going to take months, years even to get back to where it was.  Ah well, we just have to make the best of it. If you can, get yourself a nice wig. It's not like having real hair but it makes going out in public a lot easier (for me anyway).

I think it's good to read all these posts and other information - you need to be aware and prepared for the what could happen but also keep in mind that most of the bad stuff probably won't happen. Just take care of yourself and let your family and friends take care of you too and you will get through this. I'm confident that life will get back to normal - it's just going to take a little while. Best of luck Annie.

Janet :)

Hi Annie, it's a varying journey for each of us, but I did manage to keep working through my chemo on slightly flexi hours, I'd time my chemo to fly up the night before and have chemo the next morning, fly home Friday night and recover over the weekend...worked well most of the time.

Hair loss was hard, I had long hair and we cut it short before the first chemo, it was all gone by the next chemo but I just made sure I bought a new hat every trip for treatment...so I had some fab styles and colours to wear to work and around the place.  It grows back.

Nausea, they have some really good drugs to help with this now...and try to have some fav foods on hand when you are home so you don't have to wait for cooking, you'll have changed your mind by the time it's ready otherwise.

I also had a tissue expander, I ended up having my other breast reduced and lifted to match my new smaller reconstructed one...took nearly 2 years because of the unexpected chemo & rads after the immediate recon but they are pretty well matched now and I've got the tattoo nipple too:)

There are lots of studies going on in regards to exercise during treatment and they are all positive so hopefully you can still get some gym in, but if not not a worry you catch up later.

Life after treatment, well I am now 10 years from diagnosis, I am different but really perhaps 10 years on I would have been anyway...I think I'm better different and I really enjoy so many things others take for granted...little things make me smile and feel good...like floating in the ocean on a summer's day ...

All the best x Sharon

Hey Annie

I agree it is both good and bad to read lots of things about what you are going to go through shortly.  I was also shitting myself big time.  After your chemo has been administered on that first day you will look back and wonder what was I so scared about.  It is very good though to read all the posts and be very prepared and informed of what you need to help with side effects and other things to get you through.

I found I could not continue to work one of my jobs as it was on a roster system and I could not commit to being able to work when they needed me to so that job has ended until I am well enough to return at this stage and if I want to return to it.  My other job I do from home I was able to continue.  I was unable to exercise as I very unlucky in that the chemo did knock me flat, mainly the Taxotere.(I have bounced back now though :-)  I have read that it is a major boost for you if you can still do any form of exercise through your chemo time.  I am now back in to walking and thoroughly enjoying it and I am very grateful I am able to do that now.

I don't believe my life will change dramatically when i return home in another week or so UNLESS I WANT IT TO.  I will go back to doing the same old things I used to do but only if I wan.  I am the same person I was before but maybe more compassionate, strong, caring and understanding and all those other wonderful things I have picked up while on this journey.  I know I will walk away from it with a new outlook on life and I will be an even better person because of it. i will have made some beautiful new friends that I cherish and my loved ones and living my life will mean so much more to me.

It is an excellent thing that you are enjoying the gym and you will go in to your chemo healthy and strong which will be a big benefit for you.

It sounds like you have a lot of love and support around you which will definitely help you get through this. 

You will deal with being sick, losing your hair and all those other horrible things we have to bear on this crappy journey and you will come out the other side like we all have I am sure, stronger and wiser.

Good luck on your journey, your pink sisters will be travelling the road with you so call on us any time you need.

LOL

Mich xoxoxo