Newly diagnosed and learning
Comments
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Hi Lillian
so sorry you've joined us the waiting is so hard the not knowing is scary.. but we are all here to support you I did not know what grade or stage till after surgery try not to think to far ahead 1 day at a time thinking of you
Pam xx0 -
So sorry to hear your diagnosis. I recieved mine just under a month ago, now I'm home recovering from a mastectomy. It all happens so quickly. I'm 39 and also have a 1 and 4 year old, so I understand your fear. I'm still waiting for my stage and grade, which I will find out on Thursday. It's all so much to take in, but once your treatment starts you begin to feel coragous. You will surprise yourself. You can do this. Try to focus on one thing at a time and cuddle your beautiful kids extra hard. Let others help you and talk to whomever you can. There is a lot of knowledge, comfort and inspiration here.2
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Welcome Lillian, Just want to send you and yours big hugs and positive vibes for strength. You'll get through this and your lovelies will help you. Please know that whenever you feel down, fed up, scared, in need of reassurance we are all here as your cheersquad. Xx Cath0
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Thank you for your replies.
I have been reading and reading - all the information sent to me, your posts, some library books, then spending time with my girls
Thank you for the advice about keeping organised. I had already spent my December spring cleaning and bought a wall calendar (I already have the pink@Unicornkisses), diary and all that and had my year full of lots of adventures as it is my daughters last year before she starts big school. I guess in a way I am lucky that I'm already organised a bit, most of our adventures were planned around local stuff as we don't have the money to travel far, so depending how Im coping we can probably do some of them.
I already have a crap memory so 'chemo brain' should be just great
I have booked in to get my hair chopped off next week and taking my girls along with me. I have always had long hair so I thought it best to take a step first and let them see so they don't get so shocked.
Thank you for the advice about a thermos! I love my tea and am very picky about how it is made and I would never have thought of taking one.
I have started looking at etsy for scarves and such - although I sew myself, I have a room full of unfinished projects and this time its probably best to buy.
Which leads to the next question - I also knit and crochet - is this something I could do whilst getting chemo at the hospital?
My husband is coming with me for the first round and I know everyone reacts different so will see how I go but after that I have told him I would actually like to go alone. Everyone has said take a chemo buddy, but I rarely get time to myself that I don't mind just having a quiet sit.
I know Im in that quiet before the storm though and no matter how much I prepare it will still be unexpectedly rough.3 -
Here is something for you to check out. It is free and you"ll find it a most precious time. Take care xx
http://www.otisfoundation.org.au/
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Thanks @iserbrown, my breast care nurse told about this too. Once I get my schedule I will see where there is a window (if it exists) and get away with the family. Im blown away by the support out there.0
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You're welcome. We're all in this together and we'll do our best to help you through. I had 6 nights at an Otis retreat and found it so helpful.
lgfb.org.au
Look good feel better another offering for us all
Take care xx0 -
I am sure you could knit and crochet during chemo and then you could have some hats ready for the cold weather. Really with scarves if you just buy one (or a hat you like) well you might be able to make ones that actually go with your clothes using it as a template. With cold weather I wore a bamboo wig liner as the wind whistled through the little holes.
Sounds like you are keeping busy. 0 -
Hi Lillian, I haven't logged on for a while but saw your post tonight. I was diagnosed last April at 39, gone through 6 months of chemo and now in my last 2 weeks of radiotherapy. I'm now 40 and also have 2 little girls, 3 and 1. I highly recommend you to contact Mummy's Wish (a charity that looks after cancer mums with kids under 12). They helped me to apply for Special Child Care Benefit which means that my girls get in-home care while I'm going through treatments. My older one was in daycare and younger one was only 5.5 months so didn't have a spot in daycare, I had to pull the older one out of daycare anyway because I kept getting sick from her while undergoing chemo (very immune suppressed) and for a period of time my chemo had to be delayed because I had infections (nothing serious but when going through chemo we had to go to ED if we get a fever over 38 degrees). Having a nanny that looks after my kids at home is the best solution for me, there were times I physically couldn't look after them so it's good to have someone there in case you are not feeling well. I hope you go through your treatments smoothly.
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Oooh...another knitter! I take an "entertainment" bag with me containing my kindle as well as some knitting. Great conversation starter, as I usually get asked what I'm making. I also take along items from my dreaded pile of items which need sewing up. I hate the sewing up and buttons part, and being stuck in the chemo section keeps me honest. I feel so much happier afterwards, knowing that I've now finished 100% something that has been put off.
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Hi Lillian67 and everyone. I too am just starting out on my journey and am identifying with everything being said. I received confirmation on my birthday and it has been a total whirlwind since. I have had my surgery and had a couple of lesions removed - HER2+, ER+, one grade 2 and one grade 3, no cancer in the lymph node they removed (yay). I have my scans next week and they are going to insert a Portacath - I have sucky little veins so this is probably a good move.
It is reassuring to read everyone's posts and to know we are all in this together1 -
The portacath is a sensible option, Sparkles. A couple of weeks and you will forget it is there. That doesn't mean I won't be delighted to get rid of mine ☺0
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I think its a great idea and honestly I would have gotten it but never had the option. From friends also with BC they were Her2+ they had portacaths because after chemo they had 12 months of herceptin. I was ER+ only and had 5.5 months 12 infusions through canulas some weeks were tough. Hugs xo0
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Thank you @Tingy for the info about Mummy's Wish, will definitely be getting in touch with them.
I've started on a cuddle blanket for my girls @Ally Jay so great to know I can take this along
and yes I have been reading about ports and going to ask my oncologist about that.
I thought I was off to see the oncologist last Friday but their office called to organise a cardiograph and luckily I wanted to confirm the appointment and they told me next friday! I had a little meltdown as in my head I was planned out and it just threw me. Instead Im using the extra week to get more prepared. Im holding onto my hair for another week and hubby and I are going away for the night to 'let our hair down' without the kids. I'll go get it chopped off next week.
I went in and saw my GP and got a GP Care Plan and off to see a dietician and sports physiologist. My Breast Care Nurse put me onto a great Catalyst episode about Cancer and exercise and if nothing else it will give me something positive to focus on while the doctors do their thing.
As I am having chemo first before the mastectomy I am feeling very anxious about time passing and giving cancer a chance to grow and spread more. It's sitting like a heaviness on my chest. It's becoming quite uncomfortable and I have some swelling. The lump is almost half my breast.0 -
Hi Lillian67, like everyone here I am sorry to hear about your diagnosis. I am relatively new to the group also and have found this site and the ladies on it a great source of information and comfort. I was diagnosed with an aggressive stage 3 BC that has spread to 1 lymph node just prior to Christmas. I started 12 weeks of AC Chemo ( 3 weekly ) on the 5th Jan. My tumour was 5cm and was also hard and sore, after the 1st round of treatment my breast softened and the soreness has gone completely, making my oncologist very happy and me of course. I have had a port inserted and it is a lot easier having treatment with it although there is initially a bit of minor discomfort, bruising etc but it only lasts a little while. My chemo treatment will run over 6 months AC first for 12 weeks ( halfway through already ) then 12 weeks ( weekly ) of Taxol and Herceptin which will go for 12 months. Surgery in whatever form will be in there somewhere and then radiation. I try to just focus on one treatment at a time and not get too overwhelmed by the whole process as it is overwhelming and scary. all treatments vary depending on many factors so I have tried not to get too bogged down with ' Dr Google ' ( best advice my specialist gave me ) . I tried cold caps initially to maybe save my hair, they didn't really work for me so on Australia Day my husband shaved my head. I had a cry when my hair started to thin as I was hopeful that I may save it, but at the end of the day it wasn't worth the extra stress. I have a couple of great hats, a wig and some rouched bamboo caps, I figure winter is also coming so there'll be some really nice winter hats and beanies around.
I really trust in the treatment that I am receiving and the Drs that I have taking care of me and although this is a really crap thing to have to go through I know that I'll get through, just 15 months of a 'different normal '. Getting to a place of accepting the 'different normal' has taken a few tears, some anger and a lot of understanding and support from my husband, family and all those that care.
know that we are all here and as Melclarity said when I first joined we all ' get it ' whatever it is your feeling or facing.
Kat x
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