Thank you soo much @sunflower1972 - such great advice. I’m going to give cold cap a go too, so was thinking of taking an electric blanket maybe. I should be having a picc line but I don’t think that will happen before the first couple! Also really unfairly Aviva has declined my critical illness claim and cancelled my life insurance and income protection so I’m faced with having to work through it (because of an ultrasound to do with spotting so nothing to do with breast cancer)! Awful people!! Still will get through!!
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Ohh Emsd2025 so sorry to hear about your financial strain on top of the emotional and physical strain. The hospital and MacMillan teams have lots of information about financial support during treatment maybe get some advice from them. Good luck with it all.
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Hopefully will be ok @sunflower1972
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Hay guys
I have been reading through this feed for the past week.
So it’s coming closer my start date the 30th.
I’m having PICC fitted the 29th.
reading some good pointers and tips.
I’m going to attempt cold cap and going to have a look at videos for pointers and tips.
But my word i am soooo anxious and nervous.
I’m having 8 rounds fist 4 rounds of
Carbo/paclitaxal and pembro
and then paclitaxel weekly.
I have two young girls 4 and 10 and i’m just feeling so overwhelmed not knowing how i’m going to be for them!
If anyone is having similar have they got any advice.
I just feel so un prepared and not sure where to start.
Thankyou guys u all seem soooo loverly.
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I would challenge the critical illness claim. I had Aviva policy that was about to mature after 25 years and due to hospital delays I was 2 weeks over the maturity day with my formal diagnosis. So I challenged the decision and won. I know yours is because of a different illness but it’s always worth the challenge. You can go to the Ombudsman if Aviva still say no.
It’s not easy doing it during cancer treatment, I had only had surgery by them and hadn’t started chemo. Although I was selling the family home due to family death during the first 2 weeks of chemo.
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Thanks so much for this! I’m so pleased you won your challenge! I will definitely challenge, just waiting on a subject access request now!
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Hi @slc1 - the unknown of how you’re going to feel has been the hardest part for me as I also have young kids (7 and 11). I found the first infusion day overwhelming as just didn’t know what to expect but the nurses were wonderful. I’m on weekly infusions, lots of fatigue the first week and have found this second week harder as have had port fitted so recovering alongside that has been hard. There are definitely days where I almost feel “normal” and manage to do everything I usually would at home, bar work at the moment.
With the kiddies, I have just looked for things I can do with them that aren’t too strenuous when I’m feeling rubbish - movies/snuggles, homework and reading in bed with me, small walks to school etc. They have been loving getting to care for mummy for once but I can’t lie I’ve found it really hard and spent most of yesterday crying! My hubby just keeps repeating that my only job right now is to rest and recover.
I’m on similar drugs to you but different regimen - i’m weekly pax and 3 weekly carbo and pemb for 12 weeks followed by 4 cycles of EC and pemb.
@emsd2025 that is shocking! Hope appeals process is simple for you x
Kim x
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Morning peeps. It’s blood day for me today.
@emsd2025 I’m so sorry about your critical illness definitely appeal, it’s disgusting❤️
Welcome @slc1 sending love, my babies are 20&18 now im not surprised you’re so anxious with your little ones to look after, 4&10? They’ll be keeping you occupied for sure, did you read Kim’s post on batting the hell out of naughty boob on this thread with her kids? Really made me laugh, use their energy to take you away from all this xxx I’m a prepper, that’s how I overcome the fear, plan, pack, check… batch cook, set goals. Your immediate goal could be 1 day at a time, bath time etc, then a medium goal once a week with them and a long term goal when this is all over. (Mine is I’m going to ski with my kids again). Distract your mind and get rid of your worries on here. I’m keeping a diary too which I’m finding calming. My husband took me round the block in a walk at 10 o’clock last night bc I had a wobble and it worked xxx
Catherine @frunca huge love for today, get that shawl out, you got this xxx
@molly.m Ailsa how was your weekend? How you feeling about tomorrow?
@sunflower1972 how are you feeling now? Almost a week in? Do you feel any better?
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@story1 thank you for checking, yes I can’t believe I’m at day 6 already, it seems ages. Feeling better each day, had a lovely day yesterday as I managed to prep a cottage pie (it was a slow process but rewarding one, then later we all ate together, My son and his fiancé came over for dinner, first family meal since the chemo session.
It’s amazing to feel such achievement from the smallest things.
It helps to focus on the little positives as you said.
I also find little walks helpful, being out of the house and in nature really works for me. I’m lucky that both my sons are adults which makes this whole thing so much easier. I really feel for you guys with young ones to care for, and hope you are taking advantage of any and all offers of help. Take care everyone. X
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Hay Kim
yh i think our regines do seem very similar and sorry if incorrect but i thought i had read you have a very similar diagnosis with the TNBC.
Its just so hard i am absoultly fine when im functioning and constantly busy but as soon as im alone its hitting me like a tone of bricks. Everyone keeps saying i need to slow down but if i slow down i hit reality.
Last wednesday was a very bad day i had genetics testing and MRI and i collapsed hard and my husband had to just hold me tight and calm me as could barely breathe. But yes each day as it comes in trying my best.
And similar to you it’s not having a crystal ball to tell me how im going to react to these drugs. Also being a nurse myself i know knowledge can be power but actually im finding it a burden.
Good idea about my girls im just going to lap up movies and cuddles. My youngest is literally attached to my hip and im so worried with the germ season in full swing that im going to have to be more mindful of this.
Anyways im so sorry to rant!
Thankyou for your reply i hope your week will go good!!!
Sarah x
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Hay thankyou for your message
I am literally chucking myself into batch cooking as feel as though i’m not sure how else to prep.
and i literally said to my husband last night when this bump in my road is straight we are taking our girls to disney!! They keep seeing the advert and that is my goal now.
Walking has been key to me in the last week and has really helped so i hope to continue this when i can. I just want to know i can semi function for my babies!
The not knowing is the worst!
Thankyou for your kind words
Sarah x
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Yes I am TNBC as well so very similar! I have genetic call this afternoon which I am worried about but hoping once that is out the way there can’t be any more crap news to hear!
I’ve been so surprised how well my girls have taken it in their stride - and yes having a goal at the end is key, just haven’t decided on mine yet! Today is sunny here so managed to walk my little one to school so feel like I’ve achieved something, even if I’m now cuddled under a blanket!
Kim x
Good luck with that this afternoon.
I mean i had the blood test last week so i think i just have to wait now for the results which apparently can take up to 6 weeks.
I havnt got any family history and being only 35 i appreciate its a must just something else to navigate isn’t it!
My girls also have taken it in their stride however i havnt started yet so assuming we might face a few more emotions when i start!
and thats amazing that you took your little one to school and yes its beautiful and sunny here too! Im in the south west also.
Do u know if i could pray that i can continue to feel ok to take my babies to school i would conquer the rest! I just want to feel ok for them!
Have a good snuggle!
I had a very ugly cry on the way back from opticians earlier again i think because i was alone!
take care x
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I’m TN too and waiting for gene test to come back. Haven’t really got my head around it yet. Sounds like the treatment is pretty similar though xx There are plenty of forums and groups out there for tnbc that I’ve found helpful xx
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Hello you lovelies, lots of love to everyone on here.
I’m just finishing up my first chemo (EC) session and feel relieved to have one under my belt. The first 10 mins of the cold cap were very intense, a different kind of cold, but then i realised i had stopped thinking about it so it stayed on! I felt a bit queasy on and off.
Having my heated blanket really really helped (and my sister’s lovely shawl). The nurses said they were jealous of my heated blanket and wanted to snuggle up with me 
And Maltesters help with brain freeze. Who knew?
The port worked brilliantly. The site was still a little bruised and the doctor who put it in last Thursday said they might not want to use it for the first chemo session if it was bruised, but the nurse was happy with using it, and I only felt a tiny little pinch when the needle went in, and I felt nothing when the needle came out.
I have to inject Filgrastim starting tomorrow for seven days. I see what you guys mean when you say you went home with a portable pharmacy!
1 down, 7 to go, fortnightly
Catherine xxxx 
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Thinking of you having your phone call today. Hugs to you, Catherine xxxx
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Thanks so much and what a lovely photo!
Hi all,
Still not sure if I’m making a new post or replying when I don’t intend to, sorry!)
1st chemo today, EC-T x 4 3 weekly then Paxi? weekly for 12 wks.
Therapeutic mammoplasty few weeks ago for large pleomorphic lobular carcinoma and satellites, SNL node & 2 others, minimal cells so treated as negligible.
Relieved at first session over and sort of waiting for effects to start! Pretty tired, sipping ginger water n mints lol.
Learned lots from reading posts, wishing everyone the best x
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Hi @skye2 - you’ve done it right 
Glad you’ve got the first one under your belt - feels good to get started but the waiting on symptoms is a strange feeling for sure!
X
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Hi Kim - I’m the same treatment plan and very nervous about the whole thing.
Aviva are terrible - I’ve set up a petition please sign and share September chemo babes:
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