I’ve got 5 more to do the taxel and carb has really pushed me over the edge I had a reaction too and I want to keep the 100% dose and get it all in
i now have a blood clot on my lung and my breathing is so bad ! On daily injections which have bruised me so badly
my body is wrecked! This is just the start I know and yes we will fight it all the way Yes I’m scared too I remember the oncologist saying this was the hardest bit She wasn’t wrong 😂
I’ve got surgeon on 27th to review everything so nervous but can’t wait to get it cut out ( oh that’s sounds brave but I’m really scared of an operation)
good luck and keep going xxx
Sue, your experience sounds like mine and loved your post i am finally on my 11th session out of 12.
i am on the same 2 chemos and am totally floored. I am sick of being in bed but have no energy to stay up for long. I am coming to the end of my chemo my last one will be this Wednesday however they didnt give me my carboplatin last week only got my taxo as i have been taking alergic reactions that seems to get worse each week. But having tnbc im scared not to get them. Hopefully i will get it on my last session this week.
the next couple weeks are appointments leading up to my surgery. Scared of my mamo and ultrasound results but as the consultant said last week she couldnt feel any lumps now i feel a little positive.
its been the toughest and hardest 4 months of my life so far. But have to keep going to get rid of this horrid disease.
nearly the first stage over now and can get onto to get my surgery then 3 weeks of radiotherapy. 1 step at a time is how i try and deal with it.
I’m so glad I checked in. Almost everything you said, Sue, ties in with my own experience from the sod-it bald head to the can-I-get-to-the-end-of-the-road approach to fresh air. Just remember, you are facing a very tough chemo regime - 3 ECs almost broke me, ended up attached to drips for 4 days with neutropoenic sepsis! Then 9 paclitaxels, during which I had my one-driver, 4 cars written off crash and an undiagnosed fractured sternum!! Happy days. So I understand completely how both of you feel, including ‘really must investigate YouTube’ - it’s always something to be done tomorrow. It’s not too late. I’m off to do my daily stint in a minute.
Wishing you both well. The reward of that glorious puppy-soft regrowth is immeasurable - you’re both fortunate to have little ones around you to offer their wisdom. I just have a cat that bolts when I enter a room! As regards the impact on your husband, cruel though this may sound, he has to sort out his own feelings. You have too much on your plate right now. Don’t get me wrong. Not a day passes without my feeling immense sadness at how my breast cancer has affected and almost broken my husband but I now understand that it’s not me who has caused the distress, it’s the disease, so the guilt has mostly passed. And help is out there. My husband just chooses to ignore it (and I’ve set him up twice with good opportunities - as soon as there’s a whiff of my illness, that’s it, shut down, not going back!).
Take good care of yourselves. YouTube calls me,
You are doing so well and just keep doing what you’re doing. My niece lily is 3 and she stroked my head the other day and said ohh bum fluff 😂 and the next thing she is asking for her hair to be cut just like auntie Charlie! They are the world. When you started the taxel is that when you felt that you couldn’t walk etc ? I’m only asking as I’m starting that weekly for 12 weeks soon. Also there is a really nice site for hats and scarfs called Machimo they are a bit pricy but the hats don’t make your head boil and sweat x
I love this response and I agree with it all, I’m not doing so well at the things have changed and doing not mindfulness stuff, so I’m going to look at the you tube you recommend here x
Thanks for check in hope you are doing ok
Ive done 4 EC they say I tolerated it well ME not so sure two A&E days and caught Covid ! Never felt so unwell in my life ! One of the visits I had a bad headache so they did a CT scan only to find a suspicious bleed in my brain so MRIs regularly now They are monitoring it. They say it’s new and are unsure it’s linked to cancer ( myself I think it’s linked to Covid but who knows ?) at least they are watching it my oncologist said they would never of looked so I guess I’m lucky. You know my first thoughts Brain Mets ? I do worry it will spread but it is what it is and I will have to deal with it
Can’t drive now have given up my business as I worked with2-4 year olds and they are lovely germ spreaders! I live in a village so it’s very isolating sometimes
Started Taxel and Carb on 30th Dec it totally floored me I aged twenty years in a week!
The bone and chest pains are crippling ended up back in A&E again! As I couldn’t breathe All checked out and given morphine for the pain which I must say is rather nice 😂 and I have some for home now
Friends have already fallen along the way strange you learn who real friends are ?
I can’t drive walk around the block or up my local shop on my own as I’m sure I will pass out. I even had my husband get me out of the bath as I couldn’t do it I was a fit active person now I’m a weak hermit !
But I take one day at a time When I saw this notification I thought I’m going to reply as I woke today without a pain I went to bed with
Tuesday 3rd Taxel chemo hoping to not have those injections I will fill my bag with my salty snacks and munch the morning away I hate the odd taste in my mouth The hardest for me is keeping my weight on and I’m not a sweet tooth person
I’ve stayed off the negative google as I want to fight this I look like Uncle Fester which now I laugh at the loss of my hair is almost a nothing ! And when the boob goes that won’t be a loss either
I have a new grand baby due in May probably around my surgery time but I want to hold it feed it play and be normal !
My two and half year old granddaughter has kept me sane ! She is like she’s been here before and she just knows ❤️ she’s very knowing and my daughter and I have been in tears over her little actions or words we don’t know how she knows what she does She stroked my head scarf the other day as if it was hair while looking a photo of us She knew it was different but she said it’s growing grandma I will probably end up with my childhood curls again just like her hair The best thing is She still sees me as Grandma not a cancer victim and that what I find hard with other people. I hate being looked at with pity!
I feel I’ve destroyed my husband but we are strong together and will get through this. I hate seeing the sadness in his eyes when I’m really bad he try’s to hide it .
so Tuesday number 3 of 12 meaning 9 to go ! Single figures This is my weekly countdown
Yes I’m still scared and every day lately is a challenge I’m not the lady that started this journey I’m very different in such a short time which I find odd !
I wear my head scarves a lot and wore my wig on Christmas Day, I look in the mirror and don’t see me now it’s a new me ! With the wig I think it’s for everyone else so I will wear when I want and not for others ( well maybe my grandsons as my son still can’t tell them I’m ill 🤷♀️ they are 10 and 6 but sensitive boys and don’t live near us)
sending you a huge hug for thinking of me and I hope things are going well your advice was brilliant Oh and finally I may one day punch someone if they say ‘you are strong you are positive’ hate these words because One ☝️ I have to be strong to fight daily I have no choice it’s what anyone would do Two I have to be positive I want to live! I don’t need people saying it over and over again No one knows how they will cope but if you want to live you DO and we will all do it differently! Good days and bad days happened before TNBC hit me and I will continue to do so
How’s it going, Bigsue? Thinking of you xx
I can’t thank you enough for your reply
i will follow your advice as it all makes so much sense. Amazing a stranger can know what to say at the right time.
I wasn’t going to post anything and this morning reading this I’m so glad I did
it is a group no one ever wants to be part of. But I am part of it and I need to change my life to get through this. I just don’t feel it’s me at the moment but I think old me has got to grow and be the new me ! .
THANK YOU X 🥰
I’m so sorry you find yourself in this position. It is scary, no doubt about that, but much is fear of the unknown and that will soon be ‘known’ so you can let go of that. The language in Cancerworld seems designed to exacerbate anxiety. Triple Negative IS aggressive and can be fast-moving or unpredictable but the fact is, once you’ve begun chemo, things will settle down. I belong to a Stage 3/4 Triple Negative group and there are people there who were declared NED (NO Evidence of Disease) decades ago.
I personally think the real problem lies with TN’s public image - and most of that lies in the last century! Things have moved on, there are new treatments, lots of ongoing research, new organisations/charities dedicated to this particular condition which accounts for about 10-15% of all breast cancers.
My advice is
1. Do NOT Google. Anything you want to know should be asked of your team (not always easy), forums like this and the excellent nurses’ helpline (number above, top right)
2. Learn to trust your team. There is an extensive multi-disciplinary team behind the scenes and decisions about treatment lie there, not just in your oncologist’s head. Find out who’s in your team.
3. Try to forge a good relationship with your breast care nurse (or team, as is policy in some hospitals)
4. Build up your resilience. I’m afraid there will be times when you cannot be in control - that’s where trusting your team comes in - but you can feel better about it by being resilient. This is the time to practise meditation, mindfulness, yoga, baking, running - whatever helps you feel strong. I have used Progressive Hypnosis’s videos on YouTube almost daily for 4 years now! This kind of thing will help slow you down, stop that explosive feeling and help you gain a new perspective.
5. Don’t be sucked into the ‘You got this, girl’, ‘Stay positive’ mindset unless this is you. There is evidence that a positive mindset can help with recovery rates but there is zero evidence that it cures cancer. If you feel crap, feel crap; if you are too tired to do something, don’t do it. The world is not going to end, you’re not weak, you are not letting the side down. You are being wise, listening to your body and doing what is best for you.
6. Decide how much you need to know. You may be someone who believes knowledge is power and wants to ask questions about everything but remember, once heard, it cannot be unheard - so choose your questions wisely. Or you may choose to play ostrich, like me. I just let them get on with it. Don’t pay any heed to the 20th C tropes around TNBC. Things have moved on. I have Stage 4 (metastatic) TNBC and I am on the same first line treatment I started 19 months ago. According to Google, I should have been dead long ago. Times have changed, treatments have changed and we are human beings, not statistics.
7. Don’t expect life to be ‘normal’. Things have changed now and you need to adapt to them, rather than resist. They talk of establishing a ‘new normal’ and that is different for everyone. Don’t get angry with yourself for falling short of your expectations, You are in a different place now.
8. Surround yourself with a network of friends and people willing to help you because there will be times when you need this. I found members of my book group emailing me and asking to be put on my personal taxi list! But remember, not everyone will prove supportive. They may keep telling you you look well when you feel sh*t, they may act like nothing significant is happening while, for you, this is a major life change… discard baggage!
Sorry this is so long. I’m always wordy but I’ve enjoyed thinking back. Hopefully, other people will give you the practical advice. Mine is - as soon as you’ve read this, go to Youtube and try a progressive hypnosis video. I wish you an easy ride and the best outcome
It’s been a 4 week roller coaster ride
I found Lump just before my 60th Birthday, GO referee me and sent me on holiday the next day. I watched my breast change in the two weeks away and the pain was hell. I knew it wasn’t good so tried to have a great holiday. Returned on a Sunday then referral was on Monday. Mammogram and scan then 3 biopsies as they found large suspicious areas! 2 week wait and confirmed Triple Negative BC
CT Scan MRI and Pet Scan they confirmed it’s only in right breast !
Chemo mastectomy and radiotherapy!
So many tests ! Bloods etc checking I’m not pregnant 😂 Covid jab flu jab ! Phone calls appointments it’s mind blowing !
Im due to start chemotherapy in the next couple of weeks and have every two weeks for 4 sessions then weekly for another 4 weeks once kidney checks are done. They say I’m top of list as it’s aggressive and fast growing
Any advice ? I’m trying to be organized and positive I need to be in control of my life the best I can that’s my coping mechanism!
I have cut out caffeine, wine, HRT I’m a healthy eater so trying to keep that going. I’ve got wig booked, brought caps/ hats even post surgery bras.
I’m scared stupid if I’m honest everything has moved so quick which is great but my mind is exploding!