Thank you Shi, I think this will be a valuable support group that’s for sure. Not sure when I see my oncologist for my treatment plan but should be soon I would think so I will let you know.
I am very anxious but also in denial I think!
Thank you for all of this information, really struggling to take it all in, I do feel like I have been hit by a truck! Trying to keep busy and positive though.
I will definitely keep a journal, great idea, thank you.
Any tips are welcome and you certainly sound like you have had experience and come out the other side.
Justine1970, I just used thermometer from boots that I put under my tongue, others have had the ones that go in their ear, go with what you are comfortable with ❤️ I did graph charts to track my temp for each day of chemo cycle and I also put when I’d taken meds in there too, it worked for me so I could check back on if that makes sense, you do everything your way we are all different and what you are happy, confident and comfortable with ❤️ When you know which chemo you are having and which cycles please let us know, everyone on here will offer tips and tricks and as Bernard has advised do tap into all that Breast cancer now has to offer you ❤️ Breast Cancer Now opens up a security blanket of kindness, care, help and support and so much more for everyone who reached out to it ❤️ Step by step you will get through ❤️💕💕✨✨Shi xx
Justine - and hugs from me too. I am sure you feel as if you have been hit by a truck that came out of nowhere. Do give yourself time to process what just happened and do keep in mind Shi’s positive message, especially the part about her gran. In fact it’s great for all of us to read stories like that. I also have a good friend who had triple negative BC in 2006/7 and touch wood she’s doing well.
It’s not shallow to feel upset about losing your hair - it’s part of you and a horrible side effect of the treatment. But I like Shi’s idea of turning it into a positive if you can. You might want to look into using a cold cap to help you keep at least some of your hair. I used it twice but it didn’t work for me, I think because it wasn’t the right size. Though it did mean I kept some of my hair, enough that it hung down under the scarves I bought. I only shaved it all off once chemo was over so that it could all grow back at the same rate. It’s a very personal decision.
I had chemo, followed by mastectomy and an implant, then radiotherapy so please ask if you think of any questions, any time. To answer your question about a thermometer - I used one of those that go in your ear, made by Braun. It’s important to monitor your temperature every day because chemo partly knocks out your immune system. So if your temperature rises close to 38C (your BC nurse will tell you the exact numbers and what to do) then it’s important to call your hospital and they will give you antibiotics/admit you for monitoring.
I was also advised to keep a journal each day listing how I felt. That way I would know what to expect the following cycle and would realise that bad days did pass - and it also helped me remember what to tell the oncologist at each appointment.
I don’t want to overload you at this stage. Now is the time to focus on you, taking care of your body and your mind. Lots of kindness and treats, and accept any offers of help. Do you have a friendly neighbour who could be on standby if you needed some help?
Thank you for your message, I will definitely read the book, need all the help I can at the moment, can you recommend a good thermometer? Is temperature an issue with chemo? X
Dear @justine1970, I'm sorry you're feeling this way. It is understandable to be scared.
You're in a safe space here where you can express how you feel with no judgement. There are many kind people whose support is very helpful, and if you wished to get stuff off your chest by speaking to one of our team of breast care nurses, you can do that too - on our freephone helpline on 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm), or even by posting on our Ask Our Nurses board.
Sending positive vibes your way 🌺
Justine1970 ❤️ Please keep off dr google it is 😳 and we don’t want you going into orbit, but you are probably there now after Googling tnbc. A good book that helped me was surviving triple negative breast cancer by Patricia prijatel, she is a 2 times tnbc survivor. Also robin roberts and Joan lunden who are USA tv ladies are tnbc survivors too and there are tnbc survivors on these threads too ❤️ Do donate your hair to little Princess trust they make wigs for children going through treatments. It means your hair can do good for someone else ❤️ Turns a negative into a positive ❤️ Ask your unit about a wig voucher and also the Macmillan bit at your trust usually has selection of pre loved wigs. Do discuss with your team you are on your own and see if there is any help your unit can point you that direction also do ring the number on here too they might be able to point you in direction of help with you being on your own ❤️ Please remember people do survive tnbc and breast cancer. My gran had breast cancer at age 44, she lived till she was 95 ❤️ Be kind to yourself don’t try processing everything at once, join the threads so you can step by step get by with other ❤️ And get a thermometer for chemo ❤️💕💕✨✨Shi xx
So I have had bad news I feel but maybe part good? I have been told I have triple negative breast cancer stage 3, after Googling it it seems to be the worst you can have? They have said it looks to be localised and from the ultrasound contained so no need for a further scan to see if it’s spread.
I am starting chemo in 2-3 weeks and then a mastectomy after, the chemo will be over 5 months.
To say I am scared and upset is an understatement. Also this may sound shallow but I have long, thick hair and will lose it so will need a wig. I live on my own so am panicking if I will cope with the chemo and being alone.
No idea how to process this.
@justine1970 - thinking of you today and sending strength and hugs. I’m so sorry to read that you had BC when you were 25. Easier said than done but try not to let your mind run ahead while you wait. Please do come back and let us know what they say, if you feel like it of course. Evie xx
Thank you Evie
I feel petrified, I am 51 and had breast cancer when I was 25, now I feel more out of control, I live on my own so too much alone time to think and have already written myself off.
like you say the waiting is the worst isn’t it, just feel very scared.
I will message you tomorrow with the outcome.
thank you for taking the time to reply.
@louby_lou69 - I really can’t write a better message than Shi has, everything she has written is so true, so I’ll just echo what she has written and send you a hug as you try to process it all. Try to take one day at a time, or even one hour at a time when things feel really tough. We are all here to help. Evie xx
@justine1970 - the waiting is often harder than the reality as our minds go into overdrive. But don’t worry about having a wobble or not feeling brave - the doctors and nurses know exactly how you will be feeling and will look after you. We are also here to chat any time, and will be there virtually holding your hand. Everyone on here knows that feeling all too well. Evie xx
This is an awful lot to process and you will need time. I totally understand about the work thing, that’s my life to work but I guess we should look at it as a long holiday.
If you worked from home during Covid then maybe you could do so again? Lots to think about.
Louby-lou ❤️ 👭 give yourself time to process all the information you have received today, it is a lot and you can be in the whirl wind right about now, it’s ok, we have all been there and there will be others coming up behind you too ❤️ Step by step take things one treatment at a time, join the threads where you will share with others and form unbreakable bonds on understanding with other amazing beautiful people ❤️ And always use Breast Cancer Now and all it can help and support you with ❤️ You need to concentrate on you for now and you think ahead, you will be a fabulous Mrs A for any primary school child when you’ve taken care of you first for now ❤️💕💕✨✨Shi xx
So, the good news is that the cancer has not grown or spread so still remains one tumour, and in one breast and my lymph nodes still remain clear. I'm now definitely HER2+ which complicates things further.
Because my cancer is lobular it only has a 45% chance of responding to chemo, so I'm having a lumpectomy on the 10th August with the usual sentinel node biopsy to remove the lump.
Then I will have chemo and also herceptin injections at the same time, to ensure any remaining cancer cells are dealt with.
I cried. It was a LOT of information to process. I now have to go for:
a magseed insertion
Because I'm a Primary school teacher they've advised that I forget about working at all until at least January. This has devastated me more than anything as 27 6 year olds are expecting Mrs A to greet them on the first week in September and I won't be there. I'm so sad for them.
Been thinking of you all day and hoping you are ok.
I have had my appointment through for tomorrow for my results, am now a crumbling wreck, even the phone call asking me to go in has broken me.
We can beat this cant we.
So happy for this site.
Thanks ladies, my lovely mum is coming with me. Although I know more about breast cancer, potential treatment etc than she does after reading so many posts and blogs. She’s a brilliant support though.
Having cancer is just an inconvenience 🤣 I just want to get on with my life. 💗
I will be with you tomorrow, along with all the other ladies on this site. Hopefully your plan will be put in place to enable you to move to the next phase of your treatment, wishing you lots of luck, please keep us posted to how you doing, always a lot to take in so make lots of notes and don’t be afraid to ask questions.
For me it’s always one day at a time, with a enormous big hug from me to you. Tili 🙏🌈
❤️Louby-lou ❤️ one step at a time 👭 Breast Caner Now is here for you and everyone on here is too ❤️ take note pad write questions down if you have any you want to ask and jot down answers too if you want to ❤️ 👭please let us now how you get on ❤️💕💕✨✨Shi xx
I have an appointment with my consultant tomorrow afternoon. Had my MRI last week so I’m presuming this is to find out the results and what the plan is going forward.
Im dreading it!