Hi Jan, 

I'm sorry to hear about the confusion with hospitals, covid has made it extra difficult for us. My treatment has been over 3 hospitals, as my local one where I had chemo didn't want to do the opp due to covid so I was sent to a private hospital to have opp on 01 Apr. They are trying to protect cancer patients as much as possible. My radiotherapy is in the next town as my local hospital doesn't do radiotherapy, so I'll be travelling every day too. 

I live in a small sea side town and a few friends were worried if I was getting the best treatment and maybe I should go to london to a major cancer hospital. However all was fine for chemo, you have a multi disciplinary team that look after all your treatments and well being. You don't always see what's going on as they have these meetings without you knowing and then you find out once decisions made and confirmed. I do know the treatment received and chemo drugs are the latest for triple negative and same treatment ladies all over the world are receiving. So that did make me feel better that it doesn't matter where you are they'll make sure you have access to the latest. 

Sorry if I'm rambling, hope it makes sense. 

I also had the scan, biopsies and marker put in. I had my chemo first as I had 4/5 tumours and largest was 53mm so they didn't want to wait and do the opp first as they wanted to shrink tumours, it was also in my lymph nodes. 

I had to go for quite a few a scans so after diagnosis my chemo started 5 weeks later. It's not easy waiting ans you'll find that's what we all struggle with is the waiting game and keeping yourself busy. 

Have you been assigned a macmillan breast care nurse that you can filter all the questions to?

I also blamed myself for getting cancer and convinced it was because I had stopped running and therefore not exercising as much. You'll find with TN that majority of us are younger and actually quite healthy. They don't know why we get it that's why there is always so much research out into the treatment. 

I also convinced myself it's because I eat too many choc digestives haha! I know our minds do crazy things. 

Now I find anything I search has potential li ks to cancer, its so annoying! At the end I'd the day when your daughters treatment is finished s she needs to do what is right for her and what she feels happy with. With her CF I would imagine she already has a healthy diet and looks after herself. My husband gets annoyed with me at times if I read all these things to much on the latest way to live your life. 

Hugs xc

Ha ha the hair is hilarious, err not! Yeah I'm all fluffy and sprouting peach fuzz every where! I'm fair skin and always had a bit of downy face but now I'm like a bunny rabbit! I read online about derma blading or something like that with an eyebrow blade. Too scared to try anything like that as I'm so clumsy so ended up trimming facial hair with scissors! Yes it was that long. Just hope I don't get a beard now

Oh and my hair has come back all grey! Yay me. 

Hey Davia, 

Ah thanks for the advice, I'll keep it up when walking. I do my stretches still not all of them but just to keep it supple and moving. It is amazing when you have lift your arm straight up. There was one point that I thought my arm would never go back. I can still feel the cording but only in my arm pitt now. 

I have a feeling I may get lymphadema as I am prone to water retention esp when flying, my ankels swell up for days even if I do the exercises on board. Hey don't have to worry about that at the mo. 

But I'll keep walking and doing a bit each time so keep me motivated. Just annoying everyone else is out n about now so makes it harder lol! 

Btw are you doing anything particular to get rid of the seroma? 

Xx

Hi Jan, 

You're welcome. OK so early days still, I know it doesn't feel like it but I found the first few weeks a lot of letters, phone calls and all sorts going on. Once you get the final confirmation of treatment plans etc you'll both feel better. 

When I was diagnosed, I came home with a handful of brochures and told to read them. Felt like I came back from a travel agent booking a holiday! 

Moat if the info is all online now and the brochures were from breast cancer now. They have dedicated pages to diagnosis, treatments etc. 

Have they said specifics on her lump? 

I'm only a B cup so by the time I had noticed it, it was a mass and then got a bruise as it was putting pressure against my breast. The buggers! I have dense breasts so probably why I couldn't feel it sooner. 

It does annoy me that routine mammograms are only for 50+ when your daughter half that age has it. Thank goodness for all these charities creating awareness. 

What would you like to know about TN. The forum is a sounding board for anyone to chat, you can also send specific messages to nurses etc. For specific info in tnbc you would go onto the main cancer research page. Yeah I read all those too! 

Us ladies decided once we finished our treatment we are going to create a TNBC warriors thread for all us survivors to offer support. As you'll find once people finish treatment and get on with their lives they don't tend to come back, so u just assume the worse.

Aww thank you Jan, your daughter is lucky to have you with her, no doubt you are her rock and vice versa

Xx

Hi Jan

When I was diagnosed on Nov 8th I met my oncologist 2 weeks later who said my 1st chemo would be dec 14th, I went Into a panic thinking my lump would double in size but she reassured me it wouldn't as it takes months for a lump to grow so its noticeable to feel. The bit in between being diagnosed and getting a plan is a strange time I found, the 4th of June will be here before you know it but know we are here if you need to talk. 

Hugs 

Linda x

If Sacha is on fb there is a great triple negative group which is private with ladies of all ages from 20s n upwards, I have found it a godsend as some have been clear 10 years + it's called triple negative breast cancer uk and ireland (tnbc) support.

Hi Jan

Sorry forgot to say about the hospital, as long as you are both happy with what has been planned. If not, let them know. And ask loads of questions, in the beginning I felt silly asking questions about things that seemed mundane but often these are the niggly ones. I got a note book and documented my progress from diagnosis date etc. I write in it every week about what I've done, feeling, appointments coming up etc. I find it keeps me grounded and any excuse to write and doddle with gel pens

Hi Mich 

I phoned BCN and mentioned it to her, she said unless the seroma gets very uncomfortable best to let it find it's own way!! I do the excersize when I remember in the day, I always have my arm stretching above my head lol and if I put my right hand under my left armpit and close arm on it, it disperses the fluid, when I put cream on I wipe from left to right, and I do under boob area to tummy, I found a you tube video on lymph drainage after BC it helps. If you find your arm and hand keep swelling up, ask if it's possible to see a lymphodema nurse, they are really good, my sister is still under one, she wears an arm sleeve if she travels by air, and some days she will wear it if the arm feels heavy, she sent me one of her spare arm sleeves, we're the same size, and if I'm gardening I put it on, it sort of rests the arm, I went for a walk with it on to and the arm didn't feel so heavy. The BCN just said keep doing excersize as they help drainage, I try and do them twice a day but I do forget some days

Have a good weekend, hope you manage a nice walk, it's not to hot so should be nice. 

Keep well xxx

Linda I didn't know about that fb page, thanks for mentioning it. I've just requested to join.

x

That's great Claire, I hope you find it as helpful as I do, I am lucy luu on there as years ago i and a couple of colleagues had patients relatives trying to add us through work so we used nick names x