Thanks. Please can I ask how are you managing not working- mental stimulation etc I’m torn between not being up to working, only get 3 months sick pay and not being able to not work (climbing the walls needing to be engaged with something) I’m hoping to work 2weeks of the 3 week cycle but possibly being overly optimistic. Arhh! The unknown! It’s so different for everyone isn’t it!
I have only just stopped working last week so it’s very early days but I have been doing sudoku and reading so far. I thought I might try and do some work when it gets to the 3 week cycles but not sure if that will fit in with my new role so we’ll wait and see. I am lucky my firm have insurance cover to pay for people‘s salaries when they are off long term for up to 2 years.
Meant to say oat milk rather than almond milk in smoothie as it’s creamier, but it’s a matter of taste. Hair has just started falling out in handfuls this morning for the first time - 14 days on from first AC. Scary! Second chemo this afternoon. xx
up to 2 years is amazing, I’m pleased for you. I must admit I am looking forward to catching up with the books I’ve been meaning to read! I’ve just been given Sarina Weigman’s book too. -looks good.
Hope your 2nd goes ok. I’ve just had an appointment at the same hospital I will be starting chemo so went to look in. I feel like I’ve got a better idea now. The nurse said you do start loosing hair pretty quickly with EC. I’ve got my wig appointment next week, I was going to just have wraps and hats but think I will have a wig as an option at least. What’s your plan?
I’ll need to have a look at that one
Glad you got a look around. It does help.
2nd chemo went well and feel ok so far! Have managed to eat something. . I ordered a wig online from Simply Wigs and it arrived this morning. Looks good but my hairdresser, who’s a wig cutting specialist said that synthetic wigs do need cutting to take some weight out of the top them. I couldn’t get an appt with her until 6 Dec. She was going to shave head at same time. Not sure I can last until then. Will see how much hair comes out tomorrow!
I do have an NHS voucher but need to travel a bit to use that. Might do that though. Apparently I can put some more towards it if I want a better wig. Spoke to a woman at hospital today who has one and hers didn’t need cutting! She got an appointment within a couple of days and came out wearing it. Showed me a photo. Looked good.
I’ve also ordered some hats from Anna Bandana. Basic hat in various colours and lots of different twisted bands to go around them. Thought I would need them to wear at home.
Good luck with whatever you decide to do. xx
Hi, well after receiving a letter on return from our holiday the last 8 weeks I have been a bit of a shocker! I have been biopsied, diagnosed - 1 6mm lump HER2 + and I 9 mm lump HER3 negative , one each side. Luckily not spread to lymph nodes I had Hodgkin’s disease 30 years ago and so a lumpectomy and radiotherapy was out of the question. Bilateral mastectomy it was, yesterday I had my first chemo treatment, what a whirlwind it’s been… No sleep now for 2 days due to the steroids, one day to go!! Trying the cold capping, decided it may not make a difference but can try… all went well, now for a gentle wash to get the conditioner out… This morning I feel very headachy and big sicky but porridge is down! Being able to read your journeys is so encouraging and helpful, thank you, not a club I want to be in but we can do this… stay strong everyone and be kind to yourself…
Is anyone else finding they are coping with the big stuff fairly well but being tipped over by small things?
Told I need chemo - ok I can do this!
Told I had an appointment with a physiotherapist turned out to be an occupational therapist (equally professional-probably better clinician for what I needed) sent me into a spin and a crying mess!!
Ah this journey!!?! Little -not what I’m expecting blips have suddenly turned into huge boulders in the road!!
Ive just had my 3rd Paclitaxol and seem to be fine.
Had my hair cut really short as hair was falling out a lot faster. My BN said paclitaxil is well tolerated, so hoping for very little side effects. Hope you are the same. Get my next herceptin injection on Wednesday, not looking forward to that 1 as stings like mad. Lets hope we can all get through this and get back to some kind of normal x
I’ve just had my 2nd paclitaxel, doing ok so far. A few stomach issues and a bit tired but not too bad
Been losing small amounts of hair, they said I will probably see a difference this week. Have decided to get it cut very short as soon as that happens
We will get through all this together, it’s so nice to be able to chat to other people on this journey
I don’t want to gate crash, as I have just been given my starting with EC on 5th December, but I’d just like to ask about when and how long for, should I expect to feel inhuman afterwards. Is my partner expecting too much that I will be able to attend his works Christmas do on the 8th? My understanding is day 3 is the worst.
Thank you x
I think everyone is different and depends what drug you are getting
With my limited experience so far i have learned not to plan anything
Hope it goes well for you on 5th
Hi,Kitty3 I had my port fitted in the morning and then went straight to my 1st chemo session. Hope all goes well for you.
Hi sunshine I ended up getting my port fitted on the Wednesday they left the needle in place then I had my first chemo on the Friday.
The port seems to work really well
So glad your port is in place. Good luck for all your chemo sessions. Thinking of you. Take care.
I think you should check with your team and take their advise about attending, your immune system will be compromised with chemo so always go on advice from your team Shi xx
I’m having EC I start on the 30th. Happy to update you how I feel 3 days later with the caveat I’m picking up that everyone responds differently which isn’t terribly helpful!! Sorry. I hate going on how I feel! Feelings to me are so unreliable. As a single mum if I didn’t go to work every time I’m tired I’d most certainly be unemployed right now, but this is where we find ourselves! I do hope it goes well for you. I’m still planning events but ensuring I have a get out if needed (insurance for tickets etc) I hope your partner would understand if you say yes but then can’t face it. I’ve read day 10-14 are our most vulnerable days in terms of immune system/most at risk of infection.
all the very best with your treatment.
Thank you both. I’ve just had a chat with my visiting sister in law. Her daughter went through this a few months after she had her 2nd child during covid. She told me that the last few days before the next treatment were bearable for her daughter, so I’m not holding out much hope. Also immunity gets progressively worse with each cycle.
Check with your team when your nadir phase in chemo cycle is likely to be and make an informed decision to attend Christmas do or not everything is your choice you can receive guidance from your team but choices on what you do are still yours Shi xx