Its awful not being able to sleep. Friday night I was awake will 3.30am, then Saturday spent most of the day snoozing. It’s so hard to break that cycle especially when you just feel yuk.
Hope you managed some sleep eventually Gaby.
Aley I hope you had a better weekend and that your SE’s have now calmed down.
Its pouring down here, so we’ve decided on an afternoon at the cinema. Always feels like such a treat.
have a good day all xx
GabyF - can’t remember the last time I really slept properly either...I just toss and turn...drift off to sleep then wake with a hot flush! Or freezing cold cos I have shoved all the duvet off....I now just sleep when I can and hope it will all sort itself out later! I would just love to wake up refreshed and ready for the day....
Been aching all weekend following T last Thursday.....every muscle and joint in my legs particularly....should probably go for a little walk but too tired 🤣💤
It's my left eyelashes and bits of my right eyebrow that seem to be going! Still got a few bits of hair on my head sticking out at odd angles, so yes, I'll also be a bit of a stunnner for Christmas
I've been quite lucky with Paclitaxel this week: virtually no side effects except for feeling a bit tired and breathless, so I've taken advantage and had a couple of fairly busy days - meeting friends for tea, wrapping presents, and attending a university open day with my lovely daughter. It's been nice.
I also started doing some creative writing this week, just gathering up thoughts and ideas that have been floating through my mind over the last few months, and combining these with a bit of family history which I have been dabbling with. I've really enjoyed this - something to keep my mind busy, without any particular aim. I don't know how long I will keep it up for, but for now it's something to focus on and to stave off boredom.
Aley: Sorry you've had such a rotten couple of days. I really hope you're starting to feel a bit better.
Have a lovely Sunday, everyone.
Hi A Little Pixie - each hospital might differ but on the weeks that I only have Paclitaxel, I only have steroids as part of the pre-meds on the day. I don’t have any more to take home & it does help. Every 3rd week when I have Carboplatin & Paclitaxel I still have steroids for 3 days following chemo & they are the pits.
I agree with Gaby that the SE’s of Paclitaxel are so much more manageable and honestly having it weekly makes it count down a lot quicker.
Only problem is, think we’ll have baldy eyes for Xmas. Maybe need to rock the 😎look for a while.
Kath - i’ve got a central line & it’s been such a boost. My veins were rubbish from day 1, so had to have this fitted cause they couldn’t even get a picc line in. Does make life easier.
Aley - glad to hear you’ve had your last FEC & hope the next few days are kind to you.
Enjoy the weekend everyone. Sending hugs to you all xx
Little Pixie: I have found weekly Paclitaxel quite straightforward. My SEs usually only last a couple of days and have included tiredness, slightly loose bowels, slight tingling in the mouth on day one, dry eyes and skin, hairloss, problems sleeping (but that's probably from the steroids), and just generally feeling off colour for a couple of days; also my neutrophils have crashed a couple of times, but that may have been the carbolplain and/or an accumulative effect. I've not had any nausea or vomiting, no serious aches or pains. It's really quite manageable.
About the hair: I've now lost virtually all the hair on my head - just keeping a few bits off fluff to help keep my head warm; it's cold being bald! Also lost all the hair on my legs and under my arms - nice SE that one!, eye lashes and brows have defintiively thinned as has my pubic hair (bit of an odd lokk that!). The only hair I've kep is on my forearms and I'm hoping that might still go
Hope everyone is having a reasonable week. I was up 3 hours last night, bloody steriods! Am feeling ok otherwise though, which makes a nice change.
We were told to wear nail varnish containing silicium on both hands and feet to protect the nails. We were told to continue for 6 months after treatment.
Aley - my nails have horizontal stripes & are getting really discoloured. I was also advised to wear nail varnish & keep rubbing in cutical & nail oils / creams and hope for the best.
Kath - I hope everything went well today for you. I’ve just had my 5th session of paclitaxel. Managed to get some meds from the doctor for oral thrush so let’s hope it works.
I also woke noticed yesterday that half of my right eyebrow has dissapeared, along with a chunk of eyelashes on same eye. 😉
Stay well ladies xx
Slightly obsessed with hair growth! Didn’t really worry about having it shaved off but it growing back does make me feel like there is light at the end of the tunnel! But don’t think I’ll be rushing to book the hairdressers quite yet. 🤣
I definitely have some fluff emerging and hope that the T doesn’t make it all fall out! Looked up how fast hair grows....0.35mm a day! At 1mm every 3 days....a centimetre by Christmas...🤣🤞🎉
Hi Everyone. Hope you’re all doing ok.
A Little Pixie - I do hope you get switched to weekly treatments soon. I was so worried when they said i’d Have to start weekly paclitaxel, but to be honest it’s so much more manageable than 3 weekly FEC and the SE’s are not as severe. I’ve had some rib pain but nothing like you describe. Sending you a big hug xx
Today i’ve been to have my blood tests for genetic test - will have results in 3 weeks. If it’s positive, i’ll join a drug trial for women with BRACA gene & TNBC. It’ll be 12 months on either a real drug or a placebo, but it’s peace of mind knowing they’ll be keeping an eye on me when chemo is finished.
Now I need to pysche myself up for going back to work for few hours tomorrow. It’s getting so busy in run up to Christmas & am feeling guilty that i’m leaving everything to my OH. Xx
Hi Everyone. Hope you’re all doing ok.
A Little Pixie - I do hope they get you switched to weekly Paclitaxel. I was so worried when I was told they wanted me to switch to weekly treatments, but to be honest it’s been much more manageable than 3 weekly FEC. I’ve had some pain in my ribs but nothing like what you’re describing. Sending a big hug xx
Today was my blood tests for BRACA testing. Now just got to wait 3 weeks for results. If it’s a positive, i’ll join a drug trial at the end of my chemo for 12 months. It’s for those with a genetic link & TNBC. I won’t know if i’m on a real drug or a placebo, but it’s extra peace of mind that they’ll be keeping a close eye on me.
Am now going to psyche myself up for going into work for few hours tomorrow to help my OH. It’s getting so busy on run up to Christmas and i’m feeling guilty that i’m at home all day.
Had a new SE last night - felt very dizzy most of the night and when I first got up Had a long, hot shower, breakfast and then staggered into hospital for bloods etc. They checked me out, but everything seems as normal, so it's just another of those unexpected & unpleasant things, lovely!
LittlePixie: so glad they've identified what the problem is. Paclitaxel is not too bad at all (it's the carboplatin that gets me), so hopefully you should start to feel better very soon
Met a former colleague this afternoon for a tea. She had Hodgkin's Lymphoma years ago and has been clear of that dreadful cancer for years. It was so good to see someone with a great positive story. We have to keep reminding ourselves that we will get through this and live a happy, healthy and long life!