@lumpybyebye such wise words! Definitely having that rug pulled feeling right now, I know I’m a tough cookie but the thought I’ve my kids watching me go through chemo breaks my heart, I worry more about them more than anything but will try my best to explain to my youngest without it being too much as he’s only 7 xx
This group is amazing support already x
@rbf that looks lovely!!
@emilyxxx , I totally get that - my daughter is 4 (4 today! - luckily at a good part of the cycle so can enjoy the day with her!!) and it has really added another difficult dynamic to this crapfest. She’s old enough to see that things are different and has been quite anxious when I was poorly after 1st infusion, but not old enough to fully understand, I also found it really emotional worrying about how she will cope.
I just reassure her all the time that the yucky medicine makes me poorly for a bit, but it’s not forever and I’m still always ready for a cuddle! I also tell her she can talk to me whenever she feels worried and so far she’s doing well.
It feels impossible to navigate I know, but these kids are resilient, I think they just need to feel safe and loved, and we will get through it 
🩷
@lumpybyebye with regard to loo issues, my chemo nurse gave me Laxido powders. I’m only on day 2, but one a night has been perfect and avoided the awful constipation/diarrhoea cycle the previous meds caused…so far! It might be worth a chat at your next treatment day x
Good tip - I’m going to ask about that when I’m back in for cycle 2 on Wednesday as I also had those loo issues last time!! 
@rbf ah happy birthday to your daughter! They are very very resilient arnt they I’m sure mine will be fine I have grown up children too that help out with my youngest so are a huge support in that way, although my eldest is going travelling for six weeks right when treatment is starting I’ve told her to go live her best life and enjoy it as I know when I got diagnosed she was worried about going bless her x
It’s great having people to chat to on here x
It’s so strange how different trusts work. I’ve been begging for the injections every cycle as I’ve ended up in hospital twice with neurtropenia. At my lowest admission, my WBC were 0.2 and presented low temperature and aura. Although that symptom has now triggered a brain scan this Sunday. My trust kept telling me i don’t get the injections because they expect my wbc to drop, but then I look at others who automatically get them…I find the whole thing baffling and frustrating. I’ve also been told I’ll stop herceptin between now and surgery, which is a recently new thing. You used to carry on between. Hoping it’s not a money saving exercise.
I’ve got consultant on Monday before second chemo and think over the weekend I’m going to go through the cha and write down the list of things I want prescribed 
he’s going to love me!
I read somewhere to walk into the consultant appointments as if you’re chairing a board meeting - I think someone put it on a chat on here and that’s stuck with me - I’m even going in my work clothes to look the part 
just a way to entertain myself really!
Has anyone been told they can’t run with a PICC line? I only do 5k and haven’t really felt like it this past two weeks anyway but the fact that the nurse told me I can’t run has made me want to even more especially for my mental health side!
Morning folks!
Juts remember we’ve all got this!!!
My biggest worry was my girls who are 4 and 10 and they have been amazing!
My oldest does get very cross with my youngest in regards to germs and washing her hands so that’s our daily battle! 
But reassurance like @rbf said the yucky medicine will make mummy a little poorly for the time being but better after.
and i feel it’s juts about realising the days you won’t be be able to do much but they days you can you get out and do fun stuff!
Weirdly after having started cycle 2 Wednesday yesturday i was flooded with just feeling urgh!
which hasn’t been the pattern from the first three weeks of chemo! so that threw me abit! It appears my worst day up until now is day three!
But Hay this shit i suppose likes to keep us on our toes!!
Bring on the Accrofils starting again tonight 
wooooo!
@cass2 i appreciate they expect ur WBC to drop but my word two admission because of it surely they need to reconsider and offer the injections each time!
Happy friday everyone 
@cass2 wow, that’s pulled me up short for moaning about the injections…I had no idea some trusts don’t give them, thats terrible!
I think you’ve just given me what I needed to reframe the injections, so I’ll feel fortune to have them instead of moaning!
I’m so sorry you’re going through this with neutropenia, I’m really shocked about your situation. I hope your next cycle is better x
@Loupy Morning, nobody’s s told me I can’t run (I started in the summer holiday whilst the hospital was trying to decide if I had a 3rd tumor). I just reached 5K last week. I’ll text my nurse now and let you know 
@cass2 that’s just so wrong! Surely it costs so much more with the extra hospital time, than it would giving you the injections. I’m really sorry. @dilly I agree, I’ll now focus on feeling lucky to be getting the injection x
Oh my gosh you ladies!!
The power of sharing!
@lumpybyebye 
told me here that her employer was adding SSP onto her half pay. This prompted me to email my office manager after being told I’d just be going onto half pay from this month. I just heard back from central HR that I am getting SSP on top of half pay until SSP replaces my half pay!!
@dilly I spoke to MacMillan last week and they have referred me to get some financial advice. They were really helpful. Unfortunately I don’t get SSP as I started a new contract in September, glad you sorted out your SSP as you should get SSP on top of half pay from when I was researching it.
I’ve had to apply for the new ESA and send off my SSP1 form, got a phone appointment with DWP a week Monday. I am also going to apply for PIP as it’s been 6 months since my diagnosis. I’m getting help filling in the form.
Definitely recommend ringing MacMillian for financial support.
I’m baffled about how different trusts are so different in the provision, these injections, wigs etc etc… shouldn’t be a postcode lottery!
May I ask for those who have done a cycle, when will I start to feel like I’m going down hill after infusion? I’m going to keep a diary like some of you have suggested for symptoms etc so I can manage them better for cycle 2 (in 3 weeks time) 
Thank you for all your support
@tigress42 with my first cycle my rubbish days were 2 to 9. But I’m on day 3 of cycle 2 and side effects are better (so far!) but more wiped out by fatigue. Yesterday afternoon I couldnt even flick through a magazine (although I’d had a shower, done a load of washing and some sewing in the morning). Today I’m still not up, but that’s ok.
I should say from day 10 I felt more and more normal until quite chipper, all ready for cycle 2!
hi - I havent posted on here before, read lots of threads for support. I am actually a July chemo starter - currently in the middle of chemo - have completed 5/8 - switched to EC last time after docotaxel - its floored me.
I just wanted to reply to @tigress42 re the injections. I take them for 8 days - from day 3 to 10 after chemo. we have a routine now… my husband gets a freezer block and applies it (with a little too much enthusiasm!) to a roll of my stomach… then I inject - if my skin is frozen then can’t feel the injection! hope this helps x
Sorry, I didn’t mean to upset anyone. I just find it strange how different trusts work and it makes building trust with the professionals very difficult when they’re reasoning isn’t consistent across the country. It makes you wonder what else they’re holding back on. I suppose this is why getting a second opinion is useful.
Dont worry @cass2 you didnt upset me, youve helped me cope better with my injections x
My first cycle went a bit like this:
Day 1-3: felt pretty much fine in myself, but quite tired as had terrible insomnia (steroids!)
Day 4: started to feel a bit ropey, queasy and wiped out
Day 5-7: felt awful!!! Crushing bone pain, appetite gone off, terrible headache, diarrhoea … All the fun stuff 
Day 8: turned a corner and felt a bit better
Day 9: felt pretty normal and went back into work
I’m Day 16 now and feel basically fine. My energy levels are maybe not as good as normal but I’m otherwise ok. I’m working my normal 11 hour shifts, doing 11k + steps a day etc, eating fine , all good 
I start cycle 2 next Wednesday
I’m the same as @dilly, you haven’t upset me. I just think it’s unfair. But then there is a postcode lottery on all public services I guess.
It will help me with my mindset for tomorrow. I’ll let my husband know about your tip @jolou with the freezer pack.
I’m starting a crochet project today, heard that keeping fingers active can help with neuropathy.
Thank you so much for listening, and your support
