February 2017 Starters

Maria … it’s so awful I know … I was the same …even the lead thing I’m sure I wrote that in here …
They said about patches next time il tell you when I know more …
Have you got naproxen? That knocks you out so you can sleep and have me and hour after of slight peace From SEs …
The gcsf injections also are rough so when they stop that will ease . Or If you had the big shot it will ease in 2 days … I found eating crap like KFC and subway sandwiches - weetabix and brown sugar , Pitta bread and houmous … grapefruit juice diluted for different taste as water tasted vile .
I just ate what I fancied , keep eating little and often … also prunes or something as try not to get constipatied because ondazatron will do that … and then your me in AE with a nice man surgeon wiping cream off to inspect your bum bum ?
Also my downstairs is now coming out in clumps so he got a load of them too …, god The embarrassment is excruciating ?
Maria I want to help you …, can I offer anymore help ? Ask anything please or just moan and moan … it’s so awful and we understand and you need to vent it babes xx

Maria, I strongly recommend that diary! You can write everything down daily, how you’re feeling, what you’ve taken, eaten, achieved (because you WILL achieve stuff)
It will enable you to plan next cycle. Once you know what to expect, you can plan! It gives you a bit of control back. You will get in to a routine with the cycles. You’ll know what days you’ll start to feel better.
However, if you’re feeling really ill, I’d suggest phoning your emergency contact no. for further advice. Dont ever worry about bothering them. How’s your temperature? Do you monitor it? I felt the first cycle was the worst as I just couldn’t comprehend what my body was telling me, going from being very healthy, never off sick to having cancer & chemo!
Awful thing to say but you’ll get in a groove. And before you know it you’ll be half way then it’s all downhill from there.

Zena. You have my total admiration. Can’t imagine your pain/embarrassment right now!

Jojo xx

Hi zena im having the gcsf for next 7 days was originally 5 but its been changed, then only 3 days till chemo review then 2 days after chemo .dont feel like there be a good week …no sleep tonight as steriods have me wide awake , which isnt helping the nausea think if it werent for that id wouldnt feel so bad one thing i stand is feeling sick …never realised gaviscon was so vile neither lol xx

Jojo like you ive never been off sick , could always work through anything i got hit with but this is so different .my plan is bed straight to bed after chemo in future …instead of waiting for side effects to kick in …doing my temp about 4 times aday .it went up a little past my normal earlier but not enough to warrent there phone call .steriods have kept me awake all night which means i have to constantly deal with the nausea feeling . Past two days have already started to take its toll on my son .feel like a crap mum right now aswell x

Hi ladies,

Sorry to butt in on your thread. Having read Maria’s struggle on another thread and seeing how others struggle…

Having a diary to record your symptoms, side effects, temperature, etc. is very helpful.

Should any of you struggle with nausea or diarrhea for more than a day or two - you really ought to contact your chemo team or helpline. It is very important that this is addressed quickly. Don’t despair too much - your anti sickness medication can be adjusted for the next time. hence the diary is a very good idea.

Please do not take any additional medications, which have not been approved/ checked as ok by your treatment team. They could be contraindicative to your chemo regime.

Steroids - as you come off them, you might find that you ‘crash’ - so be aware and be kind to yourself.

I have gone through 6 x FEC and am now 4 1/2 months past my last one. For some, the first chemo is very challenging, whilst others struggle more further down the line. Chemo affects everyone in a different way due to type of regime, age and underlying health challenges.

Please call the chemo helpline or your treatment team, if anything at all is amiss - that is what they are there for. Do not wait and see, whether it goes away or gets better - your body will, through chemo - nor react and work the way it usually does.

Hugs

Sue x

Maria .
Call gp if you can and get some nozinan it will help you sleep and relieve nausea for a bit or equivalent as per my antiemetic post on page 12 or 13 now on here I think.
I was where you are …so so so so so awful , ?debilitating and exhausting too … to feel sick all the time is one of the worst things and very exhausting even with sleep.
I was bathing a lot so I could relax . As I was up all night too.
I’m sorry you feel it’s affecting your son , I know as my 10 yr old looks worried at me sometimes. It’s unfair for them to go through this , but also unfair on us. The only thing we can do is get better for them. I know that sounds patronising but it’s true.
I’m wondering why so close together for the chemo ? I guess to hit it hard …so this does mean the cancer is getting a real bashing especially if you feel so awful the cancer will be feeling worse so that’s good??.
You are being an incredibly brace lady and this hell is for a really good reason and it won’t be forever I promise, mine did ease and I was very bad too .
Keep going and fighting xxxxx

Thank you zena , what where you recommended for constipation, only been couple of days which tbh is normal for me im not an everyday girl ?? though thinking it may ease my stomach a little x

Thanks sue , only tomorrow left for steroids and anti sickness tabs , hoping stopping them will ease things , fingers crossed x

I stopped my Ondansetron as soon as nausea stopped as they are constipating. Kept on the full course of Dex tho. I reckon once you stop taking tablets & let your system reboot you’ll feel better. Aloe vera juice is good though!

Jojoxx

Thanks jojo , might get some aloe vera juice , just want a good day so i can go home .my poor mum is doing everything from going to shops and finding lifts to feed my cats , worried about the toll its going to take on her x

Maria I have pmd you xxx

Jojo is right though I felt much better when stopped the drugs even anti sick ones - However I did start nozinan but that was for sleep and anti sickness…and it was what I needed after 5 days of pure hell tbh xx

Jules could you repeat Facebook page stuff as Maria trying to locate it … I’m rubbish at Facebook so totally forgot how xx

Jojo, Maria and Zena I hope you are all feeling better very soon. Sending loads of healing vibes and hugs your way. You are all amazing xx

Bless you jojo . A uti on top ? just for fun eh … what a proper horrible thing chemo is … let’s hope it’s doing the thing it’s supposed to you amazing girlies xxx

Hi Moijan

 

thanks for the info. They did time the Neulasta so it was at least 24 hours after chemo. I had the chemo on Thursday morning and the neulasta on Friday lunchtime. I might ask about having it the day after this time and see if it makes a bit of difference re side effects overall though.

 

Tessa

Interesting article thank you.
Made me realise again how lucky we are to have our nhs. Can you imagine having to barter with insurance companies to fund your treatment?

Has anyone who’s injecting themselves had an ooze from injection site? Like when I’m pushing down on the plunger & withdraw, a little bit of the liquid comes back out. Not sure how important that one little drop is!

Happy Saturday folks
Jojoxx

Interesting article and does make you realise about our nhs , im having 7 days of flistagram , no blood tests till 3 days after i finish , i wonder if you can end up having too many injections .hats of to you jojo ive opted to let the nurse do mine as im way too worried about doing them myself .Its much better for me not to see the needle xx

Hi Tessa, Mojo and Maria, thank you. Yes I was told that sometimes the gcsf can work too well in boosting our cells…the onc scrurinises mine,

 

i think it could be reduced if the cells got too flush!  

 

Re self injections…

Yes, I realise the self injections are/can be very off putting. 

I never thought id be able to do them! However, I got a dvt from capecitabine and have now been self injecting In the tummy for about three years!  The blood thinner leaves little lumps which one has to try and avoid injecting into …but they go away after a while.  

 

The GCSF doesnt leave lumps and doesnt hurt.  I have three daily injections after each Eribulin.

 

re the fluid coming back out of the injection site…this frequently happens and I dont think it matters…obviously we lose a Tiny  fraction of the dose…its more likely to happen if the needle isnt quite in to the hilt. You could discuss it with your onc or nurse.

 

hugs, moijanxxx???

Reference injections, if they keep infections at bay then all good .my head been very heavy tonight , but seemed to clear abit with eating , decided to try dominoes think its been only thing that ive managed to taste since chemo …doing reg temperature checks as have dry sore throat but then im in a warm house all day xx