@kerrylou1@donna_51@alig1961 you guys are amazing and thank you so much for your words of wisdom today. You can tell I am in a fug and your support is so appreciated.
I’m seeing my oncologist on Monday before the next cycle so I’ll talk through the options again.
Another scan this Friday to see if the ****** has shrunk some more and talk through with the surgeon about surgery next month.
@donna_51 lab rat is such a good description - we all going through our own personal turmoil and finding a way through it. Waving not drowning? What amazing women we are We will so definitely get there. BTW how was the meet up with the friends?
Hey @kerrylou1 I have done the 12 paclitaxel and I’m wondering if that’s why I am finding AC so much harder as it’s cumulative and hence why I should take a 3 week cycle rather than two to help my body. Who knows
Yes cold capped all the way through. Please do continue if you can as I managed to keep my hair. Waiting for the shed now on AC - will keep you posted.
I’ll be here for everyone during the next stage as you’ve been here for me xxx
Ah thanks for the reply and yes please do. I’m about due for my 4th placitaxel now of 12 with minimal side effects so dreading the EC which should start in October all being well.
Waving not drowning… I love that ! Hard to know the difference some days but it does sum it up!
Ahhh my lovely friends!!! I’d resigned myself to accepting that they just weren’t the friends I thought they were and they were now in a different category etc… and we had a nice few hours catching up. BUT then they moved on to talking about how my diagnosis was traumatic for them because I was the first friend in their circle that had cancer!!! Unbelievable… bloody selfish cows That clinched it really… friendship changed forever.
As for EC … yep, it’s grim, like it all is really but you can do it team … we’ve got this! We’re women, we’re strong… let’s kick cancer up the arse (no matter what treatment plan we have)!!!
@donna_51 Well at least you know you can kick them into touch now without a second thought. How unbelievably selfish they are Did you say anything? - like ’ how unbelievably selfish you all are?’
Well… there’s one good thing about friends….you can choose them, unlike family. Take a break from them. When you’re the other side of all this you can re think if you want.
Xxxx
Hi all … thanks for the advice about the steroids … seems like it’s just something I’m going to have to suck it up!!
I have been so crap last three days following my chemo … first one that’s really knocked me for six afterwards… I didn’t even get dressed! My leg muscles just seemed to have stopped working could barely walk and the tingling and aching sensations in my feet and hands have been awful nausea also seems quite bad this time and the tablets not helping … all in all just feeling very very sorry for myself!! Ended up calling the chemo helpline I was that concerned … they didn’t think it was anything too alarming… just side effects from having the new chemo … not sure if that reassured me tbh But managed to get an hour in the park today so grateful for that!!
Reading through all posts … crazy to think how far we have all come already … like my partner said last night one more then I’m half way through
@charlie22 I’m sorry to hear you’ve been feeling so grotty. It will get better. Don’t worry about doing nothing and staying in your pj’s - you’re allowed to! Make sure you tell them about the nausea as there’s lots they can tweak to help you. Are you taking all the antisickness tablets you are allowed?
I am totally stunned this evening by an example of joined up working between departments in the NHS. I was given Lanzoprazole for heartburn following one of my treatments. I just went online to order my regular tablets from the GP and there is Lanzoprazole, on my repeat prescription list I didn’t request it but somehow it’s gone on there. That makes me ridiculously happy. Pathetic I know
Thanks @pat … I have an appointment with the oncologist on Tuesday so I’ll go through it all with him. Weirdly the new anti sickness tablets are the ones that don’t seem to agree … I feel like I’m having a panic attack after I take them … luckily I have some of my old ones left, although the take the edge off they aren’t fully effective.
Legs have been terrible again this evening … I’m hoping they can either prescribe something stronger to take edge off (paracetamol/ ibuprofen and codine are definitely not enough) or look at the dosage of my chemo … as for for me 3 days house bound and barely walking is not practical with a toddler
Super news about your teams joining up … I would also take that as a positive win
Hope everyone has nice things planned in this week? I’m hoping for a little seaside trip on Tuesday and tomorrow out with my mum, sister & aunt and kids to a farm and to a fab place near us called Billy Bobs (American diner/ ice cream) for dinner … although got my mum to drive as I don’t trust my legs and hands still! But a nice start to the week hopefully xx
@charlie22 I really hope it all settles down for you… it’s hard when the side effects don’t seem to be under control. Definitely talk to your team about it as much as you can.
As for being in your PJ’s … I didn’t actually have a shower for 3 days last week, just couldn’t be arsed to get out of bed. I stank but I didn’t care and almost dared my family to say anything to me !!! Do whatever you need to do to get through it xx
Seaside trip sounds lovely… enjoy every bit of that as much as you can. I have the joy of watching my hubby and boys go kayaking and doing Go Ape this week. Something I’d always have joined in with before … at least the dog gets to stay with me so I might just get a big cake and eat it alongside the river as they sweat past me !!! And give the dog a treat too.
@donna_51 … I didn’t shower either I genuinely felt disgusting
Yeah I need to write it all up in my diary tonight … does anyone else log their side effects on each day? Helps me feel a bit in control plus I always forget when I’m on my actual appointments what I want to say so this time I’m going prepared!
Aww that sounds like they are going to have a fun time … I’ve never done kayaking but done Go Ape a few times … it’s crap isn’t it not joining in … I’m definitely an active mum and feel like I’m really letting them down (I know I’m not deep down) but those feelings are hard to shake!
What cake??? I’m into all cakes … so couldn’t specify a favourite at the moment although have had a hankering for a really good Victoria sponge lately… I might see if my mum will make me one!!
@charlie22 CAKE !!! I keep changing my mind… I love a victoria sponge but I saw someone with a banofee pie on tv last night and now I have a desire for that. Not sure it will work walking along the canal though, ha ha… need a dainty macaroon that can be eaten in one bite (but technically not a cake in my view - a cake needs to be HUGE!!!) xx
I made a chart so I can log everything. I love a spreadsheet. I think it’s the teacher in me . I couldn’t get on with the little green book as there were just so many different sections.
I log the date, what cycle it is, what my bowel movement has been, my temperature, my side effects, what extra medication took and when and anything else that may or may not have helped. There’s no way I’d remember everything over three weeks and it’s valuable in the onc meetings. I have my telephone consult today and I am really going to try to push for extra/stronger anti sickness meds and better indigestion meds. I’m also going to mention anxiety sickness as I think I’ve had three episodes of thinking myself sick.
Good luck with your meeting @charlie22.
@charlie22 I hope you feel a bit better today and that your trips this week go well. for your appointment as well.
@alig1961 my hubby has made me a spreadsheet to keep track of the various tablets etc. I’m diabetic so I need to keep track of my blood sugars too which are thrown out of whack by the steroids I’m aso writing down side effects and have found it quite useful to look back and see that they aren’t as bad as they were the first time!! Hope your phone consult goes ok. Write everything down beforehand!!
@donna_51 any cake will do!! I’ve become partial to a bit of victoria sponge recently, which I probably wouldn’t have chosen before, too boring. I’ve arranged to meet some friends for coffee on Friday. They’ve told me to choose the venue and the place I’m going to choose is solely on the basis of the blueberry and lemon sponge I had there last time.
My online order has arrived - loads of fruit that now needs washing (that can wait), but I’m more exited about a fruit loaf that I will toast and have with a lot of butter.
What has happened to us? I feel constantly sick, tired, hungry and stomach feels it’s been turned inside out. Also so much makes me feel even worse. I have a long list of food I can’t eat (or drink) including apples, water and apple juice (I get them on the chemo suite so anything connected with that including egg sandwiches and rice pudding leaves me wanting to )
Proud of myself today - I showered and washed my hair. Not sure how much is falling out. I tried not to look.
I started a log on the first chemo regime, but never kept it up as side effects weren’t that bad. Now I wouldn’t know where to start!
Here’s to another week being ticked off and lots of cake being eaten. My Fitbit has given up on me as has the dog.
@jbb … you have added fruit loaf to my list of wants!!! What has happened to us… I have gone off so much food, fruit in particular tastes odd but have real cravings for random stuff like pot noodles and now CAKE and fruit loaf. I am totally susceptable to any advert or suggestion clearly !!!
On another note, I’ve just had my first counselling session with the free Macmillan sessions. OMG - how much did we cover in 45 minutes? How I was feeling now, impact on me now and ongoing, friendships, how I feel about myself/my future and more. The counsellor was brilliant and I feel like it’s going to really help - even though I only have 3 more sessions. If anyone interested you just refer yourself… see link below xx
I’ve just finished my 4th EC yaaaaay! Onto paclitaxel and hopefully it treats me better! I actually had to be prescribed lorazepam which is an anti-anxiety medicine because my brain is associating various things as chemo sickness and making me nauseous for no reason! Grrrr… bad brain!
@donna_51 Glad to hear you started some counselling, I’ve been on one since my diagnosis as work provides them and I found it really useful to say my thoughts to an uninvolved third party!
@alig1961 Sorry to hear nausea and stomach issues are still plaguing you There’s just so many combination of drugs to tackle those and it takes a while to find the right combination. Doesn’t help that it’s a double whammy of acid reflux also contributing to the nausea. Sending you lots of hugs!
Just had my phone consult and they’re using my omeprazole from 20mg to 40mg. How much did you have @smt ? They won’t reduce my EC dosage, I think that may be because I’m triple negative but they have prescribed lorazepam for anxiety sickness. Thank you for sharing your med info @smt it really helped me to have that knowledge. Let’s hope cycle 3 isn’t as bad as cycle 2. Bloods tomorrow and last EC Wednesday. Xxx
We will so definitely get there. BTW how was the meet up with the friends?
That clinched it really… friendship changed forever.
Did you say anything? - like ’ how unbelievably selfish you all are?’ 
nausea also seems quite bad this time and the tablets not helping … all in all just feeling very very sorry for myself!! Ended up calling the chemo helpline I was that concerned … they didn’t think it was anything too alarming… just side effects from having the new chemo … not sure if that reassured me tbh 
xx
I didn’t request it but somehow it’s gone on there. That makes me ridiculously happy. Pathetic I know 
But a nice start to the week hopefully 
xx
for your appointment as well.
)
There’s just so many combination of drugs to tackle those and it takes a while to find the right combination. Doesn’t help that it’s a double whammy of acid reflux also contributing to the nausea. Sending you lots of hugs!