Evening!
Scotty - glad to hear my onc isn’t the only one using a ruler hahaha! My thoughts were the same as yours… he measured it at 7cm but the MRI I’d had 2 days before showed 8.5cm so there is a fair difference in the tech and the manual methods!!
I’ve been using my daughter’s Frozen ruler to measure at home and think it might be 6cm now - we’ll find out Thurs!
I also have to ask for results - I’m Literally sat there, heart in my mouth, asking what my latest scan shows and they never seem to be forthcoming with the info. I also seem to find out most info getting cc’d in the odd letter from the onc or surgeons to my GP.
Sometimes I think it is such a routine, daily thing for them that they forget how out of the ordinary and serious it is for us…
Enjoy the rest of your wknds - I’m making the most of liking wine again before the next chemo xxx
Evening all. I’m glad we’re allowed a moan on here about medical staff! I found out at clinic meeting last Monday that the reason my first chemo nearly didn’t go ahead was because the onc had forgotten to tell them she had consented me. Luckily I had my consent form with me. But I had half an hour of stress while they sorted it out and then a three hour wait for chemo drugs to be sent from pharmacy. Also asked on Monday why I didn’t need herceptin when path report said her2+. Told it was a typo and should say her2-. Bit worrying! Moan over (for now ). Hope we all get good night’s sleeps. R x
Crikey Robin. Bit of a difference between her+ and _. Seems sloppy.
So I’m not the only one with a ruler wielding onc! Presumed it was because they used up all the budget on the posh anti-sickness meds and g-csf jabs! Well your daughters Frozen one is a step up from my old wooden school one. Going to raid sons room now to look for a ruler. But how do you measure it??!!
Wow - that is a critical typo Robin!!
Just before my port op, the nurse gave me a document to sign saying that I was pregnant!! I’m not - they had ticked the wrong box ?
Scotty - I’m kind of pinching where the lump is between my thumb and index finger and looking in the mirror at the same time as there is a sort of border of skin/fat so I can take a best guess at where my fingers have managed to pinch to. It’s a pretty crude way of measuring but I’m becoming a little obsessed ? I’m going to take notes when the onc does it this week! Good luck!!
i started treatment last week and decided not to use the cold cap. I was told if your hair is too think it wouldn’t work…and I hate having a cold head!
Im hoping to get a range of wigs to rival Beyoncé ?.
I have heard of others who have tried and their hair thinned but didn’t fall out though.
Im new to this and was looking for help regarding bloating. Is this the correct place?
I was diagnosed at Christmas and started chemo on last Monday ( TCHP) It’s day 6 and my tastebuds have gone, I have piles and my tummy is bloated with a horrible red sore throat. Apperently, this is the good times and my crash is yet to take place.
Morning All
Robin - can’t believe that typo. That is not only bad it’s quite dangerous. it changes your whole treatment plan and is worrying for you.
Thankyou for the help with heartburn etc. I am going to try to get some omeprazole from the team Egg and the scotch pancakes sound good and bland!!
Beedot had to drag myself out to party. Felt tired and rough yesterday really out of sorts. At 4pm I wasn’t going. Then I thought of something easy to wear
Decided to have a shower and see how I felt and went in the end. But was very nervous about wig, it felt like a hat. Everyone said it was lovely but I felt really self conscious. Anyway even had a dance as did my OH which is another good thing. It got him out too mixing and chatting. So all in all good move. And I slept until now!
Morning all.
Mooney glad you got out.
Had a bad nights sleep.
Had the sweats again but much more disturbing were the dreams.
Most nights I’m up 2 or 3 times to pee, old lady syndrome, but each time I fell asleep I dreamed about losing my hair.
I genuinely didn’t think it was a big deal.
I’m quite happily telling all and sundry it’s my hair or my life.
I’ve had a pixie cut from quite long hair, and the dreams were all about pulling out handfuls of long hair and trying to decide if it was time to shave it.
My hair is falling now so I’m obviously more bothered than I care to admit.
It seems more important than losing my breast.
We’re off out for lunch today so I’m going to try one of my wig
Sorry for the rant.
It seems so silly when I write it down.
Have a great day everyone.
Morning all. Welcome Jonsey, Ebim and all other newbies. Good luck to anyone starting this week. Soon it wil be the Feb group being the starters and we’ll all be old hands. Well done Mooney on getting out to party. Don’t think I could just yet. Totally sympathise about the hair thing Jackie. Never realised how much I loved my hair till this! Have a good Sunday everyone. Thanks for typo sympathy too. Yes it doesn’t exactly help when they do things like that! R x
About to start again on 7 days of g=csf jabs. Haven’t missed this bit at all. I daren’t ask Mooney but have you got the same bunged up issues as last time?!
Morning all
Hair is a big thing. I thought i was coping well, buying wigs in advance, recognising when it was coming out, taking it down to 3. But this final bit when it all comes out i hate it. I am now practically bald. I didn’t realise the huge impact it has on your self image and I must say it was the thing I hated about last night. I loved my hair, it was lovely and more importantly mine. Last night was strange everyone was very nice and saying how lovely I looked but… I was ill at ease, this artificial thing that I am not to sure about stuck on my head. But unless I am going to hide myself away I have to go out and last night was right for me. I was among friends (mostly).But I don’t think people understand the huge effort it takes to expose yourself in a situation like that. I kept thinking the wig was going to come off and I didn’t feel like me.
Thanks for the thought Scotty! No more bunged up issues. Took cosmicol and lactulose day before chemo and 1 cosmicol every day after, and now every other day! Done the trick. Ah the things that please us.
Welcome to those just joining us, it’s a lovely supportive group. If one of us is down there is always someone to commiserate with, make you laugh, share an experience.
Thankyou everyone!
Love and Hugs Mooneyxx
Morning all - crikey re typo that would have me in a real tizzy u seem like u r handling it really well robin much respect! Agree with others that it seems sometimes the teams forget we hang on every comment/body language etc re consultations but its every day for them. I noticed a discrepancy in my schedule (only 14 days between cycle 3 and 4) and when i queried it they were oh yeh thats wrong we will get another date arranged. Did make me wonder what safeguards are in place to stop that happening! Luckily my team have been great so far. I get all clinic letters automatically sent to me, don’t even have to ask.
Re hair - yep the nearer its getting I’ve realised how
much ive been kidding myself that its fine its only hair etc! My youngest is petrified but trying to be so brave about it for me it breaks my heart. Tingles have started and my armpit hair(minimal as it was!) completly shed over yesterday. So i guess i need to wait and see this week if the cold cap has had any
effect. Lump in arm pit remains painful and not any smaller so will definitely be ringing bcn tomorrow.
Final note - feel like having a glass of wine tonight but not sure if to chance the open bottle in the fridge from 3 weeks ago - any thoughts! ? new problem for me as normally consumed within a few days!! Warm hugs to all xx
Most people seem to start shedding from day 16. Certainly was the case for me. Started coming out in clumps on day 16 so I shaved down to a grade 3 and then a 1. Be prepared! I probably could have left it a bit longer but for me it was about taking a little bit of control back but it’s a very presonal decision. Good luck!
Robin and Jackie - I had the same with mri - typo said lump in other breast then summary said not. I queried it and it was corrected. I have a load of questions for my onc team this week so hoping I will see the consultant. At first appointment I just sat back and nodded and went with the flow. But now having done more reading have things I want to ask.
Robin and Jackie, that’s so fundamental getting your notes wrong! You definitely should get them to write the correct information to you.
Lighthouse - I would go for a new bottle of wine as its a treat and use the open one for cooking.
I finally snapped this afternoon. Before I started chemo I bought some natural deodorant which is supposed to be better for us. Well, since my chemo, I have had a heightened sense of smell and I have been busily washing all my jumpers etc - all those delicate hand wash items- straight in the washing machine. I wasn’t doing anything more strenuous than watching the tennis highlights this afternoon and and I suddenly got overwhelmed. I can no longer stand it, I don’t want to smell like a yak herder! I am back to normal antiperspirant, is that bad?
I feel the same about deodorant, I never feel quite fresh no matter how many baths or showers I take and am forever handwashing jumpers after a brief wear even when they have had t-shirts or shirts under. Anyone else found an effective aluminium free deodorant? Or are you all just using your normal one? I think its compunded for me by very tentative underarm shaving as am wary of SNB scar on one side.
I have tried Dr Organic pomegranate deodorant. It smells really nice. The problem I have is applying it as my armpit is still numb from my nodal clearance and the little sensation I have makes me feel a bit yucky!
Ebim - I hadn’t done yoga before I started my cancer journey! The class I go to is at the Penny Brohn Cancer centre near to Bristol so is targeted at people living with cancer and also for supporters of people living with cancer. My daughter and I had been saying for ages we wanted to do yoga but hadn’t found anything local and then this happened and we are lucky enough to have Penny Brohn close enough to go to the weekly class.
Beedot I use Bionsen non aluminium roll on deodorant . It’s blue packaging and can be found in all chemists and some supermarkets. I’ve been using it for ten years ever since I had dcis and a mastectomy. R x
Lindieloo im a day behind u next fec is the 7th feb unless they change anything as Neutrophils were down. Head hair still hanging in there today - tingles continue tho. I have a wig but really really not sure if i can do it, but its not styled yet so maybe… Beedot ive gone for a new bottle! And taste buds are enjoying so far! Re deodorant ive stayed with my usual but also remain numb on surgery side so never quite tell if i have the spray right!!
