June 2018 Chemo Starters

[SallyG63]

Hi,

Georgie, anyone asks about your prognosis just tell them you'll live longer than them especially if they don't stop being so bloody nosey! Re the rads, as someone who has, at various times done a few sugeries, rads and chemo I'd say the rads was the easiest of the lot.

All you ladies with nail problems have my sympathy, they look really sore. Luckily for me my regime didn't affect my nails at all. I'm bad enough when I break or rip one low down on my finger

Saw my ONC today and have my letrozole to start tonight and he's doing the referral to Guys for the MonarchE trial and they will also do my Zometa infusions. He's also given me an open ended appointment to see him any time I feel the need so I just have to phone. Last couple of appointments I'd not seen him and the first thing he said was "you managed to keep most of your hair then" which hopefully means it looks better than I think it does. He asked if I managed to work all thru chemo as we'd discussed it my 1st appointment with him when I told him I'd only had chemo days off he said one word "amazing " which was a bit of a boost. Got him to check my scarring cos I seem to be getting stiffer and still can't lie comfortably or sleep on the side I had the mastectomy and node clearance. He said its fine but unfortunately I have a lot more numbness than they'd normally expect and at this stage it won't improve so I'm stuck with it.

[LJ]

Ooh they look painful. Is there a new nail growing under your thumb can you see?

LJ

[Linda Corinne]

Redrose mine were the same. 6 have come off so far and I think 2 more will. I used dark varnish and sun cream so very annoying. I stopped 3 weeks after last chemo. I cut off the bits hanging off as much as possible and am using nail strengthener now.
Linda

[Kip]

Ouch they look painful!  I wonder if mine will do that as they have that ridge bit too.  Not very useful tips from chemo unit though. 

Kip

[RedRose]

[RedRose]

[RedRose]

[RedRose]

[RedRose]

Suggestions from chemo line. Just keep doing what your doing, keeping infection risk to minimium, but how they do not say. Will continue not to wash pots etc and change plasters daily after bath. Just bloody annoying banging them all the time 🙄🤬😖. Will upload some picture to show you what I mean xx

[LJ]

RedRose, I'm starting rads on 26th November too, busy sorting out various chauffeurs to take me each day so DH doesn't have to do it all, especially with it being such a rubbish journey. 

Feel for you with your nails not being stable, must be so awkward. Hope your unit has some helpful suggestions for you. 

LJ

[Kip]

Oh Red 🌹 your poor nails, must make things difficult.  I havent got a date for rads yet am hoping tomorrow i may have some idea though.  Enjoy the circus havent been to one in years and dress shopping .. very exciting!  Enjoy it all and dont think of this crap for a while if you can!

[RedRose]

Did someone else say they were starting rads on 26th November too? Shades and cocktails 🍸 at the ready xx

[RedRose]

Hi Kip. Yeah they are actually coming off. My left hand thumb nail is holding on by a thread. Holding them all down with plasters atm. Didn’t know if to ring the line or just ask tomorrow when get zoledex injection. So awkward though, picking things up and banging them. How’s your seroma doing? I do hope it’s calming down and less uncomfortable for you. Hope all you ladies are coping the best you can, Georgie gee I can’t believe someone was that insensitive. Bless you. What treatment you have or don’t have is up to you and the same as your prognosis, it’s your business. I have had a few that want to know the ins and outs of megs ass but not through caring about me, you can tell with tone of voice and body language, they are noisy and tbh told them bare minimum. Driving myself stir crazy and having a few down days, but have things planned to actually enjoy rather than exist. Step daughters birthday 🎂 today, so circus 🎪 at the weekend if feel up to it and girly day with a friend tomorrow before hospital to look at a few dresses 👰🏼 Xx

[Kip]

Hi RedRose, sorry you've been feeling crappy again.  Hopefully you are coming through it now?  As for the nails, have they actually started lifting?   Mine never lifted but they did feel sore, like that had been hit with a hammer or slammed in a door.  I haven't lost any yet but have noticed since the end of chemo they are more brittle, so I have cut them very short and am still keeping nail polish on them to help.   I have large ridges , especially on the thumb nails, but these seem to be growing out.  I think i read somewhere on another thread that some ladies do lose nails but actually when they go they don't hurt and quickly grow back, just look a bit rubbish for a while.  Have you tried rubbin almond oil into them?  Someone suggested that to me.  I do have a friend who is 2 and a bit years down the line in this nightmare and she said her nails were fine until about a year after chemo and then went a bit rubbish so I'm still wondering if mine will go at some point?  Toenails seem ok tho.  Perhaps ring the chemo line and ask for suggestions, they must come accross it.  Otherwise, how are you doing?  

Kip

xx

[RedRose]

Hi ladies, sorry been feeling 💩 again. Just going to catch up on what I have missed now. I hope you are all doing well? Any advice for nails separating from nail beds? Fingers are so sore and think I’m going to loose at least 3 of my finger nails if not s couple more. Took them all down as short as I can but they are still so tender and keep catching them xx

[Kip]

Thanks Shi.... actually looking forward to a sunbed and a James Bond zapping... perhaps they should offer cocktails at the same time!!  Perhaps they can play "Feeling Hot Hot Hot" whist they do mine!

Kip

xx

[Shi]

Georgie gee, from my personal experiences I found rads or as we called it the 😎😎😎Sunbed lounge a breeze, I didn’t wear a bra during or after rads, I wore loose fitting kaftan type thing round the house to let skin ‘air’ drank lots of water to keep hydrated, still rested when my body told me to and slapped lots and lots of cream on to preserve skin because you do start to sizzle like a bit of 🥓🥓🥓but nothing you can’t handle. Creams lots of us used were e45, Moogoo, Aveno, dr organically aloe Vera and tea tree gel, keep in fridge and one in handbag and slap it on. They will keep close eye on your skin during rads and look after you ❤️ They can play music while you are on the bed makes it feel more like a Sunbed 👍you should have 3 little dot tattoos so they can line you up on the bed each session, think James Bond and that lazer, think we called our machine dr bap Zappa 👍👍so it was part of the team treating us 😁😁 and as for Oct health at work, mine sat there and asked me ‘has it changed you’ she got a polite smile from me and a simple yes, but you do wonder don’t you 🙄 think they mean we’ll it just kind of comes out wrong. Kip glad you’ve phoned up, don’t get fobbed off if you are not happy, just turn up at your unit, they will fit you in, it gives peace of mind if nothing else ❤️❤️❤️Keep focused all of you, you are all doing amazing that’s you too Georgie gee 👭👭👭👭have you got your big meet up arranged yet? Get one sorted it gives you all something to look forward to, is oct17 💃🏻💃🏻🕺🕺💃🏻💃🏻🤪🤪🤪gang had weekend in London 👍👍well it called for nice treat after all treatments 👍👍💕💕✨✨✨Shi xx

[Kip]

Hi All, thanks for the replies regarding the seroma.  I have called the BCN this morning and explained to her how it felt and she thinks is it a seroma but was reluctant to do anythign with it, she says they really like to give it time to reabsorb before draining it as each time they put a needle in they can introduce an infection.  It does feel slightly smaller this morning and the drain wound is not weeping anymore so we agreed to leave things be until they seem me on Thursday where they will decide whether to drain it or not.. unless it gets really painful in the meantime.  She said to keep a cushion or a rolled up pair of socks under my armpit and apply slight pressure to it and to only gently exercise that arm for 2 days, not to go mad!   So I will see what happens.

Georgie Gee - I think that was a bit insensitve for somebody to ask you what your new prognosis is!   People do come out with the most insensitive things sometimes don't they.   Ignore them!   I've never heard that rads can be worse than chemo.  I think once you've been through chemo nothing can be that bad again.  I do understand that its tiring and can cause soreness to the area, but at least you don't lose your hair, taste buds, feel sick, can't sleep..etc etc.   I guess everyone reacts differently and you will always find someone who finds it terrible, but on the whole most people have said its tiring but much easier than chemo.  Its a personal choice again though, and you have every right to not have it if thats how you feel.

Kip

xx

[Georgie Gee]

Hi Everyone, 

Kip, definitely call tomorrow.... sounds like a seroma, but let your team check it out 😘

Shi, thanks for reminding me to keep in touch; now I've 'finished' all of the chemo they can safely give me, I'm suddenly having a planning meeting for radiotherapy next Monday.  

I took a peek at a radiotherapy thread on here and I am quite reluctant to start it all, plus 2nd herceptin this Thursday.  After my first herceptin I wasn't well enough to have docetaxol the next day.  Had temp, nausea and diarrhoea.  I'm so hoping it doesn't happen again.  I feel like if I have one more side effect, I will explode! 

Even with only 75% docetaxol, I've lost all my eyebrows now.   

I was talking to an occupational health person today from work, and she told me that radiotherapy can be 'worse than chemotherapy'...... I haven't heard that anywhere else.

Then also a relative asked me over the weekend what my new 'prognosis' is, now I'm not having any more chemo.  I haven't answered, because I found the question a bit insensitive - is that wrong of me?  I just felt upset..... 

Georgie xx

[Shi]

Hi kip, ring your unit and get that checked out, sounds like something meesh had post op, just get it checked, we are all guilty of going oh i’ll Leave it a day or so but we shouldn’t it’s all about keeping safe and your teams would rather see you every day if you want than to leave things ❤️❤️❤️Keep safe otherwise the honorary gold hot pants will need sending back kip and i’ll Have to tank drive and you don’t want that 🤣😂🤣😂🤣I’m like Cher from clueless 😁😁😁💕💕✨✨✨Shi xx