Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

@frostyfingers hang on in there. Keep drinking plenty and just survive from hour to hour. You will get through! I found listening to Chopin nocturnes or Irish fiddle music the only bearable activity on those days. Sending strength from your invisible army.

@frostyfingers hope you’re doing ok today. Sending love.

the drain has gone! Hoorah! Saw surgeon today and he’s happy with how things are going.

but I’m so happy the drain has gone. Freedom!

Thanks all, finally feeling better today, just weak. I did have a reduced dose of 80% I think they said so I'll just mention how awful I felt in my next call & see what they say.

Hope the sun is still shining wherever you are, it's a glorious day here and it makes such a difference to go outside and feel real, actual warm sun!

@ememem84 thats brilliant! It’s so great to have it gone - my picc is out which feels fab too. Just a heads up that I had an unexpected issue post drain removal. About three days afterwards I went for a walk and the movement must have opened it up, releasing built up fluid behind. I did produce a lot of drain fluid however. I had taken my crescent cushion with me and that soaked up the rather big leak. Once I was home and washed it didn’t do it again but was a bit of a kick when I finally felt free of it.

@frostyfingers good call to talk to team. I think they dropped me to 70, which did preturb me a little about the impact on cancer lurkers. They also gave me aprepitant, ondansetron and metroclopramide which I layered in at stages around chemo.

@frostyfingers the sun has been shining here and I’ve been to the beach today. Just walked down the slip and stared at the waves. Glorious.

@dancingwhilstfacingthemusic Wowee that can’t have been fun! I’ll keep in mind that leakage is a possibility.

when I saw the surgeon yesterday he looked at the drain and said it looked as thkugh it was about to fall out….!

How’s everyone doing? These last EC / chemo side effects are kicking my backside! Hope things are being kind to everyone.

@dancingwhilstfacingthemusic Hope you are feeling a bit better. I really struggled with EC. So glad to see the back of it, but have the first docetaxel on Wednesday and don't know what it will be like. I have just had cold mitts/socks delivered... apparently only one person has used them before on the chemo ward so we will see how they go down. I cannot have anyone with me so need to see if I can put them on okay myself/ask the nurses to help me with the final glove!
Finding my hair depressing... if has thinned all over rather than fallen out in clumps but I am wearing a scarf because I don't want to see my scalp between the hair! If it starts to grow back, when can I dye it? It was brown and though I had a few greys I thought nothing too major, but now it seems to have a lot of grey. I want it to grow back thick and then I want to dye it a warm chestnut brown... I think then I'll start to feel more cheerful!

@breastcancerpanic i was told to wait at least 6m before dying my hair just so it’s strong enough to take it. And to also make sure that you do a patch test first.

im in a better mood too.

I’ve got eyelashes again. Albeit stubbly ones less than half a cm. But lashes. My own.

and my brows have started to come back in properly. Phew.

I have full coverage on my head now too which is amazing. It’s coming back thicker than it was (and I had THICK hair).

im taking this as all positive signs that my body my poor body that has been through it the last 6-7 months is finally finally healing.

@ememem84 this is heartening to hear... and eyelashes that are 0.5cm sound quite long to me actually...!
I love the idea that once this is done everything will start to regenerate and heal. Can't wait to be where you are!

@ememem84 brilliant to hear about regrowth, particularly your hair. I’ve actually put mascara on my baby 2mm lashes today for the first time in months.

Gradually getting there on this last cycle - two more filgrastim to go and then hopefully the right chest will ease. I’ve managed a 10 min shuffle up and down the road today leaning on dh and the sunshine has done me good. If it’s kicking my arse, hopefully it’s kicking cancer’s arse too.

I used the cold mitts and socks all through from round 3. I put a pair of cotton socks on underneath and kept those on throughout. With the mitts, I used the suzzipad which already have liners (as do their socks). I slid my hands in and out of those to give me a break as I went along so didn’t need to have them both tightly fastened. Made it easier to grab a sip of tea or to give myself a break if it got too chilly.

I was wondering about hair dyeing, so thanks for that info @ememem84 I also have eyelashes again, and beginnings of eyebrows. At last! It's good to think I'm regenerating (like Dr Who 😂). If my gut issues and taste buds could start to resolve too, that'd be great. I'm still thinking about having hair extensions as soon as I can, because I miss my hair so much! (Even though it's growing back quite fast).

Saw the oncologist yesterday, and as I had a complete pathological response, I don't need to switch from Phesgo to Kadcyla (which has an element of chemo as well as Herceptin). In fact, I don't need Phesgo now, I can just have Herceptin on it's own. Yay! And the best news, my port is being removed next week - I'm so excited 😊 I hate it being there, reminding me all the time.

I've also registered my interest in a Moving Forward course at Guy's in June.

Had my first docetaxel (sp?) today. I wore the cold cap, mitts and gloves... by 'eck I was cold! It felt all a bit weird but better now I'm home, warm and have had some food!

Yay @BatshitCrazyWoman it really sounds like you are getting there. Excited for you about the eyelashes, extensions and port removal and 'Moving Forward' course... sounds great. You are definitely regenerating doctor Who style...!

@dancingwhilstfacingthemusic I'm really glad you told me about being able to slide your hands out of the cold mitts - without that I wouldn't have been able to switch to the new pads halfway through. I should have also said yes to the coffee... will do that next time. And I totally agree, a walk in the sunshine is definitely the way forward (though we had hail today?!)

Well done you @breastcancerpanic ! One down. Having had my hands strapped in for the first two sessions, I found it easier to manage comfort levels when sliding in and out. Not sure if that’s how it’s supposed to be done but my neuropathy stopped and I only have minor marking on my thumbs. The mitts and socks were more uncomfortable than cold capping tbh.

Did anyone find that the veins in the tops of their feet began to feel sore as chemo went through? I’ve found them really uncomfortable and it’s been hard to wear my old lady clarks shoes which were my go-to. I definitely have aching veins in my arms, so hopefully both will reduce now I’m done.

We’ve just had an amazing double rainbow outside. I’ll take that!

@BatshitCrazyWoman congratulations on your full response. I swear it’s the herceptin. Bloody miracle drug. I’m on Phesgo until July but once the chemo stopped I realised that the Phesgo did have side effects, they were just masked by the chemo. Mostly I just get achy joints & muscles & a sore mouth. But it’s a walk in the park compared to chemo too. Best of luck!

Brilliant news @BatshitCrazyWoman things are really moving for you.

I get achy legs from Phesgo. Apparently Herceptin on its own doesn't have side effects .... I'll find out on Friday!

Whilst I'm obviously over the moon to have such brilliant results from chemo and surgery, I feel like everyone else now thinks I'm 'better' and really I'm struggling with fatigue, muscle loss and the emotional effects of my diagnosis.

@BatshitCrazyWoman its weird isn’t it? It’s like a switch and I too feel like I’m falling off the edge of an emotional cliff. There’s so much trauma to process. I have “survivor guilt” as I have a couple of friends being investigated for rarer cancers, one of them only 20.

You’re absolutely spot on about people thinking “it’s behind you, you can get your life back” when really although it’s great the worse treatment is over, personally my life feels like a bin fire on an out of control roundabout. The best people in my life are acknowledging the emotional impact without me telling them. I’m going to look at the moving forward course. Have you seen the breast cancer now tv advert? It has me in tears every time.

My body feels a wreck, I need to lose some
chemo snacking weight and my reconstruction definitely doesn’t look like one of the photos in the MacMillan leaflet. I’m not up for any more surgery though. But I’m here to deal with all that, hopefully for a longer time.

Last filgrastim for me today. I have a party popper to let off afterwards. Today’s injection affirmation is something like “get me back to the theatre you little *+ers!”

I had a look at my stats on the new predict tool and see how much hormone therapy will help me. The chemo part was less than 1% benefit across the 5-15 years so I wonder how that fits with an Oncotype of 32. All I can say is I took medical advice and did my best to be compliant and let their skills help me.

I still have radiotherapy to go, so I will have had 7 months of active treatment in all. I've heard that i takes twice as long as your active treatment lasts to 'recover' physically - so 14 months - that takes me to May next year 😬 I can't imagine not feeling tired. I don't even know how to begin to regain the muscle I've lost. I've lost 14 kg 😔 in total. I also feel like a wreck. And then some daft twit says 'it's great you're better now'. Makes me feel stabby, frankly.

I'm sure we'll get there, @dancingwhilstfacingthemusic And well done on the last injection today 🎉 And all sorts of things make me cry now 🥹

Guys I didn't mean to imply by my enthusiasm that you would soon be sorted - I'm sorry if it came across like that. I am just excited to hear about the return of eyelashes etc and obviously that is not the return of the whole self!

I am behind you on the journey and reading eagerly about getting to the next step, but I have also heard that there is a difficult part of the journey once active treatment ends. I am also planning for this and would be v interested to hear what the 'Moving on' course is like once you start it.

Oh @breastcancerpanic I didn't mean you, or anyone on this thread! It's people in my life I'm referring to!! And I absolutely welcome the return of my eyelashes 😂

@breastcancerpanic celebrating together is good - we truly get it. Any small win is a big win. (Gives self a hard stare!).

I am in a much more positive mindset than this morning (all emotions are valid and change faster than anything though). A big win in that I drove for the first time in ages today - went down to a fancy bakery and bought breads and cakes for friends who have been stalwarts.

Let’s KBO.

Totally get it - celebrating the small wins is definitely good, but I also get very irritated when people minimise it, so just want you to know that I am not minimising the big job of recovery. Sending you all lots of support and solidarity!

On my chemo journey, I am feeling so much better on day one of docetaxel than I did with EC. I have read that the effects kick in a bit later, but right now I just feel so much more like myself. I'm not nauseous! I am high on steroids of course, and didn't get much sleep at all last night, but I'm just enjoying feeling kind of well!

Hey there!

mind if i join you? started chemo on Monday for secondary breast cancer 😥

@Iamallowedtodisagreewithyou hello and welcome.

I am truly sorry to hear that you are undergoing treatment for secondary BC.

I have found everyone here really welcoming, understanding and a source of top quality information, so I hope you find this strange and rather non exclusive club a good place to hang out despite no doubt wishing that you didn't meet the membership criteria.

Thank you.