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

[LemonDrizzle10]

New thread - old one nearly full!

@chasegirl I was told, after examination, mammogram and biopsy, that there was a 60-70% chance that it was cancer. And it was. I was alone at that appointment, went straight from work on public transport, and had the world's chattiest Uber driver on the way home. The whole thing was a bit surreal, to be honest, but I'm very used to doing/facing stuff on my own.

Lumpectomy ladies @TheFormidableMrsC (?) seven days after surgery I need to get the train up to central London for my Phesgo injection. I'm assuming I'll be fine for that 🤞🏻? Just a train, no tube or anything. After they've done the histology, I might be switched to three-weekly infusions of Kadcyla (and I assume blood tests etc before). Hope not. A quick injection is much better!

@BatshitCrazyWoman Similarly, I found out it was almost certainly cancer at an appointment I breezily went to alone (I assumed it would be a cyst). It turned out to be quite big, and for there to be two bits. I cycled home, but actually went straight to a friend's house before home as only my 18 year old was at home and I felt like i needed to tell someone else before I splurged it out to him. It was very surreal, and I think in many ways the worst day of my life. Or maybe that was the next day.

I have had my second EC infusion on Wednesday (2 days ago). Unbelieveably, one of the anti-nausea drugs that I had on a drip last time was not prescribed, so could not be given. The nurses think it was just an error on the doctor's part! I have been told to take some of the anti-nausea drugs for a bit longer to make up for it, but the first 24 hours after the treatment were pretty bad this time. Starting to feel a bit more okay after that - though feeling generally queasy. Can still eat okay though... and am drinking water whenever I feel well enough to do so. I'm going for an awful lot of wees - but I've been reassured this is normal and no other signs of an infection.

I'd been wondering if the cold capping was magically working, but I think the shedding might be now starting in earnest.

Sorry - that was just my personal experience. Have realised that my first paragraph may be unhelpful to anyone waiting for an appointment! I was just so blithe and confident before I got the news - it was a total shock. Everyone on this thread who is waiting sounds much more prepared than I was so I hope that whatever happens it will be a lot better for you (and of course, that it will be good news rather than bad!).

@breastcancerpanic I had my 2nd EC on Monday and am really feeling it now, in bed and so, so tired. Nausea wise I'm ok, just a bit queasy but I am managing weird food combinations, I think I would have had a wobbly if the anti sickness wasn't prescribed. Lots of wees are normal, they put so much liquid into you, and I was told to drink loads to flush it through. I annoyinglyhave chemical phlebitis on my arm which means I will have to have a PICC line though, so I'm waiting to hear on that.

Back to bed now, it's scary how quickly the day passes by when you're semi concsious for most of it! Hope you feel better soon.

Oh and my hair is beginning to fall out, not in clumps but there are definitely more strands on my pillow than previously. 😥

@frostyfingers it’s good to hear your checkin, I’ve been wondering how you were going on. How many chemo cycles are you having (sorry, my brain has checked out with this treatment)? Sorry to hear about the phlebitis. My Picc line is now my friend. I plan to have a tiny Sakura cherry blossom tattooed on my whatever little blemish it leaves as a mark of spring and new life.

@BatshitCrazyWoman I would have felt up to it, but would want a firm and comfy bra and to have the crescent pillow that breast nurses often give us clamped under the boob. I had to do a dash 100miles in the car as a passenger 2 days after my lumpectomy as dad was in his last hours. The crescent pillow and steadying my boob with the other hand made that doable. I found that I was super aware of people possibly bumping into me when I was out and about so I continued to use the crescent pillow in supermarkets etc. I had a poncho in the wardrobe which was a great coverup.

@breastcancerpanic bloomin heck missis! That’s a shocker re your anti nausea. Well done for riding it. I had the same bladder irritation for a few days after EC, it’s a side effect - as if we didn’t have enough of them. I swapped out caffeine apart from my first tea of the day. Yorkshire tea decaf teabags are surprisingly good. I also drank cranberry juice and a tonne of water as I can do without any irritation developing into a UTI.

Hope everyone is doing ok. After a wonky week following EC #1 I’ve felt more like myself than in a long time in the few days as I approach EC #2 this coming Weds.

Anyone else on chemo this coming week?

@dancingwhilstfacingthemusic @frostyfingers @breastcancerpanic I hope the initial effects of EC are easing for you all. It's really not for the faint-hearted!

Thank you for the info @dancingwhilstfacingthemusic , hopefully I will be fine 🤞🏻

I'm now 10 days post final chemo, and doing okay. Apart from the tiredness, and needing an afternoon sleep. Sore mouth is finally easing.. Having an MRI today so back up to London. I was practically asleep during my last MRI, so let's hope I'm the same this time. I'm seeing the oncologist on Friday for the results. In between I have a couple of nice things planned which will be lovely.

I've managed to arrange someone to bring me home and stay with me for a few days, but I'm struggling to know how much 'help' I'll need. This stuff is hard when you live on your own 🙁 I should probably name change and post on the relationships board about the shit show that is my 'relationship'. Once I've got the bulk of my treatment over, I'm going to have to have a good hard think about it, but it's all too much at the moment.

Went adventuring with the dc and DH yesterday. Walked about for an hour and half. Around local reservoir. Through nature trails etc. absolutely pooped. Furthest I’ve walked for a while. But I did it!

@dancingwhilstfacingthemusic @BatshitCrazyWoman I will not deny that this last week has been tough and I was hoping to feel better today but not feeling it yet! The thought of 4 more of these is pretty daunting at the moment but I'm trying not to dwell on that, just on the here and now. Is shortness of breath a thing for anyone else? It takes so much effort to do so little and I find that bit quite scary.

The phlebitis hasn't really improved despite various creams and me doing what I should but hopefully it will subside, and I'm waiting to hear about having a PICC line in. In a way I wish I hadn't been given the choice to have one or not and just told to have it and then at least this issue would have been avoided, but there we go.

Good luck with the MRI @BatshitCrazyWoman, I always find them quite soporific!

@ememem84 The walk sounds lovely, to think I used to ride a horse for several hours a day, do all the associated work with them and can now barely go 100 yards without resting is truly depressing but you give me hope! I am still going out and checking them as I feel fresh air is good but it takes forever.

On the plus side DH is coping remarkably well with his chemo and general routine, obviously things are not normal but considering where he was a few weeks ago they are much better. He is my carer at the moment. 😀

@frostyfingers happy for you that DH is capable of being your carer.

So after taking longer than I should have to recover from my lumpectomy and sentinel biopsy I'm now having a mastectomy on Wednesday.
My original op was beginning of December, but due to complications from my Biopsy wound everything has (again) been delayed.

I'm not able to have reconstructive surgery at the same time due to a previous condition (I'm fine with that btw).

So, last time my lumpectomy was literally no problem in terms of pain and management.

It actually felt like a really minor surgery.

But I want to mange my expectations from my mastectomy.

Should I expect some degree of pain?
Will it be so much harder?

Weird questions I know!

I'm obviously expecting it not to be pain free, but is it likely to be so much harder?

I've had loads of chats with my consultant and nurse, but I really want to hear from those that have been through it 🌺

I don’t have the comparison of lumpectomy but my mastectomy was ok pain wise. I insisted on being given coedine and I did take it for a few days but I could have managed without.

the bigger thing was stiffness but that was ok , just did the exercises and had some patience !

Currently feeling rubbish - had EC#2 last Wednesday so about 5 days ago. I just feel queasy, tired, bad taste, down.
After this I'll have one more EC, then on to T which is docoxetal or something like that (3 sessions, 3 weeks apart). I am hoping that this will be less bad than EC, but what I have read has left me unsure.

@frostyfingers breathlessness might be anemia - that’s what mine was. As long as your red blood cells are not too low you should be able to continue.

@drivinmecrazy my mastectomy was fine - 2-3 days of pain able to be controlled by paracetamol and now, 4 weeks later, it only hurts if I lie funny on that side in bed. Much less pain that appendix, and about a quarter of child birth. I had a seroma which was weird rather than anything else!

To those of you having chemo, I finished mine in November, mastectomy in Dec and I now feel pretty much back to normal physically. Walking 10k steps a day, running after the kids, driving etc. Not yet back at work and still mentally healing but I’m physically good. I didn’t believe it at the time but I did get back to “normal”, you will do it!

Thank you littlecaf. I was feeling a bit like this chemo is breaking my spirit. But your message has helped, and dh made me scrambled eggs on toast which also seems to have helped.
I love the idea that one day this will be behind us and we'll go 'back to normal'...

@Littlecaf That's interesting re the anemia, I'll mention it when I next speak to someone. @breastcancerpanic I know what you mean about breaking your spirit - but I'm day 7 now and finally feel a little less awful, hang in there.

I have a visit from a friend pencilled in for the end of the week and then an outing for the week after so something to look forward to otherwise the whole thing is just so relentless.

@breastcancerpanic it’s the lack of red blood cells - they carry oxygen so if there’s less of them you get wheezy. I had it from the fourth round of chemo all the way until the sixth. Was crap. But I’m fine now so it does pass, you haven’t just lost all of your fitness during chemo. I’m just standardly unfit now 😂

its good to pencil in little nice things between sessions on the week you’re most likely to feel ok. It certainly kept me going. You are all amazing, head down, keep going.

@frostyfingers well done - you are making progress! The chemo can affect your heart muscle while you are on it, particularly the Red Devil (Epirubicin). That can make you breathless eg on the stairs and more tired. With Herceptin you get an echocardiogram before and after to check on cardiac function but on regular chemo they only seem to offer it if you are struggling. It is pretty rare to get heart damage that doesn’t go away once you are through treatment. I have had seven doses of Red Devil and my heart is totally normal again now. Phew!
I can cycle up the steep hill to my house again with the usual degree of moaning.
Don’t forget once you are through treatment we will welcome you onto the Great Recovery thread and encourage you with a return to activity. It’s so good once you can see the light at the end of the tunnel!

OMG I so want to be on the great recovery thread. I hope that I can get there...

@breastcancerpanic keep on keeping on. It’s a tough gig. I was blithe like you at my mammogram recall appointment.Went on my own, was going to go to Sainsburys on my home. I DID NOT have cancer on my way in, but sure did on my way out.

I’m the other side of treatment, in my new world. Fingers crossed for you

Went to the gym today with my trainer. Squatted 70kg. Probably over did it. But that’s a pb for me.

Well done @frostyfingers I also felt breathless and kept an eye on it. I think the filgrastim injections made my chest feel a bit tight too.

@drivinmecrazy I’ve had a lumpectomy, margin clearance then a mastectomy with immediate reconstruction. Pain wise it was well managed all round and I just needed the odd paracetamol. Recovery-wise I needed to take things a lot more carefully on the mastectomy as that was a 5 1/2 hour op so I’d had a lot of drugs which needed to clear my system. Yours should hopefully feel a lot more straightforward and easier to recover from.

@BatshitCrazyWoman great news about the mouth. We’ll all cheer on as we see you building back up. I wonder at what stage a sense of taste comes back fully and the slimy taste goes away.

It has really hit my teeth, I think. I randomly had the corner of a molar drop off today and managed to get an urgent appt at the dentist. Having taken a look around my mouth she has scheduled a double appointment for my checkup and I think has spotted various things. All was fine pre chemo and I also had a hygienist session. I’ll need to get teeth sorted before I start on the osteoporosis infusions.

@breastcancerpanic do you feel your side effects are any different / better / worse than cycle 1 of EC? I hope the next few days go gently on you.

I am excited about the great recovery thread. I can sense the end of this section of nonsense. 3 chemos to go. Next EC Weds, bloods allowing tomorrow.

This is a piece that has really resonated with me as I rumble through the final 1/4 of an epic long series of chemo. @BatshitCrazyWoman yiu may find it interesting too. I admire your patience in getting through these unusual times and not making any changes until a later stage. https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

@breastcancerpanic I had some breathlessness on EC, which eased once I was on paclitaxel.

And @dancingwhilstfacingthemusic I'm so sorry you've had tooth issues too - that's pretty much what happened to me. I need to have the tooth crowned, had to wait until chemo finished, and then couldn't get the two long appointments two weeks apart in the little gap between the end of chemo and my surgery date. So my Zometa has been delayed until post-surgery and post tooth crowning. The cat needs her injections too, and I couldn't fit that in, either!

I'm also looking forward to the great recovery thread!

Thanks for the link to that article, dancing. I think I read it right at the beginning of all of this, when it was a bit overwhelming. I feel like it's our friends and families that need to read it!

I had an ultrasound on my arm today which shows there are blood clots in a couple of veins so now I'm on blood thinners for the next 3 months 🙄. The pharmacist made me laugh as he asked how much I drank and said that it's not because alcohol interacts with the medicine but that if I drank too much it would increase the risk of falling and hurting myself.

An hour each way to the hospital, flogging round the car park and then finding my way to the various departments has wiped me out - off for a nap now!

Hope you're getting on ok @dancingwhilstfacingthemusic & everyone else.

I hope you're okay @frostyfingers and you got your nap. It's shocking how tiring doing stuff is now 🙁

I hope everyone is doing okay?