Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

That's good to read, @ememem84 . Hope I'm the same!

@ememem84 🎉🎉🎉 to that!

Hi everyone, first time posting on here. Am 33 and was diagnosed with TNBC a couple of weeks ago, still awaiting results and many more scans and biopsies before I know extent.

Just joining to say hi and offer support and solidarity to this lovely community I've stumbled across. Feeling incredibly low at the moment, am reading that it's normal with so much info pre treatment plan but my gosh it's hard.

I'm an over-thinker and already worrying about reoccurrence before treatment has begun! The title of this thread has really called me out 😂 any words of encouragement or to hear that there is a light at the end of this long dark tunnel appreciated!

I was diagnosed with TNBC in January 2023. It’s just coming up to a year since I finished treatment, surgery, chemotherapy, radiotherapy. Last year was a slog. The treatment is tough. It takes some time to recover physically and emotionally. The fear of recurrence ebbs and flows, but doesn’t govern my life.

I have not sugar coated it for you, it is tough BUT there is light all along the tunnel, as well as at the end. It is tough but doable. Ask for and accept help. Be kind to yourself. It’s shit, but keep plodding on in the hope you will get to the sunlight uplands of NED.

Hello @Mintymood. Sorry/not sorry you have found us! But you are most welcome here. @grannygoggles is a very supportive ear on here and has wise words. To echo her..you are in (in my opinion) the worst stage of all of this. Everything is unknown, your world has crashed in on you and it's all you will think about. These feelings are all normal. I found it so scary. I ended up on anti depressants and back up sleeping pills for a while. I hadn't had so much as a blood pressure test in years until my boob went bad on me. You will find a way through it once you start to get answers but at this point in time just be kind to yourself. Lean on others if you can, on line here, or in person. If you're not working try to distract yourself if at all possible whilst you can. Try to keep your mind from wandering. I went walking for miles and obtained a vinted habit! Anything other than Google. Look after yourself and keep venting!!

@Mintymood
@GrannyGoggles

I have tnbc. Was diagnosed oct last year. I cold capped and finished treatment a few weeks ago.

If I can help or support in any way I am happy to.

@Mintymood Sorry that you have found yourself here, but it’s a useful and helpful place. I had tnbc diagnosed at the beginning of Sept and like you was in complete turmoil, it is utterly terrifying at the beginning and the waiting and testing is torture but as others have said it is the worst part and once you have a treatment plan it becomes a bit less awful.

I was initially going to have chemo followed by surgery but for various reasons the plan was changed and I had a lumpectomy last week. Obviously it’s no fun but I do feel that at least I’m getting somewhere. Have you been offered the BRCA gene testing? My results are due in about 4 weeks but I’m not giving it too much thought yet, the way I coped was to not look too far ahead or dig too deeply into what might happen, just take what was immediately in front of me, deal with it & move to the next issue.

As has already been said, lean on people, allow them to help and don’t be afraid to admit you’re frightened. Wishing you strength for the next few weeks.

@drivinmecrazy Hope yesterday went ok & you are at home recovering

Hi @Mintymood I have been on these Cancer threads for far too long. I am waving from the end of the tunnel. I can tell you that the stage you are at currently is the most anxiety provoking and difficult of the whole cancer rigmarole. Once you have results of the initial tests and a treatment plan your anxiety level will drop and you will be eager to get on with things. Stay in the present! Don’t run ahead or worry about things beyond your control. Just get through each day or hour and time will pass. I found the Calm app and learning yoga breathing practices very helpful. As @GrannyGoggles says treatment is tough but doable.
I had a Triple positive BC in 2020, went through the whole triathlon of chemo surgery and radiotherapy and fought back to fitness then in 2022 I had a TNBC on the other side. Back to square one chemo surgery and radiotherapy then six months more chemotherapy “ just to be on the safe side 🙄”. I am now through treatment and working hard on my fitness and enjoying life. I am at peace with whatever happens next. There is a lot of help out there, and it really makes a difference. It will all be fine!

@Grannygoggles Thank you so much for a realistic but uplifting message, I think that’s just what I needed to hear.

@somewhereonthe517 really appreciate you taking the time to write this message as well. I have had a lot going on pre this happening (Dad got stage 4 metastatic cancer, Mum had cancer and lost aunt to ovarian) plus long term health issues so it’s a real sucker punch. This is all such helpful advice and thank you for giving me the freedom to vent to people who get it!

@tothrlefttotheleft that’s really kind. Do you mind if I message you with a question or two? Is cold capping something the NHS provide or is this something you buy for yourself? Thanks!

@frostyfingers nice to have someone to go along in this journey with. How do you feel post lumpectomy? I’ve been advised to go for a bilateral mastectomy I think it’s belt and braces due to age, grade, family history and yes BRCA1 carrier. Unfortunately I didn’t have time to have my risk reducing surgery before this happened 😩 thank you so much for your well wishes, the same goes to you in your recovery and onwards treatment.

@TopOfTheCliff definitely so true about staying in the present, I need to work on that. Gosh you have had quite the journey, being at peace with what’s outside your control is such a good place to be. Thank you.

Sorry first time at posting on here and clearly messed up some of the tags!

Meant to tag

@GrannyGoggles and @tothelefttotheleft properly

Just following and reading along the thread on Day 5 of Round 1 EC chemo. Really just coping a day at a time, very appreciative of the solidarity and encouragement here. It is heartening to see! X

@Mintymood everyone else is right, this is absolutely the worst stage. Like torture, so hugs to you. When you have a treatment plan, you do find yourself in calmer waters. I've coped by allowing those waters to carry me along. I have triple positive breast cancer, so have 5 months of chemo (2 down, three to go 😬), surgery, then radiotherapy. I'm also cold capping, I think it's available at most/all NHS hospitals. A few of us are doing it, so ask away.

@Flibberdigibbit how are doing? EC can be tough

Waving! Hope all post surgery are doing ok. I’ve just done round 3 of paclitaxel. It’s been ok from week 2 but early days. My liver is not liking it though and I do wonder if they will have to pause treatment to let things settle. We’ll see what bloods bring next week.

My treatment went ahead this week despite being almost 9x over the preferred level. They stop at 10x over. They gave me the choice of whether to have bisphosphonates this week and I asked to defer as I don’t want to take any painkillers whilst my liver is clearly still stressed. They’re reducing the paclitaxel to 75% dose next week if it goes ahead and have an urgent gastro referral in for me to keep an eye on things.

I’m cold capping and didn’t take paracetamol this week. It was ok - I’ve a long history of yoga practice in putting my mind somewhere else, which helped, as well as a long history of getting a cold head swimming in the sea!

My EC is planned for after paclitaxel. Then 5 years of hormone suppressants.

I hope new starters have found their local Maggie’s centre. Well worth visiting. Ours is onsite by the cancer centre here in the NW.

@BatshitCrazyWoman I feel like I'm in discovery mode given it's the first cycle, and as the days have gone on the fatigue and impact has felt worse but I think the worst of it is from the injection to stimulate the white blood cell production. Wow those bone aches are something! I'm trying to feel positive that at least they are working. Looking forward to hitting the day when it feels like energy is returning, not retreating.

my sleep has been pants, despite being tired. I've been active in the days to try help but I'm still struggling to stay asleep through the nights. Anyone find this is just part of it? Or got any sleep tips? Xx

Hi all
First time posting on this thread 👋
I'm coming to the end of chemo (4/4 doxytaxel done and 2/4 EC) and looking now at mascetomy and lymph node removal in January and then radio and then hormone treatment.

I've cold capped and shed a lot of hair but can still more or less manage with a hat/hairband or mega stylish combover 😬
More is shedding with the EC but I think I have some re growth at the same time

I've been a bit in denial about the surgery but it has started keeping me up at night now.
I have primary/nursery aged kids and I'm mostly worried about looking after them post surgery. I do have a really supportive husband, family and friends but I am the one that they tend to come to/jump on/cuddle first.

How long did people stay in hospital after surgery including reconstruction? I've just read 2-7 days and I cannot imagine being away from them for 7 days.

How long was it really sore for? How long was it before you could lift/carry preschooler down the stairs/drive?

I'm wondering if there is anyone post surgery here who has managed with young kids and what your top tips would be?! Please?

@Flibberdigibbit i hear you on those bone aches in the early cycles. I have found that they have eased as the treatments have gone on and I don't get them now. I don't know if that's typical? Maybe the body gets used to it?
I would also say that my kids have been bringing home so many bugs and I've had a cold on 70% of my treatment cycles but so far nothing has gone scary at all and the body has fought bugs off as usual - which I'm going to credit to the jabs!!!!

Sleep - argh! For me it's a combo of steroids and anxiety that keeps me up. I've started to try to read rather than scroll the internet at night, get up and have a wee in the dark, and have kicked my snoring husband to the spare room

Positive news from me this morning.

I was having a down day yesterday and was really wallowing in how shit things are.

however had an amazing sleep and am back to bright and perky. Also. The big news is that my underarms are feeling prickly and fuzzy…..!!!! Somethings coming back!

@Flibberdigibbit the bone aches did ease, after a few days for me. I found paracetamol helped, but I know it doesn't for everyone. I've kind of got used to broken sleep, and read my Kindle until I fall asleep again if I wake up. I mostly wake up for the day between 4 and 5 am. I'm not working, and don't have young children, so I can potter a bit until I feel more human! I tend to feel worse first thing in the morning.

@ememem84 I'm glad a good night's sleep has improved your mood (I tend to have gloomy thoughts when I wake up in the night). And yay for prickly underarms !! (Although I'm enjoying my hair free legs).

@ememem84 thats brilliant. A good nights sleep makes all the difference. That was me yesterday- today was 4am and makes me a bit emotional to say the least!

great news on the hair - I think my armpit hair is starting to go but head hair currently holding on as it’s early yet to shed I guess (3 paclitaxel and cold capping).

@winetimenow hello! There’s a lot of support here. Glad you’re nearly through chemo and cold capping has worked. I’ve another 13 chemos to go so it helps to hear positive outcomes.

I was in as a day case for my single mastectomy and reconstruction. It seems to be the way they do things. I came home with a drain tube and bag which gave me a couple of glitches some nights but was only in for ten days. I was told not to lift anything for 3 weeks nor to lift my arm higher than shoulder height. With the mastectomy I was not to drive for at least 3 weeks. This may be slightly different for your situation so check consultant advice.

pain was well managed but you’ll need support with the children (which you’ve got) and I guess will need to be having chats and a little practice pre-op at their level for “ah mummy, sore boobie, gentle”
or suchlike for the earlier days.

@winetimenow Welcome. I had delayed DIEP reconstruction on 17 September and was kept in 7 days, was given own room (NHS). The original mastectomy was done as a day case (but no reconstruction) and lymph node removal was done as a day case but they kept me overnight. In all cases I didn't have drains at home which I prefer, my kids were older but I have an 8kg cat who would view drains as a giant cat toy. In all cases pain was minimal (full lymph node clearance was the most painful) but in all cases no pain relief after a week and in some cases after a few days. I had full movement in all cases pretty much straight away though you aren't supposed to put arms above head for a week. Some people take much longer to stand up straight after DIEP but I didn't and there will be a physio to help advise. The stomach does feel tight. I was advised no lifting until 12 weeks and no activity except walking for 12 weeks though hospitals vary on restriction times, I have had no complications. Some surgeons send people home earlier with drains in.

I think the best thing is to plan for up to a week in hospital, there is some negotiation on this and its done case by case as long as there is not an essential medical need. You will need to protect your stomach area and breast operated on and my bandages were only off at around 6 weeks, I am still officially not allowed to bathe at 7 weeks though do lie in the bath and quickly do the scar area. Our hospital gives a binder and good to have two of those so can wash one, each surgeon has own criteria of what they use. Had to get control knickers and special bra as well. We had a cleaner in to do a one off clean just before I went in which I recommend if you can afford that. Its worth getting lots of things to cover stomach to help stop small people / creatures like I am wearing fleece and also have fleece bedding and cushions / pillows. It was incredibly hot in hospital like 40C which means you get own room but heat is very hard. I took button up front opening pyjamas just cheap ones as might get stained and these were good for once catheter out. Also had some Molton Brown little travel bottles and they were lovely as well to smell nice again. But most of the rest didn't use. You are mainly resting and at first attached to the bed. I have had weekly check ups since to week 8 so far. You are allowed visitors from 8am to 8pm at our hospital, obviously not day of surgery. Hope it goes as well as it can.

Thanks @Penguinsa @dancingwhilstfacingthemusic
Sounds like a really wide range of experiences
I think it's helpful to know that and manage expectations a bit
Good call on the cleaner! And sounds like I am going to need to dial up the childcare help.

@winetimenow just to add that mine was immediate reconstruction with implant, which is more straightforward, I think.

@winetimenow I was also immediate reconstruction with implant, and I spent 1 night in hospital. That was 10 days ago, and I'm currently at home still with drain attached! I don't think lifting a child would be recommended at this point (my children are definitely too big to lift! but I don't think lifting small children would be okay either). Maybe you could get into a pattern where you sit side-by-side for your hugs for a while?
My surgeon told me to basically stay at home for the first week, and not really do anything. I pottered about and did some basic cooking etc but nothing too onerous. In fact we also had a wider family crisis in that time and I left home to go and help with that, but that was needs-must and not recommended. This second week is more about going for gentle walks etc, so all on the up!
Pain is surprisingly not bad. The drain port area is the worst of it for me.