Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

@Noidea2114 I just wanted to offer a virtual handhold. I'm so sorry you're having such a tough time. I also had two ops for breast cancer, and I think I massively underestimated how much they would hit me. I felt very depressed and weak after the second one. I suspect it is normal to feel as you do - two surgeries so close together is traumatic both mentally and physically. There's also a feeling of anticlimax - or at least there was for me. I think I'd though that once they'd cut it out I would feel better. But in fact, all I could focus on was that there was more treatment to come. It seemed like I'd just swapped one fear for another. Try to be kind to yourself and allow yourself to rest as much as possible.

Thanks for all your messages guys

You’re all going through so much yourselves and yet you have shown such kindness to me and have taken the time to reassure me and share your experiences. I tore up. X

Loved the “don’t google” - too late 😬😂😁
And the “they get the big guns out” - thank god!!

I have put my big girl pants on (put them on when the lumps were discovered), trouble is they keep on slipping down

Keep telling myself “I got this”, I’m going to extend that to “we’ve got this!!!”

💚

Yes, please do, @BlueSkyAhead- we all try to look after each other. You've described the aftermath of diagnosis so eloquently- I really identify with it. I hope that you and @Livelongandprosper find the support you need here- I've found it invaluable ❤️

@Livelongandprosper and @BlueSkyAhead welcome to the thread. I have stage 4 ovarian cancer. I have been through chemo and hysterectomy and I have been started on a maintenance treatment which I'll be on for about a year. On Thursday I was told that there are no signs of cancer on my latest scan.
Waiting for test results and plans is awful and the 'what ifs ' are torture. My cancer was picked up on a scan for something else. I received a phone call 24hrs after the scan and the Dr informed me that they had seen a mass on my ovary and it was likely to be cancer.After that things moved pretty quickly and when I met the oncologist he presented me with a treatment plan. He was very clear with me that I could choose not to go with his treatment but he would think 'I was a fool'.
I have a 7 yr old so even before the consultation I was certain that I wanted the cancer gone and would take any treatment that required.
At the end of a successful treatment it is easy for me to say put your trust in the medics but doing that paid off for me. My surgeon was lovely she was very good at explaining the operation and also explaining the risks of the operation which can be quite blunt but need to be done.
I hope this helps and can answer some questions about treatment, keep using this thread for support x

@AlbertCampion thank you for your reply. You have described exactly how I'm feeling. Before the 2nd operation I was talking about how much better I would be.
It's now like I've hit a brick wall. Yesterday I actually admitted to my DD and BF how I'm feeling in great detail (DH already knows). I usually say 'oh I'm fine'.
This BC has now knocked me for 6 I'm normally a strong person and don't know how to act.
I'm going to go for a walk today and try to feel more positive.
Good luck to everyone who is going through a difficult time 💐💐

Afternoon lovelies

Welcome @Livelongandprosper and @BlueSkyAhead these ladies have been my constant since my biopsy result in December. I was led to think it was just a cyst so it was a shock when I got the diagnosis. Since then I have had 2 MRI scans and a CT scan. I've now completed my 1st Cycle of chemo which I have every Friday. Cycle 2 starts next Friday. Echo what @TopOfTheCliff says about googling as a lot of it is American and as my nurse said they treat cancer differently. Stay strong 💪

Silly me washed my hair just now and I looked like my dog with massive matted hair. Have now lost half my hair and have started getting bald patches. The pirate look might me here sooner rather than later.

Was just reading my Ondansetron tablet leaflet and it says recommended dose for chemo is 8mg twice a day and I've only been having 4mg twice daily. I think after my horrid dose on Friday I'll double them up for a week.

@Noidea2114 big hug, I'm with you on the appetite but I'm pleased you can manage to get some sleep at night. As I have no energy to move during the day I'm just not tired enough at night.

Big wave 👋 to all.

HC x

Hello all - I'm still feeling pretty crap after chemo last Monday, but just waving and sending good wishes to everyone, and a very warm welcome to newbies. Sorry I can't quite manage to engage properly.

I keep hoping to hear from InOtterNews, I am so worried about her.

@Noidea2114 Having 2 close surgeries sounds very challenging I'm not surprised you're down. You also have another crossroads ahead - one of those difficult stretches waiting on results.

I find the darkness comes in waves - I get really down when I'm sick post chemo, then I get a bit high and manic for a few days, then I get down again before the next chemo. Dh cannot really deal with me being sad - he's a practical fixer sort but some sadnesses cannot be fixed like a piece of DIY. He gets busier and busier as I get slower and slower.

There was no discussion about my treatment plan - I was just given it - no stats or anything I went and looked them up though. I hardly ever speak to my oncologist I think she must be very busy (when I'm down I wonder if perhaps she doesn't like me...) - I have very little contact with the hospital generally but if I call the nurse they always get back promptly. I've relied a lot on my local GP practice to fill in the gaps and hiccups (infections, blood tests).

The one choice I might have to make is between lumpectomy (surgeon's choice) and mastectomy (onc's choice). I'm very torn. Not wanting 2 surgeries is in favour of a mastectomy - also means no radiotherapy. Then again, I'm a big bosomed girl and a mastectomy is going to be pretty drastic and surgeon is confident I don't need one (although all nodes must come out).

@Bloodybridget I hope you start to feel better and I'm also hoping we hear from Otternews.

I'm starting to think about life after treatment. I wasn't happy with my life before the diagnosis and I don't want things to go back to the same old. I also want any changes to progress pretty quickly - as the song goes: we're not promised tomorrow.

Hi all - and welcome to the newbies. I echo everything everyone has said to welcome you here. It feels strange not to feel like a complete newbie myself any more (diagnosis for breast cancer was in Dec, started first chemo Dec 21), but in a sense I hope that's encouraging for you as you do adjust to a new normal once treatment starts. It's the waiting and worrying at the start which is really the worst torture.

I haven't posted for a while now - selfishly, really, as I've been lucky enough to have been feeling pretty good these last two weeks (after second chemo; cycles are every three weeks) and so have been blissfully pretending that I don't have cancer and life is continuing as normal. (Or as normal as possible in a lockdown with virtual school for the 8 year-old and DH managing most domestic stuff on top of work from the kitchen table - thankfully 2 YO can still go to nursery!). Have been forcing myself to exercise (treadmill or walks outside) every day, and even managed a couple of outings on the cross-country skis with DD (we're in Canada and have a nice bit of snow in the city at the moment). I've been feeling less useless since I've been able to do normal things like cook dinner and help with homework, and generally morale has been good. Basically, I've been that annoyingly positive cancer person!

But that's all tapering off now, as I have to face up to chemo number three tomorrow and I just Don't. Wanna. Go. I don't want to feel rotten and bedridden for all of next week. Physically and mentally. The weighted blanket description is so accurate! And I'm dreading the Lapelga injection (for boosting wbc), because it makes me feel like I've been beaten up with a crowbar. It all seems quite predictable now, which should be reassuring, but it's also a total mindfuck as right now I feel fine and want to continue feeling fine. Trying to focus on the fact that my port wound is now healed so at least that bit shouldn't be as sore as it was last time. And another local mum who's also in treatment who I've been texting with lots over the last few months is going to be in at the same time as me tomorrow, so we're actually going to meet for the first time - feels a bit like a blind date! It will be nice to see a friendly face, though. Going in alone with everyone masked up to the nines makes it all feel extra lonely...

Hair is now gone, and although I had to avoid looking at mirrors for the first little while it wasn't as traumatic as I'd expected. And it's cut my morning routine in half! Whoever said they no longer shower every day - yes, here too. Being stuck at home all the time helps, in that sense. Kids have adjusted to it better than expected, also - toddler thinks my baldness is funny and keeps asking to squish my head, and DD has named my two "fun", cheapie wigs (which I doubt I'll use much, but are there just in case). So, that's been a relief.

@FizzyOrange, @Acinonyx2, @AlbertCampion, for some reason I have it in my head that we're all at a similar stage of treatment, so have been thinking of you in particular. Big hugs to everyone, though, and I hope for positive results and minimal side effects for us all xx

Thank you for such a warm welcome, you've all got so much going on yourselves yet as @BitOfFun said, you all make time to support one another. I am glad to join this thread.

I'm finding it overwhelming at the moment.

I feel I'm about to be making life-changing decisions with the surgeon and just hope I make the right call.
I'm hoping for a double mastectomy without reconstruction.
My reasons are: I've already had a dcis removed 10 years ago by lumpectomy (which required no further treatment afterwards). Now I have an invasive lobular carcinoma, possibly with more ductal carcinomas. I have a family history of breast cancer on my mum's side so I believe it's not an 'if' the cancer returns after this, it's a 'when'. Invasive lobular cancer also seems a sneaky beast which is hard to detect.
Several friends have warned me if I manage to get my wish I may regret my decision later.
I'm 64, I'm very active, my other half is entirely supportive of my wishes - is there anything I haven't considered about how I would feel afterwards? I think I'll just feel safer. Of course the surgeon may not agree to it anyway.

@backformore I've also been feeling better last week and I've also got chemo tomorrow so feeling a bit down - I like feeling better and thinking about other stuff. Those blasted injections - I know they work really well as my WB counts are always great (although anaemia is setting in) but they really are rough going. But I'm going to 5 of 7 - new drugs as well, EC (the red devil).

@Livelongandprosper setting aside my rabid fear of surgery in all forms (I blame my mother ) I don't get the big resistance to a double mastectomy generally. Are we really defined by our breasts? What is it you're going to regret exactly? Are you a topless page 3 model or something? Are breasts worth dying for - hell no! I'm probably going to have a single - and now that is weird but still it's the surgery and logistics that worry me. But I'm not getting any reconstruction - keep it all simple.

@Livelongandprosper welcome to the nicest thread on MN, sorry you have to join xxx

@backformore I'm pleased you have had a good couple of weeks, that is really encouraging and I hope it happens for you again on the next cycle.

@Bloodybridget so sorry you still feel so rough and hope it eases soon. Are you having the same side effects as the last cycle? I had my second chemo last Wednesday and the crap has well and truly started today. I have the same side effects as last time - crashing exhaustion, awful bone pain in my legs and a 'burnt mouth' and numb fingers. Also, a little nausea too this time. I have a little pharmacy on the stairs with all my pills and potions - I want to tidy it away as the whole house seems to have been taken over by my illness. Hoping we hear from @InOtterNews soon too.

@HumphreysCorner you sound a couple of days behind me on the hair front. I got DD to cut mine really short which looks tidier and also has stopped a lot of the pulling and itching that I was having. I have been wearing a pirate scarf all the time, only taking it off to shake my head to release a few more hairs lol and that has helped normalise the look for me. I felt so silly in it a few days ago but already it feels ok.

@Noidea2114 I find the lack of appetite awful too and it is so disappointing to be looking forward to your favourite and then only be able to eat a tiny bit. My freezer and cupboards are overflowing and yet absolutely nothing is appealing! Hoping I am not going to spend the next week forcing down rich tea biscuits...

@Acinonyx2 I also have a rabid fear of surgery. I will be thinking of you tomorrow. I felt very low in the few days before this chemo, just knowing the horrors that lie ahead.

@AlbertCampion oh my word, that 'Predict' program would have totally freaked me out! I found it hard enough to choose between 15 and 30 mg of codeine for my co codamol let alone decide on treatment options! I wasn't given a choice, just told what was happening, which suited me really.

@Lizdeflores for the maintenance chemo, is it a 'weaker' one than the original ones for OC? I think it is likely that I will need the same.

@BlueSkyAhead never ever google, it is the road to madness! Remember also that survival statistics are done on data that is 'old' and may not be reflective of current treatments or advances in medicine and also, may not be relevant to your particular condition.

Sending love to all xxx

@Livelongandprosper I’m in my 50s and had a double mastectomy (no reconstruction) last year and have absolutely no regrets at all (in fact oddly very pleased!). My surgeon just laid out the facts and left the decision to me (refused to advise). After the surgery though she told me I made the right choice - or at least what she would have done! If nothing else I love the symmetry as well as not having to get mammograms every 3-6 months (family genetics!). So choose what is right for you.

Like everyone else hoping to hear from @InOtterNews and send flowers to Otter and everyone else 💐🌻💐

I may already have said this, so apologies if I am repeating myself! But re mastectomies, I am having mine in 2.5 weeks hopefully - going for single for now and no reconstruction. Then in 6-12 months I will either have reconstruction, or remove the other breast, or both, or I'll stick with the one breast. I want more time to decide and for now I'd like to keep the surgery minimal and keep the recovery as straight forward as possible. I am meeting a plastic surgeon at the hospital tomorrow just so I know what my reconstruction options are. So far everyone I've spoken to has said, as long as I have a counselling session (which I think is a good idea tbh) I will be able to have my healthy breast removed if that is what I want - and I think it might well be, time will tell!
I too am thinking of @InOtterNews lots xx

Was also wondering about inotternews - sending hugs and hoping to hear from you soon.

To everyone having chemo tomorrow, hope it goes smoothly and that you have minimal side effects.

bloodybridget hope you start to feel a bit better soon.

To those waiting on results - we're here to hand hold and pass the time. As others have said, the waiting for results is, bizarrely, the worst.once you know one way or the other, you have a plan of what needs doing. The waiting is awful!

I'm having physio tomorrow as I'm still suffering from restricted movement and pain in my boob and armpit. The physio has been helping, but improvement is annoyingly slow. Also seeing my surgeon, to have a check up following the last infection I had - and hopefully to hear when I might be having my next operation. It's (understandably) been delayed because of covid, but I've been told that they might ne restarting soon. Would be good to be evened up, as I am currently a c cup on my cancer side, and a g on the other. Looking at the silver lining of the cancer shitshow - I'm finally going to get the breast reduction I always wanted!

Love and hugs to everyone!

Hi @FizzyOrange I m having Bevacizumab as maintenance it is immune therapy it has so far been gentler than chemo time will tell.
I'm also worried about otter and hope to hear from her soon x

at the piratical parrot and explicit pants!!

I've realised from a few recent posts that I must be on my "good week" before my 2nd chemo next Thursday. My list of things to do reveals how slovenly & slatternly I am: it includes pack up the christmas stuff to go back in the garage and deep clean the shower Having my 2nd FEC chemo next week. Downstairs hair is going, head hair coming out in the comb. I saw some sort of half-way house wigs online that are hair attached to a wide headband which looked easier to handle than a full-on wig, and there was a ring of hair to wear under a hat/headscarf. I was thinking if I wore a fake fringe under a headscarf I could look like Rosie the riveter in that WWII poster, a bit rockabilly. Otherwise there's always the pirate look to fall back on

@Zorgothslugofdoom I'm a G cup too & would like to go down in size, but I'm due a mastectomy & reconstruction so I'm thinking they will just reconstruct back to the G cup. It'll probably be the optimistically entitled "tummy tuck" reconstruction so it would be a bit greedy of me to have a tummy tuck & breast reduction at the same time!

@Luballoo I've been reading about women who keep one boob, some call themselves "uniboobers". Also women who opt to be flat - can't remember if they have a term or not. Nothing other than reconstruction has been presented as option in any discussions I've had; it's assumed you must want to be the same. A definite advantage of no more massive boobs would be being free of grim underboob sweat.

@Livelongandprosper Welcome With that username, are you a Trekkie??

@Bloodybridget Hope the post-chemo crap gets better for you soon.

Today is the third attempt to get my radiotherapy planning scan done. First time I was still swollen. Second time the machine broke down so third time lucky? At least they are still running as my DEXA has been cancelled due to Covid.
@Zorgothslugofdoom did you have an axillary node clearance? It seems quite an unpredictable procedure. I’m still leaking at 6 weeks but I have excellent shoulder movements.I am a physio fanatic and am loving my daily routine with the rubber bands and Swiss ball and squishy egg thing. My spare room is like a gym now. But I have more broken bits to fix than just my shoulder.
@Bloodybridget how is your DP doing? Is she walking okay now? Good luck with this chemo round. And the same to everybody else too.
Pirate Greetings to all. Oohaar

Good luck with Chemo treatments today. Have a CNS call scheduled for Thursday but I'm not sure what that means.

I'm really worried about @InOtterNews too. Hope she's ok.

Big wave 👋 to all.

HC x

@HauntedDishcloth I figured the same about hair under hats! I got two fun cheapie wigs but can’t imagine wearing them for very long (as they’re a bit itchy and I know that they’re not my real hair), or without the security of a hat. That said, I like the idea of them peeking out from under a scarf or beanie...

Good luck with round 2! I’m heading into round 3 of FEC today. Shouldn’t be anxious as they’re not adding any new drugs until next time, but I’m dragging my feet!

Hi everyone. I haven't been on in a while. Have been putting head down getting on with chemo. About to start cycle 3 out of 8 on Wednesday so enjoying feeling somewhat 'normal' before the fog descends again.

Sorry to read so many newbies since I was last on. Sorry I'm not name checking you all but want to wish you all luck at your various stages. I have been reading on my phone but by the time I go to post I've got everyone confused. Menopause and chemo to blame I think.

Thinking of @Bloodybridget hope chemo going ok and your DP has recovered as well. @Starmer hope you're doing now you're off the dreaded chemo train and that your recovering daily. Also worried about @InOtterNews Hope she's ok. Thinking of you @BitOfFun and hope you're ok.

Just wanted to say I had pzifer vaccine on Friday half way through week off chemo. No reaction not even sore arm and no effects. I don't think I would have refused it even if I had of grown an extra set of ears as. Lol. Next one 9th April. Psychologically it was a boost for me and nurse said that even first jab keeps you out of hospital should you get infected.

Going to crawl back under my stone this week to get through next few cycles but sending love to you all.

Yay @gillmoregirl - so glad you have had the vaccine! I have been invited and got my appointment tomorrow. Will be glad to get it done.

@FizzyOrange @Acinonyx2 @backformore I also think we're at roughly the same stage of treatment. Hope you're all doing ok. After feeling appalling for the first week of cycle three, I am actually feeling really good now - the best I have felt since I started chemo. It seems so weird - I was convinced this cycle would be awful after the way it started.

V concerned for @InOtterNews. Sending lots of positive thoughts her way.

Hi ladies,

I rang to see if my appointment could be sorted, it's apparently going to be another 8-10 weeks 😱 I have already been waiting 4 for an urgent breast referral. I'm going to ring my GP tomorrow and see if there is anything she can do. Let's hope I am one of the lucky ones where it's nothing to worry about. The lump is still there unchanged.

We could afford for me to have a private appointment I guess but I'm saving all of our money for dh (stage 4 bowel cancer) just in case we need to try any drugs privately.

Feeling a bit more stressed about it now.

@AlbertCampion great to hear you’re feeling well! Are you on FEC? I’m doing cycle three of it right now, then on to three cycles of docetaxel (like Taxol) which my oncologist just told me is likely to give me bad muscle pain afterwards. I’ve gotten off fairly lightly so far with minimal nausea - just feel tired and heavy for the first week, and the Lapelga shot makes me achey for a day or two- so now I’m dreading round 4! Just when I thought I was getting the hang of this... 😕

@loubieloo4 That’s appalling! I hope you can get a swifter referral. How much would a private appointment be?