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)

I can't help with hair advice @KentishMama - I've lost mine completely twice now. I've got a nice few millimetres of baby hair coming through now so it won't long. I remember last time it came back at different lengths in places so I got my hairdresser to just tidy it up - rather than all over trim. Alas, my leg hair seems to be growing in abundance. 😒

Also eyebrows have come back bushier than ever - I've never had to pluck or shaper but I think I have to now.

Hey @Lubballoo and @Acinonyx2, I found the node clearance more painful than the lumpectomy. I think for the first week or two, everything was pretty numb, but then nerves started reconnecting and my upper arm was quite painful, especially on the inside. Kind of a burning sensation, like really bad sunburn? It hurt to touch it, too. However, by week four it had all settled. Then, however, my arm started to feel really tight, and the physio diagnosed cording (look it up!) And I had a few sessions with her where she basically massaged the cords out. Painful, but it's been okay since, touch wood.
Also, there's any area under my arm that's still numb and likely to stay that way thanks to a cut nerve.
Top tips for recovery:

1. Do your exercises religiously.
2. See a physiotherapist sooner rather than later if you get cording.
3. Buy an electric razor so you can shave your numb armpit without cutting it.

I didn't make that sounds very easy, did I? Sorry! In the grand scheme of things it wasn't horrendous, but I didn't expect any of the above, so it threw me a bit.

@InOtterNews I've got baby hair coming through too - very strange texture! But my eyebrows are only just starting to fall out, so it's really good to hear they will come back, and perhaps better than before!

Thanks @KentishMama that's all really good to know! I'm not sure I'll have any razor requirements given that surgery should be right on the back of chemo but given the moustache situation it'd be just my luck to grow luxuriant pits super quickly

@KentishMama These are things I have read about - anxious about cording and mobility issues in my right arm after clearance. This is a place for the warts and all version! Forewarned is terrified forarmed!

@Lubballoo I've also found chin hairs persist while all others fall!

... leg hair has started put here too. I was quite looking forward to losing that, dammit.

Forgot to say: cough still present. Antihistamines help a little, but the chemo nurses think it's related to post nasal drip caused by absence of nasal hair. And that it will clear up on its own once that grows back.

@KentishMamaTry adding a nasal spray to specifically dry the nose - I use Beconase. I'm also trying not to leave a trail of bloody tissues round the house...

@Acinonyx2 Yes, very much forearmed!
It's my right arm too. Really hoping to dodge lymphedema, though simultaneously worried they might not take enough/the right lymph nodes if they recommend partial clearance.
Re nasal spray, I've found saline spray really helpful, I use the calculator stuff meant for babies!

Er calpol stuff, not calculator!

I've just dropped off DH for his thyroid surgery. They are using clips, not sutures. He's having a drain overnight and the consultant says to book at the GP's to have them out after two days. It seems a bit soon to me. Anyone here know about thyroid cancer surgery?

Just spotted this new thread. Some familiar names but lots of new ones.
I was a regular last year with breast cancer IDC ER-HER2+.
Spent many a 3am on this thread.
Waves to Bridget and Otter
This time last year I was counting the days to my last chemo on 31st December and hoping 2020 would be a better year. Look how that turned out!

I had surgery chemo and radiotherapy so happy to answer questions about any of them.
@KentishMama are you on Herceptin? It gave me a permanent runny and bloody nose yet the nurses would never accept that was a side effect. Everyone I know who had herceptin had the bloody nose.

Cording and mobility - I did the exercises ruthlessly but still got cording. I saw a physio very quickly and she showed DH how to massage. I can tell you more if you get it. The surgery caused numbness under my arm which mostly cleared up but there are patches of permanent numbness that don't cause me any problems.

@Skap I'm not on Herceptin, but I have sinus issues at the best of times, so I'm not surprised I have a runny, bloody nose now. Using Sudafed as allergic to anything that contains eucalyptus, and the saline stuff does nothing for me... I'm going to deal with issues from the Sudafed later :)

How are you doing now, @skap? Are you well?

@Skap I'm on Herceptin and have runny bloody nose!

Everything tastes a bit crap too.

I'm very well thank you. I had to stop my Rheumatoid arthritis drugs for chemo and a major problem afterwards. It has taken much of this year to get it back under control but all is well now.
You asked about radiotherapy. I was on my knees with RA pain and fatigue when I had it so it was hard to distinguish which came first IYSWIM. I had no pain or other noticable side effects though.
I had Paclitaxel chemo and my hair did start coming through before it stopped but then bizarrely my eyelashes and brows disappeared. I would say the proper hair, as opposed to fluff, grew after about 2 months. Then lockdown struck and I buzz cut it back down to about a cm. My big disappointment is that the curls and waves have now gone and it's back to being straight.

@Acinonyx2 - sadly the bloody runny nose persisted long after chemo, until a few weeks after my Herceptin ended in April. My Herceptin was cut short because of covid and I only got 9 instead of 18 doses.

Name change fail

Hi - diagnosed with triple positive BC in June (genetic as it turns out). As a result had double mastectomy in July and 17 lymph nodes removed on left side. 16 clear - one with a 10 mm tumour - but extra capillary so started ACT chemo in August (herceptin & pertuzabab every 3 weeks since October). Last taxol is Boxing Day - can’t wait!

I’m also stuck 3500 miles from home due to COVID and not told anyone in London yet (except my Aunt as needed genetics information - she has been very supportive).

I am hoping to make it back in 2021 - hopefully will have hair by then (and fingernails!)!

I agree with @KentishMama - after node clearance do the exercises ASAP (and keep at it). I noticed a bit of cording and massaged this myself with baby oil and it went quickly.

@Acinonyx2 Thank you so much for your message yesterday - it was what I need to hear when I got up and I really appreciate it. How was your first port use?

Hi to everyone else, and sympathy/strength! I’m 38, diagnosed last month with breast cancer that got to two lymphs and something weird in my femur (still being investigated). Thought the lump was a cyst related to finishing breastfeeding my youngest this summer 😔 But they’re treating it with curative intent, so I’m lucky. Had first of six chemos yesterday, then another six non chemo treatments, with surgery and probably radiation.

Yesterday’s first chemo was exhausting. In at 8, left at 4, saw ten different med professionals (including mini visits from pharmacist, nutritionist, etc). Baronness von Sketch on my phone was a great escape. Nurse super lovely. Receptionist a grumpy biatch who needs some empathy training - may mention next time. Came home feeling good but headache started in eve and feeling heavy and groggy by night. Not sick, though! Headache and heaviness gone now. Son at nursery today 🎉 so nice and quiet here with daughter and DH. May test out DH’s new treadmill for a little gentle exercise (recommended). And he gets to give me a shot in the stomach this afternoon to boost blood cells, haha 💉

@Acinonyx2 yes, I am going to DD's for Christmas Day which I am really looking forward to. She is plating up another meal for me to have on Boxing Day so I don't have to cook.

@backformore I'm pleased you got through your first chemo. What is it with some of these receptionists? There is no need to be rude and grumpy like that.

@TopOfTheCliff good news you are home after your surgery and hope you are resting well.

Can any of you shed any light on this please? I had my first appointment on the phone with the oncologist last week to discuss my treatment plan, all my questions answered and we left it that the cancer nurse would be in touch to organise my pre assessment. Today I had an appointment dated the day of last week's appointment for a 'follow up' tomorrow on the phone with the oncologist. There was a blood test form in the envelope, marked 'pre chemo', which I have been to have done but it won't be back in time for the morning. My mind is racing, thinking there is something awful he omitted to mention last week. Does anyone know what this appointment could be for please?

@FizzyOrange I always have a phone consult day after prechemo bloods (results come through same day). Just to check bloods are good for next chemo, e.g. WB count etc.

@backformore Congratulations on surviving your first chemo! I'd almost forgotten - shots start today :( Definitely rather do it myself than have dh do it though. They really work for most - my WB counts are always high neutrophils higher than normal range!). But they can give you a lot of aches and pains. I find a clarityn antihistamine 30 mins before helps then ibuprofen especially to sleep. Just have to go a bit easy on the painkillers so they don't mask a temperature.

First port use last time already had the needle from op day before - this was first time having the needle put in. Very easy. Port is actually less comfortable though than a good cannula - but you don't have to keep having new veins used, that's the big advantage.

@Acinonyx2 ah ok, thank you for that, hope that is the explanation.

@Acinonyx2 my girls are being very good. The youngest is a bit nervous of our new kitchen, and we're trying to get things sorted enough for when I come home (we moved just over a week ago).

Hi everyone

My brother in law has sorted a wig for me with a friend of his and it's so like my hair.

Spoke to my nurse earlier and it looks like my treatment plan will be sorted around the 12th January.

Never had an MRI before but another step closer, not looking forward to the idea of me laid on my front with my arms down by my side and my boobs poked in a Madonna style pointy thing.