Cancer Support Thread #71 - here to help if you’re dealing with cancer in any shape or form, come in and say hello.

[Brassica]

Hi again everyone and welcome to the 71st new thread for cancer support.

All those who are currently being treated, have been treated in the past, have worries and concerns and/or are having tests are very welcome to pull up a chair and chat, vent, rant, pour hearts out, share milestones and anything else! We are a very friendly and all-too experienced bunch on here and there are no questions too small or silly to ask.

Our previous thread is here .

Anyone with any type of cancer (female or male) is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Please can I invite current members to reintroduce yourselves below for latest situations and stories so far.

Born that sounds like a lovely day.

Best wishes to all who are scheduled for treatment and/or consultations this week. (Sorry, I should have made my list before starting to post!!)

All well with me. Last week I had the first Herceptin infusion that did not coincide with either chemo or rads. The side effects from the Herceptin alone were very slight. A little tiredness, a little joint pain but nothing that I cant manage.

I am still having some minor issues that are left over from the chemo though.

My finger nails were affected a bit. Nothing too disastrous but the worst affected one seems to be coming loose from about a third from the top. I will try and protect it but If I catch it on something and it pulls off that is going to to be painful. That nail does not seem to be growing as fast as the others. I don't know if anyone else has has this but does anyone know if this will just grow out? The other nails that were affected less have almost grown out now.

The other issue is my hair. I cold capped and kept 70-80% of my hair but it is quite fragile. My hairdresser tells me that she can see new growth in places and it doesn't look thin but I cant see any new growth for myself yet and it is still shedding at a much faster rate than normal. If at any point I run my hand through my hair I will come away with half a dozen loose hairs. Does anyone know when this is likely to stop?

The reason for my question is that if it is still just the result of the chemo then I am not too worried as this will sort itself out as all traces of the chemo leave my body. However, I have now started Anastrazole. One of the listed side effects of that is hair thinning and I am a bit worried that what is happening now is due to Anastrazole rather than chemo. As I will be taking that for some years it will be a problem if it causes thinning at this rate. How ironic if I saved all my hair during chemo by cold capping only to lose it because of hormone therapy.

Sorry, great long post about trivial issue but they are playing on my mind

Hi all,
Well I'm feeling seriously weird today.....delayed side effects kicking in...fuzzy detached head, everything tastes and even feels disgusting in my mouth, and quite a few urgent loo stops last night/this morning though to be fair that doesn't seem quite so bad as last time. Also got some pelvic bone pain....wondering if that's the immunity boosting injections. What fun.
I'm on my own today until later this evening so have pottered at home this morning and now on the sofa. First time I've really felt a little freaked out at being alone.....just because I feel so weird! Im ok though I think. Just gotta wait for it to pass I guess

born your family day sounds lovely
meercat what a pain about the hair and nails....not trivial at all...these things matter and especially when you've been such a hero with the hat of doom. I cant offer much as not in your position but I do have a real life chemo buddy whose experience is similar to yours i think and she's got a fab head of hair back deslite being on continued treatment. I'm not sure what the timescales were though.
I can't scroll back on my phone to see what everyone else has been up to.
skap bridget trumpton hope you're all ok.
And there was someone recently new playing the waiting game? Keeping everything crossed for you.
Good wishes to all from me in chemo hell today!

Hi
VictoriaBun welcome to the thread, though I hope it's a short visit. Has the post brought you an appointment yet? The waiting is so stressful.

WTF have you got something to occupy yourself with on the sofa while you are home alone and feeling weird? Mindless daytime repeats of Heartbeat perhaps .

meercat I wonder whether there is anything you could put on the nail to protect it while it's so fragile?

Hi all

It’s been a while, just jumping on to say hello and catch up on developments.

WTF, those side effects all sound very familiar to me - especially the food being unappealing. Do you find meat particularly horrible? I especially can’t tolerate chicken at all when I’m like that. The pelvic bone pain will be the injections as far as I’m aware - I’ve only had it once but the pharmacist confirmed that would be right. I found it very very difficult to get comfortable when I had it (though nurofen helped) so I hope you are not too bad with it.

Meercat with your nail I would expect that the problem will grow out as the lower part attached to the nail bed gradually gets nearer the top. To help the process I suggest you keep the nail short as far as possible and keep trimming unless that is difficult to do without pulling it further down. Worth getting finger stalls to keep on it as well to protect the finger - as much as anything it’s a visual reminder not to use the finger much. Hair I would ask your BCN about and fingers crossed it’ll stabilise when the chemo drugs leave your system.

Born your weight loss is amazing! It must be lovely to feel and see the difference from all that work and willpower! Congrats on the family christening and I hope you do get away tomorrow. Is it the States that you’re going to?

We’re just back from a long weekend away and I have chemo #14 tomorrow before school starts again for our children on weds. Think I’ve still got a couple of name tags to sew on! I’ve been feeling really quite well for the last couple of cycles and the only thing notable is very heavy legs if I try to walk up any hills.

As I haven’t been on here for a week or more I think there are a couple of new names on here I haven’t greeted so hello to you if you’re new and I hope the thread is being helpful! Good luck to all expecting results.

WTF99. Sorry the side effects are back. The taste thing is seriously horrible and coupled with the pain and dire rear must make you feel really rotten. I hope is passes very quickly. Does the taste thing pass before the next chemo for you or is it constant?

Skap and Brassica. I think you are both right about protecting the loosest nail so I have ordered a gel finger stall. Even if I only use it when I am working with my hands it might help to stop the nail being pulled off.

I am seeing the oncologist in two weeks and if my hair is still shedding by then I will ask him about it. If it is because the chemo is still in my system I am not worried too much. If it is the Anastrozole then that is more worrying

It is a bit cooler here now. I do like the sunshine but I did find the extreme heat a bit much to deal with.

Spoke too soon. Chemo cancelled today, platelets were 77 (should be 140-400). Did not expect that as I’ve been feeling fine! So now everything pushed back yet another week...I know it’s ‘only’ a week but I had dared to mentally tick off and start planning/assuming when I’d be finished. Won’t do that again.

Really sorry to hear that brassica ...so disappointing to get set backs.

Ladies....what are these finger stalls iof which you speak?

I feel marginally better today than yesterday which has been enough to lift my spirits a little, though I think I could probably qualify for the Olympic pooing championships and stand a chance of a medal. I'm not sure what's happening with my tastes buds ....again a bit better today but still disgusting.
I'm hoping day 7 (yesterday) was my side effects low point 🤞🤞

WTF. A finger stall is just a cover that protects either a dressing or an injury. I have added a couple of pictures. One of my manky nails. They look filthy but I promise they are not. The other is with the finger stall. It is a weird kind of soft gel but quite comfortable

Brassica what a pain for you. You do need to focus on the end point to get you through it and I can imagine that if that moves further away it is a bit of a downer

It is. I feel quite dejected to be honest. I am so over having chemo, being bald, etc. The only thing I am supposed to do every week is go and get poisoned treated, and I can’t do that this week. So it’s a waste of time.

Sorry to hear the dire rear is back making its presence felt, WTF. You really are going through it. Might it be worth asking your oncologist if he/she is happy for you to take some probiotic tablets perhaps? Chemo can clear out your gut flora and maybe that would help to stabilise things. I hope it all goes away soon, it’s so wretched while it lasts .

Aw brassica.....it's so tough...chemo becomes what we do and I can completely get how it will feel like wasted days for you. You have every reason to be totally sick of it all, but you will get there. Chin up and koko.....
Thanks for the pics meercat ...very helpful

Hello all. meercat I'm sure your hair will be lovely again eventually, quite understand how dispiriting it is seeing it thin and damaged. WTF sorry you are having to cope with horrible side effects yet again, really hope you have plumbed the depths for this cycle and are on the up again - and particularly that the dire rear clears up. Brassica, that is rotten luck, big sympathy to you. Such a disappointment. I'm pretty much expecting my next chemo to be delayed, but I will still be gutted. I have stupidly forgotten who's got the fingernail issue, can't page back on tablet, but hope fingerstall helps.
I spent a lot of yesterday trying to get a new laptop sorted, a very nice helpful bloke spent three hours on it with me, so glad I got him in as could never have managed what he did on my own. Very reasonable rates and will save me loads of money as he installed free software to replace MS Office - did everyone else know you have to pay for that annually now? Generally feeling a bit jaded and as though I need more fun in life! But physically quite well.
Greetings and good wishes to everyone here.

Brassica sorry about the disappointment. It's very hard to resist "planning" even when you know that things can and probably will go wrong. Was it you who was hoping to get away Feb half term?
I have been half planning a couple of days in a nice hotel later this month. The might be a window between getting my results next week and starting chemo. It almost feels like it's tempting fate though.

Bloodybridget Glad you are feeling well but jaded. I can't remember are you retired? Technology is not a problem in this house. DH, though pushing 70 was a programmer back in the day and has always been an early adopter of tech so he can do most stuff with computers and laptops. Annoyingly he struggles with mobile phones and DC and I get cross with him. No one in this house can so much as operate a screwdriver though so we have to get someone in for the tiniest of DIY jobs.

WTF you do seem to be suffering. I hope today brings an improvement.

meercat maybe some of those surgical gloves when using your fingers? Just to save you catching the nail?

I seem to have developed cording. Annoying as I felt I was healing nicely after surgery. I noticed my armpit was hurting more rather than less and I've looked at pictures of cording on google which pretty much look identical.

Skap. I had never heard of cording but have just googled it. That sounds horrible. I hope the pain soon goes away even if the cording doesn't

There seems to be no end to the ways that this disease and the treatments for it can sideswipe us. It just goes on and on.

Ow Skap - big sympathy re cording. "What fresh hell is this?" is a phrase that often occurs to me with everything cancer-related. But how lovely to have a little hotel break, that will give you a boost, I'm sure. Yes I am v happily retired. Was thwarted this morning trying to get the printer to work ("Troubleshooting was unable to resolve this problem") . . However I have created my MN ca support spreadsheet, so expect me to be spookily aware of everyone's details!!

meercat it's your poor fingernail, isn't it.

Hi all, I haven't been posting much lately, so just wishing everyone well for up coming appointments and treatments, I'm seeing the radiologist this week so will come back and catch up with everyone then.

I've been feeling quite low with all the waiting and wondering so hopefully after this week I'll begin to perk up.

Thinking of you all

Thinking of you too ellen. What day is your appointment? Waiting for results or information is very hard.

I've got cording too Skap reaching all the way down past my elbow. I can actually feel the tendon under my armpit like a guitar string. It wouldn't be so bad except that I have to put my arms above my head and lie very still for 15-20 minutes every weekday for radiotherapy 😐 Add on a couple of places where my mastectomy scars have split slightly under my armpit and a dose of antibiotics, this baby keeps on giving......

Hi and hugs to everyone else, I swear my brain fog is getting worse not better so you will have to excuse me not doing the individual response thing!

Wide awake and waiting for the night to finish. We leave home at 6.30am so alarm set for 6 am . Quick shower and a cup of hot water .
I think I am second on the list so shouldn’t be a long wait.
Might make a hot chocolate in a minute and I have a can of squirty cream .oh bugger it’s nearly 2am so now I am on water only
DH held me while I sobbed myself to sleep I am just not ready for another operation and one that is more invasive than last time .
I am still sore and the thought of doing it all over again is so daunting .
I know others have it worse and feel such a wimp but ...nah ! There is no but ! There is only me at the moment .
Anyway Onwards and upwards .
Hugs to anyone else who needs them .

Dd came round with something I said to her on my initial diagnosis painted onto a 2 inch disc . I love it so much .

It’s daylight here and with the light the pity party leaves .
I needed that winge but if I could go back and edit it I would .
The sky is pink over the sea and I will enjoy our gentle drive on the empty roads .
Will update poss tomorrow.

Trumpton. No need to edit. Sometimes having a safe rant is the best and only way to cope.

Very best wishes for today. PS. I love the disc your daughter got for you.

meercat23
She painted it for me . Bless her .

Trumpton sending you absolutely the best wishes for surgery and recovery. I'm sorry I didn't see your post in the night.

Morning all!
I'm on day 10 and feeling quite a bit better today. Loo stops have reduced, crushing fatigue is less and my mouth is a little less disgusting. I do seem to have developed acne like spots in various places though, including a huge one on my inner thigh which popped spectacularly this morning much to my great relief! Apologies if im putting anyone off a late breakfast

I'm gonna venture out in a bit as I need a digital passport photo for online renewal and think I should do it whilst I still have eyelashes!. I'll have to wear my wig which is odd really. And my passport mug shot will now be my chemo face which is a shame, but never mind.

skap and snows I had cording after my 1st mastectomy. I can remember being quite down about it as it was painful and I couldn't see how it was going to get better. I think doing the stretching exercises really helped though. And I used to sit watching t.v. with my arm leaning across the back of the sofa to gently but persistently stretch it out as I was sitting there It did go away completely.....vanished suddenly almost overnight, so don't give up hope.
I've got it again actually, in the chemo vein that the red bit of the fecking FEC combination of drugs went into. I'm told it will go away. More stretching for me I think.

trumpton sorry you're having such a hard time with the surgery It is a bit of an ordeal really isn't it. Fingers crossed for the best possible outcome this time.

How's the spreadsheet coming on Bridget? Have you found any fun things to do? I need some ideas as fun seriously lacking here at the mo.

Best wishes to everyone

Trumpton I'm sorry I missed your nightime post. There have been many nights in the last few weeks when I've been awake at ungodly hours with American Twitter for company. If you are second on the list you may well be coming out round about now. Lovely to see pink sky and sea. Let us know how you are. Sending a big virtual hug.

Snows radiotherapy already? Doesn't seem long since your surgery. How many sessions left?

WTF so glad you're on the up. Hope you can get a flattering photo .

The BCN has made me a physio appointment next week. Meanwhile I'm told to massage it. Sounds like it's not going to be a quick fix. I also have another nagging health problem which I'm going to have to see the GP for. I must have been one of their most frequent visitors in 2019 and really don't want to go.

Thanks Bridget, it's tomorrow, god I feel like such a numpty at the moment, everyone else is going through so much.

Trumpton, best of luck with the surgery today, it's not easy to get your head around everything.

Skap I just realised I never answered your question about chemo, yep I don't need it basically because her2 positive, from what I can gather it's because the cancer was hormone related so can be treated with Anastrozole and radiation, hope you are feeling a bit better.

I'm determined to catch up with everyones news over the weekend, I lost my bit of envelope with everyones name on it so I'll start again