I think my body might be prioritising re-growing my armpit hair. It's not coming back anywhere else, but my pits are starting to feel distinctly stubbly.
Rude, just rude.
Feel exactly the same! Posted on the July Starters thread. I've had a really crap day today, feeling really low, tearful, fearful of the rest of my treatment, chemo finished but not fully recovered yet. I've still got radiotherapy to do in October and herceptin injections until June next year. I'm also fearful of what the future might hold?
Sick of all the comments about being brave and glad that my chemo is over (last one cancelled due to side effects). Also things like "Oh, so and so had Breast Cancer and they're fine now", or people who vaguely know one person who has had chemo for a completely different kind of cancer and on a totally different regime saying things like "oh they were fine during chemo" Aaaargh! I think the worst was "Are you sure you'll lose your hair, so and so never lost their hair".
So thankful for this forum and being able to talk to people who understand.
Ha Ha Belle - love the visulisation - will keep it in mind for the next stupid text i receive!!
I think there's this huge expectation on people with BC to be "brave" and stay "positive" throughout. Partly from other people, but also a bit from ourselves.
The "brave" thing is just daft. Bravery is when you make a choice to do something that puts yourself at risk. We have no choice! Bravery is irrelevant to us. Let's leave that to firemen, soldiers, etc.
The "positive" thing is more difficult. I think positivity is important, but the problem is that a) we have BC, that's a huge negative thing, however you look at it and b) we're given a shed load of drugs and procedures which make us physically and mentally less able to cope. So staying positive becomes impossible at times.
I've been shocked by how low I've felt on chemo. I don't think I've had a truly happy moment since my diagnosis, which I can understand, but the depressive feelings caused by the drugs and fatigue are something I never expected.
It's really difficult with other people because they don't know what to say and can't really empathise. I found out yesterday that a friend was diagnosed with BC in April and has just finished surgery and radiotherapy (no chemo), but hadn't told anyone. I had a really good chat with her but I then spent the rest of the day analysing what I'd said, worried that I'd said something that would bother or upset her, because I know how easily it's done.
Be kind to yourself, only do what you're up to doing and remember that you're not alone in feeling like this.
Totally get this. It's not just a tax thing. I find the waves of despair hit me and there's nothing I can do about it. My last chemo is on Thursday and I am constantly getting the 'Only one more!', 'Nearly there!', 'Light at the end of the tunnel' comments and in reality I am dreading it. Because I know that I am going to feel crap again. And I am not over feeling crap from last time yet. Yesterday was the first time I made it out of the house for more that one hour. I managed a whole three - go me! So you are not alone.
I find visualization helps ... 😉
Think sometimes you just have to hit these 'low' days to get through. I hit a brick wall after number 3 FEC, went right under and low - had hateful, evil thoughts to thrash out - luckily with support from a friend who has had terrible management in Southamptom, we thrashed out big time - it was just what i needed to get me through the anx!
Had second T on Thursday and had a text from a ex work friend who said - just 2 more to go - felt like replying - why don't you have one, and see how you feel having another!! I think some just think its a vitamin fix or something similar not complete poison that your whole body is affected by. When i reply back to these people and say - every chemo is a mountain to climb- the reply is - you'll get through it, you're nearly there - so bloody patronising, AND of course i'll get through it - we all have NO choice!!! She finished text by saying - going on holiday in 2 weeks really need it - You need a holiday, (she retired 5 months ago!) what about me - this has taken over my whole life since March - no holiday on the horizon for me, what with T number 6 to go and 3 weeks of radio!!!! It's just irritating , not worth the bother of being upset by it, I know they don't understand what we are going through - how could someone who hasn't been there - but sometimes would prefer no txt to these patronising ones!!
Take it easy, it may be accumulation and be reassured you're not in this on your own.
My Dad had severe Psoriasis from age 27. He had three loads of chemo during his lifetime and was always thrilled when his Psoriasis went during the treatment. I can't remember how long afterwards it stayed away and I can't ask him as he sadly passed away two years ago. If you like I can ask his 'widow' (girlfriend).
My skin has been really good during chemo - about the only thing that is. It's a bit annoying when people say how well I look when I'm feeling completely rubbish and I have to explain that it's the chemo drugs!
I know how much my dad suffered with Psoriasis so I really feel for you and I hope it stays away for good.
Hope everyone is okay today. My tastebuds are making a reappearance - craving chilli con carne for dinner!
ps. re: clumsy and stupid chemo brain: I forgot to cover my PICC line in the showe (second time) and dropped something else on my bad foot, so really limping around now and can't go out in the rain as I can't get shoes over the dressing.
Sleep is such a weird thing, isn't it? I'm sorry Rosie & Julia, you both had bad nights last night. I'm not the greatest sleeper at the best of times but have found a definite pattern with chemo. Bizarely my worst nights are around days 6-8. I have no idea why that should be but regular as clockwork it's happened with every cycle. Clearly nothing to do with steroids as they're well out of my system and I'm on a reduced dose anyway. Weird.
Interesting tip from your physio Julia, I'm horribly clumsy (not sure I could manage the standing one foot - never been able to do that!) and it's definitely got worse. Dropped another pint of water last night and missed my mac by about 3 inches! Seems I will never learn *sigh* And magnesium, Rosie? Another interesting tip and definitely worth looking into. Thank you both.
My interesting snippet is that I have finally found a positive side effect to chemo! I know. Shocking, right? I've suspected for sometime that it might actually be doing me some good besides hopefully nuking any rogue cancer cells. I get psorasis, not especially badly but enough to be annoying and at times painful. I was dreading having a naked scalp as one of my worst areas is the back of my head. Since starting chemo my psorasis has gradually improved to point where it is currently non existent. From this point of view, my skin has never been better. Or at least not since I was a child. I googled it this morning and it turns out that this is a 'thing' rather than a freak one off. Which makes sense as chemo targets rapidly reproducing cells and that's exactly what psorasis is. Just wondered, has anyone else found this?
Hi Julia from another sleepless bedroom!! I too had 2nd T yesterday.
Got the flushed red face, but think due to steroids as started before had chemo, but chemo made it worse, though starting to subside, but being very humid and hot yesterday probably didn't help.
Sleep is rubbish - Wed night only slept 11pm - 2am, and struggled to get off to sleep tonight - think went off at 2am till now.
I took an oral liquid form of magnesium supplement after my double mastectomy for nerve damage repair, as googled what helps nerves repair and came up with. Magnesium. Within 5 days of taking, the horrendous sunburn feeling and constant pins and needles running across my chest went, so continued to take for a month and have no numbness or altered sensation across chest or backs of arms - so wen I started getting pins and needles on day 5 of first T in left hand and foot I started magnesium again ( off my own back as have checked on the link belle gave for conta indicration wiv herbs and nil cotra indications found) and within one day it stopped and not had again. I take it every other day and works for me so far.
Will email and check wiv nurse later today, but will continue to take as have 2 friends who have got bad neuropathy in hand and big toe, and they felt it got worse after 3 T had finished.
Like I say I' m doing it off my own back, but just a thought.
Hope today is good for u
had 2nd T yesterday (Thursday) and am up with the steroid insomnia (although I did take a sleeping pill and got a good 6 hours continuous sleep, so not so dire as last time). I had an allergic reaction very early on this time: quite dramatic with sudden breathlessness and red face. My partner called the nurses who rushed over, stopped the treatment and pumped me full of more steroids before restarting! All was fine in the end and they were able to continue the treatment successfully.
Regarding peripheral nervous damage under T, especially hands and feet: I haven't had it yet, but my dear post-mastectomy physiotherapist had some top tips. She said people can become very accident prone, dropping things, bumping into things, falling down, etc. She recommended avoiding sudden movements (sudden turns) and exercising balance: walking heel-to-toe along a line on the floor, standing on one foot then then other while waiting for kettle to boil, etc, as part of daily routine.
For mouth troubles, I have been so lucky so far: I can and do still eat anything not forbidden by chemo diet (except for spicy food and curries! I eat those like mad). However, last time I had oral thrush, which I'm pretty sure was caused by the steroids alone, because it flared up so fast (was really there before chemo would have had time to hit). Have those of you with mouth troubles been able to tell the difference between thrush effects and chemo effects? I'm wondering how much of chemo mouth is really thrush mouth, because that was pretty gross: couldn't drink tea, even.
Bad news on my side: my white blood cell counts were really low (WCC = 3.2) so just above the margin for allowing chemo. I'll be trying to eat lots of (veg/dairy) protein to help build that back up, and take my folate and Vit B12 much more than this past cycle (I think I only took them twice). The cycle before last I paid more attention to diet and the supplements, and my WCC rose from 4.3 to 6.3 - who knows. I fear the real culprit in the drop is Taxotere, though, that there is nothing much I can do about it, and that I might have my last chemo delayed as a result (or worse, get an infection into the bargain). Oog. Will just have to be extra careful with hygiene & food this cycle.
That's all from a sleepless room! Take care all,
For all of those strugging - and in a low mood
I found this to express how I felt after FEC5 and before FEC6
Literally hanging in there - I do hope it makes you all smile - the end of chemo is very near!
Rosie, thanks for the tip, I'll ask if I can have fluconazole with my last T, got to be worth a try! My number 2 T was a bit better than my first T, perhaps just because I was a bit more prepared for the se's this time (though the emotional low was maybe a bit lower, probably just cumulative fatigue). I'll keep my fingers crossed that you get a slightly easier ride too. Good luck, only one to go after this!
Marije, I'm glad you're feeling better and sorry that the emotional side isn't so good. I'm really crabby with my long-suffering husband at the moment, ironically this gets worse when I start to come out of the chemo fog and feel better. I'm also finding that I feel quite detached from him, and from my son, because I'm in this 'cancer world' that they can't fully understand, but I'm sure that's quite normal. It's a really difficult time for everyone involved. It might be worth giving the BCC helpline a call to see if they can suggest anything to help you both, I'm sure it's not at all uncommon for relationships to struggle in these circumstances and they might have some helpful advice. Or at the very least a sympathetic ear.
Having second T this afternoon and will be given fluconazole as a precaution this time to take home with the rest of my meds, as mouth so bad last time, but was told not to start fluconazole until 48 hrs after chemo as it can make chemo more potent - hope you've been ok and better on number 2.
Virtual hugs to all!
I'm now day 6 post chemo, and I'm not sure if I'm cheering too soon, but so far I feel much better than last round. Maybe due to the reduced dose??!
Last time this time I was back in hospital with a mouth so covered in ulcers that I was in tears and getting morphine. This time round my mouth is OK, apart from the metallic taste and a bit of a horrid feeling tongue. I too started taking my mouth medicine earlier (day 3), some stuff for thrush (flucnazole?) and one for cold sores (Aciclovir?)
Also using Difflam, and brushing after every meal.
Pretty exhausted, but it seems to come and go.. Sometimes it all of a sudden feels I have weights hanging off my arms and legs. But after a little rest it's OK again. Definitely still doing my every day things, I'm too restless to lay in bed!
Weird tummy, bloated.. But Senokot seems to have helped this time (2 before bed time).
Just feelig a bit low emotionally. But I suppose it's also because my husband and I have not been getting on 😞
I seem to be in this 'chemo cloud', and I feel he's not there for me in little attentive ways. He's always complaining about his work, HE'S so tired and exhausted, and HIS day was much harder than mine! Ggrrrr.
But then I suppose I have to be honest and acknowledge I have not been a joy either! It takes two... But it's hard sometimes to get out of that negative spiral..
Thanks Sue. Particularly interesting about the tolerance for sweet food as I'm wanting to add loads of sugar to everything!
I might have a go at not eating before/after the chemo to see if that helps. I usually graze the whole time I'm there, so perhaps that's aggravating the problem.
just popped across from the May thread - again, lol.
Have been doing some research re loss of taste - as it also happens on FEC and gets worse down the line...
This is what I have found and sorry for the long post - but make it easier for those who have challenges following a link -
There are 4 main types of taste: Sweet, sour, bitter, and salt. Sense of taste is primarily located on the tongue. Each type of taste is located within taste buds on different sections of the tongue. As you chew your food, it mixes with saliva and as it comes in contact with the taste buds, messages are sent to the brain regarding your sense of taste. The brain processes the messages and helps you identify different tastes.
What are taste changes?
Things you can do to manage taste changes:
There is no one magic solution for taste changes that suits everyone. Finding foods that taste appealing may be a process of trial and error. Some people who experience taste changes avoid their favorite foods to prevent the possibility of spoiling them for the future.
There are no medications that address taste changes. However, some studies have suggested that deficiencies in zinc, copper, nickel, niacin and vitamin A may contribute to taste changes. Do not take more than 100% of the recommended daily allowance. Remember, you should discuss taking vitamins or any other "remedies" with your doctor before you begin. -END QUOTE
Hope this may be of some help
Currently drinking a disgusting tasting coffee, so completely empathise!
I'm sticking to really bland foods, lots of pasta with creamy sauces and such like. Because they don't really taste of anything I think that helps them not trigger the hideous chemo taste as much. Also, I think spicy food can worsen the chemo-mouth.
Completely agree that the disconnect between smell and taste is really annoying.
I also find that some textures like salad leaves and shortcrust pastry feel really yucky against my tongue.
One of the chemo nurses suggested getting some gauze, soaking it in lemon juice, then wiping it around your mouth. I haven't tried this, but it might help.
My mouth hasn't been quite as bad this time as the first T (though still hideous) which I think might be because I've been really strict in my mouth regime. I started using oral thrush medication on the day I had chemo, rather than waiting for the symptoms. I've used corsodyl twice a day, salt water rinses 4 times a day, mucodis 3 times a day and the thrush medication 3 times a day! I feel like all I do is swill things round my mouth, but I think that it has helped a bit.
I reckon it'll be 4 weeks post my last T before I can properly enjoy food again, so will be booking a very nice restaurant for around then...assuming they don't scupper my plans by booking my surgery in as soon as that! Why don't you start planning where/what you're going to eat once you get your taste back so you have something to look forward to?
Day 10 for me too of 2nd T and my mouth still feels coated and most food and drink still tastes vile. Although I did get a little glimmer of taste returning yesterday. It's not pathetic at all to feel depressed about it. Food is a fundamental part of all our lives and when there is little pleasure to be taken from most things whilst we're going through chemo it is very hard not to be able to eat what we would like.
I still can't understand why my sense of smell seems to be more acute at the moment when it is so closely linked to the sense of taste. Food that smells wonderful simply tastes disgusting.
I'm going to try sucking frozen pineapple chunks today, I seem to remember someone recommending that before.
Supposed to be going to a funeral today but have to give it a miss as I just don't feel well enough and with my toe all bandaged up from the stupid accident the other day walking is a bit tricky.
I really hope your moth recovers soon. What would you eat now if your mouth wasn't bad and you could have anything you wanted?
Hoping you feel much better now - you really are having the most horrid time. it seems so wrong to have to struggle so much. My heart really goes out to you and I wish I could hug you in person.
In some ways you must be having quite mixed feelings at the moment - the good feeling about that your next chemo is the last one and the dread of having another few weeks of having to deal with your most debilitating side effects and praying that nothing else will 'hit' you.
It be will be the last one soon - and then you can begin the slow road to recovery from this awful thing. Athough I know, from your posts, that you still have some major operations ahead of you.
Great to read that your macbook made it through! At least you are able to access the forum and gain some of the support through your last cycle, that will make such a difference to you.
Accidents? Not as such, just forgotten keys, locking myself out, forgotten mobile, forgotten apointments and forgotten to close window in the darkness and switching on the lights - only to be invaded by about 40 wasps, who have their nest in the roof and thought my flat was their new nest..........
Huge hugs to you, Belle - and praying that you get all the support you need through your last cycle.
That's brilliant Charissecarson! It must feel amazing! Hopefully the good feelings will keep you boosted through the se's, but even if they're as horrid as usual at least you'll know it's for the last time.
Popkit50 - I have a little hole on my shoulder from walking into a door handle, not quite the hospital job that you managed, but I'm sure my fuzzy chemo-brain is to blame! Hope you can get replacement plates!
I've already had an LD flap reconstruction but as my new 'boob' can best be described as a B/C cup and my old one is a G and needs a reduction. I also need to have a large dog ear removed from under my arm which I will be very glad to see the back of as it's very uncomfortable. Then I need nipple constrution & tattooing and possibling fat grafting. I didn't have an implant with the original reconstruction because of allergies so there's more work than would otherwise have been necessary.
So sorry to hear what a rough time you've been having Belle, sending you a big virtual hug and many positive vibes to help you through. I'm glad to hear the end is in sight though, at least chemo wise. Are you going for reconstruction?
I hope the weather is as glorious in your part of the world as it is in mine today.
Thank you so much, all of you. Very much appreciated. I have been shaken by how much of a toll the emotional stuff has taken on me physically. I'm probably about a week behind which is annoying. Although it is difficult to assess as I know everything is culmulative so who knows how I'd have been under more normal circumstances. However, today my husband comes home after a week away (hurrah!) and then it's only one more dose to go before being done. At least with this bit. Very grateful I don't have radiotherapy to move onto but will be wishing those of you who do well. I have a fair bit of surgery still to contend with but hope to have that more at a time of my choosing. We shall see. And then there's the joys of hormone therapy. But even so, we'll all soon be singing 'Ding dong the chemo's done!'
I had my radiotherapy planning appointment today as my last TC chemo which was meant to be last Friday has been postponed and most probably cancelled due to peripheral nueropathy. My Onc was on holiday last week so will have a definitive answer on Wednesday. Anyway, back to radiotherapy. The planning scan was very quick. I must admit I was nervous this morning and wished I had asked someone to come with me but there was no need. All the radiotherapy staff were lovely. Into changing room, strip to waist, put on blue paper gown and straight through the other door to the simulator room. The machine looked rather daunting, a big dougnut shape, so not like an MRI scanner i.e. tunnel. Up on bed with rests for my head, rest under my knees and arms above my head, also with rests. Not uncomfortable at all. Staff explained every single step of procedure. Basically, drew on me with pen, then three tattoes, one on either side of each breast and one in between breasts. Staff left the room, went in and out of the machine three times, I just closed my eyes and you have to lie very still. Whole appointment took about 20 mins, 10 mins on the bed. The tattoes are TEENY TINY! I've just been upstairs to look in mirror, had to put my strong reading glasses on to see them. I think they are black but are honestly so small it's hard to tell. They are literally a "pin prick" size. No idea if they used uv light or not. Don't actually start until 6th October unless in the very unlikely event that my onc decides to go ahead with my last chemo then it will be later.
Belle, I've been thinking about you and thought something must be wrong as you've been so quiet. I know you had a rough time on FEC 4 so wondered if you're chemo had been stopped. So sorry to hear that you've had to cope with so much at the one time. Hugs.