just a quick question
Are anyones veins sore. Mine are and i can't really carry anything in that arm cos it pulls.
Thanks Maria x
My Hair looks a lot better too, now it's short. Just a pity the rest of me doesn,t. I've got through 42 to years without getting spots now chemo decided to make me look like a spotty teenager. Oh well extra make up!
I'm not feeling quite so bad now thanks - still a bit queasy but my legs have stopped aching now which is a relief.
Funnily enough I feel better now that DH has clippered my remaining hair off this morning. It was so patchy and looked dreadful - more bald patches than hair and it actually made me feel physically ill just to look at myself in the mirror. Now that it's gone both DH and my lovely son (who's 16) both agree that I look healthier and I don't mind looking in the mirror any more. I've also discovered that I have a really nicely shaped head!!!
Cheryl, the nurse was quite right - having FEC2 has made me realise how well I was feeling for the last week so I'll definitely make the most of it when I'm feeling more like myself again. Plenty of treats will definitely be in order - think I'll start making a list now.
The nurse who tended my PICC said to be sure to enjoy the good days, as you tend to have fewer of them towards the end of treatment.
Howz everyone doing?
Cheryl i,m glad you didn't have to wait too long to have your PICC flushed this time, nice to go and get some reasurance, but you don't want to be there all day. Do they not know you,ve got a life lol.
Jane i hope your nausea has subsided, hopefully comfort eating can resume very soon, and you can make-up for lost time.
I,m finding the SE'S slight worse than last time, but mentally i,m coping better. It,s only now that i realise just how anxious i was feeling during fec 1.
Hope your all having good days an enjoying the weekend, love to you all
Well only a 1 hour wait to have the PICC flushed and cleaned this time, and my name was top of the list. I have been partly reassured about the bleeding--probably low platelets and so poor clotting. I can take ibuprofen for pain so long as my temperature is normal. I have also been given a sleeve to put over it--long enough to cut in two.
So with that and improving platelets, I can hope for a decent week up to FEC3 a week from today.
Take the duvet and sofa time, everyone, it will get you through to the better days.
Jane I sympathise. The nurse said "You don't want to be reading those" to the list of side effects for neulasta. Having said that I think I have recovered better than FEC 1 this time and my body feels normal. (Day 14) Even my mouth has totally recovered with no rough patches on gums. It must do us good then. Duvet days are inevitable.
A work colleague came to see me yesterday and I pulled off my hat and said "have a look at this" and she burst into tears! So unlike her, but she said it was easy to forget that I have got a scary disease and the bald head just reminded her of that. I thought she came to cheer ME up lol x
Snuggle up under those duvets if you have to. Good days do arrive eventually!
Oh dear. FEC2 is definitely worse than FEC1. Might be the Neulasta I had yesterday I suppose as that can sometimes cause nausea, but I had a bad night and now feel quite queasy. Managed two rice cakes for breakfast and only had those because I needed to take the steroid pill with food.
I think I feel a duvet day coming on...
Sarah do use the mouthwash if you've got it as a precaution. I hope it proves to be not too serious. Otherwise rest is probably the best thing; difficult when you've got young children, I know. You can do more mothering from the sofa than from a hospital bed, so REST.
Maria I had a couple of really bad days this time too. I'm glad you feel better, but don't overdo things. Are you supposed to drink the cod liver oil or rub it in? I'm curious.
I went to choir practice last night, which I enjoy so much. During the break I said 'Is everyone ready?' and whipped off my scarf and cap and showed everyone my shaved head. Some of the ladies suggested I wear the wig next week so they can help me decide which is best. They were sympathetic but cheerful, which was so helpful.
It's a PICC line day today and I'm going to stand at the reception desk until I see that they have definitely registered me.
had 2 rubbish days - mush be the crash after steroids. I didn't get this last time - a bit of a shock really. Anyway am fighting fit today and had a great day.
Went to a friends house today who hasn't seen me since my hair started to fall out. When i took my cap off, you could see she was physically shaken and had tears in her eyes. She went straight to the cupboard and produced a large bottle of cod liver oil. She gave it to me and said 'that'll sort your hair out, it works wonders that stuff'.lol Bless
Sarah my gums have bled occasionally too, but it was only slight. I think it's only a problem if it,s alot. I just make sure i,m using plenty of the mouth wash they gave me.
Well it was a sofa day after all... Had that just stepped off a ship feeling most of the day. Feeling most pathetic.
Was a little concerned this morning as when I cleaned my teeth my lower gum was bleeding... thought I was supposed to look out for that sort of thing ? Anyway called the chemo unit as my gp wasn't available and the nurse I spoke to was very vague. First of all said if I lived closer (I am 40 miles away) to go in for blood tests... But said don't worry, try a softer toothbrush(I'm already using a pink Childs Disney princess one!) and go to my gp for blood tests if I'm worried. Shame that was at 12pm and the cut off for bloods is 11am.... Shall keep an eye on it and see if it has stopped later.
Thankfully a kind friend is feeding the boys tonight for me so I only have to do bed time story and bed......
Fingers crossed for more energy tomorrow.
Hope everyone else bearing up alright...
Hi Janipi, in some ways the suede head me is more recognisable than the one with straggly patches of hair either sticking up or lying lankly across my skull. Our house isn't warm enough to go around bald headed all day, but when the weather warms or my scalp toughens, I may ditch the coverings. It's going to take a while before I get used to the wig.
I was where you are last week, even without kids to get up, so you're actually doing well, Sarah. Stone fruit off all kinds, not just prunes, tends to have a laxative effect, so indulge freely in whatever type takes your fancy. If fresh is too expensive, dried usually works. Ditto figs. Popcorn and sweetcorn help some people as well and raw onion is another traditional 'remedy', if you can tolerate it. How about beans with sweetcorn and onion for lunch or supper? Just supply the family with gas masks. 😉
Diet alone may not do the job, but it ought to make the sachets more effective. I think suppositories are the next step.
Day 12 today and I feel sort of normal. I'm planning to take my dad out for lunch but haven't told him yet. I have learned the lesson not to plan ahead because sods law I won't be well enough. Enjoy the sofa Sarah. Hope things move along for you. If I recall it took 3 sachets for a desired result. Jane, I had a neulasta this time. I had chest pains but when investigated docs thought pains coming from sternum. It's never so bad if you know what's causing it. Anyway neulasta kept me out of hospital this time. District nurse who gave it said the GP told her to be careful with it because it cost 630 pounds. I'm honoured to be worth that much lol! I was allowed to take paracetomol for pain if I checked my temperature first. Cheryl, I have been parading around the house with my suede head. I'm getting used to it now and have a passing glance in the mirror every so often to check it really is me.
I sense a sofa day for me today... Managed to get the boys up, dressed, breakfast,packed lunches, sent off to school and I am pooped.... God I hate this... What's hard is I had the choice about chemo. Had my surgery, got it all out (fingers crossed), no rads needed, then the question of chemo. Up to you they said, 7% more insurance policy. Half of me feels like I'm being a winging cow, I'm lucky so many aren't, take it all what's on offer, and half of me wonders whether it really will make any difference at all. Just want to be me again and get on with the rest of my life. It's all pants isn't it........
After 3 days of powdered sachets of revolting laxative am hopeful for some kind of movement today, that's 6 days this time!!!! That is sooooooo not normal.
Anyway, thanks for listening, winge over, time to see what's on television..hooray...xxxx
And when are you entitled to leave sick to someone else to clean if not now? The infection risk, if nothing else, and you may need more rest. Hope it goes well.
Now that I've shaved my head I've put all sorts of wooly things in the wash, just to try to get the hair out of them.
My hair now seems to be coming out ridiculously fast and I have soem serious bald patches. I'm leaving hair everywhere, but as we have a black labrador who seems to moult constantly, I just blame him! I no longer need to shave my legs or armpits, but I still have hair on my arms and I don't think my eyebrows of lashes have been affected yet.
Having said that, I've just got home from FEC2 so i doubt much hair will survive that! No serious SEs so far, other than feeling odd and my mouth and fingers feel a bit peculiar.
I've got a neulasta injection to have tomorrow and I know that can make you ache so I'm not looking forward to that...
Ha! Said dog has just been sick in the hall so I can definitely blame him for that! And for once DH is home so he's clearing it up while I lounge on the sofa like Lady Muck.
Well, it's not a great job, but I've taken an electric razor to what remains of my hair, and the resulting suede head is an improvement. Whether it needs to be closer to keep the wig from slipping remains to be seen.
So far there is nothing very noticeable with brows and lashes, though I think if any have fallen out, as they do occasionally without chemo, they're just not coming back in. I keep trying to decide whether they look sparser, but can't decide. I'm not using mascara unless I go out, for fear of doing damage.
Diana - I think it's a good idea to either trim or reclipper your hair - it will neaten it up, take all the whispy bits off. But it does seem a bit of a pain if your going to lose it again(i hope not).
Has anyone started to lose their eyebrows or eyelashes yet? I,m dreading it. keep doing my make up with out mascara, just to see what it looks like. I look weird. Wonder if they'll let me lie back during chemo with ice cubes on my eyes. I bet i wouldn,t be the first to try it either lol.
Going to get some gaviscon tomorrow, this heart burn is driving me batty.
Well, I think it's now more true to say I have patches of hair (plus some grey fuzz) than that I have bald patches. I've scissored the few remaining clumps short and I think after a shampoo tomorrow it's going to be razor time for whatever is left.
Good morning everyone! Hope everyone is coping with the se's the best we can. I have wrecked a 3/4 sleeve cotton top in the wash so I have cut it and have 2 perfect coverings for my picc line. Gaviscon is a life saver at the moment. It allows me to eat and drink things I maybe shouldn't. Nothing can beat a nice tasty curry when the FEC se's settle down. Enjoy the sunshine today everyone x
Hi Maria, I had the bald patch that reminded me of my dad, too. (My son is developing something similar mid-30s, so far just thinning.) I have now reached the Mo Mowlam stage, so I think it's time for shaving. I was just going to cover it until it was nearly all gone, but I'm also getting tired of hair everywhere despite wearing caps all the time.
Still, I should be glad this is my main problem at the moment, right?
I've tried covering the PICC gubbins with a short section cut from a 'large leg' tubigrip, which is very snug but not too tight, I hope, and pinning or taping other cloth coverings, which tend to fall down eventually. Other suggestions are a section from an old pair of tights or the top of a pair of socks, but they'd have to be really big socks--I think the sock suggestion is meant for kids.
Hope everyone is feeling well today.
Boy do I know what you mean about seeing your Dad -I'm seeing mine every time I look in the mirror and he's been dead since the 1980's.
Sorry to hear the cold cap wasn't as effective as it could have been that was why I did not persevere because they could not find one to fit my head properly. The lady next to me on that first day also had the same problem. They are doing research into trying to improve things for us which is good but it won't help us any at the present time.
Re the heartburn, I was reccommended Gaviscon which does the trick but I seem to remember that somebody mentioned that Domperidone which some of us have been given for nausea also helps. It acts by helping the stomach contents to pass through a little more quickly.Good Luck with whatever you try.
Love the drunken barber references by you and Cheryl, and, as you have hair expertise what do you recommend re cutting and clippering. My hair seems to be growing again but very wispy and patchy, should I use the clippers again or just let it be. Some of the posts have said that the Tax will make it fall out all over again. Advice please.
Diana - nice to see you back
well - managed to get through 4 days se's ok. Got really bad heartburn, does anyone know if we can take anything for this? Also my veins are a little sore - hope i can still have chemo in them next time.
Cheryl - I am a barber and even i look like i,ve had a cut from a drunken one. Even worse is, i've got a big bald patch on my crown where the cold cap has not worked. Every time i look in the mirror i see my dad - scary. Having to wear much more make-up to stop me looking like a bloke with male pattern alopecia lol.
Sarah - that's a brilliant idea to let the kids paint your head. love it!
hope everyone's still coping
Love Maria x
Nice to hear from you Ragamuffin. I look like I've been to a drunken barber for a short back and sides. Well, I haven't got round to looking yet this morning.
Hi Feccers and Taxers
Haven’t been online for a while – so much to read and catch up on and now I can’t remember half of what I’ve read. Sounds like there have been some bed times over the past week but mostly seem to have settled down now. It looks like we are all still pretty washed out but just about able to cope.
*Cheryl- glad you got over having the PICC in and then the cardiac test but how awful for you with the ? fainting. Glad you are feeling better now.
*Sarah- glad your little boy is starting to realize you are still his same Mummy and is coming to terms with your lack of hair. How clever of you to come up with the painting idea. Have you tried Movicol for the constipation- it really does work- ask your GP or the hospital to give you some – I think you can also buy it over the counter. I was also told I could take Paracetamol for my headache if I needed to. My white count was pretty low but they went ahead with FEC 2 thank goodness- but must have told me twenty times to check my temperature. Good luck with those results, I am sure they would have kept the tissue samples.
*Peachez- hair out for the birds what a great idea- it’s too windy where I am, I tried some of it but it just blew away. When my daughter was clippering my hair off she said “Mum there’s still quite a lot at the back do you want me to leave it?” I said “no get rid of it all” She said “you could have a comb over” and with that we both collapsed with laughter at the thought of it and were helpless for a few minutes. It was great to have such good laugh with her about the side effects of BC. Glad the motilium suppositories are working for you.
*Janipi – hope the chest pains are easing- that must be a worry for you and you don’t need anything else to cope with.
*Maria- loved the post about your son whisking his girlfriend upstairs so you wouldn’t have to be seen- sorry to hear about the car. I’m really envious of your lack of waiting- my hospital was short staffed and I had to wait for four and a half hours after my blood results came back before there was a chemo nurse free to take me to a chair. I left home at nine o’clock and didn’t get home until seven! Hopefully FEC3 won't take as long
*Sophie- I must have lost my sense of smell because after the initial chemical smell of the urine in the first 24 hours after the FEC I don’t notice anything. I am paranoid that I stink and keep sniffing at myself- as I live alone there is nobody to tell me. I’ve asked my daughter but she has said she doesn’t smell any thing either. I drink what seems like gallons –am ploughing through the toilet paper at a considerable rate of knots and up several times a night. Glad you’re feeling OK post FEC 3- halfway – that must feel good.
*Den42- Glad to hear that the cold cap is working and that so far you are feeling OK
*Janet- how are you doing after your FEC2?
Love to everybody and (((hugs)))- hang in there - check your temperature –drink lots- and keep well! Diana x
Sarah, glad you're feeling better, and so happy to hear your little one is coming round :-)))
PS. I got Motilluim suppositories from GP, great relief!!
Sarah - What a lovely idea to help your boys accept their mum's lack of hair. Hope you all have fun with the paint.
I like the painting idea, Sarah. It's great that your littly is coming to terms with the change to his mum. They could turn you into a painted Easter Egg.
Hello everyone.... Up and about today after 26 hours in bed!!!! Dreadful nausea with this one but I managed not to be sick. Hooray!! I asked about the paracetamol and was told it was fine. I had to take something, my head felt like it was exploding. Now I just have to deal with the constipation! Gross... I have taken senokot 3 days in a row and nothing!!!!!!!! Last time I went 5 days, it's just wrong...... How many prunes can a girl eat for goodness sake. Improvement with the 5 y old, he has progressed to stroking my fuzzy head twice now and I have promised the boys that when it's totally bald they can paint it.... Whatever they want, kids paints that I can hop in the shower and wash off after. They think that's a pretty cool idea.
Hope everyone having a nice weekend, shall venture out for some fresh air later me thinks. Xxxxxxx
In some ways I'm surprised that no one has suggested PICC lines, Kaz and Sarah. I can't say I'm a great fan of mine, and after FEC1 I wouldn't have asked for it, but I've never had anyone have to poke around for my veins. One point is that they use the PICC for everything, including blood samples. Seriously, if this is likely to be a problem every time, maybe you should ask.
Hi Sarahbeara all i can say is SNAP...... had fec 2 on Thurs and after 4 painful attempts the nurse finally got a good vein!!!! My se's are worse this time too!!!! Sending you hugs and anyone else that is needing one.....
Sarah, phone in and ask, I was told not to take it too, but checking would make it clear what your unit does.
Well done to all 2nd Feccers this week, mine was a lot better after steriods and anti sickness meds were doubled! and good luck to those to come next week.
It's interesting that we are getting conflicting advice about pain killers. I was told not to take anything if I had a raised temperature, but the person I spoke to was worried about ibuprofen causing stomach bleeding. (I am always careful about taking it after food in any case.) I was told I could take paracetamol (obviously not ibuprofen at that point) for pain after the PICC was inserted, but also to apply warmth like a hot water bottle.
So perhaps you should check your temperature, Sarah, and then phone your unit to ask what they recommend. We have to take so many pills I've tried not to take anything more unless I really need to.
Have a good weekend, everyone, or the least bad one you can manage.
Oh dear Sarah, poor you - I've got FEC2 coming up on Wednesday 😞
At FEC1 (and in my chemo instruction pack) I was told under no circumstances should I take aspirin or paracetamol as they work by reducing your temperature so would mask any signs of infection. It's a good point - I came within 0.1 degree last week of being hospitalised due to an infection but although I was in pain I didn't feel ill at first so might not have realised how serious it was if it wasn't for the temperature. My cellulitis could then easily have lead to septicaemia very quickly indeed.
I was told that if I have a headache I should take my temperature and then could take ibuprofen, but only if I really need it.
I was prescribed codeine for the cellulitis pain which is fine to take (apart from its SEs!), but I seem to remember reading somewhere that you shouldn't take codeine for headaches...
Can you get hold of one of those headache cool packs?
I hope it doesn't last too long for you, don't you wish we could all just hibernate and sleep it off for a few days!
Hi Sarah, when I phoned to ask a couple of weeks ago I was told paracetamol is ok. I hope the SE's wear off quickly, but the chemo nurse (did FEC2 & looked after the line today) told me that there's no way to predict when you hit the wall, but some of the SEs build up. Could be the change of anti-sickness as well.
Fec 2 all done.. Home in bed with a stinking headache, can I take paracetamol I forgot to ask?? Found the experience worse than last time, nurse couldn't get a needle in, after 3 painful attempts finally it was ok. Was given different anti sickness so fingers crossed it works....Se's seem to have come on a lot fasternthan last time, only finished chemo at 2pm, by 4 I was home in bed..... Bleurgh......
We've got buds now, but not opened yet. Perhaps the next sunny day will do it. It's too stormy to spend time in the garden today, especially with the big branches drooping over the hedge from neighbouring gardens.
I've moaned elsewhere, so I won't repeat it here. I'm glad the waiting is better at your new hospital, Maria.
Had second fec yesterday, at new hospital. It was much better in terms of waiting - non at all. I was there 3 hours in total and i,m having cold cap. FANTASTIC. Wasn,t over confident with chemo nurse though. He was very nice but i didn't think he was very experienced with the needles - he was really messing about. Made me very nervous.
Anyway, glad to get that first day over with, I seem to feel dreadfully poorly about 4 hours after chemo - start being sick, and can't take the meds for another 4 hours after this.
Today i feel great - probably the steroids. long may it last.
Have had bad news today, car went into garage and it,s going to cost £1800 to fix. Can really afford this while off work! Makes me feel as if i don,t have a choice now. will have to go back in,if only for a few hours a day.
What a lovely idea for the hair! I kept the chunks I pulled out and stuffed it in a tesco's bag. I shall also donate. I'm sure the birds won't mind the grey roots. Cheryl, not a sign of a snowdrop here. They are through the ground, but no flowers.
I think we're a bit behind you, but then I haven't been up to going out to look for a few days, and I haven't noticed from the window. The snowdrops should be up now, and the crocuses should be on their way. I must nose round the garden.
prehaps a bit optomistic for birds nesting, but just felt better than binning it! Mind you my Snowdrops are out and the Daffs and Tulips are well on the way in the garden - we've even had sunshine all day today 🙂 P x
Do you reckon the birds have started nesting? I haven't got a lot left, aside from the bits sticking to everything, but I'd certainly be willing to help the dawn chorus.
Sarah, sorry you're 5 year old is having meltdown about your hair. Didn't know whether to laugh or cry ! My 18 year old tried it on today - "can't we make it all just go away?" I wish! HA! Hope you get the sample thing sorted out asap.
Day 2 Fec 2, and most of hair is on the garage roof for the birds. Will not go bear headed now, even round the house, but can't quite get up the guts to get the clippers out. OH has promised to shave beard when it does go...
Have chemo brain, too many posts to remember! so (((hugs))) to all expecting results or getting cocktails ... P xxx
I hope you did show the kids, Sarah, on the principle that things are less scary when you know about them.
I'm staggered about your sample not being sent off. Someone needs to have their hand slapped.
I remember my kids getting upset when their dad would shave his beard after growing one for a few years, as he did a number of times. After a certain age this reaction simply stopped. Then whether they were embarrassed by a bearded or clean-shaven face depended on whether their friends' fathers were bearded or not. The problem is that there aren't enough bald moms around, at least not that we know of, for kids to see it as natural.
Morning all!! Hope everyone ok....
I am just back from the mammoth school run, followed by a quick trip to tescos, then doctors for more blood tests.
Luckily my GP is married to one of my best friends, we even go on holiday together and I am so lucky as nothing is too much trouble for him, ( he will come out and seem any time day or night if I have a problem).... Anyway.... While I was there I mentioned that I still agent had a definitive answer about my herceptin results, at my hospital appt the other day the nurse who was going through my se's etc said that the seemed to recall my oncologist saying he was sure it was negative...... Something didn't feel right so after I told my doc he immediately picked up the phone and rang histology at the hospital. Guess what!,, no record of my sample ever being sent off for analysis!!!! My mx was on the 14th november, the results apparently should only take about 5 days to come back... Thank goodness I queried it!!! My only concern now is do they still have the original tissue sample to send it off for testing?! Unbelievable!!! Not a happy bunny I can tell you....
Just waiting for blood results to come back now to see if I can actually have fec 2 tomorrow or not....( on my sons actual birthday btw...... ) the same son who still screams every time he sees my head..... As oppose to the other son who asked me at school this morning to take my bandana off so his class could have a look!! Chalk and cheese! Xxxx
Here I am at day 6 FEC2, and I think the best description of my hair is a rather drunken short back and sides with advanced thinning. The grey hair seems to be hanging on longest, of course.
C'est la chemo vie!
ETA--Actually it's day 7, isn't it? Sigh.