hi gail, i'm not to far from you i'm in dudley west mids, your lucky to get on look good feel better, the closest to me is wolvo and they're fully booked until march, so got to wait for cancelation. but enjoy yours
Good morning. Day 4 post FEC 3 and defintely more tired this time, for second day in a row I have gone back to sleep after the kids have gone to school, nice in a way but find it harder to get myself going the second time, worn out after a shower. Hopefully things will start to pick up tomorrow/Thursday when hopefully the fog will lift.
I find my eyes quite blurry in the monrning, came down today and switched on this Morning and it has taken about 10 mins before it really feels in focus - does anyone else have this? I'm fine reading and typing, just seems to be distance which is strange for me as I normally suffer from age related close up stuff being blurry.
I must force myself out for a walk today if only 5 minutes.
Re food, I am also sticking to the pregnancy principles and avoiding pre/pro biotics and we do have takeaways occasionally but I am avoiding them between days 10-14 and making sure they are from restaurants we trust. I am eating lots of spinach, greens, more red meat than normal to try and boost red blood cells.
I am going to one too! Can't remember where you live.... We can compare notes later on how well we feel after! Hope its going to make a difference to me I'm nackered with a sore throat!! Eyes ok so far but have a crack in the corner of my mouth which really hurts!
AMD66 I love your poem
Mazg commiserations regarding your delay in chemo. My second FEC was supposed to be last Thursday but this was delayed due to hospital admission. Saw Onc today, bloods are much better so having chemo Wednesday. Also had pic line in today. Arm really aches – is this usual?
Suzee64 sorry to hear of your injuries. I was interested to read what you said about diet as I have not been told anything.
hi pumpkins, so many post since i last posted, well 14 days post 2 fec, and feeling good apart from injuries from falling over at work, but wasn't working was actually a customer doing my shopping. got a big red lump just below elbow thats really sore and red hot, big bruise on knee and ankle, and stabbing pain in ribs, wasn't able to sleep at all last night, so running on empty now. just hope i can get some sleep tonight. should i phone unit and let them about injuries, not sure whether i should or not.
was told re diet, no live culture yogurts, unpast milk or cheese, wash all fruit and veg, more or less pregnancy diet.
hope every one is keeping well
big hugs xx
A belated thank you to Jayne M Gail 65 for welcoming me to the site...back on Halloween. And i am so grateful to all The Pumpkins for your contributions- although I haven't been posting I have been reading and willing you on...and you are an invaluable support to me even though I don't post much- the trouble with me once I start....
Did anyone else have a breast reduction with a lumpectomy before chemo?
I did, so although the scars are a little like Frankenstein's monster and there is a reduction in sensitivity, I tell the world that the new improved tits are a silver lining to this cloud...
Well I survived the first round of chemo without the early nausea thanks to all the meds but there were lots of other problems; hoarse throat, cracked lips, thrush and ulcers in my mouth then bone pain as the injections kicked in as well as the not quite right stomach... and managed to be positive...most of the time!
Remembering Samantha in Sex in the City, I coped with my hair loss on day 14 by getting rid and moving into "Christine Hat"with scarf wound round and sometimes longish blonde bob wig ( male friend thought I had had just been to the hairdresser!). No tears this time, I had already rehearsed my plan and sobbed when I tried on the wig prior to starting chemo. Now I sport a rapidly thinning GI Jane but it is better than having to wear a hat to catch the hairs before they clog up the vacuum cleaner or even make the yoga class sneeze ( I managed one last week). Yes I'm being positive...
THEN today the nurse taking my blood prior to 2nd FEC tomorrow missed...the second collapse in a row and the tears gushed forth!
I guess that going back after having a lovely normal week is bound to affect my emotions and aim so pleased when I read about others having those moments.
Chemo at home tomorrow so going to walk by the sea before the nurse arrives between 2 and 4 and round two starts...
Goodnight Pumpkins sleep well and keep posting the good the bad and the ugly and who knows I might even manage to find a way of changing the image (I use an iPad) before I post again!
Love that poem Amd66, I changed my profile picture to mother russia you can see it there or google russian propaganda posters.
How are you doin Alfie, better out than in I say. I reckon the chemo effects our brain in ways they maybe dont know. I think its weird they gave me loads of info on physical side effects but bugger all about the mental ones. I think they need to do both. Psycologists working with Onocologists more closley from the start to support us in what maybe the most stressful thing we will ever experience.
I went down to the centre today and got a back massage, it was so relaxing that I came home and slept the afternoon away so much for my plans to sort out my daughters toys and get rid of all the broken stuff and toys shes outgrown. In the words of a very famous strong woman, tomoorow is another day. Not planning on making any dresses out of curtains yet
Hello all -
I'm a newbie here - was diagnosed in July with invasive lobular cancer, had 2 lumpectomies in August and started my 6 cycles of FEC on October 2. Was due to have the 3rd chemo tomorrow but it's been postponed for a week because my white cells are low and my veins are collapsing. I'm getting a portacath put in on Thursday - has anyone had one of these? Did it help?
catzoo , good luck with the tooth,
Jayne, my sickness tabs are different, metroclopramide. i took 3 per day after first cycle, then thought i wasnt feeling sick so why did i take them? i obviously didnt listen to the nurses, so i only did it for first 3 days.
also realised you are taking steriods at different times, i take the whole lot together as soon as i wake up, is that ok?!
want to look at mother russia,cant picture what we would look like.
found nice poem about hope,
its magic and its free
its not a prescription
its not i an iv
do you know what hope it
its reaching past today
its dreaming of tomorrow
its trying a new way.
love to all
Almost 2 weeks after my second FEC and looking forward to the 'good week'. I was still very nauseous last week, and I must say that one thing I will never take for granted ever again is my sense of taste. I've found this horrible taste/no taste worse than the lack of hair ! I would never have thought this before all of this started.
Talking of hair- of lack of !- I'm finding the wig to be fine. I only wear a scarf at home for a bit of relief.
Today I had to go for a follow-up MRI scan. Getting quite used to this now- 3rd one in a 6 weeks. I'm bringing my own music CD next time ! Getting fed up of the standard one! I didn't have my wig on went I went in- I reckoned the staff were used to it. But as you've all been saying- catching a view of yourself in the mirror- with bald head- Yikes !
Evening Pumpkins - How many days after chemo have you carried on taking the domperidome tablets - I take the steriods for anti-sickenss, they give me 3 days of those, 2 tablets twice a day. I havent been sick at all but for the last 2 FECs have taken the domeridomes for 5 or 6 days, not sure if I need to but scared not to in case I do get sick. I have tended to forget to take all 4 on the last couple of those days and hae been fine.
Hope you are all ok today x
Hi Pumpkins.. People seem to be doing ok for now which is great. I am feeling fine - ready for my 2nd FEC on friday. Had a nice weekend, went to the rememberance parade on Sunday, then went to see Skyfall which was fab. Feeling almost normal right now.
But - I broke a tooth in half this morning eating my bran flakes. Got a dental appt tomorrow. Then thought best check with the chemo unit, so I got to go in there first to get bloods checked, and any dental work can only go ahead if bloods are ok. As I was 0.4 neutrophilic last thursday lets hope it is improved. Surely they can't leave me with a stinkin rotten black half tooth in my mouth? At least its not hurting.
Back on the soup diet now until tooth fixed.
Am moulting body hair - I shake my towel over the bath after drying myself and it looks like the dog has been in there. Also thinning from my head. Using a very wide toothed comb once a day, and its full of hair. Scary. I used the cold cap, so really hoping it stays around a while longer
Nice to catch up with everyone!
Day 11 post FEC 2 and feel ok today although the massive bags under my eyes tell a different story!!
Had an ok weekend although had a massive emotional breakdown on Saturday night and completely lost it with my poor husband who had to look after a blubbering wreck! I went out to the school firework show and I think I over did it and ended up feeling like there was no way I could get through all this.... Luckily I feel like I am coming out of the chemo fog now and feel a bit more posiitve...
Had really bad pain in my bones on Sat night as well which my oncologist warned me might happen when the white cell stimiuatuing injection kicked it, ouch that really hurt
amd 66 i know what you feel about feeling guilty not being at work. Before all this I never really had any time off sick so now I feel incredibly guilty sitting around at home not well but not really really ill. I'm also not really very good at sitting still and resting!
Little bear glad the nausea is a bit better this time, hopefully you'll be back on the hot chocolates with Ribby soon!
Have a lovely day everyone
Anne: thanks for coming by the Pumpkins too.
Jayne m: glad you joined the Pumpkins - we'd miss you if you were Sept thread!!
Lynseyp37: good luck for FEC 2 tomorrow.
Ribby: enjoy the hot choc -sounds divine!!
Raonaid: that made me laugh!! I knew I reminded myself of someone when I looked in mirror - now I know who!!
Am excited as less nauseous today - this day (6) on 1st TAC I ended back in hospital with sickness! Can't quite manage a hot choc, but Ribby you can have mine!!
Have the best day you can Pumpkins xx
I do love my anabandana head scarf its very comfortable but I cant help thinking it reminds me of those propaganda posters of woman urging their felllow comrades to get the harvest in for Mother Russia, just call me Babooshka
I take 2 steriods at 8am and 2 at 1pm and still spent most of the night awake! Guess it is a bit of me as well as I am not the best sleeper and often wake in the night, just not for quite as long..... Anyway, finished the steriods today so hopefully sleep will return tomorrow.
thanks everyone sorry for delay been to see skyfall - fancied a bit of daniel craig before fec 2 on tuesday! glad u are ok jayne after 3rd one. the nurses told me not to take steroid tablet after 4pm as it would keep u awake so i have three tabs 8 12 and 4...
i was given ducoslate?? or something similar from the chemo ward. have kept up with 2 tablets each day, ask next time and then you wont have to pay for senokot. i was given them with sickness ,steroids etc when i left ward after first session.
and ribby, i should get nice coffee or hot chocolate with work colleague who doesnt work mondays.
as for today, its gone now so i wont spend any more time thinking about what i could have done about it xx
and oh ribby, i was also told about the probiotics, i think the danger period is our days 10-14 when we could get infections so maybe they are safe at beg and end of cycle?? do you wash all your fruit and veg too?
Hi Anne, welcome to our thread, like you I started at the end of September but decided to join the Pumpkins as I wasn't sure if there would be a delay and I now feel at home here :-). I had FEC 3 on Thursday and I have been more tired this time but only had 2 hours sleep Thursday and 3 hours Friday so will be asking onc for sleeping tablets for steriod days next time. Other than that no other SEs have been worse than normal and I have been quite lucky in not getting any sickness. I avoid constipation by taking 2 senakot tablets at night from Friday until I stop taking sicness meds and that seems to work for me.
Hope everyone is having a good evening and good luck to all having chemo next week.
Pleased to say the Bran Flakes have finally taken effect!
Busy couple of days, bike shopping for Princess so had a lazy day today - Princess was at her dads so have chilled out! Will be ringing my GP tomorrow morning to see if i can have alternative indigestion remedy - i was awake most of last nite
Hello to amd66 and perkinjeff... x
Im slightly confused as to probiotic stuff. On my diet sheet, ive been told to avoid any probiotic products, yoghurts etc but i notice perkinjeff is having yakult & fifirosalie, you mentioned about probiotic supplements....
Im finding ginger ale is great for the nausea (which i think is caused by the indigestion rather than a side effect of the chemo) & although i thought my tastebuds were on their way out, they seem to be ok (for now!). Still cant taste chocolate but managing cake & biscuits just fine!
Looking forward to meeting my friend in a local coffee shop on tuesday for a catchup & huge hot chocolate - squirty cream, marshmallows & maltesers on top - well i have been told to eat fattening stuff!!
Glad to hear everyone is doing well... xxx
lynseyp i echo the above also worth trying ebay, search for buffs, or morfs, they are only a couple of pounds, in 15 colours, like a large elastic band as someone else says, but you can tuck the end under at the back of your head, makes a cap which isnt clingy and very soft.
ive just gone through some of the older posts, and thankyou so much it was nice to read about others having worrying days, and just getting through them.
hope you are happy for me to add in the odd comment. i havent had problems with taste buds but so great to read your ideas, cos you have already been there,
big hugs to all esp those a bit sad like me xxx
hello to catzoo, gail, ribby etc. i suppose im half a pumpkin as i started end of september and am nearly on fec 3rd cycle so simiiar to you. am glad to read that your friend didnt find 4/5 quite as bad, i think ive built it up in my head that we will be unable to do so much and the tiredness will be awful,
i havent read all the thread but what have you found for the crappy days? i was also busy working nearly full time in a school and i think i just feel guilty being at home so much. i dont feel bad enough to be in bed but spending too much time thinking.
please post any of your tips, they might have appeared before, love to all
Any ideas for baldie bits on top - I am looking for something that I can wear to go out for the evening, not wig as hot and uncomfortable. I still have a ggod covering of hair other than the top - was thinking hairband but the thicker ones wouldnt work as i dont have long enough hair to cover the bottom and I'm not sure about the hard ones as they pinch my head - awkward arn't I.
I don't want anything that covers all of my hair as I like the hair I have :-)
Ditto Buff - I got a merino wool one which is soft Nd cosy and you can wear it a number of ways. Just google buff, or use their amazon shop for best prices. Annabandannas are brill too. I ordered three this week, different styles, and really pleased with all. If you're unsure what to get, I'd recommend calling them. They had to call me because I didn't put my whole address on web form, and the chap I spoke to was absolutely lovely. They started the business because his mother in law had chemo, they make most of the products themselves, and try to keep prices reasonable. I'm sure they'd chat to you and advise what to buy, and also sure they'd let you return stuff if not happy with it.
My wig looks lovely, have had lots of compliments on it. Even got a compliment from a colleague who didn't know I was having chemo, and just said "your hair looks great, where did you get it done!". Made me feel great, I told her the truth and that it was the best thing she could possibly have said. Trouble is, I just can't be bothered with it at the moment, head is too itchy and sore, and I'm too irritable. Gonna save it for when I go back to work And special occasions I think.
Hi Pumpkins! Quick post before I try to catch a ray of fresh air despite the nausea thing!
Raonaid; glad you had a good time at coffee morning - sounds like such a good thing.
Perkinjeff; welcome to the pumpkins!
Chartor; what a rough time for you! Hope they stay away and that you can recoup a bit of rest now.
Lynseyp37; I got one hat from amoena for going out when I don't feel like a wig! Just called 'wInter cap' I think, & it's warm & does the job but just got one as it's pricey!! My annabandana's are the staples!
Hope all pumpkins have a good Sunday xx
I generally use a scarf tied at the back but then use a buff in a different colour, have a grey/black one that seems to go with everything, scrunched up, which i wear on top of scarf, at the front, Like a giant elastic band i guess as the buffs are soft cotton but slightly elasticy. It helps the whole thing feel secure and bulks out your head at the front a bit because you can feel a bit flat headed in a scarf. The buffs are great at night when your head gets cold and generally very soft material and light. Website called 'thats charming' have some nice cheap ones.
just wondered if anyone can recommend something to wear outside other than wig. took the plunge yesterday and shaved hair off but wig so scratchy and tbh i dont like it but what can i wear when i pop to sainsburys!! would like a nice hat / scarf type thing. have looked on annabandana but some look like there would be a gap at the front...
Welcome to the Pumkins perkinjeff. I find tonic water and strong crisps help too - cant deny to odd glass of red wine helps (only at weekends of course), I am sure my body has enough poison to deal with but some of lifes pleasures do us good and I have the full support of my BCN on that one!
I tried the oncs recommendation of letting 1/4 of a solvable vit C tablet dissolve in my mouth (four times a day) and that helped and guess heps the immune system at the same time.
I did have a better nights sleep last night despite the steriods but having only managed 5 hours in total over Thurs and Fri nights, I'm not surprised.
Enjoy the sun today girls, nice to see it shining on the Rememberance Day Parade - those are the brave guys!!
What a difference a week makes! The day after my first posting I ended up in hospital for a week! I had been suffering a lot of back pain which suddenly got much worse. Transpires I have gall stones which I wouldn’t wish on anyone. I ended up in the Macmillan unit of our local hospital and had such fabulous care. Everything is currently under control after having IV antibiotics but if there is another flare up I will have to delay chemo and have the gall bladder removed. Here’s hoping that I can get through until the end of February. I have had to go on a very low fat diet so no choccies over Christmas! I was supposed to have second chemo on Thursday but this has been delayed – I find out when I will be having it on Monday. Pic line was also supposed to go in last week and that hasn’t happened yet. While in hospital I lost most of my hair so I had the rest shaved off yesterday. Feels really weird. Feel OK now although very tired.
Hope you are all getting through this OK x
Hi - I started chemo in October so I am a pumpkin too but this is the first time I've posted - now all the hair has gone I do indeed feel like a pumpkin with a very round face!!!
thing that are helping me with side affects; eating every 4 hours!!!, yakult, activia yogurts, sweet chilli hula hoops, a big mac and frys!, small glasses of diet stimulation drinks
Fifirosalie I 've used this stuff called Anbesol which is an antiseptic/ anaesthetic liquid that you dab on mouth ulsers it really takes the pain away. I too am making the most of my good week and met up with friends at a coffee morning in aid of the North Highland Cancer Information and Support Service. Its a charity set up 5 years ago cause a group of people got together up here in Thurso and thought that the Maggies centre down in Inverness is great but its a 6 hour round trip for us. I helped out in their first year by designing their logo which I am really touched that they are still using and did their books for them, I could really have done with your help there Twinksmum as maths is not my strong suit. They've really gone from strength to strength and offer free massage and other therapies as well as one to one couselling, info centre and group support meetings. Its a shame that they have to survive on charity donations they do such positive work . It felt good to get out and chat with friends about other stuff, I felt normal.
Is lovely day here in Somerset, have walked dog in park and cycled into town for paper and bit of shopping. Feels like I've climbed a mountain though. Defo seem to have lots more energy this time round, am on day 10 now and keeping my fingers crossed it doesn't all go wrong on day 12 like last time.
I have really sore mouth now, appetite not too bad but just can't face chewing stuff cos it's so sore! Been sucking strepsils to numb it, which works for a bit. Also have cold sores, and very sore down the other end too! Found some sudocreme at back of bathroom cupboard, daughter is 12 now, so it's been there a while, but seems to have soothed things.
Feeling really low today, just fed up of taking meds and still being niggled by all these side-effects. Cried this morning when i opened a smal parcel from a work colleague - it had a hand knitted christmas mouse (so cute i may change my profile pic to it) and some special tea bags. Gonna try and do something creative to cheer myself up, usually make my own Xmas cards so now might be a good time to start.
Thank you Fifirosalie. Will certainly add in the supplements. Having a Hickman line put in on Tuesday ready for 2nd FEC on Wenesday so hope this works better! The doctor has upped my filgrastgot to 10 days. husband is doing th blood thinning jabs for me so can do these as well. i am taking a lot of comfort in he comments you all post, don't feel quite so 'different' as we are all going through this awful thing together. hair went today and am trying to get used to wig. agree wih you all about fresh air, might go to the coast for the day, try and blow the chemo fog away!
Little Bear, I am with you with the weeping. If anyone is sympathetic I cry all over them.
in a way I am lucky, took early retirement in July - lots planned wih my husband, dog and caravan, and then found he lump 4 weeks later! But at least I don't have to try and cope with a family like so many of you. How do you do it? You should be so,proud of yourselves and your husbands/partners be so proud of you too.
we will beat this- wishing you all a good week xx
I havent been sick once in three treatments so guess I am really lucky in that regard and I havent gone off food either - this is typical of me, I am over-weight by quite a bit (need to lose about 3.5 stone) which at 5' 2" is not a good look. Most things that cause people to lose weight have the opposite effect on me, stress - on it goes, breastfeeding, on it went, chemo, on it goes too!!
I shouldn't complain because I know how much I would hate to feel/be sick but its the irony that gets me everytime, oh and of course, 5 years of tamoxifen - side effect, weight gain, joy :-) Again, I should think myself lucky that I can take a drug that may prevent a recurrence.
Did the post cold cap hairwash this morning and it wasn't too bad, a fair bit came out but probably less than usual so hope it is slowing down, I reckon I have lost about 30-40% of my hair but hard to tell, definately small bald patches on top and back so they put gauze on those bits so cold cap didnt give me frostbite.
Hope you are all climbing out of the fog, I slept 2 hours chemo night and 3 hours last night, wonderful steriods but I know that pattern now and I will crash and burn Monday and Tuesday - going to make the most of having some energy over the weekend.
Morning Pumpkins, lots of posts to catch up with since yesterday morning, so many emotional & physical ups and downs on this roller coaster of ours.
Day 4, 2nd TAC here & nausea still lurking - eating a struggle this time which is bad news as lost half a stone last time!
Most of my hair went before 2nd chemo as TAC bit vicious in that regard. Just a few wisps left now! I do a blog & put a pic of me nearly bald on there, think I'll do a 'complete' one because it IS still us inside there somewhere. Still a shock to catch a glimpse in mirror though as brings reality home, and slapped some make-up on yesterday & had a wee weep under the bedcovers!
Ribby, it sounds like a cliche, but am sure it's true, that the 'best' person will accept you as you are. Big hug to you today though because it's hard to think anything positive when we feel this ropy ....
The first days post-chemo are surely the worst, and I'm grateful for seeing those of you a step ahead emerging from this cycle. I can't wait for 'happy week' and tea, scones, jam & cream which is how I put weight back on last time! Going to order a cashmere beanie today to cheer myself up!!
Here's to another day of 'getting through'! Saturday thoughts to Pumpkins one and all xxx
My exemption card only took 8 days to come through but I'm still battling trying to get a rebate on the Pre-Pay certificate I took out after diagnosis because no-one told me I'd be exempt.
Still no nausea so a great fan of Emend - only snag is I can't seem to get to sleep before 5am and am awake at 10am! Saw my GP today and have been given a 3 month Unfit for Work certificate, mainly because I rely on public transport, work with vulnerable clients in crisis situations and there is a lot of TB type infections in the area.
Hair is now really beginning to fall out but there is still enough to comb over at the top!
Oh and I've got cellulitis in my armpit and lower back so 10 days more antibiotics
Are you paying for prescriptions? I know drugs from the hospital are free but did you know you can get a five year exemption on prescription fees? Not sure about anywhere else but its not very well publicised in my neck of the woods, but if you are having treatment for cancer ask for an exemption form from your GP. Takes about 4 weeks for an exemption card to arrive in the post.
Well I managed to stay awake during the film, it must have been good! It was actually really good to get out, I wore my wig though which I still really hate and kept imagining people must be able to tell... Still I enjoyed myself and ate too many rolos!
Ribby hope you get your indigestion sorted soon, it's a horrible feeling isn't it.
Lynsey I know what you know about the whole eyelash/eyebrow thing, I'm relying on my mascara at the moment. I'm hoping to go to one of the look good feel good sessions on Tuesday and pick up some top tips. Before all this I never really wore makeup now I seem to be plastering it on! I'm hoping someone is going to tell me how to do it properly!!
Night night xx