Hi again everyone
Hope you don,t mind me posting again so soon.
Today my Mum and I went to a place called Fethiye which is a 1.5 hours drive away. We went for a bit of retail therapy. (Its the nearest large town to where I live).
We had such fun, doing girlie stuff (even tho I,m 55 and my Mum is 82 LOL). Came home absolutely exhausted though and I know I,m going to pay for it (financially LOL) and healthwise. Tomorrow I will be a wreck but it will be worth it to see the joy on my Mums face at us having fun together.
Avonlea - last year I had terrible problems with mouth ulcers. I had to use a babys toothbrush. This year however, my problem seems to be nosebleeds. Anyone else have this problem??
Lots to read today - sorry not been here since Sunday as still rather tired after 2nd FEC a week ago. Not sure where some of you get your energy from. I’ve slept a good part of the day and then watched TV most of the time. Thankfully my son showed the vacuum to to the living room this morning so I had a tidy room to sit in. I know what some of you mean about keeping the place tidy.
As someone who unfortunately has suffered with depression and has taken both diazepam and prozac in the past they are different drugs. Diazepam is a tranquillizer also commonly called valium. It has been around for many years and can be addictive, though I think it is prescribed with much more caution these days. Prozac is an anti-depressant and I think was seen as the wonder drug when it first came on the market, but I think there are now others which some doctors seem to prefer.
Ostrich - sorry you are feeling so low. Will pray for you - good you found such support from your friend in Tescos.
Pheebster - Can I have some of your fitness from taking your four legged friend for a walk? I really must try to venture out of the 4 walls tomorrow.
Think a bit more tired after 2nd dose than 1st, but mouth seems OK so far! A bit worried about the arm they are using as it has developed a tight pain inside the elbow when I straighten it which seems to be on the line of the vein. Will try and ring chemo suite tomorrow.
Swan - I hope you’re feeling less down, but it’s understandable because you (and we) all have so much to cope with. I think we all get really down days.
Aslan - woo hoo, retail therapy is a magnificent thing to do, hope you really enjoyed it!
Ostrich - thank you for sharing such a personal story. We’re all here to support you through this, post when you need to and there’ll always be someone to reply.
Avonlea - hope you’re still ulcer free (I have one tiny one but it feels like a boulder in my mouth). Hope you got to speak with your GP about the smear test OK.
Hannah - how nice that your son showed the vacuum to the living room, may I borrow him, please? Hope you got an answer from the kimo nurse about the tight pain inside your elbow.
I managed 9 hours sleep last night!!! I woke up a few times for sips of water but got back to sleep again quickly. I’d like to say I feel amazingly refreshed but I don’t, but I feel better than usual which is good. I’m off to see my lovely giggly acupuncturist today so looking forward to the ‘me’ time and also to the walk in the fresh crisp air. This arvo I have a round trip of 40 miles to see the complementary therapist at the hospital, so even more ‘me’ time,! Twice in one day, didn’t organise my diary too well there, but sooooo looking forward to it! I’m a bit concerned about this arvo because it’ll be maybe a massage so getting naked, or an Indian head massage. I’m OK about going around in public with no hair but not keen on anyone at all touching my head, weird.
Hi ladies…great to see everyone is in a positive vibe…and especially that Hanna’s sons have finally realised mum needs some help…fabulous! I am so pleased.
Cat - enjoy your day, girlfriend. Hopefully your little blonde bundle will complete your day by ditching the toast and eating dinner tonight!!!
Aslansmum…retail therapy in Turkey - great fun! All that bartering is the best way to get your mind off this rotten business.
I’ve had a couple of uppy-downy days. Feeling desperately tired at times and 10 mins later full of energy again…how weird is that. I am overindulging in wholemeal pitta and tzaki with beetroot (double weird) and back on the turps (white wine!!!). Today i feel back on track…as I did last time round.
I’ve been walking every day too…spent yesterday afternoon out with John and Pheebster-4-legs in the farmers fields…lovely and sunny ad really windy. Put my hat on just in case my hair decided to take flight!
We went out again this morning too - I took her swimming today in the lake which always makes me smile and which she loves, despite the cold - wish i could post some photos! We were out for a couple of hours, and so it’s lovely to come back to the warm and get the slippers back on…
My best friend is coming round anytime to try and make some sense of my hair which is still looking ‘normal’ but shedding like mad. It’s not coming out in clumps though more odd strands - just bloody loads of it!!! I’m now wearing scarves - just to get myself and others used to the new look, so it wont be such a big changes if/when it all disappears.
Haven’t posted for a while as haven’t been feeling myself. Haven’t been sick or tired but just a feeling of not being me really. Had a bit of a cry on hubbies shoulder the other night and it did make me feel a bit better. Am now feeling ok though. Have been busy catching up with all the postings on here - welcome Aslansmum.
Hannah I’ve got that tight feeling in my arm too, sort of runs from inner elbow down towards wrist. Feels sort of tight and sore and I’m going to mention it to my bcn also have tender wrist as well and noticed that when I was having the dreaded red kimo administered my wrist was sore at that time too.
Pheebster - hi my hairs shedding loads too, am wondering what to do about cold cap now. I know that without would have lost all by now but if I carry on losing at this rate by end of 6 Think I may have rather wide parting.
I could do with some of your get up and go too - I really must start doing some sort of exercise to compensate for all this extra eating I’m doing. I’ve always had a really sweet tooth but now I can’t get enough of savoury snacks and dips - am eating for England!!!
Cat - hi sounds like you’ve got a smashing day lined up - am feeling slightly envious. My hubby booked me in for a massage about a week ago but the masseur phoned me cos she wasn’t sure if she could massage someone on kimo - spoke to bcn who said it was ok as long as it wasn’t deep massage but must admit felt a bit weird about getting kit off which is not like me - I LOVE massages. Hope you enjoy yours.x
Hi Ostrich - have caught a couple of your posts on other threads and know you’ve found it hard recently, have been thinking of you a lot and wishing you well.
Well I must say I feel even better now, almost feels like I’ve had a good old chat with my mates. Won’t leave it as long next time.
Also think I might walk down school to collect kids as sun in shining here at the moment.
Take care all
Love caz x
Caz…I’ve been worried. So glad you are back. At least you’ve had a cry now and got it out of your system…that is always the best way forward.
I’ve had a painful wrist since FEC 1. it is definitely the evil red stuff (god, that disgusting stuff gives me nightmares) that is messing us up. Nurse at work diagnosed it as phlebitis, and onc confirmed it. In extreme cases you can have ab’s. Irina is also suffering the same thing.
I’ve had my hair cut and it is much choppier but still pixie-style, Michelle (my hairdresser) said there is definite thinning but still a long way to go. She recokons I;;ve probably lost abou 2% of hair so far. I will probably have another stab at the cold cap next time, but I will take a good thick blanket as I was cold last time and refuse to use the horrible kimo bedding …Yurgggh…
I’m just enjoying my 5.00 glass of wine (we call it pimms o’clock) and watching Escape to the Country…if only!
Just a quickie cos I have the rugrat climbing all over the show - Pheebs, I am envious, I would love a 5pm glass of wine. Had a glass yesterday evening with supper and it was jolly nice but could soooooo fancy one now! Have one for me, please!
The rugrat’s still toast mad but … he’s back to eating other food a bit now. I introduced a magnetic star reward chart yesterday (thanks, Amazon!) and he’s chuffed to pieces when he gets to put a star on it. One of the categories we’re doing is ‘eat all my food’ and so far today he’s eaten breakfast (cereal, even guzzled the milk from the bowl, plus toast and fruit), and a cheese and ham toastie for lunch, so still wanting toast but having other things too. Last night’s tea was sausage and tomato casserole with roast potatoes and he ate almost all of it for a blue star!
My blooming e-mail is playing silly b"ggers at the mo, so I’m owe you a reply from a couple of days ago - will drop you a line when it feels like functioning again.
Just popping in to say hi and it’s good to read how you’re all doing. I’m still trying to keep busy to take my mind of all the negative thoughts that pop into my head every now and then…grrr
For those suffering from low energy (me included) see the thread on Manuka honey. My BCN says it 's OK to take it, which I’ve literally just started, and some others have noticed great improvements. OK, it’s not cheap, about £10 a jar, but I’m willing to give it a go if it can give me more energy and improve my immunity.
Love to you all, here’s to FEC3 next week. Not looking forward to it at all, BUT it’ll be the half way point for me, which emotionally and mentally can only be good. Bella x
Just coming out of my low energy ebb. Thank god! I’ve been on honey since started FEC not sure if its doing much for energy levels but its certainly not going to do any harm.
Know what you mean about half way point I can’t wait for no 3 on 25th just so I can say I’m halfway through. Mad or what.
Am off out for girlie night round mates house, nice chat, chinese takeaway and a few Baileys!! Just what the doctor ordered.
Hi Ladies
Well I just wanted to post to say I,ve had a fabulous day out with my Mum and some friends. We went to a place called Kaya Köy which is a deserted village. The book Birds Without Wings was based on this place. A truly beautiful but eerie place. Took some amazing photos.
It,s days like today that I actually forget I,m having treatment etc. I wish I could put today into a bottle and pop it open now and again!
Caz I hope you have a great evening with your mates. I can,t remember the last time I had a Chinese…
I’ve just got back from a lovely walk with Pheebs, and I took her out to the lake again so she could have a swim. I’m feeling back on track again…I tend to think I’m getting off lighty on the fatigue side of things, but I don’t want to open my big mouth too soon!
I am going into work this afternoon for a few hours and have planned a few things for the weekend (mum’s cooking for us tomorow, which is always nice) and I’ve promised myself a morning in bed tomorrow reading. I’ve done the school run every morning this week and been up by 7 a.m., so I think I deserve to vegitate tomorrow.
Bella glad to see you are keeping on top of everything…can you believe that our next FEC will be our half-way mark girls…and for some of us who are moving on to TAX it will be one set of treatment out of the way! How fabulous is that!
Enjoy your weekend ladies - hope you all have some energy to do something nice, even if its’ just a nice glass of wine in front of the telly
Hello everyone. Not been on for a while, as once I felt better after second FEC, I decided to try and forget about the BC and concentrate on doing lots of nice things, walks, shows, meals, friends, as well as two days a week at work. Didn’t find the second FEC as bad as first, physically - muscle pains over sooner, mouth much less sore, etc. But GOD was I a grumpy cow? I don’t understand now why I felt so miserable. Maybe it’s a mild case of that kimo depression.
Worrying about my veins, though, now. Each time, the vein they used got very sore further up my arm, and it lasted almost the whole three weeks. Hope I can manage to keep them healthy enough for four more sessions, as have a rea horror of having a line put in.
But I must tell you, girls, about my lovely Look Good Feel Better session, at Barts. There were about eight of us ‘sufferers’, a couple of nurses and a lovely Jo Malone beautician. And the best bit was the fantastic free goody bag we all got, full of expensive products the like of which I never buiy. Clarins, Clinique, Estee Lauder. ~We all sat there with a mirror and had a teach-in abouit make-up for when you feel you look horrendous. And everyone did look so much better. Best tips where on making the most of your eyelashes when you don’t have very many. The lady also showed us how to tweak our wigs, with a bit of backcombing, so they didn’t look too sleek and perfect, which can be a ‘wiggy’ giveaway.
Hope you are all keeping well. Many of us will be half way through by this time next week.
One last thing, Coped reasonably with FEC. Will going on to Taxotere be better or worse? So many Christmassy things I don’t want to miss, but first tax is 10 December. Any ideas?
Bella, sorry your energy levels are so low, I hope the honey works its magic. It’s good stuff, I used it on my hand a few years ago when I had burns and it really helped.
Caz, hope you had a great time with your friends, a delicious Chinese takeaway and lots of Bailey’s.
Aslan, glad you had a great trip and would love to see some photos.
Pheebs, you are energetic with 4-legged Pheebster and the school run. You definitely deserve a lie-in and some pampering, enjoy your mom’s cooking!
Liz, lucky you having the Look Good Feel Better session, they don’t seem to offer it at my local hospitals. You certainly deserved the pampering.
Yeah, we are all doing so well and many of us at or near the half way mark!!! I had a routine check-up with the oncologist this morning, it felt like a bit of a waste of time. He asked how I was, I said fine, he said fine, and that was it. Then I felt like I was interviewing him as I went through my list of questions and moaned about them making decisions without including me in the process. He seemed to think I didn’t understand why I was getting Neupogen but my gripe was that it was just given to me with no discussion or inclusion in making the decision. I wouldn’t have said no to it, just wanted to understand about the whys and wherefores of the drug from them rather than having to find out about it online. These doctors forget that we’re real people and that we cope better with the meds if we know why we’re having them and how they work. I think they need a few lessons about inclusivity, or maybe that’s the teacher coming out in me.
How many of us are on to Tax next other than me, Pheebs, and Liz?
Had a fab night with the girls. Ate too much ( delicious food and tried so much more than normal as my tastes have changed radically since been on FEC ) drank too much, laughed till our sides ached. Best medicine ever!!! And no hangover this morning - perfect.
Cat I’m not going onto Tax 6xFEC for me. I agree totally about being included in discussions and decisions about treatment. My bcn told me after last kimo that I would be having long acting Neupogen injection day after each kimo from now on. Still not sure if I agree with this as will be having injection without them knowing if my count is low. Hopefully am seeing onc before next kimo so will speak to him then. Don’t like to make too much of a fuss sometimes but hubby says I should ask the questions and I’m well within my rights to say ’ actually I’d rather not '. Will wait and see what he says.
Caz, the onc says I have to have five Neupogen injections after each chemo until I finish, this is regardless of what my wbc is. They want to err on the side of caution rather than it get so low that I end up being admitted to hospital. I’m not arguing with that. I asked about the one shot injection (Neulasta) but my hospital trust won’t fund that so it’s the full five jabs for me! If you don’t want the jabs, you are within your rights to say no, but definitely speak to your oncologist and discuss things so you’re satisfied with what’s going on.
I am doing some work from home this week - so have not put much input here. But some developments by far
my BCN to refer me for some complimetary therapy this week, just got refered, so no treatment yet but appearently you could ask this
not sure about my white count this time - heard i might need the injection again- but not sure
been having manuka honey - no sign of anything yet , not feeling better or worse really , but be careful my onc did say there are some hormones within he honey so i am trying to take a small amount each day.
a friend also recommend me some books inclduing ’ the cancer directory 'by rosy daniel. i am kind of person needs lots infomation so if you are the day hope this could help.
not sure anyone here also worry about losing weight ( i am 9.5 stone in total, 9 stone now without hair) - i found organic peanuts / any nuts/ crisps really help. I am back on my normal weight after 1 week of crisp/nuts craving diet.
ICat, sorry you have to have 5 injections, hope the arragment now works better for you.
Bella, i found eating some nuts helps energy- but again my energy has never been so low, i was told just to take it easy, after the one week feeling of frastrution of not being able to do things i am now trying to make peace with it …
Liz, so nice you 've been to that section- how does it like
Hope you all have a good weekend and some nice pampering !!
Been busy with Feeeeeling gooood! :o) had a day out with a good friend and went to Ikea and Costco… talking so much I missed the Dartford tunnel turn off and almost ended up in the west end!!!
Only thing I have noticed is a little twinge in my left arm (Kimo arm) at the inside elbow… weird as it’s been OK… may be too much shopping!
I have been taking Manuka… 20 UMF all along… well my Mum bought it …£27 a jar! Bloods were OK and I feel OK after week 1 of Kimo… I have also just bought a jar of Life mel… OMG £37!!! for 125g jar… I will use for days 10-14 only and Manuka the rest of the time… Anything to help me get through this and Christmas feeling “Me”
I’m on 6 x FEC too Caz… copied in on letter from my Oncologist after last visit… they may change me to cyclizine and buccastem for anti sickness on the next dose of the poison.
Planning on enjoying my weekend before round 3 … ding ding!
Even have a “date” Monday (he was busy over weekend and planned so just before dose) with an ex… hoping it’s not out of pity… not sure whether to go for the wig, hat or scalf look! getting used to the hat look but god it gets hot in doors! He’s an Italian Consultant! no not my oncologist :o)
O must be getting used to the bald me… was on the phone and door went… parcel for neighbours… answered “bald” signed and then on sitting down it dawned on me… I wondered why the poor young guy had his eyes popping out! LOL
Lorna- i know what you meant- got a tesco delivery the other day and froget to wear my scarf - the delivery guy just looked at me like… lol that was funny
have a good date!! i am in touch with an ex too- well, have to seen him since my hair loss- will see him at some piont too ( not a date) bottom line is if he does not like my wig- i know another reason why we are not together !! hehe
