So sorry you were rough Shirl and in hospital but glad you’re better. I have kept a bag packed ready for hopsital and of course ‘Murphy’s Law’ applied and I haven’t needed it thank goodness. You seem to be back to your old self again shopping and wrapping. Love Christmas. Third down, one to go. You’ve not been too bad on epi have you? So I bet you’ll be running a marathon on xeloda!
Gardening Fiona - I haven’t touched mine for 6 months. It’s a mess. I agree with you about the support on this site. It’s just brilliant. I had very low days on epi and found this place a real lifeline. But thankfully those days are over now I’m on the tablets. Just knowing you can come on here for a moan or to let off steam anytime has certainly helped.
Yep Liz - loads of energy. My house looks clean again too. Just the garden to contend with now. Sunny here too & have actually pegged some washing out. First time it’s been fit for ages.
The party is in North Manchester, 28 March - all welcome. There’s already half a dozen ladies I know who are on the ‘other side’ of breast cancer who will be there. Did I tell you that my mother-in-law had BC over 50 years ago and is now 87! (She’s not coming to the knees up though - she has heart problems)
I’m no super woman believe me, I just feel so much better, both physically and mentally and am making the most of it.
Just been re-reading through the thread again to remind me where everyone is up to. I don’t know about you but I seem to be losing brain cells by the dozen and having to constantly write things down otherwise I completely forget! I’m only 46, but my nearly 13 yr old Jess said " what’s that disease you get when you are older…Alzheimers we replied. “have you got that too?” …Out of the words of babes! Ha Had to laugh otherwise you’d cry!
My so much has happened to you all over the last few weeks.
SHIRL, I can relate 100% to doing the cleaning etc in the early hours and when I was on Epi I went for days without having a good nights sleep and didn’t take the steroids (as per Chemo unit instructions) but my sleep pattern is returning to ‘normal’ now on xeloda.
I think your work mates are fantastic raising that amount of money. My school let the parents know why I was off ( Can’t got to work as work with KS1 children Infants and told by Onc no way could I work as too high a risk of infection) and when they had their Think Pink day - ALL the children - even the tough boys who would never dream of wearing anything pink joined in. The school raised £500.00. We normally raise if we are lucky £300 tops for any charity, so it was brilliant news. The staff I work with made me an A3 pink booklet with photos and the children had drawn pictures of flowers and they all had lovely messages too. The title of the book was ‘If lovely people were flowers we would pick you’ Well you can imagine when I received it, the flood gates opened, so I feel priviliged…
talk about pratty - just did something wacky on this keyboard that had me typing in chinese characters! Panic set in as I could imagine the comments from OH…thank goodness I rectified it…Ha sort of
LINDA - hope all is well and you are not experiencing too many side effects.
JUNIELIZ - Oct has been rough month for you and I feel for you. I was told I might have to have Blood transfusion and really panicked. Ate loads of red meat and iron rich foods! Praying Nov is a better month.
LIZZIEMUM - Hope the runs are being sorted with tabs. When you said they started 2nd day is that after first days of Xeloda or after 2nd round of tabs? Thanks for mentioning about teeth too. My teeth are a bit twitchy. Two in particular and they have never really given me any probs before. I was getting really worried that my dental hygiene was not good even though I have been rinsing mouth frequently and using high dose fluride paste the dentist gave me. Has anyone else need a tooth clean and polish as my teeth are quite brown? I know it’s the chemo and mouthwashes combined but they do look disgusting. What sort of treatment can we have when on chemo??
Anyway -must get on I’ve been on the forum for 2 hours! Cakes to make, ironing to do. Gotta catch up with Super Mal! Still at thinking stage of cards and presents though.
Hi all
well they cut my steroids and i slept fro 7.30 till midnight, then 12.30 till 8am this morning, and god i felt fantastic, OH had to make his own packed lunch though, first time in weeks,
My sister has suggested that we go back to Manchester ( John Lewis) on thurs, for some more retail therapy, well OH did find some new bedding there last week so i might go and buy it, and i love there coffee shop, I might write a book at the end of all this, Coffee n Chemo good bits n bad,
Fiona. i tried to bake a cake the other day, then woke up when it was cremated, so dont think i will be trying that again in a hurry,
Oh well feeling sleepy again so i’m going for a nice bath then bed,
night night lovlely peeps
Shirl
Glad to hear that you have slept! I remember,oh so well, the insomnia, and it’s awful, so can really relate to the elation when you have a decent nights kip.
Sorry to hear about your cake. I have to say that after baking two xmas cakes and an apple cake plus doing dinner, and finally clearing up kitchen, I was absolutely floored. I’d been on my feet from 1pm until 9pm. Energy level hit rock bottom and I did far too much.
Has John Lewis opened up in Manchester? I live a short drive to the cheadle one and know of the one in the Trafford Centre, but didn’t know of one in Manchester. Did you have a good time. Coffee/Tea and cake is good at Cheadle too!
Shirl glad you’re sleeping better. The steroids are a pain. I remember watching films at 4 am. Sleeping patterns do return on xeloda. Enjoy your shopping in Manchester tomorrow.
Fiona - sorry you’re having a bad time on xeloda (read the other thread). I’ve had the runs in the morning but that’s all, otherwise it’s just the tiredness and low level nausea which I can cope with. I’ve just finished the 3rd cycle of xeloda and the tiredness is cumulative. Went in work this morning and a girl came up and said ‘you’re a real inspiration to us all’ and gave me a hug. I don’t feel that way. Sometimes I feel well and I work longer then I feel rough.
Don’t want to feel inspirational - just normal
We aren’t brave (well we are) just want to be normal (whatever that means).
Hi Mal - thanks for your reply. Just feeling down, as these side effects just seem harder than I was expecting. I’m searching out on internet for Udderly Smooth hand cream which was suggested by trial bcn and should get some next week. No stockists in Manchester though. Nearest is in Liverpool but they only have the foot cream.
Do you have diarrhoea every day or just at certain times Have started another thread to get feedback on this but not had any replies yet?
Hope all plans for your shindig going well and that the tiredness is not too debilitating. I can’t go into work because of age of children so I can wallow at home! Can think too much at home though.
13yr old bugging me for lap top so gotta go!
Hugs to all
Fiona
Im now on my second course of Xeloda and so far its not been bad at all. Im tired and have had some diarrhoea but the tablets seem to sort that for me. The tiredness is still there… but I havent felt sick so thats good.
Fiona, I have really dry hands at the best of times, I was told to be very carefull with them, I have been using shea butter at night and put on cotton gloves to sleep in, it seems to be doing the job. The girl at the hospital said to put in couple of drops of frankinsence and mandarin as these are supposed to help the skin heal. Might be worth a go…
Thanks Angela for that. I have Mandarin already - I’ll pop and get some Frankinscence too. Hands started to crack; skin peeling off and look and feel burnt on ends of fingers now! Hey ho makes cooking and washing up hard. My 13 yr old may even take the hint and help with the washing up - but I’m not holding my breath.
Ha LOL sort of !
Fiona
I think you probably have as much chance of your 13 year old taking the hint as I have of the other half talking the hint. Its like talking to a brick wall. I dont envy you with the hands, I have managed to keep mine under control so far, saying that, my feet hurt, If i walk anywhere they get sore quickly. They are looking pretty dry.
Hi again Angela - I left a thesis on one of the other threads - Xeloda (capecitabine) side effects - on what went on if you want to see, but I am feeling better today. It just seemed to be the 2-3 days once I had stopped taking the tablets - I was told by the Chemo nurses that it is because the drug is at its highest potency at the end of the two weeks - the opposite to the Epi which was the other way round.
I know Epi was hard but there was always something to take to make the effects easy, or at least for me I found it so. … Once I started the meds to stop the heartburn/relux I felt okay; the nausea was pretty grim but I wore bands and took the meds and it was copable; once I had ‘diflam’ it took the soreness out of the mouth ulcers on my tongue which were only bad towards the end of the 4th cycle. Okay the tiredness was grim I must admit,
BUT I feel generally okay on it. The stomach cramps and the ‘interesting bowels’ can be irksome esp if I’m out, but drinking and eating little and oftern seems to have helped these.
Hacked off about my hands though - I never realised how much I used them and it is making typing, and general household things difficult. Driving was a little uncomfortable. But many of the comments on BCC forum re Xeloda say they are okay and it has not affected their hands or feet. If I didn’t have that then I would feel completely normal with the odd upset stomach feeling and that would be all.
I feel lucky I haven’t sore feet 'coz I can still go shopping and be okay - but I am getting the odd tingle so I can imagine that next cycle I might just have the feet come into it too!
Can’t wait to get thie UdderlySmooth cream - it’s supposed to be ‘fab’ I’ll let you know.
Hi all
It is the Cheadle John Lewis’s that i go to, my cousin lives just round the corner in heald green by the church, Have any of you suffered with pain in your arm, today mine is so sore and straitghening it really hurts, the veins in the top feel really lumpy, i have used Ibrufen gel as told by BC nurse and hot water bottle but its really sore tonight, i thought i was having it to good,
just one more epi next fri then onto Xeloda, it has passed so quickly, cant wait to hear how good the cream is, i have already started putting cream on my feet at night in readiness, ever since i did my second moonwalk my right foot has never been the same it’s always dry and flaky.
going for a curry tomorrow with 40 friends from work, one of the girls are leaving, i’m really looking forward to it,
Flo i cant wait for xmas when our 13 yr old gets her own laptop, then i will have mine all to myself,
Shirl - My local John Lewis - 5 mins drive! Want to meet up and have a coffee ?? I live in Bramhall/Cheadle Hulme border. Which Church in HG - there’s quite a few!
Going to have wait a bit longer for the cream. Northern Stockists (Liverpool) having to wait to get hand cream in - they have the foot stuff but don’t need it yet, thank God due to prayers, as not had any sore red bits yet…! Going to try Aveeno used by my daughter for her eczema years back and the us site chemocare.com suggested it in their 'care for PPE (Hand Foot syndrome) as well as Udderly.
So I’m NOT going to do any more washing up, the site even said don’t use rubber gloves either as this holds the heat against the palms…I read all this out to my family, whilst having breakfast…I shall wait with baited breath to see how bad the pile that already exists on the kitchen surface increases! I think I may have to cope with the heat on palms bit as the stress of seeing it all there and knowing I have to try and get dinner ready later, I can’t cope with mess before cooking - I get too stressed!! Ha!
One thing I have done this am which was also suggested is to put hands and/or feet on a cold pack - you know those squidgy, malleable ice pack and this has helped with some of the soreness and I’ve been able to type quite happily…yeehaa.
With all the different websites and what seems hours of reading I’m getting quite knowledgable about lots of new stuff. This PPE is interesting and now knowing why it happens, I feel happier…mad huh but that’s how I seem to cope. I was even more sad and started to look up metabolic processes, with organic chemical formulas - took me back to A level chemistry! What I can remember is postage stamp size now so was hard but I now know how each of the drugs work.
well enough of the science…going to do more science - bake a cake!
Just replied to you Fiona on the other thread so won’t repeat myself except:-
I’ve collected my last xeloda, femara too (next five years) and don’t have to see onc again 'til next June!! What a fantastic feeling. Been butchered and poisoned, just the fried bit to go!
Sorry Fiona I hadn’t realised you were having such a problem with your hands. I’ve been lucky. Just a bit tingly and red and have just been using E45 but Udderly Smooth is supposed to be brilliant. There’s loads of websites selling it especially vets supplies! Hope you get it sorted soon. Definitely no washing up. See how long it takes before you run out of plates!
Shirl hope you had a great day shopping. Did John Lewis have any discounts? Gosh one more epi? That’s flown. Just hope you’re as trouble free as I’ve been. The worst for me was the nausea but it has been controllable, and the runs first thing every morning.
Hi Angela - you seem to be coping with the tablets OK too. What part of the country are you from?
Im in Scotland Just south of Glasgow. I am doing well on the tablets thankfully, two and a half sessiond to go before the rads. Where are you from? Finding this site a god send as I havent met anyone at the hospital. Its great hearing how everyone is getting on.
Hi Fiona
my cousin lives opposite the social club on the right that is just passed the church on the left going up towards the Griffin, not sure what the church is called, her house is large and very old, ( bit like how i feel ha ha) . You might even know my cousin she was a practice nurse at a local surgury for years but has now retired. Meeting up for coffee would be really good, just pick a morning and i can get there for 10 ish, but next week i cant do Tues of Fri, dam hospital appointments intervering with my life,
Mal, how odd it will seem to have no appointments on your calender, the end in sight, yet in the beginning it seems so far away, good for you, you show em girl,
No offers on in J Lewis, more the pity, i really love that shop, but i had to laugh yesterday when i saw a cardi for £59, i bought the exact same one for £5 in T J Hughes in Chester, maybe i will keep it for sundays and high days, and dont get me started on the price of some of the handbags they sell, where do they think we get all this money from
Oh well off to Ikea tomorrow, have a good weekend all,
Shirl
Shirl, are you finished with epi now? Any more shopping trips? Your cardi sounded a great bargain. I’ve never been to TY J Hughes - will have to give it a try. Off to the Trafford Centre with my daughter on Monday. Don’t really need any thing just going for a look round and lunch.
Angela - you’ll be half way thro’ your xeloda now and still keeping well I hope. I finish mine next Saturday. It’ll be a stange feeling not to be taking anything for a few weeks. I live in Manchester.
I went for my rads planning session on Wed. It was nothing. Just had to lie still for ages. I’ve now got 2 red tattoos. Start the rads 2nd Jan.
Hi All
sorry i have been missing for a week but i have been in hospital, I got an infection from one of the injections in my arm, it was very red and swollen so they tried to get antibiotics in through a vein but no good, so they had lots of trys with my legs and feet but no go, so thy kept me in till yesterday from last saturday, my arm is still sore the vein is very hard and swollen so they wouldnt give me my chemo yesterday, i wil go back for a check up on Tues and if all ok i will get my chemo on Fri.
Fiona i will give you a ring about meeting up, this week if you can do it,
Mal hope you had a good day shopping at the trafford centre,
Shirl
Yep, Im almost finished my second Xeloda, will start my last one all being well on the 31st of dec, petty I didnt have to kate tablets for two weeks or I could have looked at it being finished this year… never mind, hopefully by this time next year we will be looking back and this will all just be old news. Hope your keeping well
Happy New year everyone…took a while to find our original thread, so thought would ‘bump’ it up so if you’re out there we can start our chats up again.
Shirl,how about that cuppa in John Lewis cheadle ? Mal… you could come too as you are local to me…how about it. PM me if you think good idea.
OK? John Lewis meeting sounds good BUT I’m working mornings and rads inthe afternoon. Sorry - I would have loved to meet up. If anybody is in the Manchester area and fancies my ‘end of treatment/cancer research’ party on 28 March, let me know. It would be good to meet and there’s already 4 BC survivors (I hate that word) going. Two bands are playing (for nothing) and the hotel is letting us have the room for nothing. Should be a good do - let me know. The Bower Hotel, Chadderton (one minute off the M60).
Hope you’re all OK. I’m now 4 rads down and feeling fine.