Hi Jackie, sorry you are not feeling well, hope you will be up and about soon. I had my grandchildren yesterday love to see them but it is tiring so relaxed when they went home. I am starting CMF on Monday so feel as though I am halfway, I had a line fitted on Thursday as veins playing up so hopefully it will be better and the veins will recover. Take care all you ladies love junieliz
Hi Trojan (Shirl), I’m not the best at keeping up to date with the forum but just to say that good luck for the forthcoming weeks. I’ve chatted on the other threads and I, too am on Arm 4. First 2 weeks -no nausea and generally felt ok - I did have a major hiccup and caught cold which ended up going into Chrisities (see other thread). I have to say that the 3rd Epi just hit me. Been feeling very nauseaus, massive headache, difficult to swallow hot liquids as hurts upper bit of windpipe/oesophagus and generally yuk! I seem to be one of the 1 in 10 that reacts to the gcsf and nobody can touch me or hug me for 2 days as my back just is so tender, and I just disappear to bed. So, as you can see I think the other girls are right that each arm has it’s +ve and -ve’s. However for the first 2 sessions I felt ‘great’ (well considering!!) and did loads. Will check more this week. Going out to get some fresh air with family today (lovely and sunny here in South Manchester) as been cooped up feeling sorry for self for 5 days.
Fiona x
Hi all
Mal, im just into North Wales only 20 min from Chester and about 45 min from Manchester, also not to far from the beach, I love going there to relax i find it’s so soothing walking along the beach, even in the rain. So glad your scan results were clear, and im sure the hangover was worth it, I havn’t prepared any meals i just have not had the time, but my OH is such a good cook and he enjoys cooking so i think me n Em will be fine, My oldest sis had her treatment at Christies for her bowel and womb cancer, she was so unlucky to have to seperate cancers at the same time but 8 years on she is brill, after both my sisters got the C, i took out a well woman plan against getting a female cancer, hoping i would never need to make a claim, but the claim is in and just waiting for my surgeon to send it back, then wait and see if they will pay out, it will be a great holiday at the end of all this if they do. and Mal do we have to take the Xeolda at the same time every day, my brain is getting so confused trying to take in all the different information and trying to accept that this is really me it’s happening to.
Jackie, hope you had a great time with your grandaughter, A hangover without the drink, now thats not a pleasant thing to have, i hope you soon feel more like your old self soon, and i think we have to learn to take it easy and relax, but if your anything like me i dont want this thing to rob me of 1 day, so i try to carry on and because i dont feel ill its easy to kid myself that alls well,
Juneieliz, good to hear from you, it is so good to have family visit, but when my sis comes to visit with her 6 youngest it’s great to see them all but if the weather is lousy its hard to amuse them all, but now she has moved closer to me the kids dont come here so often,
Fi, sorry to hear you are one of the unlucky ones and that you have had things rough, i have read on other hreads that quite a few ladies complain of a sore back and tenderness, as if we dont suffer enough, I have decided that after my first session that im coming home and im going to be a total couch potatoe for that day and laze around watching my fav feel good movies, then take each day as it comes because i cant plan ahead incase i have a sh***y day.
My daughter is getting my sense of humour with this thing, she has worked out that if i have my 1st chemo on the 17th and most people on here say their hair starts to leave after 14 days, she said i can get away with it because the 31st is halloween, and i can frighten all the kids that come knocking on our door, and i wont even have to buy a costume, Scary but true.
Well OH just putting up my new washing line, it’s lovely and sunny here and quite warm in my back garden, Im hoping to get some painting done in the daughters room later, skirting boards and radiator, OH is taking her skating so i will have the house to myself,
Hope you all have a good day with many more to follow, and enjoy the sunshine
Shirl
Hi Girls
Shirl you lucky thing being in North Wales. We’ve had a static caravan between Llanberis and Carnarfon for a few years now but don’t get down there as much as we’d like to. Like you say, just walking on the beach and sitting watching the sea is so relaxing and peaceful. Your family’s been so unlucky but the insurance plan was an excellent idea (even tho’ you’d rather not claim) and a holiday will give you something to plan for and look forward to. Don’t start worrying about xeloda yet. One bridge at a time. Everyone reacts differently to chemo so you just have to be prepared to ‘go with the flow’. I had my first on a Friday and felt nothing (just a bit spaced out). Sitting in the garden on the Sunday I thought they’d given me the wrong drug - the effects didn’t kick in 'til Monday. 2nd epi was different again!
Hope you’re feeling better now Jackie and have enjoyed the time with your granddaughter.
Junieliz - hope you find it easier now the line’s fitted. Let us know how you’ve gone on today.
Fiona - glad you’re feeling more human and hope that you had a good day in the sun yesterday.
Stay well ladies
Mal x
HI Mal
my oldest sister bought a static this summer and she has it on a site in Caernarfon, it’s really lovely and OH sister also lives there, she used to live in Penisarwaen by Llanberis, this is such a lovely area it’s a shame you cant get there as often anymore.
Well i bought a big bag of natural liquorice to help with any constipation i might get, i prefer this to prunes, any excuse i just like liquorice. also bought 48 bottles of water i’m trying to drink 3or 4 a day.
hope you all enjoyed the sun at the weekend,
Shirl
Hi Shirl
Small world! Our van is in Llanrug. We last got down there about a month ago and are hoping to get down for a few days before the site closes at the end of October.
Hate to tell you this but I (like to be different) never suffered from constipation - quite the opposite! So make sure you have some immodium as well.
Not long now. Hope you’re not getting too nervous. Don’t know whether you know but the epi doesn’t take long at all, only about 45 minutes. Some of the other combinations have to be ordered on the day, which means waiting about, and then takes a couple of hours to administer. I was still there for about 3 hours in total, waiting for bloods to be taken and the pharmacy… Last Friday I had to wait 2 hours just for the pharmacy to give me the xeloda tablets.
Hope everyone else OK.
Mal x
Hi Mal
I hope you do get down this way before the month is out, it will be nice for you to have a few days at the van,
i will add imodium to my shoping list for tomorrow, my first aid box is quickly turning into a cabinet.
The trial nurse has told me that it wont take long to administer, she said i will have a meeting again when i get there to go over everything again, then have my treatment, she said i should leave by lunchtime, my appointment is at 10.
I asked her today how i long i should wait for my prosthesis, it’s been 10 weeks since my op, and the softie i was given on leaving hos is past its best, and even though OH tells me i dont smell i think i do, even though i have washed the sock. She is going to ask the BCN to come over to the chemo ward to see me, My sister said she didn’t wait this long for hers. I just hope i dont wait this long for a wig,
take care all
Shirl
xx
Hi Mal and all, went for first CMF on Monday had it through the line everything was ok, but the line is a bit sore, keep putting heat pad on so hopefully it will get better. I have been ok on epi but my legs below knees started to get hard on Monday night and I wasn’t passing water much even though I was drinking plenty, went to bed Monday night legs ok next morning, up two hours legs hard again, so sat with them elivated, went to bed Tuesday and was back to normal with the waterworks so legs ok so far today. Skin a bit sore to the touch, sickness once yesterday, so yes different to epi for me but doable as we say. Hope you ladies are all well take care love junieliz
Hi Girls
Strange how we all react differently to the chemos junieliz. Most people find CMF more tolerable than Epi. You need to keep an eye on your legs though. If you have the problem again you could do with 'phoning the chemo hotline. But apart from that it sounds as though you’re handling it OK.
Shirl you’ve been waiting a long time for your prosthesis! Hopefully you’ll get your wig a bit quicker. I still had my hair when I went for my 2nd Epi it starting coming out in handfuls the following week, so you should have 2 to 3 weeks before you need it.
When I went to Christies on Friday they told me that I was on a higher dose of xeloda than I should be and offered to reduce it. I refused saying I’d been OK. Anyway the nausea has been getting steadily worse this cycle so I phoned the trials nurse this morning and she’s reduced the dose by 20%. Even with the nausea it still wasn’t anywhere near as bad as Epi.
Take care girls
Mal x
Hi
good to know the xeolda is slightly better than the epi, this will ghive me something to look forward to, I phoned my BCN and she is going to see me after epi on Friday, to check me over and hopefully i will get fitted with my prothesis, she didn’t apologize for the wait so maybe this is normal in this area, she did say if i didnt feel up to it get my trial nurse to ring her and we will re-schedule,
Mal, i hope you will feel the benefit of having your meds reduced, and that the nausea eases off, well at least a bit.
I painted the skirting boards and radiator in the daughters room this morning, then slept for 1 hr after loose women, i think their great. I think this might be the last thing i get to do in her room, OH and emma had a moan at me for doing it, Em also said the house stinks of paint, dont know why i bother,
Junieliz, how are you feeling a few days in, hope the heat pad helped.
Shirl
Hi Girls
Shirl, this time tomorrow you’ll be able to cross the 1st epi off the calendar! And yes thanks the nausea has gone already. So she was right, the dose must have been too high.Take it easy today and don’t forget to have something to eat before you go tomorrow. Good luck. Glad the prosthesis is getting sorted at last.
Junieliz, hope you’re still OK and your legs aren’t bothering you.
Take it easy girls
Mal x
Hey Ladies
went to the local BC support group tonight and they had a lady from a Bra Company in displaying her wares and offering a measuring service, Well i got measured and i have gone up a size but dropped a cup size, so picked 2 lovely bra’s and she had beenie boobies, i tried one and it was very good, but when i went to pay i nearly died at the price of the matching pants £27.99, so when i wear one of my new bras i hope i dont get hit by a bus because my knickers won’t match or i will be going commando.
On countdown for the morning, i have requested 2 poached eggs on toast from OH, with plenty of water, and im going to wear one of my lovely new bras to go for my prothesis, It felt so nice to have bought some lovely underwear, and OH said they feel lovely and look great,
Life can go on
Shirl
Hi all
Shirl, let us know how you got on. The first one over and now you’ll know what to expect next time. The bras sound good but the pants? Were they gold plated?
Hope the rest of you are ekeeping well.
Mal x
Hi everyone
Just back from my week on Isle of Skye with our touring careavan. Had a lovely quiet week being spoilt and cooked for by OH (doesn’t usually happen). Weather was rather fierce though - thought the awning was going to take off several times.
So much has been happening on here whilst I’ve been away its hard to keep track. Welcome to everyone new sorry you jouned us.
My last epi is over - yippee and my hair is growing back already. Get my first xeloda on Wednesday - hope i do as well as you Mal
Take care everyone
I’ll try to keep up to date noe
Liz
Hi
well first one over and it wasnt bad at all, the nurse was lovely my meds were ready when i got there, she found a good vein so that was good, a lovely WI lady kept popping in to ask if me or OH needed a hot drink, then afterwards a nice red cross lady offered me a shoulder and arm massage, but she couldn’t do my bad arm as it was soooooooooooooooo sore when she tried, then they brought in lunch, also they all kept saying they loved my pink streaks in my hair, and saying how healthy i looked, I know they mean well, BUT, i dont know i just feel i have a BUT, im not in my head. I didnt realise how many pills they would give me to bring home,18 a day, and the district nurse is coming to do my jag, so thats a releif OH was gonna try, I thought i would get 2 weeks off then have next epi the following week, But i go back for the next one 2 weeks today on 31st i might go in fancy dress. ha ha. I have just slight heartburn tonight and feel tired but not sleepy, weird.
Lizziemum, I am so envious of you that you have been away to Skye, holding an awning down in the wind adds to the experience in a funny way, Glad your OH was spoiling you, its well deserved, and well done you no more epi, hope the xeloda work well for you.
Protheseis lady was great,and she agreed the knickers were to expensive, so i was mis=match lady today. I have to wait 2 weeks for it to arrive, silly me i thought i would get it today, with the illness you have to wait for everything.
takc care all enjoy the weekend
Shirl
Hi girls
Good to hear it went well Shirl. Just make sure you don’t have your last steroids too late otherwise you won’t sleep. Some say take the last one mid-afternoon but I always took them about 5pm and was OK. The massage, drinks and lunch sound good. No such luck at Christies - not even a drink! I always took my own. Take it easy. Yep 2 weeks between epis, so need to conserve your energy. Glad the nurse is coming to do your injection. Some people complain of pain after the injection but I never had any side effects. Hope you’re the same.
Liz - battling the wind on the Isle of Skye sounds invigorating! Xeloda next week - you’ll see the difference (and the hair grows too).
Take it easy
Mal x
hi all you ladies, I am doing ok, legs back to normal after two days, I am going back on Monday day 8 for second dose of CMF will mention my legs to nurse. Do others suffer the runny nose? as soon as head goes down it’s like a tap small price to pay I know. The Isle of Sky sounds nice, we went off in our tourer on the 03 October for the weekend first time since April so enjoyed the break. We went to the caravan show at NEC on Thursday and bought a new tourer so looking forward to going off in it. I was tired at the end of the show though. When I was taking steroids on epi I took two at 8am and two at 12pm so did not keep me awake. It seems like I have hair coming through now epi has finished very slow but a little covering. The line is still restricting movement in my right arm and is still a bit sore but getting better, the veins are still bothering me so I wonder what they would have been like without the line. Take care all you lovely ladies love junieliz
Hi Girls
Junieliz, Over half way now! Runny nose yep. Still got that. And yes I’ve a covering of hair (more like down really). Glad you’re coping with CMF OK and getting out and about. A new tourer - that’s something to liik forward to. Steroids at 12? That’s even better than teatime. Sorry to hear you’re line’s still sore but only another 3 to go. On xeloda tablets there’s no IV, just blood tests and I keep telling myself ‘only another 2 needles’. Can actually see light at the end of the tunnel now. Will you be having rads & hormone treatment afterwards? I’ve started looking at the rads threads so I know what to expect.
How you doing today Shirl? Did you sleep OK?
Liz, when are you planning your next trip? 6weeks since my last epi and the hair is there but so slow… I’ve also got sideboards growing! I would have panicked if I hadn’t read about it beforehand (it’s common and falls out after a couple of weeks).
Take care ladies
Mal x
HI Shirl
Yes Skye was great. What are your 18 tablets for - sounds horrendous I only had 10 at most?
Hi Mal,
Unfortunatley Skye was our last trip this year as most of the sites close but we will be away at easter, not decidied where yet but something to look forward to. Should be feeling great by then as don’t have to have rads so when xeloda is done that is me until recon middle/end of next year. Can’t beleive that treatment has only12 weeks to go. It’s been going on since first op in May. Never thought it would end but there is now a light at the end of my tunnel and getting nearer… It can be done without too much stress if you just go with the flow and be positive.
No sideboards but hair is definitely getting longer - feels more like hair now not just spikes
Hi Junieliz
Will be going to Glasgow caravan show in feb too far for national. Hope your 2nd cmf goes ok. Isn’t it great now we are on the 2nd half of the trial
have a good rest of weekend
Liz
Hi all, nice to hear from you,
Mal I am glad it’s not only me with the runny nose, drives you a bit mad, I will be off again tomorrow for day 8 CMF I finish chemo on the 12 January 09 but yes am over half way now, not too many problems so far, but feel so sorry for others who it has had a bad effect on thinking about you all. Yes I will be having rads don’t know how many though not asked about it yet as too much info at first but will do the next time I see onc, then tablets for 5 years, take care
Hi Liz, the show was good enjoyed it, my sister bought a lovely caravan fleetwood heritage, top of the range, we bought a avondale as the price was really good due to them finishing, we still got the three year cover with it, and it has a fixed bed, so great no more making up the bed. Hope you enjoy the show, and that you are doing ok with your treatment, how have you been on the chemo. Take care all love junieliz