Well that’s the first of 8 cmf over with. They had a bit of problem getting the cannula in, but when they called for the big guns after two failed attempts, it all went smoothly. Felt a little strange as the last of the cyclo whatsit went in but just sucked on my sweets and it soon passed. Chemo nurse told me that sickness and nausea could be the worst se’s with this, so to take my anti sickness even if I didn’t feel I needed them, as better to treat it before it happened. Was a little concerned as I was only given my usual anti sickness but no steroids this time. OH is very impressed with this as I have been known to turn into the organiser from hell whilst taking steroids. I know that most of you are behind me with treatment but would be pleased if anyone could put my mind at rest that I don’t need the steroids. I have phoned my research nurse to check it out with her but she hasn’t got back to me yet.
Glad you’re doing fine this time Carmel, don’t let the negative thoughts get to you about grandchildren, it’s the epi talking. Grandchildren are the best thing in the world. You definitely can’t feel low for long when you’ve got an almost 3 year old chatting to you and giving you big hugs. We had a fantastic weekend.
Good luck tomorrow Lily, I’ll be thinking of you. At least you haven’t got to worry about them getting the chemo in. I was thinking about you and your port while they were messing about with my veins this morning. Enjoy your fried breakfast. I had a very large bacon sandwich before I left home this morning, very tasty with brown sauce.
Julia good luck to you as well tomorrow. It must feel good knowing that you will have completed the course.
Hope everyone else is doing OK, especially Lalala, I hope your infection has now cleared up.
Hi
Just wanted to say good luck to you … Jackie keep us posted on the change to cmf … and Lily I cannot believe you’ve nearly finished the long, country route (that I’m on as well - roll on April/May!!). You have been an amazing support for us all - make sure you let us know where you’tre going to be posting next!! Cyber well done hugs to you. Carmel - no morbid thoughts today… stick to shopping!!
xx
eek - sorry Jackie you posted while I was typing at snail pace rate!! Good luck too to anyone I’ve missed out - if bloods ok I’ll be on 3rd epi on Thurs. Let’s hope it is better than no. 2
xx
Hi,
thanks I am as happy as you can be when going for chemo tomorrow!!! I will be most excited on the way out if not a vegetable from the piriton. I have to see the onc in the afternoon so may just sleep in the car and take my alrm clock!! That will be for a referral to the cardio vascular team to take my port out and a chat about what rads and hormones I am having. I am really not on the ball about hormones but have been reading that some of the expensive ones have slightly better odds so will be having a big debate with him if he goes for the cheapest one, Tamoxifen. After all we are on trials so they got all our drugs free and someone told me that TAC is charged at £4000 a shot in her private unit. So I am a real bargain!! The poundshop of chemo treatments.LOL
Carmel so glad to hear the last was the best so far for you. I am always much better if I can stay calm and nothing goes wrong on the day. I get horrid morbid thoughts too but they do get less over time, it is that rotten epi talking to you, he is a deep dark grunger/emo!!! Jackie, yuk to not getting in first go, poor you. When they took 3 different members of staff and 4 stabs in my chest to get in my port, I was ready to either run for the hills or grab the needle and stick it in their chest! You feel so vulnerable having chemo. Still hate needles! I was told the cyclophosphamide nearly always gets people right at the end of the dose. I was glad they did it last so I was almost done or would have made me nervous. Did it sting your nose? Funnily I was tol CMF is a much milder one and people have far fewer side effects and it was not pa ticular;y a sicky one, but I have not been sicky on either one. I have 4 steroids on each of the 2 following mornings and got the blobs all over when I just forgot the second day. So not sure why you didn’t have them. Did you get the vit B supplements? Enjoyed ‘the planner from hell’ bit LOL. Keep up the bacon sarnies for the second week, you need something nice to get you back in there. I always lie in bed and shout ‘I’m not going’ on the morning and wind my husband up, who tries his best to stay calm and say positive things. Hope the SE are ok for you.
Carol, thanks, it keeps me going to know I am being of some use to someone! I remember thinking how exciting when I cheered others on to the end, but with the slight runs and acid reflux tonight and another dose going in on top tomorrow it brings me down to earth with a bit of a splat! Still a ranitidine tablet and 3 minutes for it to work will see the acid gone. I will be excited when it is done and realise that I don’t have an appointment for the next poisoning! It is a bit weird.
So marathon Lily finally, 195 days later faces number 12 - about time too!
Big hugs, especially you other marathon runners. Hope you are all ok
Lily x x
Hi everyone,
Wow! Well done Lily! hope you have a big celebration planned, thanks for all your advice, still jotting down all ideas.
Im on my 4th epi next Monday, catching you up Jackie, interesting to read different ways of having CMF, im getting sweets etc at the ready.
A big hole swallowed me at the weekend extremely tired! We had our Christmas Day on Sunday, as Stu my eldest is off to Canada next week until April next year. Similar to you Carol will miss him but will keep in touch with skype etc.
Good luck to you all, keep the bugs at bay.
x x x
Hi,
just a quick post to say hooray hooray the last dose is done and I am sitting feeling pretty smug until the side effects kick in towards the end of the week. It is such a brilliant feeling to have got to the end and not given up as I threatened so many times. The onc was talking about 90% stats from having all of it and said he would be very surprised to see me come back after that. So please keep going through tough tough tough days and enjoy the nice bits in between as much as you can. I promise the final corner when you see the finish line is worth every minute you put up with. I am really a bit too manic tonight and goodness knows what I will be like after the steroids over the next 2 days.
ooh I asked about no steroids in some units for CMF and they said that is normal for many areas. I just was really rough on epi so started at a low point.
Right off to try to sleep and happy hugs all round but wish you all the best where you are right now. You can really really do this
Lily xx
Hi
Lily - you deserve to feel smug - it’s brilliant that you’ve managed 195 days - altho the runs and acid reflux makes it all sound less attractive!!! 90% stats sound good… very well done you. I’m trying to find some positive thoughts to get through 3rd epi tomorrow - struggling though. It makes me feel so rubbish. And the treatment goes on for such a long time - why do some of us get 7 months worth? (I’m not on a trial). Hopefully the cmf will be a breeze - well, I can keep telling myself that!! Hope all you girls are enjoying the good times and surviving the bad… I’m sure I’ll be needing you even more over the next few days. 3am steroid chats welcome!!!
Mivvi - fab news that you had a great christmas - what is Stu doing in Canada?
Hugs to everyone
xx
well done Lilly, you are so right to be smug. What an achievement… I look forward to my end-day. Carol, ill keep posting here for you as you battle epi3 . I don’t know if its helpful, but everyone here said it wasn’t as bad as no 2 and that’s certainly been my experience. Im nearly a week on now and none of my days have been terrible. Iv only had to deal with tiredness this time. I REALLY hope you get a better deal this time. If not, just keep posting and we will try and encourage you. hope everyone else is ok xxx carmel
Well done Lily for having your last CMF … am even more jealous than last week as once again mine has been postponed. My bloods were really low on Monday and the onc thinks I have a virus. He reckoned I would end up in hosital again if he gave me the chemo, with pnemonia or septacaemia, so am going to stay in and do nothing all week - which is just about what I did last week!! At this rate all you Epi’s will be finished before me! Good luck tomorrow Carol with Epi 3 - I found it much easier than 2 as well. I’ve only had steroids on the day of chemo, apart from once on Epi to see if it would help with nausea - which it didn’t! Hope you all stay virus/infection free.
Hi.
oh Lalala I am so sorry to hear that you are still not well enogh to have the next but have heard how terrible it can be if you get something bad and then you might have really huge delays. I remember reading about one poor girl having that and them putting lines in her groin in the ITU unit - yowee and people having 7 or 8 days in hospital to recover. Have they mentioned giving you a GCSF injection to boost your system after the next one, as they roar your immune system into action. One of my pals on here had one and her neuts went up to 14, which we didn’t know even existed. Might be worth asking, some are expensive so they are a bit mean with them in some units.You take lots of care and stay away from toddlers and anyone with a sniff to be safe x. better safe than sorry and you will still get there but in one piece!
Carol big hugs for tomorrow and another one out of the way and done forever. I know how you must be dreading it as it hits you hard like it did me but you will be so much better when epi is done I am sure and it is one of 2 of the biggest cancer busters so keep that in your mind as you go down the dark hole again. We look forward to seeing your little head sticking back up again very soon x. Carmel I am impressed and pleased you weathered it so well. I don’t know why some of you are so lucky and sail through. It was one thing after another for me. I even had artificial saliva and tears prescribed. I just kept thinking they had collected it from dribbly dogs and couldn’t actually squirt it in my mouth, made me gag to even think about it.As soon as I got the tears to help, I had watery eyes dripping off my face from then on!
hugs for tomoorow and all have a good or ok week
Hope I didn’t put you off your tea!
Lily x
HI ladies… hope you are hanging in there carol. rest, rest rest… Lilly i can certainly relate to the streaming eyes as i had them constantly after epi 1 and 2 but its so wierd that this one has been so much kinder to me. I do feel tired of course but not really ill like i did. Couldn’t work mind you! Im amazed when i nosey around some of the other threads to note that many are working through this. My OH did point out that as well as variable reaction across people, we are all recieving very different doses particularly in relation to the grades etc so that also explains why we all cope differently. Not to dwell on it, but i was going to be having prophylactic chemo until they discovered a load of node involvement which bumped me up to much higher chemo doses… apparently. Still I am amazed that i could feel soooo horrible with one epi and manage soooo much better with the next. makes no sense to me.
Iv been trying to walk for half hour everyday to combat fatigue and counter some of the munching and stagnating that preoccupies me. Anyway just been into town and parked away from shoe shop so we could walk to and from. Bought not one but two pairs of lovely shoes. OH treated me to one pair - I bought others. I’m so pleased with myself because i don’t normally splurge but haven’t bought clothes etc for ages and ages due to not going out much and not having much need at the moment. I must be picking up… starting to enjoy things again. So hoping for more energy next week so i can be ‘normal’ .
Lala, so sorry you’ve got to wait again for your next chemo you must be so fed up. Willing you to be bug free and well enough to be blasted. What a strange thought. xxx Carmel
Hi ladies
Carmel great post - love the idea of normal shopping … now Lily, about the dribbly dogs… said in my best teacher voice for 6 year olds!! Great post too - loved it!! Made me smile and that wasn’t easy today… epi 3 done and dusted - had to have my bloods done again - thankfully they were ok, but by then had got into the log jam that’s the hospital pharmacy and it took 5 hours … yawn.
Lalala - I’m so sorry too to hear about your bloods - hope they decide to give you the injection, it’s meant to help hugely. Make sure you ask.
Thanks for your support ladies, it means a lot. When I was in kept in hospital they gave me 4 neutropen injections to boost my white blood cells, which worked. In fact the first time they postponed chemo it was because I felt ill even though bloods were good. This week I felt ok ish, but bloods were bad, which concerned con so he decided to delay and see how my bloods recover. I think he intends to give me neutropen injections when I actually have chemo again! I’m feeling good at the mo anyway, so fingers crossed for next week.
Hi,
Carmel do you ( or anyone of course) fancy joining the cyber exercise support group on the chit chat thread I started. We set small targets to reach each week you want to do it, either static cycle, walk, whatever mode suits everyone. We are warming up for a couple of weeks by trying to complete 3 km before Sunday night and plan a cyber trip round Europe starting at the Channel tunnel, for a bit of fun and encouragement to start exercise in our own time. No passports needed or insurance!
Carol if you read my long other thread you can laugh/cry through all my mishaps and ups and downs along with some other great ladies who are now good cyber friends. My path through chemo was a big roller coaster too at times. Just think about how far you are through number 3 and which day it will be so much better. I kept a mini doary of Se which helped me plan around the being a slug on the sofa stage, dire constipation stage, etc. If you get it bad you just have to stop and go with it like a cork in the ocean until you gently settle back on the sand again on a very nice looking sandy beach. Lots of hugs, hang in there x. Lalalal some people just seem to have trouble with their neuts, I have no idea why but sorry you have this to worry about extra. Many people swear by the mannuka honey, mushrooms and eating brazil and walnuts I believe. I always ate tons of protein myself and rested all through the post chemo bit and switched my alarm off whenever I could to just nurture myself a bit. That will turn you around though if you get the jabs to boost your system. good luck.
Hi to anyone else I have not replied too and thinking of you. I am getting kicked in the stomach aches so the payback is heading in for the last time. I am so looking forward to eating chocolate again, whenever that comes back!
lily x
Hi Lily
Hope the stomach aches are less now - while you mention food - have any of you decided to go the non-dairy route? Luckily, I haven’t lost the taste for choc …yet, probably!! I love the idea of cyber exercise - and will definitely join you when I can… love swimming, so as that’s out of the question it will have to be the ex. bike. I’ll have a look at your post and join you there.
Hope you all have as good a weekend as possible
xx
helllllloooo, cyberchat exercise class, sounds interesting Lilly… like Carol I was keen swimmer ( not that keen but enjoyed a few lengths) so that’s reduced my exercise options. I will come and join you. I walked today actually but naturally followed it up with plenty of excess eating. Got to get a grip… cos I really know that keeping weight static is important for giving myself better chances. I used to rely heavily on exercise to counteract greediness but don’t have that option for much of the time at the moment. By the way I’m not being hard on myself… I blame being one of four versus OH only child status. He can so only have one chocolate… I have to eat the lot!!! God I digress… Hope you doing ok carol and Lilly on the latest/last blast and praying you stay bug free layla. Hello anyone else who hasn’t popped by for a day or two. night night xxxxx
Hi,
the gremlins are back for the last time so will be spending a lot of time looking at the grout in the bathroom tiles!! Enjoy your weekend.Take care
Lily x
hello ladies, been for walk this morning… now keen to get on with a few things as im feeling fit and well (ish) hope carol you are ok… in the ditch? Lilly you may be feeling rough too. sending lots of high spirits. Layla, any news on your wellness for chemo? Hoping that they blast you soon. Anyone else lurking… hope all well or well as can be expected. xxxx carmel
Hi,
thanks for your kind thoughts and like all dark holes you suddenly find you pop back up again. Feeling much better but being very cautious with what foods to eat for another day or two. Hope this finds you all ok or that you feel much better very soon. I will have my little op next Monday to take the port out, not looking forward to it and they have not told me what they will do, how long I will be there either. So not sure what I am in for but on the positive side I can’t worry even more about the scarey details. If they give me a sedative of any sort I will be out for the count for hours, as even the mildest things affect me really well. I can’t stay awake on 2 paracetamol even. Carol I have cut down on dairy just because I can’t face it but it is something that I think about. Trouble is I can’;t come to a decision. There were some really informative threads a while back so you might find something useful if you do a search or page back a bit. I do know that cows used for ordinary milk are given hormones but organic milk cows are not. I keep saying I will switch milks but haven’t yet. Not sure at all about that one
Lily x