Hi,
thanks for your good wishes and hope that all of us going in the nuclear bunker this week fare well. i can’t believe how many of us are on this now, wish you had all been around a little sooner so we were all nearing the final lap of our marathon. I had to take 7 thrush tablets this time to fight it off. I never recognise it soon enough as it appears just like acid to me for ages before I get the pain when it creeps across the skin. None of the usual symptoms. I have eaten dozens of ranitidine indigestion tablets this time as they work better on CMF than the stronger ones I have, not sure why. Anyway as usual I will be having a giant fried breakfast of fried bread, 5 rashers of bacon, fried eggs and toast before i go in to the unit. It helps me feel cheerful about going as well as lining my tum really welll before it gets the next hit. It also helps as I sleep through most of the treatment once the piriton goes in. I did manage to have reflexology last time as there was a delay but usually fall asleep before she gets to me.
Hope all you epi sufferers are at least cheerful that you are a step further on, it is the tough one but also tough on C so try to go with the flow and think how far you have come already. Sam try to get the colour out your wee asap as it irritates the bladder and can cause cystitis, I gave myself a target to get it out the same night by drinking all through the chemo dose and rest of the day. Well done and hope you feel a little more confident for the next one now. Then you will be half way through epi - hooray x! Carol glad you are back to normal. I found that if I really did nothing on the worst days of epi it passed faster but if I went out it hung around longer. Not sure if that would work for you too but worth a try. Enjoy the good bit now x.Lalala here we go for the next, holding your cyber hand tomorrow and hoping we both get in and out quickly.Hope the neuts are better if not ask about the injections. Thinking of you x. Carmel hope you are ok and lovely to have the children around, I am sure it helps you to soldier on through the worst bits with them there, I cried a lot on epi2 as well but not on 3. I think this is a good bit for you , so enjoy it until the next one x. Mivvi you are roaring along now and will soon have finishe epi and I hope will feel more like yourself again. I never checked my temp unless feeling unwell but it always stayed the right side of action stations luckily. My kids have been great as they are older and have stayed away when they had colds as a precaution. Even my son’s friends warn me and don’t come round if they feel ill. Have you had a bug x? Jackie you sound like I was on epi, but am I right in thinking that is finished now for you? Hoooooray if it is and well done. x.
Sorry if I forgot anyone, Julia happy diving tomorrow x. take care everyone and stay away from bugs
Lily x
Fab post Lily - enjoy your breakfast!! Can you cook one for me pls??!!
xx
Yippeeee still feeling fine - had my Nuerolast (or whatever it is called) injection this afternoon. Done the school run and been working too ( I work from home) so fingers crossed I will carry on OK. Thanks for the tips about drinking to get rid of wee colour, its fading fast
That’s great news - long may it continue!
Hi,
number 11 is in so one more to go. I am feeling really woozy though from the piriton, should sleep it off and be ok in the morning. How is everyone else?
Lily x
hi everyone… sorry for not posting individually targeted comments to everyone… those of you who manage that are just superstars!!!. I will at least say well done to you Sam, one down!!!. Also to you Lily for your fab posts and doing number 11. Hope its not too grim. My absence of course was due to me having too much fun in York shopping followed by a catch-up with old friends on Monday. To be honest it was all a bit tiring because this BLOODY cold has lingered and I still am not myself… EPI 2 is a git. Anyway i took my chances knowing that I go back under this week and wanted to to have some fun. So glad i did.
I was dreading today because last time i went for my bloods i came back with black arms which i found very unsettling even though the bruising wasn’t actually painful. My results last time were also borderline which wasn’t great news.This time my veins are aching and i was nervous. Anyway fear not… all went well. My stats are lots better than last time, no borderline for me. Despite my cold they are happy for me to have EPI 3 so onward i go on Thursday. Good news even though its not if you know what I mean. Anyway for any of you who have had my problems with bloods, I took some advice from an old hand which was to take a wheat bag with me that Id heated up in microwave before leaving the house. Apparently my veins were nicely plumped up so that appears to have done the trick for me this time. Thank goodness.
Hope those of you that are in the ditch aren’t there too long. Ill be with you from Thurs. I didn’t manage to post last time-I felt sooo bad. I will try to get on this time.
Sending lots of love and hugs to all you lovely people who are sharing this journey with me… xxxxxxxx
carmel.
Hi all,
Well done for having no 11 Lily - I’m jealous. I woke up feeling really rough with a raging fever yesterday - went to 38.6 at one point which I found a bit scary. I phoned hosp and they said to come round anyway. My bloods showed I have an infection, but my white blood cell count is healthy, so they decided to send me home with antibiotics and delay chemo till next Tue. Poo - as this means my last chemo will be 23rd Dec now!
Hugs to everyone suffering at the mo.
Hi
Lalala so sorry to hear you are not well but most of all the delay.What a rotten time to finish. Keep taking the tablets and try to look after yourself. Glad you were not taken in as that would have been more iv treatment and investigations, you are much safre at home. I am creeping around trying to avoid anything and rush out of shops if I hear a sneeze, lots of bugs about apparently. Wrap up and keep warm x.
Carmel sorry to hera you are fighting off a cold too, as if chemo Se were not enough to put up with. Hope you feel better soon. Good luck on Thursday with number 3, the wheatbag trick sounds good. I always have warm things on too as the air con in our unit blasts you if you sit in the wrong chair. I am ok today. I am always you if they delay my treatment and had a 2 1/2 hour wait this time. Woke up ok and will be great until the weekend but CMF is nothing like epi, much milder but hangs on for longer.
Take care everyone and keep smiling if you can.
Lily x
lalala,
sorry to hear you are poorly and the chemo has been put back… I’m beginning to feel as you do, this would be a blow even though we all feel like we want a break. Ironically a break only comes as a result of some other thing to deal with, so not a break at all. Im getting chemo number 5 on 23 rd Dec so ill be with you for that one… I mentioned earlier that we’ve booked to go out for dinner in anticipation of not feeling so great… just an idea. Anyway hope the infection is cleared as ap and you feel a bit better.
Carol I’m guessing you are not so good. hang in there… or maybe you are having a few good days. Sam how are you feeling? lilly hope 11 is manageable. Not sure where others are at as I write this but sending lots of good will and support to anyone who is feeling rotten and go girls to any of you who are making the most of good days. Thinking of you all. xxxxxxxxx carmel
Hi ladies
So envious of number 11 too!!! Hope it all goes well for you - and cyber hugs for lalala, must have been scary. I find the unpredictability of this so hard to deal with (maybe that makes me a control freak!!!). Dont worry about the 23rd - perhaps have a special Xmas on a different day - we had one in October with our 3 lads when the eldest was emigrating to Oz as we knew we wouldn’t all be together for a fair few years. Mad but fun.
Thanks for the good wishes from you all again - I had my first “normal” day yesterday so I met youngest son for lunch in the sun on the beach in B’mth! It was fantastic - nearly forgot all the bc stuff! Good advice Lily to rest during the bad parts of epi - I haven’t been able to get enough sleep this time
zzzzzzzzzzzzzzzzzzzzzzzzzzz
ps Lily - will you be going back to school after Xmas?
xx
Thanks ladies, am feeling a bit better today but temperature is still a bit up. Have been in bed more than when recovering from CMF, so was probably best I didn’t have it. I know having treatment on 23rd is no problem really, it was just that I had set my mind to finishing just before christmas with the hopes of Christmas day being a normal day … but he ho, we can celebrate another day if necessary as you suggest Carol. The thought of going out the day after chemo does not appeal as I reckon I’m gonna be the target of nasty bugs and viruses now my body is weakened so much. I’ll have to teach my girls how to make the roast!!
S x
Lunch on the beach sounds wonderful Carol - glad to hear you’re feeling normal again.
Hi All: Haven’t been on here for a while, so will do catch up.
Lily we have communicated on the other thread – good buddies – but doesn’t hurt to say again – we are nearly there. One more next week and we are done!!! I always managed to get rid of the pink pee by the end of the day although drinking all that water made me get up at night but with the steroids keeping me awake it didn’t really matter.
I checked my temp for the first few days but as it didn’t change much, didn’t bother unless I felt grotty. You get to be very cavalier about things when you are not having any side effects – lucky me, apart from the hair.
Lalala: sorry to hear about your delay, what a b****rd finishing just before Christmas. Never mind, keep well and avoid the contagious ones. I’m working two days each and get very p****d off when people come to the office with colds – like one guy today. They all know about my immune system but they are blokes, what more can you say?? Been chomping strepsils all afternoon hoping to keep his germs at bay, going home shortly.
Keep well everyone – we all get there in the end.
LOL
Julia
Hi,
I know how you feel hearing about others being so far through when this is a long treatment. I felt like that for ages and so many new people came on and finished before me, that is the real challenge of epi/cmf I think. I found the middle quite worrying as I had got used to, well rather I could predict, the epi effects and was really quite scared of changing to 3 drugs. I had a reaction on my first which made me even wobblier but it was easy to fix. Different units give the Cyclophosphamide in different ways. I had to have mine diluted and given by a drip over an hour instead of about 10 mins hand injected by a nurse. Julia has hers in tablets. I found getting half way and having 8 to go a real slog but when you get to about 3/4 it gets really exciting and a great big finale finish too. Then you will have had 4 different drugs and no-one can say which drug gets the C, so you have 4 chance. That is the little bonus for the longer routes I guess. it is swings and roundabouts for whatever treatment you have. I do feel a bit guilty for being on 11 but not enough to go round again!!! This girl is ready to get off this ride! I will try to cheer you all on through the course and hope you don’t fare too badly. Having a cold while on chemo is the pits from what I hear. It is worth asking about the flu jab as you will be going through the winter. I have not been brave enough to go yet!
191 days on chemo done and 5 left to go. If I can do it any one of you definitely can too. Just don’t look too far ahead, just look forward to the next good or ok day.
Take care and get well soon everyone. Hugs.
Lily x x
Hi gals,
just checking in. Glad to hear about the beach date carol, sound lovely. My kids were lucky enough to stay in sandbanks when they went away for half term. That’s not far from you i guess. Iv never been but apparently its an amazing setting. My sister-in-law’s great grandfather (hows that) put a caravan on a bit of the beach a hundred years ago before all the fuss and then build a house in the thirties. what an amazing story eh?? Anyway the kids had a ball there with their cousins even with the bluster.
Can’t believe how much better I’m feeling than last time. Had my epi yesterday and so far so good- I can function. My bad days have been day 5/6 so i won’t speak to soon but iv felt better today than the equivalent day of last cycle so im grateful. Thats what happened to Jackie I think and others iv heard.
any way sending lots of hugs to those that need them and bye for now.
xx carmel
Hi ladies
Hope from the lack of chat you’re all having a good weekend!!!
xx
Hi
Been away for the weekend to my younger daughters. She had a babysitting job lined up for us last night for 2 3/4 year old granddaughter. Had a great time, but now back home and starting to feel anxious about my first cmf tomorrow. Hoping that everything goes alright in the unit. Bloods were fine on Friday and they managed to get in my vein first time, but I now have one vein that is constantly aching. I think it is the one that they used for the first two epi. Onc was reassuring, not, when he said that the veins die off but we don’t really need those ones apart from when having chemo. He also said that it happened to his mum, but she is still around 25 years later, so that at least was reassuring. Onc also agreed to me having flu jab as long as bloods were ok, so had it on Friday afternoon and so far no side effects, so hopefully I will be at least free from flu this winter.
Anyway thinking of you all again this week. Good luck on Tuesday Lily with your last one. Don’t forget the balloons.
Jackie xx
Hi,
Jackie I know just how you feel, I was anxious about changing drugs, better the devil you know sort of idea. The M is bright yellow and weeny, hardly gets up the tube on its own and need the next to push it in. You have to take vit B supplements after it, which are 6 tablets in all, one taken every 6 hours roughly. Try to remember what time you have the chemo as you start taking them 24 hours later. They are easy and nothing to worry about, I was always forgetting mine! The F ( appropriately named) is 5FU and that is the one that gives you chemo brain, I really noticed the effect of this one on my memory and it is clear and put in quickly. The C is the one that some units do differently, I believe there are 3 different ways or timings. Julia gets tablets, the other 2 ways are iv as usual. I go on day 1 and day 8 and have exactly the same each time. So all 3 drugs in the vein, well port for me. I have a reaction to the C, not bad, it gives people swimmers nose, just like water went up your nose. I react to it a bit more, so have it in a drip, diluted over an hour and piriton, instead of 10 minutes hand injected. Most people are fine and it was not a scarey reaction so ignore my part. Thinking of you tomorrow.
I just have bloods then the big finale on Tuesday. I wish I could make it all your last days on chemo too and hope that you have a good week.
Lily x x
hi ladies,
Lilly how amazing that you are nearly done. Hope your bloods are good. Jackie you are so good to be babysitting. When i have a morbid moment I feel sad that I might not be able to babysit for my grandchildren… Being that bit younger with this diagnosis, I know i have a long way to go. Iv recieved so much grandparent support with my two and Id hate for them to miss out on that when they have kids. Im always amazed when grandparents aren’t interested… Anyway less of that.
On a positive note, this bout of chemo as i hoped is going the best so far. what a relief. xxxxxcarmel ps christmas internet shopping beckons