Hi everyone,
Gosh we are all downhill again! I am in my good week so have been trying to fit everything in before next Tuesday, when I have my last epi. My poor MIL is very near the end, after a sudden deterioration, so family flying in from US this weekend. They all plan to camp at ours for most of the day so will have to try to still take it easy. I just hope it does not all happen just as I get my next dose as I will be unable to help at all. My vision goes every time and I cannot see more than 2 feet ahead of me. Cannot even read the sky titles on tv from 3 feet away and no chance of driving. I did try once and hit the house on the way back in the drive, so i took that as a warning to stop. She has asked all of us if we would oblige and help her on her way. Told her then I would be in jail with cancer which amused her. Macmillan nurse told her, she would lose her job and starve! Although it will make it easier knowing shewant to go, it is getting harder not to wonder about myself watching her fade. I try to keep the two things separate in my head which is not always easy.
Nicky I am sorry that you have another delay, at least they are doing something about it. The injections sound a much better plan than reducing your dose, I agree. The people on the accelerated part of my trial have those and neuts are back up to have another dose after only 2 weeks. Extra well time would be brilliant. Does that mean you are in again on Thursday 24th? I will miss you being bouncy and optimistic but after this one I go 2 weeks in a row, then get 2 weeks off so I will get out of step anyway, as it is 4 weeks overall for each dose.
Angie, snap, my family did exactly the same, with jewels sewn in their hems and changed their name as it was in anti german times over here. I agree it is worth knowing, not sure how easy it is to convince them to do it though. Poor you with the puking and trots together. I don’t think any of us realises how fast and easily our health can change, because we are probably a lot more vulnerable than we realise. It was cucumber that got me first time and then the fruit juice enema! Hope the good start made up for the rotten end to the night and that you have picked up now.
Hope all you other ladies will be feeling much better soon, you should all be popping up as I go down the hole again.
We need to keep fighting away through the tough bits and making the most of the good bits.
Hugs all round
Lily x
Lily - so sorry to hear that your MIL’s condition is getting worse very quickly. The only hope in all this is she doesn’t suffer for too long and that she gets her wish that you all help her on her way. This, I’m sure, will comfort her and maybe enable her to let go more easily? Don’t overdo it with the other relatives who are arriving although it is difficult if they are staying with you. Also I’m sure if it’s possible you will be there when the time comes but there’s so much out of your control at the moment you mustn’t beat yourself up over it if circumstances don’t allow you to be. She will know you are there in spirit even if not physically. Also try not to compare your situation and hers - very difficult and I’m not sure how you stop those thoughts but try not to let the imagination run away with you - it’s a bugger I know.
My next dose will be 24th so we’ll be mooching around feeling sorry for ourselves at the same time. I’ve managed to wangled the 1st appt of the day, 8.30, no onc to see so hope it all happens on time and I’m out of there by lunchtime - sooo unlikely 
I hate it going in later in the morning, all the waiting and not getting back till late afternoon, mind you I’m not sure what I’ll do with my afternoon. The one thing is to get my steroids this side of lunchtime which may help my 1st night’s sleep - I’m usually awake on and off all night and banish hubby to spare room for 1st 4 or 5 nights so I don’t disturb him (read that as his snoring doesn’t disturb me!)
Sounds like you should give the healthy foods a miss, the meringues don’t cause you any problems do they? Point proved!
Have a good weekend, if circumstance allow and I expect full support from you this time on Thurs - ha ha don’t mean that - guess you’ll still be peeping out of the black hole like I usually am.
To all you other lovely ladies take care and have a good weekend if you can.
Nicky xx
Morning all.
Today has started much better than yesterday so am going to cram the work in.
Lily, you take it easy won’t you. You don’t want to end up isolated with low neuts with all this going on too so please do let people know that you have to rest much more than usual so that you can be there when needed, second everything Nicky said, it’s just having recently had the inlaws around I can say that family don’t always pick up on subtle hints like yawning and kicking them up the butt and out the front door, only joking didn’t try that.
And remember you are different people. When the lady in our village died of BC a month ago it hit hard because there was so much in common, but in reality there was much much more that was different. We each have our own fates if you believe in that kind of thing. If you have some rose quartz around put it in your pocket, supposed to be healing apparently, it’s all a bit new age but hey it’s not gonna hurt.
Lots and lots of love to all and have a great weekend.
I’ll give you a heads up on Wall-E tomorrow. Looks good.
Angie
hi everyone
my get up and go, as got up and gone, anyone else felt like that 8 days after last chemo, im desperatly wanting to go away at weekend, (so is hubby,and my sister and hubby are coming too.) im trying not to think ahead but its hard when you want a bit of fun.
lily
so sorry to hear about mother in law, it must be difficult but at least it sounds like you both have a good relationship, which is very valuable.
nicky 08
was really glad you had good results from scani, dont know if i said before
my brain feels dead at moment. so hard to think of anything, this must be the chemo brain, they tell us about.
i am completly lost when you all talk about neuts? what is it about?
i have been lucky that my blood levels have made it possible for all the chemos to go ahead ( mind you i dont feel so lucky at moment, could do with a rest)
hope you have a brilliant time, while you can, good to know your enjoying time when you up to it.
lots of love to everyone, sorry im not so positive at moment.
lorraine
Hi,
thanks everyone, great friends as always supporting me. I am offering the visitors a couple of meals and then told them I would need them to look after me if they came round. They are very kind but no help at all clearing up, etc. Feeling a bit tired tonight. Ordered MIL a V shaped pillow, as she keeps sliding down the bed and it has been a great hit. It was nice to be able to do something useful. Nicky she actually wants someone to do the deed! The doc was told and had given her something to help her cope mentally. I think she is perfectly clear and these emotions should be acknowledged not covered up. This is when I get too involved because I feel so strongly that she should get what she wants, not that I would do anything more than try to understand and hold her hand. Asked hubby if he would kill me if I asked one day, he said no absolutely not, so one of you will have to come and do it if I get there too! This sounds very morbid but as she takes control of her life again it is very reassuring in a strange way and I feel I am the only one that understands this. Not sure if I have explained that really.
Nicky I know what you mean I like to have an early appointmnet, especially with the extra cold cap time to add on. If I am quick I can eat lunch out after it too. I will do my utmost best to cheer you along, but total sympathy and empathy might be more like it. I am fed up. Someone offered to let us use their holiday home by the sea for nothing, just available for some dates. Guess what? They time exactly with my first 2 double doses. The first date is either side of the 2 lots and the first one so I don’t know how I will react and the second my son is going back to school to start A levels! How disappointing is that? Pooooooooooooooooo! Angie I have a big chunk of amethyst by my bed, which is also my birthstone. I don’t mind the crystal ideas actually but wouldn’t rely on them. Everydaymatters, I get what I call the slug faze betwen days 4 and 8 and now just give in to it or feel terrible. It might not be too bad to go away if you say now, I cannot cook, etc and may need to just rest for part of the day. I found even a day by the sea recharged me and was worth the effort of going. Not sur if I could have packed though. Hope it works out whatever you decide to do. Neuts are neutrofils a part of the blood, and tell the level of immunity you have. So when they crash you would have no resistance if you caught a bug. They have to be at least one or 1.5 for some drugs or your chemo gets cancelled and you go back a week later. Each time they write mine in the chemo diary they gave me, along with white blood count, tumour markers, haemoglobin level, platelets. I am fascinated by the science and quiz them about how it is all going.
Hugs all round and please keep joking, I do enjoy a chuckle before I go in the bunker again.
Lily x
Hi Lily
I guess I know what you MIL means (having not been there I don’t actually know), I’m a control person and would also like to have a say in what happens either at the end or more or less every day! I would be Monica in Friends if I had to play a part! Hopefully it won’t come down to her being too distressed. We will obviously have to accept your wishes, if your hubby won’t, and find away to get you through cyber space - by then I expect it will be all the rage
Stick to your guns with your guests. Maybe leave things on the table or wherever you’ve eaten and see if they will help by being embarrassed - you can always invent some chemo ritual that you have to do which means you can’t touch dirty things. No one knows anything about chemo unless they’re having it so you won’t get caught out!
I know how you feel about having a break. I’ve just had to cancel our w/end in Brighton as it will now be my chemo w/end. Tried to re-book for a week or so later but the same hotel, and others are fully booked. I then thought to check on the Brighton website what was going on that w/end. Seems there’s a Gay Pride get together! I’m fine with it but hubby was a bit worried! Don’t worry he’s definitely not homophobic but we had a chuckle. So now need to find another seaside town to catch the breeze in - that is my mission today. It’s so difficult to sort out dates to do things so far in advance and it really is poo that the holiday dates you were offered are off limits due to chemo. You’ll want to be around when you son goes to college and I wouldn’t risk things with the 1st dose as you won’t know what’s going to happen. I think we will really need to support you during that time - I would find it very difficult to be back at the hospital that many times to get chemo. I even felt a bit nauseous when I went for my blood test on Weds - let alone actually having chemo. My four weekly regime suits me quite well in fact and gives me more good times before the bad ones hit. Maybe you should go get yourself an infection and put it all off for a while!
Take care and enjoy this weekend, put you feet up if you can and hope your MIL is feeling OK - she is very lucky to have such an understanding DIL.
Nicky xx
Nicky.
Gay Pride is so much fun, tel hubby it’s OK, there’s so many fit men around that weekend no one will be looking at him (no matter how good looking he is, some of the outfits are outrageously fun) but it is busy and I mean busy.
Have you tried going Eastbourne way, there some lovely gentle walks (and some not so, you have been warned ;).
At least you’ve and Lily had the sense to make plans, everytime I try and be realistic and not make plans, and just play it by ear someone finds something they need me to do ie look after dog etc. I’ve finally dropped all pretences and said I’m busy next weekend, they said doing what, I said there are several options but it’s not staying at home looking after your ****ing dog… sorry, still recovering from last weekend I think 
Not sure what you mean by doubles doses Lily, is that part of the Tact2 trial when they start doing you every 2 weeks or something.
Anyway Lily. Hope your MIL gets to move on to her next life or however she sees it when it suits her and how it suits her. It’s a tough subject but one I’ve always felt so strongly about, my friend who used to be a vetinary nurse put it so eloquently “Why is we can help our beloved pets leave their lives with dignity and peace but not our nearest and dearest”. Can’t argue with that, and having helped my cat do exactly that earlier in the year I feel even stronger about it now, certainly the right thing. So I will instead ask kindness of any higher beings, gods or whatever your MIL believes in for her instead. Tough time for you though, hang in there and try not to dwell on things that may or may not come to pass. You should be enjoying this beautiful hot scorching summer we’re having instead (just proving I’ve finally gone mad:)
Lorraine… Hope that brain cloud lifts for you soon.
Did go and see Wall-E last night, yes I braved a cinema full of children! It was so much fun, and so thought provoking I’ll not say anymore so I don’t spoil it but like all pixar movies was dead funny and touching. Best one yet I think.
Lots of love to you all.
Angie
hi everyone
managed to pack this morning, still feeling like a zombie, but decided i might as well feel a zombie in Portsmouth, at least im not known there. and if i didnt go,id probable be feeling better the next day and would have missed the chance. supposed to be a sunny weekend, so i hope all you fit ones have something planned,.
do you know i dreamt last night my hair was back, and the first thing i thought on waking was ( i must wash my hair ready for hols.) then i looked in the mirror.
ohhhhhhhhhhhhhhhh! eyebrows are going now and eyelashes. (anyone tried false eyelashes) can you leave them on for a few days.
but how strange hair growing back down below.
lily
i will pray for your mother in law, it must be so hard for you. like you say all you can do is be there for her.
i think i would want to go to, this illness is so hard at times, and if you know theres no hope, i should imagine you would just want peace.
nicky
wonder why you keep having trouble with bloods, have they said. ive been lucky mine have always been ok.hopefully yours will be next time, a least its giving you breather
take care everyone
lorraine x
Hi,
can I thank you for being able to talk to me about such a difficult subject, as i rather forced it on you, I think. I agree totally with what you say Angie and despite howling the place down, did the right thing by our last dog. The visitors are the brother and his wife, of my MIL and even older than her, who have come for a last visit, so I feel sorry for them too. Her brother will not believe she is going, despite her fainting twice today when the nurses tried to wash her hair to make her feel better. He said well I will say she looks a little thinner but she seems cheerful!!! I douby she is more than 6 stone, if even that and is about 5ft 5in. It is worrying that he is putting the rosey glasses on and not acknowledging it as he has a heart condition and is here for a month more.
Angie I get epi 4 on Tuesday and then I move on to CMF. I have doses of all 3 drugs on 2 Tuesdays in a row and then get 2 weeks off, before it repeats. So although I have 4 more sessions, I actually go in the unit 8 times for the second half! That is why I am getting jumpy and threatening to jump ship before no 8. If I react the same as on epi, my first ok day I will be going in for another dose, I can see myself being dragged out the door by my hubby!!! Loved Nicky’s idea about the infection, that could be my few days away from home!!! Hope not.
I had a grade 2 tumour, lumpectomy, with no nodes involved. So my treatment of 8 doses seems to be more than other people on the site who have 6 treatments, some of whom were unfortunate to have a higher grade or more spread. I am seeing him after this next one so will have to think of some good questions to get to the bottom of it. Would you do 2 extra doses for an improved prognosis of say 1 or 2 %? Just interested in your thoughts, it may not be as simple as this in reality. Nicky/Monica you are right I am going to be a right pain through this and will eat up your support!!! I will go a bit Phoebe! I was really sorry about your lovely trip, I had not managed to work out that you would miss it now. That is so mean, try really hard to fing somewhere else. You could try the big chains like Marriott to just put in an availability search or go to one of the last minute sites and try to find a bargain. I am just going to leave it to the last minute and see how it pans out, it is so late I might as well book when I know I can go, if at all. Hope you get your trip.
I am hoping to see Mamma Mia and dribble over Pierce Brosnan and Colin Firth on Monday, if the showing times fit in, got blood tests for no 4. Won’t be able to jump the queue this time though, so in for a long wait. Glad you had fun watching WALL-E, laughing is good for you. Have you been trying to boost your neuts this time?
Other friends on here, hope you are ok. Lorraine did you go in the end?
Hugs
Lily x
Hi Lily,
I had a stage 2 with one lymph node involvement and am receiving 6 FEC treatments followed by 3 weeks of radiotherapy and then tamoxifen, Are you on a trial? and what is the difference with Epi and CMF to FEC? as it sounds as if your diagnosis was similar to mine apart from the node. This is all very confusing isn’t it? I would definitely be asking the Onc some more questions. I am going to be asking mine some as I read that tamoxifen after radiotheraphy is not deemed to be the best course of action oh if only it was all straight forward and we know what we should be doing with complete confidence (as if there is such a thing anymore as confidence) sorry I sound a bit off balance today.
thinking of everyone which makes me feel not so alone
Bevy x
`Hi ladies
Lorraine - I have no idea why my bloods are so cr@p! Guess I started at a lower point to begin with and they keep getting lower, frustrating but I don’t think there’s a great deal I can do about it. I will put up with the extra injections, me, the human pin cushion, so I can get over these chemo’s before Christmas! I feel fine all the time (except just after chemo) so there doesn’t seem to be any sensations or felling associated with it. I hope you got away for the weekend and got some fresh sea air and a bit of a break from the drudgery of home life and chemo! Have a good couple of weeks now and hope you find out what happens chemo wise from now.
Lily - very difficult situation with older relatives, I think they all think the best and have problems facing reality so I don’t envy you. Really hope they don’t tire you out too much. I’d be asking questions of my onc if I was on your trial. What is it hoping to prove/disprove with the different arms? If other arms are having different doses/schedules surely they aren’t at any greater risk than you from BC returning? Although your results couldn’t be used if you changed is it possible to have the same treatments as another ‘arm’ that aren’t so draining on your health? I think there has to be a balance with how YOU feel and how YOU can deal with what seems a very intense treatment and how it improves any prognosis. When I had my 1st dx I had very similar to you (WLE, grade 2, no nodes, rads, plus Tamoxifen and Zoladex as my hormone therapy) and I was told chemo would present more risks than benefits so was advised that it wasn’t needed. Therefore you’ve already had much further, intense treatment than I had even if you stop now. And after my recent results showing what 3 sessions of chemo do to an existing tumour think how it would have mopped up any single cells that are hanging around? Have no idea if this helps or not but I really think you have to decide how much you can bear and to what extra benefit overall? Not easy but neither do all the extra sessions of chemo sound either.
Angie - thanks for your recommendation of Eastbourne, it is an alternative we looked at having seen a nice boutique hotyel which is more up our street than chintzy old fashioned types, so may well head there. We will avoid Brighton largely due to extra numbers of people being there not because OH will get picked up
Bevy - hope you’re feeling OK - we all seem to have some down days about the same time you are after chemo, you will pick up and I hope it happens sooner rather than later.
Take care all, plus anyone I’ve not mentioned
Nicky xx
Hi everyone,
Yes I am on the TACT2 trial or I would have been on the standard treatment in my area of 6 x FEC all done in 18 weeks. I get 3 weeks of rads after this and 5 years of whatever they think at the end of this, not decided yet. The only difference in drugs is the M which is methotrexate, a drug used for lymph node cancers! There are other differences because the dose of epi is much higher and overall the total epi dosage of the 4 is above the 6 on FEC. I have not got onto the next stage so no idea of the doses of those. The Epi and CMF is standard in some areas instead of FEC, it is not just in the trials. A computer randomly chose which arm of the trial I had (there are 4 different regimes in total), and gave me arm one, the longest course. Arm 2 has the same drugs but they have accelerated epi, going every other week but get GCSF injections for this. Arm 3 and 4 have epi and then take xeloda tablets at home for the second half. One arm is again accelerated through the epi part. All the trial arms have 8 doses but the onc said straight away you can stop at 6 if you want, I would be happy with this.I need to discuss this carefully when I see him. I am not sure that you can have the tablets outside of the trial, certainly not on the NHS. The trial is to improve the survival rate of women from BC and to improve their quality of life while on it. All options have to be at least as good as the standard treatment and if there was found to be a worse effect on one group we would be pulled straight off it. I was told that my onc only goes on trials that he thinks look promising and that he really likes this one, so I put my trust in that. Also I really like the idea of doing a little bit towards research, having 3 daughters, who I have now thrown into the firing line. I guess I would not have such good chances if other ladies before me had not either taken a chance or done their bit. I probably jumped in abit quick but dreamt I got arm 3 and thought it was a pemonition. Silly ! Nicky, the more I hear of people who had a good prognosis and then had a recurrence, the more I am grateful to have been given the chemo. I am so sorry that you were not lucky first go but so relieved that things have started to turn now and hope this chemo sees the blasted thing off for good. My friend was grade zero and only got surgery and rads and hers was back in 3 years. They just don’t know who will and who won’t so if you are under 50 in my area you get it now, almost without exception. You can only go by what the experts advise but I agree lots of questions too, if only to understand why. Have you found a hotel you like?
I had a lovely weekend. My eldest daughter had secretly planned a picnic in the park for lunch on Sat and had gathered all her siblings and my Mum and done all the food too. We managed to avoid the rain and it was so nice, nearly made me booo. Tonight my visitors took us all out so no cooking Sunday lunch. hooray. Off for bloods tomorrow and last epi, if ok on Tuesday, my half way point.
Hope you all had a good weekend and Nicky good luck on Thursday. Lorraine hope you are better. Hi to everyone else who reads or posts here.
Lily x
hi everyone,
thankfully feeling better today actually woke up feeling normal and then realised again what was happening in my life. Still I think when we are feeling physically better the mental state is better or it seems to be with me anyway. As you say Lily it is important to take part in trials for the future generation and people have done it for us in the past. I took part in a micro bubbles trial to isolate the sentinel node which proved to be a very uncomfortable and painful experience and I learnt during the procedure I was the first woman they had every done it on! wish they had told me that previously but I have a daughter and just kept focusing on her. There was great excitement at the time in the room and after the initial surgery but although a lot had been learnt from the procedure they still have a way to go. Still if we can all do our bit just maybe they will get closer to learning how to stop it all happening.
Bevy x
Hi Angie - thanks for the walk details, will check it out. Just need to check out the cancellation policy of the hotel we’re looking at as I may suffer like Lorraine after FEC 4 - let’s hope not and no offence Lorraine! I’m afraid you are my guinea pig at the moment until you change regimes. Hope it’s not as difficult as FEC but I expect they all are in their own way otherwise they’re probably not doing their job.
Lily - hope all goes well for tomorrow and if you are getting scan results i hope it’s a big fat zero. Also hope you get to talk to your onc about your concerns with the next part of chemo. Glad you had such a lovely weekend - it makes all the difference just before the next chemo doesn’t it? And no washing up or cooking - how good is that? Hubby and I went out on Fri night for a restaurant meal which I really haven’t wanted to do up to now. We had a quieter night in on Sat and then packed my youngest off to France for 2 weeks on Sunday afternoon after a BBQ at lunchtime - can’t believe it was our 1st one of 2008. What is going on with the ‘summer’? Although I must say I prefer it being colder at the moment as couldn’t put up with wig and headwear if we were going through a heatwave. Sunny and breezy is how I like it. Hope MIL is doing OK at the moment and not suffering.
Lorraine - hope you’re feeling better after your time away and Bevy - you’re doing really well. Don’t overdo it though, if you’re feeling OK play it up a bit and get some extra TLC Wow your micro bubbles trial sounds interesting if a bit painful - what does it involve and what are they trying to discover? I hope they gave you a badge to wear after - No1 in UK!
Take care all those on chemo this week and all those on way up.
Nicky xx
Bevy… you brave thing doing a trial like that. Well done for taking the risk. Glad you’re coming around now. This will all set the tone for the rest of it. Being a complete science and information junking (I am a programmer, software engineer with more than a passing interest in things like quantum physics I am running m own experiments on myself. It’s a trial of 1 but I hope to have perfected Dosing Angie with FEC100 by the end of August LOL. I’ll share the report
Lily. Can you not agree to doing 6 and then see if you can still face the final 2 after that? I thought that basically we patients cen technically opt out ant any stage, eg refuse treatment. In your shoes I would be asking the onc what if I do 6 and then decided about the last 2?
Personally I think I’d finish it for the sake of 2 doses as I could then take some pride in having done the trial and not only done the chemo but taken part in a trial, but then we are all part of the adjuvant database data collection as in our outcomes will all feed into the stats in 5 and 10 years from now anyway so I wouldn’t feel that I’ve failed mankind or anything if I didn’t make it to the full 8. You never know you might suffer less on it than you have on the Epi, it sounds like a more drawn out but not as bruttal approach. 1 massive dose of epi, not suprised you’ve had more side effects than me!
Hi,
the rotten site logged me off and lost my post, so now will try to remember a shorter version!
Bevy I hope you feel happier today and that you soon feel well enough to have some fun. Very interested in the bubble trial. I had sentinel node imaging and was radioactive, still have a blue boob from it.
Nicky, we have only had one bbq too, rotten weather. Hope it picks up when you go away and that your plans are going ahead. At least I won’t get caught out by the weather improving in Sep as I go back to school, this year.My research nurse rang unexpectedly today and was in a panic with such a quick call and results due. She was just ringing to see what replacement drugs I need, no results back yet. She said don’t worry AGAIN! You’re right I do feel better about this dose after my nice day.
I will miss you all when you move off chemo and I chug on till Nov.Angie I was thinking along the same line. Check out if stopping at 6 makes much difference and then just see how I cope with it before making a final decision. The trial will probably find no-one sticks out the 28 week one!!! Well it is a quality of life trial too so that might be a consideration. I will buy a copy of the Angie report! By the way I get 178mgs of epi each time, not sure how that compares.I have some stiff muscles, does anyone else have that? Feels like cramp in my arm slightly above where the only epi that went in my vein was. Also the calf of my right leg.
Hugs to you all and I am dipping into my dark silly faze so lets see what no 4 decides to surprise me with!
Hugs
Lily x
Morning all.
Hope the dark phase passes quickly Lily. I’ll stick around and check in on here until everyone who started around the same time has finished. I’ll tell you what side effects I’m not having Lily so you know what’s not coming if that makes sense I get 160mg of Epi as part of the FEC100, 800mg each of F and C. 800!
I’ve been getting cramp too, it is a side effect. I find gently stretches and warm baths the only things that work, although I think cramp is sometimes cause by minreal deficiency eg salt, which is why you get it when exercising. There’s no way I’m short of salt right now LOL.
Hope you get the results soon and I hope they’re good.
Right back to it for me, OH’s birthday tomorrow and an escape plan is forming, hence him filling the final leaky spots on the campervan right now. Escape to Borrowdale is planned. When this is all over for us all (this stage of treament that is, not our lives LOL) we should all take over a YHA hostel and have a hoot or some other mad plan, OH’s and people who’ve supported us welcome, miserable people or thos who told us to cheer up, be positive etc not so much
Lily I should mention that there is a risk of thrombosis with the FEC and I think it might be the Epi part so do mention the cramps just in case but I doubt that’ll be the cause, it’s just the drugs (just, like their some kind of mild paracetemol LOL, yeah right).
On with day 9 for me. Manuka and chicken soup on the menu today.
Angie
hiya all
Soz havent been in touch for a while - hope everyone doing as well as possible!
Lily - hope it goes okay today and hope you get your test results. Prayers to your MiL
Vertangie - good luck with the birthdya trip, soudns nice! hope the genetics goes okay
Nicky - hope the bloods come up.
Havent been around as much as had a bit of a struggle with lap top and been not on top form! Genetics went okay but was hard seeing all the family history. There’s usually only a very small chance of finding the BRCA gene but they think with the history they might be able to find it in me were just apologetic that couldnt find it before hand which could have been preventative for me - but thats why I want to do it if it can identify in others in family them tryign to exctract two tubes of blood tomorrow will be more than worth it. Been really down and tired and nto picked up much, think with me its jus the anticipation of new drugs and dreaded what the Tax will be like - Im tippytapping here with black nails and sold its was advantagous. Anyhow enough twining, hope everyone doing as well as possible. It was really warm here yesterday, head was sweating with ratty but Dennis still there but cant really call them Dennis now!! Going have a nice nosh tonight and hope all goes well for everyone.
Thinking of you whilst not here
x
Hi everyone,
got my last epi today, so half way - half hearted little cheer!! Really wand to throw the cold cap and also red burn on my head from it, but gone now. Got in port first go but a trainee nearly pulled the whole thing out at the end and made it sore. Still done now and feeling a little delicate in the tummy. Told to hit mouth regime fast this time as starting worse than usual. My neuts had gone up? Quite a surprise. My friend’s had gone really low so I was sorry that she missed hers and we are out of step again.
Lisa hugs to you for tomorrow and hope you are one of the fortunate ones. I can imagine how concerned you arae from some of the postings at times. It has to be done so you might have to give yourself a little more tlc for a while or stop work for longer. You can only see how you go. I think once it is in you will just be resigned to it, which is where I am right now. What a great person you are to sort the gene out and if you believe in karma that will come back and be good for you, doing something so positive. The positive thing coming out of it is why I am doing the trial. Enjoy the meal out and good luck tomorrow. Let us know how you are. x
Angie I am so pleased you will stay in touch, that really cheered me up and my gosh you have a dose and a half!!! I was told my CMF is in 2 doses because it is too big for someone to cope with - Yikes!! Was told today that my CMF is in 2 doses because it is too big to have in one go -Yikes!! The methotrexate is tiny so must be a mega C and F for me too. Perhaps I should go ang get a FCUK t shirt for the visits!! No results back. Seeing onc next week for a chat, so hope to know then. Still saying forget it. Like they would if it was them!
Hope you get your trip, get fixing that leak and hope you get some sun too
Nicky thinking of you, hope neuts up enough and that dose gets in quickly. I am just looking over the dark hole tonight waiting to fall in !! Hugs to you
Bevy hope you are improving, also anyone else I forgot or reading this
Lily x
Lily glas you managed to post! hope next few days aint too bad - cant remember what next for you! sounds yuk with the port! God Im such a wuzz, gutted as called me today to say nip over early am and can have bloods via pin prick but unlikely now as genetcis need lots! I would do more if could to find out for others as i am gutted that somoen related could have had it done but because really ill wouldnt ask, but then again I dont know if I would have done anything.
Had some mouth issues too this time - ouch!
xxx