Sorry on the ices front I took 4 with me in a small ice bag designed for six pack of coke asda 2.99 and 4 ice packs 1.99 kept them infreezer till i had to leave and 3 hours later they were still frozen
Joanne
I was feeling such a fraud on here as apart from my hair falling out and being tired i haven’t had any side effects what so ever haven;t even took one anti sickness pill or anything since this has started but now reading lily200 3rd round has got me worried how were you on the other two epi/
Joanne
Hi Joanne,
really sorry I worried you. I think I get disturbed by stress on the day of the treatment as my best one was the one when it went well. This missing my port and stabbing the wrong place really bugs me and gets me anxious. I think it has been pretty much the same for dose 3, but everything has started much quicker. I don’t see why you would suddenly get side effects, I have always had them
Whatever you do, don’t worry!!!
Lily x
i usually dont worry as i am not the worrying kind take each day as it comes and do as my body tells me. But my son is going away to ireland the day after my chemo and have no one to call if iam ill so it will worry me a bit but like I said one day at a time. And what you doing up at this time lol
Joanne
Joanne,
I would love to say having a great time but sadly fell asleep on the sofa and now got insomnia! I had the same this time, my son is only 16 but looks after me, my chemo buddy in the early days and he was away on a pre-6th form trip this time. I really missed him but it was ok, the b dog was useless, being the only other person left in the house when I woke up!!!
Why are you up then? I am going up in a couple of mins.
Lily x
Hi Lily
Sorry that this one was a rough one but you know you’ll pick up and I’m sure you’ll get to your prom with a gorgeous hairband on and not have to worry about a wig. I definitely feel very down post-chemo so I’m not surprised that about how you are feeling, especially with your M-I-L. A very difficult time for your hubby when he’s still suffering with his Dad’s death - how dreadful for you both. I also totally understand how difficult it is for you to deal with her condition and decisions when you are having to deal with so much yourself. In a much less worrying situation a friend of mine said after 3 recalls for a smear she now has to go in for a more involved investigation and whereas before all this round of treatment I would have been offering to go with her I really can’t give any more of myself at the moment. Also regarding your MIL my close friend’s Mum was diagnosed with terminal kidney cancer a couple of years ago with no treatment options for her but did manage to lead a very full life, and outlasted the timescales the oncs gave, after the diagnosis. I don’t know if this helps or if the situation is the same but I hope your MIL is also able to continue and be pain and symptom free for some time yet.
I’m sure you will be gaining strength soon and will be feeling much better - just have to hope the weather picks up. We had a lovely day in Cambridge yesterday, except for the coming home which took hours. Not surprising though, M25 on a Friday night - one to be avoided at all costs - but difficult to get home otherwise hmmm!
We are picking up my youngest daughter’s french exchange student today from Gatwick so we’ll see the other part of the M25 today! Nearly completed the circle or horror! I must be mad but for the sake of 1 week out of the 4 that are involved in this exchange I didn’t want to cancel it even when I know my treatment would be during this time. In fact my ‘week off’ has suited me better as I will be feeling OK for our activities next week. Just have to hope no strange french germs have come over with him as my immune system is low now. At least my daughter gets 2 weeks in France for nothing later in the month, lucky her!
To everyone else have a good weekend and hope all those that are or have been down are picking up and keep healthy to all of you.
Nicky xx
Hi Nic,
thank you for your lovely posting and thoughts. It is the timing of all this and everything that we would normally cope with, even if we didn’t like it, seems so much more overwhelming. My MIL has not had any treatment really as they took her in and then would not try anything, said she was not robust enough to get off the ventilator (but she was in time to be operated on) or to cope with chemo (as would need a tough regime) . With hindsight she has has since August with no pain, which would not have been the case with major surgery, as key hole not possible. They have just been trying to treat the dangerously high calcium levels but that is what she has said no to now. They already do not know how she is tolerating them and it leads to hear arhythmia and then a coma so not too much hope. She wants to go in her sleep at home so that is what we are hoping for now. You never know but I don’t think she will have too long unless they come up with something else. Macmillan stepping up to home visits now. Thanks for your support in this.
On a brighter note, I am wondering how you will cope with a French stud in your house for 2 weeks! Hope she does not fall for him! I thought it was usually the same sex for exchanges. It is brilliant that you are still carrying on with it and don’t forget to double your groceries, boys always eat so much.Good luck with the M25 again. It is my wedding anniversary today, and had a bouquet delivered, which is as big as me, not hard. have enjoyed arranging 3 huge vases of flowers so the lounge is very homely and fragrant to lift my mood. I really had to struggle to remember what the date was and didn’t want to forget for the first time. Pheww managed it.
Hope traffic is not too bad
Lily x
Morning All. Hope the weather isn’t depressing you all.
Lily, what a lot on your plate. Please don’t take this the wrong way but I lost my Cat to kidney failure earlier in the year, she had a genetic disease that creates cysts and slowly removes kidney function. Being a cat there wasn’t much we could do but sit and watch, ie no treatment but in the end she had a few months and when the time came she went quickly and painlessly as the vet said she would, ie no pain with that disease. I hope the same is true for your MIL ie little or no pain. It is far too much for you to have to deal with on top of everything else right now. Make sure the people around you know that you’re immune system is low when it is so they understand and remember to be vigilant around you as the stress of all this will mean you need to be extra careful.
But Happy Anniversary, are you doing anything fun this eve or still feeling too rotten.
Nicky: Happy going round the great big London car park as we affectionately call it. Are you coming up to your good week then. I’ve lost track of when people are being dosed. We need calenders on here.
I’ve worked out that the in laws are taking up my good weekend, the 10th anniversarry of the business will be day 2 after fec and OH’s birthday is on day 10 so I will have to go have nadir bloods then. I WANT MY LIFE BACK… sorry, got that out of my system. Ho hum next year eh.
I’m starting to think that the worst side effect of all this is having no control of your emotions. I think I could face all the rest but knowing you’re going to be miserable is the pits isn’t it. But it does pass so will try not to dwell on that. Coming up to the good week now so am goign to try and do some nice productive work, all my work friends are at open tech today so another great geek convention that I’m missing. Again … next year. I think I’ll get that printed on a T-Shirt so when anyone asks me when I plan to do x I can just point at it 
Happy Anniversary Lily. How fantastic to have that many flowers. Did you check the card? Sure it wasn’t from some tank topped lothario 
I’m hoping to be chemo free by ours at the end of Sept. If I have any more delays it will be a close run thing as to whether I can have a nice steak but I won’t hark on about it as I know you’re at the same stage of chemo as me which means so many things are off limits. Boy is my shopping list going to be good when I’m finished! We’ll have to do a list for everyone as they come off of all the things we’ve missed, and maybe discovered - like M & S meringues?
We’ll keep an eye on my daughter’s exchange student, he’s at one end of the landing and she’s the other, hopefully not her type. Her and her friend seemed to have organised this themselves rather than the college and he was keen to be here for a month - definitely couldn’t have coped with that! He goes to the friend’s house next week so he’ll be in heaven - 2 lovely girls to look after him!
Again, sorry about your MIL now I understand a bit more. Let’s hope she gets her wishes as and when the time comes but is comfortable for as long as possible.
Angie, yes the M25 was the largest London car park last night. The other half, today, was fine. Weather isn’t too bad down here. Blowy and sunny/cloudy so a typical English day - what more could a boy from Toulouse want? I know what you mean about what you’re not doing this summer. Just being at Gatwick got my daughter and I wishing to hop on a plane and take a holiday and sod the emissions this time! Although we hadn’t booked any holidays abroad this year `I do feel sorry for my youngest not getting a family break. We’re trying to organise it after chemo has finished but need to wait to see if I have any more delays before we can set any dates.
I am currently on my good 2 weeks so will be making the most of things and life is definitely rosier during them so I’m sure you’ll be there in a day or so, if not already.
Take care everyone, off for a wander round our very pretty village with our guest.
Nicky xx
hi everyone,
sorry for the ones feeling rough, at least we seem to have about 10 good days or more, but im on 4th fec on thurs, and it seems to have come around so quick, dont feel ready for it. but at least it will be 1 more towards the end. got appointment with oncologist, on wednsday, dont know if to take hubby, because he will tell him im not watching my weight. like he told me to. ( the chemo nurses understand they have said, most people need the extra calories while you are going through chemo. ) the reason i have to watch weight is because i have secondaries in bones.
hope tommorow is dry, hoping to go out for weekend of freedom, before symptoms start again. i think its really encouraging how strong everyone is being, at least we try to make the most of our days, i have found it more difficult being around people who are well, they still have the energy to moan and winge about trivial things!
so everyone keep on smiling we will beat this, take care x
Hi everyone,
well feeling reasonably ok but absolutely no energy at all, really got the old fatigue thing. Slept the whole afternoon apart from a quick visit to see MIL, who was remarkably cheerful now it is out in the open. So we will all be jolly for her and make how long she has memorable rather than pessimistic. After all it should be about quality or there is no point and who knows she has surprised us before, so it may not be something to worry about for a bit. Thanks Angie I understand what you are trying to say and I understand that she is better not having too much medical intervention as she is so frail and probably under 7 stone now.
I had the quietest anniversary ever of course, being a slug on the sofa. I have been like this for every family event since starting chemo and will also be ill for my husband’s birthday this month (he catches my next dose in July) and my 2nd daughter’s birthday, having already caught my 3rd daughter’s birthday and fathers day last month. It is taking over my life too!! ha ha Nicky, yes I checked the card. My hubby is a big flower giver, having being trained at an early stage in our relationship that I love flowers even more than chocolate, but both is even better! Sadly I am unable to eat chocolate at all while on chemo, makes me ill very quickly.it is really annoying as I love galaxy but even just before my next dose, I just cannot stomach it. Everyone sneaks around munching choc out the fridge thinking I don’t hear them!
I would really like to go on holiday too, but it seems so much work. Then I think what if all my hair goes in the middle of it, so I would have to take wigs, etc. First I think I can’t face cooking if we were self catering but not sure if I could face a hotel either. I just don’t know whether it is a good idea or not and am too scared to be far away from home. Guess it would be more sensible to sit by the sea for a day and get the sea breeze I seem to be yearning and go when this is all over. Trouble is once finished I am back to busy school hols again. Everyday not sure what to advice as it is nice to have support when you go. Is it a check up or are you about to change treatments, I haven’t got the hang of the different times people go. Lots of luck anyway and well done for getting on so far, sliding by fast now. I have not seen anyone since starting, so good job I have my research nurse each time. I don’t see my surgeon for 9 monthe after surgery, which is next year. I bet that will be a scary one with more mammos,etc and fingers crossed.Not sure how they will manage where this guy has put my port as it will jam in the machine. I am sure he should have had it clear of my chest.
Well this anniversary will be a flash into the future , just sitting side by side not up to a lot, but still happy and here
Love to you all and Lisa hope you are at least average! Any more I will be jealous!!!
Lily x
Lily: Hi - so sorry to read about your MIL - difficult for her and you. Everything comes at once, doesn’t it? Happy anniversary - missed the date but your flowers sounded great.
Just to improve things for me I now have painful ‘Good’ arm along the lines of the vein used for the last cherrryade. Why it has taken to now to play up don’t know. Trying the cortisone cream but so far no difference. Will check with the onc nurses tomorrow before blood test, oh joy!
Love to all - will keep you posted. Hope you are feeling much better now.
Julia
XX
hi everyone,
hope you had a nice weekend. I even enjoyed the rain, seemed so peaceful lying in my bubble waiting for chemo head to pop. We built a big deck up behind the house last year, which is a bit like a fortress as the garden drops away from the house. It is all fenced round with lots of plants and pots and really sunny. I think I like the smell of the wood wet best though after it has rained and it starts to dry out and warm up. Probably sound mad here but I do like that after the rain smell and fresh air. Here’s hoping there is more than air between my ears when I wake up tomorrow! How on earth do some of you work? I would be incapable of teaching anyone anything. You heros.
Julia,Thanks for your kind thoughts. I have a port in my chest so I am in a different situation. However, early on people told me to keep massaging my arm after every dose for days to help the veins. Some use arnica which helps with the bruising. Hope it improves anyway and good luck for a quick and painless blood test. Don’t you just hate all these needles!
Lily x
hi everyone
lily i will be going for check up on wednsday, i do need to ask onc to check my chest because i think it looks swollen, probably nothing but i thought that before so i better get it checked out. i know what you mean about fatigue you just have to go with it, i think it makes it easier then on our good days. im sorry to hear about your mother in law, but she must feel blessed that at least you can understand how she feels. and she does need people to help her enjoy each day, a day not enjoyed is a day wasted, (easier said than done, sometimes)
the chocolate thing, i was like that at the begining but im back on it now, ( wish i could give it up)
and as for holidays, if you feel its just too much, find something pleasant in your area, i go to a local lake that as a coffee shop at side, and its pure heaven just to be in the fresh air. sometimes we just have to do little things that we enjoy, we can always have a good holiday after treatment.
hi nicky hope you picking up a bit now, im not looking forward to thursday, youll be a week behind me now.
carrie anne i too had problem with arm, had to have antibiotics and cream, but it did go down before chemo, so they went ahead, had another cycle after, and no probem this time, my nurse said put a warm compress on it because it would open the veins and help with blood flow, i never tried it because it cleared up.
hope yours soon does, (cause its uncomfortable)
lorraine x
Hi Lorraine,
we must have been typing together, just pipped you to the post, so to speak. Is it your old wound that is swollen? I just wrote old wound and made you sound like a soldier back from war with shrapnel, sorry, but we are sort of old soldiers together in this I guess. I had a lumpectomy on 1st April and it does seem to still be changing shape, inflating and deflating a little at times. I have to say the tiniest thing has me concerned, I hope I have not lost my peace of mind for years to come. Worrying about appointments is enough mental torture without me giving myself extra concerns.Thank you for your king thoughts, I went to see her and she seems much happier since her decision so I am just enjoying that with her and time will tell. Things can go very slowly with older folk sometimes. I had come to the same thought as you about going out for days and I think it is a good idea, not too much effort. Just need the good old British weather to co-operate now on a day my hubby is off work. Hope Thursday goes well too, sorry I cannot remember which one this is for you. Getting through them though, and that will be another ticked off. I jus read a thread where lots of people are getting to the end and I am so thrilled for them, it is a mixture of pulling us along with them and feeling left behind at the same time. We ought to all look back at our early posts and see how far we have all come since then.
Hugs to everyone reading
Lily x
Hi all - yet again my post has been lost as I hit the ‘add comments’ button, so I will try to re-create the witty, caring, funny post I’ve just done LOL
Lorraine - we seem to be in the same boat - FEC No 4 coming up and bone secondaries, I hadn’t realised before. Do you have bone strengtheners at the same time as chemo? I do and that’s what takes so long. I hope you are feeling OK for treatment on Thurs and maybe ask your onc if he’s had chemo so does he know what it does to your appetite and taste buds;-) I feel I have to deal with ‘other issues’ after I’m through the chemo bit - that’s enough to deal with at one time. Hope it all goes well and we’ll be supporting you, I hope to follow you next Thurs.
Julia - I know what you mean about the veins. The nurses used 2 quite close to each other for my 1st 2 treatments which meant further up my arm was very tight as it compounded things. I try stretching my arm out a lot helps and also massaging when I can remember. I hope they can find 3 more good veins to use for my next treatments as I’m not very good in the vein dept! I’m very envious of my hubby - he has loads to chose from!
Lily - hope you had as good an anniversary as you can under the circumstances and are on the way up now. At least if the weather is rubbish on a ‘bad’ weekend I don’t seem to mind so much as I’m not missing out on anything. I know what you mean about the smell of wet and drying wood, also the smell as things dry out from the rain in general - although not us after a very wet visit to Hampton Court yesterday!
I also don’t feel like a long break at the moment and hubby and I have booked a weekend in Brighton later this month - no comments about a dirty weekend from anyone please! I fancy the sea air as well and only want a very low key, easy trip that doesn’t involve too much organising so this seems to suit.
I did have a few more things to say in my lost post but can’t remember them at the moment so sorry if I’ve missed anyone out. Hope everyone who is down is picking back up now and that any treatments go well for this week.
Take care
Nicky x
Hi All: Nicky and Lily - thanks for the advice re veins - my onc nurse said it was a known side effect of the epi as it hardens the veins - but I also thought it could be caused by them not running enough fluid thru after the epi - will check tomorrow. I’m using the cortisone cream and have some arnica, but will definitely try the massage after tomorrow’s dose. If it’s not one bloody thing its another!!
Am REALLY looking forward to tomorrow - not. Think of me at 10am!
Lots of love to all - keep well
J
XX
Heya Julia. Good luck in the AM, promise I will think of you.
Hardening the veins, that explains it, will get massaging, I wonder if hyper-cal might be better then. I shall speak to on call mum later. It seriously starting to p*** m off now as it’s been 2 weeks since last dose. They will be using the other arm next week. I have only just started on the arnica cream (lost it briefly, the cream that is
Am now of to get an Indian, really crave it and it is week 3 and they’re a safe, fresh place…
BTW Nicky did you know Nux is also excellent when you’ve eaten food that’s too rich for you.
back later…
Hi Julia - hope it goes well tomorrow and the after effects are not too bad. Will be thinking of you.
Angie - enjoy the indian - presume you mean a meal I love indian food but am almost off garlic completely during chemo so the morning after isn’t so good for me right now but do love spicy food. Maybe I’ll have one next week and sod the taste like I’ve licked the cat the next day. I did know nux was good for over indulging generally - havve you got some nearby just in case? Also I remember buying it initially for hubby when he was stressed a few years back so if I’m having problems sleeping I crunch a couple of pillules and they do seem to help.
Nicky xx
Heya Ladies.
Just traded info with my Mum. Talked her through setting up an encrypted wireless network in exchange for advice about these vains. Pretty hard sensation to describe isn’t it but anyway Arnica is more for surface bruising so am now going to try taking homeopathic tissue salts (keep forgetting to) and rubbing hyper-cal cream in instead which has a much deeper healing action. Will see how I’m doing in 24hours, should be working by then hopefully.
Haven’t needed the Nux for the curry but did really enjoy it, just went for mild instead of hot, ie stayed away from chilli. I’ve not gone of garlic at all, haven’t gone of much actually, except water LOL, sick of it.
It’s interesting the thing about Nux and sleep, very good for work worries but if worrying about money bryonia is the one, that one sometimes stops OH’s migraines too as they’re induced by stress and sudden weather changes.
Anyway I’ve just been reading up on exactly what F E and C actually do and my god is that impressive…
Hopefully this will cheer you all up a bit, or at least seriously upset and little b****rs lurking in us
Warning the following contains science and may make your head do wooozy
F = Flouroracil: This is a anti-metabolite. There work by interfering with the production of new DNA so the cells are unable to make the material they need to produce new genes.
E = Epiburicin: This is a anthracycline. They act by inserting themselves between DNA strands fitting rather like a key in a lock and so wedging the strands together so that they cannot separate at the time of mitosis (Mitosis is when a cell divides into 2 new cells).
C = Cyclophosphamide: An Alkylating agent. They work by forming bonds between the 2 DNA strands so that when they separate, at the time of mitosis they break up.
So in short I have 1 drug stopping cancer finding what it needs to replicate, another drug stopping the cells divide and a 3rd that breaks them up should the first 2 have failed.
No wonder I feel like ****. But not that bad considering! Amazing stuff.
Hope I didn’t overwhelm people with that it’s just the closest I’ve got to the real science. That’s all from the coping with chemotherapy book by Terry Priestman who’s experience is so much I would wear my fingers out typing it but in short an onc, medical reviewer for cancerBacup ex dean of the faculty of clinical oncology etc etc.
The man knows his stuff and it’s a nice short book which is good for us chemo heads.