Hello Ladies
Apologises for not being on here for a while…I do check in on what your all doing just don’t always drop a message though.
Not that I don’t want to, just don’t always get the time. Work everyday where possible and take care of my little girl…by the time I get a bit of me time I’m knackered.
I hope your all doing ok? I’ve my first part of the T on Friday 2nd August…been rubbing Almond oil into my nails in the hope they don’t drop off. Been having my FEC treatment at East Surrey, now have to travel to Guildford for the T part…not best pleased but hey beggers can’t be choosers.
Have been really well since I had the Immune booster injections…making the most of it…
Teresa x x x
FEC-T 3/6 Day 20 (and Holding…) - I’ve done it again. Just found out my bloods not up to scratch so off for another week. (Bang goes my experiment. If I feel neutropenic I guess I am neutropenic.) Messed up my daughter’s plans as she’s come South to look after us and celebrate her birthday here. On the other hand it means we can go to the funeral tomorrow! Which if I were going to have my treatment Thurs (as seemed likely at my appt this morning) then I would have been on steroids and my husband was a bit leery of that! ( What am I like on them, I wonder? No one has said anything…) One useful tip: regular use of hot packs or hot water bottles will improve the circulation of the blood in the phlebitic veins. So when I’m resting I will have the HWB in place (we still haven’t got a microwave)
Teresa so glad to hear from you. What do I have to do to get immune boosters? No- wait - I’m not sure I want to know!
Rachel - what a bummer! Dare we hope that DS’ moving out will enable you to be friends at a greater distance? I wonder if one day he will look back on all this and feel uncomfortable about it? Anyhow big cyber hug ((O)) and thinking of you-it’s a hard situation this fledging business. And thanks for the news about Karen. This chemo lark is no joke for families. I feel as if things are ok for us but I do notice how my OH hates it when I leave the house. (!) …which I do quite often! I always come back, though.
FEC 4/6 Day 25
Thanks for your tactful and caring post Rachel and best of luck- seems like you need a bit of space from your boy and it does sound like you have great support from your Mum and Dad.
Teresa- good to hear from you and you are doing so well on the work front so no wonder you’re tired. Penny, like you I can’t tell what feels like neutropenic weakness from chemo fatigue- I am also desperate to get a ‘pass’ this week to get my chemo on Friday. Sorry you’ve got to wait again. My Onc did not seem keen on the booster injections for me- wants to give it time instead so hope that works. My Onc is very keen on radiotherapy and seems much less keen on drugs…
Hot Water Bottle+sun lounger=Cat Heaven.
It’s strange how oncs are different isn’t it, I’ve been having boosters since I was low before no 2 and touch wood no delays… Barbara, fingers crossed for you, hope you can go ahead, penny make the most of your week off xx
Good to hear from you Teresa - glad all is going well. Why a separate hospital just because it is a different chemo drug? Sounds ridiculous.
Penny - I always warn my OH when to expect my come down from steroids as I can be ratty and emotional, this cycle it coincided with them being away so I could be miserable on my own.
Rachel and Karen - big hugs to you both. xxxx
Morning all
Dodo, so pleased your family home! Zuzy, glad the worst is over and Aly, I get aches with the booster injections particularly lower back. Hope your mouth thing eases. Tereasa, I can’t get over having to go to a different hospital for different chemo. How Annoying and odd. Re nails, remember a cube of jelly a day is supposed to help. Penny, sorry you are delayed again:-(. Barbara thanks for your kind words. Yesterday was difficult but I know it’s for the best in the long run and I hope my son will see the light eventually.
the funniest thinG happened…my 77 year old mum found a pack of Viagra in my sons bedroom after he left and we were clearing up…talk about embarrassing…!
fec t 4/6 day 21
had bloods yesterday and amazingly my neutrophil count was 5.2 which surprised me and the chemo nurse. The nurse who took the blood was really good. Can’t think of the name of the department which takes blood! Brain gone mushy! Have just taken first lot of steroids in readiness for tomorrow’s visit to the bar. The penultimate dose.
have a good day, it’s raining and cool here but forecast is for hot and humid from tomorrow so making the most of wearing a dressing gown and slippers this morning!!
Love to all xx
Rachel; Phlebotany?
Penny/Rachel - Haematology?
Penny sorry you have been delayed again - can’t think why they don’t give you the injections to prevent this happening again.
Rachel - All the best for tomorrow. x
FEC T 5/6 Day 7 - All keeping on track this time so far. Am beginning to be hopeful for a much smoother ride and a few days away by the sea. Now thinking of the New Forest area - do you think 2 1/2 hours is ok for time distance away from home?
Morning all
Off to Guildford today to have my bloods…tis strange and annoying that I have to go to a different hospital but it’s something to do with having the facilities to cope if there is an allergic reaction?? Not too sure if that’s right…
Barbara, hope all goes well for you and Penny relax as much as poss x I too like Dodo am suprised that they don’t give you booster injections, might be worth asking your BCN
Sorry to hear about Karen, not an easy time for her…Keep positive Karen, big hug x
Thanks for the tips about the jelly Rara, will give it a whirl. Sorry about your son, but you made me laugh about your mum finding the viagra…very funny. Best wishes for tomorrow.
Teresa x
Hi Teresa, yes it must be to do with the possibility of an allergic reaction. Yet at my hospital there is no a and e so not sure what would happen if there was an allergic reaction. You will be monitored closely for the first fifteen minutes but if no reaction within that time, they then leave you alone with the drip. I found it so much calmer then that horrible syringe administration of FEC. Are you starting the steroids tomorrow? I started mine this morning and already feel drunk! I hate the steroids but they are to prevent an allergic reaction as well as to prevent sickness. I had no sickness or nausea at all with T. I feel blessed really as I have found it preferable to Fec although at least with Fec we all knew what to expect! That first T was nerve wracking for a day or two until I realised it was so lovely having no nausea! Being able to eat more this last cycle means I feel stronger and fitter and have been out a lot more. Also drove somewhere all but one day of cycle. Ok, I didn’t drive far but on Fec would not have risked driving for ten days as felt too ill and weak.
goodnluck with your bloods today and good wishes for .fridays visit to the bar.
thanks for nice comment about son situation. I hope the future will be brighter x
hello ladies
FEC-T 4/6 day 2 on first T
just thought I would check in and thank you for you kind comments, enough said on the situation, not sure what will happen but its a little lonely as this week both kids are away (with cadets and the other with her dad) so its just been me and the dog and 2 cats
I will keep on going, yesterday was my first T part and I arrived at the chemo ward 10.15 and was not in the chair until 1.30, it didnt help as I wanted to just walk anyhow, no idea what the delay was but needless to say I shed plenty of tears in the chair too but the nurses despite being busy convinced me to carry on. so far today I feel not too bad, woke a little shaky and queezy but I think i needed drink and food and ive been out with the dog despite the rain, so I am trying to keep on going, Best friend had a little boy Monday night and I am desperate to seem them all but think I should avoid it for all our sakes for a few days at least.
started to eat my jelly and use that Evonail stuff, however it says no nail varnish remover, so how on earth do you get the nail varnish off without it - any ideas?
I did laugh at your comment about the viagra Rachel, reminds me of a friend who moved house and her parents helped her and they found a drawer with some personal bits in there - (this was not me I would like to add) and she didnt know who was more embarassed her or her parents lol
my laptop is playing up at the min so having to post on phone most of the time, the kindle fire, can you access internet on there?
ok going to try and do something constructiive now, no idea what but I will let you know
take care and cyber hugs to all
Karen
x
Hello again I bought acetone free nail polish remover. It stinks more then normal!
Karen, thank you for rescuing me this morning from my tears. Your call came at the right time
, and I know your life is just as hard as mine, so thank you 
love to all
x
Hi Rara
Back from the hospital, and yes…start the steriods tomorrow…didn’t realise that you have to take so many at a time.
I have to say I’m pretty nervous about this part as I wasn’t too bad on the FEC, no sickness…just a little blip where I was having the shivers etc;
Well be thinking of you tomorrow, hope all goes well…
Going to have a read through of how you other ladies are coping with Tax…
Teresa x
I am still about. FEC x 6 and the 4th one due in the morning. Spent the whole day worrying about it to the point of getting an upset tum.
Had bloods done this morning and heard nothing so I guess I am fit for purpose. Good luck to Rachel and anyone else at it in the morning.
Ann
Karen yes you can access the internet but you need to get a teenager to show you how, it’s not straightforward. My ED (who is a teenager no longer being 36!) set it up for me and if goes over to wifi automatically at home. Lovefilm and Iplayer is as far as I’ve got with it; I am an old fashioned keyboard girl. There are sites on line which will show you probably but you need a connection for that!
Jo no I can’t think of why no injections either…saving money? My ED charitably suggests they have discussed it and decided it’s not for me. I’m going to the ONC clinic next week to take the consultant by the horns and ask him, straight out.
Teresa- Yes they did talk me through the additional steroids thing to do with T. They did mention anaphylactic shock. I am afraid that I wasn’t listening very well being in some pain from my veins, so I didn’t connect it all up til later. This is a classic example of a situation you should never enter alone- I was on my own as we were expecting a delivery and OH gallantly stayed behind. Next time I will take him…or someone!
Rachel- it’s phlebotomy. Not Phlebotony. I should know the spelling as I once scored a triple in Scrabble with this word…cool!
Ann- whoa! you used to be behiind me and now you are charging ahead! Good health!
FEC measly old 3/6 Day 21 (for Goodness’ sake!) Had a wonderful day at the funeral and drove the whole way there and back (150 mi) . The crematorium was in a deep deep wood- lovely! Good funeral (if you know what I mean) great keeping company with old friends and then slunk away before the bunfight to avoid infections. One of my old colleagues is in second lot of chemo in 3 years. Her’s is weekly and at the same hospital. I expect I’ll be seeing a lot more of her soon! What it is to be the two best-coiffed women in the room! I get to rest tonight and tomorrow a last minute riverside pub lunch for YD and family as it’s her birthday. Yay! I shall be asleep until then I think. Good night sweet moonbeams sleep well and especially those of you at the T party tomorrow!
Penny, your oncologist has horns??!! Are they accepting animals/devils now?? Maybe that’s why you can’t get the white cell boosters!
Had my first Herceptin yesterday. Riotous day; left the house at 7 to get to the Christie for 8 am slot, then whisk back to our local hospital for the Herceptin infusion. The first one is high dose, dripped in over 90 minutes, then another 4.5 hours while they keep an eye on your temp, pulse and BP. Every 15 minutes at first, then when you get as far as hourly you can walk about. I went outside and did a circuit of the grounds. They even provide lunch!
Then, just into my last hour my pulse shot up (to the extent that I was really aware of it), my BP went down, and I spiked a modest temp. Oops! Back on the 15 min obs, cancel OH’s plan to spring me. And we waited. And waited. Eventually they were closing the unit so they decided that as my BP was back up, and my temp down a bit, I could go home. May have been a rather arbitrary decision point, but one I agreed with. Got home after 6pm!
I’d had a lower back ache for a few hours, but as we got home I realised that this was actually part of the flu-like reaction they’d warned me I might have, and I certainly felt fluey - achey, cold, and very very tired. They’d given me paracetamol before the dose, and a couple of top ups, and I took more before I went to bed.
This morning, I feel fine! OH has left for the airport, and I’m off to be fried again soon. But I feel another mountain has been conquered. The first Herceptin is a big, loading dose, later doses (three weekly for a year) are smaller, and less trouble - only 2 hours obs or less I think. I have 7 more radios, so then it’ll just be Her and Arimidex. Phew!
So, another bit that’s doable!
Morning hugs Moonbeams. How are you all?
Jane x
Jane My ONC is decidedly good-looking- he could have been an actor, but horny? No, I don’t think. Maybe I will grab him by the ears, which is an old Irish custom for asking for protection, or so I’m told. I’ve got a few days to work out my battle plan. BTW ED says she has unexplained bouts of neutropenia and she has no detectable conditions. (apart from 4 kids under eight) Your account of your Herceptin treatment had me on the edge of my chair. HER sounds very time-consuming! It’ll be interesting to compare your SEs with Letrozole which is what I go back on after chemo which is a slow burn and which had me more or less permanently in the tired and achy state I get into in week 2+3 of FEC. It isn’t great for hair growth either. But it is insurance, and powerful insurance and I am resolved to learn to live with it!!
FEC T 5/6 Day 8 - Sore throat is back although not yet as bad as last cycle. Temperature up a bit yesterday which scared me but only to 37.6 so no big worries. In fact that temp quite common atthis point in cycle for me. Back to 37.0 this morning anyway. Still back on alert as this is the point last time when I ended up in a and e and my confidence in getting away this weekend has slipped a bit…
I also use acetone free nail varnish remover although I have given up taking off my nail varnish every night to apply the Evonail and my nails feel like they are coming loose despite all my hard work so I decided to keep them covered at night too and now just redo every 3 days or so.
Penny - def take onc by horns/ears (love to see that) and demand injections - why should your treatment keep having to wait? Glad you made the funeral and that it went well.
Jane - I haven’t been told that the first Herceptin is a bigger dose although I like you spent a good 8 hours in hospital last week when I had it. I have been told the second needs four hours obs from start of treatment, the third 1 1.2 hours and then it will just take 30 minutes each time but nothing about dosage just looking for allergic reactions in early treatments.
Karen - Well done for another one down and pushing on with things despite feeling like running and hiding. I was like that at my last treatment too (for different reasons) but all we can do is take things one day at a time.
Good luck to all those at the bar today - Rachel, Ann and Teresa I think. Sorry if I missed anyone out. xx
Hi, I’m still around. Fec 5/6 day 8. Been catching up on your posts, can’t believe how much you all have to put up with on this journey, I’m very proud to be part of such a strong group of ladies. I feel up to now I’ve had it quite easy, but the last two days I’ve felt completely wiped out, which means can’t work, which means I feel miserable. Stupid isn’t it, but I think it’s because the end of treatment is in sight the floodgates have opened. Sorry pulling myself together now.
jane, this herceptin thing, I met a lady recently who is on that, so you have it for a whole year, is that because you are her something positive? I’m just having tamoxifen as oestrogen positive.
ive recently met up with another lady just starting Fec then going on to Fec t, now I can’t remember why I’m only having Fec. Anyone worked out the differences in the treatments?
going to get up now and put my brave face back on.
love to all, Lexi.