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May Moonbeams

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Re: May Moonbeams

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
Rara
Member

Re: May Moonbeams

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
marleypop
Member

Re: May Moonbeams

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
Dodo14
Member

Re: May Moonbeams

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?
Penny47
Member

Re: May Moonbeams

Rachel; Phlebotany?
Rara
Member

Re: May Moonbeams

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
Dodo14
Member

Re: May Moonbeams

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
Zuzy
Member

Re: May Moonbeams

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
Penny47
Member

Re: May Moonbeams

Hot Water Bottle+sun lounger=Cat Heaven.
barbara2013
Member

Re: May Moonbeams

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....
Penny47
Member

Re: May Moonbeams

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.
marleypop
Member

Re: May Moonbeams

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
Dodo14
Member

Re: May Moonbeams

FEC T 5/6 Day 6 - Lovely to have my family back home. Daug couldn't stop hugging me all evening, I missed her so much. So far feeling fairly ok. Some signs of constipation but started taking Senna last night so it doesn't get as bad as last time, and a slightly dry mouth and throat. Still early days compared to the Tax mouth symptoms from last cycle which started around day 5 and lasted about a week at its worst so may still have a similar experience.
Zuzy - sorry you have had a couple of bad days - I don't seem to get much joint pain just the occasional twinges - is that what you have been experiencing or something else? Glad you are on the up! xx After you ended up in hospital in cycle 3 did you worry all through cycle 4 the same thing would happen and tense every time you took your temp or is that just me?
Aly - You are olympic enthusiasts! Great experience for the kids - something that will stay with them always. Maybe they will one day take their kids/grandkids to another British Olympics?
All being well throughout this week still hoping to get a last minute cottage, perhaps in Suffolk, for a few days from Sunday.
Is everyone else ok? Anyone at the bar this week - good luck. xx
Zuzy
Member

Re: May Moonbeams

my taste went about a week after tax 1, I get some texture, crunch etc and hot/cold but hardly any taste and unfortunately it's not come back between cycles so think stuck with it til the end 😞 have even had to abandon the early chemo hula hoops as they are like tasteless cardboard! Xx
Rara
Member

Re: May Moonbeams

Blooming I pad!
i meant to say I didn't really get a sore mouth just one little bit but it really wasn't a problem xx
Rara
Member

Re: May Moonbeams

Aly I didn't see your post before I posted.
i didn't really get tax mouth, not everyone does. I used difflam four times a day and ate oineapple! Yes I did get one sore biMobutu not sore enough to be a problem at all.... so I hope you are as lucky as me.
Xx
Rara
Member

Re: May Moonbeams

Fec t 4/6 day 20
mor ing all
sorry you have been feeling crap .zzuzy
i have pre chemo blood test today and dreading that more then the blooming t at the bar on Thursday!
some news about Karen - she has had a domestic upheaval, sadly her OH thinks the grass is greener elsewhere and despite initially supporting her and going to appointments etc, he has been making arrangements to meet another woman.. karen asked him to leave, which he has done. Obviously Karen is very upset and angry and let down about this hence why she has been so quiet on here. I suggested that she tell the Moonies but she can't bring herself to write these awful words so with her permission, I am doing it on her behalf. I am not sure that she will want to discuss it any further and suspect she will want to stick to talking about chemo on here but I know she will have all your support now more then ever. Sad times.
i also have had a domestic! Two weeks ago, my son returned from holiday and was foul so I gave him two weeks notice. I have given him lots of chances. He leaves today. I am feeling like a failure too but he is 22 so there is hope of him maturing in the future and me allowing him back but I will wait til .christmas after all treatment finishes.
Good luck to all at the bar this week and those who have already been there.
xxx
Aly1971
Member

Re: May Moonbeams

Morning all, another sleepless night on mega steroid dose. At least todays the last day of those - just in time for the body aches to kick in! Haven't needed to take any anti sickness so making the most of a clear if manic head and taste buds whilst I still have them.

Zuzy seems like the aches kick in with the injections am preparing myself for the next few days and have warned the OH to expect the worst over Friday and the weekend. Really hope I'm through it by Tuesday as hoping to do some nice things with the kids then Hope Cove beckons. When does TAX mouth kick in and does it subside each cycle or am I stuck with it for the next 9 weeks??

How are all the other moonies doing - Rachel, Karen, Lexi, Jill, Zooz, Marleypop, Angela, Caz, Deborah,Ann,Sarah - seems a bit quiet out there hoping your making the most of the good days thinking of you all.

Penny - those two weeks last summer were so incredible - we could walk to Olympic Park from our house and were incredibly lucky to get tickets to some events - and for us a lasting legacy with a fantastic new play area just opened up this week in the main park and the swimming centre and the rest of the park next year.

Aly xxxx
Zuzy
Member

Re: May Moonbeams

Well done Aly, I've felt crap for the last 2 days but seem to be much better today, it's def days 3-5 for me on Tax! Just wish I could taste something, have a huge sainsburys delivery coming later which I think is going to be a huge disappointment!
hope everyone else is well xx
Penny47
Member

Re: May Moonbeams

Barbara it's 2 parts cooled boiled water to 1.5 parts vodka and about .5 parts lavender oil. I noticed a recipe on line using boiled lavender flowers- that would just be super as they are just starting to bloom in my garden but I haven't got time to wait around for them- I needed to do this now. The Oil I use is from the High Street Health Store with the green logo and it is quite strong. There are stronger- I needed to experiment a bit with the proportions. I make it up in an old 50ml glass spray bottle. A little goes a long way. It's great on duvets to freshen them up between washes. (You have to make sure they dry before puttiing on the covers). The only problem is...I'm still averse to scents (including Lavender) since the last cycle. I'm hoping I grow out of this as I really love herbs and flowers. I had this when I was pregnant and it went off after about 4 months. In the meantime I am just gritting my teeth and getting on with it. First we fight the moths, then we fight the cancer. Maybe I'll get the sprayer out and zap some weeds on the weekend. Grrr!

Aly you lucked out on getting tickets for the games! Brilliant! And something your kids will tell their grandchildren about.

Jo-anyone- do you think the sensitivity to plasters is itself a SE of chemo?

A and E- just watching local TV and they are saying it is still open only ambulances have stopped taking patients there. What in the world do they think they are saving??? And what about people who haven't got cars or kind neighbours? My brain hurts!
Dodo14
Member

Re: May Moonbeams

Well done Aly - hope the SE are minimal for you and everyone else. xxx
Aly1971
Member

Re: May Moonbeams

FEC-T 4/6 - day 1

Hello Moonies.

Well one tax down 2 to go and at the moment so far so good....resting up but feeling wired from the double dose of steroids. Have anti-sickness to take but at the moment feel fine so going to see what the evening brings and take it from there. Have been given 5 x blood booster injections to take over the next 5 days. Have already arranged with the lovely nurses at my doctors to do the first few days and see if I'm brave enough to do them myself after that. Saves waiting in for the district nurse and means I can time them for when the SE's work best in terms of day/night Just waiting for those dreaded SE's to kick in - takes a couple of days apparently, back into unchartererd territory.

Apologies for not posting for a while have been checking in regularly and keeping up with everyone's progress - well done everyone we are all getting nearer to the car park. 🙂

Ive had a really lovely week, went away with the family last weekend and caught up with friends and family throughout the week. Topped off by going to the anniversary games at Olympic park on Friday and Saturday (we're Olympic / athletics fanatics in our house and have been lucky enough to go to 3 games (Sydney / Athens and London) was very special to be back in the stadium cheering on the GB athletes.

Sure I'll be checking in regularly as the week progresses, Penny hope the blood fairy is good to you and good luck anyone else at te bar this week and those coping with SE's.

Penny - thanks for the info on the East London thread - have posted. Jo - well done for surviving the weekend, hope they sort out your plaster reaction. Barbara - hope the va va voom has appeared.

Aly xxxx
barbara2013
Member

Re: May Moonbeams

Penny- thanks for the tips- we have tried all sorts for the dreaded clothes moth! But not yet either pet flea spray or dousing clothing with a lavender cocktail! Can you give a bit more detail- proportions of vodka/water? It would be wonderful to find something that worked- we've got very reduced numbers but just one moth is of course enough. I put lavender and cedar balls in drawers etc and we have some sticky traps that are supposed to seduce the male moths.
Yes- I take your point about viewing this time more positively and agree that I often feel- very oddly -free from stress as I have no work worries/deadlines/Monday mornings etc. But it still a strange- to me-time of suspension that I guess I haven't yet reconciled to. I have been thinking about returning to work for a year and then maybe doing something else- but not sure what. I'd love to be given a sabbatical when I was well enough but that really doesn't happen these days! Have you found out about insurance for travel abroad anyone?
Hope the quietness on the forum means that all moonbeams are thriving or enjoying a holiday!
Penny47
Member

Re: May Moonbeams

Jo and Barbara: The word of the day is Wet Wet Wet! Over an inch of rain and still counting! No floods in the offing it seems. No watering for me! (just have to remember to unplug the modem when we hear the first growls from On High!) So I am taking my bedroom apart and putting it back, spring-cleaning and moth-proofing as I go, just to show I can still do housework. I shall sleep well tonight as I have Pre-chemo appt tomorrow and I feel sick every time I think of the place. It's so bad that every time I download something and see the little card on my screen which looks like a thermometer with red liquid in it I have a mild panic reaction. Well, that is one thing I am sure I can get over as FEC is behind me. For the present at least.

The moth-proofing is because we have found a lot of clothes moths in the house, flying in through the window. Only thing is to spray cupboards and drawers with pet flea spray, that does it in for 6 months. I did it when I had my dx, so it's well over time to do it again. Also I spray my clothes with lavender spray which I make myself out of vodka, water and lavender essence. It's quite labour intensive. Doesn't seem so bad if you drink a bit of the vodka as you go.

Barbara I do believe that none of this time, not one millisecond, is wasted. We don't begrudge our children their years of idle playing, and for us "doing nothing" is our way of growing and changing. I joke about being a claimant of welfare benefits on the sun lounger but I really feel strongly that I am reaping the benefits of all those years of sweated labour and unpaid overtime. If it wasn't for the sickyness, the stupid dreams, the phlebitis (nature's way of telling me not to lift anything heavier than a half- full watering can), the fear (especially the fear) and the joint aches, I can honestly say I haven't felt better, so relaxed and chilled, for years. Grim, isn't it?

Karen: Where are you? Not chasing after ever-popular Jessie I hope? Our cat James (bro of th late George) has gown a halo and joins me on the sun-lounger regularly.

Sending hugs to all. Don't know what this week will bring but bring it on. I have not had enough. (of what I am not sure...)
barbara2013
Member

Re: May Moonbeams

Morning all!
Jo- I developed reactions to my PICC plasters and had large blisters form - there are many different types they can use so just ask for something else. I was allergic to Tegaderm. My current dressings still leave the skin very dry; guess this can't be helped.
Feel like I'm treading water at the moment as if this is time just wasted rather than time recovering properly from the sepsis episode. Just hope all can go ahead this Friday- so want to get these last chemo's done. Sigh...
Grey here today but still the rain has hardly wet the ground.
Hope you are all well!
Dodo14
Member

Re: May Moonbeams

FEC T 5/6 Day 5 - Have survived weekend on own - yay! OH and daug back this afternoon. Still hoping we may be able to get away for a few days from next weekend but really depends on how this week goes - fingers crossed it will all be good.
Penny how is the rain holding off? Jane - those mosquitos won't know what has hit them if they take some of our blood. I had a bite and it took weeks to heal... Also plaster marks really irritating me from bloods and port dressings - I seem to have developed a reaction to them and my skin is sore and itchy.
Where are all the other moonbeams? Keep shining everyone. xxx
JaneyW
Member

Re: May Moonbeams

Ooh yes! C'mon mosquitos, bite me if you think you're hard enough!!

You still above water Penny?

Jane x
Penny47
Member

Re: May Moonbeams

Jane: The poisons can't be doing them any good at all! Although I heard on another thread that you can get nits even while having chemo.
Thanks for the link- Packed full of useful information! I used to make cornstarch (cornflour) powder by adding essential oils to it and mixing it well in. I don't bother now- just have a canister of it in the bathroom. The tip about the flannel in the bra is a good one and I might be doing that sooner rather than later if those hot days return soon. All those other American products! I need to put my extended family in the USA to work finding them for me!

We've had half an inch of rain since my last post! Ominously, also a lot of rain over the headwaters of the Severn so we are waiting with bated breath for it to stop. (Shades of 2007) Sand bags in conservatory holding up well; one of them has cat hairs on it!

No need for the bags at the moment, but I hardly dare say it.
JaneyW
Member

Re: May Moonbeams

I'm so sorry, it wasn't a sticky thread on this site when I checked, it's on the US site - http://community.breastcancer.org/forum/70/topic/773035

Can I put this down to chemo brain?

You're right about bashes to the head hurting more Penny and Jo. Can I add insect bites to the extras that come with bald heads? Have they no shame, picking on a girl when she's down??

Jane x
Penny47
Member

Re: May Moonbeams

Barbara basically the format will be different and they will iron out some of the search problems. There's a bulletin thread you can find on community page: http://www.breastcancercare.org.uk/community/fresh-start-forum is the link.
We are the meat in the sandwich between two thunder regions- very sultry here and the cats are upset. You can hear it but no rain.
barbara2013
Member

Re: May Moonbeams

Good afternoon Moonies!
Just a teaspoon or two of rain here today- the downs are still brown and the air still humid.
I am still taking it very easy- had hoped for some va-va-voom from somebody else's blood- as promised by nurse at transfusion but this doesn't seem to have happened- I have that weak feeling still that I associate with anaemia- or perhaps it's neutropenia.
What changes to the Forum are promised? I have just lost the first lines of this post already but assume it's my clumsiness at times. I hope it will be easier to search on this website though which can be slow and unhelpful. Do any of you regularly post on other threads or find other ones useful? Penny- have seen your 'food' thread. I couldn't find the radiotherapy tips 'sticky' that Jane mentioned. It would be good to search by username too (perhaps not allowed for id reasons) - we might hear from some of the 'lost moonbeams' who we started with at the beginning.
Very fed-up to have this chemo delay- I had been really looking forward to saying 'only one more' this weekend!
Jo hope head is ok and well done to skatemates and Namaste- it might not feel like it at times but we are all making progress. Penny- hope you can get to the funeral and can meet up with grandchildren.
Penny47
Member

Re: May Moonbeams

FEC-T 3/6 day 17 Feeling really slow and easily tired- a repeat of the neutropenia from last month? Or is this an experiment to show that how you feel is not related to your wbc? Practising painting my nails in preparation for T. Why is it suddenly so difficult? Is it because I'm trying to paint over Nail Envy and that is slowing it all down? Or is it because the telephone, quiet all morning, decides to ring just as I finish painting them? Any ideas?

Trying to drum up interest in my friend's funeral on Wed- the one I probably can't get to. It's not being held in our area and the family haven't put it in the paper. This is a shame as there were 200 people at her retirement do which was a few years ago. Most of our peer group at work has retired without trace- and she was the person who kept up with people! (A lot of us left after long term sick leave- that's quite common in Social Work. So I'm in good company!) so I feel like I'm pushing on a piece of string. The one person I have managed to track down is just recovering from chemo and RT after BC! She has had a much harder journey than I have and largely due (we agreed) to having had chemo in the bad winter weather when she couldn't mobilize at all. So things could be worse than this long hot spell! Which may be ending although I have been watching those thunderstorms on the weather radar- they all speak German or Dutch and are giving England a miss right now. Great for the WOMAD festival (not far from us! But might as well be on the moon as far as I;m concerned) and all those athletes in Olympic Park!

I notice there is now a monthly chemo group for August beginners! And a group forming for East Londoners. Looking forward to the new Forum-apparently the list of new posts won't knock groups like ours off the top so easily.

Jo- Glad to hear you have been spared any head damage- I notice that hairlessness makes it hurt more when you hit your head. I am trying to avoid hitting it when I say "Doh!" which is increasingly frequently.
Karen and other parents....How's it going in week 2 of the Hols? We've got a family stopover/reunion next week, day 4 of 4/6. No way we could avoid it eh but.....Doh! I may spend the day in bed if there is any illness. I just can't stay away from the grandchildren!
Marie- yikes I hope you're not in the thick of all those continental t-storms!

Hoping the rest of you are fighting fit. xP
Dodo14
Member

Re: May Moonbeams

FEC T 5/6 Day 3 - Hi guys - my head is fine just a bit bruised. So far I feel ok but it was around day 4-5 last time that it kicked in, I just hope it will be a bit better this time as no so hot and reduced dosage. On my own until Monday pm as OH and daug gone camping this morning so feeling a bit lonely and vulnerable right now. Glad to see a few of you back on the blog as it went a bit quiet yesterday! I might need some cyber company. Hope everyone else ok. xxx
Rara
Member

Re: May Moonbeams

Hi ladies
Trish aka Skatesmate, the tiredness will ease over next two days. On T I found day 5 to 7 the most exhausting. Keep taking your temperature and keep drinking lots. Try and get some fresh air too. The blood count earlier at day five which is why you are so tired. I can recommend eating sardines (.canned in olive oil) on toast,, red meat preferably steak, spinach, peanuts, cashewsz and all bran to boost your bloods.
Jo aka Dodo, how's the head? Hope side effects being kind to you and to Zuzy
I have been out three evenings in a row!! Also one lunch time as well and today I am doing housework and cooking for my parents return from their holiday. The lodger they have did an ok job of leaving house tidy but her cleaning is not so good! She's gone away for the weekend so I thought I had better check their house before they come back. Looks like I will be here for a couple of hours!
skatesmakes
Member

Re: May Moonbeams

FEC-T 4/6 day 5 Feeling pretty wiped out today & wondering how long it will be before I have the slightest bit more energy?
Rara - I'm holding on to that thought of one day at a time!
Dodo - hope you're feeling ok after your slip in the bath xx
Zuzy
Member

Re: May Moonbeams

FEC-T 5/6 day 2
Dodo, ouch! Hope your head is ok. I'm feeling ok two gear, if it's anything like last time should be ok til tomorrow evening then out of action til tues or weds....
i bizarrely seem to be sleepwedlock despithe the steroids and heat, think I have to thank oh for moving into the spare room, although I'm a bit worried we'll get too used o sleeping apart!
Namaste, glad tumour has shrunk and you have a plan. I was off work for 2 weeks after my WLE so fingers crossed you'll have a speedy recoyour. Good luck with your ESA claim, and you too Rara, they don't make anything easy for us do they?!
Hope everyone else is well
xxxx
Dodo14
Member

Re: May Moonbeams

FEC T 5/6 Day 2 - Well all was going well until I slipped in the bath this morning and banged my head. Don't need any extra health worries right now!
Zuzy - you ok after your treatment yesterday?
Welcome back Namaste - glad everything seems to be on track for you. Keep with it. xxx
Rara
Member

Re: May Moonbeams

Morning,
i hope that everyone who was at the bar this week is coping with side effects.
hello Namaste, I am just about to try to claim ESA as now on half pay and can see that this is going to be a challenge financially. I will let you know how I get on but I guess it's quite hard.
i am pleased to hear you have a treatment plan. It may sound daunting now but look how far you have come and the fact that your current chemo has shrunk the tumour is very good. I always try and remember the Macmillan nurse n telling me to take one day at a time! But it's nice to have the finish line in sight.
have a good day evyone
xx
namaste
Member

Re: May Moonbeams

Pacletaxol 10/12 Day 3/7
Evening Moonies.... not been around for a while but I see things are progressing for you all. Not nice to be in hospital but glad things have turned out well for you. Holidays???? Plans???? Forgotten what those are 🙂
As I'm coming to the end of this part of my treatment I've been having 'meetings'. Looks like the tumor has shrunk enough for them to be talking about WLE rather than MX which is very good news.
So now there's a plan... it's not one I like and I'm not looking forward to it atall but it's gotta be done.
Finish pacletaxol Aug 6
Redo CT, MRI scans, ultrasounds and any other tests
Surgery week of Sept 8
Recovery??? Then FEC 3/4 sessions starting October?
Looks like I won't be 'done' till just before Christmas 😞
Just trying to get my head around it all really. Thought I'd be back at work for November but looks like end of January at the earliest.
Does anyone else claim ESA? Just wondering cos I'm self employed and claim contributions based but my Macmillan nurse didn't seem to have a clue about filling in the supporting information on the form for me. She thought it was a private insurance form! Wonder if anyone else has had any issues with claiming anything?
I do keep up with you all, just I don't always feel like posting. It's good knowing you're all here though and we all know what each other are going through xx
Dodo14
Member

Re: May Moonbeams

FEC T 5/6 Day 1 - I made it and no tears today. Thank you for all your encouragement and support. Here's to a better cycle and only 1 more to go...
Penny47
Member

Re: May Moonbeams

Jane- Well that's a relief. I could see scope for a tangle between Bulldog Clip and Gaby Wiglin. Now I think of it I will need the bulldog when a passenger not when a driver as the tumour's on my left side. But it's still a useful tip.

Barbara- They are only going to close A and E overnight they are saying, but it is to be permanent. We are very nervous about this. Now trying to sort out my insurance cover before booking a holiday - have to wait til I get paid this month.
Dodo14
Member

Re: May Moonbeams

Zuzy sounds great to me - good luck for today and the next 3 weeks...
Thanks guys for your support - I will be smiling at you in the chemo suite today. xxxxx
Zuzy
Member

Re: May Moonbeams

Morning Dodo, hope all goes well for you today, just think, in 3 weeks we'll have finished chemo, how mad is that?! Xx
JaneyW
Member

Re: May Moonbeams

Penny, I pull the across-the-boob part of the seatbelt downwards near the part where it clips in (on my left hip), and clip it to the lap strap. Making sure if it pops off it'll do it downwards not up into my face.

Jo - well done! We're all still there in the extra seats!!

Jane x
JaneyW
Member

Re: May Moonbeams

Penny, I pull the across-the-boob part of the seatbelt downwards near the part where it clips in (on my left hip), and clip it to the lap strap. Making sure if it pops off it'll do it downwards not up into my face.

Jo - well done! We're all still there in the extra seats!!

Jane x
barbara2013
Member

Re: May Moonbeams

Penny- that unit sounds a fantastic idea- the A&E route is awful; I hope that if it happens to me again it is in the daytime because then I think you can be 'processed' to the cancer ward much quicker. As all the media coverage confirms A&E units are under enormous pressure- particularly at my hospital. Have you decided whether to book a holiday? All my family and friends are going off- or coming back- and I am so envious!
Jo- well done- it was so tough for you facing that one- but you did it! We are all of us coping with stuff I had certainly never imagined dealing with. It's quite humbling too when you are on the cancer ward and see what other people are experiencing.
Sleep well all moonbeams.
Dodo14
Member

Re: May Moonbeams

Linda - You were right although that wasn't the only reason I was anxious. They took a while to clean it up and take the dressings off and stitches out and had to reconsent me because they have lost my main file! Also I was a bit emotional and had a good chat to the staff nurse about my concerns before proceeding so they didn;t get me started until 11.40 and then I needed to be there 6 hours from then for observation because it was my first Herceptin treatment. Will take your advice on fluids tomorrow. Thanks again for your words of wisdom. x
Lola65
Member

Re: May Moonbeams

Glad it all went well, Dodo. I knew you were fretting about nothing!!!! How come you were there so long? Good luck tomorrow, you will be fine. The ports disperse the poison into a wide central vein so it goes though your system faster. Just drink loads before, during and after. I drink at least 1 and a half litres during infusions, and because you ahve a port going to the loo is soooooooooo much easier - you have 2 good arms. LOL.
Dodo14
Member

Re: May Moonbeams

FEC T 4/6 Day 22 - Well after an emotional start I got through my first Herceptin treatment today. It was a really long day - I was there from 9.50am to 5.50pm and it was very hot and boring but no problems. My port was used successfully and was pretty easy and more comfortable and they were very pleased with how it has healed and took the stitches out and dressings off with no replacements. It also feels far more comfortable and I am less stiff since they did. Thank you for all your kind words of encouragement - you and the staff on the chemo unit really helped me through it today. I will look for you all there tomorrow with me too for my second Tax treatment. xxxxx
So glad you are both home but sorry to hear that your hospital experiences were not great Barbara and Karen. Big hugs and here is to staying out from here on...
Penny47
Member

Re: May Moonbeams

PS I just saw the paper; they are planning to shut the A and E at Cheltenham anyhow so it's just as well we have a helpline and helpline beds! I don't fancy going to Gloucester (10 miles) and thn transferring to the ward at Cheltenham!