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May Moonbeams

Penny47
Member

Re: May Moonbeams

Ann- Hi I saw your post on the Jewels thread- Do you go to the wig lady in Bromsgrove? I met her in Cheltenham ONC yesterday and she had a cancellation so we did a very quick try on. She was great, but I have such a big hat size (as I like to put it) I need to go to her workshop where there is more choice. Looking forward to that. It's quite a trek but doable by train to give us a break. I like the idea of Heather's website - the human hair swatch thing and might look into that. Is your mare due tomorrow or next week?
Everyone- why do you think the site was so slow this afternoon? Does everyone come back from the school run/work and log straight on? Interesting.
Well that's me finished for the day...tired now, thankfully.
nanniereeree
Member

Re: May Moonbeams

I have a relaxant same thing I think you have to put it under your tongue and let it dissolve .
i had my bloods done today ready for chemo tomorrow .
marie xxxx
Guest user
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Re: May Moonbeams

Has anyone been given a sedative before the drugs go in. I could do with being comatose before they poison me.
Penny47
Member

Re: May Moonbeams

Thanks Barbara and all- it has been okay so far. To start with, a parking space opened up for us 50 yards from the front door! Apart from the delay (1 hour) it was no worse than giving blood-I'm feeling a bit light-headed after- just the same. The steroids will probably stop me sleeping tonight but we have a film lined up a Xmas present from MD who is here with us and keen to see it again. They let my OH stay with me just this once and in future I will have to manage on my own- this will be interesting as I have to have infusions in my "good" hand as I lost one of my fingers on the other hand and they don't want to bother those veins. So when I next go all my things (mp3 player, water bottle, book etc) will have to be easy to reach. Another tip for next time- don't wear slippery trousers! The seats are that fake leather and I was slipping all over the place. I was also really needing to wee after an hour (all that fluid!) but I managed to cope. Now I have to get my head round these tablets. (!)
Marie so sorry to hear about the RT but glad you won't have to travel too far. I wonder if Cambridge is as expensive to park in as Cheltenham is? I've got a friend whose husband may have a drug trial for his prostate cancer at UCH and there is talk of free accommodation there overnight when he goes for treatment (!!!!)
barbara2013
Member

Re: May Moonbeams

Marie- sorry you have to have rads but I think quite a few of us will so we can carry on supporting each other through that too. Thanks for tips on round 2- I have bloods tomorrow- hoping for a 'pass'. Good luck Penny.
Zuzy
Member

Re: May Moonbeams

Same for me Dodo, and glad they are otherwise i'd not have had time for the injections and wouldn've been delayed, found out today that bloods were on the low side of normal when I started so a bit p***ed off that they didn't give them as a matter of course, hey Ho, it' sorted for this cycle now which I guess is the main thing xx
Dodo14
Member

Re: May Moonbeams

Interesting Jane. Unfortunately my bloods are taken always on the Monday before the Wednesday treatment at the hospital when I see the onc. so I can't take on your tip.
Great news Zuzy - you are obviously feeling as wacked out as I am! Early night for me...
nanniereeree
Member

Re: May Moonbeams

Hi moonies, just in case I've caused confusion grandson number two is not due toil oct just they wanted to know....
Right today ave been to see the onc and everything o.k for tomorrow told me I have got to have rads 😞 was hoping not to but can have them at Norwich I don't have to go to addenbrookes as Norwich is closer I've I opted for there. Re food I was told pregnancy diet no live yoghurt but muller light etc as long as its pasteurised its o.k ( having been brought up on milk straight from the cow I think I would be fine but not risking it.
Also told her trades would have to be delayed by about 10 days as holiday on 26 th July for three weeks so she said o.k
I think I was grinding my teeth that is why I had a headache after chemo.
Marie
JaneyW
Member

Re: May Moonbeams

Well, had number two this morning, and so far so good. But I learnt another useful fact. I tell you, by the end of our treatments we'll be experts!
When I got there they said my white cells overall were OK but the neutrophils (the ones that handle new infections) were 1.1, and they had to be 1.5 or above. So they took a blood sample from the cannula before they put any fluids through it. We had to wait, but the levels came back at 2.8, so everything went ahead as planned.
But here's the learning point. When I had the pre-chemo talk, the sister said 'one or two days before each treatment, get your bloods checked, and we'll give you a form each time in preparation'. Husband was present, and he confirms she said one or two days. But today's nurse said 'leave it until the day before your next treatment because the white cells come up so fast towards the end of the period that you'll get a higher value the later you leave it'.
So that's what I'll be doing next time. I thought I'd be making sure the results were back by leaving two days, but she also said that all oncology tests are always run through as urgent, so in fact they get results within the hour.
This may be useful for other Moonbeams. Hugs to you all
Jane x
Zuzy
Member

Re: May Moonbeams

Hi ladies, things back on track, such a relief! Bloods ok so had FEC2 as planned, cannula went in ok so have decided not to get a pic line.... Dodo and Janey hope no 2 has gone ok for you too.
i think Littlescoot is still in hospital with no reception....
i'm getting v frustrated re mxed food messages, asked my onc again and she again said I can eat anything!
sorry this s short, need to sleep xx
Dodo14
Member

Re: May Moonbeams

Thanks Namaste -I met someone today at clinic who had one and spoke to her too. They had trouble getting a vein again so it does seem inevitable. I am coming round to the idea but not quite there yet.
Dose 2 complete. Feel very tired and a bit woozy but otherwise ok so far.
Hope you feel better soon Karen.
Zuzy - how did you get on?
Penny - checked the diet no no's again and sandwiches and cooked sliced meats are ok.
Jo
x
Rara
Member

Re: May Moonbeams

Hi ladies!
Sorry you are having a bad time Karen, but it Will pass. Hope you are drinking lots of fluid.
I am a firm believer in ringin the oncology ward if in doubt so in .barbaras case I would check re throat and glands as you have chemo Friday? They might send you to GP for antibiotics? Hope you get sorted.
I noticed Sooz is missing too, so if you read this, I am hoping you are ok.
How is Littlescoot doing?
Marie, I head chemo headache too. Yuk.
Keep strong ladies, especially those on first or second cycle of chemo this week.
I have tell you this: haven't felt so good since diagnosis!., ....got my positive head well and truly back on. Hope it stays as I prefer it to tha anxious wreck.
Love to all
Rachel xx
Penny47
Member

Re: May Moonbeams

Karen are you grinding your teeth at all? I would be- once I get a headache it just gets worse and usually I am tooth grinding. Try chewing gum for a bit. Maybe suck one of those mouth soothing lozenges?
Melrose15
Member

Re: May Moonbeams

Big hugs. Karen. Keep strong and fighting xx
Penny. Thanks for the list. Everyone loves a list 😉 (I need to start one in prep for chemo)
xx
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Re: May Moonbeams

just thought I had better check in , ooooh what a night, headache just got worse< phoned the ward about midnight and cos temp was v low not high they couldnt admit me, so phoned our local out of hours and it was lousy, spoke to upteen people saying the same thing to them and all they could say was paracetmol, ibroprfen and take another anti sickness, i cried myself to sleep i think, still feeling very queezy today but no sickness but close, was ready for throwing it all in last night
well hair cut in a mo if i can stand up long enough
Karen
:(
x
Penny47
Member

Re: May Moonbeams

PS Namaste
Always wondered what I would do without Grandchildren- I think I would ask a primary school to adopt me and go in as a volunteer. Hear kids reading, help on school trips etc. All the nice things about kids and none of the responsibility.
Penny47
Member

Re: May Moonbeams

Just going back over yesterday. Hope you find this useful
1) Nurse is great and since I managed to get lost not once but twice she had a long talk to OH which was not about cancer but helped give him confidence. Most of what she told us I had heard or read before but he had not so a real positive experience for him.
2) If your ONC Unit is as higgeldy piggeldy as ours do take a ball of string. I have discovered that my sense of direction is the first thing to go and I was a Girl Scout! They have volunteers in our unit to sort out lost patients.
3)Mixing socially- I need to check which childhood illnesses my grandchildren have had. And working in hospital and prisons etc definitely a no no. Need to talk to my boss. Avoid crowds particularly during week 2.
4) Pneumonia jab (pneumonicoccus)- highly recommended, if my GP has any in stock! Sooner rather then later, obviously.
5)Boiling water: It isn't just because we live on a farm with no mains water- legionella can live in taps (EUW!) and there is coliform bactieria in many mains waters so boiling or bottled water is the rule of the day for days 6-14. I've chosen a bottled water with calcium in it- they don't all have it.
6)What I can take on chemo: herbal teas are ok and my arnica/lavender oil is fine too. Vit D and calcium preparation is okay (I'm not struck on the calcium tablets on prescription especially now I'm facing chemo constipation). And the usual paracetamol etc.
7)Getting ill: My core temp is low, 35-36, so 27 is a fever for me (I've been telling them for years!) and when you take your temp with an ear thermometer don't use the ear that was next to the pillow (my nursing was done when we used mercury thermometers and took pulses on people's wrists).When I pack my bag ready just in case I need admission I can include day clothes as well as pyjamas.
8) Safe Foods: pregnancy diet and no live yogurts (SNIFF!) so I have donated all mine to my daughters. I will have to substitute Muller rice and petit filous but if any of you know any other milky pudds please let me know (I'm not sure about creme fraiche as it's cultured)
Well off to do the ironing before chemo this afternoon. Karen I hope your head is better. Sooz where are you? Are your SE's sorted? Marleypop and Aly and Namaste keep on keeping on!
namaste
Member

Re: May Moonbeams

Morning Moonies... aw Karen, hope you're feeling better this morning. I had a banging headache all day yesterday following my first session. In the end I took paracetamol extra and 2 ibuprofen which is my preferred migraine cure and this morning it's much better. Not usually advised but it was that or keel over 🙂
Dodo, can I reassure you? The portacath was amazing. I'm still very bruised despite having it put in 3 weeks ago but there were no problems. They cleaned the site then sprayed it with a local anasthetic, put in the fittings and we were away. No pain, no hunting for veins.. just bloods taken, flushing, pre-meds, chemo and flushing and done. I still don't like being able to see it under my skin but I'm gradually making friends with it!
Congratulations Marie.. I must admit to being a bit envious. Despite having 4 kids there's no sign of any grandchildren yet! I've waited long enough, the eldest is 34... but nada, zilch, nothing. What am I supposed to do when I retire (if that day ever comes) if I can't be a granny?
Anyway, feeling much happier this morning now my first session is over. It seems that because my regime is 1 chemo session per week for 12 weeks the effects aren't so instant, more cummulative. I'll definitely lose my hair by about week 3 so that's expected and although I still have to be careful about infections my blood counts shouldn't drop so dramatically as if I were having the higher dose over a 2 or 3 week cycle. Still taking anti sickness meds and steroids though.
It's been a great help having others who are going through the same thing, so thanks to all 🙂 Hope everyone else is managing but if not, you know where we are. Take care all xx
nanniereeree
Member

Re: May Moonbeams

I had a headache the next day just took paracetamol for it
Marie
Guest user
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Re: May Moonbeams

I feel like a right baby tonight, crying over a headache and feeling sick, temp ok so not phoned anyone, but headache is not going despite paracetemol and loads to drink - I hate to winge
back to bed I think
night girls x
Karen
barbara2013
Member

Re: May Moonbeams

Karen- yes I had a headache following chemo that hung around for a few days-felt like a bad hangover- check your temp but then take paracetamol and see if that helps. Well done on first one. Dodo- I had PICC inserted and also worried about it being knocked and having a tube that runs inside into my chest but it soon feels normal and made the admin of chemo so much easier. I am anxious that I won't get the next cocktail on Friday because I have a sore throat and glands up- no high temp tho but being vigilant. Hair coming away feeling brittle and head sore- trying not to touch it as hate seeing the hairs come away. well done Melrose- best of luck Penny and Marie congrats on grandchild!
Dodo14
Member

Re: May Moonbeams

Karen - I didn't have a headache but it is listed as a SE. Have you taken painkillers? Checked with the hosiptal? Rest well it is probably the stress of it all. x
Melrose15
Member

Re: May Moonbeams

Good evening Moonies.
I am feeling the relief Karen, Marleypop and Namaste! I expect the anticipation is worse than the actual treatment. I hope you have minimal s/e's. Karen hope the headache goes 😞
Good luck to the second timers this week. Fingers crossed you all sail through it.
Marie lovely news 'it's a boy!'
My eldest, 18 today has taken his Dad and Grandad to the pub. Never mind his poor old mum, I'm off to put the kettle on 😉
Xx
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Re: May Moonbeams

Thumping head after chemo - normal??
Penny47
Member

Re: May Moonbeams

Karen and Marleypop - what a relief! stay well!
Jane: Visualizing the exocet missiles is really helping me prepare for tomorrow. Exocets have heatseeking devices and I remember what this b***** looked like on the first USS. Heat seeking definitely needed as it was like a monster with many tapveins- yech! Thanks for the image.
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Re: May Moonbeams

Round 1 done - yeaaahhh - a pandaro charm to be bagged
Marleypop - glad you are ok
good luck to the others having first sessions or 2nd session even - we are so brave arent we
took around 3 hours but that was because when I arrived they didnt have the drugs made up ready so had to sit and wait and wait and wait
so far, no real side effects (yes I know its very early I may well be eating my words very soon), no worse than having a drip while in hospital really, just coldness as they injected and strange mettalic taste and tingly nose but ok
I love the photo of George, our naughtly one is Peppa, Lilly is very quiet and posh lol
take care ladies
Karen x
Dodo14
Member

Re: May Moonbeams

Thanks Lola for all your patient advice and to Marleypop for your comforting thoughts. You are so right - no-one ever prepares you for dealing with this type of situation do they? It just come out of nowhere and hits you right in the face.
Jo
x
Penny47
Member

Re: May Moonbeams

A little light relief. My profile picture shows George the naughty one, the one with the lamb chop under the floorboards. He looks rather smug in this photo.
Lola65
Member

Re: May Moonbeams

Dodo - you will get a pre-portacath chat with the person fitting it. He will answer all your questions, so make sure you have them written down beforehand. Once the post op discomfort has gone (2 days for me) and the stitches are out (a week for the neck and 3 weeks for the other) you will forget all about it. If it were dangerous, they wouldn't allow us to have them. They are no more dangerous than a PICC line, and far more comfortable than a cannula for all those infusions and blood tests.
If you are so worried, you can always decline and see how you go with a cannula, then opt for one at a later date.

Good luck xxx
Dodo14
Member

Re: May Moonbeams

Lola65 - The thing that scares me is having it inside me all the time and the fact that it is connected to a main vein. I am worried that this could get knocked and damaged and that could be dangerous. I also feel uncomfortable about having it there in my body. I haven't had chance to talk through it properly with the onc as they phoned me and caught me unawares so i don't feel properly informed at all.
marleypop
Member

Re: May Moonbeams

Thank you Dodo, please don't feel bad for letting things affect you.
Things are happening in all of our lives that we never expected, and were never ready for, you have every reason to feel tearful and low. We all have our moments x x x I 've had plenty....
I hope tomorrow goes smoothly for you and you feel a sense of relief once it's done.
Bless you, thinking of you...big hug x
Lola65
Member

Re: May Moonbeams

Dodo, trust me, your portacath will be the best thing about your whole chemo/herceptin journey. Just read some of the earlier monthly threads and see how ladies really suffer with vein problems and there will be none of that for you, and no pain! xxx
Dodo14
Member

Re: May Moonbeams

Glad to hear you are coping well MarleyPop.
nanniereeree
Member

Re: May Moonbeams

Good luck for tomorrow Janey but we know what to expect this time don't we
Marie
marleypop
Member

Re: May Moonbeams

Hello Ladies
I'm back from my first session of chemo and so far so good. 4 hours have passed and no sickness so fingers crossed...
Thinking of Karen and Namaste and wishing you well x x x x
JaneyW
Member

Re: May Moonbeams

Dodo14, sending you cyber hugs. We are all of us stronger than we ever thought we'd be - or have to be.
Jane x
Penny47
Member

Re: May Moonbeams

Have sent morning in ONC- prelim stuff. Weight down (how, I wonder?) and was told I have good veins. My head swoll up so much with all this flattery that none of the wigs fit so I have to go back. Decided against cold cap cause I have scalp fungus back again from last summer and I sure it will heal better without hair or indeed without headgear or wig. Happily coasting towards tomorrow...
nanniereeree
Member

Re: May Moonbeams

Dodo14 , you are a strong person you will throw everything you can at this like all of us will...
I also feel better than I did three weeks ago waiting fr my first dose xxxx
Marie
Dodo14
Member

Re: May Moonbeams

Jane you are in a better place than me right now. I also have second dose tomorrow but ever since they told me I needed a port fitting for the herceptin treatment I have felt tearful and low. I don't know why this has affected me so much - I guess it is just the thought that I am going to have to throw even more at my body and I don't know how much it can take.
JaneyW
Member

Re: May Moonbeams

My second dose tomorrow. Feeling much more confident than I did three weeks ago because I know what to expect. A tip I found useful was to just try to imagine what devastation the drugs were going to do to those little b*****s of cancer cells in my body. I imagined them as exocet missiles in liquid form, and willed them on their way! It helped me to see the drugs as being on my side - for my long-term good - rather than as poisons against me.

Hugs
Jane x
nanniereeree
Member

Re: May Moonbeams

Ladies you will be fine don't worry you are in safe hands. I also had the injections but I had them for eight days. Anyone else been having weird dreams my daughter was in jail the night before last and last night we were in the Swiss alps (Murren) eating apple strudel when our dog jumped over the barrier and it is a very long drop 😞
Glad to say she is sitting next to me acting as a hot water bottle this morning....
Marie
barbara2013
Member

Re: May Moonbeams

Karen, Penny and Namaste- I so understand- I felt a sort of blind terror as I approached the first chemo and I can only say that the relief afterwards was terrific. Drink lots of water, take a partner; talk lots to the nurse; make sure you have smething for your mouth- icy, fruity or minty as they put it in. I do hope you will soon be feeling better!
Dodo14
Member

Re: May Moonbeams

Congratulations Marie. Nice to have some good news along the way.
Good luck to you Karen and Namaste for today. It isn't as bad as you think it will be.
Zuzy - I think the injections do really work. Maybe it won't be as bad today. It might be that they are giving higher doses now to really boost you up ready for tomorrow and tht is why the pain? I wonder why you have them 5 days and me for 7?
Namaste - I am worried about having something alien in my body too. I have heard it makes the treatment far simpler so all should be good for you today but the idea of having it there freaks me out a bit.
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Re: May Moonbeams

Penny - I decided best get some ironing done before I really give myself a reason why I can plus I seem to be twiddling my thumbs,
I too feel like about to jump off a pier but hey as long as its a lovely crystal clear blue sea and beach under it to chill on I can take that, the swim will do me good - we can do it holding hands as we take our leap
the dog (Jessie) seems to be very protective and wont leave my side and gentle grows at the cats if they want to come up, but I welcome them all up so at times I have all 3 on my lap or at the side of me
take care xxxx
Karen
x
Penny47
Member

Re: May Moonbeams

Yes Karen good luck. I have decided to leave the ironing until tomorrow am to keep my mind off chemo tomorrow afternoon. It's great to have an audience! My little cat (the "good" one) comes in to watch me sometimes. Wonder what they will make of me when chemo starts- different smell? Anyhow good luck today-I really feel as if I am actually about to jump off the pier!
Guest user
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Re: May Moonbeams

lovley news Marie xxx
well I have been up since around 5 ironing, very nervous about today yet I want to get it started
currently surrounded by 2 cats and a dog - awww (think they really want feeding lol)
probably pop on later this morning as my appointment isnt until this afternnon - any last tips?

take care ladies
Karen
x
Zuzy
Member

Re: May Moonbeams

Hi Dodo, yes is filigrastin, will be having it day 3-7 next time around, not looking forward to it as the aches I had last night were the worst I've felt the whole cycle, off for another one in an hour, just hope they do their job, am hoping the aches mean it is xx
Penny47
Member

Re: May Moonbeams

Marie-Congratulations! You will soon have a five-a-side team!
nanniereeree
Member

Re: May Moonbeams

Evening ladies, had Some good news today my son wanted to know what they were expecting and its a boy... I already have one of each so he is our second boy he also says he is going to keep going till they get a girl....
Marie.
namaste
Member

Re: May Moonbeams

Hi Dodo, I have a portacath which was fitted under a general but only because I had 2 other procedures at the same time. I start chemo tomorrow so I'll let you know how it goes 🙂 The only problem I had was getting used to the fact that there was something alien in my body.. that might just be me though! Hope it goes well for you.
Goodness some of you are having a rough time but it's good to see all the support on here. Its also lovely to see that life continues regardless... sometimes it seems thoughts of cancer are all consuming and yes, everywhere so you're constantly reminded (a bit like when you're pregnant you see loads of pregnant ladies)
Thank you all for sharing your experiences, hints and tips and good luck to those starting chemo this week. Hope it went well for you today Karen and Marleypop (I think you're today)
Take care all xx