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Marvellous Marchies 2012 Moving on

Parsnip
Member

Re: Marvellous Marchies 2012 Moving on

Evening everyone,
Wanting to send love to all that are still suffering, side effects or emotionally. Day 2 after my second dosing and I'm exhausted I feel like I've done nothing and still have no energy. Was immensely chuffed that I made it to story time at my son's nursery today, he was so pleased I had made it that it made the sheer effort and exhaustion worth while. Totally wiped me out though and my mum had to bath him and put him to bed, I did manage a cuddle in my bed for his bedtime story though.
With regards the injections, I think if you can tolerate them then be assured they are doing their job. My WBC was 5.4 when tested on Wednesday just 13 days after that first dose and whilst fighting a throat infection. The aching bones means your bone marrow is mobilising the white cells into your bloodstream. I try to take it as a sign that it's working (when I'm in a good mood anyway!).
Hair has started to fall now, only slightly but definitely more than normal. Am trying to use the same psychology of "it's a sign the chemo is doing its job" but finding that one more difficult to cope with. Don't expect it to last the weekend now after this second dose and I'm not sure I'm ready for it to go. I think it is such an outward sign of the hell we're all going through, more difficult to forget about it for a while.
Hope all those struggling are finding strength and support from loved ones to ease the worries, pain and fear.
Xx

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Re: Marvellous Marchies 2012 Moving on

Hi all

Gosh turn your back for a moment and more pages to read.

Lea I'm also a teacher and nothing has been mentioned about injections. I'll ask oncologist on Monday when I see him.

I'm feeling really thankful now for se as more and more stories are emerging.

Hoping everyone now feeling more upbeat and slowly regaining energy.
I must be ok just started rearranging living room ( bit wierd
for a Friday night but you have to get your excitement where you can nowadays!).

Love to all

Carolyn xxx

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Re: Marvellous Marchies 2012 Moving on

Hi kt23
Sleep what that, i feel so awake but still not energy, the steroids do keep you awake they advise not taking them after 2pm. Mind you don't know how long the effect last after finishing them, i have been up all night most nights then going to bed at 5am and still up 2 hours later.
I going to ask for sleeping tablets next time, if only my awakens where productive.

hugs x

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Re: Marvellous Marchies 2012 Moving on

Good Evening ladies. I have 1/2 a day off line and you all have exploded with experiences side effects etc., hugs to you all.
Anglehearts i understand how scared you must have been and your son deserves a medal.

I didn't post about my scary experience in full as didn't want to scare other people who are behind me on their juicing,
I on FEC +1 injection for blood cells 24 hours after
I suddenly went dizzy, my ears started buzzing like when you join to faint, i was on my way to bed as i tried to stand up i couldn't, tried to focus on the tele and insisting to myself i will get up and turn it off this took me well over 2 mins before i was able to get walking, i staggered to the stairs feeling very dizzy like i was going to collapse, as i tried to get up the 1st step, i lost total control of my bladder, i remember thinking if i sit on this step i will not be able to get up again, I was on my own my OH was on nights, i managed to get up the stairs and to the bathroom, my ears where buzzing i knew i was going to collapse, i managed to get to the bed and lay width ways on it and was breathing very heavy, next thing i remember i came round/woke up, the bedroom light was on full, it was an hour later. i knew i had not just fell asleep, i was freezing, ending up wearing fluffy pj's fluffy walking socks and thick winter dressing gown under the quilt, i was shivering inside, my temperature said 37.2, i then ended up the rest of the night with extreme right sided pains at waist level in my stomach and side. the pains where that bad i'd say 9.5/10, unable to lie on my right side. The next morning i was fine.

Been so scared since i spoke to the Onc today at the trials clinic, she is going to log it on my file incase it happens again, shit!!!! i don't want that again i thought i was dying.

Other than that my SE's have been minimal on day 9 now.

On a lighter note, when i 1st cam on here and i saw the abbreviation SE i thought it meant Sickey Episodes.

((Group HUG to all)) xx

kt23
Member

Re: Marvellous Marchies 2012 Moving on

Hi all,

I need to read this more often! still have 5 pages to read. but a quick question has anyone had any problems with sleeping? Last night was night 3 after my first chemo and i only managed 5hours sleep, i have been awake all day and feel shattered just can't sleep, 😞 starting to make me feel very emotional and down and i am always able to sleep no matter where lol.

Hope everyone is feeling good

xxxxxxx

lea
Member

Re: Marvellous Marchies 2012 Moving on

sorry, wanted to add my oncologist said they only give the injections to women at higher risk such as primary school teacher and i got them because i work with children. they certainly seem to be causing a lot of problems.

wishing everyone a great weekend

lea
Member

Re: Marvellous Marchies 2012 Moving on

Hi all, can't possibly send individual messages, not that clever.. but it does seem some have had horrible side effects. hopefully we can get through round two a bit more smoothly. a comment on the filgrastrim causing my se (I think it did) but I telephoned the drug co and they told me they had never had this se reported before? haven't heard from oncologist so don't know what will happen next week when i'm due my second chemo.but it feels great to be drug free for a couple of weeks.

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Re: Marvellous Marchies 2012 Moving on

Evening ladies

Poppy bless you what a hard time you're having. Life is definitely shit at times. I'm sure I'm not alone in sending you and your family hugs and prayers.

Gillian/socks just think this time next week you'll be through it and hopefully having minimal se.

Where Caren, Joan and I have our chemo they do prescribe steroids, but to be honest I'm not sure why.

Caren you sound so positive about the hair, luckily mine is holding on so hopefully get away with it for a bit longer.

Wolsey welcome and yes we do like a chat about anything and everything so we look forward to your posts. I'm a few days behind you next one with Joan on Thursday, and like you I've felt good in week 3 even to the point of wanting to go back to work for week 3 in each cycle. Like loads of you the sitting around is driving me mad.

Sorry to hear you've been put back a week Deb that. Hat be so annoying for you.
Hope oncologist went well today Lydia and they've put your mind at rest about a few things.

Angel herts I hope things are now looking up for you, when I was going through bad times when my husband was I'll, and after when he died my son was only 17at the time and all through that terrible time he was with me for every hospital appointment and like you after I felt guilty that he had seen too much. it made me realise what a fantastic young manwe had raised. They say it's times of adversity your real strengths shine and it seems like that is so true.

I feel as if I've had too easy a ride this first time and I'd willingly take some of your suffering for you my brave chemo buddies.

Sending love and hugs to all you wonderful Marchies.

Carolyn xxx

Wolsty
Member

Re: Marvellous Marchies 2012 Moving on

HI Ladies

Think I might join you if that's OK as you seem a chatty bunch. Had my first chemo on 27th Feb so nearly a Marchie!

Will just have to catch up with all your news but definitely my thoughts are with you Poppy. Hope your son is OK.

Deb - I am due to have my next chemo session on Monday. I did have the Neulasta injection 24 hours after my first chemo and had slight aches the day after and back pain a few days later but didn't last too long and probably worth it if it keeps your white cells up. I have to inject myself next week which I'm not looking forward to but at least it saves a round trip to the hospital.

Reduced to tears this morning by GP's receptionist who was just callous and unthinking. Anyway managed to speak to my GP over the phone who prescribed various things for me (ibuprofen, piriton, E45 and DIfflam mouthwash) and complained about her which made me feel miles better.

Have felt really good in week 3 which has really cheered me up although starting to dread the thought of starting all over again on Monday.

Still, it has to be done! Hope everyone has a lovely Friday night.

Jane x

debh
Member

Re: Marvellous Marchies 2012 Moving on

Hi Ladies,

Anglehearts, I am so glad you have recovered from you nasty experience.

PoppyD, my heart goes out to you OMG what a crap hand you have been dealt. My very best wishes goes to your brave and thoughtfull son.

Chascat, hope your pre chemo went well and not as frightening as you thought it may be.

Gillian, do things at your own pace as and when you are ready, it dosnt matter if you never read it.

EBhippo, my dear friend, hope you are still doing good and enjoying the cardboard.

I went to see the onc today who told me that I could not have my second juicing on Monday as my white cells are down. Said I would have to wait another week and on my next round would have to have the injections. I am so scared of having them as there is not one positive thing said about it, it sounds awful as if things are not bad enough. Has anyone had a good experience with it.

Best Wishes to anyone I may have missed.

Deb xxx

Care_N
Member

Re: Marvellous Marchies 2012 Moving on

Hi ladies,

Well just had my head shaved (no 1, so not quite shaved). I felt really tearful when I got there, especially when she was so kind and gave me a hug, but felt better once she started. I've now got my wig on, and feel very strange - there's definitely no hiding this now.

When I tried my wig on while I had hair it felt ok, quite secure, but now without hair it does feel like it could come off quite easily - I think I may need some tape if I'm going to be wearing it very often. Or maybe it just a case of getting used to it?

Apparently I have a nice shaped head, and my daughter (bless her) said I still look good without hair (I really don't - or even with hair!)

Right,off to practice scarf tying!

Love and stuff, hope you all have a lovely weekend
Caren x

pargayan
Member

Re: Marvellous Marchies 2012 Moving on

Hi Everyone

PoppyD I have to confess I had a tear in my eye whilst reading about your son, you are so strong to be thinking of others during all of this.

Regarding hair after the cold cap, I am using Naked Care Sensitive shampoo and conditioner from Boots. My hairdresser commente when she cut it today that it is quite soft - I would say limp!. I have also found that I can leave it 4 days without getting that horrible dirty smell that usually comes at the end of day 2 so can only assume it is because it is more natural with no parabens (mimics oestrogen) SLS and petrochemicals.

Angelherts, your son sounds like he does you proud and will be a fine young man, well done to you. Glad you are feeling better. My hosp sent me home with 14 days of tablet form antibiotics which I started on day 6 and finish next tuesday.

Had my pre op today for my portocath op on Tuesday, not looking forward to another general and wish they did it under local but they don't so have to put up with it.

When I had my MX a lady in the bed opposite me had an allergic reaction to the painkiller she had and I think that was diclofenic but it was a few years ago so I might have the wrong painkiller.

Hope everyone has a lovely SE free weekend, hugs to all x

poppyD
Member

Re: Marvellous Marchies 2012 Moving on

Hi

thanks Gillian

i didnt have steroids for my first chemo cause i have type 2 diabetes and since first surgery have had difficulty controllong blood sugars so thought best to avoid steroids but think I may ask if i can have them next time

Love Poppy x

wintersocks
Member

Re: Marvellous Marchies 2012 Moving on

Hi All, Wintersocks (Gillian)

Beryl, it's Gillian not Julia, easy mistake as there are a lot of us on here. I understand what you are saying about reading the letter, and the thing is that is my usual approach as I have had a lot of traumas to deal with in the past. I think I have run out of steam at yet another one - so don't worry no offence we all do things differently - whatever gets us through I guess.

Clare (waiting too) I think you and I have a similar approach, I think sometimes we have to be ready, to steady our selves to cope with the next bit. I think the day will come when I am able to do that...whatever i will know soon enough as all will become apparent.

Poppyd - you have certainly got so much going on, my thoughts are with you and I hope your son, you and your family all get through the tough times ahead . Am sending you a hug.

I am starting chemo next week, (23rd) I have not been asked to do a 'chemo check' - heart etc. do they do that before you start on the day?

i have read a lot about giving yourself an injection, what is this for? does everyone have to do this?

and lastly. does everyone get steroids?

Thank-you all! - Dr's Chemo

Gillian or Wintersocks or Socks X

Bettie
Member

Re: Marvellous Marchies 2012 Moving on

HI Carolyn I really feel for you. I too am waiting to see my oncologist to start chemo when I dont feel ill and I also feel like I want to scream.

I really hope you have started your treatment now and good luck.

Big hug xx

poppyD
Member

Re: Marvellous Marchies 2012 Moving on

Hi

Thanks for your best wishes everyone. Think I just got the blues today
I know it is tough for everyone I just cant see the light at the end of the tunnel

My beautiful son got married last June and in August he rang me up and said I dont want to worry you mum but i have a brain tumor. he then had 2 episodes of surgery one of which was 12 hours and was what they call a sitting craniotomy in which he had a high risk of dying. when he went theatre i was aware that I might be saying goodbye to him

I cancelled my mammogram twice as i went to stay with him and his new wife. When I was recalled from screening I reassured them it was all just more screening and even when I got the cancer diagnosis i played it down as my husband and three children had already been through enough.

I am sure many of you can identify with sorrow you feel at having to put your children through all this

He now awaits his next less risky surgery which will only take half
a day.

This is a C**p journey and I am aware that some of you will have a longer more difficult time than me, but I think it all gets on top of you sometimes

on a lighter note anyone else have mad hair after cold cap how are you managing hair if you are fortunate to have some.

I am not sure wether to just let it go as it has turned into an unnatractive fizz. wonder wether I should be brave and just let it go

Love and hugs to all you brave march chemo ladies

Poppy D

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Re: Marvellous Marchies 2012 Moving on

Hello Marie

Yes, I know where that is and remember going there but a little while go. I'm at attending QE, King's Lyn and then to Addenbrookes for rads. I love Norfolk and the coast but I'm not a native. Originate from Northampton. My husband was in the Airforce and we got posted here in 1988, loved it so much that we've settled here. Booked a LGFG (I think that's what you call in) thought I would originally have to go to NNUH but they have one here. Difficult to get one so should have finished my chemo and just started rads, all being well. Lady said I might get a cancellation for 28th of this month, you never know, having said that it will be somebody's loss and my gain, which bothers me a little.

Feel a little better after having had a nap but my feet are continually cold. Having a not too hot cup of tea and a warm/hot water bottle to see if that helps.

Love Beryl XX

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Re: Marvellous Marchies 2012 Moving on

Hi berylS, I live near Attleborough not far from Norwich so am attending the NNUH for all appointments. Just returned from having haircut short and once over the shock am quite impressed with the new style, shame it won't last long before it falls out!!!!

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Re: Marvellous Marchies 2012 Moving on

Hi everyone,

Nurse has been (12 noon) for second injection and managed to do it myself with her guidance. Should be OK for tomorrow and feel sure enough in myself to do it. Nice nurse said any problems they can come in and continue, which is reassuring. Six to go now and will be glad when they are done. Talked to her about the s/e's and I said has I hadn't had any allergic reactions to first then I should be OK. She said that it can still can come out when you have the second, after that will be OK and not to read too much into the s/e leaflet. I told her that I needed to know exactly what to look out for and when etc., otherwise how would I know what's causing the problem? She was very nice and wasn't about to rush out of the door and we had a nice little chat for about 10 mins. Going to take some more paracetamol to keep topped up, great advice and I already take an antihistamine tablet daily because of my very sensitive nose. I've got Manuka honey, which my friend gave me and it suggests taking one spoonfull 3 times a day. I'm not a lover of honey and I find it far too sweekt. Although my mother aways swore by it. One spoon a day she used to say but not Manuka, I doubt she had even heard of it.

Angelherts - What troopers you and your son are! Such a little star he is and it sounds like he handled it so well. Please tell him we all think he is JUST GRAND. Glad they're put injections on hold, couldn't see them doing anything else really. I'd prefer not to be having these and it would have been interesting to know what the counts would be like without them, but we can assume that it's for the best. They have probably been down that road before at some cost cutting stage, or am I being unjust? Also amazed that after all the trauma you went through yesterday that you have managed to send little messages to so many of our lovely ladies. You're a marvel!

PoppyD - I hope, like all the others, that you are feeling better today and what another lovely, caring son. There's so much going on in your lives at the moment and receiving flowers is such a boost.

Anywone having treatment and pre-assessments today, that they go smoothly. I'm off for a nap as I'm feeling quite tired.

Love to all.

Beryl XX

Care_N
Member

Re: Marvellous Marchies 2012 Moving on

Hi All,

I really enjoyed the Headstrong session, and would recommend you book one if you haven’t already. Carolyn I can’t wear the caps or peaked hats either, I looked ridiculous! Joan, the two ladies running the session were amazed that out of the huge choice they had we chose identical scarves and bands! They didn’t say until I had picked them. I won’t wear mine on Monday – but I will be wearing a scarf or a wig – my hair started falling out yesterday (day 15), and is now coming out by the handful, so have got an appointment to get it cut/shaved later this afternoon. It’s got to be done, but feel really nervous about it now, this seems far too real!

Angelherts I’m so sorry that you’ve had such a hard time lately, hope things start to improve for you soon. You must be so proud of your son, he sounds so sensible! Where in Hertfordshire are you? Is it too far for a meeting at Lister on Monday? There are 4 of us so far I think.

Parsnip hope you’re ok after second juicing? I must say I’m not looking forward to the second one (next Wednesday) but it must be really tough having them every 2 weeks.

Beryl I hope you haven’t had any se’s after your second injection. I was ok with the injections until the last one, and had back ache for 24 hours, but nothing too bad, I think I got off very lightly.

Liz, pleased to hear you’re feeling so well today, I’m appreciating feeling well this week too, and trying to get the house blitzed – but keep getting distracted….

Poppy I hope you start to feel well soon. I felt nauseous for about 4 days, so hopefully you’ll start to feel better soon. It must be really hard to have your sons surgery to worry about too.

Collette thanks for your input, it’s so good to get comments from those who have already been through this. I remember that I also had a neck ache, but just put it down to lazing around too much! Now I think it must have been the injections.

CM, you’re our rock here, I hope everything is ok with you.

Have a good weekend everyone, love and hugs to all
Caren x

poppyD
Member

Re: Marvellous Marchies 2012 Moving on

good luck Lydia

love poppy x

chascat
Member

Re: Marvellous Marchies 2012 Moving on

Hi ladies

Just a quick post as i'm off for my pre chemo appointment, really nervous and my stomach is churning.

Love to all

Lydia x

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Re: Marvellous Marchies 2012 Moving on

Hi Ladies,

Hope you don't mind me popping in from Sept Chemo.

Lea, just want to let you know that the filgrastim will give you bone pain, aches etc. I had awful neck pain with it for a few days each cycle.

Keep a diary of side effects, just to put your mind at ease.

If anyone wants to pm me, I am willing to help. (Of course there is always the BCC help line.)

Hugs
Collette x

waiting_too
Member

Re: Marvellous Marchies 2012 Moving on

Regards to all the other ladies meandering their way through this chemo tunnel.

Winder socks, the worst period emotionally is the one you are in, its when you are just 'passive' geting bad news from tests. I was beside myself with abject terror, nothing I've ever experienced. I found I had to wait until I was in the right frame of mind to read things. In the meantime, I just dealt with getting through the day. saying, that information is there, but its not for today. I een had ot chunkout my day - ok the morning as about x,y,z, the afternoon is about... and so on. Big, long deep breath where you blow out all the anxiety also helped me.

Then eventually, the day came where I felt positive to read my tests and to read the BCC help guides (that are super). Believe me when you have information PLUS a roadmap in front of you and you know you are going to start doing something to arrest the cancer (being active) then it does get better.

I agree with others, Grade 2 is localized to the breast - not so bad. Mine is grade 3 and lymph node positive so the wee blighter was on the move... nevertheless the chemo (cilit bang - and the cancer's dead) will do the trick.

Clare

waiting_too
Member

Re: Marvellous Marchies 2012 Moving on

Angelherts,

I just read your posts - you poor thing what a nightmare. You're going to need a lot of reassurance and help form your BC nurse and Onc before you take more of those - ASK for WHAT you NEED.

I asked for a sleeping tablet, can you possibly have one to use if you need it? Maybe when friend is staying over, so that you at least have some relief from SE's and 'your thoughts' for a few hours?

No need to reply, if you're not up to it, just read and know that we're thinking of you.

Channeling all my hugs to you.

Clare

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Re: Marvellous Marchies 2012 Moving on

Morning all ! I survived the night after my traumatic experience and can't tell you how proud I feel of my son. I saw a calmness and strength that I never knew existed, but weirdly it's left me feeling rather sad that he's so mature and almost too worldy wise too soon. I hope we can add some laughter back into his world very soon.

It doesn't help that he's a fantastically talented singer and actor and was actually in a group that was being signed by Simon Cowell record label - but had to pull out when I became ill. The group has gone on as a trio and have now done a showcase in front of Sony Records and are under "artist development" now ;-(

He's not at all star struck and didn't feel he could deal with the singing group drama's and rehearsals (that I might not be able to get him to) on top of GCSE's and helping me. Now he's talking about if he can get a summer job in Tesco's to earn money instead !

Just pray his time will come one day as seems very unfair at the moment. When the Ambulance arrived he was sitting on the bottom stair frantically trying to write out his Spanish essay for his GCSE today and didn't get to bed till midnight - so feel he's got so much on his plate right now ;-(

Moving on I am pleased to say that I nolonger look like Angelina Jolie but I swear people would of paid money to have my lips ! I've called Mount Vernon and they've managed to get in touch with someone in my Onc's team and they've said to stop the injections - HURRAY !

I've been told to take Anti-Histimine tablets today to get it out of my system and they will see what my bloods are like before next one. The chemo SE's only lasted those first 48hrs or so, with a delicate tummy after, but not taking any nausea tablets now or anything (1st chemo was Monday) - and stomach is normal today. Just bit shaky but suspect it's shock from last night. Feel I can look ahead to a better week now 😉

LEA - I would be 99% sure your SEs are related to the injection as well ! I was prepared for the pains because of posts on here so had actually taken Diclofenic and Paracetomol 3 times a day since monday to build up some pain relief - so perhaps that would help - but I wasn't prepared for any allergic reactions !

Our hospital seem to prescribe these injections as standard policy without even waiting to see if your bloods do drop - I'd prefer they waited until after the 1st session as the SE's seem worse than the "possible" risk of Neutropenia but I guess they are the experts.

I'd recommend anyone else about to start them to take Anti-Histamine on the day and pain relief from a couple of days before to try and reduce any SE's.

Thank you soooooo much for all the supportive comments re Money and Injections. I had a nice benefit advisor at Mount Vernon but called yesterday and she's gone on several weeks leave ! Waiting to speak to someone next Tuesday.

EBHippo- glad you are doing soo well, with long sleeps and the energy to do marathons you really are the Chemo Poster Girl ! Perhaps we can do the Race for Life next year 😉

Joan- I really hope your injections improve and glad the pain relief is helping now. Your posts helped prepare me but nobody warned us about Allergic reactions. Hope you have success with the Bra hunt today 😉

BERYLIS - Keep the positive words coming, it all helps. Sorry to hear you are lower today and the pains are kicking in. I hope they ease quickly. I also have the "spaced out tiredness" so again could be the injections ?

CARMY - don't worry about the injections - each hospital has different rules. Hope you have a good weekend and thank you for your support.

Kojak & Marie67 - so glad you are both doing well with little SE's.

Wintersocks (Gillian) - I have to agree that reading the report actually helps and "stage 2" is a positive. I found my 15yr old preferred actual facts and figures as he's very black and white - so Stage 2 - not spread to other areas - can be cured etc - is all he wanted to know. Then he focusing on being positive that this will end soon and we can move on again.

PoppyD - you poor thing ! How terrible for your son to have a brain tumour and I can't imagine how you cope with that when it's your own child and you are ill as well. Life really can be cruel. How wonderful to get sent flowers from him - he sounds a wonderful person. Hope you both have smooth journeys through your treatments.

Clare - I have the honey but not overly keen on anything sweet. It can only help though, as supposed to help prevent infections etc and the Aloe Vera juice is supposed to be amazing at keeping you well. So yes go for it !

Love and hugs to all.

Off to collect "CLEAN" dogs now from being groomed as only way to stay on top of the germs now. Hoping to sleep like a log tonight 😉

waiting_too
Member

Re: Marvellous Marchies 2012 Moving on

Hi Ladies,

My sis has been very kind to bring me manuka honey from the UK and Aloe vera liquid.

NOW WHAT?

How should I take these healing things, any tips?
thanks,
Clare

poppyD
Member

Re: Marvellous Marchies 2012 Moving on

Hi everyone

hope you all having good day. I am on day 3 and despite loads of anti emetics feel so nauseaus. when does this begin to subside have tried peppermint tea and ginger biscuits

Just had loveley interflora delivery from my eldest son It made me howl Iso wish I could go and see him he is still awaiting a date for his next surgery for his brain tumor and feel so sad when I think of the terrible time he has been through

love to everyone

poppyxx

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Re: Marvellous Marchies 2012 Moving on

Marie 67,

I live in the Norfolk area on the coast at Hunstanton are you anywhere near? Although I suspect that you are probably nearer to Norwich. Went to Wisbech to get my wig, are you going there?

Good luck with the s/e's and as far as the injections go, if they haven't said anything about them then you don't worry. No doubt if they feel you need them later on they will send them your way. I'm having 4 sessions of Tax and Cyclophosphmide, which are given each session. Didn't know anything about the injections until they gave them to me when discussing my drugs before leaving the chemo suite. One session down and three to go and like all will be glad when the last ones over!

Love to all

Beryl XX

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Re: Marvellous Marchies 2012 Moving on

Oh EBHippo you made me smile and just what the Doctor ordered.

Thank you and here's to many marathon's even if they are only in our headsat the moment - one day for BC Research - Race For Life! My daughter's have run them before.

Best wishes

Beryl XX

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Re: Marvellous Marchies 2012 Moving on

Morning ladies, compared to some of you, especially Angelhearts I seem to be doing ok with the SE's after 1st session, just not been to loo for 2 days so going to try seena as meds they gave me at hospital do nothing except give me wind!!!!I am having 3 FEC and 3 T seesions of chemo, but nobody has mentioned anything about me needing injections, is this just done on a regional thing or should it be national, I live in the Norfolk area.
I am off to have haircut short today in preparation for it to fall out ( can't remember the last time I had really short hair)and have wig apt next week.
Hope all you ladies do ok today
Love J

EBHippo
Member

Re: Marvellous Marchies 2012 Moving on

Morning ladies

Woke up this morning at 7:30 and felt like I could take on the world... blitzed the house already and although I feel a little tired I am not as shattered as I have been. This is just the start of week 2 so bring it on [hope I am not speaking too soon]...

Have finally managed to get rid of the awful taste in my mouth - whoever invented polos needs a knighthood.

Love to you all out there, I feel like I could go and run a marathon but seeing as I have never done one before I may not bother

xxxxx

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Re: Marvellous Marchies 2012 Moving on

Hello it's me again,

Now got myself washed and dressed and pottered about a bit and head clearing slightly. Reading my post again has made me feel that I may have gone too far with my feedback to Julia (Wintersocks), if so then I'm very sorry!! I'm naturally a very sentimental and soft person who can blub at just about anything sad or sentimental, but this desease changes everyones's personallity and sometimes pushes us to places we don't want to go. I'm trying like everyone to put on a brave face for all connected to us closely and anyone else come to that. Inside is a different story and the only way I can deal with it is to try, as much as I can, to stay positive - sorry that word again. I'm bracing myself for the next injection, day and what is to come just like everyone and we have to hang in there! Tears and a little blub. XX

Patchit
Member

Re: Marvellous Marchies 2012 Moving on

Angelhearts, how awful for you! There's me telling you not to worry too much! I just thought my posts re the injections may have been a worry to people! How are you this morning and what are they doing about the rest of your injections? Your lovely son and your lovely friend! Bless them both, and you, for being so brave and strong. I feel so sorry for you, and for Lea as that sounds like the same pain I had in my back and legs. On a positive note, I then went on to have my last injection the following day, along with anti histamine, diclofenac and paracetamol and didn't have any pain at all from that injection. I have my 2nd FEC next Thursday and am seeing my Onc on Monday. Not sure what will happen yet, but I do find it slightly worrying if I need to have the injections again! Cant say I am too happy about having a week's worth of paracetamol, diclofenic and anti histamine on top of everything else! Also, why arent we told of th epotential SE's to these injections? Everything else is gone over in great detail!!

Jane, thanks for popping in and good luck on Monday. Hope all goes well with the injection for you this time.

Beryl, hope you have a good day today.

I am going out to Cambridge today to meet a friend. Not sure how long I will last as I didnt have a great night, but I REALLY NEED to get a mastectomy bra sorted out. I have had my prosthesis for over 2 weeks now and the bra situation has been a nightmare!! Hopefully I will get one in John Lewis today, but then again, I thought that yesterday in Welwyn and came home with the wrong one!

Have a good day ladies, hope everyone with SE's gets some rest and relief from them.

Joan xx

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Re: Marvellous Marchies 2012 Moving on

Morning ladies

Oh Angelherts you poor thing you really are going through it. You must feel very proud of your son though, what a star, and I'm sure the last thing on his mind was telling the ambulance people he wax a minor. Hopefully neither of you will be in that situation again.

Carmy I'm the same as you no injections for me, maybe our drug regime is different, but as Choccie has said before it could still happen if White blood count gets low. Fingers crossed though that we avoid them.

Yellow daffodil it is Joan, look forward to seeing you Monday.

Keep trying to get hold of oncologist Lea it seems as if everyone is passing the buck.

Hoping your feeling ok today Beryl, and true words of wisdom to Wintersocks. I'm a bit of a bury my head in the sand person, but also like to know what's going in so I can strive towards things, like counting down to chemo 2 next week.

Hoping everyone else had a good night with few se, and that Friday brings a good day to everyone.

Love and hugs

Carolyn xxx

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Re: Marvellous Marchies 2012 Moving on

Hopefully a good or better morning or all,

Before I start on me, I just want to say a special hello to the ladies:-

Angelhearts, what a time you are having and me going on about being positive all the time. I have to say if I'd been through what you have then I would zip my mouth up! Hoping that you are feeling a little better today and that you can get some advise ref help with finances. There's no justice for deserving cases with the pigeon holes they stick you in. Why can't they just look at the whole picture and cut across red tape, you have to wonder what it's all about?

Julia (Lovely Name) - Wintersocks, I know that when I get a letter through that might not have good news in it, that I put it to one side and then start thinking more about what might or might not be in it, which makes it worst. In the end you have to get it read and you may well be putting yourself through more un-necessary trauma. Easy for me to say I know and I'm sorry, but it's just the same as sitting and waiting to see the specialist, and you go in and sit down and they tell you - you have no choice then but to listen. It's horrible but you are in control of the letter, do it as soon as you can, if you haven't already. We're here to read/listen and offer any wanted or unwanted advice. I do hope I haven't upset you? It's all blooming horrible.

Now on to me and my injection experience. Had my first one yesterday via DN and it wasn't too long before I started to feel a sensation in my knee joints and lower back. Light and nothing too much to complain about, but got a bit fidgety. Went out to watch OH play indoor bowls, for a break. Managed to stay throughout but when I got home I was really tired. Tax truck on it's way in I think. Managed to stay up until about 8.45pm, after taking anti-sick and sleep tablet went to bed. Must have slept until about 2.00am, then started to figet again with sensations to joins and back, just little aches. Thankfully no allergic reactions like Angelhearts. Banished hubby to spare room because he was breathing too deeply - bless him and he's being so good and understanding. Slept until about 6.00am and then up at 7.00am. Still getting sensations, will take some paracetamol because another jab due at 11.00am today. Wonder how that will build on top of what is already happening? Oh, and top of that oI've got spaced out fatigue, Had to happen I suppose, but at least I haven't got to go anywhere or do anything today.

Take care and best wishes to all.

Beryl XX

Wolsty
Member

Re: Marvellous Marchies 2012 Moving on

Hi all, I am in Feb chemo group as had my first session on 27th Feb.

Lea - just wanted to say that I had severe back pain about 5 days after my Neulasta injection (I have one injection 24 hours after my chemo). I was beside myself with pain for about 24 hours. Ibruprofen didn't seem to help at all - could hardly walk and the pain made me feel very nauseous.

Had a meeting with my Onc yesterday and he said it can be a side effect of this injection and prescribed me some stronger painkillers to take this time - my next chemo is on Monday so at least I am prepared. Hope you are feeling better.

Jane

Parsnip
Member

Re: Marvellous Marchies 2012 Moving on

Morning All,
Oh Angelhearts, what a scary thing to happen on top of everything, you should be so proud of your son for reacting so well. I hope Macmillan can help with some advice for your finances. The Maggie's online centre also has financial advisers if you contact them, you don't even have to live anywhere near an actual centre.
Lea, I hope you get your pain dealt with, makes it even worse if they don't know what it is.
Kikak I went to Trendco in Hove (top on the list you get from the NHS when you buy your voucher), they have a good selection of wigs there but do take someone along as the lady there was very knowledgable but lacking in advice on which one suits best. I managed to come out with the 'finest' wig in the place with the least amount of bulk but still wasn't really happy and she didn't offer to trim it there, which I found out afterwards they will do free if you purchase from them. I ended up getting a lovely lady in from the MyNew Hair list to thin it and trim it for me, has made a lot of difference. I'm only up th road in Haywards Heath, and it did brighten up my mid morning at least, just in time for me to go get my second juicing typically!
Fingers crossed for a trouble free Friday for all
Xx

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Re: Marvellous Marchies 2012 Moving on

angelherts, I'm terribly sorry about what happened, sweetie. What a brave son you've got. I hope this is the first and last time this ever happens and you can forget about it soon. Sending you lots of cuddles and resting vibes.

Are most of you getting injections, girls? I'm not getting any, just the anti-sickness tablets that I'm meant to finish today (day 3).

Hoping for a good Friday for everyone. ❤️

Carmy xxx

wintersocks
Member

Re: Marvellous Marchies 2012 Moving on

Hi Julia,

I hope you are still feeling ok? I think you had your 1st chemo today?

I hope you are still good, and your SE remain minimal.

I still have not looked properly at my letter, but feel I am inching towards things, feel I might look at what 'Stage 2' is next. I think it is the only way I can do it.

Too much information, just gives me anxiety overload, and I have my 14 yr old to think of.

Anyway, I hope by now you are sleeping and still feeling reasnoble, given what you have just had.

Best wISHES Gillian

lea
Member

Re: Marvellous Marchies 2012 Moving on

2 posts in one eve. !!!

I had a horrid se on sat, severe nerve pain in my back - the most severe pain i have ever suffered and i have 3 kids!. after speaking to nurse on this site told to contact dr, spoke to dr at mount vernon who said to go to A & E. held off as pain subsided (had started 4am) only to build up again around 5pm so 7pm went to A&E. after being told could be se effect filgrastim or kidney stones or problem with vertebrae in neck or se of FEC. Concluded they didn't know what it was. I phone drug co (filgrastim) who said they had never had this se effect reported so still no wiser. Have spent the week trying to get hold of oncologist as 2nd round FEC next week.

what now.............

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Re: Marvellous Marchies 2012 Moving on

Quick update. Disaster with injections !

Painless insertion and a 3 min drive home. Walked in and flopped on settee totally relieved and put on TV. Within minutes I was burning up and could feel my face tightening and my lips swelling. Tried to stay calm and told myself that all was fine (with my cat purring away on my knee) but then my nose seemed to be drying up, like I couldn't pull air up through it any more and felt wheezy.

Got up and went into kitchen to look in mirror and lips were like Angelina Jolie and I knew something was very wrong. Grabbed a glass of water to see if I could still swallon (although this is all in a few moments of complete haze) and just remember suddening thinking "oh sh!t - something is wrong" and that's the last I remember.

Woke up to a dog constantly licking my face and my terrified 15yr old son standing over me talking to someone on the phone. Fortunately he'd been upstairs and heard the crash and had come down and done all the right things and dialled 999 etc.

It was a hour before they arrived because whilst on the phone I had come round and they had checked if I could swallow and speak and had presumed it was just a normal faint - and not a reaction to anything. My poor son was frantic because they'd told him not to move me but he went next door and got a neighbour who called Mount Vernon hospital and got through to a ward for advice.

The hospital didn't seem overly surprised at the reaction to the Filigristram and got my neighbour to take my temperature and then said to chase 999 and ensure a paramedic does full Obs.

Ambulance was amazing and said my son just needs to ensure he makes it very clear that he's only a minor next time because his voice has broken and he sounds much older, and that he needs to say that he thinks it an allergic reaction and not just that I've fainted. They stayed ages because my blood pressure was soo low but said that Obs were going back to normal and a trip to A&E might not achieve much as Mount Vernon will need to decide on what happens next.

So basically they made me call a friend (the same one that did the dogs bums !) and she's had to come and stay in the house tonight.

So I am feeling very battered with a pounding headache and shakey and can't believe this rollercoaster - and only round 1.

Patchit
Member

Re: Marvellous Marchies 2012 Moving on

Good evening ladies, we are a very active lot on this thread! Lots to catch up on!

Angelhearts, please don’t worry unduly about the injections. My problem was that I just didn’t know that your could have SE’s from them. Had I known, I would have prepared for them and taken painklillers. As I didn’t know, I thought I had got an infection somewhere which is why I went to A&E. I would know better next time! I just need to discuss the injections with my Onc before my second treat next week. I need to be able to manage it better, including the administration of them as I feel totally incapable of doing them and my OH also had problems giving them to me. I was prescribed diclofenic, paracetamol, anti-histamine and a tummy thing which I cant remember but its to counteract the effects of the diclofenic. I rang the BCC helpline and spoke to someone about coping with the injections and I would recommend you also do that as I found them very helpful. Here is a big hug for you Angelhearts, you deserve it, you are going through a really tough time and I wish you strength and comfort. Xxxx

Historygirl, glad you coped with the injections better than I did, its good thet you have balanced things up a bit!!

Rae, pleased you have got your date through at last. That’s the same day as wintersocks. Where are you having your chemo?

Carolyn and Caren, sorry I missed you today! Hope your headstrong sessions went ok. Mine was fine, another thing ticked off the list!! Looking forward to seeing you on Monday and hopefully Rae too. I have ditched the red carnation in favour of the yellow daffodil, mainly because I have one of the marie curie ones here so its easy to pop on!! Hope that’s ok!!

Wishing everyone very small se’s tonight, sleep well, pleasant dreams
Joan xxx

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Re: Marvellous Marchies 2012 Moving on

Hi All,
Beryl, my real name is also Julia, i just use Jules amongst friends x

Angelherts, I also would recommend that you call the MacMillan hotline, they're great for all kinds of advice (including money issues and benefits) and they never ever make you feel like you're taking up too much of their time.

Wintersocks (Gillian), I really feel for you, going through all the tests and scans is daunting and i never really calmed down until i had the whole picture becasue until then I didn't know exactly what it was i was fighting. Just remember that they call it a rollercoaster for a reason - sometimes you'll be up and sometimes you'll be down - both are fine (and required to get through it i believe!)

Anyway, it's been well over 24hrs since my first infusion and i have to say that (touch wood and fingers crossed), i've still not had any side effects at all - I'm probably going to pay for it shortly - but so far I feel completely normal.
I had a full night's sleep last night, i woke up once to go to the loo but dropped off straight after. I've eaten normally all day, in fact i've been starving and eating everything in sight! I've had no sickness or nausea but Im taking a concoction of different steriods and anti-sickness drugs, they seem to be doing their job pretty well, in fact i'm a bit worried about when they run out because i've got used to feeling ok now.

Hope everyone with side effects is feeling a bit better and that those not suffering too badly continue to be lucky.

Jules x

ChoccieMuffin
Member

Re: Marvellous Marchies 2012 Moving on

You might find you don't need to. Get yourself onto a Look Good Feel Better session and you'll have someone teach you how to use the cosmetics you get in your goody bag. I found that my eyelashes and eyebrows didn't ALL drop out, just got a bit sparse, so I got away with using eyeliner (brown, not black) and eyebrow pencil, again brown and not black, even though my hair, eyebrows and lashes are very dark. The slightly lighter colour was a bit kinder to the pale face and looked much more natural.

chascat
Member

Re: Marvellous Marchies 2012 Moving on

Thank goodness for that 'cos i've already bought some 🙂

ChoccieMuffin
Member

Re: Marvellous Marchies 2012 Moving on

Libby, remember one of the prime rules:

THERE IS NO SUCH THING AS A SILLY QUESTION!

And the answer is, yes you can.

libby12
Member

Re: Marvellous Marchies 2012 Moving on

I have my appointment to see the oncologist on the 19th march, can anyone tell me, and dont laugh can you still wear false eyelashes if your lashes have fallen out!!!!

wintersocks
Member

Re: Marvellous Marchies 2012 Moving on

Hello Rae, and all other ladies, sorry I can't get a grip on who is who at the moment.

Rae, I just wanted to say that I too am starting on the 23rd March a few hours behind you. my 1st chemo. At 11.

I too have had CT scan and an Mri. I do not know anything about them yet.

I am so scared, not so much about chemo, but more about what may be discovered on the scans. I do have a bit of the pathology report, but stuffed it back in the envelope where it still is. But my eye rested on stage 2. - something or other. I am much too scared at the moment to get it out and look. I feel calmer today. but know that won't last.

WS (Gillian)

Historygirl
Member

Re: Marvellous Marchies 2012 Moving on

Angelherts

Can I just echo the suggestion that you try MacMillan, I've heard that they can be really helpful with financial issues.

Take care
D x