Marvellous Marchies 2012 Moving on

Public Archive
1521

Evening Everyone

Bettie - I didn’t start losing my hair until just after second session. My drugs are Tax and Cyclophosphamide (TC) and I get them both at each session. With both of these drugs it is pretty certain you will lose your hair. I won’t be having cold cap again because there’s no point. Certainly felt a great deal better about everything once it had been taken down to a no.1. My head/scalp felt so tender but after it had gone virtually nothing. It took a few days but now it doesn’t bother me and I’m used to looking at myself virtually hairless. If it comes to it then you enjoy all your lovely scarfs and funky earings. Go for it!

Georgie - I’m like your and just looking at wearing my scarfs at the moment. Frankie, my wig, is sleeping on her stand with a gents hankie over her. She’ll get an outing sometime but certainly not when the weather is warm/hot.

Ceej - What a nice picture, why are you so hard on yourself? Your hairstyle really suits you! I’ve already had two Tax (2 more to go) and can’t compare it to anything else but I has been doable. The gave me meds to deal with s/e’s. Nail side of things, touch wood, is OK so far. Feet get tingly and a bit sore. I always look after my feet so I’m hoping that they will survive treatments and nails as well. My feet did get cold after treatment and they do say not to let them get too hot. It’s a bit of a Catch 22 situation dealing with temp of feet. Have been wearing socks and slippers around the house but if feet start to get hot then I take socks off. End up having to put them back on after a short while because they are cold again. I hate cold feet, especially when I’m trying to sleep.

Raechi - My daughter has been reading some of the messages and is very moved by the support we give each other and I think her seeing this Forum has helped her to understand the emotional effect this desease has on all ladies. She thinks that it is great that we can come on here to express feelings and get a boost from others going through the same thing. I’m sure she is a lot happier knowing that I have you ladies to chat to about anything and will go back on Saturday to Bristol feeling more re-assured about me.

Patchit - Good to hear that you got your third session out of the way. Don’t feel guilty about anything, just be thankful that you are being treated and on the road to recovery. We all have to take that road and will get emotional somewhere along the line. Being in bed with your Pj’s on sounds like a good idea and I do hope you get a good sleep.

Parsnip - Big hug to you and your little one. I do hope everything went OK for you today and you are home. Take care and look forward to hearing from you soon.

Dulcie - How are you today, nothing posted yet unless I’ve missed it.

Peanut (Mary) - Have you woken up from your sleep yet and raring to go?

Got to go and put some more cream on my hand, clean up my face and get my pj’s on. Think my body clock my start to go put-put shortly!

Love to all and hope everyone is OK.

Beryl XX

1522

Hi everyone,
Back from my last AC dose and the halfway point, just four paclitaxel to go after this. Came home with extra bag of goodies to help me get through the inevitable bout of cyclophosphamide induced cystitis that will happen, god I am so glad this is the last of that I have to have. They also put an extra bag of saline through me to help flush it out more quickly. So hoping it all helps.
Hope everyone else is doing ok, not heard back from anyone else having treats today so hope you ladies are ok.
Early night for me tonight
Hugs to all
Xxx

1523

Dulcie - We crossed posted. Good to hear from you and like wise what are you going to do with gloves and BP? The mind boggles. No I’m not posh - bless you for the thought!!

Bye

Beryl XX

1524

Hi Ladies - you’re all too kind xx My local hairdresser only charged me £11 and she spent ages on it!
Dulcie - even I am intrigued as to what you’re going to do with all that stuff :slight_smile:
Bettie - depends if your using the cooling cap I suppose - mine started to come out in strands the week before my second Fec which was yesterday, and unfortunately I managed to get a very large knot in the back which couldnt be teased out so we cut it out! so that’s why it’s gone very short at the back and kept the front. Hairdresser says it’s still ok tho - so I am going to continue with the cold cap for the next session :slight_smile:

Got quite alot done today with not being at work! getting tired now - and not eaten today yet, so will see if my salad is still in date :slight_smile:
Have lovely evening ladies x

1525

Beryl - Thanks for the lovely comments, you’ve worried me now cos I thought it was only the E part of FEC that made you lose your hair, and the Tax made you lose eyelashes eyebrows and fingernails? not that that’s NOT bad enough, but I thought head hair started growing back on Tax?
Oh well - my other worry is that last year I had carpel tunnel surgery on both hands which I had to pay for privately, and then I was told that Tax cam bring this on!! not looking forward to that again, and just hope it doesn’t negate my operation :frowning:

okie trying to keep my grandson amused before his bath so signing off xx

1526

Beryl - you always say such lovely things… your daughter is very lucky to have you as her mum.
x

1527

Hi all
Resorting to using word as there are so many pages to read.

Dulcie – Sorry to hear your news re the nodules, hope like mad that it is not mets. Bad luck on your start date – I think most of us are banning birthdays this year by the sounds of it. Re my picture, yes she is a great character, we are not sure what mix of breeds she is as she was a rescue pup, we have had her about a year. I think she would like being pushed around in a pushchair! Re your chemo bag I would also add a blanket if you are using the coldcap and if you are there over lunch and using the coldcap sarnies or something else to eat as I found I was hungry whilst sitting there watching others eat their sarnies and crisps. I think the baking powder is for all the cake baking that you are going to do – I have baked more during the last six weeks than I have the last six years!

Beryl – love your pic and scarf, your daughters words were lovely. Glad the funeral went well, hope the rain that we got in Suffolk stayed away from Norfolk.

To all who have, or will have had, 2nd or 3rd sessions this week hope your SEs are minimal and those of you who have posted new pics with short hair, you look great.

Ali68 – I too am having the cold cap and hate it. I still have about 50% of my hair, very thin on top but still enough to look ok.

ChoccieMuffin – nice to read your posts again and good luck with the interview

Clare – sorry to hear your weekend away was spoilt, my guidance notes from the chemo unit advise you to contact your doctor if you come into contact with chicken pox or shingles, so keep an eye on your temperature.

Jay love your pic – that is another milestone that you have achieved. Sorry to hear you have been having a rough time of it.

Me – this 2nd lot of FEC has certainly taken it out of me more than the first. Despite being in the 3d week I am still feeling very weary. I have lost no hair other than approx 50% of my head hair, part of me is worrying why other hair has not departed, still I should be grateful. Just hope this does not mean the chemo is not working as it should.
In the last 3 days we have also spent over 8 hours on four visits up the hosp with hubby. They think he has had a TIA and have told him he cannot drive for a month and we are waiting an urgent referral to the stroke /TIA clinic. Never rains but it pours - 2012 is a bad year and I wish I could go to sleep and wake up in 2013, all treatment finished and a nice holiday to look forward too.
I am thinking of not using the coldcap on Monday, mainly due to the length of time it takes as I will now need to drive myself home this time round whilst I still feel reasonably ok.

Take care and love to all, sweet dreams xx

1528

Ceej - I was just reading the Tax info they gave me and poss s/e and hairloss is one of them but it doesn’t state where etc. Fingers crossed and touch wood (here I go again) I’ve still got eyebrows and eyelashes and some of the LG. My eyebrows are sparse anyway from over plucking in my youth, daren’t tell you how many years ago that was! Of course I’m having the other drug as well and that also states the same s/e as Tax. Personally I just think that there’s not a great deal we can do about it and at this stage of the game I’ve given up worrying about it. Just want to get through each session without any bugs, which is more of a problem to deal with. I don’t know about carpel tunnel and what it may or may not bring to the table. Have you spoken to your Onch about it or as someone else told you it could be a problem? You don’t look old enough to have a grandson looking at your picture. I’m 62 in May and still waiting… He must give you some much joy and pleasure! Sounds like you have a nice and caring hairdresser just like mine. There are so many nice people around.

Raechi - I’m hummbled by your words, thank you.

Going to sign off for the night my husband will be thinking I’ve left the building!

Night to all and here’s hoping it’s a good one.

Beryl XX

1529

Evening March ladies,
My appetite is coming back at last, so have enjoyed a nice veg acasserole and dumplings for my dinner, may have a choccie egg for supper!!!
Dulcie- I fully understand the Manuka honey and ginger bics, but gloves and baking powder!!!
Ceej- love the hair, before I started chemo my onc said if I was planning to fly I would need to wear thigh length TEDS and take an Aspirin, due to the risk of DVT, so may be worth cjecking before you travel
Beryl- glad you got through the funeral ok, hope the hand eases, this chemo there is always something to watch out for!!Have a lovely family evening.
Parsnip-Your half way through now, hope the SE’s are kind to you, enjoy your early night.
Peanut- hope you enjoyed your little siesta.
Patchit-Well you’ve reached the halfway point, don’t feel guilty about anything, and having a cry is no bad thingwhen we need to. I have 1 more Fec due in 23rd then start Tax, so will foloow you closely.
Georgie B- I just tend to stick with hats and scarves, still can’t do the wig thing, hope the breathlessness subsides, and other SE’s are ok.
Raechi-hope you get your scan results tomorrow and all your questions answered, I think it’s the waiting we all find hard as our minds go into overdrive.
Woltsy- glad your veins are okand the physio is haelping.
Jayjay- fully admire you going commando in the supermarket, I’m not that brave yet.
Bettiescarves and funky earrings will be just fine.
Pargayan- Ithink a lot of us have struggled a bit more with 2nd one. Big hug to you and your hubby, you don’t need the added stress, hope he gets sorted soon.
Best wishes to all who had chemo today hope SE’s kind
Well going to have a bath and get into PJs.
Jane
Night All

1530

Hi ladies

Just a quickie re baking powder. You use it as a mouthwash if your suffering from ulcers or sore gums. Dilute in water and gargle to relieve soreness, as for the surgical gloves … No idea.

I’m back from no 3 so will post later, can’t be too bad well yet anyway it’s OH birthday so been for a Harvester nice blood red steak, god I hope I dobt pay for it later.

I’ll post later.

Love Carolyn xxx

1531

Thank you Carolyn…i knew there was a sensible reason…as i dont bake cakes lol…
Beryl i was teasing you…but you still look the ‘business’ in your scarf!
Ah the plastic gloves… erm they are the fine surgical ones recommended to stop you getting ‘germies’…a bit Howard Hughes ish!
I shall be wearing mine…to do all sorts of things…even emptying the bin out…doing dishes …and if you garden…2 thermometers…in case one doesnt work for some reason…do i sound just a bit paranoid…unlucky even…well i am! After the ONC telling me about the 2 ‘things’ in my lungs…she says to OH…‘not very positive is she’? lol and lol
Night hugs all round…
Dulcie xxx

1532

I forgot to mention…my roots needed doing and seeing i’m gonna loose it soon…plus i thought if the roots get done it might make my head very tender…so just went for the foils…i asked for a bit of copper as well as the blondes…its turned out PINK …AND she charged me loads of money! NOT going back there when me hair grows again…
Grumble over…only moaning about what a rip off it was…
I just got a nice hat/cap off Ebay …from Australia…none in the UK…
Oh went to see OH’s mum in intensive care…they weren’t sure wether to let me in …in case I GOT an infection…and not the other way round…it was sad…but when she rambled a bit and got confused…i thought she had lost the plot at nearly 98…but as we were leaving they told us they had given her morphine! Poor lady…i had her down for Alzheimers…

1533

Hello ladies me again

Oh Dulcie you do make me laugh, a 100 images flew through my head re gloves!

Feeling ok a little tired, but that could be because I had a bad night last night an overactive mind and couldn’t sleep. I met with my lively work friends yesterday for lunch and it makes my mind churn over what I’m missing at school. In fact my lovely nurse today was talking to me and asked what I did for a job and when I told her I was a teacher she immediately said I must miss my colleagues, so insightful and true.

Glad to hear it went well today Beryl, so brave to wear a scarf and good on you for adding colour, really most if us would say colour rocks at funerals, you mourn a close friends loss but also celebrate having shared your lives with them.

I’m with you Paragyan I wonder why all hair hasn’t gone and I’m weirdly thinking maybe it will now I’ve had no 3. In fact my OH keeps saying maybe they didn’t give you the right dose.

Don’t worry about the meltdown moments Rae we all have them, and a pattern seems to fall so my next one will probably fall in about a week. Love the new look photo though.

Joan I managed to get a morning appointment for next time, 10 am so done by lunchtime fir a change, didn’t get home until half five today. Although sometimes I wonder about hospitals, all afternoon the real Registrar ( not the boy) was wondering around as if he didn’t have anything to do, wouldn’t it make sense for him to have clinic on Thursday pm then and see us before treatment, I know you and Caren probably have to see them between each session because your drugs are different, nurse said that’s probably because of lymph nodes

Must admit struggled to find vein today but got it in first time but for the first time my hand is aching and felt really stiff when they took out the cannula. Let’s hope that goes away.

Great feeling though to be halfway through. Yayyyy :))))

Hoping all others having minimal se, Lydia hope Emend worked for you, Caren thanks for texts today. Hope your feeling ok Joan, they are a lovely bunch of nurses aren’t they and you do meet sone characters, I had an 81 year old man ( you get to know names and ages the amount of times you have to say name and dob when in FEC anyway) he was such a character a real tonic. Sorry if I missed anyone else but of course hugs go to you, and anyone visiting a hospital tomorrow.

Hugs to all

Carolyn xxx

1534

NOTEBOOKS .

Keep one. On phone and outside wine…

1535

Hirudoid for sore veins.
Frozen peas for tax without cryo gloves. arm… forgotten the other thing I was trying yo remember…

1536

Beryl penny brohn in bristol might BR worth looking at.

1537

Hello Chocciemuffin, you and me up late! Hello to all others too, not sure what is goin on with you all, as not read posts as supposed to be asleep, but can’t!

I had a call from the hospital today, telling me WBC is ‘a bit low’ and they will check it again tomorrow before the chemo 2. She said if it is borderline they will do it if not?..

The biggest thing that’s worrying me is my brother coming over to take me and maybe for nothing? He is really grumpy and I see him about once a year, so I do hope they don’t send me home again.

I have had 2 glasses of wine too, with my sister and Mum. and now can’t sleep. Will read thru posts tomorrow and catch up.

Night night to anyone still awake, I know you are Chocciemuffin!

Socks

1538

Socks I am a vampire…

Only on phone and can’t see what I type!

1539

Hello ladies! Thought I would be the last / first to post today! Steroids seem to have kicked in a day earlier this time, hence me being up at this hour! Or maybe it was my low mood yesterday, things churning over in my mind. Hope I feel better tomorrow. My dear friend came round last night with some lovely roses, a hug and a shoulder. It was so nice of her. Another friend phoned as she knew how I was feeling, and while she was only trying to help, she keeps trying to analyse why I am feeling down and I just want to say because I just am at the moment! Aren’t I awful! She is really doing her best and trying to help, but sometimes you just need someone to listen and that’s all! Phew! Glad that is off my chest, I couldn’t have possible said that to anyone other than you lovely ladies as I know you will understand where I am coming from, THANK YOU!!

Thank you also for your kind words re my little meltdown yesterday. You are all such a lovely bunch of ladies and I really appreciate having this facility and virtual friends. Its made a big difference to be going through all this with others in the same boat. xx

Parsnip, hope you find this session’s SE’s easier to cope with now your meds are sorted. I also have 4 to go, but you will finish before me as mine are 3 weeks apart so I am not quite halfway yet (3x Fec and 4x Tax). I should think the halfway point must be a lift for us, to get there and maybe just see the end of chemo in the distance!

Pargayan, so sorry to hear of your OH’s problems. Life is s**t sometimes! Hope you get the referral through quickly and that everything goes well for you xx

Dulcie, you are funny and I am sure your wonderful sense of humour will help you to get through this. Pink hair eh? Everyone will think you are doing race for life!! Hope everything goes well for OH mum.

Carolyn, glad to hear all went well for you today. Yes the nurses are all lovely on the unit. My next appointment is 10.30 so I will see you then, also on 30th for the clinic I think. I seem to remember your next clinic apt is 9.30? Caren has 9.00 and mine is 9.15, so maybe we could get that coffee afterwards if we are running to time and not 3 hours late? I spied some nice looking cake in the café yesterday!! I also wondered whether Rae might like to join us is if fits in with treatments? Hopefully we should all be on time, being so early. Have you tried Ibuprofen gel on your arm? It helps me, also my nurse suggested using a warm pad on it if it’s sore.

I hope everyone else who has been this week is doing well. Minimal SE’s and good sleeps I wish for everyone! Caren, hope you have carried on feeling better this time and you are managing better than last round.

CM, you are well random tonight! Been on the sauce? Hope it wasn’t mint with the lambs!!!

Socks, my WBC was 3 today, normal range is 5-11 I think. They still did mine and said as long as its above 1they go ahead, if it falls below that they have to get a doctor to decide whether to proceed or delay by a week. Hope everything goes well with your brother. He must be concerned for you if you don’t normally see much of him but he is coming with you to the hospital. Relatives eh? I have one sister who I never see (my choice, I know) but she hasn’t even sent me a text wishing me well, cold hearted c*w!

Good luck to anyone who is going tomorrow, hope it all goes well.
I am off to watch a recorded episode (or two) of Moving on.
Night all!
Joan xxx

1540

Morning everyone
Got my appt with oncologist this morning for review also got to go and get my parking permit for car park which is a great help to get the free parking as i am sure will be there at least couple of hours.
Patchit- hope you are feeling better today, horrible isnt it some days are s**t others feel better. I am feeling good at the moment but under no illusion once i have my 2nd one will be rubbish for a couple of weeks after but hey ho it has to be done but am thinking of you. I too couldnt manage without this forum.
Dulcie - was a little worried when you mentioned gloves!! but now you have explained see your point. I do remember now being told about the baking powder.Pink hair Hmm! Well at least you will get noticed.no dont think i would go back either.My sister wants me to get a stand out wig, am not that brave although could be interesting!!Woke up this morning and quite a few hairs on my pillow!!
Socks- hope your bloods ok and chemo not delayed, that would make things difficult.I went out with OH last night for tea and also had a glass of wine, only 1 but really enjoyed it.
CM- I keep notebook also, think you mentioned it before, good idea as I can look back to see how I was on certain days.
Marie 67- Had a lovely sleep thanks. Are you going abroad whilst you are having chemo? did you manage to get travel insurance? If you dont mind me asking where did you get it from?
Carolyn- hope your hand ok, nurse told me to get some ibubrfen gel also but not needed it yet!!
Had an email from a work colleague last night to say one of other very young colleagues has just been diagnosed with BC, she only had a baby in Feb, so I am a little shocked.I have sent her link to forum to see if it will help, wouldnt wish it on anyone.
hope everyone else ok thinking of you all
Hugs
Mary P xxx