Starting chemo in April 2012

[Guest user]

Dear all,

Glad to see more bunnies returning to the warren as each day passes. Although the forum is running very slowly I have to say that the usability from an iPad perspective is much improved. I can now scroll back through previous posts and do a number of other things which were possible but more convoluted before. The major thing that you couldn't do from a pad was upload a picture and guess what, you still can't. Previously I had resorted to getting the BCC technical team to do it for me and it looks like I'm going to have to do that again but I think they might have slightly more important things to do than upload a myxomatosis picture for me!!!!
In fact Mike from BCC ( who seems to be responsible for the changeover) uploaded my previous picture for me after I had emailed the help team. He wrote a lovely email to me and I have to say that he excepted immediately my strange story of warrens, bunnies and general myxomatosis!! He must have thought that as well as BC I must have dementia. I also think that just about most people are back to the warren with the exception to those who have just been FEC'cd. I think I just seems quiet as the website went down for ages and so people didn't post as regularly if at all and now we don't check/post as much and therfore there is not as much to read. Previously I had to check practically hourly otherwise you just couldn't keep up with all the posts!
Like Pixie and Littlechick I'm FEC 1 day 11 and apart from a headache, today has been pretty much a normal Sunday. I was able to get into the garden and mow the lawn and generally potter about without feeling ill. I am however already starting to worry about FEC 2 as all those ahead of me seem to have reacted very differently the second time round. I had hung my hat on the fact that once you had done the first you will know how your going to handle it etc etc. You just can't seem to second guess this pesky chemo cat.

Margietee I'm quite worried about you now. It seems like FEC II (the revenge) has really taken its toll on you emotionally. Yes we will get through this together and I too think you should get your paw looked at. Remember in each cycle there are bad days and good ones. Look forward to the good ones because they are coming for you.
Tea belly did you hospital give you drugs for thrush? I was sent home with both a suspension liquid which I take 4 times a day called nystatin and also a week of tablets which started on day 7. I did get thrush but when I told the unit they said for me to start the drugs earlier than stated to keep it under control. It's gone for me now.
Chris you are making me dread Tax but at least they have changed your antibiotics to calm things down. You can officially join the myxi sub group
Sharon did you get Emend last time or was there a reason why you couldn't have it. Has your ONC suggested any changes to stop you getting admitted this time round?
Sara b glad you doing well post FEC 1?

Anyway I will probably be up for hours as always since this chemo lark so if anyone wants to chat I will be checking in though the night

Vanns xxxx

[libby12]

Hi all not sure if this will work, been trying to post for a couple of days/ Sorry to hear those who have been poorley it must be awful feeling so low. Well I had second Fec on Thurs and cold cap, evrything went ok and I have been lucky again to have had no SE just a bit tired, Tracy my hair had a couple of days were it was coming out, especially at the back, this is were the cold cap does not have a tight fit next to the skin, but although the rest has thinned a little, I still have a head of hair,, and nobody would really know so I am going to keep up with the cold cap, this is day 26 for me, so keep fingers crossed, maybe just give yourself a little time before you cut it all off. Margeetee hope your hand is feeling beoutter it must be so painful. Pixie glad your feeling better its been a horrible time for you, and I hope you are getting stronger. Gadg et girl how is your hair!! Anyway will try and post this , it is getting me down a bit. Love to all Elainexxxx

[teabelly]

Hi Everyone what a job finding this thread and it so slow i have missed you all Well i cant believe i am having my 2nd FEC this week on thu it has come round to fast and i feel quite well apart from piles and thrush still giving me grief any suggest for relief appreciated
Christine sounds like your having a bad time with your scalp
Sharon sorry your hair coming out my scalp is very sore at moment and im finding it everywhere but cant build the courage to shave it all off yet im having my chemo on thu as bank holiday so cant see oncologist till tue will be thinking about you on wed
Sara12 hope you feel better soon make sure you ring up tomorrow if you arent feeling better
Margietee Keep your chin up we will get throught this
Pixie glad your feeling better i love your stories they always cheer me up
Love to everyone gool luck to all who are having Sparkly juice this week
Tracy

[Guest user]

Sorry not posted for a couple of days. Saw chemo nurse on Friday who thought my scalp problem was shingles. Sent me to dermatologist who says it's folliculitis. Started me on flucloxacillin as scalp is covered in painful spots. Whole scalp is painful. Was ready for cutting my head off and chucking it through an upstairs window at 4 o'clock this morning. It was so painful and had taken the max dose of painkillers. Eventaually went to out of hours at local hospital today and was given stronger antibiotic.Now I've got spots all down my arm! I had E-CMF over 11 years ago and it floored me. I thought that was bad but Taxotere is proving to be worse.
OH is trying to encourage me. Tells me I look lovely, but then he can only see outa one eye and it's not that good either! lol x
On a lighter note I had a lovely reflexology session at my local hospital as part of my treatment. OH is allowed treatment too so he is having aromatherapy next time I go.
Take care everyone. Good luck to everyone having chemo this week. Hope you all have better luck than me. I wouldn't wish this spotty, scabby head on anyone! Well exc ept my ex maybe!!
Christine xxx

[Guest user]

Sorry not posted for a couple of days. Saw chemo nurse on Friday who thought my scalp problem was shingles. Sent me to dermatologist who says it's folliculitis. Started me on flucloxacillin as scalp is covered in painful spots. Whole scalp is painful. Was ready for cutting my head off and chucking it through an upstairs window at 4 o'clock this morning. It was so painful and had taken the max dose of painkillers. Eventaually went to out of hours at local hospital today and was given stronger antibiotic.Now I've got spots all down my arm! I had E-CMF over 11 years ago and it floored me. I thought that was bad but Taxotere is proving to be worse.
OH is trying to encourage me. Tells me I look lovely, but then he can only see outa one eye and it's not that good either! lol
On a lighter note I had a lovely reflexology session at my local hospital as part of my treatment. OH is allowed treatment too so he is having aromatherapy next time I go.
Take care everyone. Good luck to everyone having chemo this week. Hope you all have better luck than me. I wouldn't wish this spotty, scabby head on anyone! Well exc ept my ex maybe!!
Christine xxx

[Guest user]

Sara12
sorry to hear you're having a rough time, am worrying about you now. You said you're feeling the cold, have you checked your temp? If its up pls dont wait till tomorrow, get checked out to be on the safe side, the sooner you get help the sooner you'll feel better.
thinking of you, sharon xx

[sara12]

Sara B, glad you made it back to the warren and that you have minimal SEs so far. Surprising what a difference the gauze makes, isn't it?

Pixie, I agree with you, the upgrade of the site seems to have been more difficult than it should have been, and must have been quite offputting for people who may have been feeling a bit weary and fragile and lacking in concentration. Anyway, it seems to have settled down a bit now, and hopefully all our other April people will come back to join us soon.
I'm glad you're getting through FEC1 OK. No need to tug on your hair - when it starts to come out it just slides out all on its own without you doing anything, believe me! My hair is littering everywhere in the house, but I don't have the energy to hoover it all up at the moment.

Margietee - sorry your hand is giving you grief and that you're still feeling down.... I think it's just par for the course and we will get through it all! Lucky you though to have your OH on hand for soothing cuddles.

I've still been feeling ill - sore neck with swollen lymph glands, sore kidneys, lightheaded and still chronically constipated, so my stomach is really bloated - delightful! I didn't take any of my normal meds this morning because my body just feels overloaded with drugs. Actually called the on-call nurse to talk it through and she recommended calling my GP's out of hours service. I tried to, but there was no reply and I didn't have the energy to take it any further. I've been trying to drink plenty of water and just dozing on the sofa wrapped up in a blanket as I'm feeling the cold. I'll see how I feel tomorrow and might try calling someone again if things don't improve. Not a good idea to feel ill on a Bank Holiday, I reckon.

[Guest user]

hello Bunnies
it does seem to be very quiet in the warren, i agree sara it is a palarva gettin on to site, prefered it as it was before. Spose we just need to get used to it.
Pixie, welcome back, glad to see your bunny ears are perking up again and thank you so much for the debenhams story, laughed so much i only just made it to the loo lol
Margee, glad your feeling better but you need to keep an eye on that poorly paw, maybe speak to chemo unit about it, you dont need anything extra to worry about.
Spacehopper, hi and welcome.
Teabelly hope your doing ok hun and like me getting psyched up for 2nd dose on wed.
gadget and chrisp1e and everyone else(sorry chemo brain is not good on names), how are you? not heard from you in a while.
As for me, on Thur head became very sore and hair was comming out in my hands, shaved to a very a number one stubble, have 2 things in common with demi Moore now, we share the same birthday and have been sporting her famous GI Jane look lol. Since then hair has been dropping gradually and have a fair few bald patches, OH says i look like a Dalmation :). Wore my wig yesterday when popping in to work to see a few of the girls, they all told me it looks really natural and is so close to my own style n colour that its hard to tell its a wig, made me feel much better about it.Today it is shedding quite heavily and making me itch, might shave it completely tonight and get it over with.
getting prepared for FEC2 on wed, cant believe how quick its come round. Just hope they can do something about the sickness this time as i really dont fancy getting admitted again.
Hope everyone is doing ok with minimal SE's and good luck to all those getting sparkly infusions this comming week.
Love to all
Sharon xxx

[sarabee2012]

Missed the end of my message off! Good luck to all the bunnies having treatment this week.

Hugs and hops
Sara B xxx

[sarabee2012]

Blimey what a palavar to get in and post something lol!

Okay FEC1 day 3 and minimal SEs so far. Been quite tired but no sickness and apart from the red wee and a metallic taste in my mouth little else to mention. OH has been a star looking after me and the dogs and we even got out on a social walk with some other owners this morning which was lovely.

Appetite okay too although am not eating too big portions and loads of jelly!

Sorry one or two of you are a bit down at the moment. Am sure it just goes with the treatment. Talked to a lady today who's 2 years post surgery and treatment and she says it will get better!

Thanks Gadgetgirl for the tips about the cold cap. Did ok with it actually although the change over was a bit painful until I put some gauze over my forehead. Lol!

Pixie loved the story about Debenhams only could happen to you. Should have offered you a 3d tv in compensation lol!

Pirate nanny ARGGGHHHHHH!!!!!!

[margietee]

Hi
Yes, the warren is a cold and lonely place at the moment. Come back others, we miss you!
Bunny paw is improving slowly but is still very sore - accidentally put it in some luke warm washing up water last night and nearly jumped out of my skin - it burnt me and turned the skin that had touched the water bright red. Very weepy night as a result last night and this morning I woke up sobbing. I could see the horrid chemo cat lurking in the corner, there was me, chemo bunny, lying in bed sobbing with OH snoring alongside me (he soon woke up and healed me with big cuddles). But where was I in all this? I feel I've lost myself, the real me, at the moment and I want my life back. It'll come, but isn't it hard going through this battle. WE WILL ALL GET THROUGH IT THOUGH.
Love to bunnies everywhere. Let's try and keep smiling whenever we can.
love, margieteexx

[pesteringpixie]

"if it ain't broke, don't fix it....."

Not sure why bc upgraded the site without doing trials of new site.... The myxi gremlins are having a field day.

In terms of living with bc, psychological support, particularly the opportunity of sharing experience, strength and hope with others, is a powerful aspect of our holistic well-being. We have now gone a week with an increasingly myxi bc forum and this is bound to be having a negative impact on many.

Now i know i am very grateful to have this bc forum, i don't have to pay a subscription and its a wonderful service, but can't help feel a rigorous risk benefit analysis would have helped. This is what companies do.... Imagine amazon going down for a week?

And yes, bc doesn't have the money for top grade web developers, but come on.....

I do hope our bunnies get back to the warren, no fun eating the clover on my own 😞

As for me, day 11 after FEC 1, and am okay. Feel better than i look. Look as if i have been dug up! Scalp tingling and i keep having a gentle tug, but still all hair in situ.

Hope margies paw is better and sara is on the up again.

Hang in there bunnies.

Much love

Pixie xxxxxxx

[Hyzenthlay]

Just a quick hello to the warren! Vanns, I was told day 10-14 was when the white cell count would be low, which is where I am now. I have my hand sanitizer at the ready and although I went into town today and am going round to a friend's for dinner, I am not going to visit the local rock dive to see my brother's band tomorrow!

[margietee]

Thanks Vanns and Sara12 for words of support. I'm feeling a bit brighter today and have just had facetime with 2 of my grandsons which is always a bright spot in the day. Sara I'm so sorry that you have a raft of other things to deal with, as if the cancer and chemo isn't enough. And Vanns thanks for the heads up about the ref to Optrex on the tips thread. I'll scroll through and find what it says. Christine, hope your scalp gets sorted soon.

I'm having a quiet day today. OH gone out, busy busy, and I'm about to vegetate in front of a DVD.

What can we do to lure the missing bunnies back? I'm sure they are all out there and will join in again soon. Shame the revamp of the forum came at this critical time when we are all just getting going, but the timing of such things is never going to be great for everyone and as an ex-comms manager for another charity I understand the reasons why they needed to do the revamp. It'll all be sorted soon and, like our cancers, will become a distant memory in time - though I think the cancer memories will linger longer that the forum probs. But not forever.

Have a peaceful weekend bunnies everywhere.

Love, margieteexx

[sara12]

Margietee I think we're at the same stage - my FEC 2 was Wednesday - and I'm having a bit of a struggle as well - got a bit tearful today. As I said upthread I was really sick and headachey this time, which caught me by surprise, and when I washed my hair, so much hair came out that it would probably make a good nest for a family of hamsters or something!
Then my GP phoned to say she was concerned about my blood test results - kidney function in particular - and that we needed to monitor the situation. I'm not surprised really - before dx I was already taking six different sorts of prescription drugs for various ailments. Now I have chemo plus three different anti-sickness, plus another four anti side effect drugs of various sorts on top of all that - I'm amazed that my kidneys are coping at all!
Usually I keep myself on an even keel but I guess it's inevitable to have the odd 'down day' now and again - we're not 'pathetic', just normal! Sorry to hear about your eyes and hand and hope you get some good eye drops tomorrow.

Christine - hope you get some relief for your sore head as well - it sounds so uncomfortable.

Vanns - not sure but think the second week is when your immune system is at its lowest - that's when I've been advised to start taking my anti-thrush meds, from day 5. Then it starts to recover again in third week. I have been around people who have colds but have kept about 6 feet between us and have used anti-bacterial hand wash if having to touch things they've touched - I'd rather do that than put myself in social isolation!

Pargayan - no I haven't been given any special cards about chemo drugs etc either but I suppose it's more necessary for people with a portacath.

Pixie - I'm glad you're back, and as Margietee said, you gave us a much needed laugh, but I'm sorry too that you're having to put up with so much aggro.
Well I'm off to bed now in the hope that I'll wake up in a better mood tomorrow!

[Guest user]

Hi bunnies

Poor poor margietee. It's fine to have some low days and the SE's do catch you out when they come from left field. We seem to fall into two categories. Those with minimal SE and those with severe. Therfore when you get caught off guard it can be quite debilitating. Just try to go with it and remember that each day you will get a little stronger. On the eyes front I think there is something on the tips for chemo thread that optrex make. If not I know you can get tear gel from the opticians for dry sore eyes. I used to use it as I often sleep with my eyes open ( weird I know).
Try to focus on your lovely grandchildren. They need their pirate nanny!!!!
I have been quite teary today and just sobbed through a film. I'm convinced I'm coming down with a cold which I'm terrified of. Does anyone know when that immune low period is from and until? Are you meant to stay away from people? My nephew is coming up tomorrow and I would like to see him.
Vanns x

[Guest user]

Nice to have you back and feeling better Pixie. And as they say, - It could only happen to you.
Saw chemo nurse today. At first she thought the rash and pain in my scalp was shingles. Sent me to dermatologist who thinks it's folliculitis. Took swabs for bacterial and viral infection and started me on antibiotics. Wish the pain would go away! I'm off to bed for a lie down.

Take care everyone!

Christine xx

[margietee]

Hi bunnies who are still with us (come back all the others, the warren is cold without you!)
Well, this afternoon I've been feeling like a real chemo victim bunny, but then I read pixie's wonderful posting and I am back now realising that there is light at the end of the tnnel. Pixie, you are amazing and we love you so much. Your story has had me in hysterics - and my husband, who says he loves you too!!!! I bet you weren't so amused while it was going on, but what a saga!!!! Go try the titanium out in JL. I wonder what'll happen there. Loved the bit bout the NVQ - well, loved all of it. Thank you thank you thank you for making me feel so much better.
So why have I been so down? FEC2 on Wednesday. Yesterday OK except for very watery sore eyes and a badly bruised bunny paw where the cannula was ... today I'm just about totally bald, even the stubble has gone and it all got to me. Bald chemo victim. Phoned the chemo nurse - the watery sore eyes are a recognised SE of the F drug, she said to get something from the doc or the pharmacy that contained no meds but would soothe the eyes - doc said everything had meds but ask the pharmacy. OH went to pharmacist. She said the same and suggested going to the optician. By this time it was 5.15 and I said to leave it till tomorrow. Watery eyed chemo victim. Paw keeps looming into my line of vision - bruising still there and no veins showing at all. Convinced it won't mend. Tears. Weeping. Most crying since all this started with the first discovery of the LUMP in December..... It'll pass. By Monday I know I'll be on the mend. Just bracing myself for more feeling sorry for myself over the weekend. And by comparison to other bunnies my SEs are so minimal. I feel pathetic.
So, you can see why your post was so important pixie! Oh and thanks to spacehopper - you are right, my grandchildren ARE WONDERFUL and so are my sons and their lovely wives ....
Lots of love to everyone in the warren. Come back soon missing bunnies. We need each other.
Love, margieteexxx

[Guest user]

Pixie you are back !!
Everyone who has found their way back to the warren has been asking about you. We were worried the myxi had overcome you. The warren has been a bit of a nightmare with all this updating !!! I feel sure that some of the technical people will find themselves in new jobs as security guards in debenhams over the next few weeks.
I had my first hit of the sparkly stuff the same day as you and started to feel altogether better by the following Wednesday. I saw the ONC yesterday and he confirmed no change in drugs just a little bit of adjustment etc.
One thing that does surprise me is the number of us that are NOT given Emend as standard. I had it and was still sick so god only knows what I would have been like without it. It makes me wonder exactly how expensive it is if they are prepared to let us suffer without it for the first go.
Anyway here's hoping that people will be hopping back from now on in .

Vanns

[pargayan]

Hi PesteringPixie, I have just had a good laugh at your Debenhams escapade. Not sure what town you were in but the sensors must be alot more senistive than Debenhams Ipswich as I have not yet set any off - thankfully.
What hospital are you having your treatment at as I am curious to know if anyone else has been given the cards. Sounds like a good idea to me especially if anyone intends to travel abroad.
Glad your first session went reasonably ok apart from the bowels. My hair started shedding strands on Day 19 of the first session even though I used colc cap. I stopped the cold cap on my 3rd FEC and it feels like I am now casting my coat and will soon be bald!!
x

[pesteringpixie]

Hi Bunnies!!!!!!

Gosh seems like the websits has had a dose of the myxis too. It is scrolling very slowly so not able to read posts I have missed but will catch up once the sites myxi is sorted.
My update - well ears upright and perky again and feel very well, my usual self and all hair still on head (wish it would get a move on as its over-due for a cut) I am now post FEC1 9 days
On Monday, I had been in hospital for enema (quite pleasant) and change of all medications as it would seem I have an allergy to metoclpramide and it was making things a zillion times worse. Got me sorted and instantly felt better (anti-histamines) so decided we could walk up to Debenhams as needed a gift card for mums birthday on Friday.

Walked gently, bought the card and went to leave the store........ oh my giddy aunt , I set off all the alarms!! the security guards swooped down on us, me as white as a sheet and stitches like football laces across my chest from the portacath, up my neck along the jugular, and a great big carrier bag of 3 types of anti-psychotic drugs and 4 extra large boxes of laxative fibre sachets - what drug smugglers use to get the drugs tied in condoms out of their insides..!!!!!! ( anti-psychotic drugs used for extreme anti-nausea in cancer treatments- Nozisan)

Of course, the security guard said "Can I see inside your bag madam?"

Bag has 3 boxes of these drugs and 3 large boxes of laxidol.

I ask for a chair and move away from scanners and they go quiet.

Guard is looking at all my drugs with interest and sees they are in an Essex County Hospital Carrier bag (he is clearly weighing up if I look the type to do a heist on a hospital pharmacy and then pop into Debenhams for a bit of Anthony Worral Thompson)

Husband then says " Its the titanium portal"

Guards says "Its the what?"

Husbands says " Titanium. You know, nuclear metal. Inside her chest, look that round thing protruding next to those stitches, Thats whats setting off the alarms, It's her. Not me."

Considering my husband was a chief inspector in the Metropolitan Police for 30 years, I can't help but feel he could have benefitted from hostage negotiation training.

Can you imagine what it all looked like? ... funny pale coloured woman, slumped on a chair, bag of anti-psychotoc drugs and laxatives, chest has recently been cut and big black stitches like laces across it - also similar stitches up neck alongside jugular.. , and there's a round orb protruding out of me under the skin that is made of the same metal as nuclear missiles.... and the alarms set off again"

I reach into my handbag and I thought this guard was going to wrestle me down to the ground! I assure him I am not going to press a detonator (bad use of word..on my part and guard has clearly not covered this one on his NVQ) Get out my purse and very calmly say look, its all okay.... and take out my 2 plastic cards. One says i am a patient on chemotherapy (explains drugs) and other says "This patient has been fitted with a titanium ventricular portal system that may trigger security sensor responses at airports and other scanning systems'

I then showed him the gift card and receipt and we were allowed to go. He suggested that for future visits, I go present my credentials before attempting to leave the store. Humpf. Always feel Debenhams is a very poor 2nd to John `Lewis

They say being a store security guard is one of the most tedious jobs - I could brighten up the whole of Essex, Blue water, the olympics....

Husband is now keeping me under house arrest before I get picked up by either the drug squad or MI6!

I have this portal in for at least 2 years. Think I may need to rethink my shopping habits!

Hope everyone in the warren is managing okay and do hope our site gets better soon so we can hop in and ut as before.

Much love

Pixie xxxxx

[Guest user]

Great picture spacehopper !

[Guest user]

Hi Margitee, I loved it! Your grandchildren sound fantastic I'm suprised they didn't put a parrot on your shoulder, how wonderful for you

[Guest user]

Hi everyone,
wouldn't really have been able to post over last few days as SEs in full swing after 2nd Taxotere. No nausea though - just sore throat, muscle and joint pain, tongue ulcers, painful scalp and hair and numb fingers as if that's not enough to be going on with. Oh not forgetting the trots and the WIND!
I had to shave my hair before my 2nd treatment as my scalp was painful and even to touch my hair was uncomfortable. My hair has still not fallen out completely so I still have the same problem this time and my scalp has broken out in painful acne. Tried to phone chemo nurse yesterday but not got back to me yet as I also have cold sores at the side of my mouth. Wot a picture I'm painting! Maybe I should just put a bag over my head till chemo's done.
Have been so tired over the last dew days and now tonight I can't sleep!
To crown it all the web site had changed and there was no conversation box appearing to let me post. Hope it's sorted out now.
Hope everyone in the warren is coping with SEs and not feeling too bad.
Christine xx

[sara12]

Hi all Thanks for good wishes - I feel a lot better today - yesterday was just awful. I'm just very tired this afternoon, but not feeling sick so far. Am going to put my feet up and have a little nap soon!

Re hair - washed mine this morning and enough hair came out to make someone else a wig, I reckon! Still have a fair amount left but have a penny-sized bald patch near my parting, so that's going to get very obvious soon. Scalp did get itchy for a while last week but it's calmed down again now - hasn't really been sore, but I've been using the cold caps so perhaps that helps a bit.

Went to hairdresser to have my NHS wig styled today. It's better than it was, but I'm not entirely happy with it really - I still think it looks very 'wiggy'. I might buy myself a better one sometime, if I can afford it.

Hope everyone's 'juicing' has gone OK today.

[margietee]

Welcome Spacehopper ... your pic is almost a bunny!!! Loved the comment about the David Walliams sketch - that's just how I felt before mine came off. For a laugh, look back to my posting at the start of this week when I described comments from my grandchildren when I went to see them on Sunday without my hair - pirate Granny.

[Guest user]

oh and I'm looking for a bunny pic

[Guest user]

Hi what happened on here, I've lost everything had to set up all over again and trying to find threads has taken a bit of working out. I was on the March thread before but thought I'd hop in here and love all your posts especially calling it a warren! Go bunnies
I had my first round of FECT on 2nd April, awful for a fortnight, great for a week, round 2 so much better taking metachlopramide then a week of zero energy (I've posted a req for tips re energy).
Amazing when hair started falling out, I was competing with the dogs my poor hoover. I'd got very worked up over losing hair as its always been long (47 so a lonnnng time!) but I suprised myself and scared everyone else when I showed them how it was coming out. In the end I looked like Andy out the David Walliams sketch enough was enough. I went and shaved it off at home and instantly felt much better. I had already sorted a wig which I've not worn yet. I'm wearing my 'Buff' £12.50 they're great, coolmax material and uv protective and very comfortable.
Big hug to all x

[teabelly]

Hi Elaine my scalps been a bit sore as well but i can shave it off yet im going to see how it goes we are missing alot of bunnies hope they find there way back Margietee you are doing so well with your sparkly juice hope it carries on for you Natalie i had fresh pineapple that gets your tastebud working hope we get all our bunnies back Tracy xxx

[margietee]

Hi everyone.
I tried doing a posting on Tuesday night but it never appeared so I hope this one gets on ....
Well, the chemo cat came out of her corner yesterday and leapt on this perky bunny yesterday afternoon for FEC2. She was a bit of a pain while the red E was going in, kept scratching away at my little bunny paw, but the brave little bunny fought her off and the rest of the infusion of lovely sparkly get well soon carrot juice went in fine. Chemo cat is back in the corner awaiting the next session!!!
Once again, I'm being really fortunate so far and other than being very tired I'm OK. Last time I was totally fine on the Thursday and the SEs I did have (luckily for me all pretty minimal) kicked in on the Thursday night on through to about the following Tuesday. We'll see what happens. Went to see the surgeon today for a quick follow up - he's happy with everything and the fat necrosis I mentioned in an earlier post requires no treatment. It should eventually sort iiself out.
Sarah12 hope you're feeling a bit better today. Elaine, hope your FEC2 goes OK today. Hope all others having chemo this week, first and second timers alike, that it you have an OK time.
Vanns, good that you are getting sicky meds sorted. Loved your idea about having hair shaved off for charity - I keep telling people that's the only reason why I've gone bald..... I answered the door to the postman yesterday without thinking about my egghead - he was a bit surprised!!!!!
Sharon, my scalp was really sore every time I touched my scalp when I was at your stage. SO much better when it's all gone. I've just had a delivery of bits from heads4hats including a couple of caps (rain forest baker boy and white polka dots) which I am REALLY pleased with. Their zandanas are OK but I think my heads perhaps a bit on the large side for them so they will be for garden use! I mae it to the gym on Tuesday and wore a regular baseball cap but went commando for my zumba class and got very supportive comments from everyone.
Natalie, I'm enjoying Sainsbury's old Jamaica ginger ale lo-cal for stimulating the tastebuds, also pure apple juice half and half with sparkling water is refreshing.
Hope the forum continues to sort itself out ... I'm missing the quick link to saved discussions. It's a bit of a palaver to get into our fav thread at the moment. Wasn't it terrible without it for those few days!
Love to everyone (come back soon chief bunny pixie).
margieteexx

[Guest user]

Good I'm glad you laughed.
If our leader pixie was here she would say that laughter is the best medicine. Let me know how you get on. I have just had some new bandanas arrive and I'm really pleased with them. I looked at all the silk/cancer/pretty ones but they are not really me. I'm a P.E. teacher so I'm more the sporty look. Anyway I checked out my online hockey store cos I generally wear bandanas when I play and amazing, Adidas make sports bandanas. I bought a red one and a navy one and they look really funky. I'm chuffed to bits
Vanns

[Guest user]

Hi Vanns
thankyou so much, you just made me laugh, OH looked at me all strange as to why i'm laughing at my lappy lol.
We have to keep smiling, will let you know later if i get the courage to "go for it".
sharon xxx

[Guest user]

Hi Sharon
Welcome back! I say go for it and cut it off, at least that way you are in control. It's only going to upset you when it really comes out. Imagine your doing it for charity !!! Perhaps we could do it together to raise some money for the poor sods who are about to lose there jobs over this website disaster !! Lol!
They must be having a nightmare.
Vanns

[Guest user]

Hi to all you bunnies.
So glad i finally found my way back to the warren, felt really lonely without all my allies.
Sara was really interested to read about the anti sickness suppositories, makes sence for when you cant keep anything down, i was really sick last time n ended up back in hospital so i will def be discussing with onc before next weeks dose.
Got up yesterday and it hurt to brush my hair, scalp felt bruised. Wore a hat in bed last night as i thought i might shed it during the night but its still there today. However still hurts to move or touch my hair and its comming out with the slightest touch, might end up shaving it off today in the hope that the scalp discomfort goes. Has anyone else experienced this?
Hope the rest of the Bunnies are all ok and find their way back to the warren very soon so we can all catch up.
love to you all
sharon xx

[Guest user]

Hi quiet bunnies,
not sure if you have all found you way back to the warren but here goes anyway for when you do.
Just been to see ONC to discuss FEC 2 (I'm calling it The Revenge in honour of Sara 's experience) although he is gonna hit me with the same dose again he is going to slightly change the anti sickness meds. He said its unusual for people to be sick with Emend but sometimes some of the other anti emetics can counteract it. I took a pill called Granisetron together with the domperidone which may have been the cause of my sickness. Next time I am going to take the domperidone via suppository in the morning before FEC then again at lunchtime. We are going to try to front load with it which should help to suppress the sickness. I have to say that although I was slightly horriefied initially about the suppository's they were much better than the pills. They got absorbed much quicker, they had less side effects and the dose was higher. If anybody is really sick it might be worth asking to give them a go. On the less positive note I now have the deeply unpleasant side effect that is thrush of the throat and gut NICE !!!!
Hope everybodys SE's are not too bad.

Sara hope you have managed to get the sickness under control. Get some rest. Sleep is natures medicine.

Good luck Sara B on your first juicing !

Come back bunnies. This warren is getting very lonely.

P.S. I'm no longer in the myxi sub group.

Vanns

[Guest user]

Hi all
I have been lost without all of my fellow bunnies to talk to the last couple of days, where have all our bunny pictures gone? Are they going to come back?
Good luck to those of you having first chemo this week and those that are having or have had 2nd chemo. I hope SE's are very minimal.
Well I am on day 6 today, still no sickness. I have gone from sleeping all day on Monday and being a bit off my food to suffering from insomnia for the last 2 nights and eating again. I have noticed that my tastebuds are starting to go though, anyone know how to boost these again? Someone suggested lemonade to me the other day. Also noticed that I am getting spotty....it's like being a teenager again, oh well small price to pay.
Pixie, hope you are doing ok and your ears are fully upright again now.
Will post again later.
Love and hugs to all in the warren
Natalie xxx

[Guest user]

Hi all
I have been lost without all of my fellow bunnies to talk to the last couple of days, where have all our bunny pictures gone? Are they going to come back?
Good luck to those of you having first chemo this week and those that are having or have had 2nd chemo. I hope SE's are very minimal.
Well I am on day 6 today, still no sickness. I have gone from sleeping all day on Monday and being a bit off my food to suffering from insomnia for the last 2 nights and eating again. I have noticed that my tastebuds are starting to go though, anyone know how to boost these again? Someone suggested lemonade to me the other day. Also noticed that I am getting spotty....it's like being a teenager again, oh well small price to pay.
Pixie, hope you are doing ok and your ears are fully upright again now.
Will post again later.
Love and hugs to all in the warren
Natalie xxx

[teabelly]

Hi Everyone i have missed you all not sure what im doing on here and its so slow now well good luck to everyone having sparkly juice this week Elaine hope you go ok today thinking about you Sara b hope all goes well today with your first FEC Finally got a curly wig sorted yesterday i love it looks like my hair pick it up on tue Hope your ok pixie not hear from you hope SE effects are getting better Love to all Tracy xxxxxx

[teabelly]

Hi Everyone i have missed you all not sure what im doing on here and its so slow now well good luck to everyone having sparkly juice this week Elaine hope you go ok today thinking about you Sara b hope all goes well today with your first FEC Finally got a curly wig sorted yesterday i love it looks like my hair pick it up on tue Hope your ok pixie not hear from you hope SE effects are getting better Love to all Tracy xxxxxx

[libby12]

Hi all really missed not being able to post,well 2nd fec today I just hope I continue to feel well. l hair is shedding quite a bit, but I am not sure how much is normal with the cold cap so I will quiz the nurses today, it really upset me yesterday as it seems to be coming out from underneath mostly, oh well I will just have to wait and see. Hope everyone is not suffering too bad with any SE thjis morning. Also seeing oncologist today not sur e why but this is probably routine. Post later after the sparkly medicine is done. Love to all Elainexxxx

[libby12]

Hi all really missed not being able to post,well 2nd fec today I just hope I continue to feel well. l hair is shedding quite a bit, but I am not sure how much is normal with the cold cap so I will quiz the nurses today, it really upset me yesterday as it seems to be coming out from underneath mostly, oh well I will just have to wait and see. Hope everyone is not suffering too bad with any SE thjis morning. Also seeing oncologist today not sur e why but this is probably routine. Post later after the sparkly medicine is done. Love to all Elainexxxx

[libby12]

Hi all really missed not being able to post,well 2nd fec today I just hope I continue to feel well. l hair is shedding quite a bit, but I am not sure how much is normal with the cold cap so I will quiz the nurses today, it really upset me yesterday as it seems to be coming out from underneath mostly, oh well I will just have to wait and see. Hope everyone is not suffering too bad with any SE thjis morning. Also seeing oncologist today not sur e why but this is probably routine. Post later after the sparkly medicine is done. Love to all Elainexxxx

[sara12]

Sara B - hope all goes well today with FEC 1 and that you find you can tolerate the cold cap. Worth taking some paracetamol just beforehand and also worth having some gauze put across your forehead - it cuts down the discomfort, I found.

My FEC1 was fine initially, I felt a bit queasy, but the anti-sickness drugs worked, so I hope that's the same for you. However I had FEC 2 yesterday and was taken by surprise - I was really sick this time and don't know why it was different. Still feel queasy and am really hoping anti-sickness stuff works today.

[sarabee2012]

Hello Bunnies!

Popping back to let you know that I am healed enough now to start chemo so my first glitter infusion is tomorrow!!!

Asked loads of questions and saw two ladies wearing cold caps so will be trying it out to see how it goes.

Hope you're all doing okay and glad we're all back in the warren.

FEC1 here I come.
Sara B xx

[Guest user]

Nice one Julie, don't be fooled by the sparkly stuff though. Make sure you load up with your meds as it can lull you into a false sense of security. I hope everybody makes it back to the warren as I'm feeling a little lost without all my fury friends. Where are you bunnies???????

[Guest user]

Hi Vanns, Glad you've made it back to the warren! Just hopping across from the May 2012 to say that I had my first EC today - so far I feel OK - fingers crossed it continues!
Julie

[Guest user]

Do we have to type in the word verification every time we post a comment

[Lucy_BCC]

Sorry the site is running slow at the moment we are aware of it and are trying to fix it, glad you have both made it on!

Best wishes
Lucy

[Guest user]

Thank goodness the warren is back online

[sara12]

I'm glad the forum is up and running again - I missed it - but the response time is extremely slow - is anyone else having the same problem?
Had FEC 2 today and am feeling lightheaded and really queasy - worse than the first time round. Have taken some anti-sickness pills already - before the one due 12 hours after drip - and have eaten ginger and mints to try to ward it off.
I'm due to go for my wig restyling tomorrow so I hope I feel well enough. Don't want to put it off because losing increasing number of strands now, despite treating hair gently. Definitely going to have an early night tonight.
Hope everyone else is suffering minimal SEs.