Hi to all the May ladies. I’m feeling really fed up too I don’t know what it is - not been able to plan anything possibly. The middle of August and my last chemo seem so so far away. We have daughter’s friend lodging with us again until Friday and I’ve realised I’ve taken on too much - will have her again for the odd night but not for 4 nights! Feel bad for feeling like this but sometimes i have to put me first not someone else’s kid. My daughter has a cold and I’m desperately trying to avoid catching it. Had a bit of a hair meltdown on Tuesday - guy from Cancer Research UK was coming to guides to be presented with the cheque for £145 that we’d raised and I felt really self conscious and worked up about it. Texted my best friend and helper - who said I look fab whatever i wear wig or scarf and she really means it. If I had a sister I’d want it to be Annamarie. Hoping to go and see the torch relay on Sunday afternoon when it is in Bradford. Sorry for the rant and incoherent waffle! Julie
Hi julie sorry your feeling fed up. Its the part of all of this i was really not expecting. I think maybe the drugs do it to us. I think its the worst part along with not sleeping. I really hope you dont get the cold. Wash your hands all the time and towels every day. Thats what my GP said when OH was not well as well as the obvious things and it worked. Sending big hugs
Harry Duck x
Hi everyone , second juicing done 
feel a bit" spaced out " just now, have been given Cyclizine this time , hope they work better than the last ones , going to try eating earlier tonight , hope it stays down this time 
, think we all fell fed up at times , this is a debillitating disease, just want to be able to do "normal " things if and when I want to !!! Off for a lay down now .
Love and hugs to everyone xxx
Hi,
Just had FEC3 and am now done with the feccing stuff, moving on to Tax and hopefully herceptin next time! er…woohoo! 
and I’m getting a picc line!
Head full of cotton wool and strange thoughts, including a craving for malt loaf, so won’t post too much over the weekend in case it gets too weird. Also put my back out again laughing at someone in the office yesterday.
Hope everyone has an ok weekend, and hope those of you feeling fed up get some support.
Squeakymouse xx
Harry Duck - your baby is amazing - what a lovely long sleep - she must know that her mum needs her rest too! Long may it continue.
Squeaky-mouse - craving for malt loaf sounds quite funny but I crave weird stuff like Mulligatawny soup and really spicy food - which considering the ulcers are making an appearance again - is just plain stupid!
Hope everyone has a restful night.
L xx
Hi all
Josiejo and Julie - sorry you’re feeling fed up, hope things are getting bit better for you. The boredness is rough, but I just try and rest when I need to and wait for the better times to come around. I asked friends to lend me books and DVDs, though detective fiction seems to be about all I can cope with at the moment! A friend just had a baby so I’ve knitted him a hat and booties, and I’m doing a sampler for him too (I realise this makes me sound about ninety years old…) As Harry says - rock and roll!
I had second FEC yesterday and feeling pretty wiped out. Last time I was barely able to do anything for a week, because of tiredness, sickness and nausea. The onc changed my anti-sickness drugs this time to Cyclizine, Ondansetron and Emend, which the chemo nurse called the wonder drug. I wasn’t sick this time, and the nausea has pretty much passed. It has made the tiredness much easier to cope with, as it means I can use the computer and read. If anyone’s getting sick it might be worth asking about - I think they don’t give it as a matter of course because it’s more expensive, but I figure I’m worth it 
and as I’ve decided not to go for the free NHS wig I’m saving them about £60 there! I have a big hat that I wear to go into town - I figure it makes me look like I have terrible fashion sense rather than a chemo patient!
Love to all, Alix
Hi Buds,
I was so “glad” to hear that everyone is wiped out after chemo. And I too feel spaced out. When I told the chemo nurses they said there was nothing in the FEC to cause that as far as they knew. I cannot describe it any other way- its like being slightly removed from what is going on round you I find. Anyway have made decision now that after next FEC will use the first 5 days to totally rest as up to now have thought that making myself join in etc would make it more normal. Result is then total meltdown exhaustion on Day 6 and have to lie down for 24hours to get any energy back.
Also find the lack of night time sleeping strange. I am now awake at 3am and if the weather is ok(odd morning here and there)I go outside and sit in garden to listen to the birds and just try and get something positive from it-most positive thing is my chickens think its wonderful to be let out at 4.30am and egg laying has definitely gone up!!
the query about what to do apart from sleep (in daytime) during post chemo haze-I bought some wool to knit special friends “chemo” jumpers/cardigans but find that too exhausting so spend it reading, watching films, and comedies on Sky TV. .
Hope Elizabeth continues in her wonderful sleep through the night phase. It is so lovely to have that space to sleep yourself if you can.
Love to all
Hello everyone,
Rattles, glad the drains are out and hope you are recovering well.
HarryDuck, sounds like Elizabeth is being a little angel settling into her new room. Hope you’re feeling well.
Kitten-mad, good advice regarding wig. I find if I wear mine for more than an hour it makes me have a headache and feel sick, can’t wait to get home and take it off.
Itsmelou, sorry to hear you fainted, hope you’ve got more energy today. Has your red blood count gone low, I felt light headed when mine did but after blood transfusion felt much better.
JosieJo75, I’ve noticed the day after I’ve stopped taking the steriod I feel quite rough, tired, painful feet, numb fingers etc. This lasted 3 days this time. I presume it would happen the day after treatment without the steriods.
Giraffe50 - hope you’re not so fed up today. I think you’re right in that you have to look after yourself during chemo but it is easy to think you can carry on as normal. I went out and about yesterday and know I’d over done it when I started to feel tired and sick.
Squeakymouse, glad the FEC’s done and hope Tax is kind to you. I’ve had 2 of 6 so far and to be honest its not too bad, just seem to get 3 off days. Hope your back is better. Regarding cravings, I can’t seem to walk past the custard slices at the supermarket these days and I never used to eat cakes.
Ambarose, sorry to hear of your SE. As mentioned above I get that for about 3 days after I come off the steriods. Not pleasant and I try not to organise to do anything on those days.
Heard from work yesterday and am a bit worried. They have been paying me whilst I’m off sick which is great but they are going through a reorganisation and require everyone to take tests for new job allocations. I think they expect me to go in and do these tests. I’m rusty, my fingers are numb and I get really foggy headed and tired, plus I’m probably neutropenic so not in the best shape for stressy tests. I know my test will be the worst and they are looking to fire some people. Very worried as I have secondaries and don’t know if I would be employable by other companies as I’ll always need some treatment or other. Any suggestions?
Hope everyone has a lovely day and best they can.
Claire x
Hi Claire,
Sorry you are worried about work. Do you have a good relationship with your boss or anyone in HR who you could talk to? They might be able to arrange for you to do your test at a time between chemo sessions when you are feeling at your best, and they should take into account your previous performance etc not just the results of a test done on a particular day (after all everyone, not just people with cancer, has bad days for various reasons!). There is some info on the BCC website and a whole lot more on the Macmillan website about work issues. I looked this up because the part of my company I work for might be about to be bought out by another company so I have some similar concerns about my job security.
Hope this helps
Squeakymouse xx
Morning all
Claire - sorry to hear you’ve got work worries. I rang the Macmillan helpline to ask about working during chemo, and one of things I was told was that a cancer diagnosis means we’re covered under the Equality Act (which replaced the Disability Act).This means that employers have to make ‘reasonable adjustments’ to allow us to continue in our jobs. I found the Macmillan helpline (0808 808 00 00) very informative and useful, they put me through to a specialist team who may be able to give you advice. If you’re in a union they should also be able to support you through the process.
Hope everyone else is ok, and that you’re having better weather than we have up North…
love Alix xx
Hi Claire
Sorry to read that you have work worries, the link below will take you to the BCC ‘Employ’ charter which gives you and your employer information about their obligations to you at work:
http://www2.breastcancercare.org.uk/publications/financial-practical-support
Our helpliners are also on hand to offer you further support on 0808 800 6000 and the lines are open 9-5 during the week and 10-2 on Saturdays
Take care
Lucy
Alix- glad you are finding the sickness easier to manage.
Ambarose- the symptoms you are describing remind me of my own reaction to the steriods esp the sleeplessness. If you keep a diary, you could work out whether these pass once you stop taking the steroids.
Claire- I felt so angry on your behalf that you are having to deal with stress at work while dealing with cancer. I would be very surprised if you could be subject to a reployment process while on sick leave, or indeed any assessment/selection process. I work (used to!!) as a manager, admittedly in the public sector but as others have said, once you have had a cancer diagnosis you are protected under Disability Discrimination legislation- as others say, this give employers responsibilities to you. I would not be surprised though if they do not realise this, they may not necssarily be aware of this, so you dont necessarily have to go in all guns blazing, but like squeaky mouse suugests, a conversation with HR or you manager. As well as Breast Cancer Care, Macmillan produce a resource for employers and employees. Hope this helps a bit.
Love to all the buddies. I want to go for a walk but it keep raining!!!
Rattles, xx
Hello buddies, Claire - I agree with the others that your employers should not be able to make any decisions on your employment whilst you are away and you certainly shouldn’t be made to take a test whist you are officially off on sick leave! Hope you get it sorted soon x. Ambarose - your early morning garden ventures sound lovely, though its a shame you can’t sleep - I have the opposite and i can’t get myself out of bed in the mornings!! Giraffe/Julie - I can totally identify with how you are feeling - seems like our lives are in limbo and we cant make plans/take control until all this is over and it sometimes seems such a long way to go…Rattles - i hope you are feeling better and the wounds are healing up ok. I decided to take the dog out in the rain anyway as he kept giving me the look that meant i’d get no peace anyway until we went!!! AlixJ - i’m going to ask for EMEND too when i see onc next week as both FECs so far I have been very sick but not sure if my health authority offer it but cant hurt to ask. HarryDuck - big kisses to our clever mascot - sleeping through the night what a star!!! hope it lasts for you. To all you other May Buds hope you have a good weekend. i’ll be waving my daughter Meg off on her school trip to France on Sunday - she’s going till next Friday and seems such a long time and she’s only 10 - my baby!!! Wil be needing the tissues i think…Em XXX
Hello May buddies,
Thank you all for your advice. I will call the helpline to get the information I obviously need at the moment concerning work.
My OH is having a bit of a moment this evening. He’s been a bit glum all day, a shame as he works so hard and doesn’t get many days off and I hate to see him so sad. I asked him if he was OK and he said no, I said why and he said because of everything. At times like this I feel so bad/a failure/ a let down for getting ill. We had so many plans, finances all sorted for when we were 60 and would enjoy holidays together but that is now shattered as I’ve got secondaries and although I stay positive its not the best of places to be for the long term.
Sorry to be so down this evening, I shouldn’t really as my SE have gone and physically I feel fine.
Love Claire xx
JosieJo - if you are fed up of tv and reading etc., have you thought about doing some online surveys? It is not exactly taxing and it doesn’t take long to build up a voucher for £10 that you can exchange for some nice treats at Boots or other places. I have been reading a lot but nothing remotely intelligent. It can be a long day if you are not feeling too good though.
valued opinions are a good one to start off with - I do them anyway as I like ticking boxes!!!
I just saw your post Claire, and wanted to send you a cyber-hug. I think its sometimes as hard/harder for partners than for us and they have to try to come to terms with what is happening too.
I think sometimes when you feel ill you havent the energy to deal with the emotional dimensions of the experience, so you permanently have to do catch-up. So dont be surprised that it is when you feel physcially better, that you then have to deal with your feelings.
I dont in any way want to minimise the impact of having secondaries diagnosed but I heard a lady speak at Maggies who had been diagnosed with secondaries 10 years ago. Yes, she had issues, but she was doing really well. Have you had a look at the seondaries thread at all? I think its terribly important to hold on to hope, even if at times it fails.
Well done Kitten-mad! Sometimes I read catalogues - those ones you get in the paper or in the post. I like looking at the pictures. No words…
Thinking of you Rattles, xx
Thank you Rattles, yes, when you feel ill you just deal with that but when you feel OK the other stuff creeps in. I feel much brighter today but it is nice to have somewhere to talk about such things when you need to and know everyone understands. My oncologist has always been very up beat about secondaries and describes them more as a chronic disease that needs to be managed.
Hope all of the May buddies have an enjoyable weekend.
Claire x
I’m too sexy for my hair, too sexy for my hair…
Hope all the May buddies are having an OK weekend.
Squeakymouse xx
Wow lovely picture Squeakymouse.
Feeling much better today so its a good weekend here!
Its very quiet on here so everyone must be busy or poorly i really hope its busy xxx
Elizabeth slept through the night again last night and so did i. She is growing so fast now she really smiles and loves a kick under her gym. She has just about out grown her baby bath as well!
Im at the my face keeps flushing and cheeks burning stage of the lovely docetaxel. I finished my injections last night so am drug free for 10 days bliss. I really hate taking all drugs now even though i know i need them.
My next Chemo is FEC and im really not looking forward to it. Think its fear of the unknown. At least i wont need so many steroids. What do you have to take with FEC? Am i right in thinking the se are early on?
libby lou sends milky kisses xxx
Hello, feeling a big sad as just waved daughteroff on school trip to France for the week… Now sat in lovely evening sun on patio drinking some fizzy wine with OH. Harryduck- I haven’t found FEC too bad at all- just a bit sick/nausea for a few days and a bit of a yucky mouth for a while Corsodyl usually works for me). I’ve got last fec this week and then I move onto TAX which is scary. Squeaky- I love your pic! Went to school to drop daughter off and had to face lots of parents who haven’tseen me yet in headscarf so got quite a few looks but most were fine- I’m past caring about it now. Love to all my buddies, em xxx