Hello Maisies - another late evening post. I'm absolutely exhausted - this is my 'good' week, so I've had a lovely but really hectic few days, and I 've realised that although my SEs are minimal at the moment, I'd really underestimated my energy levels. Forgive me for not mentioning most Maisies by name, but you know I'm thinking of you all, especially Annie and the rest of you who are being dunked this week. Pendragon, know exactly what you're going through re smoking OH. Will pm you tomorrow, not tonight bcause I'm falling asleep!
Very goonight to you all zzzz xxxx
hi maisies, thanks for all the ideas re OH and his smoking, nothing is working I even went up to bed this afternoon and said very loudly now you can smoke in peach!! he says its his house and he's always smoked so tough he'll smoke in here, told him i'll talk to my oncologist he said you do that and if he says anything i'll tell him the same, so i think id best give up.
Still very tired though had a better night sleep thank goodness, I hate these two days each week waiting to see if i can have chemo, daft really no one really wants it but none of us want to miss one out!
dont know whether people remember but my chemo nurse said bout referring me to counselling cos of this and other things that have happened over past few years well got appt this morning, go next tuesday before my onco appt, its just a meet up one to see if they can help but its with a specialist Mac/millan physcotherapist i'll let you know how things go hopefully it'll be a worth while experience.
chezz hope you are coming home huni, i know i would hate being in hospital again, hugs and best wishes winging there way xx
all those up over next few days hope things are not too bad and se's minimal if at all possible. think i need the rec for vodka too, would be ready just in time for me lol.
taste buds bit better today, though tingley tongue atm, actually tasted salmon at lunch mmm,
well good luck ladies tc xx
Roller, I am glad I am not the only one with nose and smell problems. I have this nausea feeling at the top and back of my nose all the time, it is really weird. I hate loads of smells now, its really odd. Maybe it is the lack of hair that is causing it.
I have ballsed out the hair thing with everyone and walk around baldy. Once peeps get used to it, it kind of makes you accept it yourself somehow. Its the way people look at you the first time they see you bald. They dont know where to look. i am talking friends and family who are used to seeing you with hair. Its for them to deal with, not me, but it does feel horrible.
My hair is really curly anyway so I am hoping mine grows back straight this time, would be nice to have a change...lol
Good morning ladies, it seems everyone is slowly on the up again.
Roller, so glad they are stopping the jabs, just eat the good stuff to get the bloods back up. I chose to have FEC chemo so I didnt have to have the jabs. Ask your GP or unit for Omeorazole, it is great to stop heartburn and indigestion. I used to use ranitidine until they gave me those, there is no comparison.
Sam, I understand about the embarassed feeling with OH and friends and family. Why on earth do we feel embarassed? Its a crazy emotion, we have nothing to be embarassed about. Maybe its becasue we feel naked somehow without our hair, I dont know.
Angie, kick his butt into touch and tell him to smoke outside. I hate the smell now and I used to smoke quite heavily until 5 years ago.
Hope everyone has the best day they can, lots of love and hugs to those still suffering
I ahve had another busy day, cooking to stock up my freezera dn a trip to IKEA to get bedroom furniture for my son and of course their lovely ematballs for lunch. Was cross when i got back though as the bedside cabinet is damaged so have to go back.
Rollercoaster we have three boys 22, 21 and 19 and a girl 14. they were very responsive and I think I have alreday seen evidence of change- clenaing up after themselves. Whether it last is another thing. OH works away at the moment so they need to help- don't tell anyone but I may really lay it on if I am not to bad just to make sure they do what they should be doing anyway!!Geneve, I am going to start walking daily from tomorrow- I quiet enjoy walking but there always seems to be something else to do but I can not go back to work twice teh size I was when I left- they will think there is a new teacher.
Pendragon, counting to 10 will be your mantra for the next two weeks by the sound of it with OH. I know you have already had a battle with him regarding the smoking obviously it hasn't sunk him with him. Hope you are soon feeling a lot better and your energy returns. Are you sure you haven't given it to that lady of yours who is 107! Amazing.
How great Christymay and Dee that you are meeting. I met with Pendragon and Deb a few weeks ago and it was lovely. x
Ju- I have images now of you with velcrow stuck to teh back of your head. I know you really struggled with your hair loss and at the time I told you I wasn't worried about losing mine but now my time is coming I am dreading it. I just don't want Oh and kids to see me bald I feel embarrased. Now I know how you were feeling.
Spikeyred, good to hear you had agreat weekend at you rparents Golden Wedding, my parents celebrate theirs next year. It is such an achievement these days.
Annie glad you are feeling human again.
FEC2 day 14
So glad you’re feeling better, Rollercoaster, the first week or so is definitely the worst. I’m just into final week of cycle and feel pretty good – so I have a packed social life this week before shut-down next week!
Spikeyred, sounds as if you’ve had a busy but lovely weekend. I’m glad you’re feeling stronger now and it’s good to know there’s a world outside cancer, just waiting for us all
Glad about the sleep Christy,and glad you’ve had such a good day. Make the most of it while you can! Take care.
Lols I’ve still got eyelashes and eyebrows, too, though they’re thinner – here’s hoping. I haven’t lost all my hair either, but as with first treatment day 15, more starting to come out. I like your mantra. I was reading a mag in hospital waiting room and read Dawn French on what her mum use to say: ‘The only way out is through’ – so there’s a reason for what we’re going through (it’s giving us a future) and also as we go through it we’re getting nearer to the way out, and a world after cancer Bring it on!
Annie, glad you’re feeling better – have a great few days and good luck with no 3; you’re bound to feel scared .Will be thinking of you - my turn next Tues! Spent lovely day with my friend in Plymouth but was terrified as we walked along the seafront, wild and windy and hanging onto my wig for dear life!
Pendragon you poor thing, its’ awful feeling so ill and wiped out. Hope you have a better few days soon. My OH is a smoker too but he’s only allowed to smoke outside. Can you make him see the connection between his cancer-inducing behaviour and the fact that you have done nothing to deserve your cancer? I found that subtle guilt trips work wonders – get support from your family and friends, sometimes you can’t fight habitual smokers on your own. I do understand what it’s like for you
GIlly, glad you’ve found something to help, thinking of you as you go through all this horrible stuff
Breezey, let’s hope all the new meds help you this time
Thinking of all Maisies. Good night and take care xx
Jaw and face seem back to normal today thank goodness, just pain in the veins in my chemo arm, but am trying to find out about some oils to massage in to help them.
Ju, I love your chant for the day, we all need them to get us through the tough days, it is a very hard journey both physically and emotionally.
Hope we all have the best day that we can
morning maisies, hope things arent too bad for thos suffering the blessed se's, been up all night weeing, think ive managed bout 2 hours in all, then OH woke me up to see if i was ok lol. bone aches today god im sick of feeling bad, just want one day i can get up and be full of energy!
hope chezz is on the mend poor thing thinking bout you huni xx
good luck to all those up today, hope things go well for you all.
/OH is off the next two weeks but is already driving me mad smoking like a chimney in front of me, blooming men lol
one of the ladies i looked after is 107 today bless her , she went out yesterday too, xx
Hi everyone, feeling human again after a rough day on Saturday, but only three days until next dose!
Am seriously wondering whether I'll be able to manage yet another FEC and then the three TAX sessions, the bone ache and tiredness are so draining.
Anyway, glad to hear some of you are feeling much better and hope those who are still down recover quickly. It really is a day to day thing, isn't it?
Lovely post Ju, just the inspiration I need! Will PM you about the Gelclair as I need to get prepared for next time and don't think my Unit is going to be very helpful. If it works I can try my GP.
I'm glad I didn't invest in too many hats, I wouldn't dare go out in one in this wind - think of the embarrassment if you lost it in the street....
FEC2, day 13
Hello Maisies, I continue lucky, holed in by appalling weather in Devon, but happily reading and eating cake. I’m so sorry for all of you who are feeling so rough. You’re right Deb we’re all in it together, the support is wonderful. The way I get round trying mention people individually is to open a word document on top of the forum site, then minimise it in order to keep looking at the site. Then I copy, paste and post. Probably there are far more sophisticated ways of doing it but I find it works really well, being a technology Luddite.....Thinking of you all and sending you lots of love.
Christy thanks for keeping in touch, it means a lot
Poor Gilly, you must have been feeling awful, hope it’s sorted soon, and enjoy your horses!
Lols, hope the improvement continues – I find jigsaw therapy great too. Lovely friends you have – and crying is a release – you often feel better afterwards. It’s a good thing because I think we all do a lot of it!
Rollercoaster, that’s happened to me too, before I started using the word doc first. I was so so fed up so I sympathise
Poor Gilly, hang on in there,it will pass, but it's so tough
Samj – try walking a little bit each day, then build it up. Hope your energy can pick up by the last week of the cycle. I’m the same, not using up energy teaching and eating constantly!
You’re not a wimp at all Venice, we’re all scared, my onc said it doesn't always get worse, although the tiredness usually builds up
Good night Maisies. Hugs to all.
Well me and the OH have just sat the kids down (all 4 of them) and explained what is going to happen when I start chemo. Went through a few SEs but said we don't know what I will be like until it happens. I have also said I will leave the info about SEs in the lounge so they can read it when they want to. Also had a chat about expectations of them ie. stop being lazy little gits and clean up after yourselves. High expectations set so if they get half way to them it shouldn't be too bad!!!
gill sorry to hear you are feeling down. I know it's part of teh course but if you are anything like me it suddenly hits me like train, I then want to curl up and hide and not speak to anyone. Just think 1 more tomorrow is one less and nearer the winning post. xx
Ju your friend sounds fab, how thoughtful. How's teh jigsaw coming along, I finished mine a week or so ago and I can't bear to break it up- will nee dto though so I acn get anotehr one on the go. Please don't cry on your jigsaw else the pieces will expand and then they won't fit. 😉
Christymay, sorry to hear you are having a tough time with round 2. Hope you are feeling a bit brighter day by day. xx
hi thanks lois ,rollercoaster ,and christymay for your replies always makes me feel better after posting on this forum .Thankyou all for your thoughts for me tomorrow and yes Lois i will be ok and strong thanks ,just a moment of weaknes .Love Gill x
hello ladies really quite worried about next chemo tomorrow. Have been reading that number 2 can be worse re SE but just got to get on with it. . Not having the cold cap so thats a bonus am feeling really down today.So sorry to hear chezza in hospital hope she is out soon. Has anyone had any problems with a cough on rampril the nurse wanted to send me for a chest xray and also had a really horrendous pain in my side but did try to move a cabinet on my own do you think the chemo weakens your muscle power So sory to be such a wimp today .Wishing you all well love Gill
Gilly that sounds painful. Ju's idea of one of those wheat cushions could possibly help.
2 hour walks- blimey- I nee dto start walking to shiftsome weight. As I haven't been at work since June so haven't been running around afte rmy little charges i have put on weight.
christymay hope those SEs soon do one!
I texted Chezza yetserday, must be so hard being stuck in hospital with having a young family.
Rollercoaster hope your energy soon returns.
Hope all you other Maisies are ok. xxxx
Ju, the gold standard down here is TAC too but they call it AC-T, same drugs but you have 4 AC then 4 T. My onc wanted me to have it every 2 weeks but I declined as the regime is too tough on the body for me personally, I think I would have not completed it so was better for me to do a lesser regime and get through it.
Have eaten this morning and so far so good. Still very sore and sticking to bland food today to see how it goes. Still swollen and painful though. I have also got some vein cording in upper arm so that will get some heat treatment today along with my face...grrr.
Hope you all have the best day that you can girls xxxx
Hi Lols just popping in from the June Jewels to say that I am glad that you are feeling a bit better now, have been thinking about you. I have just one more TAC to go now on 26/09, thank goodness! You and the other Maisies will get there, take care everyone and keep supporting each other. I really don't know how I would have coped without the support of the wonderful ladies on this forum. Xxx
FEC #2 Day6
Well I ended up with a trip to hospital last night to find out I have suspected saliva stone/s. This is caused by the anti sickness that reduce saliva production and the dried up saliva in the gland becomes granulosed and forms a stone. Once off anti sickness and normal production is resumed, the gland is blocked so when I try to eat I am in pain and a huge lump appears on the outside of my face at the back of my jaw/under ear. Got to try heat and massage on it today and eat only bland soft food to try and keep it calm. Worst ways they have to remove the stone or saliva gland with surgery. Ffs, why couldnt I just get ulcers and not something weird.
Apart from that I had a great sleep last night and am going to see my horses for the first time this week, so that will make me smile (if I can) lol.
Hope everyone else is doing alright today, have a good day girls
Evening maisies, just a quick message I am away for a few days now and internet is hit and miss. Poor Chezza being stuck in hospital I hope they get her sorted and she gets home soon. Sorry that quite a few of the maisies are having bad se's and struggling, I hope they pass quickly for you girls. Emotions do seem to be very raw whilst going through this and tears never seem far from spilling out over the slightest thing. The one thing for sure ladies is that we are all in this together and hopefully we can give each other a shoulder to cry on when needed. Take care everyone, sorry I have not mentioned you individually but I can't scroll back when writing a message but send my best and hugs to you all, sleep well love debs xxx
FEC 2, day 12
Hello Maisies, I’m so very lucky because today I seem to have left the worst of the SEs behind (hope it’s not famous last words!) and had a lovely afternoon out in the Devon sun walking in National Trust gardens and parkland with my daughter, then yummy tea. First outing I’ve really enjoyed since last treatment day. I hope some of you are having a good day, and lots of love and sympathy to all of you who are going through bad times. I wonder if other people have found treatment 2 much worse than treatment 1? Please don’t let it get steadily worse! But I’m very lucky because I haven’t got to have dreaded tax, so am counting my blessings.
Poor Rollercoaster and Christymay, I do hope you feel better soon. It must be so wretched trying make yourself eat and feeling exhausted. Christy, I’m sure your friends love to see you and completely understand why you aren’t on form. So sorry about horrible nightmares, may you blessed with some good sleep soon
Gilly R, hope you’re not feeling so bad this time. Thanks for update on poor Chezza. Let her know we’re all thinking of her
Annie and Jacquie, best of luck with tax etc – this will be even more difficult for you. You’re right Annie, best to see this as one horrible year with a good end in sight
Lols, sorry to be ignorant, but what is TAC? So sorry it’s making you feel wrecked. Thanks for lovely message , really good of you to mention everyone. Why can’t I stop eating despite ulcers etc, when some people can’t face food? I’m just the same as you with food, Lols and Breezey. With my wig and a bit of weight gain I look suspiciously healthy.
Rollercoaster, glad you’ve had some good sleep, you deserve it
Best of luck for chemo, Samj; have a wicked weekend
Pendragon, my fingers are peeling too!
Hi Coco, how are you feeling – what stage are you at?
Love and hugs to you all. Good night, Maisies xx
Morning maisies, sorry I have been AWOL but thanks for the concern. Echo was good I think. Yesterday I had a manic day, dentist for a filling, shopping, cleaning hanging pictures and then pre chemo assessment. Well I am having a picc line on the 25th then start chemo on the 27th. I could have started next Friday but there are two reasons I chose not to. First, the nurse who does the picc line isn't there next week so I would have had to have had one session via cannula then go back for a picc line at a later date. Also, remember I wanted to go to Greece for some friends wedding last week, well it is there wedding reception a week today and we also have tickets to see Madness next Sunday so I thought I would have one really good weekend before it starts. Hope SEs are minimal. I won't be on much ove rteh weekend as OH is back from working away all week. Have a good weekend where possible. xxxx