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so so tired

25 REPLIES 25
superpen
Member

Re: so so tired

Hi JAne,
I am on weekly Taxol too - have had 18 so far, and Avastin on alternate weeks.
I also have it on Wednesday. Feel pretty good from the steroids and Benadryl that I get on that day, except that the Benadryl makes me zonk out with a lovely dreamless sleep for the whole day. Then I feel reasonable on the Thursday, but go downhill in the evening, do not sleep well at all that night and feel lousy on the Friday and/or Saturday.
My solution is to sleep really late in the morning - I was never a morning person anyway, and then get friends to invite my family over for dinner on Friday night! This way my kids get a good meal, and I am distracted from how bad I feel!!
Last week my onc. said that I could have a break of 1 week after every 3 cycles. Thank goodness! So I have a break coming up this week - shame they go by so fast.

So that means I am totally there for the sleepover!
Penny

kittybuttoon
Member

Re: so so tired

Could we send out for our fantasy breakfasts? Mine would be eggs benedict or (to my shame) sausage&egg mcmuffin from McDonalds, with hash brown on the side. And an ensuite!! ( My bathroom is two floors down from the bedroom)

Deirdre
Member

Re: so so tired

Oh Jane, I do remember how all I craved was to be left alone - I know my friends meant well when they rang or called round, but the fatigue meant that I couldn't concentrate on conversation at all.

And I don't know how I would have even got to a girlie sleepover.

But putting that aside, it would be nice to know that I had a quiet, warm, comfortable room guarded by women with instructions not to let anybody distrub me!

Gone with the Wind would be good. I've watched it so many times I practically know it off by heart. But now I know what a tragic life Vivien Leigh had I always feel even more sad when I watch it. She was so lovely to look at.

Deirdre

KatieP
Member

Re: so so tired

Only if we get some sleep!! My daughter's sleepovers involve being awake giggling and watching DVDs until 5 in the morning, needless to say she is fit for nothing the next day. We need duvets, a foot spa and someone to do a nice foot massage, how about Gone with the Wind ! Great for a bit of escapism!

bikinggirl
Member

Re: so so tired

That's ok Jane you not putting a damper on our fantasty sleepover....

Well put you in a comfy room with everything you want and a big

DONOT DISTURB sign on the door.....

Then if you feel up to joining the rest of you can.....

Now girls how about Sex and the city and while we are watching it
we can put our very girlie shoes on (whilst lying down of course).....

Mama Mia with a booby prize for the worst voice,
cause I bet we would all start to sing along.

Shall we order breakfast in bed for the morning???

JaneRA
Member

Re: so so tired

Sorry to put a damper on the sleepover. My tiredness when its bad is so bad that I would never be able to cope with a DVD or a novel or back massage...if I could do any of these,anything than lie still, then it wouldn't be what I call tiredness.

Jane

Deirdre
Member

Re: so so tired

Yes, at my sleepover there will be the most comfortable beds ever designed - no more achey hip every time I turn over - the softest bed linen, lovely smells to bathe in and ungents and potions. The champagne won't give me heartburn. There will be back massages without any worry about "should we be doing this?". Oh, and my nails will be long enough to get painted with sparkly nail varnish and, and and..... a really good feelgood DVD - it's about time there was something that made me feel as good as Forest Gump did first time I saw it. Suggestions?

Deirdre

ForumMember
Member

Re: so so tired

angee
Its so good to see you posting again and wouldn't that be great a giant sleepover. But I couldn't so the sleeping on the floor but anymore. Need to have my nice comfy bed now

love CAroline

KatherineM
Member

Re: so so tired

can I come to the Giant Sleepover

Linen sheets
Glass of champagne
Warm chocolate Brownie
Film choice:Sleepless in Seattle, any thriller with Denzel washington, Officer and a gentleman, .....
Spa pool and or treatments.

Would be nice wouldn't it?

CathyX

ForumMember
Member

Re: so so tired

Hi Angee

Look forward to the email - have been thinking about you a lot.

Take care.

xxxx

dm1968
Member

Re: so so tired

Hello All

Put my name down for Giant Sleepover. Although I have no trouble sleeping, just the odd night when interrupted by my 4 year old, and then the "nearly" 2 year old starts singing and humming at 6.10 every morning pretty much.

Just feel completely knackered all the time and am actually in bed right now on laptop as off to sleep soon to see if helps me.

Take care all, and lets hope the new year brings new energy for us all LOL

Love
Dawn
xxx

bikinggirl
Member

Re: so so tired

Oh yes what a great thought...

A giant sleep over,

Hot chocolate, (or champagne) marshmallows lots of
girlie films for those of us who can stay awake!!!!!!

My daughter is 10 and I think it must be great to be that age with the sleepovers they have!!!!

angee
Member

Re: so so tired

Hi Carol,

Oh my goodness, 34!!! Makes my 4 cycles seem a bit pathetic ... haha! I have had two blood transfusions since the start of my chemo which has helped and am having nuelasta injections for my WBC. I saw something on the telly about LifeMel honey last week thats meant to be good for blood levels during chemo (don't think its scientifically proven) but I was thinking I might give it a go just out of curiosity. Probably due another transfusion soon.

Whilst I wouldn't wish this fatigue on anyone it is kind of reassuring that you're not alone.

Must email you soon for a proper catch up soon.

Angee xxxx

ForumMember
Member

Re: so so tired

Hi Angee

Good to see you posting - sorry to hear that you're back on chemo. Looked at my chart on Friday when I had treatment and realised that I've just had my 34th cycle of chemo which sounds horrendous!

It's weird but since the weekend I've felt a lot of fatigue as well - I think part of that is because my hemoglobin is down for the first time in 2 years and combined with my low white and blood count plus iron deficiency I think it's taken it's toll.

A giant sleepover sounds good!

Take care.

C
xxxx

angee
Member

Re: so so tired

Hello all,

I am SO tired ALL the time that I hardly have time to appreciate what a fashionable disease I have but am getting Pink October fatigue along with it all. Haven't been on this site for months as things seem to have gone from bad to worse and am now back on chemo and I just sleep and sleep and sleep then watch a bit of telly, drink a build up drink (oh the irony....)

Caroline, you are sadly not alone.... Perhaps we should all have a giant sleepover.

Angee xxx

JaneRA
Member

Re: so so tired

I have taxol on Wednesday....feel great on Weds, Thursday, Friday.Generally go down badly on Sunday (sometimes Saturday), grotty on Monday, bit better Tuesday, back on Wednesday...except my off week I felt tired all weeek...and you should hear my voice today!

But mustn't grumble...people are having such a great time with secondaries these days...grrrh....taking myself off for capuuccinno and pannini.

Jane x

LottieLemon
Member

Re: so so tired

Me too, me too. I get tired walking any distance, and spend most of the morning in bed! I do liven up a bit p.m. but I am becoming a bit of a 'home bird' and just enjoy mooching around.

Lottie

KatieP
Member

Re: so so tired

Hi Jane
What day do you have Taxol, I agree that tiredness and generally feeling grotty are awful. I hate having to think if I have the energy to do something. Also with the voice, mine is definitely weaker and I am very breathless, keep having to pause to talk.
Best Wishes Kathryn

ForumMember
Member

Re: so so tired

I'm also feeling underpowered/fatigued at the moment and I think it's probably to do with the chemo as well plus my bloods have been the lowest they've been for the past 2 years that I've been on chemo.

I get a shower and then feel totally shattered. I have a feeling it might be that I need a blood transfusion so will see what my blood results are like the next time I go.

I agree with Jane that fatigue doesn't seem to be that well researched and people who haven't had it don't really understand what it's like.

I think though Jane that it's good that us with advanced cancer are having a voice but it also needs to be placed in reality

JaneRA
Member

Re: so so tired

Caroline

I'm so tired of being tired. I am on weekly taxol ...completely knocked out for 2 days each week on it, and a third day (happens to be today) is pretty dodgy. 'Fatigiue' has always been my worse chemo side effect and it has taken over sometimes when I've not been on it.

I get really down and depressed when I'm tired...feel so hopeless when I can't DO anything but lie dow.

I think fatique is incredibly under researched and misunderstood and is one of the hardest things about living with secondary cancer. Feeling bitter and grumpy having just looked at happy youthful photos of women the Daily Mail with secondaries...when I look in the moirror I see ageing grey skin, a wonky eye and can't even talk properly...moan, moan, moan....pink October seems ot be turning living with secondaries into the new must have disease..grrhhh

thinking of you

Jane

Jennywren
Member

Re: so so tired

Hope you are soon feeling better, Caroline. I would just like to add that I don't think this time of year helps anyone's energy levels - let alone those in our sort of position! Try and be easy on yourself. The darker evenings and earlier mornings really take it out of you. (Hmm... maybe I should practice what I preach... definitely needed match sticks all day yesterday and even tried to go back to sleep after dropping children off at school - but couldn't).

Jenny
x

KatieP
Member

Re: so so tired

Hi Caroline
Sorry to hear that you are not feeling too good. I just find that I have to take things a bit slower now which I find frustrating but if I overdo it I am poleaxed.Hope the bloodtests clarify things
Best Wishes
Kathryn

ForumMember
Member

Re: so so tired

thanks Dawn & Cathy It could well be that I have been over doing things a bit lately. The trouble is my normal isn't what it used to be. Cathy I take Ametrypteline if thats what you mean and I do get a really good nights sleep on them, so its not that I am not sleeping properly.

I think I need to take things at a slower pace than I used to, the trouble is I have 3 children and a business to run (which is very quiet at the moment).

Caroline

KatherineM
Member

Re: so so tired

Hi Caroline

Sorry you are feeling tired

,I am working on getting better sleep as I now have the amyl something tablets in 10 mg. I think that your GP is doing the right thing running the blood tests and having a look at those....if anything comes up in those they can look at doing something else....it could just be that you are run down and have a virus - I think we are more susceptible to that anyway, when I had my chemo break I was tired pretty much all the time but I put that down to the after effects of the chemo and my silly job!

I hope you get the results back soon and that there is no reason for any further concern....

Cathyx

dm1968
Member

Re: so so tired

Hi Caroline

Sorry to hear you not feeling great, but if it is any help, I am permanently exhausted, obviously some of mine is down to my little ones, but I do think it is the ongoing treatment, and it is taking its toll a little.

Sorry not much use really, but u are not alone.

Take care and lots of love
Dawn
xx

ForumMember
Member

so so tired

I was just wondering if anyone else has felt like this. I have secondaries to liver lung and lymph glands. I had chemo last year which did wonders and I have been feeling really well.
This last week I feel like I did when I was having chemo. I feel like I could sleep all day. I have moments when I think if I shut my eyes I will go to sleep.

I had a cold a couple of weeks a go which seemed to go quite quickly but I am beginning to wonder If things have started moving again.

I have spoken to GP today as I had to go for my Zoladex jab he is doing a blood test to check my liver function and blood count, but as I am due a scan next month he is not going arrange a chest xray at the moment.

Just wondered if any of you other lovely ladies have felt like this when not on chemo
Caroline