Bit of a wobble. : Hi lovely ladies. I’m... - My Ovacome

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Bit of a wobble.

Suzanne333 profile image
92 Replies

Hi lovely ladies.

I’m wobbling. A bit. Had chemo last week on Thursday. Same regime as first line - carbo and taxol. Don’t feel too bad physically but feeling a bit low. I think reading the word ‘palliative ‘ on my consent form just got to me. Scared me. I know I can’t be cured but this word made me think horrible things. I mustn’t think like that but it’s hard not to sometimes.

Quick question. I’m constipated. My tummy hurts. Any recommendations for a good laxative? Prefer a liquid type. Had those tablet things before and they made me run. Don’t have the energy for running.

Thank you lovely ladies. Hugs to all. XXXxxx

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Lily-Anne profile image
Lily-Anne

I had mine on Wednesday so a day ahead. I take movicol each day from day one to five. It’s easy to use so great when you’re feeling low

Try not to get too hung up on terminology they don’t have a crystal Ball. It’s just a generic term for managing disease which can still go to sleep on its own

I get quite down after chemo but know it’ll pass. It’s just like the hormone fireworks have to do their thing

Chin up

LA xx

Suzanne333 profile image
Suzanne333 in reply to Lily-Anne

Hi Lily.

Thank you for your reply. Your answer made me feel better. I think the chemo just drags me down. Can’t think positively. I’m going to go and buy some of that stuff.

I hope everything is going ok with you. Xxxxxx

Sh-x profile image
Sh-x

I take ducosate sodium, it's a stool softener so not overly strong. Got it after my op and does the trick.

Sometimes it just takes a little thing to go wrong and we focus on all the big things we have to deal with.

I think they say sort the wee stuff and the big stuff will take care of itself. I just concentrate on what's in front of me right now and forget about the rest.

Shona

Suzanne333 profile image
Suzanne333 in reply to Sh-x

Hi Shona.

Thank you for your reply. Yes I think I will not sweat the small stuff. It’s hard sometimes. I’m sure I will soon be back to my usual self. I’m off my food a bit so that doesn’t help my mood.

I hope everything is ok with you. Xxx

Yoshbosh profile image
Yoshbosh

I also took movicol first time round, normally for about 5 days. I’ve only had one sachet so far this time and haven’t struggled yet (phew!). Nothing more miserable than constipation 😕

I also know what you mean about ‘palliative’ as a term, but it really means managing the symptoms so that you can have a great life. I was gutted to receive a recent letter telling me my OC was ‘incurable’ but how do the doctors know? I know history and trends will give them an idea of what is going to happen, but we’re all individuals. One of my friends said to think of it not that the cancer has come back, but rather it didn’t quite all go away last time, so maybe this round of chemo will do the trick. I know that’s optimistic, but why not?!

Vicki xx

Suzanne333 profile image
Suzanne333 in reply to Yoshbosh

Hi Vicki.

Thank you for your reply. It did cheer me up. You’re right, what do they know. I hope to get a longer remission this time. I must look at it as a chronic illness. I’m living with it.

I don’t know why I wasn’t given any laxatives at the hospital. I’ll go and buy some today. I need to get out for a walk. Staying in doesnt help my mood.

I hope you are doing ok Vicki.

Big hugs to you. Xxxxx

Yoshbosh profile image
Yoshbosh in reply to Suzanne333

I’m not feeling too bad. Had a couple of grotty days after chemo, but feel relatively ok today. Would be great to think each round will play out like this, but we’ll see how it goes!

Suzanne333 profile image
Suzanne333 in reply to Yoshbosh

Hi

Yes. I know what you mean. I feel a bit better today than I did yesterday. Next round might be different. Might be better?

Guess we’ve just got to go with it.

Xxxxx

in reply to Yoshbosh

it is considered incurable because it came back, meaning there's nothing invented in this world that will kill it. but we all know cancer isn't really curable. it is chronic condition and we live with it until the end. when this 'end' comes - nobody knows.

Yoshbosh profile image
Yoshbosh in reply to

Yes, I know. Just seeing it in black and white was a bit depressing!

in reply to Yoshbosh

It sounds worse that it is. I guess such harsh terminology comes from death rate of ovcs but it doesnt mean its terminal.

Think of it as a chronic condition...like blood pressure, it can kill too if not managed. A lot of it is brain games and thats one most important thing that you should keep under control and happy

Kx

Suzanne333 profile image
Suzanne333 in reply to

Hi and thank you for your reply. People do die from it but people die of lots of things if left untreated. You are right.

I’m trying to be positive now. Xxxx

Hi Szanne, sorry you are feeling down but it's understandable,Please do not get yourself scared about palliative, care as we know this can a good thing it help you manage pain and gives you the support when you need it.

As for the constipation I'm having a lot of constipation badly with this on Caelyx, so I take Movicol power you just mix it in juice or water 1 sachet a day or you can 2 or 3 over the day if you need to. I also take Coloxyl tablets it's a softener and a laxative you take one or more at night I take 4 and still do not have to run.

on top of all this I drink a good glass of prune juice. I have to keep on top of the constipation as I did have a bowel obstruction and ended in hospital not good.

Hope all goes well, do use your palliative care support team.

Take care ..Lorraine xx cheer up🎉🎉

Suzanne333 profile image
Suzanne333 in reply to lorraine71-Australia

Hi Lorraine.

Thank you for your message. I will get some of that movicol. I like prunes so will get some of those too.

The word palliative scares me. Makes me think terminal but I know it doesn’t have to mean that. The chemo sends my mood real low and it’s hard to think positive but I’ll soon be back to my positive self I hope.

I hope everything is ok with you. My friend is on caelyx and carbo. She’s finding it a little tough.

Big hugs to you. Xxxxx

lorraine71-Australia profile image
lorraine71-Australia in reply to Suzanne333

You will be ok. The carbo/carelyx is working well for me ..Lorraine

Suzanne333 profile image
Suzanne333 in reply to lorraine71-Australia

That’s brilliant that it’s working. Xxxxx

Zena41 profile image
Zena41 in reply to Suzanne333

Hi Hun chemo sent me like this the first week but second week I was bak.

And what I used to do sounds silly but helped me on my good days took pics of what I did with Ellie on my next round of chemo I looked at them to tell me I can do this and came out the other side hugs xx

Suzanne333 profile image
Suzanne333 in reply to Zena41

Hi Zena.

That’s a good idea. I need to do something like that so I know I’ll get over it and will have times of feeling ok. Wishing you well. Hugs. Xxx

Zena41 profile image
Zena41 in reply to Suzanne333

Yes took me away from the dark side. And listening to music. X

dmr24 profile image
dmr24

I have Found Laxido very gentle but effective. It comes in powder form, mix with water and take before going to bed. Does the trick for me. I got mine from my GP.Take care of yourself one day at a time, you can do it. Sitting in the airport on my way to see my grandson of 5 months, going to cuddle him for a week😍🤗😂

Onwards💪 Love Dil x

Suzanne333 profile image
Suzanne333 in reply to dmr24

Hi Dil

Thank you for the tip.

Aww I hope you have a lovely time with your Grandson. Loads of hugs for him. Enjoy. Xxxxx

all laxatives work in different way, you are lucky if you don't know all of them by now!

some you take always, some in emergency.

ducosate sodium is for daily use, regardless of how you go, runny, soft or hard. it should be taken every day. it worked on me very well.

laxido is meant to 'flush' things and I wouldn't call is 'soft' by any means. it made me bloated like a balloon and painful so much my private oncologist spent 40 min on the phone with me talking about my poos!! laxido only worked after 4th sachet only (which is a lot apparently!)

by the way if you go 'runny' it doesn't mean you don't have constipation. if still in pain and bloated/feeling sick, it can be early signs of blockage. and runny poo is called overflow.

and it's not hormonal fireworks but steroids and pre-meds that make us constipated plus chemo kills all good bacteria and changes ALL bacteria in out digestive systems so better watch out for 'good' fibre like in apples.

if you have weird problems with some foods, speak with MacMillan dietician about FODMAPs

K

Janet235 profile image
Janet235

I know how you feel.... my thoughts are already turning to beyond Christmas by which time I I will have finished this current round of weekly taxol. ( doing its job nicely at the moment ☺️

For me will be 18 months since this OC circus began, but each time I have not had a long remission before it all starts looming again. I know there are other options but ... always the big BUT!

As for constipation my go to daily is one docusate sodium, and two on the days around treatment, steroids are the culprit I think.

No need to buy anything... think what's going on and ask doctor to prescribe. My stomach gets quite sore as well so I find lansoprozole helpful which is taken about an hour before breakfast and steroids. Also prescribed!

However you probably need anti constipation NOW 😳. Parmicist will advise. -forget to drink a LOT. I drink a fizzy fit C tab in a glass of water daily as well... yes most of it flushes away ( interesting tangerine pee...) but at least it's going through your system.

Break that duck!🦆

Yes and read 'palliative' as on going maintenance. I learnt that one early on. Things to do , places to go , friends and family to hug 🌈🌈🌈 janet x

Suzanne333 profile image
Suzanne333 in reply to Janet235

Hi

Thank you for your reply. It made me feel better. Especially the palliative bit.

I hope you are doing ok with this awful disease. It is like a circus.

Big hugs. Xxxx

January-2016-UK profile image
January-2016-UK

I think it's just terminology; my consent from for weekly taxol says, "to prolong life" which is ok by me.

I have not yet had any diarrhoea or constipation with this routine although I've only had two, third one today. I only had diarrhoea with the first carbo/taxol and since diagnosis the only constipation I've ever had was after my operation. Of course the stuff the hospital were giving me for it, decided to work with a vengeance on the day I was going home. A two-and-a-half hour journey. And, I've only just remembered this, the hospital gave me some huge white nappy-type knickers, oh was I glad to ditch those... And those ugly socks....

We're all different, my digestive system seems to cope well with the chemo but regrettably not my hands and feet.

Fingers crossed you find something that suits your body.

Suzanne333 profile image
Suzanne333 in reply to January-2016-UK

Hi and thank you for your reply. Your big white nappy knickers made me laugh.

I hope you are doing ok. Xxxx

Luchie profile image
Luchie

hi sorry your feeling a bit down. If you feel a bit wobbly, maybe it's the coming off steroids after the chemo. In my experienced, I felt wobbly on my 4th-7th day post chemo, it's when I finished the steroids, but I saw a prof. in oncology and he prescribed the steroids to finish gradually so I don't have the sudden effect of the withdrawal symptoms from it. It did the trick for me, because they normally gives me high dosed of steroids for 2 days and low dose on the last day but the last chemo I had they gave it to me for 5 days gradually and it did the trick! Just a thought,if you like to try and ask your doctor next time. With the constipation, I normally take lactulose as its a softener and works for me, I take it every night before bedtime, but not a lot of people can tolerate it as its so sweet and like drinking syrup. I hope you feel better soon. Xxx

Suzanne333 profile image
Suzanne333 in reply to Luchie

Hi

Yes I think it might be because of the steroids stopping. I get steroids intravenously then just four tablets a day for two days. Then nothing. Felt so low last night. Kept crying. Mood is improving a bit now.

I will try that laxative. I’m sure I had that last year but it would be out of date by now. Xxxx

kat98116 profile image
kat98116 in reply to Suzanne333

Suzanne, I had the exact same thing early on in my treatment. Yes, it was the quick stop of the steroids that was causing me to "crash." My oncologist now prescribes what he calls a "dose pack" of prednisone after the second day. It lets me down more gradually. It starts with six 4 mg. pills a day and then decreases every day. Maybe it could help you. Best from Kathy in Seattle USA.

Suzanne333 profile image
Suzanne333 in reply to kat98116

Hi Kathy

Thank you for your message. I will ask my doctor about that when I next see him. That sounds a good idea. Xxxx

Vanessa9233 profile image
Vanessa9233

Morning Suzanne, stay strong 💪 and concentrate on all the success stories on here 😊 I use movicol, brilliant stuff xx

Suzanne333 profile image
Suzanne333 in reply to Vanessa9233

Hi Vanessa.

Thank you. I will stay strong. Sometimes I just can’t believe I’m back on the chemo again only 8 months since the last lot. I will keep positive though. Hugs xxx

Katmal-UK profile image
Katmal-UK

Sending you a big hug Suzanne. Can't help with the laxative issue I'm afraid but can understand your low feelings but as LA says, they don't have a crystal ball. Look at me 'the prognosis is not good, you have about 2 years'. Obviously they got that wrong ! xxx

Suzanne333 profile image
Suzanne333 in reply to Katmal-UK

Hi Katmal.

I always think of your story when I feel down. You’re here ten years after being told two years. You’re doing brilliantly.

Big hugs. Xxxx

Katmal-UK profile image
Katmal-UK in reply to Suzanne333

And....... there is no reason that can't be you! xx

Suzanne333 profile image
Suzanne333 in reply to Katmal-UK

Aww. Thank you. I’m definitely going to try.

Hugs. Xxx

Caleda4 profile image
Caleda4

Hello Suzanne, I am so sorry that you are feeling down,but understandable though. I think when people mention palliative care we tend to think end of the road,but that is not the case of course & if necessary you can get help from a hospice for pain relief.

onto the bowels now,i was given laxido by my Oncologist & found that it did actually work for me. Fortunately I did not need to take them everyday, & now take none at all. You probably need to drink more water which helps,i know this is not easy though. I do hope that you feel better as feeling down is not good.

Take care, Love Georgettexxx

Suzanne333 profile image
Suzanne333 in reply to Caleda4

Hi Georgette.

Thank you for your message. Yes the word palliative is scary. Makes me think terminal. Life is terminal for everyone though I guess. I’ll try and look at it differently.

I’m drinking lots of water but not eating too well. Not got much of an appetite. Going to head out for a walk soon. That might help with everything.

Hope you are doing ok.

Hugs. Xxxx

Caleda4 profile image
Caleda4 in reply to Suzanne333

Hi, I hope that the walk will make you feel better Suzanne. It is hard when you don't have much of an appetite you sort of need something to tempt you.

Thanks for asking, thankfully I am fine at the moment.

Love Georgette xx

Suzanne333 profile image
Suzanne333 in reply to Caleda4

Hi Georgette.

I went for a walk. Lasted five minutes. Needed to sit down and felt shaky. Got the movicol though. My other half had to come and get me. I feel like a wimp. Lol.

I’m glad you are doing ok. Xxxxx

Purple_k_in_Oz profile image
Purple_k_in_Oz

Hi Suzanne 💜 I’m a bit of a lurker on this site. So many words of wisdom said so beautifully and more articulate than my waffling. But.... I did just want to say hello and that I’m sorry you’re feeling low. Plus I feel I can add my 2 cents here, lols

I’m a children’s nurse and I was interested to learn from one of our hospital palliative care nurses that fairly recently the nursing/medical profession has started trying to revise people’s understanding of palliative care. Usually when people hear or read that term they immediately think “death is on the horizon”. Our palliative care team say their role is more akin to care coordination and ensuring the most effective symptom management when caring for somebody who has a life limiting medical condition. The push in our hospital is to refer to the team early rather than late. For example, a child who has a degenerative neurological disorder which they will likely die from but not necessary today, next month or even next year will be referred to palliative care at diagnosis so the pall. care team can coordinate their treatments, care and symptom management. It might sound like semantics but it really made sense to me when it was explained. Families say having a team over-seeing their child’s comfort makes a positive difference to their lives.

As for the constipation, I rate movicol sachets. I make up a few at a time in a jug and store it in the fridge. It tastes ok but much more palatable when cold and because it’s already prepared you can grab and go (literally)!

Sending love xxx Kirsty

Suzanne333 profile image
Suzanne333 in reply to Purple_k_in_Oz

Hi Kirsty.

Thank you for your reply and explaining palliative in more detail to me. Just sounds so scary. There’s so many different descriptions for it on the internet. I shouldn’t google things.

You have made me see it in a different way though. I feel sad that no cure is possible. I guess we can live with illnesses though. Many people do.

Thank you for the tip about the movicol. I think I will get some. Another laxative has been recommended but it sounds too sweet and sickly. I don’t have a sweet tooth.

Thank you again for your message.

I hope you are doing ok.

Xxxxxxx

Purple_k_in_Oz profile image
Purple_k_in_Oz in reply to Suzanne333

I can only imagine how sad you must feel. This cancer business is just rubbish. Your positivity and support on this forum helps people immeasurably. Even your heading “a bit of a wobble” is so selfless and understated. Wobble away I say! I’ve got very little to worry about yet I feel like a jelly that never sets!

I often think of people with e.g. MS or a seizure disorder, which are incurable and admire how they carry on with this black cloud hovering above them. Such resilience!

Avoid lactulose at all costs, that’s one of the sweet, sticky ones. I’d rather extract my own teeth with a spoon than drink that again. Ever.

Xxx

Suzanne333 profile image
Suzanne333 in reply to Purple_k_in_Oz

I’ll avoid lactulose. Lol. It’d probably make me throw up.

Yes there are so many awful diseases and illnesses about. My poor Aunt has MS. Her husband looks after her and he doesn’t have the greatest of health.

I keep very positive most of the time. I even joke when I shouldn’t. It’s my way of dealing with things.

I thought it funny when they said it had recurred not only in my abdomen but in my shoulder too. How did it get there? Could only happen to me. Still makes me chuckle.

Just got to carry on and live. Xxxx

Purple_k_in_Oz profile image
Purple_k_in_Oz in reply to Suzanne333

As long as you don’t “ovary-act” to every little thing.... xxx

Suzanne333 profile image
Suzanne333 in reply to Purple_k_in_Oz

😂😂😂xxxx

Luchie profile image
Luchie in reply to Purple_k_in_Oz

It's really funny how people reacts to medication, I agree with the lactulose being so sickly sweet, but at the moment it's the only one that's works for me, so have to hold my breath for a few seconds to take it.😔

Purple_k_in_Oz profile image
Purple_k_in_Oz in reply to Luchie

Totally!!! I had to have it in hospital and would hold my nose and try to pretend it was a vodka shot. Lols. Glad it works for you!

caf132 profile image
caf132

Hey Suzanne-

hang in there girl! Pallative is there bc they know how to deal with all the side effects, pain, constipation, etc.better that the docs do. they are easier to get a hold of than the docs.

Stay on top of the constipation!!! I had a horrible time of it while on chemo. I thought I was going to die!!! Laid on floor crying I was so plugged up. Wish someone had told me in the beginning about this. You do not want a blockage on top of everything else.

This maybe the chemo that will work for you. Stay positive so you and chemo can fight as one. Drink a lot of fluids and rest. your remission may be right around the corner.

Hugs, Carol

Suzanne333 profile image
Suzanne333 in reply to caf132

Hi Carol.

Thank you for your message. It made me feel more positive. I’m going out now to get some movicol. Get things moving.

I hope everything is good with you. Xxx

CALENA profile image
CALENA in reply to caf132

TELL me about blockage. I had that after being depressed and binging on peanut M&Ms and a vegan turkey dinner (very compacted bread and soy) - Not on the same day... LOL - The doc said it was "adhesions" no one mentioned that it was a possibility but maybe it was in the paperwork. Anyhow, I was in the hospital for that longer than after my debulking surgery. My local hospital was awful, they moved me three times to different rooms, kept pumping me full of saline solution and wondered why my BP was 200/100 (plus a wicked headache), put me in a room with a heart monitor. The happiest day was when I broke wind and they took the NG tube out of my nose. I was happy to use their "nappies."

ZenaJ profile image
ZenaJ

Hi Suzanne, sorry to hear your news. Because of my bowel damage I need to 'go' every day and as a once every couple of weeks person I had to take stuff. I was offered liquid but I needed more control. I now take 2 ducusate and 2 senna every day. I'm allowed up to 4 of each a day but through experimenting I find 2 of each works well. If I need to 'go' when I'm out I've got plenty of time and control to get home or find a toilet without worrying. I also use a suppository occasionally and never go on holiday without at least one. Make sure you drink plenty of water as well.

Hope you find something to suit you. We never hide away from uncomfortable subjects here. There won't be much soon that everyone doesn't know about me.

Best wishes with it. Let us know how you get on. It's like having a baby. You can't wait for the delivery. xxx

Suzanne333 profile image
Suzanne333 in reply to ZenaJ

Hi Zena. Aww you have to take a few things but as long as it does the trick.

I just got back from town. I bought some movicol. I’m hoping that will help. I felt rough in town. Was only there ten minutes then my partner had to come and get me. I’m resting now.

Might have a nap.

Big hugs to you. Xxxx

ZenaJ profile image
ZenaJ in reply to Suzanne333

Oh no, hope you're feeling better now. Constipation makes you feel ill. It makes you tired and I get head aches. It's not good so I do hope the movicol does the trick. xxx

Suzanne333 profile image
Suzanne333 in reply to ZenaJ

Hi Zena.

I went this morning. Lol. Still got a bit of a headache. Am going to have a nice bath with Epsom salts.

I hope you are ok. Xxx

ZenaJ profile image
ZenaJ in reply to Suzanne333

What a relief, in more ways than one. Keep it going. All okay here, Suzanne, Best wishes, Zena xxx

Maxjor profile image
Maxjor

Hi Suzanne---I started chemo again too (this time, Carbo/Doxil) and had the worst nausea-today is the 4th day after and finally the anti nauseant pills are working better. But like you, it got me so down. Is this it? Will I always have to go through 4 days of feeling so sick if treated? I know its hard to think positively or clearly when feeling down, and I am saying to you what I need to say to myself--but it will pass and when feeling better, it all seems better. Do the countdown of treatments till remission again and fingers crossed for a much longer one if it returns at all.

One thing with the nausea was I found it hard to eat. Then I worry about the constipation we are so heavily warned about that I don't know if I should take anything or not. I use Mirilax, which is a powder and in any drink---and I have put it in water, Gatorade, etc. My favorite drink with it is 3/4 water, 1/4 Smart Water (which has oodles of vitamins) and the capful of Mirilax. Works like a charm and easy on the system (no cramps or bloated feeling). Can you get that there? I will mail you some if not!!!! oxox Judy

Suzanne333 profile image
Suzanne333 in reply to Maxjor

Hi Judy.

Thank you for your reply. It’s a horrible feeling. I don’t have nausea but did gag when I had an awful metallic taste in my mouth.

I just went into town and bought some movicol. I’ll let you know if that does the trick.

I guess we just have to get through this rough time and like you say, hope for a long remission next time.

Stay positive.

Big hugs. Xxxx

CALENA profile image
CALENA

Suzanne - I know what you mean about the word "pallative" - it's on my report also when I went back for my recurrence in July. Here, I thought I was cured after 7 rounds of carbo/taxol and optimal debulking surgery. But this horrid cancer has a mind of it's own. I'm undergoing now carbo and gemzar on day one and gemzar on day 15, two weeks off and then back again for a total of 6 "rounds". Doc said "we don't know" etc, blah blah..... I sought a second opinion and was given a bit more optimistic report from two excellent doctors. I am not giving up and you shouldn't either. I'm 66 and at the bad age for ovarian cancer (and primary peritoneal which I also have). Which came first the chicken or the egg? Don't know. I too get very constipated after my doses and use "Milk of Magnesia" type of laxative then after a few days switch to the softner. I think the constipation makes me more miserable than anything (plus it gives me throbbing headaches) I walk a LOT and drink tons of water but mostly the laxative helps. When I told my now former primary care doctor about headaches and constipation, he made a joke about it. But for me it's real. That office also said "lets watch it" when I went to them for my first signs of cancer (pain around bladder first thing in the morning).

I now have my calendar set up with chemo dates and when I won't be able to do anything except stay home. Luckily I have a small TV in my bathroom so it helps passes the time.... no pun intended. Stay strong lovely lady.

Suzanne333 profile image
Suzanne333 in reply to CALENA

Hi and thank you for your reply. I was told on diagnosis last year that it’s not curable. Then when I had acrecurrence this year the consultant basically said there’s no way we can cure it now. I didn’t think they could anyway. It’s just the palliative word. Makes me feel unnerved but I must learn to see it in a different way.

I too get headaches. I think that’s probably the constipation causing it.

A TV in the bathroom is a good idea. I’d be watching it all day - and night. Lol.

I hope you are doing ok. Thank you again for your message. Xxxxx

harpist_UK profile image
harpist_UK

Sometimes it helps to switch off from the terminology. I've been told 'incurable' quite a few times but my brain doesn't want to accept that word. I'm a bit of a Dory on that. Who? Me? Did someone say incurable? The derivation of the word 'palliative' is to cover or cloak something, so I try to just cover it up. Just my way. Don't like it though ...

Movicol was part of my chemo regime.

Here's to a long remission.

Suzanne333 profile image
Suzanne333 in reply to harpist_UK

Hi there.

I guess life is incurable. We’ve just got to keep going. Keep knocking back the gremlin. Bloody thing.

Going to have movicol soon. Lol

Xxxx

harpist_UK profile image
harpist_UK in reply to Suzanne333

Always remember the motto 'be kind to yourself' :)

rppizio profile image
rppizio

Suzanne, All of this is totally understandable. It's the highs and lows of this disease. I have looked up several meanings of this term several times and it is NOT another word in place of hospice. It has its own purpose of treating the disease. Sometimes we hear that our cancer is chronic and is treated as such.

Palliative care is a multidisciplinary approach ( encompassing the whole body, mind, physical & family along with curative treatment) It focuses on providing people with relief from the symptoms, pain, physical stress, and mental stress of the chronic diagnosis.

In the past patients felt like they were only being treated for the illness and not all the other stuff that goes with it. I hope your team addresses your needs as the beautiful human being and lady that you are.

In a small way this forum is part of all of our palliative care as well. IT addresses our concerns and gives support to each of us when we are searching for answers to best support our care with this disease. They are just adding more of the Medical asspects of it as well.

Hope you day gets a bit brighter and the wobbles fade for a little bit.

Suzanne333 profile image
Suzanne333 in reply to rppizio

Hi there.

You are so right about this forum being part of our care. I don’t know what I’d do without all the support and knowledge from all you lovely ladies. I always feel better when I’ve been on here. I don’t feel so alone either.

I hope all is good with you and you are doing ok.

Big hugs xxxx

Zena41 profile image
Zena41

Movical Hun x

GoldenGourd profile image
GoldenGourd

Hi Suzanne. I’m a bit of a lurker here these days, checking in intermittently.

I’ve always been given to understand that I was a palliative rather than curable case and the previous hospital I was with were really quite negative when I look back on it now. My new hospital are so so much more positive - they still use the same terminology but it’s the way they deal with it - saying it is akin to managing diabetes or arthritis, keeping a regular eye on the best way to treat you and changing approach as circumstances change. I hope you can see it like this as I found it helpful... I also have found that sometimes it is important to “hold”the feelings you have and just see them as a temporary state which you can get through.

As for constipation my failsafe is liquorice- every day. Works for me without fail and is gentle but effective. The more plain type rather than Bertie Bassett...

I hope you start to feel a little better soon and wish you all the very best

Xxx Netti

Suzanne333 profile image
Suzanne333 in reply to GoldenGourd

Hi Netti

Thank you for your message and I particularly liked the bit about our illness being likened to arthritis or diabetes. They’re not curable either. I suppose we just take the treatment that’s needed when it’s needed. I’m feeling a bit low and shaky but I will get through it. I did before and I will again.

I hope you are ok. I love liquorice so will be having some of that.

Hugs. Xxxx

GoldenGourd profile image
GoldenGourd in reply to Suzanne333

There is always someone here Suzanne. Take care and good luck with the liquorice 👍 hugs back !

X Netti xxx

ShropshireJo profile image
ShropshireJo

Hi Suzanne. Have read all the helpful, positive empathetic comments you’ve had. We are so lucky to live in an age where we can share our thoughts and fears and seek advice in such a simple quick way. It makes me feel so much less alone on this bloody “journey”. Anyway, the only thing I wanted to say was: Don’t be hard on yourself and listen to your body when it says it’s tired. Rest is so important. Oh yes and: Movicol, sennakot and loads of water. All the best Jo 🌺🌼🌹🌸

Suzanne333 profile image
Suzanne333 in reply to ShropshireJo

Hi Jo.

Thank you. You are right. I don’t know what I’d do without all the support on here. It helps so much and does make you feel less lonely. Keeps me sane.

I hope everything is ok with you. Xxxxx

Lorent profile image
Lorent

Hi Suzanne, sorry you are feeling down , you are always so positive, you will get past this you are such a strong lady..... Wishing you well.

Loren x

Suzanne333 profile image
Suzanne333 in reply to Lorent

Hi Loren.

Thank you. Yes I’m usually very strong and positive. I think chemo just whacks me physically and mentally. I’ll fight back though. 👍🏻👍🏻

I hope all is good with you. Xxxxx

Hi Suzanne.

Like the ladies have said palliative is just a term for another support system. The palliative doctor came to me in the hospital 2 weeks ago to discuss different pain meds and prescribed Targin which has an anti constipation component ( or so he told me- I haven't notice any difference!) We got chatting and he remarked that the word palliative scares people away and then told me about all the different services offered- it's quite holistic, so try to forget the label!

I'm constantly being told to try to ensure that my bowels work so I take duphulac and dioctly daily - it keeps me somewhat regular.

Best wishes

Juliet x

Suzanne333 profile image
Suzanne333 in reply to

Hi Juliet.

Thank you for your message. Yes I’m going to look st palliative in a different way. Always made me think terminal. I’m now going to look at it as a form of care and medicine for a chronic illness.

I hope everything is good with you xxxx

Katsmum profile image
Katsmum

Hi Suzanne, sorry to hear you are feeling low at the moment but I guess every one of us has felt similar at some stage. It will pass and you will feel more positive especially when the constipation is sorted as that can contribute to a low mood. As others have recommended go for a softener ( movicol, laxido or sodium docusate) as they work well but not too ferociously. Rrpizio explains that palliative terminology beautifully and that saying ‘we are all going to die, just not today!’ , is equally true for everyone.

Hope you are on the up and up and things are moving for you. Sending hugs, love and best wishes

Jane x

Suzanne333 profile image
Suzanne333 in reply to Katsmum

Hi Jane.

Thank you for your message. Yes I guess we are all on the terminal train I just feel like my carriage is nearer the front - but I’m starting to think that’s not necessarily so.

I’m feeling a little better today. Constipation has cured itself. Didn’t even take the movicol I bought. I might take one though, to keep things moving.

I know I’ll feel better mentally when I have more energy.

I hope everything is good with you. Xxxxx

Kryssy profile image
Kryssy

Hi Suzanne

Oh, the poo word. Never have I talked so much sh** in my entire life. I even describe my evacuations to hubby, usually at mealtimes. Gone is, "I love you" and has been replaced with, "I've been!" I have tried all the potions but they made me sick. Liquid parafin leaked out of my rear end the same colour it went in - shocking pink. So once a week I do a colon cleanse with Oxy Powder, making sure I stay home the next morning. Everything turns to liquid and there's no pain. I always feel rejuvenated afterwards and my skin looks better for a while. Have used it for years when the going gets tough. It's not cheap but I hunt for the best value and make sure it's the genuine Oxy Powder.

The girls have given you some great advice about terminology. Words cannot harm you but worry and feeling low can. I have MS, Lymes Desease a brain tumour and stage 4B cancer. Any one of these can finish me off and something will in the end - for everyone. Dying is the easy part, we just go to sleep. The hard part is leaving our loved ones knowing how sad they will be. But embrace every day that you are alive and don't worry about the future. If you think ahead about what might happen then you will miss out on the now. End of sermon.

Love and courage to you Suzanne. Look out of the window and feel happy that it is another good day. I've got sunshine. Hope you have too.

Big hugs Kryssy xxx

Suzanne333 profile image
Suzanne333 in reply to Kryssy

H Kryssy.

Thank you for your lovely message. It made so much sense. I’m so sorry you are going through so much. How do you keep so strong? You’re amazing.

I’ve not heard of oxy powder. Sounds like something you’d wash your clothes in. Certainly sounds like it can clean you out.

I bought some movicol yesterday. Not used it yet but not had to now. Typical. I went this morning. Hopefully now I’ll keep going. Regularly rather than continuously.

Again, a big thank you for your lovely message.

Keep strong and positive. Xxxxxx

Kryssy profile image
Kryssy in reply to Suzanne333

Hi again Suzanne. I'm glad my message gave you a lift. I never let anything get me down as I'm a half glass full sort of person. I always say that I can turn on a tap for water if I'm thirsty and not walk 10km a day to get disease infested water. That'll do me. I meant to say that most days I have half a glass of very warm prune juice with my breakfast. That usually does the trick. Doc says no medications for me as my body doesn't like them - not the legal sort anyway. I just have chemo. That's enough toxins for me.

Stay well and use every day to the full. I'm just waiting for a friend to pick me up and we are off to the Red Cross charity shop in my local town (France doesn't have charity shops like UK unfortunately) then it's a coffee and a blether and this afternoon I shall put my feet up outside and watch hubby doing some DIY. My day is complete. Small things but good for the soul.

Love and hugs

Kryssy xxxx

Suzanne333 profile image
Suzanne333 in reply to Kryssy

Hi Kryssy

You definitely have the right attitude. We are still here so must live as we are here. Your day sounds enjoyable. I tried getting out yesterday but felt weak and shaky. I came home and watched tv and felt ok.

Small things are good for the soul. You are very inspirational. Many thanks and have a lovely day. Xxxxx

thomas62 profile image
thomas62

Hi Suzanne,

Haven't read all these posts yet. But just to say ask your doctor for a prescription for any laxatives you take as the cost mounts up over time. I take Movicol and Docusate daily.

Best wishes. Gwen xx

Suzanne333 profile image
Suzanne333 in reply to thomas62

Hi Gwen.

I should have asked for a prescription. I did buy some movicol but will get a prescription as I’m sure this will happen again.

I hope everything is good with you. Xxxx

Jessica-DianeB profile image
Jessica-DianeB

Sending virtual hugs Suzanne. It's ok to have a wobble, wouldn't be right if we didn't given our circumstances xxx

Suzanne333 profile image
Suzanne333 in reply to Jessica-DianeB

Thank you. That’s very true xxx

Eriksendi profile image
Eriksendi

I too had chemo last Thursday. #5 for me but first one since my big op. I sympathise with all your comments as I have been feeling very sick, unable to eat and very down too. I have a stoma - that blocked day 3 due to the chemo. Luckily the ducosate managed to clear it. However I am determined that today will be a better day!!! I hope that it is for you too x x

Suzanne333 profile image
Suzanne333 in reply to Eriksendi

Hi. I’m sorry you are feeling sickly and low. It’s horrid isn’t it. I’ve been through this before so I know it does get better. It’s just so hard sometimes. We have to deal with all the physical stuff but the psychological stuff is harder I think.

Hope you start to feel much much better.

Hugs xxxxx

Mumtazbegum profile image
Mumtazbegum

HI Suzanna. I manage with prune juice and drinking lots of water.Chemo day tomorrow.I seem to be having very loose motions at the moment so having carboplatin may stop that hopefully. Keep being positive and if palliative care is needed think of the positivety of it to manage your symptoms. Take care .xx

Suzanne333 profile image
Suzanne333 in reply to Mumtazbegum

Hi and thank you for your reply.

I like prunes so might start taking them. Maybe with custard.

Yes I’ve heard lots about palliative and it’s meaning. It doesn’t mean what it used to apparently. It’s used for control and shrinkage of cancer rather than to cure it.

I hope everything is good with you xxx

Jo-Jo1-UK profile image
Jo-Jo1-UK

Hi Suzanne...hope your feeling bit better after all the wonderful supportive comments you've had off the lovely ladies on here. Having an incurable illness is such a difficult thing to live and it's totally understandable to have a wobble every now and then. I really struggled with constipation whilst on chemo so can empathise. I couldn't recommend the meds I had as they didn't suit me! I hope you can find something that suits you. Best wishes with the rest of your treatment. Jo xx

Suzanne333 profile image
Suzanne333 in reply to Jo-Jo1-UK

Hi Jo.

Thank you for your message.

This site is wonderful. I don’t know what I’d do without it. There’s so much support from amazing women. It’s a club we don’t want to be in but thank goodness we all have each other.

I hope everything is good with you. Xxxxx

janmark43 profile image
janmark43

I find it is the ondasetron given to prevent sickness that causes diabolical constipation - I now take 10ml lactulose liquid the evening of treatment day and continue for a few days until I know all is well. The oncology unit should be able to supply you or something similar such as Movicol.

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