think I need some help!

[SamLee]

Kiwijan,

I know what you mean about some people working through. There was no way I could. Mind you I was having it every 2 weeks rather than 3 so I only had a few days where I felt sort of ok. I also work in London as a secretary and have a 1 hour commute each way. I went back to work in August last year having finished rads in June. I have just finished my 1 year of Herceptin and still get tired some weeks by Friday.

Sam

[kiwijan]

Thanks Sam and Herbi - I guess I'll just have to wait and see - and hope like hell its gets easier or at the very least no worse! I can't believe some people are able to work thru this journey - my commute into London takes about 1.5 hrs so there's no way I fancy doing that morning and night. I'm a secretary so although its not physical work I couldn't imagine anything worse - let alone the risk of infection when your nearing Nadir etc. I still feel nauseus most days so am definitely going to ask for different or better anti-sickness meds next time. Planning my vege plot at the moment - thats as close as I get to physical stuff apart from walking the dogs - its like spring here today - 18 degrees!!

Hope everyone are having good days!

Jan
X

[herbidacious1]

Hi all,
I,m having 6 TAC and have just had number 3. To be honest, I have felt like hell all the way through. I jihad a week or so of feeling good after round one but since number 2 it,s just been a slow grind of nausea and tiredness. I,m not saying this to worry anyone, I just think that sometimes we expect too much of ourselves. We here how others have sailed thru chemo, working all the way and expect the same thing but everyone is different,and you aren,t failing or letting the side down if you need to lie in bed for a few days. I was given Emmend for the second cycle and it made me feel worse! I have a five year old and it,s horrible to feel so I'll and feel like there,s things that need doing, but except help and be kind to yourself,
Herbi x

[SamLee]

Hi Kiwijan,

My first AC was by far the worst. I don't know whether it was the shock to the system or what. Or whether by the second I had got a handle on the side effects so had enough drugs to counteract them and could take them before they happened. My other bad side effect was a sore mouth and ulcers but this was made worse by the fact that I have a brace at the moment too.

For me the second set of Paclitaxol was worse as I was having it every 2 weeks and the big 3 hour bag, so I quickly lost all feeling in my finger ends and toes and the tiredness and weak muscles hit me like a brick. I also found I got more colds and infections. Mind you it was winter this time last year when it was thick of snow so obviously that didn't help. I would have quite happily had more AC by this time. But apparently the Taxol is better at shrinking tumours.

The numb fingers and toes were the worst, I did think at one time I wouldn't be able to go back to work as I wasn't able to type, but gradually from about a month after chemo finished in March last year to July feeling came back. My fingers are normal now and only slight tingling in my toes when it is really cold.

Hope this helps you.
Sam xx

[ChoccieMuffin]

Jan, for some it's worse, for some it's the same and for others it's better. There are no rules to this, which makes it even harder to deal with and plan for. For me FEC 5 was the worst by far, but it went in really quickly. 6 was better.

Edit: sorry, phone likes to stick in odd words here and there, so posts end up meaning absolutely nothing... odd words now removed.

[kiwijan]

Thanks Sam - yes I am ready to jump and shout to get Emend and i am going to write down the others you mentioned and speak to them about them too. A couple of days ago I was like Leeds - ready to throw the towel in especially as I was borderline anyway. But I will keep going. Next dose is 8 March so I've got a little while to feel better and forget what it was like. As I write, I am having a glass of wine - first one in well over a week - most unlike me!

Can I ask - after your first dose - were the next ones just as bad or did it get easier?

Thx.

Jan

[SamLee]

Kiwijan,

As you will see from my previous posts I had AC chemo and also Emend for sickness. I am a total fan of that, as AC is so brutal. I had it with Grandestron (not sure of spelling), Dexamethasone and Domperidone, so was filled up completely with anti-sickness. The Emend you take for 3 days, the others you take for 5 and then the Domperidone you can take for the whole time 3 times a day which I did. I wasn't taking any risks with the sickness. I found that not feeling sick I could at least function, so therefore felt better in myself pyschologically.

Good luck with the rest of your course.

Sam

[kiwijan]

Hi Leeds - I hope when you read this you are feeling a bit better! I am on Day 8 of the AC regime which IS short and sharp (can't remember if you are on AC or not?). I had all the same SEs as you, so won't repeat them again!! I am just starting to feel normal again. I am usually a positive, bubbly, easygoing person but have turned into a witch - in fact OH just told me I'm turning into a Rottweiler - ha ha!! I had Ondansetron for anti-sickness (I wasn't actually sick, just horrible nausea) and the frickin steroids which I think make you feel disgusting in themselves. And the constipation doesn't help either!! But when I go for my Nadir blood test on Friday I am going to demand Emend - I read from a lot of people on here that they are the best. I really think its the combination of all the SEs that gets you - and I also am not a weeper but I've turned into one lately and short-tempered and angry and down - I might investigate the anti-depressants too! I sometimes feel I would like to be whisked off to a Haven for the whole time and come back in 4 months feeling better and I don't have kids at home - just 2 dogs and OH who are copping all my flak!!

Anyway everyone here is with you and i really think you need to talk to everybody in the BC team and get some action!

Sorry for all the new starters reading this - chemo is unfortunately not a walk in the park but as everyone says it is doable - we just have to remember to speak up and ask for help when we need it!

Take care everyone!

Jan
x

[debh]

Hi Fran,

Sorry to hear you are feeling so crap, I start my chemo on Monday and am terrified of how its going to make me feel I hate feeling ill too

If you are feeling anxious, it would'nt do you any harm to get some medication to help with this, if used properly they are not addictive, and can be taken on the day your next chemo is due, it will help calm you down.

I really do hope you are feeling a bit brighter soon

Big hugs

Deb xxx

[SamLee]

Fran,

It sounds to me like as a first step you need some of the really strong anti-sickness because I know from experience that if you don't feel sick you feel more able to cope. You should ask and if necessary shout for Emend which is the strongest anti-sickness on the market. I didn't realise (as I have had all my treatment private) that it isn't always given as a first option on the NHS as it is expensive, but it is by far the best.

So shout, scream and stamp your feet for it. It really will make a huge difference.

Sam

[Cackles]

It might really be benificial to ring the Helpline. They can point you in the right direction and perhaps help with your fears. The number is tel 0808 800 6000. This is a horrendous ride at times. We have all had our days when nothing anybody can say or do will help. Your partner too may find the Helpline a useful resource of support for him while you are going through so much. There is also Peer support available for both of you if you should want it.
I hope things improve for you soon. Do use your BCN and the Oncology team. There are perhaps stronger anti sickness remedies.
Best Wishes
Cackles

[ChoccieMuffin]

Don't forget to check your temperature, as the sore throat and generally feeling rubbish can also be a sign of infection, which needs instant treatment if your white blood cells are low.

I would definitely call the hospital tomorrow, you'll probably get the quickest response from your BCN. Tell her exactly what you've been going through, and see if she thinks you need to speak to your onc or the chemo team to adjust your meds now rather than waiting for the next session.

I was horrendously sick straight after FEC1, vomiting from all orifices, and was readmitted that night to help stabilise the vomitting. After that I was on emend for the next 5, and the difference was amazing. I slept a lot (no choice about that one!) and felt knackered most of the time in between when I was awake, but didn't get the concrete guts, or vomitting at all, and only the odd queasiness occasionally, so it felt like completely different meds.

So glad you've had people rallying round for you, that will make all the difference. Hopefully you won't feel as pants as you do now all the time, you will probably have some much better days, but when you need the help, ask for it an accept any that is offered.

Best of luck and gentle hugs,

CM
x

[Guest user]

Hello again,
Well had a big chat with OH this afternoon and sorted lots of stuff out. Told him I didn't want to do the chemo anymore as the cancer has gone this is preventatitve but he was having none of that and said I was worrying about him and the kids and basically he said that I have to let go and let him deal with it. And although he doesn't believe in talking to people he thinks he would do me good to speak to someone with something postiive to say about it and maybe get a coping strategy together of dealing with chemo! He is right because its being ill I'm most scared of. Also he said that I have been so strong with the ops that he knew this would hit me, he knows me well! He has been reading all the bumpf we got from the helpline! He said that he is doing his best and He just wants me better and we have to take each day as a different day. Then the dr rang me to check how I was after yesterday impromptu hosp appt and I mentioned about my appt on friday and thought that was a good idea. So although I'm really weepy I have a plan that when I can actually talk without crying I will ring up mac or the helpline and get some help so I'm starting to actually feel like me tonight x.

[Guest user]

Leeds, don't wait till Friday - that's still 3 days to feel cr*ap. Call your onc team tomorrow and explain your symptoms and ask them for some help. They are there to make this 'experience' as painless for you as possible!

Julianna

[Guest user]

Sam, no I don't think you're being harsh. I have one relative (won't even say how we're related as this person probably would trawl through here to see if they can spot my login name! This person initially tracked all my appointments and treatments and wanted to phone me after each one to get the full low-down, something I was just not up to. Now I don't tell them my appt. dates or the outcomes. Just keep saying everything's chugging along fine. Oh, and I screen all my calls!! This person is the world's biggest worrier, something I equate to negativity. I know it's easy to say but worry and negativity are the most useless emotions known to mankind and do no good whatsoever but make you even sicker. Most of my family and friends are brilliant, but you always have a needy one who feeds off the worry. Something for them to do. Don't ever feel guilty about not contacting these people when you don't feel up to it. You have to learn to put yourself first and focus on good outcomes. I love the PAC man analogy.
Mxxx

[SamLee]

Fran,

Glad that everyone is rallying round.

Word of advice which might sound a bit harsh but whilst you are going through the treatment you need to be selfish to your needs and what you don't need is needy relatives.

I had this with my dad (I live in London, he is in Yorkshire) making out it was all about him and how dreadful it was for him and what a shock etc it had been for him. In the end my husband had to basically tell him that it wasn't about him and that I needed support because I was the one going through treatment. I didn't see him until after I had finished active treatment because I couldn't cope with travelling.

Like I say it sounds harsh, but until you get through the chemo bit of the treatment you need to put yourself first, second and third. And everyone else needs to realise.

Sam

[Guest user]

Hello again!
Well my family has rallied round me! My mum came I got up she changed all the beds sorted out the washing. My sister made my lunch. Oh is picking up eldest from school and making pancakes and lo is being taken to grandma fed and washed for bed and coming home at bedtime! Hopefully I wil be feeling brighter later. Just had everyone's emotions to deal with my mum getting upset with me,she's needy, but my sister is amazing and she understands everything I'm going through cos she went through it. So she has turned her world upside down for me! However I've said that when I'm better we are going to spend sometime together properly with me not in bed! So thank you for your kind words I'm still scared but feel a bit better! Will speak to the dr on Friday. X

[sarahlousie]

Hi Fran,
Sorry to read that you are feeling crap, I've been through the lot and I am now on the otherside, chemo is not nice and has nasty SE BUT and its a big one the stuff works, my 6cm lump went down to an amazing 2mil with chemo, just keep reminding yourself that this chemo works at getting rid and shrinking cancer, its saving your life, I used to imagin/visualise whilst having the chemo that the chemo was PAC man the computer game and it was chomping away at those rogue cells, you can do this, chemo is doable the time will flash by quickly and before you know it it will be over and you will be on the otherside, its always harder in the beginning its a scary place to be in and we all understand that, just keep on going, take plenty of anti-sickness meds before you start to feel sick they have drugs for every known SE, please do not suffer take whatever they have and make sure you speak to someone about the SE you are experiencing, also as you have a good support network lean on them to help you out if you feel too tired or just plain ill, let others help, thats what support is (I think we all rely on ourselves too much and need to let others help), the forum is great for virtual support and we all do understand what you are going through, come on and rant, cry, get it out of your system and treat yourself to something you really like it could be cake or it could be a new pair of shoes but treat yourself you deserve it.
Sending you loads of hugs :0)
love and light
sarahlousie xx

[Jules68]

Fran,

Reading your post and the replies reaffirms you are not alone...

Think if we are honest we have all felt this way...with LO's too it is hard and with the lovely support you have both physical and virtual you can do this!!

I agree with SE's being more managable once your medication is tailored to your needs, speak to your GP and oncology team x x

Try to rest when you can, drink lots of fluids..green tea, water, juice etc...

Just want to send you a big hug x x x

Julie x x

[Guest user]

Fran,
Nothing you are describing is unusual and you have a lot to deal with right now. There will be better days on chemo, so don't imagine this going on and on. You will get days when you can do most of your usual things, so just work with your body ad do what it tells you.
When panic takes hold I always have diazepam to hand. It has had a bad press in the past, but it calms instantly and you don't have to take it regularly like anti-depressants. I call it my double brandy because it just takes the edge off my nerves and even helps me to sleep. A good rest takes away the worst of these feelings. Just after my second treatment I had a terrifyingly shaky weekend and gave my OH a very hard time. It didn't occur to me to take a tablet but it would have been better for everybody if I had.
People will learn that you're not superwoman - and so will you! You'll get through this and so will your family.
There'll always be someone here to listen, but practicalities first, see your GP and get something to calm you.
Sending you big hugs,
Kathleen

[Guest user]

Hello
Thank you so much for your replies! I'm just resting in bed now hoping for sleep and a less sore throat!
I think I feel so crap cos before bc I was never ever ill! I didn't even like taking paracetamols so maybe its my body rejecting all this horrible medicine!
Hopefully I will feel brighter tom or later!
Love fran x

[Historygirl]

Hi Leeds39

Poor you, you have got a massive amount on your plate - big hugs!

You've had helpful replies already from people with experience of chemo and it's SEs. I haven't started chemo yet (will be starting EC either this wk or next) but my anxiety levels about - oh everything - are horrendous. My GP has been great so far and I'm going back to see him today for more advice. So if you can get in to see your GP sooner than Friday I think that might be a good idea.

Did you say you'd tried your local Haven? I'm going to one near me on Friday to see a therapist. Another posssibility?

Finally don't forget the BCC helpline.

Hope you are feeling much brighter very soon.

D x

[Guest user]

Leeds, most side effects, even the crying, but sickness deffo, can be 'fixed' by your oncology team. Call your unit and tell them all your symptoms - they will adjust your medication to alleviate it.

As for routines - I personally threw all my usual routine out the window. I do whatever my body tells me it needs - sleepy at 1 PM? Let's go to bed. More ice cream? No problem. I appreciate that it is probably not that easy for you with two small children but if you have a good support network, it should not be impossible to do!

We all want to run away - I am not doing too bad with side effects but fecking HATE going for the next infusion...

[Guest user]

Hey!

This is my first time posting on here and I wanted to share my experience with you to (hopefully) help!

I had my first cycle of FEC-T chemo last week - same as you felt sick (was actually sick first night) first few days and then constipated too! Now i'm going through the sore throat stage and have hair loss to look forward to next week lol!

I went to boots and bought some travel bands about £8 and I do think they help. I've also been eating sultana bran for brekkie. I've heard liquorice tea is very good for constipation - I was reading on here that it is a very common side effect of the anti-sickness.

It sounds very much like reality has only just hit you..esp if you, like me, are normally very positive. I have come to realise that BC deserves real respect and I've actually really started to listen to my body - i.e. If I feel tired - rest!! I've found herbal nytol are quite good to take on a regular basis and the chemo nurses were fine with that.

Haven have sent me their recipe book and dvd as I live too far away from one, I really do recommend getting in touch with them and having a go at the free relaxation audio cd.

Feel free to pm me if you would like to chat more - I hope you're feeling better soon xxx

[SamLee]

Hi Leeds 39,

I can sympathise as I had AC chemo (a lot of ladies on her seem to have FEC so I don't know how different they are). AC is one of the strongest hence why you probably feel so bad.

I had 4 and after the first one felt so bad I thought I couldn't go on. Its about getting your side effects sorted and then you will find it easier.

Things to ask your doctor - if you are feeling sick then you need to mention this. I was SO scared of being sick that my onc gave me all the anti-sickness going. I was on Emend tablets (one an hour before chemo, one on day 2 and 3), Grandesetron (not sure of spelling), dexamethasone and domperidone. I took them all religiously and didn't even feel sick once. The domperidone you can take for the whole time whilst on chemo, so I took them 3 times a day for 4 months.

Depending on how many sessions you are due to have overall it might be worth asking if you can have a portacath inserted. I did and it was the best thing ever. Mind you I have had to have 12 months of Herceptin as well. AC is particular rough on your veins, I had the first one in the back of my hand and it took a couple of months for the soreness to go.

I also had laxatives and anti-dirorhea medication to use just in case and also Zopiclone (mild sleeping pills) to use as and when. They aren't addictive by the way.

If you can get the SE's sorted you may feel more able to cope and therefore feel less weepy. I know I did.

Hope these practical tips are useful to you.
Sam

[poppyD]

Hi

Doc will know how to advise I would ring and see if you can get earlier appt as I think you need it now

Depression is part of the process. acknowledging it is the hardest part you have acknowledged that you need help and hopefully if you have good doc you will get the right advice

I have to make a decsion re chemo and know i will be exactly the same and i will hate the process

My son who is 28 also has a rare brain tumour and is awaiting his 3rd episode of surgery i cry lots of the time but like you i have lots of people around me

it was hard for me to swallow my pride and have chats and cry in front of GP but he has been good at emotional support and reminds me that the physical stuff is bad enough but it will take a long time to adrdesss the emotional affects.

Dont be hard on yourself go and get help as someone said to me at some point you will look back and wonder how you survived this terrible time

lots of love

poppy x

[anng]

Fran, so sorry to hear you are feeling like this. It can't be easy with young children too. I did feel weepy the first three days, I blamed the steroids (they got the blame for everything).

Up here in Aberdeen we have a cancer support place called CLAN. I have found it a real help and so supportive. I have also met others going through similar and different experiences. They also offer therapy sessions e.g. Reflexology, massage. Not too sure if there is anything like that beside you? Just a thought.

Ann xx.

[barneyb]

Hello there

Really sorry to read your post and that you're having a bad time after the first chemo. I remember (like you) I was fine after the operation physically, it was only when I went for pre-assessment for chemo that it hit me. I suddenly realised I was ill. I felt I was on a treadmill that I couldn't get off. I'm also in Leeds so there's a good chance that you are being treated by the same staff as I was. One of the nurses at the Bexley Wing told me to buy a little book and write down every day how I felt. For some reason this helped me and as I went through chemo I could see a pattern to how I was feeling and cope with it a little better. The other thing was I had a really good BCN who would spend a long time on the phone just talking to me. I hope you have the same care.

It must be very hard with young children but it sounds like you have a good support network around you so take all the help that is offered.

Wish I could be of more help.
Take care
Beverley xx

[Guest user]

Basically I was sick first night had 4 days of feeling sick but not sick, then constipated for 5 days then 2 days of d then two days of not swallowing! Throughout most of this time no sleep! OH is obsessed with routines! Yest hosp told me to go in cos felt so bad but couldn't even get any blood out of me cos veins bad and that's only after 1st time!also hardly any sleep through this time!
Now cos I'm feeling so bad and so tired I just can't stop thinking about the next time. I was never scared of needles or drugs but not I'm petrified!
Seeing my dr on friday so I'll prob mention it but its the constant crying that's worrying me! X

[poppyD]

hi
you sound as if you are having a crap time I expect the reality has just hit you and you just feel emotionally and physically shattered.

dont know if you get any sleep, my GP reminded me that if you are managing without sleep your coping mechanisms are affected. He prescribed me some Temazapam I have only taken it twice but it really helps when you are at your most low

If you have good GP it is worth going to see them to see if they can help. Also just chatting with helpline and breast care nurse may help

I know that you think of your children all the time and i think this is difficult especially as yours are young but they cope better than we realise

Just because you feel awful today doesnt mean that it will last

Love and big hugs too you love Poppy x

[Guest user]

Leeds, sorry to hear you have such a rotten time of it! What's wrong?

[Guest user]

Hello ladies,
I'm not coping at all! Had my 1st EC 8 days ago and I have been ill for 8 days. Yesterday I had to go to hosp to be assessed but luckily they sent me home!
I've two young children, 3 and 7 and an OH. Also got a good support network, mum sister and brother and mum in law plus friends. Before all this I was a really bubbly loud person! Even after my ops still I was fine, now after 1st chemo I've had a meltdown, for the past 3 days I've been crying on and off all day! I'm terrified of more chemo and yesterday my veins were funny and didn't work they tried 3 times and it still hurts.
I don't know if I need pills or just someone to talk to! I've seen the haven in leeds but I just need to come out of this pit of despair I feel. Cos right now I don't want to do anymore chemo I just want to run away!
Please can anyone help! X