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