Been feeling really positive up until now but suddenly feel low and anxious and paranoid about secondaries. I am on day 9 after 2nd FEC and still feeling so tired had to offload kids again, feel so useless. Had routine CT scan yesterday and have to wait until next Thursday for results and few really anxious. I have had so many ache and pains and also a tickly cough for 2 weeks I am paranoid everything is a sign of spread. I am not sure I will ever be able to deal with the worry. I know I’m probably feeling low because of all the drug but it is so hard to stay upbeat when you feel like this.
Sorry to moan I just feel like I need to off load some anxieties. If I talk to my husband then he worries, he is ok as long as I am.
I need to snap out of it I know.
A couple of other things I need opinions on about chemo side affects, has anyone had it where their whole body feels tender to touch and also my nose feels sore and weird. Oh just read someones advise about not ment to eat grapefruit and I have been eating 2 a day its been my mad craving - better stop now.
Eyebrows and eyelashes in tact but will I lose them when I start TAX.
Also does anyone know if you can have a week off before you start new chemo. My best friend is getting married in September and at the moment it works out 3 days after having second TAX, anyone know if its likely I could go as on FEC there is no way I could go on day three. I thought if I could delay the start of TAX for one week it would work out the wedding would be 4 days before a 2nd TAX chemo.
And one more thing has anyone heard of beta glucan its the only supplement my oncologist is happy for me to take?
Oh and scarfhut.co.uk is excellent for cheap bandannas and only charge £2 delivery and nearly always receive next day.
sorry you are feeling so down, ive been felling similar after fex no. 3. had lots of aches and pains too especially in back and stomach. Starting tax tomorrow so will kepp up up dated on side effects and hope you can have it delayed for a week
xx
Poor you Bugnut - I am day 14 after 3rd FEC. It does bring you down, and I think sometimes it’s hard to believe it is the drugs when you are in the middle of it. From day 7 this time I thought I was back to normal, physically and mentally. But had huge boo hoos about my relationship with husband (not actually an issue), convinced myself one of the children had leukemia(!), was too paranoid about my appearance to go into tescos, etc etc until day 10. On day 11 I woke up and thought what the hell was THAT all about! Only afterwards did I realise it was the drugs.
I’m not saying that your worries aren’t real and serious - of course we all have them. But I am trying not to let myself worry about the future during chemo, because I know my brain really isn’t well equipped to cope with it. I think that once chemo has finished and rads are over and I begin recovering my physical health, then I will have to start dealing with the new reality that is inevitable after cancer.
Everytime anyone says anything about the future - such as comments about what my children might do when they are grown up - I feel cold, because at the moment I don’t feel I have a future. But I do and you do. No-one knows what will happen to them tomorrow or in 10 years time. For us this knowledge and realisation has hit us very suddenly. But it means we are actually more enlightened than most people are. The trick perhaps is to use this enlightenment to live a better life, rather than be so scared of it that it paralyses you.
But you’re right - chemo stinks! Whenever anyone asks me how the chemo is I just say “it’s s**t”. And leave it at that. Sums it up for me!
Good luck with the scans. Tests stink too. I hope it goes well.
I still have eyebrows and lashes too! here’s hoping we both hold onto them during TAX.
Hi Bugnut
sorry you are feeling poo it is the treatment but you will feel better it takes so much out of us and as women we always recover from most things really fast we just expect too much. The problem with your nose could be the loss of nasal hair. If you get a drippy nose I think that will confirm it.
Take it easy try not to worry about secondaries I am sure you will be o.k.
I am sorry to read you are feeling very low at the moment. As well as the support you have from the other users may I suggest in addition to this you contact our freephone helpline where you are able to talk in confidence to one of our trained members of staff about how you are feeling. They are able to offer you a 'listening ear ’ as well as support and advice if required. The number to call is on 0808 800 6000 and the line is open Monday - Friday 9am - 5pm and Saturdays 9am - 2pm.
Your comments really help and it is true myself and my husband really live for the moment now and I really cherish every second with the children and that is how everyone should be living, so we could say in some ways we are lucky.
Oh and I think it could be lack of nasal hair - weird.
Hey Bugnut
Just wanted to send big cyber hugs to you…
Can’t really say much else other than i’m not sure ul have much luck with the wedding, and moving chemo but hey why not ask the question?? all oncs are different i’m sure-good luck tho!!
I hope u feel a little happier today, if i’m waffling it’s because i’ve just had chemo no.4 this morn!! Sorry…
Lauren.x.x.x.x.
Don’t ask, tell nicely! It seems perfectly reasonable to me that you ask for a week’s delay in your chemo. The feel good it sounds like you’ll get from the wedding will really give you a boost. And don’t let anyone, oncologist or not, pretend that a week’s delay will make one iota of difference to your future. Cancer just doesn’t work like that. I felt lousy on Day 3 of taxotere but pretty OK in week 3.
Sorry you’re feeling down…I agree chemo stinks. Chemo has always made me very depressed so the whole big picture stuff feels unmanageable. And waiting for results is the pits. Go gently with youself.
Hi bugnut and everyone else,
… if it makes you feel any better I definitely found some mood patterns going on during my treatment … the problem is it takes a while to work out what is affecting you … what i mean is if you have 4 cycles of FEC then you’ll probably know by cycle 3 or 4 !!! …i.e. when you’ve nearly finished.
… some of the mood swings were very odd … I put it down to to affects of drugs, withdrawal affects from drugs and in my case low neutrofil levels … although you get used to it it must be very very diiffucult if you’ve got kids to cope with at the same time - so getting help is a good idea …
You sound like you are worrying a lot … I blame this on the UK culture myself … they feel obliged to tell you all the bad news just in case it applies !!! … over here they tell you b*gger all and if you ask about negative effects they just tell you not to worry as you’ll soon know if you’ve got them with a bit of mumbling… they do worry about me taking my temperature though and make surei do that if I think I’m hot (which is often as it’s stinkin hot here - its impossible to tell the difference between an infection, heatstroke and an early menopause without a thermometer!)… I have to say ignorance has been positively blissful in many ways and I would recommend it …
It is posible to have delays during treatment - except for one all of mine were delayed due to low neutrofil production … obviously you need to have the approval of the medical team … having said that there may be lots of colds around and lotsof kissing of long lost relatives so maybe not such a good idea?
anyway - you will get through it - we all do - I’ve had several dumps on here when feeling down ad my OH gets into such a spin it’s not worth moaning on at him …
Feeling better as in good week. Unfortunately cannot delay chemo and it will work out the wedding will be 3 days after 2nd TAX but I will do my best to go whatever it takes even if I just see her get married then crawl back to the room… My friend said she has put by the best room for me, very sweet of her but I probably won’t care where I sleep. CT scan all ok so massive relief there. Feeling ok about 3rd FEC just want to get on with it now and then I can say I’m half way through chemo.
Just to let anyone know if interested I’m taking Beta Glucan (Glucasan brand) as recommended by oncologist who does not agree to supplements but has oked these. They are mean’t to boost immune system so hoping they will help. Bit pricey at £17.99 for 2 months but worth a try.
Getting wig trimmed next week but so used to head scarves now I feel like a hippy chick and quite like it.
Why cant you delay chemo? This sounds like the hospital’s convenience and nothing else. I am usually very cautious about challenging other people’s medical advice but honestly honestly there is no medical reason for not having a week’s delay in chemo
Hope you can do a mind over matter thing and get to the wedding. I got to my auntie’s funeral which I really wanted to do even though it was on a bad chemo day.
i delayed chemo 3 so that I could take my son to uni for first time and then 5th got delayed by them cos I had to have infected wisdom tooth removed and healed before they would carry on
I asked if I could have my chemo delayed because I wanted to go to silverstone! One Doc said yes but the nurses were not happy and said I would have to have it if the consultant knew. I asked the registrar again when I saw him again and he said it was ok but would confirm it with the consultant. As it turned out I was neutrpenic anyway (low white blood cells) and couldnt have my chemo. Still went to Silverstone of which they were probably even more horrified. It doesnt make any difference having it delayed a week. Ask them again. I have my chemo delayed again till next week cos my gloods are low again.
Lyn x
glad you’re feeling better bugnut - when it hapens again you just have to remeber “this is happening againI’ll be back to normal soon”
good luck love FB xx
So sorry you have been feeling unwell. I have got my neighbours wedding day in sept day after my 3rd taxo. I asked my onc if I could delay it as I really wanted to go and enjoy it. She has agreed to it, saying it would do me good.
I’m on TAC ( tax being an element of that) and Im delaying mine for a week to go on hols.
I have to say that for the first 3 days I’m fine anyway - i have 16mg of dexamethasone on days pre,1 &2, 8mg of dex on days 3 & 4 and up to 7 if I want. My consultant sugested that when I went out for my birthday that I take a little dex that morning to ensure I had a good day - he even gave it to me!
have to say though that I dont take all that steroid - just the first 4 days as otherwise I’d never sleep!!