Starting Chemo - what did you and did not expect? What practical things did you find invaluable in hospital for your stay?

[Iamseeingstars]

Two different questions.

If you knew beforehand what to expect vs what you know now, is there anything different you would/could have done?
Are their any tips you can pass on that doctors dont tell you?

I wont be starting chemo for another couple of months (long story) but it will be extremely intensive one week course and I know about hair loss, dry skin, not wanting to eat

I dont know enough about the practicalities, what to prepare for, what to buy for hospital stay

I know I need to prepare myself emotionally and it is going to be a huge rollercoaster.

Any tips you can pass on will be greatfully appreciated.

Sorry I havent posted in Tamaxifen thread, I see that as a good social thread rather than for answering specific questions.

Hope everyone is feeling good

Morning stars

Not sure about your specific course of chemo , mine is done in a couple of hours , once every 3 weeks .
But general things I have experienced , during and after chemo , are as follows .

On the day my chemo is delivered through a line they put in my arm . they are having increasing difficulty getting a vein for this so are now talking about a permanent line . Other ladies have said this is a good thing .

Mine is delivered by bolus (nurse sits there inputting meds syringe by syringe) and when she gets to the one with the steroids in you get a big rush of tingly sensations in your undercarriage !!! Thank the Lord a friend warned me about this !

Mine also makes me pee bright red for a couple of days afterwards !

I get an anti sickness syringe driver with every chemo now .
It is a pump that delivers anti sickness meds over a 24 hour period . I have it for 5 days post chemo , and it stops me being sick at all . The district nurses come out every day to re stock it .
Worth asking for if your chemo makes you as vomitty as mine did !
It does make you quite sleepy , but I find that much better than being sick .

Accept that you will probably feel very tired for the first week post chemo .
But also accept that is very different for everyone . Some people are wiped out by it , others carry on working throughout .
No reaction is the "wrong" one . Each chemo session is individually tailored to your personal cancer and your body reacts on an individual basis too .

Any questions at all , you should be given a phone number that you can call on a 24 hour basis . A chemo nurse normally mans the phone line . And you can ask them any question at all .

Alternatively , come on the Tamoxifen thread and ask . I have asked all manner of mad questions , and someone ALWAYS has an answer for me . Nothing is too embarressing for us , someone will have been there and done that !
If you feel too shy , feel free to PM me . We are there for anything !

Seeingstars - I think your experience may be very different from mine as mine was one dose every three weeks. I was also pretty lucky and SEs were not too bad.

That is pretty much the luck of the draw I think, but your intensive course is likely to be trickier, and I imagine that is why you are staying in for it.

But things I think it may be helpful to know:

They give you a lot of antisickness medication to stop you being sick (obv ) and this can make you very constipated. Being in hospital and not moving about is likely to make that worse. They do also give you some constipation medicine, and this cocktail of drugs makes you very wired and unable to sit still. Take plenty of things that will relax and calm you down (music, relaxing books etc), but also stuff to occupy your brain if it won't shut off as you may be unable to sleep. Have lots of fresh fruit and loads of water.

Take all the antisickness stuff they offer, and on time, even if you feel OK. You have to stay on top of it. Once you feel ill it's a bit too late.

Ginger is great for nausea. A can of ginger beer is an absolute godsend. Take some in.

if you feel shit, don't be brave, tell them. There is a lot they can do to help with SEs.

If I think of more I will come back to you.

Thinking of you and hoping you don't have too many SEs. x

Have they told you what the chemotherapy drug is?
I've just finished chemo for breast cancer but mine was the once-every-three-week sort....four lots of one sort of drug, then four lots of another sort (FEC which is actually three different types on one day...and Docetaxel). People's responses to chemo seem to vary so much. Some find it fairly fine (I did, mostly), other are floored by it.
Either way, hope we can help out a bit...

im another one who had there chemo every 3 weeks so my experience is different,i should imagine yours will be much more intense so your going to get very tired. they will give you medicine for any side effects you have but they tend to start off with the cheaper options that dont work aswell so if your suffering tell them and they will give you something stronger.

one of the things i didnt expect was the nasty taste in my mouth sherbert lemons are brilliant to refresh your mouth, i also found toothpaste painfull so i invested in some childrens toothpaste and a soft brush.

nearer the time they should give you a list of stuff you need to take in with you.but its best to take in stuff that will help pass the time books,crosswords,pens,mobile,music etc the food is foul so take in lots of munchies.

pop over to the tamoxifen thread and let us know how your getting on.

The hospital stay is something I might be able to help with. Take clothes which are easy to get in and out of, so pjs that button up at the front, vest tops if you find those comfortable. Layers are good the hospital will feel very hot, but you might get SE that make you feel cold, so layers covbers both eventualities. You will need some cash, or card the the telephone, TV internet system if your hospital uses them, so if you feel really rotten you can at least lie and watch tv. A blindfold and ear plugs will be invaluable.

Try and keep your hydrated, with water and tea, the heat, plus being in bed can make you dehydrate vbery easily. It will help a little with the constipation too (my ds gets this when he is in hospital because of the pain killers and being bedridden, fluid makes a huge difference)

I nice fluffy towel, which someone can bring you a fresh one every day makes me and my ds feel much better.

The nurses are there to care for you and support you, so don't suffer in silence, lean on them and ask for help, and tell them if you feel rotten.

I am sorry you are going through this, but take hope from those who are on the Tamoxifen thread, many are going through this now, or have been through it recently, and so know how it feels and talking to them might help. xx

Thanks everyone. I will be having a Hickman Catheter and in isolation for a few weeks. I have been reading about the cocktail of drugs that you are given which is really scary.
The constipation comments made me smile. Just been in hospital, extremely constipated because of the crap food, solution - take a pill. Better food would have helped.

Iamseeingstars, first of all just to wish you all the best for the challenge ahead - and hats off for the way you are preparing for it in spite of the lack of support from friends in RL. I'm so sorry you have it all to deal with, the illness/treatment and lack of support both.

My friend's brother went through a bone marrow transplant/intensive chemo about three years ago - he had lymphoma - and it was hard, but (his words) it was 'do-able'. I know he wouldn't hesitate to encourage you, he is so well now and no one would have believed it possible pre-transplant.

If its of any help, I'm happy to ask my friend to ask him any specific questions you have, and pass on the answers - feel free to PM me.