Chemo - your story

[Hoofy]

Just wondering how you soldiered through it. Any stories and suggestions?

[drivin_me_nuts]

Depends. Everyone's sensitivity to chemo is so very different. My missus had minimal side effects other than 5fu giving her a high temp and a poor tum. Some I saw were having a miserable time with pain and all sorts.

Mindset has a very substantial part to play in how you handle the side wffects. Are you going through chemo? Quite a few also take into the sessions some vivid imagery work and affirmations to help support themselves and feel more in control.

[Firefoot]

A chap I work with has been having Chemo. He keeps the mindset of "short term discomfort for long term gain". Seems to be working for him. He has felt pretty rough at times and has lost all sense of taste.

[Hoofy]

Thanks. My dad had his first shot this week. Tummy trouble (both ends) and lethargy but nothing else reported as yet. He has been generally positive to date (he was doing the gardening two days after receiving chemo!) but it sounds like the effects are beginning to break him.

I like the idea of affirmations. Will have a think about them as it's something I have used in the past for other matters.

As for the short term discomfort, definitely agree there - I've seen others go through it and it does get better after a few days.

[drivin_me_nuts]

Hoofy said:

Thanks. My dad had his first shot this week. Tummy trouble (both ends) and lethargy but nothing else reported as yet. He has been generally positive to date (he was doing the gardening two days after receiving chemo!) but it sounds like the effects are beginning to break him.

I like the idea of affirmations. Will have a think about them as it's something I have used in the past for other matters.

As for the short term discomfort, definitely agree there - I've seen others go through it and it does get better after a few days.

When I am logged in to my pc, i'll send you a link to one of the scripts we used whilst going through the chemo.

[Hoofy]

drivin_me_nuts said:

When I am logged in to my pc, i'll send you a link to one of the scripts we used whilst going through the chemo.

Thanks - much appreciated.

[Speedracer329]

Hoofy said:

Thanks. My dad had his first shot this week. Tummy trouble (both ends) and lethargy but nothing else reported as yet. He has been generally positive to date (he was doing the gardening two days after receiving chemo!) but it sounds like the effects are beginning to break him.

I like the idea of affirmations. Will have a think about them as it's something I have used in the past for other matters.

As for the short term discomfort, definitely agree there - I've seen others go through it and it does get better after a few days.

Sounds very like the symptoms I experienced. Very lethargic, tummy trouble, loss of appetite & of taste. Didn't want to eat anything & when I did it came straight back up. I was a 30 year old very fit semi-pro footballer, 6ft & 12 & a half stone, & I lost almost 3 stones & felt like the draught under the door would knock me over. Then there was the hairloss. Some people are lucky & it grows back, but I wasn't one of them!
Just be patient & be there for him, I didn't know who I was or what was happening half the time, but I understood that family & friends were doing all they could & that helps.

Although I have suffered from other problems since, I have been clear for 25 years now, & being positive really, really helps. I hope you all get the reward of him recovering his full health.

[Hoofy]

Speedracer329 said:

Sounds very like the symptoms I experienced. Very lethargic, tummy trouble, loss of appetite & of taste. Didn't want to eat anything & when I did it came straight back up. I was a 30 year old very fit semi-pro footballer, 6ft & 12 & a half stone, & I lost almost 3 stones & felt like the draught under the door would knock me over. Then there was the hairloss. Some people are lucky & it grows back, but I wasn't one of them!
Just be patient & be there for him, I didn't know who I was or what was happening half the time, but I understood that family & friends were doing all they could & that helps.

Although I have suffered from other problems since, I have been clear for 25 years now, & being positive really, really helps. I hope you all get the reward of him recovering his full health.

Thanks. Yes, he is talking of loss of appetite. I'm trying to bring positive vibes home.

[IforB]

Sickness is generally far less of an issue today than it used to be due to the anti-sickess drugs that get handed out.

When I went through it 4 years ago, it wasn't a lot of fun, but it really wasn't that bad.

However, everyone reacts differently and as there are numerous different types of chemo, then my how they affect people is also different.

I had some monor issues along the way, such as my tastebuds were a but out of whack and certain smells became very unpleasant, other than that, it was fine really. The only time it became a chore was when I had seriously high dose stuff and a stem cell transplant, but that's pretty radical treatment and hopefully your dad won't need that. Most of the issue with that was down to the fact that I was stuck in an isolation room for 6 weeks, so I was just bored out of my mind!

So to sum it up. Chemo isn't fun, but for most people it's really not as bad as some people like to make out. You just feel as if you've got a bit of a cold for most of it and you get quite tired. Not fun, but not terrible either.

[Hoofy]

He's certainly experiencing the taste bud thing as well.

[Broomsticklady]

Ah Chemo! Joy! Those oncologists are sadistic buggers - they have lots and lots of different poisons to use depending on what takes their fancy and how they like their patients to suffer!! Lots of poisons, lots of side effects, and no 2 people will react exactly the same to the same poison - there is a tendency for some to cause sickness, some tiredness, some hair loss, but not everyone reacts the same.

My experience - I had 4 different chemos, 3 sessions of 3 initially, and then should have been 3 sessions of 1. The 3 of 3 - I had sickness, yes you're right, its more readily controlled or prevented but not much fun while they work out which combination is needed. Some head hair loss, tho I used cold cap being a girly, but total baldness elsewhere which can be uncomfortable - nasal hair you don't notice til you've not got it! Thrush - oral and vaginal - neither fun. Tiredness, but picked up fairly quickly and by week 3 usually OK ish (looking back, didn't seem so at time!)

Taxotere - very powerful effective poision, but boy does it hate people! Fatigue - cannot lift head from pillow - no strength in neck - or anywhere else. Ache ache Ache! Appetite suppressed, taste buds to shot, thirst but can't find anything to satisfy. I was helped here by having septicemia which didn't clear, and they finally decided that the third cycle would do me more harm than potential good. In retrospect I worry about that - did at the time about being under treated - but couldn't phyically or mentally take any more. 2.5 years after initial diagnosis I have bone mets, and can't help when I'm black wondering about cycle 3 ...

Have read a lot, found out a lot in between - I know my 'next' chemo choices are both tablet which is a relief having no veins left - blood taking is a night mare, and cannulas impossible. My next chemos apparently dislike feet and hands and make them very sensitive to touch which sounds fun - standing anyone?! Oh yes - they also attack nails. Other than that they're quite tolerable and administered long term rather than in x cycles.

So it's horses for courses. Play it as your Dad wants it played, tho try and keep tempting him - sometimes the most odd things hit the spot - I recall Chinese hot and sour soup doing wonders for me!! Bear with him - he will get crabby and unreasonable at times but won't mean it. Let him rest - marvellous thing sleep - wouldn't do without my 14 hours a night right now! Keep a countdown, remember the bright days and when he has a crap one remind him of how much better it can be - its not always as it is now. Try and keep his spirits up - I remember being quite 'excited' by my first ever viewings of Jeremy Kyle - it was so bad I forgot how I was feeeling!! I was told to think whatever it was doing to me think how much worse the cancer was feeling - that was quite satisfying! Contact district nurses - they can help with all sorts - I had a grab thing to help me pull myself out of bed and raised toilet seat cos I didn't have strength to get off normal one - you know its love when your OH has you put your arms round his neck and pulls you off loo!! MacMillan nurses also useful contacts, particularly with pain regimes - I bless mine right now.

Good luck and look after yourself so you can look after him - you knackered ain't much good for him.

Nina

[King Herald]

A friends sister had chemo for breast cancer. She was a horrible big fat 250lb lump of a woman, and the doctor told her that she is the only person he has treated who gained weight during chemo! She never lost her hair either.

[Hoofy]

Broomsticklady said:

So it's horses for courses. Play it as your Dad wants it played, tho try and keep tempting him - sometimes the most odd things hit the spot - I recall Chinese hot and sour soup doing wonders for me!! Bear with him - he will get crabby and unreasonable at times but won't mean it. Let him rest - marvellous thing sleep - wouldn't do without my 14 hours a night right now! Keep a countdown, remember the bright days and when he has a crap one remind him of how much better it can be - its not always as it is now. Try and keep his spirits up - I remember being quite 'excited' by my first ever viewings of Jeremy Kyle - it was so bad I forgot how I was feeeling!! I was told to think whatever it was doing to me think how much worse the cancer was feeling - that was quite satisfying! Contact district nurses - they can help with all sorts - I had a grab thing to help me pull myself out of bed and raised toilet seat cos I didn't have strength to get off normal one - you know its love when your OH has you put your arms round his neck and pulls you off loo!! MacMillan nurses also useful contacts, particularly with pain regimes - I bless mine right now.

Good luck and look after yourself so you can look after him - you knackered ain't much good for him.

Nina

Thanks for the reply. Yes, I've tried to bring positive words eg it's clearly working and the cancer is therefore being killed (of course, to what degree we don't know until the tests).

I think I read correctly that you're still going through it so good luck with your treatments, too!

[Hoofy]

King Herald said:

A friends sister had chemo for breast cancer. She was a horrible big fat 250lb lump of a woman, and the doctor told her that she is the only person he has treated who gained weight during chemo! She never lost her hair either.

That's peculiar!

[Hoofy]

swerni said:

On my iPad right now but will happily share chapter and verse of my Chemo in the morning

On a scale of 1 to 10, I would put it maybe a 5, tops

Please do. I'm sure it will be useful to everyone who is going through it right now.

[Hoofy]

Thanks, Swerni. Glad it's helped you to make something of your life. It's tough seeing the person you have looked up to all your life suddenly look nothing more than a skeleton with skin on who can barely get out of bed.

When I was alone with him, he was still talking about long term investments, though. His mind is still ticking over.

[Blackpuddin]

Inspiring stuff swerni, without wishing to patronise may I say a hearty 'well done'.

[King Herald]

swerni said:

Looking back, I'm genuinely glad about what I've been through.
It made me take stock of my life and re evaluate my priorities.

Life for me now is all about the next big adventure, I'm no longer prepared to dream about doing things.

Stirring stuff, and one hell of a wake up call.

[Hoofy]

[drivin_me_nuts]

Thanks for posting Swerni. One of the highlights of last year was getting to meet you and many other survivors and stubborn buggers who stick two fingers up to it. You certainly inspired me.