Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

@TopOfTheCliff that made me laugh. Told my other half what the injectons are like..he has volunteered to 'stab' me if I need any help. Says he's often thought about it!!
The joys eh.. married life he didn't expect episode 3

He was joking. I'm sure!!

@somewhereonthe517 my DH enjoyed the jabbing far too much and started to wish he had been a paramedic. To be fair he is a well trained first aider and great in a crisis so he would have been a good one. Too late now he's a happy pensioner instead!

@TopOfTheCliff Huge congratulations on the more-or-less end of treatment! Most of us are fine just running a cancer marathon, but you had to make it an ironman. Overachiever?! 😜

@ememem84 Just popping in to say I was you 4 years ago. 39 with a five-year old and a nice little breast cancer that needed surgery and chemo and rads and all that jazz. Happy to chat if you need anything.

@KentishMama thank you. I’m so sorry this happened to you too. Sucks doesn’t it.

but im finding that having the two dc is forcing me to not mope around. Life is too busy. And I’m able to take them to their activities and do school pick ups more now that I’m off work. So that’s a bonus.

it’s shit but it’s given me time to reevaluate things. As trite as that might sound.

@ememem84 Agree, young kids make it hard to mope around. And having the treatment privately is also great, so you don't have to deal with NHS scheduling chaos. I'm sure you'll get through this nicely :)

Yeah that’s a bonus! Admittedly I’m in jersey so we don’t have the nhs here. But our system is still nightmarish.

ive got an apt Monday morning for bloods and chat with oncologist. Fine.

but yesterday I was sent a letter telling me I’ve got a telephone apt with oncologist at 330 on Monday which is confusing. But. As I have to physically go for bloods on Monday anyway I’ll check it out then.

the main benefit of going private though is the speed at which things have happened. I’d still be waiting for a consultant appointment if I didn’t have insurance. And when I have my surgery next year I’ll get a nice room for my hospital stay.

@GrannyGoggles I felt a bit rough yesterday evening and first thing this morning, but I think it was because I had to be nil by mouth for the port insertion, and was also incredibly thirsty. And tired. I slept in the car on the way home, then again on the sofa, then transferred to bed and slept until 4 am! I only ate about half a sandwich and a small (tiny) cake. No wonder I felt rubbish! This morning, I'm still in bed but am perking up after three glasses of water, two cups of tea, a banana and a protein bar.

Have one of those injections to do this afternoon, and I have no Clarityn (is that loratadine?) in the house. Will take a little walk to buy some later.

@TopOfTheCliff wanted to pop on and say you are AWESOME! Congratulations on getting to the end with your joie de vivre intact! X

Thank you @BreakfastClub80 . I would say that in our house fluency in Monty Python and black humour is compulsory. We are highly suspicious of current positive outlook and waiting for something to go wrong. We have gone from dire health, bereavement and assault in the street to full bank accounts, growing fitness and happy family news. It’s a rollercoaster for sure!

Definitely @TopOfTheCliff x

What are other people's experiences of tiredness after chemo? Had my first cycle on Thursday, was tired and a bit drained yesterday. Today I feel like I've been hit by a truck. My port is hurting and I've got terrible heartburn, so I don't fancy eating. Please tell me I'll feel better tomorrow...

Heartburn can be utterly debilitating. Did they give you meds for it? If not, over the counter stuff will help and ask for prescription asap. Greek yogurt any good? Can’t help on port as had a PICC. Imagine it may settle a bit? Hit by truck feeling - you have had a really challenging time getting to this point. Rest. Rest some more and hopefully feel a bit better tomorrow

I woke up at 6pm!!! You just have to go with it. I feel the first three days are ok but after that you can sleep anywhere at at anytime. Get some gaviscon for the weekend. The reflux is unbearable and the the diarrhoea. It’s all fun and games☹️

@BatshitCrazyWoman so sorry, my first week is pretty awful, mostly tiredness and diarrhoea followed by aches and pains. Awful reflux and no taste. I personally write off a week then play it by ear for the second, and I’m back to normal by the third but it depends on what regime/cycle you are on. Good luck x

I don't have diarrhoea, thank goodness! Just tired beyond belief, and the reflux. I've bought some Gaviscon, and they said they could prescribe me omeprazole, so will be contacting them tomorrow. The acid reflux is stopping me eating, which isn't helping with the hit by a truck feeling! I'm on two weekly cycles, so I'd like to feel better a bit before the next one.

Hi everyone, just recovering from my first docetaxel on Monday. Been suffering with some diarrhoea since Friday. Is it worth taking Imodium or just getting through it and staying near a toilet?
@BatshitCrazyWoman i find I’m absolutely exhausted for a few days after steroids then turn a bit of a corner. Trying to fight the tiredness just seems to prolong it for me, so make sure you rest up.

I’d never felt tiredness like it. I’ve only had one round of chemo so far but the hit by a bus feeling sounds familiar.

I think part of mine was drug related - they said the drugs could make me feel totally wired. The other part anxiety and stress and overwhelm. Fear of the unknown.

I found that the day after and also day 2 I was best in the mornings. And got the tiredness slump at around 230. So had to take myself off for a nap/lie down.

@Nomorebear just take the drugs! There is no advantage in enduring side effects like diarrhoea, nausea or headaches. I found if I got dehydrated it triggered awful headaches that made me cry.

I am a big believer in taking the drugs. I have been given some anti sickness but seem to suffer ongoing with low level nausea most of the time. Currently been given metoclopramide. Any thing I should ask for that you have experience of?

@Nomorebear yes take Imodium. The nurses gave me the off brand stuff but it’s the same. It’ll help you keep something in for a few days before it gets better. Do talk to the nurses if you feel awful.

Same with metoclopramide. If you can take it, do take it. Just off to get mine now so o can actually eat some lunch. Feeling awful today!

I have taken the drugs! Don’t know why I was being so daft as I mainlined anti-sickness at every opportunity.
@somewhereonthe517 i moaned about constant nausea and kept getting prescribed different drugs to see if anything helped, so if it isn’t working I’d let your oncologist know.
I hate these few days when everything feels horrid. At least I might digest my lunch today, even if it tastes vile.

Can I ask if food just tastes horrible for a few days or is it for the full treatment? Similarly, are steroids in bursts or the whole time?

I have my mastectomy this coming Friday and will start my chemo a few weeks later. It’s good to learn from you guys altho I’m more anxious about the chemo experience than more surgery tbh.

To be honest, some things taste a little weird still (I'm coming up for week 4 of 12 Paclitaxel infusions) but it was definitely worst in the first week. There are lots of things that still taste good to me. I am enjoying plainer food more than I usually do, though - potatoes are great, eggs are great, steamed veg is great. Tomato based things taste a bit weird. Water tasted pretty weird in the first week but now I drink it filtered and with ice cubes and it tastes a lot better cold!

I'm mostly affected by the steroids for the first 24-36 hours after infusion. The day after chemo is super productive and I get a lot of work done before the fatigue kicks in on day 3. By day 4 I am on the up again. This is a weekly cycle though so will be different timing if you are doing a dose dense regimen. I expect the steroid timing will be similar though.