New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

Am doing okay, sleeping a lot and eldest kid has a sick bug so hoping I don't get that!

Leslie I guarantee that both your old kitchen and your new one are 200% nicer than mine!

The cream isn't really making any difference sadly. And I've had to do a fair bit of washing up, cleaning etc so I haven't been able to avoid hot water. My cleaner is is not really cleaning - I need to deal with that - and DD buggered off to Edinburgh on Thursday. How very dare she have a life of her own!

I'm hoping my bulky uterus is fibroids too Flipper!

To give you a laugh tonight lacies... I've started my bowel prep now and dashed to the loo only to come back and find my dog drinking the prep argh not only am I now drinking a drink my dog has had her tongue in I'm also waiting to see how long it is before she starts dashing to the loo!

Haha zebra sorry but that made me chuckle. Sadly it will be you having to clean up any accidents too... I hope your dog has a strong stomach/didn't actually drink any. My cat drinks out of my glass of water by my bed given half a chance. I had to buy a carafe thing with a beaker as a kid just so I didn't have cat dribble in my water! Grim!!

I hope you are feeling better today purple

New kitchen sounds good leslie I hope you are not too disturbed by lots of banging & crashing as it is being fitted and still manage to rest ok.

Good luck 2mo TQ fingers crossed they will just reduce the dose slightly rather than stop that particular med completely...

BOF I am sure it won't notice if your hair does thin slightly, but totally get that it is annoying and I would be pee'd off too. Is a veil or carefully placed flowers in the hair an option at all if it does thin more than you feel comfortable with? Your dress looked gorgeous in the pic you posted ages ago and am sure you will look stunning no matter what. Annoying it is something you have to contend with though...

I am in awe of your quick draining ability MrsT day 5 post op! My side is still sore, I have my radio appt on Tuesday, so am hoping being banged where the op was will not change anything there.

Waves & hello to everyone. I hope you are comfortable after your ops pandora and keepcalm .... Are you all organised for yours ranout now? Good luck for Wednesday X

That should have read beaker as a lid (not kid!!)

Good luck tomorrow TQ hopefully it's nothing to worry about

I hope your new kitchen doesn't take too long to fit and isn't too disruptive Leslie. I hate having workmen in, I never know what to do with myself

I'm feeling slightly better than I did, still struggling getting up the stairs though. I'm seeing my oncologist tomorrow to see if he's managed to get me on a trial anywhere although it doesn't sound likely

purple I know what you mean. Anyone doing anything in my house makes me feel awkward and lazy. Like I have to find something to do so I don’t look like a fancy person who just sits around all day while other people are working.

Keeping everything crossed for a trial for you. I know that’s so inadequate. I just can’t tell you how much I want you to have some good news.

@likeazebra I nearly snorted my vino at your dog drinking your prep!
@WhatWouldLeslieKnopeDo new kitchen sounds fab! Mine is dire, I'm always yelling "I need a bigger kitchen"! I love cooking and food.
Good luck tomorrow @TwitterQueen1 Fingers crossed you get a plan you want. Do you think they can recommend a different cream or oil?
Oh man @KeepCalm Sickness bug is all you need.
@Mrstraveller I'll be checking out the lingerie after my mx on Wednesday. I've been very spoilt as my hospital gives you one bra free and any others you want from their selected supplies are at cost. I thought I'd make do with the one, wait for the swelling to go down and then see where I'm at!
To anyone I haven't spoken to today, waves!
On a please can I have some help note! .... I'm due to go for surgery on wed at 7am, my DH and kids will have to take me. They can't come through to the ward (which suits me) what would be best for the kids, ie just drop me off and not get out of the car or walk to the ward. I want to make it as easy as possible. I'm tempted to just be dropped off as that's what they did for chemo and then they just picked me up and I was ok. Any advice?

My drugs are enzyme inhibitors - they stop the enzyme in the body that repairs cells (to target the cancer cells) but unfortunately they cannot discriminate between 'good' and 'bad' cells. The drugs are stopping my 'good' cells from repairing themselves, which means my hands and feet are failing to repair themselves and to grow new skin. So lesions could become open sores etc - if they can't stop that by reducing the dose I will have to stop the drugs.

ranout I would just get out of the car alone - I find it distracting with other people around at that point - especially children. It's also a brief chance to just have a few quiet breaths. But it's whatever works for you

ranout

I know every hospital’s different but I think it might be better for the children not to walk to the ward. On the day case unit I was in relatives weren’t allowed past the reception bit and we all just had to wait on our own. There were barely enough chairs for the patients!

Noodles. Nurse who saw me today said this draining thing isn’t an exact science anyway and sometimes the body can send more fluid to the area because there’s a foreign body there. I’m still a weird combination of numb and sore and still have one drain in...She took the one out that had been below 30 mls for the last few days....

Thanks @Mrstraveller and @TwitterQueen1 my gut feeling is to just get out of the car and get on with it, as that's what I do!
@TwitterQueen1 I'd love to suggest something for your hands and feet. Bet you've already tried it but, sudacrem?

ranout. I’m the same. I’m rubbish at conversation first thing in the morning anyway. Once I was on the ward and things started happening there were forms to sign, bloods to be taken etc. so I kept getting taken away from the main area anyway. Probably better for your children to come and see you after the surgery when you will be sitting up drinking tea and eating toast.

TQ hope your team have some suggestions and reducing the dose works.

@ranoutofquinoaandprosecco I agree and go it alone. If you need company whilst waiting, we've got you.

My nurses were lovely, absolutely lovely and realised when I needed a moment or when to chat. I hope yours are too.

@likeazebra apologies for complaining re lack of poop when you're on bowel prep

Good luck with the kitchen leslie and wishing you a fruitful appointment purple

Love to all else, I'm trying to keep up but still a tad spaced ...

Thanks lacies for your replies.
Hope everyone is ok today and no unpleasant side effects.
Had a lovely morning nap and am now munching cheese on toast with salad cream!

Ranout whenever I've been to the ward waiting for surgery there's hardly any space so you're probably better off getting dropped off. Maybe get your DH to take them for breakfast as a treat somewhere to take their minds off you going for surgery?

How did you get on TQ?

I've seen my oncologist and there is a possible trial in Newcastle but my kidneys aren't functioning well enough at the minute so I have to go back in 3 weeks to see if they've improved enough to get on the trial. There's nothing guaranteed but it's better news than I was expecting

That's good news @purpleunicorns. Hoping your kidneys start behaving themselves.
Good idea about taking them for breakfast, their both going on play dates after school so I think they'll be more interested in that, which is fine by me!

purple I really hope your kidneys sort themselves out so you can get on the trial

Mrstraveller good that you're one drain down :)

likeazebra I hope the colonoscopy went well.

Waving to everyone

I've been asleep most of the afternoon. The workmen weren't at all disruptive. The district nurse visited and I'm getting an even fancier mattress! This one isn't providing enough/the right support.

Ranout

Will be thinking about you tomorrow. Let us know how you are getting on when you feel up to it.

purple. Hope your kidneys improve
Xxx

Ranout. I think I am getting confused with the days. Is it tomorrow or Wednesday you are having your op?

An exhausting day doing nothing. Hospital rang to ask if I could go in earlier - no problem, I left at 10am, got there at 11.
Was assessed and after consulting trial protocols, the decision was made around 12.30 to continue but on a reduced dose - YAY, very happy with that.
But I didn't leave until 4.45pm and got home at 6pm.... waiting for the pharmacy to send the reduced dose drugs. I KNOW I'm being unreasonable but I did find the wait very hard and actually quite stressful. I was told 1.5 - 2 hours initially, then, when they weren't ready, another 20 minutes, then another 20 minutes. They said come back tomorrow but that's a minimum 2.5 hours for me... But of course everyone is important and waiting. Anyway, enough moaning. I am so happy to still be on the trial.

But then I had difficulty absorbing the changed instructions. I used to be intelligent . I had to ask the nurse to write it all down because it's now Mon-Fri, not every day, one drug is the same, the other one is different requires one of the 150mg and one of the 100mg twice a day, no food for a minimum of 2 hours beforehand and at least one after.... and I'm resentful because it seems I can no longer absorb simple instructions.

Purple I'm going to keep everything crossed for you. A trial would be very good news. KIDNEYS - SORT YOURSELVES OUT!

@Mrstraveller surgery Wednesday, get injected with the radioactive stuff tomorrow! Ordered myself a blue tit necklace for the dye experience!
@TwitterQueen1 I think they should write all instructions down, everything changes and you've got the normal mental load to deal with as well. I used to have to set alarms on my phones to remind me to take steroids etc! I'll do the same post op for painkillers.

TQ what a day. I'm glad you're still on the trial. But all the waiting is grim, especially after the anxiety of waiting to find out if you could continue. You are still intelligent. You're dealing with an awful lot of rubbish right now and it's taking up lots of brainpower. Very sensible to as for it to be written down rather than getting home and realising you have forgotten or are unsure.

ranout good luck with the radioactive injection :)

I am in a big grump because I really want a lovely ice-cold chocolate milkshake. But I know it would make me cough

purple good news about the trial. I was keeping my fingers crossed for you!
TQ also glad you're still on your trial too! My Brain seems to have stopped working also, don't beat yourself up! Blame the treatment.

Leslie Wish you could have a milkshake without coughing. Good luck for the kitchen remodel! I love me a good kitchen.

Waving at everyone else

I'm doing okay. These days in hospital are long and strange. I'd love to get outside for some fresh air! Chemo every day is a bit hard on my kidneys so I look like a giant marshmallow man with swollen everything. I'm okay though.