CANCER SUPPORT THREAD 66 for those with cancer or awaiting cancer test results. Rant, rave, laugh, cry, joke, scream - whatever gets you through the day.

[TwitterQueen1]

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you have a loved one with cancer you can get support on a different thread here

For old and new posters it's very helpful if you (re)introduce yourself in your first post with a summary of your diagnosis (chemo brain is a real thing and my memory isn't what it used to be!).

Namechange sorry you're awake too. And that you were let down after chemo the steroid brain whirring is really hard to switch off once it has started!

the steroid brain whirring is really hard to switch off once it has started!

It definitely is. Generally am struggling to get my brain to do anything so maybe I should be pleased

Oh and please do post whatever you need to Aimlessly. Even if it's the bad stuff. The thread is got everyone/everything, not just the better stuff. I'm not getting out of bed much either. I go downstairs to the sofa once a day, then back up at bedtime. So at least I get a change of scenery. And my lungs get a tiny workout doing the stairs. I'm impressed you made it to the supermarket. I hope you got some nice treats :)

Oh and please do post whatever you need to Aimlessly. Even if it's the bad stuff. The thread is got everyone/everything, not just the better stuff

Yes. This times eleventy billion. Please don’t feel that you can’t or shouldn’t.

Hi Namechange

Thanks for replying. How are you?

He said I could try another chemo if I wanted. It would be given over two days every two weeks but it’s know to be less effective than the two I was on and that all my hair would fall out and it’s unlikely to work anyway.

I have my birthday in Feb and youngest DSs birthday is in March and if these are the last ones I see then I don’t want to look like I have cancer. I so rarely have my photo taken but I think I must now so my boys have happy memories of our last months and I’d like to look like me as much as I can and not feel ghastly due to chemo.

I’m of the opinion that I’d rather have less time left but feel and look well than prolonging things feeling awful and stuck in bed.

I don’t know how others feel in a similar situation but that’s how I see things. x x

That makes sense Aimlessly. I'm trying my new chemo as my oncologist reckons it could work for me. But it wasn't as straightforward a decision as before. Luckily the side effects aren't supposed to be too harsh, or perhaps I wouldn't have agreed. It sounds like your oncologist doesn't think there's any potential benefit for you, so it makes sense to feel as well as possible. It's a hideous decision to have to make and you can only do what feels right for you.

And yes, take photos! Lots.

Hi Chicken my symptoms were irregular bleeding and a heavy leg, they kept giving me tablets to stop the bleeding before doing a scan which was how I found out

Noodles that's fantastic about the shrinkage! I hope your daughter has an amazing birthday, I haven't been to London for years

Welcome Fluffy, there's lots of people on here with breast cancer so hopefully you'll get lots of answers if you have any questions when the daytime people are awake. I think most of us are on steroids who are posting right now which is why we're all awake at silly o clock in the morning the waiting is always the worst, once you have a plan you'll feel much more in control

Leslie I've read your other online post and didn't reply as I don't have any magic words to help you feel better other than they wouldn't give you more treatment if they didn't think it would make a difference. These tablets you're taking could keep you going for a year and by then they may have new treatments to try.
I get what you mean by a part of you just wants it to be over, the constant problems, hospital admissions and feeling rubbish do seem never ending at times but just try and take something positive out of each day. At the minute I'm happy that my Xmas presents are almost wrapped so that's one thing ticked off the list!
Could you have a bit of uti with constantly needing a wee? If you can get that sorted you'll feel a bit better
Would this be any good for your nose to stop it drying out as much?
I want to fix everything for you but I can't
Although I can google so if there's anything you may need me to find I will have a good look
Hope you manage to get back to sleep, my kindle helps to distract me when I can't

Aimless what a bloody awful decision to have to make. It sounds like you have good reasons for having made the choice you did.

I struggle with the photo thing because I hate how I look right now but I know that my family will look at photos now and not see the bags/puffyness/thin hair/wobbly belly etc that I see, but instead just see someone they love. As I would the other way around. So I make myself be in photos even though the results make me feel iller than the chemo! So I agree that you want tons of lovely photos of you and the family enjoying yourselves. I hate the phrase “making memories” but it is really what we should all be doing (regardless of health) rather than hoovering and stressing over nonsense.

purple we’re all on team steroids tonight I think! Well most of us. I had a cry in the DTU today as I thought about all the horribleness that is ahead of me and wanted to stop it all right now and just somehow switch off. Then ten minutes later I’m wanting all the treatment and all the time I can get. There is no knowing for me when my emotions are going to change 180. Is that the right number of degrees? Should have paid attention in maths really.

Oh Aimless I'm so sorry. It really is shit isn't it? I was numb when I first found out and found telling people was the worst you post and rant on here as much as you need to, you're certainly not alone in this as there's a few of us who are in the same boat. Sending you a massive hug

Thanks for replying Leslie

DP very upset and on the brink of tears all day. DS3 is being very brave but he’s very mature and sensible and is seeing two different counsellors at school and knows he can talk to them whenever he needs to.
DS2 has Aspergers so doesn’t really get upset. He’s more likely to be angry about a sad situation than feel sad.
DS3 is touring S America (He bought a one way ticket and said he’ll be back when he runs out of money) he said he won’t be back before Christmas. I’m not going to tell him as I don’t want him to cut his trip short as this is a once in a lifetime trip. Once he’s older and has more responsibilities trips like this will probably be impossible.

I have no siblings or parents just a lovely Aunt but DP phoned her to tell her as I just couldn’t bear to. She cried when I told her it was back so telling her this news would have upset her and I thought she’d be less emotional if DP told her.

It’s difficult to know who to tell. I’m friendly with all my neighbours and they all know I have cancer and all have offered support (One neighbour rushed one of dogs and DS3 to the vet when I was recovering from op in Basingstoke and DP was with me. Dog was fine - Just DS3 panicking) and have been lovely. When they ask how I am I don’t know whether to tell the truth or just be vague but give the impression all is ok?
It’s awful upsettting people plus I think they probably feel uncomfortable and don’t know what to say.

Do you tell the truth when people ask or just tell family and close friends?

I’m still awake and feel a bit emotional having read your posts Aimlessly and Leslie. It’s so shit it really is.

I think I’ve kind of resigned myself to being awake all night.. just been downstairs and had some weetabix, scotch pancake and cup of tea. Will have crumpets, butter and golden syrup about 7 am before steroids. I know I will be off food come Friday/Saturday for about a week. Also go off tea and don’t even like the taste of water.

Have to be at hospital for 9.30 am appointment. I am also wondering whether I will be given the results of a lung scan they did about 3 weeks ago. Also a worry.

Sorry to hear your news Aimless that's shit. .
Welcome Vox and Smurfy. Fluffy I found the normality of work and worrying about that instead of cancer really helpful. Just make sure to take time when you need it unlike me.
Leslie I don't think anyone can accuse you of being a drama llama! Anyway you are perfectly entitled to a good rant/worry/cry/scream. Glad you have got your mum there to support you.
Namechange sorry your company let you down and hope you get some sleep. You too MrsTraveller.
iVampire shocking lack of interest in deranged poo - my doctors are obsessed (which is what you want in a colorectal team!).
Had my colonoscopy today. Nothing suspicious found . Have appointment with consultant in six weeks but presumably just to review. Have to say drugs were excellent and whole thing not half as bad as I'd been building it up to be in my head. Certainly a weird feeling watching your colon on screen while completely off your tits! I also may have booked a holiday while under the influence. A trip I've been dithering about for a while so not completely out of the blue but had a possibly slightly drug induced oh fuck it moment and went for it.

Sorry Aimlessly. Cross posted with you wittering on about my middle of the night food intake

Thank you Purple

So sorry you’re in the same boat too. It’s not fair. Such a cruel disease. It annoys me that there are child killers etc living to ripe old ages yet good families are ripped apart prematurely. It’s just not right. x

Aimless so sorry to hear you news. I think I would do as you have decided and opt to feel as well as possible for my remaining time. It's a hideous decision to have to make. I wonder if the reason you are ok for the moment is because when you get a cancer diagnosis, you automatically fear the worst and now you have been given that news, you are just getting on with it. Plus it is hard if everyone around you is crying too. I too am impressed you made it to the supermarket, keep posting and vent here if you need. Leslie is right, it is for all the good and bad stuff and if we can support you, or just be here if you want to say something you don't want to say IRL for fear of upsetting someone, go for it.

Leslie I meant to say in my last post about how tough that frank oncologist talk must have been no wonder you are not sleeping. purple is right to say about getting checked out for a uti as it could be that contributing to your feeling of impending doom. My dad had a uti after his bladder cancer op and it knocked him for six mentally as well as physically. After an extended spell in hospital followed by that chat, it would also be totally normal to feel this way too, but worth checking out, just incase.

I got up to have a deranged poo (TM *iVampire) and the very small dog is now taking up 80% of the bed. How do they do it?

Don’t apologise MrsT - completely sympathise re change of taste and not enjoying anything. Hard to eat when you have no appetite and things don’t taste as they should.

I found vinegar helped. I ate quite a few fish fingers doused in vinegar as they tasted as they should have - of vinegar! Also found adding Rose’s Lime Cordial to either still or soda water made them more drinkable as I could taste the lime. Everything else just tasted odd and too sweet. Even toast tasted sweet. Sadly not in a cakey way but in a dipped in a solution of sugary water way. x

You might like this Namechange

Sorry also X post Aimless. Didn't mean to be tactless. Tough choice on the chemo, although as Leslie says your oncologist doesn't sound convinced it would be helpful. Glad your son is getting support at school. Also just be really hard to have your other son so far away - although as you say there aren't many times in your life when you can just head off like that. I don't know about telling people. I guess it depends who it would help you to know about it.
Namechange that's certainly true about the photos. My husband's mum died of kidney cancer six months after our twins were born. We got to spend their first Christmas with her and have some lovely photos. The twins never really knew her of course but can still look back at granny in the photos.

Aimless yes! That is exactly it. Except there is only one of him and he’s about the size of a scatter cushion. Just a very stretchy and wriggly one!

MrsT I second what aimless says. It is just about finding something that cuts through the weird mouth taste. That is why I drank gallons of pink grapefruit squash & ate grapefruits I think. I also had curries when my mouth could stand the spices and I make a caponata dish from the vegan cook book (Bosh) that is delicious & has vinegar in too and tasted as it should. (You can probably google the recipe) egg & chip shop chips was also what I had a few times when my mouth was really sore.

This is like a sleepover where we all know we need to stop talking and sleep so we can a) enjoy our swimming trip tomorrow and b) do not incur the wrath of our friend’s mum, but we can’t!

Hi Noodles Thank you.

Actually did a fair bit today. More today than I have in probably the last eight or nine weeks when I hardly left the bedroom.

Dr this morning at Royal Marsden, then mooch around nice garden centre on the way back (Had to have a sit down a couple of times. Once on some steps with people giving me looks as they ‘Squeezed’ past me (I weigh just over 8st and the steps were a good five foot wide) Normally I’d apologise and stand up but today I thought “Fuck it. I’m dying and right now I’m struggling to breath so sod you!”
Then to the supermarket as the fridge was empty. and then to Drs surgery to force DP to make an appt with Dr about his sleep apnoea and got him signed up to their wellness clinic. I’ve been asking him for years to see someone about the sleep apnoea but he didn’t so knowing appt is booked feels like a weight has been lifted.

Btw, if anyone is a fellow quiz fan 15 to 1 is on Channel 4 now.

Ha ha Namechange - That’s exactly it! Knowing you ought to be asleep but have eaten too many fizzy cola bottles and Wham bars.