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!).

@AimlesslyPurposeful

Aimlessly You've had (and are having) such a crap time. Have some more

The tree is called Thor Ulfbjorn. It has to be something Scandinavian as it's a Nordmann Fir, although last year we had a Norman.

Ratty so sorry to hear about your friend. There is a thread specifically for those supporting loved ones with cancer here. You may find this more useful.

Churchill wanted me to do tests this week with a view to starting chemo on the 21st... not the greatest timing. I've asked if I can push back a week otherwise I'll feel absolutely crap over Christmas. Weird that I can get all tests done at the Churchill except an echo, for which I have to go to the Manor. I've never had an echo before..

Thank you everyone I’m fine though. I accept it and there’s no point being miserable or cross. I just want to do what I can while I can.

Had a funny moment earlier when Amazon sent me a list of books they think I’d like based on my purchases. There were a few I thought I’d like then remembered I wouldn’t have a chance to read them all and felt a bit deflated.

But generally I’m fine. Telling people hasn’t been fun and there have been quite a lot of tears (Theirs not mine) but have told friends they’re not allowed to be glum and we’ve had lots of laughs. A touch of gallows humour I suppose but it’s not an unhappy time.

I actually feel lucky to have got the news now with all the lovely distractions Christmas brings. Mid February and I would have been far more miserable.
Also pleased that I am well enough and have time enough to sort things out and make things easier for my family once I’m gone (Sackfuls of clothes have gone off to various charity shops and I’ve cleared out things that had sentimental value to me but won’t do to them so they don’t have to sift through it all.)
Going to see an undertaker and arrange my funeral so they’ll just have to turn up on the day.

Not everyone gets the chance to tie up the loose ends so I’m very fortunate really.

Aimlessly you’re right about enjoying the time you have left - that’s all any of us can do really. I admire your attitude

TQ - I’ve had an echo. It’s nothing to worry about at all. You just lie on your side and have a gentle ultrasound over your heart area. No prodding or poking or pain. Good luck!

Aimlessly well done on all the sorting etc. I'm glad you're still laughing with friends :)

Lovely tree TQ. Good luck with the echo. As Simmi says, it's just an ultrasound and not at all invasive.

I ended up in A&E again with this bladder infection. They think it might be irritation/inflammation rather than infection. Very annoying, but on the plus side all my bloods were normal and my chest x ray was unchanged from the other day, so at least I'm not brewing any other infections. I think I'll have to stop the chemo tablets until I've seen my oncologist.

Waving to everyone.

Oh Aimless I forget how many of us are terminal on here It's the little things that get to me too. I've just ordered a 2019 diary and wondering how far I'll get through it

That tree is lovely TQ! I think the coloured lights look better than blue would. I think everyone who's having chemo near Xmas wants it pushing back and the nurses said to speak to the oncologists as soon as possible otherwise they don't have the space to get everyone seen to the week after Xmas

Leslie can you ring your oncologist today to ask if it's ok to continue your chemo tablets? If your bloods are fine he might give you the go ahead to continue. Hope you feel a bit better soon

Yes, I've phoned and I'm waiting for them to call back with a decision. I haven't taken my morning dose yet.

Hopefully you'll get plenty of use from your new diary

Thinking of everyone who is having treatment this week or feeling shit from recent treatment.

Leslie fingers crossed you can carry on with the tablets. If you've only just started taking them presumably it's something else that's causing the irritation..?

Twitter, thank you so much for your kind wishes, and signposting to the support thread...both much apprecited!

No tablets until I've been reviewed by the oncologist, who is fully booked this week. I'll have to try and beg for an appointment on the day!

Oh that's rubbish Leslie, can they not give you a telephone appointment instead of making you wait?

Ended up in a&e with cellulitis covering my left breast(the cancery bastarding one)and the whole of belly and sides. So yay oral antibiotics. More tablets!!!

But I did find out that my hb is only 86(before all this shite I was at 135) and as a nurse we would transfuse people at 85 or below. So this is why I'm so short of breath and tired all the time.

Off to addenbrooks tomorrow for my echo with dye. Hoping I can make it, 2 hours, 3 buses each way on my own. I'm really scared but I've got to go.

Christmas lights are mulitcoloured and should twinkle.

Goodness that's a long trip Pandora, especially when you're so unwell. Can you not get hospital transport?! Also worth chasing up a blood transfusion. I hope the cellulitis clears up quickly. You're really having a grim time of it

Sadly not purple. My oncologist is only available on Wednesday anyway. Never mind. It's just made me feel a bit wobbly again having to go in and having problems in the first cycle. I hope he won't say I have to stop

Hugs and and biscuits to all (I am not putting the symbol here for that)

My urine test went off on Thursday from GP surgery, couriered to the local hospital and then onto Belfast and onward to a lab somewhere in England.

So have to wait on the results from it, they will be 3/4 weeks and then endocrinologist will consult with GP again, it's highly suspected I have a tumour on my adrenal glands. I have the classic triad and other symptoms. My last urine collection was way off the scale. So nothing happening until those results are in.

"Approximately 95% of adrenaline-secreting tumours are located within the abdomen, and of these, 85 to 90% are in the adrenal glands. Approximately 10% of pheochromocytomas are bilateral (i.e. in both adrenal glands). Pheochromocytoma is sometimes called the "10% tumour" because approximately 10% are bilateral (i.e. in both adrenal glands), 10% are found in children, 10% are genetic (i.e. inherited), 10% are cancer, and 10% are found outside the adrenal gland (i.e. paraganglioma).

So once the test is repeated and still indicating something is there that shouldn't be, scans and surgery. I'm lucky its a good prognosis.

Sorry you've still got a while to wait for a definite diagnosis smurfy

Goodness, there’s not a lot of cheery news here today. So sorry

Pandora that journey sounds arduous! Do you think a friend or relative would take you if you asked? I know asking for help is hard but many people are more than happy to help. Hate to think of you going alone.

Leslie - So sorry to read that you have an infection having just over bloody pneumonia! It must feel like you get rid of one thing to make room for another! So frustrating!

What an awfully long wait Smurfy. So sorry. You probably know now that the wait is worse bit. Just have to keep yourself distracted and stay away from Goggle. Hopefully everything will be fine

Purple - I know exactly what you mean about the diary. A lovely friend gave me a lovely Wildlife 2019 calendar and diary and I wondered the same the other day. I’m very sorry you’re going through this

I don’t know if others with a terminal diagnosis do the same but I try to find things to be pleased that I’m going to miss
. I’m glad that I won’t have to make the decision to stop dying my hair and embrace the grey!
I won’t have to buy sensible shoes!
I won’t experience people speaking down to me because they think I’m a doddery old woman (Although I might have ended up a doddery old woman but that’s another thing I don’t have to worry about).
No false teeth!

Of course there are wonderful things and milestones that I’ll never see but I can’t let myself think about them. I think there’s a touch of the Polyanna’s about me but Not focussing on the negatives does seem to help. x

Oh @Pandoraslastchance I wish I was closer to drive you

Hi. Can anyone tell me about their experience of 'thickening' around the Areola? This is something I've been telling myself is just part of wear and tear, but I mentioned it during a smear last week and now have an appointment at the breast clinic next week. I've been trying to put it to the back of my mind but we lost a friend younger than me to breast cancer very recently and my DH is quite preoccupied with it - very unlike him. Anyone got any good news, at any rate?

Sorry Steven I have no experience, but you're doing the right thing getting it checked out. Good luck with your appointment

Aimlessly I'm glad you're finding things to smile about :) I've usually been quite Pollyanna-ish myself so I'm hoping that will come back soon.

In the meantime my GP has prescribed an antidepressant which I'll start at bedtime. It will take a couple of weeks to work, but it might make me sleepy. Medics keep saying that like it's a bad thing, but I'm quite happy to sleep! At the moment I feel like I'm just biding time between sleeps, to be honest.

KeepCalm how are you today? I hope you've managed to rest a bit today!

Leslie - I think the anti-depressant will cheer you up a bit. I take a very low dose of Sertraline each evening and I think that’s probably helped some way to stop me having mad panics.

Are you able to get out or do you just feel too tired?

No. I haven't really been able to go out much. And I'm not sure where I'd go. Everything feels so pointless.

Sorry. That was so miserable.

Leslie don’t apologise. Your Pollyanna moments really help me and I’m sure other people. You are not supposed to be able to keep that up 24/7. I know it’s easy to say but please try to be kind to yourself.

@WhatWouldLeslieKnopeDo am flat on my arse on the couch off my nut on cocodamol just waiting on kids to go to bed so I can crawl to mine.

This is the worst I've felt since this shit began BUT in light of all things I'll shut the feck up complaining x

@MyNameIsNotSteven am so sorry I've BC but no experience of this. Hopefully someone with more knowledge than me (not difficult) will be able to help

Sorry to be reading about the tough times for rather too many of us at the moment.

My main bloods were fine, but the BCR-ABL (pesky Philly gene test) isn’t back. The last one hadn’t reached the required score, if the next one doesn’t then they may need to switch to s second-line drug. Appointment in 6 weeks time, when the result should be back.

Cyst will be re-surveilled in a year. Gallstone (new) is firmly in gall bladder, so will be ignored. My consultant was quite perplexed about the outcome of the colon outpatients (until ‘oh, you saw a surgeon, that explains it’) and will refer me for a non-urgent colonoscopy (GI malignancies ruled out by scans, bloods and stable weight, but inflammatory conditions to be checked) once they’ve sorted out whether I switch main drug. Lots of notes to myself in next year’s diary already!

Really hoping that peeps do need and use their whole 2019 diaries.

(I’ve been asked to start one recording diet and poo, as a month or so of data might inform to poo doctors. I wonder if there’s a ‘special tastes’ one for this sort of thing.....)