CANCER SUPPORT THREAD 60! Here we are again... join us if you have any sort of cancer (or if you're waiting for cancer test results)

[WhatWouldLeslieKnopeDo]

Welcome everyone to a shiny new thread :)

It's a club nobody wants to join, but if you need us, you are more than welcome. If you're waiting to find out if you have cancer or not then pull up a chair. We hope you won't need to be here long, but we are here as long as you need us. And if you do have cancer then this is the place for you. Swear, rant, scream, laugh, cry... someone will have at least an inkling of what you're going through!

We only have one rule, which is do not Google. Though perhaps we should update that to please Google responsibly as few can resist completely!

I hope this thread will be a source of support for all who need it

Our previous thread can be found here

OhWhatALife so sorry to read that,

I’m awaiting results of MRI scan of my liver (I have leukaemia, and had a CT scan from neck to knees as belt and braces, but they needed a closer look at my liver. There’s a good chance mine is a cyst, but I don’t know yet. I googled (responsibly!) and found lots of info on The Liver Trust website. There are lots of possible causes.

Waiting for results is a very trying time.

I didn’t tell anyone until I had a confirmed diagnosis for the leukaemia. But my DC are teens, and didn’t need additional childcare. Can you come up with a plausible cover story? Perhaps an important appt connected to ME/CFS?

for you all this evening ... I’m trying a new recipe for cranberry and pistachio biscuits

Hello OhWhatALife. Sorry you find yourself here. I hope you don't have too long to wait for a date for the biopsy.

I had my lung biopsy today. They couldn't do the area they intended but they did manage to get something. I feel ok, just a slight discomfort. I was repeatedly warned how high my risk was for an air leak so it is a blessed relief it didn't happen. Every cloud has a silver lining

Leslie you do an amazing job at managing this thread, and remembering who is doing what and when
I hope you are feeling more comfortable and have managed to catch up on some rest.

Hello to everyone else.

How are you doing Leslie? I hope you're feeling more comfortable and just generally better now that you're at home again.

You're very much in everyone's thoughts here - whether you're posting or not. Hugs to you xxx

Hi everyone. to you all. ohwhatalife I'm sorry you're having to contend with all of that as well as the worry of how your family will react. I hope you have a really good friend who can do some covering for you and hold your hand while you get some answers. I'm glad your biopsy went better than you expected wombat and hope it isn't too sore. Sending love and cheese Leslie with hopes that being back home is making you feel better. You are, as everyone else has said, so lovely and supportive to us all; I hope you feel the good vibes back. I must say that the first time I saw 'palliative care' on my notes, I totally shat myself, even though I knew the score. Sometimes the reality of stuff just ambushes you doesn't it, especially when you're feeling physically worse than usual. You put up with so much with good grace and good humour, it just seems bloody rude that you have to face an unexpected roadblock. Take it easy Excel Queen (pivot tables make me cry). x

Hi all, thank you so much for your thoughts. I’m super brain foggy today as not slept well and using my phone for this so it’s difficult to remember or go back and check names.

I will have a look at the liver trust website in a couple of days when I’m more with it, thank you for that. Ds is 12 and fairly high functioning and can be quite on the ball with the things and noticed the massive bruise on my hand from the blood tests so I’ve told him that I’m having tests done to do with the DVT and that it might be my appointments will mean grandma will get him from school (I also distracted him with a game he wanted at the same time ) he seemed ok with that.

I have a really good friend that has said she will come with to all appointments if she can and she’s been really amazing so far. I also have a friend I’ve told that had throat cancer and has been a year in remission now and he has offered to help too.
I think I’m going to keep quiet with my family until I’ve got the biopsy results unless I have to be knocked out for it in which case I will have to tell my mother so she can help with Ds.

I’m not greatly up to speed on everyone here yet but it’s lovely how supportive you all are for each other. I don’t know enough about all the terms used and all the processes to offer any advice but really feel for everyone’s situation.
Leslie I’m glad you’re feeling more comfortable now you are home, I find hospitals really claustrophobic and way too hot, having your own bed, space and comfortable surroundings is always a good thing.

Purple, about chemo over the holiday period, my schedule meant I should have had chemo on New Year's Day but it was moved to a few days later. It may vary a bit by hospital but I'm sure you won't have to go in on Christmas day. Hopefully you can enjoy a gentle, low-key time at home.

I know lots of people are waiting for results or coping with the on-going rubbish of treatment so I'm sending good vibes to everyone.

I’m not entirely sure how to word this post and debated whether to or not but you were all so kind with your support.
I had a call from the hospital this afternoon. Apparently there was a mix up with my report from radiology and the person before me. I have absolutely nothing wrong with my liver at all . My head is obviously reeling and of course it’s amazing news but I can’t quite get my head around such a big mistake. I will be asking for an investigation and my heart goes out to the person that my report got mixed up with and it’s very scary that a mistake like this has happened.
I hope my post doesn’t upset any of you but I didn’t want to just not come back on as I really have the upmost respect for you all.
I promise I am not a terrible troll and my normal username starts with ‘narcs’
The information and advice at the start of this thread was really helpful and I really appreciate your support.

You are effing kidding me OhWhatAlife. That is inexcusable

Thanks patara, I was hoping that would be the case

Yes pretty bad. The Dr that delivered the news on Monday has just also called me to apologise but it wasn’t his fault as it was definitely radiology that messed up. I have been assured they now have the correct scans etc and that everything is clear.
I am going to follow up with a complaint as this has to be addressed and hopefully help prevent this happening to anyone else. They obviously can’t tell me anything about the person who’s report got confused with mine but I’m hoping that they didn’t tell them everything was ok before realising what happened.

Ohwhatalife, oh what a mess up, but I'm relieved for you, and as you said, I do hope the mix up was one sided.
This is a kind and thoughtful place, and I can say that even though I had to visit it last year following a breast cancer diagnosis,, I have lurked and watched with admiration the dignity, care and support proffered to all comers.
You needed a hand hold, just as I did earlier this week, and this is what this place does so well.

Really glad your news was good both areyouready and ohwhatalife.
Leslie really pleased you're home now. I've been lucky in that I've not had to be an inpatient apart from 3 nights at diagnosis and 2 for my op 15m later. I'm hoping to it stays that way as hospitals are usually grim in many ways.

Today was my final Thursday of rads... only 4 sessions left! Really can't wait to be done.

Brain struggling again so I'll go, but always here cheerleading!

freddie thank you. I've had sunshine and roses, just waiting for the unicorns... how are you?

purple I'm pretty sure they won't do chemo on Christmas Day as they're on skeleton staff. They're usually happy to jiggle chemo dates a bit to fit around existing plans :)

OhWhatALife bloody hell. That's a screw up and a half. How are you feeling?

nicky we can be palliative pals I find there's sort of layers of acceptance. I think I've fully got my head round it all and then suddenly it sinks in a bit further. Partly I think it's because it's impossible to live constantly thinking I have incurable cancer. Thank you for the cheese. Much appreciated. I had some delicious sheeps cheese today. It had the flavour of manchego and the texture of Cheddar.

LittleGreyCat yay for nearly being finished! Rest as much as you can. I know that's easier said than done with two little ones keeping you busy :)

Waving and sending love to everyone. Happy Friday!

Sorry meant to say wombat I'm glad it went OK and no air leak! They have to give all the risks but sometimes they can be a bit overzealous about it. Fingers crossed for your results do you know when you'll hear?

Hey Leslie Thank you for asking. I'm feeling quite odd but obviously relieved. I spoke with the hospital today and raised a complaint, they were shocked as nothing had filtered through but assured me that this will be followed up and hopefully prevented from happening again. It was definitely human error.

I'm not surprised you feel odd be gentle with yourself as you've had a nasty shock, even though it all turned out OK in the end

Hi everyone, just letting you know I have good news!

My repeat mri on my brain showed that it’s not the sarcoma back! Massive relief.
It might be MS. I have to have further tests.
Hopefully I can relax a bit until my next oncology appointment in January.
Love and best wishes to you all x

Been awol,as in different hospital with no interest. Daughter got transferred on evening to a local hospital as big shiny cancer hub needed specialist bed and dd was lowest priority! Local hospital very mixed experience but kind. Very old very shabby and she is youngest on oncology Ward by about 30 years! We decided to get her transferred there permanently because it would mean she would never have to move mid cycle. ( once the actual chemo drugs administered she's only in hospital because she can't take oral meds and has to have everything else via PORT or else injections) . But not sure if we've done the right thing. She is home now and goes back Wednesday for another 14 days. We shall see. She is dreading it. I am dreading it. Her hair is falling out and because of her pre existing illness we can't wash her hair ( she has no energy at all, even worse with chemo) so it is all just on her pillow and bed. Heartbreaking. Someone asked ages ago about her DLA. Because she is now just 18 she's on adult rules so even though I HAVE to stay with her to provide her care ( hospitals cannot do the 24/7 care I provide stupidly enough as they don't have enough staff, previously on an admission for 4 months with her pre existing condition we investigated funding for a HCA on Ward just for her but CCG wouldn't fund so I did all meds via her NG tube, all feeds, all personal care just as always). Trying to get CCG tomthink about funding again because I honestly think I may die from lack of sleep. In hospital I get 3 hours max because of her vomiting, her distress and just when we've both just dropped off somebody comes tomtake bloods or do obs or to,clean the room or ask if she needs water! Total nightmare. It's so much worse with her ore existing condition but the can't make concessions as they have to get the cancer. This is so hard. Plus I've just had annual check up letter for my own lymphoma and my DH has just had his annual health check ( because he had a TIA) came back as possible prostate cancer!!!! Life continues to throw shit at us... hope everyone else coping at the very least. I've been watching ( sensibly downloaded some stuff) alias grace and really liked it as an antidote to modern life!

greyboot what fabulous news!

greyboot Fantastic news! for you [and/or me!]

carbuckety your life doesn't get any easier does it? I don't understand why your DD is the lowest priority but maybe being closer to home is better psychologically. I don't have any wise words or marvellous solutions, maybe some mindfulness / relaxation pods on your ipod or similar, so that even if you're not sleeping you can get some form of rest and relaxation?

Sending to carbuckety as I have nothing useful to say. I hope being nearer home will help a bit. It sounds like she's too unwell to get the benefits of being in the teenage unit anyway? fingers firmly crossed for your check up and DH's prostate concerns

Greyboot what a relief. Though MS is no walk in the park either. Fingers crossed for your others tests too

Love to everyone

Thinking of everyone I hope you're all OK

I've got my first lot of radiotherapy in the morning and then my pre assessment ready for chemo on Monday. Weirdly I can't wait to get started, it's awful knowing I have this growing inside me and nothings getting done about it. At least tomorrow I'll be on my way to hopefully getting fixed.

I've been super busy trying to get everything sorted for Xmas as I'm guessing I won't have much energy in the coming weeks. Just a few more presents to wrap and then I think I'm done. Although I'm sure something will crop up that I've completely forgotten about

How are you doing Leslie? It's been very quiet on here the last couple of days, I'm hoping no news is good news and everyone's doing ok

I'm away at a work thing in the incredibly glamorous environs of Heathrow. I am knackered and could do with just slobbing out on the bed but if I do that I will fall asleep. I need to get my arse off this chair in 10 minutes and venture outside again.

Everyone at work is being lovely. Hope everyone is OK. I get my scan results on Monday. [anxious]

Good luck tomorrow purple

Well done on your Christmas organisation :)

I'm alright thanks. Chemo tomorrow hopefully.

My port wasn't working yesterday so I hope it will have sorted itself out! I have to have an x ray in the morning to check if it's in the right place.