Cancer support thread 62 - here comes the sun (hopefully)

[WhatWouldLeslieKnopeDo]

Good evening

Our previous thread is here

If you've got cancer, this is the thread for you. Introduce yourself and feel free to ask any questions. We also welcome anyone who is waiting for cancer tests. We know how scary it can be. So don't be shy. We will happily hold your hand and hopefully wave goodbye when you get good news :)

Penguins that's such amazing news for you. What type of cancer did you have and when? It's so reassuring when someone gets the all clear.
There's another thread in chat I think asking about bowel screening tests as they've had 3 friends in their 40s diagnosed with it, two of whom have passed away. Well I'm 44 and didn't feel too good about reading that. I guess she couldn't have known and didn't mean to upset anyone.
Adle how did it go? You're half way through now on the iv. That's what I try to focus on.
Mrs hope all went well today.
Lots of love to those waiting for results and praying there's only good news going round.

Thanks all. Dulce I just had lots of lots of tests for cancer including bowel, bladder, kidney, uterus as I have lots of weird symptoms / bleeding. So sorry to hear you've got cancer especially with a 4 year old. I hope they can cure it.

Hope your PET doesn't find anything Purple

Hope you continue to be around for a long time Leslie. I'm hopeful its just hormones and infections now esp with the enlarged adrenal gland.

Fabulous news penguins ! Hope they do get to the bottom of what is causing your symptoms though.

Dulce I saw that thread too. I guess it is good that they are raising awareness a bit and I can see why they want to get tested but I don't think their sample (of 3!) is representative exactly. Bowel cancer has quite a good survival rate and at the younger end this should be even better. I'll be interested in the research into what is behind the significant raise in the number of young people that get it. There needs to be a serious education campaign with GPs too as young people getting it really not on their radar. I went to mine with symptoms, that in hindsight should have triggered testing, at least a year before I got my diagnosis.

Oh really tayotts? What symptoms did you have? The surgeon reckons I had this for the best part of a year before I felt anything. All I had was bad abdominal pain for about 5 weeks. How old are you if you don't mind me asking?
Yes I have read about survival rates being good for younger people, I just feel scared of allowing myself to be too hopeful and get another scare.
I agree testing should be done sooner. But it's all about money in the end sadly.
Pleased to hear you don't belong here penguin - in the nicest possible way of course!

Fabulous news Penguins hope they get to the bottom of your symptoms though

Dulce I'm 39. I had some bleeding but my gp put it down to piles, which to be fair I did have too thanks pregnancy!. I also had persistent anemia but they referred me to gynaecologist for that as assumed it was period related. I then had in February this year what I thought was IBS symptoms for a couple of weeks (triggered by very high fibre foods like pulses) which got more painful and culminated with me ending up in a+e and being rushed into surgery for a bowel obstruction. I'm 39 and have none of the risk factors (i'm normal weight, take lots of exercise and was vegetarian for 15 years and don't eat much processed meat now). I don't necessarily think screening should be rolled out for population but there does need to be an awareness that more young people are getting this so that people with any symptoms are referred (in my case I think the bleeding should have triggered referral for tests) - my gp was very shocked when I got my diagnosis as I wasn't old enough in their book. Hindsight is a wonderful thing though and I don't blame them - periods were the most likely cause of the anaemia.

Wow Tayot how frustrating. I had no bleeding and was told I had a bad case of gastroenteritis for 4 weeks. Eventually someone suspected gallstones. I even saw a private consultant and had an ultrasound which came back normal. It's hard not to blame anyone and I can see where you're coming from but it's also more common than people think and there seems to be a lot of us being investigated for someone else because we're too young. Oh well what is done is done and we have to be thankful we're being treated I suppose. Do you have a Stoma? I got away without one so I'm counting my blessings on!
Hope everyone has a good day.
I feel very icky and have been retching a lot but haven't actually puked yet. And oh gosh I feel knackered!

Tayto it frustrates me slightly when doctors say you're too young. I understand it's more common in people who are older, but Cancer doesn't discriminate. My Grandad had Eye Cancer in his 30's. Then he died from Liver Cancer at 52 only a few weeks after finding out he had it.

Woke up this AM really needing the toilet. Sat there to wee after 10 minutes I have up. It took me 20 minutes to have a wee. I was busting for. Debating whether to see GP or not. It's been going on a while which they know about but it's never been this bad

Thanks all.

Bad reaction this time so have been admitted. Spectacular pukefest and breathing probs. May not be able to continue with oxy which would mean 8 cycles of capecitabine instead - but waiting for the ward round and a plan!!

I’m in Yorkshire x

addled hope you feel better soon, at least you're in the best place

Move I would definitely try and see your GP if it's getting worse, you'll end up with kidney infections if you can't wee properly

Good luck to everyone waiting for tests/results. I'm getting lost off with who's having what done

I have my pet scan on Wednesday morning, I asked for the afternoon until they told me I can't eat for 6 hours before the scan. So 9:15 it is

addle sorry to hear that. I hope you feel better soon.

Oh no adle sorry to hear that. Any idea why? As you haven't had it the first time have you? Did you throw up at all last time?
8 cycles of pills is a bit of a bummer but the iv is actually much worse in my opinion so there's a bit of a silver lining. Good luck and hope you feel better soon.
I agree on the non discrimination thing. I know so many stories of people that had it despite being too young. Of course there is a risk factor and I understand the limitations on costs but still.
Practical question- who do you all use for travel insurance now? I've had to cancel a holiday of a lifetime and am having a lot of hassle getting my money back. I'm determined to have as many holidays as I can afford in the next year, but need to be insured in case shit hits the fan. Thanks.

Oh no addle really sorry to hear that. Didn't realise poxy oxy could cause breathing issues. Must have been scary. Hope you are being well looked after and manage to get home soon.

Move yes sounds like a gp job (or even a+e?). Not being able to see can't be much fun. Sorry to hear about your grandad. Yes it really doesn't discriminate.

Dulce gastroenteritis? Glad they got there in the end. Luckily I didn't get a stoma. Most of colon removed but they were able to join it back up . Sorry you are feeling sick. Not looked into travel insurance yet. Luckily we have to have medical insurance here anyway which will cover me abroad so I just need to find cancellation. I do remember reading there was a guide on one of the cancer society websites.......

Purple good luck with the pet scan. Glad you got the morning slot .

On my way out but saw Move's post just wanted to reply quickly. I have urine retention after my bowel surgery. I had similar issues and asked GP when to seek help - she said to see GP (or phone 111 if out of hours, I suppose) if it lasted 12 hours or more.

One thing that might help is facing the wrong way on the loo. So sit with your legs either side of the bowl and lean forward and rest your arms on the cistern. It puts your bladder in a slightly different position, which might encourage it to work. (A different GP recommended this, not just me being weird!)

And for addle

Thank you for replying everyone. It wasn't too long.. managed after 20 minutes then the second time was after 5 minutes. I'm only 24 feel like I have a body of a 70 year old! Got an appointment with the nurse practitioner soon. Could just be a UTI. I also have increased Billirubin which can make me dehydrated so could be related to that

Dulce try insurancewith :) it was set up by someone who had cancer herself. I've been to a talk by her and she was very helpful. They cover most situations. You might need to phone rather than do it online.

Move good luck with the nurse

purple morning appointments are definitely better

addle I hope you've had ward rounds now and know what the plan is. And that you feel much better soon. I was very ill on the oxaliplatin but not an allergy type reaction so they were happy to continue on a reduced dose. I did have three cycles with just the capecitabine as my first combined cycle was such a disaster. The capecitabine only ones were definitely a bit easier, so I suppose that's a silver lining if you need to do that. But annoying that it'll be more cycles.

Waving to everyone - any news from those who had appointments yesterday?!

Just a really bad UTI hear. 2 antibiotics a day for a week. Explains why I've been falling to sleep on the sofa during the day for the past few days!

2 weeks since CT on Monday so fingers crossed I'll finally get my results then

WWLK are you on the bowel cancer club too? Or can capox be given for something else?
Thanks for the hint on insurance. I will try them.
I had the breathing thing on the second round but not on this one. I've been walking around with a scarf though and that's helped although I look like a mug
Adle i do hope you're better soon. When are you likely to go home?
Hope the sun is shining for you. It's nice over here!

Move I hope the infection clears up quickly and fingers crossed for your CT results

Dulce yes, I've got bowel cancer too :)

Thank you whatwould No birthday drinks for me tomorrow!

If I call again today for to see what's happening about my CT is that too pushy? Called Monday

No, that's not pushy. I would definitely call today. No point waiting over the weekend if they can tell you sooner :)

Just called up. Good News, No abdominal mass or hernia can be seen. Bones look good. Receptionist is going to show the scan to the surgeons to see what to do now but I'm happy with that. Must be my kidney floating around!

Hello. Just checking in. My sentinel lymph node biopsy result appointment has been moved from 13th to 25th June. No reason given. Just got to wait an extra 2 days to find out what stage my cancer is. My arm is aching and numb due to the operation but this is normal I think??

Had an awful week my Dad passed away on Monday. It was unexpected but he has been severely disabled for 10 years. Not sure how I am at all