Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

Well done Dulce and Purple

Vag, bum, boobs... once you've seen one you've seen them all. After I shat myself during my first labour I gave up worrying about it! They kept telling me to push, so I did. Back-to-back 48 hour delivery with absolutely everything except emergency c-section... JUST GET IT OUT!!!!

Purple sorry, I forgot about your fistula. I am paying attention.. honestly.

Ok TQ you win my labour was only 6 hours but it put me off having anymore. I haven't shat myself in company yet but I suspect that will happen in time

6 hours!!! bloody hell. Have an amazeballs

Anyone know why hospital would do a urine test alongside a biopsy? Had a nail/skin lesion removed by surg biopsy today with samples off to histology (have a separate thread about this odd journey). Just seems urine test clinically pointless if proper tissue analysis taking place.

They always get me to do a urine sample every single time I come into hospital. I've never thought to ask why, I just assumed it was to rule out any infections/check protein

Hopefully someone will come along and give you an answer that's not totally useless

I've been following your thread, I'm glad it's getting taken seriously

Chase...absolutely promise radiotherapy is fine. I had 15 then 5 booster. By about 2.5 weeks I was knackered but up until then was in the office. After that i was full time from home....it's completely doable....I've had worse hangovers!!! And they are ridiculously lovely in radiotherapy unit and you even make friends as you're there every day at the same time!!!!
It's astonishing how,quickly you get used To it....and um just go to your "happy place" and surrender to.it is my advice...
Good luck...and if you need to know anything else feel free to ask or pm me....but I promise for me it was fine...xxxx

Fatty huge hugs to you..and everyone else.....have to confess might have a genuine hangover tomorrow so apologies for not making sense!!!!

Good point Addle and Purple. I've been lucky so far in that everyone has been v supportive.

Results day for me today . My sister is taking me . Fingers crossed . Hope everyone is doing ok 👌🏻. X

Best of luck Eve, let us know how you get on

Still waiting for my scan, it's not until 2:00 so I could have stayed at home and come through this afternoon they're talking about surgery so I could come out with a stoma. Fun times

Will be thinking of you eve and purple.

Hello all

purple hopefully you've finally had your scan by now :) I've got a stoma and it's not so bad. I'm happy to answer any questions if that helps - feel free to PM me. Sorry I thought I'd replied yesterday. Fistulas are a total bugger. I hope it heals quickly odd about PIP as the people I know who have applied for it are perfectly able to look after themselves etc. Maybe they applied but didn't get it anyway hopefully you can get some helpful advice from Macmillan.

eve good luck

freddie I hope you're not too hungover today

Flying sorry no useful experience, but I hope it improves soon

chase I'm glad you're finally starting radiotherapy. Good luck for tomorrow

Waving to everyone. I hope you're managing to stay cool!

Leslie how long have you had a stoma? Was it hard to get used to it? Is that because you've had your whole bowels removed? With my genetic condition some people opt to have it all removed as a precaution and I'll be discussing with the geneticist if that's an avenue to consider so I'm curious to know how you feel about it.

Hope it's good news on scans today.

Dulce I've had it just over a year. Before that I had an ileoanal pouch, which might be an option for you too. Well, I still do, but it's been disconnected. Yes, because I've had my whole colon and rectum removed. There's not really any choice with FAP because of the number of polyps. It has taken a while to get used to it. I had the ileoanal pouch because I wanted to be "normal". I was only 21 at the time. I had lots and lots of problems with the pouch and it really affected my quality of life, and I persisted with it much longer than perhaps I should have. When I got my secondary diagnosis I decided I didn't want my remaining time to be restricted by my bowel issues so I asked for the ileostomy. I don't love it, and obviously wouldn't choose this over a normal functioning bowel but it has made my life so much easier. I was in pain every day, barely able to leave the house, always stressed about where the nearest loo was, my diet was hugely restricted etc. I had a temporary ileostomy after my first surgery so I knew roughly what to expect and it was easier to adjust this time round. It still took me a few months not to feel squeamish about it. And it took nearly a year to pluck up the courage to tell anyone but very close family and friends (and people on this thread!) that I have it. When I had one the first time I hated it to begin with. I threw up the first few times I emptied the bag.

Sorry that's very long!

I'm definitely having a stoma. Just waiting for the doc to come round to tell me when, I'm staying in hospital tonight again although I won't be having the operation today.

Leslie I'm dreading it. I'm so squeamish and and feel sick just after googling images of it I've spent the last couple of hours crying like an absolute baby

I'm sorry you're feeling that way purple.. .

purple do you know if it is going to be an ileostomy or colostomy? I felt so sick too when I first had mine. That's normal. You'll get used to it because you don't really have a choice. I don't mean that in a nasty way remember everything else you've already dealt with. You can do this too.

You will have a stoma nurse who will talk you through what to do and show you. The nurses/HCAs will deal with the stoma for you at first, while you're recovering and getting used to it.

I don't want to overwhelm you but if you have any questions at all feel free to ask here or by message :)

Leslie thank you so much. That is very helpful. I have to read more about it as some of the things you mentioned make no sense to me! Your experience is invaluable. Thank you.

Purple I totally get you. Cry as much as you need to. Why do you need a stoma though? I'm not sure I remember what surgery you're having. Sorry

Purple sorry - it must be a huge shock. Cry away, that's what this thread is for. I can't help you here but Leslie is your wise owl here - and yours too Dulce. Maybe you can take some comfort from the fact that it will prolong your life.

Thanks TQ. For me it will be a choice (at least at this point) and I'll only do it if I'm advised to do so. From what I read, with this syndrome I'm less likely to have it spread to other organs but have a high risk of having a new tumour in the bowel. So when it's removed the chances of that happening are around 2%. Definitely worth considering at least. But I can see it's a total head fuck- just can't be as bad as first hearing you have cancer!

Definitely cry away purple.

purple so sorry to hear about the stoma. It must be a shock, cry as much as you need.

My Dad has one for his urine following bladder cancer 5 years ago. I know not the same, but it is now part of his daily life and more or less 2nd nature to him now (and he was incredibly reluctant to have one initially) not trying to do an "I know someone with one" story, but if it helps you at all to know my Dad coped, and tbh you have already dealt with more and you will deal with this too, but it is shite.

I was feeling quite sorry for myself today with my ongoing nausea & newly (sore) fitted picc line. I now feel quite lucky that that is all I am contending with today.

purple and Dulce the Stomawise website is quite a good place to start for a basic introduction. Be warned that there are some photos.

Dansac (they make ostomy products) and Fittleworth (product delivery company) also have information sections on their websites.

I expect there are other websites but I can't think of any off the top of my head!

noodles I hope your PICC line stops hurting soon it will be worth it in the long run to avoid cannulas!

Ah stop being so nice to me! You're all making me cry again. Not that I need an excuse lately

Dulce I have a fistula in my bowel caused by the chemo so that's why I need mine

Leslie I'm still waiting to see the doctor so I'm not sure what kind I'm having, I didn't even know there were different ones until I googled. Thanks for the links, I'll have a look through them while I'm stuck here in hospital.

Thanks TQ they've stopped my Avastin as they think that's what caused the fistula in the first place

Noodles was it painful to get in? I'm still not brave enough to ask for one. They had to use a vein finder yesterday to get my cannula in. She put it in so deep she made my eyes water and I'm pretty good with pain

Eve how did you get on?

On a positive note my consultant has agreed to filling a form out so I can claim pip. Such a weight off knowing that I don't need to panic about work. I know I'll be on less money but as long as the bills are paid and I get chance to try to recuperate then I'm happy

I have attached a photo of my very deep cannula. Not the most comfortable thing to try and sleep with