Quick question… re tumour

Hi Prettypinkroses that is a very interesting question and I don't know the exact answer. The tumour will definitely shrink in response to the radiation and I suppose that logically some of the dead skin/remains of it would possibly be passed out of the body in bowel motions. Doesn't sound too pleasant for you, just keep an eye on your diet and note that Oromorph will probably constipate you. Consider a stool softener (not laxative) to keep things soft for now,. Bev x

Thanks Bev, the Movicol is a softener. Definitely won’t be going near any laxatives!! Will message my onco tomorrow and ask. Diet is very bland. Can’t face much still. 

I just remember reading somewhere in all my research that in some cases tumour can be released along with stools. 

Thanks for reply xx 

Hi Prettypinkroses yes the movicol is a softener-missed that bit in your post! Good idea to message your Oncologist and ask.  I do think that you’re right as it does make sense that the skin of the dead shrunken tumour could be passed out in B/M’s. I never thought to check my B/M’s after treatment Bev x

Hi

Well done on finishing your treatment, I’m just behind you I finish on Wednesday .. thank goodness. With regard to passing the tumour, I had that conversation with my oncologist last week ( Have been getting awful poo, won’t go into graphic description!) and we talked about  passing pieces of the tumour, his response was that yes that is very possible and likely! My tumour was also 5cms and similar location to yours! 
Hope this helps, 

Sue x

Jidshurl Thank you, same here going to the loo has been utter torture. And as most of mine was liquid at this point I did wonder what the hell this floating bit of skin was. So yes, can’t even believe I’m saying this, I did inspect it. Definitely skin. Felt quite sick… husband said I should have taken a photo for onco but frankly I was so sick I just needed a sit down and a cry.

Having had a good day on Friday (when I saw my onco and finished treatment) I’ve then literally fallen apart this weekend. It’s like 1 step forward 100 back. 

I really don’t see how I can go on eating and passing any bowel motions  I literally am screaming in pain  I’ve tried in the bath, warm water spray bottle and before this those things had worked a bit but now the sores and fissures and god knows what else are beyond agony  10ml of morphine does nothing.  Insitillagel is impossible as it used to sting a bit now it makes me swell up like a baboon and the agony is unbearable. 

It’s like permanently having broken glass to sit on and wee and poo through. I’m at my wits end.  The sores inside my vagina which no one could agree on what they are  (I’m taking 5 x Aciclovar a day in case it is herpes but it’s not changing) are just so red inflamed has an almost yellow/green layer to it are so painful I just cannot cope. 

I know I need to phone the onco but if they even mention putting me in hospital I might just run away!

Apologies all, bad day alert! Trying to hide the screaming in pain or losing control of my bowel in front of  my children and husband is just so debilitating. You wouldn’t wish this on your worst enemy. Torture doesn’t even cover where I am right now. 

I thought I was ready for this, I’d prepared with all the things I might need  I knew it would be excruciating but this is way beyond my expectations. Plus the low blood pressure and passing out. I don’t know what to expect next. 

Xx 

Hi Prettypinkroses you’re right in the midst of the worst of the side effects right now but you will definitely improve. You just have to get through the next couple of weeks and the pain will begin to ease . I would strongly recommend you call your Onco and say your pain meds are just not cutting it. Ask him/her to review your pain meds and let them know just how much you’re suffering. You need to get on top of the pain, it does literally wear you down so much. Also make sure you’re getting enough rest, this also helps with the healing process. Bev x

Hi Prettypinkroses, 

As Bev has said this is what they’re talking about when they say the side effects getting worse before they get better once you’ve completed your treatment. It’s awful if you have a severe reaction such as you’re having but again I agree with Bev in the fact that you need to be stressing to your oncology team that you need your pain meds reviewing as they’re not offering the slightest relief. If they can’t offer you anything other than what they’re already prescribing please ask to be put in contact with the palliative care team, I’ve learned since being on this forum that these are the best people to deal with pain management. I can promise you that things will soon start to settle down though, the 11 days post treatment were by far the worst for me then I turned a corner & the healing process began, this was way quicker than I expected & hopefully this will also be the case for you. I really hope you start feeling better soon, 

Nicola 

Nikki651in1500 Thank you lovely Nicola & Bev, it’s 4am and I’m rinsing cloths in warm water to relieve some of the pain and itching (hoping like you say that means it’s healing). Am going to call Onco first thing. They can’t say I haven’t tried everything and I’ve been taking Aciclovar religiously for a week now and no change (9 day course) so if it was that then I would have expected some change at least. The constant pain is mostly my vaginal area (I’m drinking gallons of water to make sure my wee is as diluted as possible) as well as using the special spray bottle but it’s so swollen and sore constantly inside the vagina. The rear pain and bleeding I can cope with until it comes to passing a motion then that’s when it’s unbearable. It must be because my tumour is so near the entrance. I can’t see how it can heal if it’s constantly going to be  tearing every time. Plus he says there are now haemorrhoids there which I’ve never had before and they seem to constantly bleed. The skin around the area top of legs creases etc is so far so good. He said he expected that to be much worse but I seem to be keeping on top of that and it’s fine. Just like light sunburn. 

I think I need to go in and be reassessed and a vaginal swab taken. I’m surprised that I haven’t been offered a further blood test after last weeks livers were so low. You’d think they want to check the levels?  My blood pressure is around 95/55 which can’t be helping how I’m feeling. I just thought that with the paracetamol/ibuprofen regime plus the 10ml Oromorph that that was the very top painkillers they could offer. They weren’t lying when they said this was the worst bit! And I’m trying I really am. Maybe this is the downfall of being at a private clinic and not at a hospital but my GP would not refer me via NHS as she said there was nothing wrong with me! (How wrong she was!!). So far my treatment bill is just under £40,000. 

I feel embarrassed that I can’t cope when you all have! But this vagina issue is not one I was expecting! 

M xx 

Prettypinkroses  I hope you got back to sleep again afterwards. As I understand it, with the antivirals for herpes, if you start taking them once the sores break out they will only shorten the outbreak by a couple of days.  As your immune system will be down for quite a while I would consider asking for a maintenance course to prevent future outbreaks if you get another outbreak after this one. I see you are taking Aciclovir, there’s also another antiviral called Valacyclovir and you get the same strength but only need to take up to two tablets a day which is easier for spacing out the doses.  I understand this medication is more expensive which is why Aciclyclivir is the first choice for prescription. For anyone else reading this with a diagnosis of genital herpes about to start treatment please ask to be put on the antivirals as soon as treatment starts. Treatment will depress your immune system inevitably leading to an outbreak and if the antivirals are already in your system there’s a much better chance of having a really painful break out of sores. 
hope all goes well today. You really are in the worst bit at the moment, I just slept the clock round through this bit, if I wasn’t sleeping I was in a salt bath. They are miserable times but rest assured they don’t last! Bev x

Prettypinkroses  Sorry you’re having such a bad time.  As Nikki65 said, I’d highly recommend your community palliative care team who are the experts in pain control as well as emotional & practical support.

I’m guessing you wouldn’t be thrilled at having to contact your useless GP, but you could chat with the Macmillan helpline on 0808 808 0000 about a referral, or the Marie Curie helpline 0800 090 2309.

When you say “… I can’t cope when you all have” - most of us just got through it because we had to, somehow.  It wasn’t pretty or graceful or brave, it was gritting teeth & ticking off hours & days.

In a couple of weeks you’ll look back on this & be incredibly grateful not to be in this kind of pain.  Hang on in there!  xxx  toni