Looking for support

Hi Hayley and a warm welcome to the board. If you click on my name then you’ll see that I had a couple of set backs after my surgery and it does get you down. I remember saying to my husband that I just wanted to feel like ‘me’ again?

Is your stoma a permanent one? Mine was reversed once I’d finished treatment but my friend has a permanent one and you’d be none the wiser if you didn’t know - she goes on holidays and cruises and nights out etc. Further down the line I think your stoma nurse might be able to advise you on irrigation which allows you to wear a small cap over the stoma but it is quite time consuming.

https://www.stmarkshospital.nhs.uk/wp-content/uploads/2014/05/Colostomy-irrigation.pdf

Please keep posting as we’re all at different stages of treatment and recovery so ‘get it’ and the support desk is also there if you want to chat to someone in person?

Take care

Karen x

Hi 

Thank you for your reply.

So, they have said I can look at reversal once treatment is finished. I just hope I haven’t got to wait too long because my mental health is so so low.

I think I’m also struggling because I don’t have a partner, I’m a single Mum of 2, they are 18 and 15. 
There are times when you just need someone to be there to hold you, comfort you and I just have to deal with every low moment alone.
Such a tough journey.

H

Hi Hayley, just saying hello. I too am going through chemo post a shock stage 3 bowel cancer diagnosis in December. I don't have a stoma, however, and can imagine how the speed of things happening is a lot to take on. 

Do think about using the support desk, it can be so lonely and isolating, made even worse when you are on your own. This is a lovely space, so do keep posting if it helps. Also don't forget your GP, don't wait until you feel your mental health is on the floor, help is available. xx

Getting an unexpected stoma must be so hard! I had months to adjust to the idea before my surgery. 

In my case I ended up with 2 permanent stomas, colostomy and urostomy. Even with advance warning, it was very hard at first. But over time I grew to accept them. 

My stomas discretely hide beneath my clothes and no one knows they are there. People with permanent ostomies live full and active lifestyles. Only your cancer is holding you back, not your ostomy. 

Hi,

thank you so much for your message. I am so sorry you too are going through this to. 
Is the support desk to speak with people or just messages like this? 
I’ve reached out to someone for some help but on a waiting list so no idea how long that will take.

Have you had your cancer removed?
How are you finding you chemo?

big hug x 

Having a stoma was something I was hopeful to avoid but in order to save me I had to have one. 
It is so hard to accept and I do wonder how long it will take for me to get to that point. 
Cancer is just bloody horrible isn’t it. Nothing can prepare you physically or mentally for it. I’m usually such a strong happy person but my goodness this has knocked me. 
Any tips to help with the stoma smell when emptying. I find I don’t want to go out as worried about having to empty my bag in public.

H x

Hi there, I think the support desk is in person.  Also at the hospital there tend to be Macmillan staff and you can drop in to chat. 

V similar to you I had zero symptoms aside from anaemia.  Thought the doctor was over reacting! Am 53, healthy.... or so I thought! The shock is enormous.  I had operation end of Jan. All removed but in 3 nodes. Am finding chemo rough, particularly the infusion bit. How are you finding it?

Rest assured your sparkle will return am sure. We just have to get through this. Hope you get to enjoy some sunshine today. Xx

That’s really helpful, thank you.

I felt the healthiest and strongest I have ever felt, apart from being so tired all the time. I found out the day after my 42nd birthday. 
Chemo is really rough for me too, neuropathy is getting worse each cycle, fatigue is unreal, sore hands and feet, my hair is falling out and thinning, nausea is constant and my mental health is low. I am nearly on my week break before my 4th cycle. Usually by now the nausea has passed and I have a bit more energy but it’s clinging on for longer on this cycle. 
My taste is all over the place too, have you found that? 

How far into your chemo are you?

We will get through this, just want it to hurry up . 

I shall make sure I see some sunshine, walk down the beach with the dog is on the agenda today.

It’s really comforting to talk to others, so thank you for your messages x

Me too! I had spent the past year with a personal trainer, in the best shape ever!!!! Life, eh? Ugh I feel for you. Just started cycle 2 and couldn't get up for 3 days! Neuropathy, nausea, crushing fatigue..... yep, taste weird and a really strong sense of smell that doesn't help the nausea!!!!!!! I know what you mean, the days can't go quick enough!!

Beach sounds amazing! I am in Yorkshire, beautiful but too far from the sea!

Enjoy xx

Hi Hayley

I woke up two weeks ago from my operation to realise I had a stoma. I knew there was a possibility but surgeon had said he’d avoid it unless he had to. Even though I was semi prepared it might happen, I was absolutely devastated when I realised it had (I was still half asleep from the anaesthetic but already crying - and carried on for hours. I think the surgeon was a bit taken aback by how upset I was - I didn’t even ask how the rest of the op had gone until the next day!

So I totally understand. Mine should, all being well, be reversible, but that could still be several months away. I’m actually copping practically with it ok, but emotionally is a different matter. Waking up to a different body is a lot to take in and accept. This whole cancer journey has been so bizarre and tough because I felt completely well when I was diagnosed, and each bit of treatment (I had chemo first, then surgery), feels like it’s chipped away at me. 

My main advice is that you’re not alone, and to be kind to yourself and don’t beat yourself up for hating the stoma. It’s an enormous adjustment. I got slightly irritated when a couple of (well-meaning) nurses and doctors told me I’d be used to it in no time.

Also, the chemo is likely making you feel ever lower than you would anyway. I noticed that I’d have a few very dark days each cycle (usually in the second week), where things felt even more hopeless than usual. The drugs are very strong and can affect you mentally as much as physically.