Op to remove all my rectum

Hi SarahH21, I just read your bio, your surgery was radical, I had no idea that they could do all that, you're a very strong woman,  I don't know if I'd have coped, ss I said I'm a newbie, I know nothing, but I will be a fast learner. I will be asking lot's of questions, I'm lay on the sofa trying to think of something to say, I'm gobsmacked, my surgery seems like nothing when compared to yours, I feel a little guilty asking for support when you've gone through so much, and you're so strong, mine worries seem very small compared to what you have been through. My other half is taking it very badly, he is terrified, I'm going to read your bio to him, so he can see what the specialists can do these days, I've also told him to put his big pants on, as at some stage I will be needing him to be strong for me. My sister has now started to propose me up  after I've been propping her up since I found out. I'm truly grateful for everyone's support, your bio has left me gobsmacked, you're a shining example of what can be done, and how to pull through it. Hats off, I do feel a little better, knowing that its not the end of the world and that there's so much that can be done. 

The fear of the operation is how we all feel the good thing is we are all asleep when it’s happens. The fear of the cancer is worse. I hated that thing in me. 
That’s what gives you the strength. You need it out of you and in the bin with whatever it takes.
Take care. Treat yourself to some treats x. 

Hi Rosie

Please don’t minimise what you are going through and the surgery you will have as it’s also a huge thing to get your head round and a big deal! And of course you could and should ask for support-we all need that, and benefit greatly from talking to others.  

I think it’s amazing what we can come to terms with when we are faced with no choice-I never thought of myself as particularly mentally strong before cancer, but it changes you. When the reality was “try this massive surgery or die” it focuses the mind! 

But what the medical staff can do for us is utterly incredible-my surgeons simply saved my life and I wouldn’t be here now without them. If someone had told me 4 years ago I would have that surgery, adapt to 2 stomas and all the rest of it, I wouldn’t have believed it would be possible, but it was. 

I am lucky to have an incredibly strong partner who never showed any fear, kept calm and didn’t tell me when the surgeons said there was a 70% chance I would die in the op or right after.  I’m still here, so it was right not to frighten me, though I would still have taken those odds! 

But it can be very difficult for those who love us to come to terms with our diagnosis and the treatment we need to undergo to be well-they are scared for us. Some can hide this better than others-like my partner. Your husband is scared of the unknown and what is to come, but we all are inside.  Strength was what I needed because we only had each other-no family help or support as lockdown kicked in on the day I was discharged from hospital. We did everything ourselves and we coped because there was no other option. 

Please do let your husband see what can be achieved, how we can go on to be well and live normal lives-let him see there is always hope, and light at the end of the tunnel. 

I am glad you feel a little better-we are all here to help each other if we can, and prop anyone up who might feel they are sinking. because we all sink at times. If reading my story has helped, that makes me glad I wrote it. I very much appreciate your kind words today and you’ve made me smile! Thank you.

Sarah xx

Sarah xx

Thanks Artsie,  I feel the same, I just want it out,  qnd I've just been to the hairdresser, feel better now I've had my highlights and lowlights in, and a cut too, I'm waiting foe q call from the colorectal nurse about the weekly MDT meeting. xx

Sounds perfect. Having your hair down is a lovely way to feel better inside and out. I love the head massage that some do. 
I’ll be thinking of you 

• I showed your bio to my partner, it gets complicated as he's my ex husband,but current partner, we can't live together, but can't be apart, so I live in a flat above the one we bought 14 years ago, so if we so have a difference of opinion, we have somewhere to go and cool off. It works, wish we'd thought of it years ago. We spent 4 years apart, but stayed in touch and I visited him at least 2 times a week. He goes down to his place when he's not coping, and especially if the colorectal nurse calls, I keep telling him that it's OK to stay, if fact I encourage him to stay, then I don't have to repeat my self to him amd he may think of something I haven't. He read your bio, and was amazed and said if they can do something so invasive and you coped so well, then I'll be just fine. It certainly seems to have changed his opinion about cancer being a death sentence.  He's off to the Dr now, last October he had to have emergency surgery to remove his gall bladder, he'd been telling the GP he had pain in his right side and when he turned over in bed it was like a balloon of water sloshing over his stomach inside, they kept telling him it was stress, though he hadn't got anything to stress about then, then he collapsed one night and waited 3 hours for me to get up and then called me, ambulance was going to be 4 hours, we live 5 mins from local hospital, it took me 35 muns to get him to the car, they did some tests and scans, said there was fluid in his stomach, they'd wait a couple of dsys for things to settle, give him iv antibiotics.  I saw him that evening and he was in so much pain. He hates taking meds, but they gave him oramorph which made him sick, then more pain. I left him and the next morning he collapsed, was taken to surgery that morning, it took 5 hours to remove his gall bladder as he had gangrene in his stomach not peritonitis,  gangrene, his surgeon said on 40 years he'd not seen anything like it, and they needed to listen to patients more and not rely on scans, qmd if they'd done op in the afternoon, he wouldn't have survived. He's fine now, but he's had some discomfort and pain on that side of his stomach, and they haven't had a follow up appt. I've told him to tell thw Dr he's stressing, whether he will is a different matter. I'm glad he read your bio and I think it's changed his thought process. Thaks so much for you help and support, the people on here have been very kind and helpful, it really is a good site, at first I read all sorts online and scared myself silly, nurse said to only look at macmillan site or .gov, I chose macmillan and I'm so glad I did, its really helped me and also my sister who took the news badly, only because she's a hyperchondriac!!! Thought it may run in the family, I love her to bits, but she can over react, she's now a good support system, you went through so much and survives to tell thw world that cancer can be beaten. Thank you again, you're an inspiration. Rosie xx

That actually sounds like a living arrangement that might suit a lot of couples, and it’s lovely that you’ve found something which works for you both. 

I think you are right in terms of trying to encourage your husband to stay when the nurse calls-another pair of ears listening is incredibly useful and I know I’ve missed a lot in appointments which my partner has picked up on. 

I’m glad he’s been able to see things a little differently now, and I hope that can help take some of the fear away in some way. It’s not pleasant having any surgery, but results can be so good! I’m 60 now and I remember as a child cancer was talked about in hushed tones as the big c and it really was considered a death sentence in a way that it isn’t now due to treatment advances.

I wonder if some of his reaction is due to what he went through himself with his own health? He’s had a horrible and very frightening situation to deal with and the memories of that will be hard to deal with I’m sure. Is it maybe making it harder for him to cope with your diagnosis and what will happen, given that he was in such an awful position himself? If you can persuade him to have a word with his gp he might find it really helps. Men are often not the best at opening up, I know, but what he went through himself sounds absolutely horrendous and extremely scary, and it might be playing on his mind. 

I hope he will go to hospital appointments with you as I’m sure the surgeon would be able to reassure him about the operation and explain it to him. Then he’s getting the story straight from the horse’s mouth as it were, and he can also ask questions to get a better understanding of it. 

I must be that rare breed of person who never googled anything when I had my first cancer diagnosis! I didn’t even read the information from the hospital, simply because I was scared and didn’t want to see it in black and white. I decided just to listen to my team and trust them to help me. Ultimately that saved me potentially scaring myself silly with stuff that wasn’t applicable to my situation, so I’m glad I took that approach. I still like to think of myself as a unique individual, so I don’t look at out of date survival statistics either! What will be, will be and there’s no point in spending life worrying when there’s living to be done and holidays to go on! 

The thing with the Macmillan community is that it allows you to connect with real people who understand what you’re feeling, have the personal and practical knowledge of treatment to share, and can reassure you about everything. I’m also really glad I joined here as it was pretty lonely trying to go through all of this with no support. 

Things certainly seem to be looking up for you in terms of both your husband and sister’s support for you now going through this and it’s really lovely to see this after you were so lost and floundering initially. Onwards and upwards now! 

Sarah xx

Thanks SarahH21, he says he's terrified of me dying and I think its because he hates being alone,  he went from one relationship to the next, then he met me, amd dor the last 28 tears we've been together,  apart from the few years we had apart, but we still saw each other,  went on holidays together, but couldn't live in each others pickets, he's 10 years older than me, I'm 54, so that plays on his mind, but he saw the Dr today qnd said he had a good chat with her, and she told him that I'll be just fine, like everyone says, there's much more options and treatments now, so I think that helped. 

Thank you for your kind words and help, ut really is appreciated, as it everyone's help on this site, everyone is so nice and helpful, I can't thank everyone enough. Rosie xx

I’m glad it’s helped for him to chat with the doctor. Fear can run away with us when we get diagnosed with cancer and it’s our first time dealing with this, but our surgeons are so skilled and experienced in dealing with cancer and treatment every day, that we can put our trust in them to do what’s needed to get us better. 

And those of us who have been through this ourselves are always on hand to show there can be good outcomes and light at the end of the tunnel.

Sarah xx

Hi MissTee

My tumour was T2 N0 M0 and low down so borderline like yours in respect of reconnection. I had the operation on 27th July so only 3 weeks ago and already up to about 3 twenty minute walks a day. They also gave me 4 core ab exercises after a couple of weeks. I know everyone is different and I was pretty fit and healthy before, but it’s nowhere near as bad as I feared. Someone once told me life is like a game of cards, and you just play as best you can with what you’re dealt. I’m also a big fan of the headspace app. He does a coping with cancer meditation course and it really works for me. All about being in the present rather than constantly looking backwards and forwards etc… 

In order to make sure they got the whole of the cancer out, they unfortunately couldn’t reconnect me, but to be honest I’m getting on well with Suzie (my stoma). In a way knowing it’s permanent and not having to go through further surgery for reversal etc has meant I can just get on with rest of my life now.  

I think it’s called LAR (low anterior resection) if they can reconnect, but I ended up with an APR in the end where they removed all my rectum and anus so I have what I’ve since heard referred to as a barbie bum. Sitting down was a bit awkward for the first few weeks but once the stitches were taken out it’s much better. 

Feel free to ask me anything you like, especially once you know what type of surgery it will be etc and if my experience is helpful xxx