New here

Hi Smac9

No one wants to be in this 'club' but welcome, lots of lovely helpful folks here. 

I found my diagnosis and start of the journey hard and overwhelming at times. One thing that helped me a lot was getting the most out of my time with health professionals...ie making sure I got to ask all the questions I needed, and understood. I always write down my questions before an appointment, and make notes while I'm talking to surgeon/oncologist/whoever. I also find taking someone with to appointments really helpful - sometimes my brain is still digesting the previous thing the Dr said and 'wing-man' can fill in. 

You are blessed to be in good health, thats a real positive and will stand you in good stead! I have also found having purpose holds one steady - you have a wonderful rock purpose (being mummy). And never hesitate to put your hand up and ask for help, I sometimes do the stiff upper lip thing too much but over time have realised there is a better way. Forums like these, and the charities all very helpful. I discovered walking into a Maggies helpful - there's one at the Royal Marsden and at other hospitals. You can just arrive and talk to someone, they don't give medical advice, but sometimes just saying all thats in your head helps. 

Hi Smac9

Welcome to the board - I hope it can add to feeling supported as you face a scary situation you’d have rather avoided. There’s no getting away from the fact this is a hard time for you but you will get through it. I did it the other way around - having my surgery first and chemo afterwards - and found the advice on this board and the Bowel Cancer board invaluable. I realised I wasn’t the only person going along this path and other people felt just as helpless when they started it.

Babotie has offered lots of good advice; keep yourself as healthy as you can and in as much of a routine as you can manage. I found it really helped me to keep my normal going as much as I could because many things were out of my control. And just try to focus on the next test or appointment rather than how the whole thing might go - easier said than done I know …..  Good luck!

Hi Smac9a1b81 and let me add my welcome to the group too.

You’ve had some very good advice already and I hope you’ll find the group helpful and supportive-everyone will be happy to help with any questions you have and will be keen to help out with advice and tips from our own experiences.

I have 2 stomas as I’ve had my rectum and bladder removed, but that was nearly 6 years ago now. Your current good health will definitely stand you in good stead as you start on this path, and I’m presuming you your stoma might be a temporary situation for you with the potential of having it reversed at a later date? My colostomy is permanent, so no chance ever of reversal, but even though we are all in different situations, with different types of stomas, and indeed different cancers, there are many aspects which are familiar to us all.

It might be difficult for you at the moment to know what questions you need to ask of us, but that will come-the unknown can be scary for us, but I focused on the end result of surgery rather than the process of getting there. I found the thought of any kind of stoma harder than the reality of it. 

You don’t have long to wait before your surgery, which is a good thing. My advice would be to take things a day at a time and not to think too far ahead. You’ll have a lot of new information to process and if there’s anything you are unsure of, please speak up and ask. This is a new world for you, and no question is a silly one for the medical staff or us here in the group. Feel free to discuss poo and all aspects of wearing a bag-none of it will shock us or be too much to ask!

Keep us posted with how you’re getting on, and know that we will be here to support you through this. I hope you’ll get your date soon and that everything goes smoothly with your surgery.

Sarah xx

Hello Smac9a1b81,

If you click on my name you should get an understanding of a typical treatment plan for a rectal tumour. Some stages of the plan might take a few weeks to get started but don't worry, your colorectal team will have your best interests in mind. Avoid Google searches on the subject - wholly unreliable and with mixed messages. Stick with the NHS and Cancer Research UK for sound, no nonsense information. You are perhaps thinking that the next 6 months are going to be most unpleasant; that is not the case. You will have appointments to keep which can be critical stages, with waiting periods in between but don't worry if you feel that nothing is happening because you will learn that it is, behind the scenes. I found 5 weeks of chemoradiotherapy to be a fascinating, painless and reassuring experience in the knowledge that the fight against the alien was in progress! Contrary to expectations, surgery was pain free as well thanks to the anaesthetist and the post-op nursing team know their business with regard to your care whilst in hospital.

You know that if you have any queries or concerns subscribers to these pages will have an answer for you. Drink lots of water each day and keep to your daily routine to occupy your mind. Rest if you feel weary - sometimes you have to - but then get up and do something useful. Try not to worry about things over which you have no control.

Best

Dulac

Thank you so much for taking the time to reply to me. And for all your tips. I think taking notes in to meetings is a great idea because it's so easy to get side tracked. 

You are so right I have a wonderful purpose being a mummy ️ and I am very blessed to have an amazing husband too. 

Having good health sure will help me through this. 

Thank you for the tip about the drop ins. I might well do this. 

Thanks again for advice I really appreciate it 

X

Thank you so much for all your advice. 

And for turning what I may be looking at, as a negative in to a positive and a goal. And making this seem less scary. Thank you. 

Good to know about the "behind the scene" I think it's natural to just want things done yesterday. But that's not reality and I need to keep telling myself, even though I am not in constant contact with health professionals that things are actually happening. Thank you for that. 

That's exactly what I am going to do. Keep up routine and carry on. Treat all this like a check list. Ticking one thing off as I go. 

Thank you Dulac

Thank you Sarah. 

I have been given great advice. Certainly taking it one day at a time is what I need to do. 

I am going to focus on the fact I am in good health and it will get me through this. 

I just got a call. The plan is for a stoma on Friday. Unsure of what position l, depends on how things look but there is potential for a reversal in the future. 

I am really scared about getting the stoma and scared about all the changes. But I'm sure the thought is much worse than reality and like anything new. It takes time to adapt. 

I haven't had a pre-op or any communication with stoma nurse ect. If u can recommend a few essentials I should take to hospital that really helped you I would appreciate that. 

Thank you so much Sarah for taking the time to reply to me. I was really scared no one would. But this has been really good for me. Thank you xx

Thank you so much for your reply and lovely positive energy! 

And as you say keeping as normal a routine as I can will make me feel a bit more in control. Really good advice. 

And as you say take one thing at a time. Almost like a wee check list. You have to tick one bit off at a time to move to the next ️ 

Thank you so so much

Prior to chemoradiotherapy I had an operation to create a temporary loop ileostomy, which my oncologist recommended to relieve the significant diarrhoea to be expected. It was a relatively swift and unusual experience involving 2 nights in hospital. The stoma nurse was first class and described a simple routine for stoma care. Four years later I still have the ileostomy and it works very well indeed, so well that I declined several offers to have a 'reversal' procedure. Seeing your stoma for the first time is a shock but there are advantages in having one so it isn't all doom and gloom!

Dulac 

Thank you!!! That's so reassuring. And I think I will be greatful for it also once I am up and running. The I am similar with constant diarrhoea (overflow and a lot of blood) the consultant feels I am high risk for an obstruction with the chemo radiotherapy too so I know it's the best thing. And in many ways a really good plan. 

Good to know your were only 2 days fantastic. I am going to aim for a swift recovery. And crack on. So good to hear your decision to keep the ileostomy also. 

Thanks again