For people having an ileostomy or colostomy or living with a stoma. Support each...
A support group for patients with Lynch syndrome (also known as Hereditary Non-polyposis...
After a really shitty 2019 whjen my wife of 13 years decidwed she wanted a divorce, i had some health issues which culminated in a rectal bleed at work and then a diagnosis of rectal cancer on New Years Eve.
Happy New Year!!!
getting set up for chemo-radio on 18th Feb and panic stricken for operation to remove tumour and be fitted with a permanent stoma.
Can anyone reassure me that there is life after this as i am scared out of my mind for the future!
Oh Dave , I am so sorry to hear what a terrible time you have had . Tough times for sure . I am going to tag in my good friend The BODACH . He is a wealth of information and support . We are all here to support you through this but Bodach can talk from experience which is very relevant. Others too will pitch in and share . There is also a support line 0808 808 0000 and if you ever need emotional or practical support please feel free to contact them .
Ask anything here . Everything is relevant and we will do our best to answer .
I am glad you joined in the forum and hope we can be of some help to you .
take care ,
I got rectal cancer back in June and had to have an operation immediately to fit a permanent stoma which was a shocker. To be honest the stoma has been the least of my worries. My tumour was so low down I didn't have any other choice, so decided I needed to fully embrace it and look upon it as my life saver. It takes a little getting used to but once you do its not as big deal as you think it is- I can assure you.
I found the radiotherapy relatively straightforward with great and very professional staff who helped me through the process. I was lucky not to get any side effects from the chemo- so again the reality was not as bad as I had thought it was going to be. Its something you take in your stride and get on with, and I am sure the same will apply to you. I think a positive attitude helps you deal with the stress.
With any luck the chemo-radio will do its job and you wont need an op. I wasn't so lucky and I am now 7 weeks post APR op and waiting for a 3 month chemo programme to start in a few weeks. To be honest I feel well- haven't had alot of physical pain as the meds do the job, as do the amazing people in the NHS. Most of my pain has been from the mental stress, but a positive attitude and support from family and friends has helped me through it so far- as well as my fellow survivors on this great web site. I still think I have every chance of getting through this, despite the setbacks.
So good luck and try not to be too down.
My welcome to the online community and to the Bowel (colon and rectum) cancer and the Ileostomy, colostomy and stoma support Groups and I'm sorry that it see you here and hope that we can help you put 2019 behind you and start looking to 2020 as the new start to your life.
Can I give you an assurance that there is life after all this to be honest, No, but with the help of the members sharing their experiences with you will help you see that there is and like so many of us you will find that you too can have a life with a stoma and be free from this disease.
In both groups you have joined you will find that you will be amongst others all in different stages of the journey, some like you right just starting out through to those who have had the chemo/radio, the surgery and now have a stoma bag which means that at every stage you will be able to start up conversations with others and ask questions and as time progresses others will join who are in the same position as you are in now and you will be able to help them.
Living with a colostomy
Adjusting to life with a colostomy can be challenging, but most people get used to it in time.
You may be concerned that your day-to-day activities will be restricted and other people will notice you're wearing a colostomy bag.
Modern colostomy equipment is discreet and secure, and you should be able to do most of the activities you enjoyed before without experiencing the symptoms that made the colostomy necessary in the first place and it is up to you who you tell that you have a bag, if you don't tell no one will know.
Over the next few weeks/months feel free to give me a shout out if you need a chat or need to know something, I'm always about to support you. You will also find that the members of both groups are very supportive towards each other and will gladly share their experiences with you, we also believe that there is no such as a silly or stupid question, if you have something bugging you just ask us one of us will have the answer and you can move on.
Of course you are scared but with us behind you I know that we can make this journey a smooth one.
The members of the groups are testimony to the fact that there is Life after this disease.
Please keep in touch
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hi Dave, sorry to read your post and certainly not a good way to start the new year, depending on how low down your tumour is, there could be other options, ie you could have a complete response from the radio/chemo treatment, and you may fit the criteria for papillon treatment, Sean has summed everything up in his post,if you click on people's names you can read about there journeys, and this may give you plenty of hope, I can assure you there is plenty of life after diagnosis, all the best cheers john.
I’m sorry you’ve started 2020 with news of your cancer. I think a lot of us on here were shocked by our own diagnosis. I had Chemo tablets, alongside radiotherapy. Then a three month wait for surgery. I suffered a blockage and had an emergency stent fitted 3 weeks before surgery. If you’re relatively healthy your recovery time from surgery can be a lot less time wise. It’s easy for me to say as I had mine 10 weeks ago! I found the support on here priceless. The BODACH really is a mine of information and very supportive, as are most on here. We all have amour good and bad days so it’s good to check in and get things off your chest. I wish you the very best for the future. I’m very lucky as I bounced back quite quickly from surgery. As everyone will tell you, just listen to your body.
Short answer is yes. But you knew I was going to say that!
You need time. But most of all you need help. Don't try and do this alone.
I went through the same, albeit not a divorce.
I was scared of the future, but actually I used my diagnosis of cancer and the prospect of dying as a reason not to be fearful.
I could't get dying wrong, so what am I worried about.
At the time I was like "most of my life I have worried about the future. now I face dying, why should I worry, it's not like I can get that wrong" ...and so began a moment of realisation that since my 20s (I am 46 now) I probably had the starts of my cancer (according to my surgeon) and I didn't worry about it back in the 90s. And there are many people that don't get cancer that will die before me. They aren't worried about the number 24 bus flattening them. So why should I worry about my cancer, I'll outlive them.
Fast forward to getting my all-clear, I still have the same worries we all do, but I remind myself that I am here to have those worries.
Like that Sunscreen song of the 90s, the things we worry about are not the things that we need to worry about.
I have gone through a transformation of sorts, and I reckon in time you will too. It may not be the same as mine, but the one thing in common will be that you and I will take positives from our situations.
When I got out of surgery and looked at my body in the mirror - permanent stoma and all - I uttered the words "what have I become". I was horrified.
Now when I joke about my stoma to my work colleagues and friends, it's hard to imagine I once hated myself.
I believe what you are experiencing is the same thing I went through, but added to that you have a divorce to try and get over. You cannot expect to do that alone.
Go online right now, search for a counselor in your area, grit your teeth and go and have a session. I dreaded it.
One thing I realised is that I cannot do this alone. Yet ironically I realised only I can help myself. So I went and had counselling during my treatment. It changed my life more than the prospect of dying/living after cancer ever did.
Everything becomes normal in time. Time is the key. Concentrate on each 24hrs. That's all I did. I didn't think about the future, just the day ahead that I could control.
It is scary. You've got to get to that mindset where you can accept what is happening. But you need help to do that.
1. You're here to tell the story and here to find time to worry, so we are on a good start.
2. Your surgery is as standard as surgery gets, difficult for you, easy for the surgeons. The stoma opp is 150 years old, walk in the park.
3. After your surgery whatever you are going through, know that every single one of us stoma owners goes through the same thing. The self-hatred, the crying, all that. But know that soon it will become normal. And know that I have a million and one tips to help you cope with your stoma. Today I don't pay it any attention.
If I could go back and tell myself one thing, it'd be "whatever is happening to you, is supposed to be happening to you, so just relax" - and all those tough times help me cumulatively cope with any tough times I have had since, and will face in the future.
Talk is cheap Dave, I know, but I really hope you can take my words as gospel and relax. Not saying it's going to be easy, but it will get easier and easier.
Happy to help you more directly if you want to have a chat privately, and good work on posting on the forum my friend, you are already helping yourself.
All the best.
Firstly, I'm really sorry you find yourself on here, as wonderful as most people are I think we'd all prefer not to be on here. Much of what I say I've posted before, people must be really bored of reading it and it will repeat a lot of the good advice offered by others. I was diagnosed the week before Xmas, in 2017. Like you it was totally unexpected, so much my wife, a Dr didn't bother to come to the scope. Also, like you it was a very blunt diagnosis, "I 'm going to stop this you've got a large tumor, looks malignant to me," with the scope still in place; I actually preferred that matter of fact approach. You are in THE worst part by far in my opinion, only an idiot would say don't worry, but I'm sure the reality will be better than you expect. I found myself getting irked by trivial things. As it was Xmas - the radio kept telling me it was, ‘the most wonderful time of year’, I didn’t agree. Also, I suddenly noticed the sheer amount of ‘cancer adverts’ one encounters on a daily basis, they suddenly seemed to be everywhere. I also got exasperated with the 'hand holding/head to one side type offering advice such as ‘be brave’ as if it was a conscious choice to get cancer. I took to saying, 'I'm fine, but what the hell is wrong with your neck?'
You will probably be desperate for some accurate information that's relevant to him, I'm sorry to say there is none until the New year. Prior to going in hospital DO NOT GOOGLE anything. I looked afterwards & found there's some very weird and not very wonderful stuff. If you have any questions, and you will do, ask the team who will care for you, or the support lines on here. Google is to be avoided at all costs, I looked after surgery. My favourite was a woman living on the California/Arizona border. She advised giving up all food completely and sitting outside for 8 hours a day to take in the 'nutrients sent by nature', clearly she had never wintered in Liverpool!
Try even to focus on things you do as routine. For many in Liverpool life is measured in football and so it is with my family it. I went back to Anfield a month to the day after surgery - recovery is that quick. The surgery was nowhere near as bad as I thought it would be, the most painful moment was when I persuaded my wife, a hardworking doctor, to take a break from looking after me and go with the rest of the family to see LFC Vs Spurs. Mo Salah scored a brilliant goal in injury time and I inadvisably tried to leap off the sofa in delight; BIG mistake, that hurt.
A stay in hospital was entirely new to me I’d never spent any time in one before my surgery, I was even born at home. Hospitals are hot, the Royal Liverpool was at sauna level in January! I spent the entire time there in a pair of pyjama shorts, get a size larger than you’d usually buy, and little else, no top or sheets, it was too hot The heat and the fact you will hardly eat anything at first means drinks are really important. The g/f of one of my son's had a relation who had just had the same operation - she visited armed with frozen fruit drinks one day & a Costa to go go another; both wonderful. I had the op on a Wednesday and left hospital on the Saturday, three days later. You are going to be far more comfortable at home. Once home you are going to sleep, a great deal. The post-surgery time was for me far easier than the weeks before, I hated the pain killers so stopped taking them, and I am definitely at the 'wimp end' of any pain scale. It was a week before I went out of the house, but I was back to walking 10,000 steps a day within three weeks. I started post-hospital on a low residue diet, although n hospital my first meal was split pea soup and an omelette with sweetcorn, very low residue! I hated the diet so within a week was having a smaller portion of what the family were having; chili and curry were soon back on the menu. Yes, some things proved 'challenging' but I found that was true of all foods so took it as it came. I also took up running to raise funds for Cancer research. I thought I disliked running, I now know I absolutely detest running with a passion, but have made the ‘Scouse 10k’ an annual event.
The period which you are enduring is by far the worst. Things DO get better. In January 18 my thoughts/worries were everywhere, but they soon returned to focusing only on how the Reds were doing. The waiting pre-op is awful but somehow it passes. Post- surgery in my opinion is much easier, partly because you will spend so much time asleep. Now I think in the future if 2018 is mentioned my first thoughts will not be about the diagnosis & surgery, instead they will be those fantastic nights when Liverpool rolled back the years and destroyed Man City & Roma in Europe. Since surgery we've also traveled widely including SE Asias, S. America & Antarctica and of course Madrid; so don't believe all the post-treatment horror stories.
I am sure you are justifiably worried about what the future holds; Youtube two things:
Hope everything goes as well as possible - if there's anything I can help with feel free to ask. I apologise for the length and random nature of this post.
Many thanks for the positive reply. I’m spending a bit of time going through it and the ones from the other kind people who have sent supportive replies.
im taking all the positive feedback on board and feeling stronger mentally already.
Thank you all for your positive responses to my post. I’m lifted by reading other posts with your stories.
My tumour is very low and awfully close to my anus. It’s staged as T4, N2, M0 and I have no idea what that means! I’m not googling it!!! I would love the treatment to shrink and cause it to disappear totally but I have no idea how possible that is?! Not a clue. Not really had chance to ask these questions yet. In the meanwhile I just panic and have morbid thoughts. My youngest daughter is almost 12 and was told last week that I have cancer. Because of my upcoming divorce, my wife said she no longer has any feelings for me, I only see her fortnightly so today will be the first time I see her since she’s been told! Wish me luck for a non emotional afternoon! Other than that, I’m working on trying to be positive! You guys and girls are helping, so thank you all so far!
I was lucky that my tumour shrank by 1/3. I’ve seen other people’s post who have had an even better result so fingers crossed for you. Hope your visit is going well.
What a terrible start to this new decade, but you are where you are. I was diagnosed in 2012 out of the blue, and at age 46, it wasn't something I thought I would have to face. I had my chemo-radiotherapy, then surgery followed by some mop-up chemo. I knew from the outset that I was going to have a permanent stoma, and in the beginning, I thought that was it. My life would never be the same. But having a stoma is not life-limiting as you convince yourself it will be. All through my treatment, and even after surgery, people who didn't know me didn't know what I was going through. The side-effects of chemo-radiotherapy were barely noticeable. The surgery is major surgery - you walk in to hospital one day perfectly fit, and after the op you need a lot of help to do simple things, but over time you get back to where you were before.
After my treatment I changed jobs, and have been in a job that I love for the last 5 and a half years - I would never have changed jobs if it wasn't for my cancer. The people that I work with don't know I have a stoma - that's how fairly easy it is to live with a stoma!
We all get good days and bad days, but so does everyone else. Take each day as it comes, see your treatment as your 'job', prepare for your surgery, and prepare for a stoma. It really isn't that bad - I think for many folks it's just the fear of the unknown!
Hope your afternoon goes ok. We are all here to help you through every step of this - all you need to do is just ask!
thank you so very much for your message. I took a lot from it and I’m so pleased that you have coped so well with what you had to face.
Everything came at me one by one last year and each thing knocked me back foot by foot. My wife decided she’d no longer any feelings for me and yet I had cared for her and loved her deeply for thirteen years and bought up our daughter who is eleven. Then i had an infection, pneumonia plus sepsis, so was hospitalised and just had the support of my elder daughters.
Then was rushed to hospital with a rectal bleed. I lost two pints of blood but still nobody found the tumour for over two months!
my GP found it on Xmas Eve and on NYE was having a scope dvd they said: it’s malignant!
two weeks ago, they told me that I’d need a stoma and six months chemo post surgery and radio/chemo beforehand.
Im lost in my head and just feel like the world is ganging up on me. I’m not thinking suicidally but I can see why people lose it mentally.
my two eldest daughters are a brilliant support for me plus I have found the most caring girlfriend who met me before my diagnosis and didn’t run for the hills following it. She’s taken me to every appointment and truly cares which upsets me so much.
your story makes me realise there is something worth living for! Stand up and fight to live and enjoy every day!
well done on your life with stoma. Thank you for sharing and giving me hope and strength to carry on.
Wow you really have been through it, but see 2020 as the beginning of your new chapter in life - you're going to get all your treatment and recovery this year, your new romance is going to work, and you're going to manage it all just the way only you can! We are all different in how we approach this, but setting goals helps - small achievable goals. Don't think too far in advance, concentrate on the next goal. You have some wonderful support from your family, and that will carry you through. You will meet some amazing people at the hospital, and you'll find out soon that you have a team of professionals who will be working their best to make sure you get through it all. And, of course, we're all here to help however we can, and don't forget that!
You can do this... and just think... as spring approaches with all the significance of new life, so too will you!
Linda :-) x
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