We understand that people with cancer are worried about coronavirus.
Here is the
We will update it regularly.
I was diagnosed with colorectal cancer back in March 2017 - was a T3/4 N2 M0
I had the usual 5 weeks of radio / chemo therapy which finished mid september with an 80% reduction in the cancer (yeyy!)
Jan 16th I had an anterior resection with ileostomy - without doubt one of the lowest points in my life. I was in for 2 weeks, had strep A in my would which they were worried could easily turn into necrotising thingy flesh eating bug hence tons and tons of antibiotics.
During the first 3 days after surgery if there had been a button to press to end it all I would have pressed it.
Around day 7 i suddenly had a turnaround - within 24 hours i went from feeling terrible to feeling hopeful and grateful for life. I had many challenges, not least the fact that my stoma decided to pour out 3 litres a day of fluids, meaning more drips and rapid weight loss. I lost 25lbs in 2 weeks (i could stand to lose it anyway)
I was finally allowed home, all the time i was worried for my wife who is quite a lot older than I and doesn't drive or handle many things well but she had done an amazing job.
Following the op the surgeon gave me good news - they got it all and path staging showed no lymph node mets and they were very very confident.
Today I went for a check up - it's just over 4 weeks since the cut. They told me that i have a small cyst on my liver which they saw / felt during the op (first time mentioned) and they want to do a baseline mri on it. nothing to worry about, most likely caused by the pre-op chemo.
So, i see it that i'm now cancer free, infection free and by the looks of it my ileostomy might be reversed much quicker that i originally expected - could be as little as 3 months as no post op chemo is needed.
Why then, when i've beat this bas&*^rd, do i sit in my home office and cry at least 3 times a day? music, movies, sometimes just a picture or comment on facebook tips me. even now i've got tears writing this.
I'm lucky to be financially secure - my business runs itself and does pretty well, i adore my wife and it's mutual. I have a strong support network and some really good friends and family.
so why am i so sad and lacking in hope or a vision for the future. It's like i don't care about life at all. There's bound to be more sh1t around the corner right? - it's all pretty pointless anyway cos we all die at some point and in 50 years no-one will know, think about or will give a toss about anything I did, went through or survived.
Despite being a very good self help kinda guy and i'm pretty smart, I just can't find a way to lift this cloud of despair. I know all the psychology, what i should do o change my state etc - it just doesn't make any difference.
anyone else that has actually won this fight feels the same way?
or is it just me?
Hello Soultrader. I noticed your post and just want to offer some moral support. I am no expert, and I don't understand all of the technical terms regarding your cancer (mine was a different sort). BUT it sounds like you have had an enormous amount of traumatic things happen to you and I think it is no surprise that you feel completely battered by it all. I am so sorry you feel despair, please don't be too hard on yourself. You mention your friends and family - do they know the details of your surgery, treatments, infections? I imagine they would feel some admiration for you managing to get through all that. I know I do! I needed less treatment than you and I think I am doing ok but only this week someone mentioned they think I am still in shock. So, it's obviously affected me more than I thought. I don't know that one needs a vision for the future at this time, I think it is about getting through each day (which is a success!) and hopefully things get easier as we get along. I think it is good that you can identify what you are feeling and explain it. Have you got a specialist nurse you can speak to? Or your GP? I hope your feelings improve. Chin up.
Thanks littlerunner, appreciated.I'm down again today, After the appointment yesterday and the optimism of a early reversal of the stoma I started reading on here the experiences of people that have had the reversal. I had no idea of the timescales involved in life getting 'normal' again - we are talking years in some cases. during that time we begin with like 30 trips to the loo A DAY, very little bowel control and having to always be close (like within 10 feet) of a toilet.I read another post in this group where someone said "I miss my life before cancer" and this put it into a nutshell for me. My old life is over - things will never be the same and I hate that. My life was good, full of dancing, trips out and away, enjoying food with friends several times a week. My life was good and now it's going to totally change.
Sorry for those of you who will say "get a spine man and grow a pair" I most likely will, but right now i'm grieving for what is no more.I know that there are lots of people worse off than I, but just because others have more and worse circumstances doesn't mean that my situation is one i can just pass off.I'm working on it, bear with me.
I almost fell off my chair when I read your 50 years comment - that was exactly the way I felt straight after treatment indeed I wrote a short story in which the lead character says exactly that sentence. I went through unhealthy doses of nihilism, an existential crisis and the fear of the sword of Damocles. Indeed, I would argue the emotional impact was sometimes worse than the physical aspects. I am now just over 2 years post treatment and I promise you it gets better. Time is a great healer - it is still very early days - you are likely to be experiencing the symptoms of grief and it will take time to work through that.
Just be kind to yourself, take one day at a time, stay in the day, and I bet that soon you will notice you have made baby steps forward. Your old life might never come back, but that doesn’t mean you can’t enjoy a new one.
Wishing you all the best,
What is a Community Champion?
Having read of your awful time dealing with your diagnosis operation and trauma etc I have to stick my nosy head in to offer some advice.
I've been on this site for over 4 years now and keep an eye on this Group regularly - so bear with me please in what I have to offer, in view of the fact I have seen many posts similar to yours in the time on here. What you are feeling is perfectly normal following such attack on your body.
I am a firm believer now that what the body and mind go through is a type of Post Traumatic Stress . After all your poor body has to go thru so much in fighting to get healthy again that the mind has been in "fight mode" then it has to process that things are better and can't quite get its' head out of "fight mode". Your body has dealt with so much and something has to give I suppose??
My advice would be to try and get some counselling organised asap - perhaps through a Macmillan Nurse? or your GP? and try to pour out your feelings with someone qualified but non-judgmental. Also to possibly speak to your GP about some anti-depressants to temporarily lift your mood??
I'm sure you're looking at what I've just said and saying "No No No" but believe me I have spoken to lots of others who have been thru such feelings and come out the other side. For the sake of your dear wife may I ask you to take some advice please?? We are all here for such a short time in the Universe we should be able to live it well.
I truly hope you'll be able to look on life in a different way soon and to relish the fact that, despite all you've been through, you're still here to enjoy the life you have.
Do come back on here to shout and yell at me if you like - it's fine I'm just at the end of a laptop LOL !! I really hope you feel better soon.
Love and Hugs
"You Never Know How Strong You Are Until Being Strong Is The Only Choice You Have "
What is a Community Champion?
Hi Soultrader, how are things going? I hope you are still moving forwards.
I'm ok thanks, had a good weekend - went dancing for the first time since the op last night (i'm a northern soulie) was good to get back to some normality and see some friends. really felt the love last night.Thanks for caring LittleRunner - and thanks everyone else for the comments and vibe.I'm sure i'll get there - just gotta get used to what I have rather than grieve for what's gone.
Shawshank: Get busy livin' or get busy dying' - Morgan Freeman
I choose the first.
Well - Get You - out dancing at the weekend!!! SO pleased for you - that you also felt love from friends, who presumably have known how poorly you've been??
As you say - You'll get there - I'm sure you are right and I truly wish you all the very best.
Love & Hugs
How are you feeling now? I have read your post and your story is almost identical to my husband’s although he is a few months behind you. He was diagnosed with stomach cancer in January this year and has had pre and post gastrectomy chemo with excellent results and prognosis. He should be relieved but has sunk into a huge depression and is filled with anxiety and despair. He can’t see the point in carrying on and cries constantly. This is very hard to watch and we are trying everyth8ng to help him through these feelings, including medication, counselling and trying to get him to enjoy life again.nothing seems to be helping at the moment. His work have been amazing, as have family and friends.
I am writing to see how you are doing now? Did things get easier for you? You original post was 5 months ago so wondered if you found your way out of the despair you felt then, and if so how?
I hope you are enjoying life now and are out of the nightmare that this disease causes.
Hi H, thanks for the message.
It's a hard road he faces - the really hard thing is that no-one really understands until they themselves have gone through it - not you, not friends, no-one but a fellow sufferer.
Healthwise i'm all good now - no cancer (they said they got it all) - ileostomy bag gone and side effects minimal.
Psychologically it's a bit different. I am enjoying life right now but that's probably because of the good weather and my mostly positive attitude.
However on saying that Cancer is probably the first time in his life that he's come to terms with his mortality. thoughts of 'what's the point, we are all dead anyway' go through his mind often and yes, i've been there and yes, it's still there from time to time. the worst thing is not being busy - if i get days and days of doing nothing then the mind creates problems and you just get thinking 'what's the point' but then it's difficult to muster something that you actually want to do. I've seriously taken up snooker!
The crying and tears are totally natural and should subside over time - but it does need time, give him that. when he is tearful just listen - don't offer solutions and don't get annoyed (which i'm sure is easy) just listen and offer no opinion. sometimes just saying 'yep, life is shit' can bring people to realisation too.
I was at the point where i would cry at the drop of a hat. watching a movie or even a silly daytime tv programme i used to sit there hiding tears. even in the car listening to music i'd start blubbering. Now (apart from last night when the wife and I had a good heart to heart session) I don't cry much at all and it's for the right reasons whereas before it was for anything.
In my case most of the things I was concerned about was not about me - it was thoughts of the people I love having to manage without me. I could vision them at my funeral, making the arrangements, learning to pay the bills, learning all those things that I was the master of - even how to change the channel on the TV to a different input for a DVD! - those are the things that I worried about so much and caused angst. It wasn't about me it was about them. seeing my wife learn things that she couldn't do before did help to settle me in that regard that she maybe could carry on.It's also about loss. he's lost control of his own body for a while and he probably can't see an end to it. years of after surgery checks etc till he's really classed as clear. loss of control over his daily life. Loss of his innocence really.There's also what I called an 'anti-climax' when things are going well with treatment. for weeks and months he's been working towards one thing - getting rid of the cancer. for me it was a driver of everyday life for a year. - when results are in and treatment over then you are suddenly a bit 'aimless' again. you just had the most important battle of your life - what can take the place of that?
No amount of medication or psychobabble will take away the feelings of mortality but what might help (believe it or not) are some vitamin supplements. my belief is that cancer and the resultant operations etc takes it's toll and imbalances your body - especially as his affected area is to do with the food chain and absorption of minerals / vits etc.. I found that I was Vit D deficient despite going everywhere with the top down on the car. I now take a vit d complex plus one berocca tablet (drink) every day. I'm pretty sure that it's helping me balance my daily mood swings and I do feel so much better. Maybe a blood test to check his levels could highlight something in particular. you didnt mention how old he is but my wife at 70 was found to be slightly anaemic - amazon order of a vit B and iron complex and she's like a new woman. - Just something you might try - takes about 3 weeks to see an effect. can't hurt right?
I'm much more controlled now emotionally and go weeks without issue.
It's difficult though - you just can't muster enthusiasm for things that you used to love doing - what's the point right? i'm dead anyway one day, why waste my time on crap?
I have kinda got through it now and it's not so often that these things surface but it does take time. To give you an idea I was diagnosed just over a year ago - first op was Jan 16th and my last operation was May 15th and was the last in my diary. they only want to see me once a year now for the bumcam session. start to finish it was a year out of my life.If he is still going through treatment then things are not so clear for him. sure he's doing well but in his mind it's still there and still ongoing. when he gets to the end of the treatment then he has another issue and that's getting back to being independent because whilst you are getting treatment you are dependent on them - the longer it is then the longer it takes to get back into life's usual routine. It's like being a prisoner and serving your time - when they let them out it takes a while to get back into life. being responsible for your own decisions etc - right now they are being made for him and for a man that's not good.He will get through this - and when it does turn you will notice pretty quickly, a matter of a week to 10 days and you'll see the change.Stick with it - he will come to a point that he realises that the approach of 'woe is me' isn't productive and he's wasting what life he does have.I truly hope this helps, I don't come back on here much anymore because to be honest I just want to leave it behind me. But i couldn't ignore your call for help.Lots of love to you all and I hope this helps
Thank you so much for coming back and for the comprehensive advice. I am really happy that you have managed to mostly move on and live and enjoy your life once again. That seems so far away for us at the moment, but I remain ever hopeful!
My husband is 51, we have 3 young children and he has an amazing, interesting job which he loves. We were very fortunate in life until this. He has always been quite an anxious type of person, always planning and worrying about the future, and the lack of control you talk about, has compounded his anxiety. In hindsight, he was never really able to let go and enjoy his life to the full, because of his deep seated anxiety and worrying nature. He was diagnosed with stage 3 stomach cancer in January this year and has now finished all treatment. We have the final sign off scans and meetings next week which are fully expected to be clear as they got all the cancer out.
I will definitely take your advice, and just let him talk. I keep trying to come up with solutions that might help, different counsellors, medication, food, groups etc
re vitamin pills, because he had his stomach removed, he has to have vitamin b12 injections quarterly as this is absorbed via the stomach. He already takes a multi vitamin and folate tablet daily, but I will get the hospital to run a full blood test on vitamins and minerals.
Funny, logically, he knows he’s one of the lucky ones, and is desperate to live again. He has been at home since diagnosis and his work are so supportive, there is no pressure to return by a certain date or anything, they have set up all his systems at home in case he feels like doing anything. I believe distraction and keeping busy are essential ( I make myself as busy as possible on bad days and it truely helps). However, he has fallen into this horrible cycle of sitting at home, getting more and more depressed and detached from life, and getting more depressed as a result so then even more unable to motivate himself to do anything to distract himself. He was always so busy before this, he travelled a lot for work, had a full life.
He is making an effort though. This week he went swimming twice and we went out for dinner for the first time since diagnosis. He is frustrated at the way he looks as he is gaunt now having lost over 3 stone, and will find it hard to put on weight without a stomach. He has lost most of his muscle mass so looks far older than he is, and has gone completely grey in 6 months ( chemo effects I think). So physically he feels v diminished which has really knocked his confidence, and that really doesn’t help.
i am sure we will get through this eventually, life will go on, and it’s a matter of time. It’s v hard living it and my heart bleeds for him and anyone going through the effects of this disease.
I am really grateful for your response, I see there is light at the end of the tunnel.
I will update you once he recovers.
Hi H, you're very welcome.
for your info i'm 54 so not a million miles away from him.
Before my cancer I was also very successful in online commerce, literally making millions. I did that through something that i and many others call 'drive' I was very driven for years.
Cancer takes away your drive because what you were working towards suddenly becomes rather trivial.
The way i've been working back to a 'normal' life is by finding something that drives me again. In business it almost runs itself because i set staff on in another country to handle it for me and i'm happy to leave that be. Before i was working 16 hours a day 7 days a week - i don't want to go back to that because it's just giving your life away for money. you only need so much.
However success was something that drove me so i've been working on another business project. that's what has 'bought me back' I have self esteem, pride and a feeling that i'm going somewhere.
I recognise that when you are 'driven' that it's the first thing you think about when you awake and the last thing on your mind before you sleep. being driven that way makes you continue to put one foot in front of the other and just keep going. That is working for me.
Not everyone has this 'driven' personality but it sounds from your reply that your husband has - if he's respected and successful in work then he will have been driven. you just dont get that way without drive. Most are just happy to go to work mon-fri, take the paycheck and a week in Majorca and they're happy. - nothing wrong with that of course, but it's not good for someone who is a driver to face that.
If this does sound like him then i'd like to make a suggestion.
To get back to life he needs a drive - but someone else has to give him a reason.
you say that work are in no rush for him to return etc. I don't think this is doing him any good.
Can i suggest that you get in touch with work and get them to giddy him along. he needs to feel needed and not humoured. get them to tell him that they are struggling without him and ask if he could do just a few hours to start with. but tell them to properly work him and not give him work 'just for the sake of it' - because he will know.
Put him to work, get his drive back for feeling useful and getting self esteem and I believe that everything else may just fall into place in the rest of his life.
A driven man needs to be more than a husband and father - he needs to be MORE.feel free to ignore this if it doesn't feel right to you. but from your reply above he sounds more like me. if it were me (and it is) this is what would work (and is)
By the way, if there's a chance of seeing this online then we should delete and continue by private message or email.
I truly hope that i'm helping you and i'm sending very warm thoughts your way.
Thank you again for the good advice. You’re exactly right about my husband, he was very driven and very tenacious and ambitious. I think the cancer and the treatment have really knocked his confidence for the first time in his life very badly. He has v v little cancer in his family, non in his immediate family and was always quite confident in his body and his health. He didn’t drink v much at all and worked out a lot, he looked pretty good for a man his age.
I think getting some serious work done would really benefit him. The problem he has at the moment is chemo brain, where he can’t even focus enough read a newspaper. His work is quite intellectually challenging, as well as being an environment in which confidence ( or the outward appearance of it and that whole image) is almost mandatory!
I will see if he can start little by little from home. We are in the same industry and I will start suggesting he gets onto his systems just to chat to me on line rather than on the phone. As his chemo fog lifts, I may then talk to his work about setting him some work. They are a US firm and V correct and above board in everything they do, so not sure they will do anything without his say so but I will try.
I will let you know how we get on. I can’t wait to leav3 this awful year behind us!
I bet you can't H
you have an advantage though in working in the same industry - at least you understand what he needs to be able to do his job.
I truly wish the best for you and your hubby to get through this together. it's hard for both sides and often both sides turn a little introvert without realising it.
sending you both lots of love and hope - I won't pray for you cos i don't believe in all that god crap but i will be thinking of you often in the weeks ahead. Please do keep in touch and ask me anything you like. i'm here for you
Hey H. two years on now for both of us. The lockdown got me into a dark place again and i came visiting here - how are you? hope you reply.
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: