Struggling following hubby’s diagnosis

roses26,

You have come to the right place as many of us have experienced both sides of what you describe. The general advice is "don't search the Internet" as it can lead you up many strange paths. At the moment there isn't much you can both do and you must wait. MDT meetings are closed to patients as far as I know. A treatment plan will soon be established and then your husband can start to fight back. Click on my name and you can read a typical personal account of the treatment and time scale that might apply to your husband. All is not lost! Any queries or concerns - just ask and you will receive replies based on facts. Don't worry about things over which you have no control and deal with only the facts that you know: no-one knows the future.

Dulac

Hello Roses 26,  I know it is easy for me to say now as I had the same diagnosis as your hubby, and that was just over a year ago, and as you say its the waiting that is the worse.  Lets hope he does not have to wait too long for his scans etc.,  I know it is an awful time for your hubby and also for you, but once things start moving it gets better, once you know what the plan is, what treatment he is going to have.  I had the scans and a tumour was found low in the rectum.  I was put on a course of chemotherapy and Radiotherapy.  I had to take a chemo tablet in the morning and then go to the hospital for radiotherapy, come home and take another chemo tablet.  I had to do this every day for 5 weeks.  I must admit is was very tiring, but got through it, and then several months later had an operation to remove the (shrunken) tumour.  I had to have a stoma, which to be honest is not as bad as some people think.  Although its not something I would have chosen to have, its not a problem now it is so very easy to manage.  I can understand him not wanting to tell your adult children at the moment, as it will be better once you know what the plan is, and you can better explain it to them knowing something has been put into place.  I am sure your husband is in shock, I think you cannot believe it is happening, one minute life if fine, and the next its all turned around and he must feel he is in limbo at the moment, but it will improve once things get going.  Hope you have some friends you can talk to, because its a horrible time for you also, but try and stay strong as he needs your support now.  My husband was great when I was going through it, he never made a fuss of me really, just acted as though every thing was going to be alright, and he was right everything was alright.   So if I am anything to go by, I got through it and am now cancer free.  I hope and pray your husband has the same outcome...try and stay positive.

Hi Duac, thanks so much for your reply.

I’ve clicked on your name as you suggested and read your story, which is very helpful.

Sorry, I probably got my wires crossed about an MDT appointment. I think I should have said an appointment with my husband’s consultant, following the MDT meeting.
My brain is all over the place at the moment.

Hi MaryChar2046,

Thanks so much for your reply. It’s just so good to speak with someone who has been there and thankfully had a positive outcome.

While I do not know what lies ahead for my hubby, just reading your own experience has given me some hope. Understandably, he isn’t feeling very positive at all right now, he says he’s being realistic and is steeling himself for bad news. I can understand why, he’s scared and who wouldn’t be after being told they have cancer. I want so much to be strong for him so, in my mind,  I am trying to think positively (and I am not an optimist by nature, if I’m being honest with you). I figure that right now, until we both sit down with the consultant and he tells us how things are looking, I need to have some hope for the both of us, even if hubby finds that impossible. I think it’s just the shock and the speed at which this has all happened, like you yourself talk about.

Earlier this week, everything was normal and now, as my hubby said earlier on today, ‘I have cancer’. It always seems to happen to other people, until it knocks at your own door. Then reality hits hard.

Once again, thanks so much for your kindness, good wishes and for reaching out to me. You have no idea how much I truly appreciate it at this awful time.
Take care.

Sorry you are in this position too.

We are in a similar position but a few weeks ahead of you having had our first appointment with the clinical team this week. The anxiety between the colonoscopy and that first meeting was unbearable and as you say you always fear the worst. Once you know the full situation it will hopefully become a little easier. It may not be your diagnosis but your reaction is perfectly normal under the circumstances… your world just got turned upside down too. 

I found it helpful to have some idea of timeframes so I knew what to expect. For us my husband had colonoscopy on May 4th. Like you they found a rectal tumour after rectal bleeding. He had CT and MRI the following week and then we had an appointment with the surgeon on Wednesday (22nd). We received diagnosis of T3b, N2a, M0. We have appointment with the oncologist booked in for June 3rd where we will get full details of treatment plan. But we are heading for TNT (total neo-adjuvant treatment) for 6 months. Chemoradiotherapy followed by chemotherapy probably starting in 3-4 weeks.

Me and my husband also had a very different response to the news. My husband did tell close family but preferred not to talk about it at home. I on the other hand felt I needed to talk to people and found being on here and connecting with people who understand what you are going through very helpful. I also reached out to a couple of friends who I felt more comfortable having the negative difficult conversations with that I couldn’t with my husband.

Talking to the kids and the impact on them is something I worry a lot about. Ours are 4 and 7 and I hate the idea of them watching their Daddy go through the next few months and I’m terrified of him not being able to see them grow up. I think finding the right time for you to talk to them is important and as you say those conversations will be easier once you know more. We have started to talk a little bit to the eldest but still need to have a lot more difficult conversations and haven’t told them yet we are cancelling our summer holiday which they are so excited about.

It feels like a very lonely place but you aren’t alone. There is a lot of support available. Reach out whenever you need. You sound like you’re coping better than I was at first and just getting through each day the best you can is all you can do right now. When you do get an appointment I have found everyone at the hospital very supportive and positive too.

Hugs.

Hi roses26 and a warm welcome to the board. You’ve had some fab replies so far and, as the others have said, once there is a treatment plan in place then things will honestly feel a bit better.

Ive attached a link to a booklet that I was given at my first meeting that a lot of people have found helpful 

https://bowelcancerorguk.s3.amazonaws.com/Publications/Bowel_Cancer_UK_Your_Pathway_V10.pdf

I had the same experience as your hubby in 2016 - rectal bleeding but convinced myself it was a lifestyle change or haemorrhoids and didn’t go the doctors until well over a year later before we were due to go on holiday - I could see the tumour on the screen and they told me that they were 99% sure it was cancer. 
Bowel cancer is notoriously slow growing but very treatable and they told me at my first meeting that they were treating me with ‘a view to cure.’ That was in 2016. I became firm online friends with another 2 ladies who were diagnosed at the same time with the same staging and we’re all still ‘no evidence of disease.’

The next few months will be tough but break it into stages and focus on each treatment in turn. I’m glad you’ve reached out to us  - everyone is at different stages of treatment and recovery and happy to help and support you both.

Take care

Karen x

Hi Scientist44,

Thanks so much for your kind words and sharing your story. I’m so sorry that your husband has been diagnosed with rectal cancer and that you and your young family are all going through this too.

Explaining the timeframe to me was helpful. I think my hubby may need to wait several weeks for his scans though. It probably depends upon which part of the UK you live in. He was also told his biopsies would take 2-3 weeks for results. Only once the doctors have everything in front of them and the MDT meeting takes place will hubby be called in for an appointment. I’m going along too, he says he’ll probably not remember everything that’s said, so I’ll just do my best to try and take everything in.

During the colonoscopy, the consultant who carried it out mentioned the possibility of radiotherapy to treat the tumour and it does look like surgery will be required also - not sure of the specifics, it’s all dependent upon the scans and biopsies, so it’s just a case of waiting. Which is so awful, as I’m sure you yourself know. Our children are adults and keeping the news from them is the best thing at this point in time, until we know more. The youngest is at university sitting important exams. My dad is elderly and I don’t want to worry him, he’s been through a lot with losing my mum. My brother and family live far away. It’s not being able to share this with anyone, beyond this forum, that I’m finding so hard. I get comfort in talking right now, even if it doesn’t actually change anything. Hubby doesn’t want to talk about it really. Not even by phoning up the helpline or going onto a forum. It’s just the way this is all affecting him, I feel really sorry for what he’s having to go through but I respect his right to deal with things in his own way. He has told his employer the news, but that it absolutely must be kept private, as we have still to break the news to our children. I said to him he should phone his closest friend to chat, get support but he is just not prepared to do this. I’m not even allowed to tell my closest friend either, as it potentially runs the risk of slipping out before we tell our own children. I’m respecting my hubby’s wishes here for the moment but, without meaning to sound sorry for myself, which I’m not, it’s pretty hard on me. So, I’m trying to bear up as best I can by coming on here. Everyone I’ve spoken with so far has been so supportive. I might try phoning the helpline myself but getting the house to myself in order to do this and be able to talk openly isn’t happening right now as hubby is off work. But I may get the chance next week.

I think once we know more, have all the results and have seen his consultant, perhaps hubby might be willing to begin to tell others. My focus is on our children and how to tell them. Until then, I’m just taking it day by day, keeping busy with even the most mundane jobs to keep my mind a bit on other things. 

It must be very difficult for you and your husband with having such young children and trying to keep things as normal as possible at home. I’m sorry that you’re having to cancel a lovely summer holiday too. Our children have all flown the nest so at least it’s just hubby and myself at home and we don’t feel like we need to put ‘a face on’ with one another, although I know we’re each trying to be strong.

Thanks so much for reaching out, your support means such a lot to me right now. The world feels a bit less lonely since coming on here.

Sending hugs to you too and I wish you and your husband all the very best with his oncology appointment on 3rd June. Take care.

Hi Karen,

Thanks so much for your supportive words, sharing your own story and for attaching the information leaflet. That was so kind of you. I’ll get a chance to sit down later on and read through it fully but from what I’ve seen so far, it looks really helpful, especially explaining a lot of the medical terminology.

I really appreciate the advice you’ve given us about breaking it into stages and focusing on each treatment in turn. To be honest, I don’t know what lies ahead for us, but I’m hoping to stay as strong as I possibly can for my hubby. He’s going to need it.

I'm so glad I’ve joined this forum. Everyone on here’s been so kind, offering support, knowing what we’re going through. That means so much to me, to both of us.

Take care x

Hi Roses 26 my name is Dave. I have been through the Cancer journey that your hubby is starting on. I had. Colonostopy in June 2022 and found a rectal tumor which was very low down had all the scans and tests and got a positive diagnosis of rectal cancer on my 70th birthday in July , I also didn't want to tell anyone if my wife hadn't been at the Colonostopy I probably wouldn't of told her at first. So my treatment was a 5 day urgent high dosage radiotherapy then 4 x 3 weekly chemotherapy sessions then in March last year 2023 I had surgery and as the tumor was so low down my anus and rectum were removed resulting in a permanent stoma . I am now cancer free in my bowel,  of course every body has a different treatment plan and my experience may not be the same as your hubby's, personally I had no real symptoms or pain except the radiotherapy made me ill for about 3/4 weeks. Luckily Bowel cancer is very slow growing and very treatable. Unfortunately my wife had a Lung cancer diagnosis in December  2023 ( incidentally she had ongoing non cancer Bowel issues for years and had bowel and stoma surgery on same day as mine ) her lung cancer was very aggressive and spread rapidly and she passed away earlyApril i this year. I had a ct scan 2 weeks before she died to check the bowel cancer was gone and that was OK but showed something on my right lung then a pet scan a week later. The Consultant phoned me on the day after my wife died and con firmed a small tumor in right lung I was booked in to have part of lung removed on Thursday gone but staff sickness in operating theatres has postponed it till June 18th.  So I have experience of being a cancer patient and the spouse of a cancer patient my advice is look after yourself as well as your partner cancer affects family as well as patient I know waiting fot treatment plan is Very frustrating but listen to oncologist and stick with the plan, but leaving out the lung cancer problem reasure him Bowel cancer IS very treatable and is not the end of it all that it used to be and a very large proportion of people recover and lead good lives also if it eventually results in a Stoma it really is easy to cope with ,I basically spend 3/4 minutes a day in the bathroom on a slightly smelly and little bit messy job , so no real change there then. Good luck to you both and know you are not alone  all the people on here know what you're going through and all types of treatment have been experienced so help and advice are close at hand. Dave 

Hi Dave, thank you so much for taking the time to offer such lovely words of support, sharing your story with me, especially as you are having such a difficult time yourself. Im deeply sorry that you have lost your wife recently, that must be so hard. Yet you are on here offering me such kind support, which if I’m honest brought tears to my eyes. Everyone that has responded to my post has been so kind and its this kindness and a common understanding that means so much to me right now. I’m feeling quite emotional but doing my best to keep it in check for the sake of my hubby. It’s not going to do much good otherwise. 

Right now, as you’ll be aware from reading my post, it’s just the waiting that’s so hard. Once we know how the land lies as it were and the doctors come up with a treatment plan, we might start to feel like things are moving for my hubby. But it’s being stuck in limbo thats so difficult. And I’m sure you know this yourself.

My hubby must have so many things going through his mind right now, but he chooses not to talk about them, with me or anyone else. It’s probably his coping mechanism - a lot of men don't like to talk about their fears or feelings, especially with their wives and I know as well that he’s being strong for me. But I so wish he’d pick up the phone to his closest and oldest friend, vent off some steam. I’d go out to give him the privacy so I wouldn’t be around for the call. But no, he wont do it and I’m not pushing it. I just don't want him to feel alone in this. For the meantime, i just need to accept that he wants to deal with it like this and that his way isn't necessarily the path I would choose. We’re all different I guess. Men are different from women when it comes to dealing with their emotions. But thank you for saying that I need to look after myself too, I needed to hear that and I will try to remember this.

I wish you all the very best for your upcoming surgery on the 18th June Dave, I really hope that it goes well and that you’ll be back home recovering in no time.

Take care and again, thanks so much.