Feeling pretty scared and overwhelmed right now as we have just got my husband’s scan results back. He was diagnosed with T3N2M0 CRM+ rectal cancer back in May and has been through radiochemotherapy and then chemotherapy over the last 6 months in an attempt to down grade the tumour. Unfortunately although there has been some response the tumour is still closely associated with his prostate so the only surgical option to ensure they can try to remove everything with clear margins is total pelvic exenteration - removal of rectum, prostate and bladder with 2 stomas.
We have been warned that this is a long and complex surgery and although he is young (40) which will be in his favour the recovery is going to be challenging - estimate is 3 weeks hospital stay and 6 month recovery. We have a 5 and an 8 year old so I’m scared of them seeing their daddy going through this and also terrified of losing him. I’m trying not to be pessimistic but struggling not to assume that at some point in the next months/years I have to face losing my husband and somehow supporting my kids through that process. I just don’t feel like I will ever be able to cope with that.
Would be grateful of hearing about any personal experiences of TPE or general practical advice on preparing for major surgery. And also any advice on how others have handled such situations with young children…
How is anyone else coping with Christmas? I feel like I should be cherishing the moments I still have as a family especially given that my husband is feeling better than he has for a while as he has a break after chemo to regain some strength before the op. But I’m mostly just a mess and although the presents are wrapped and the prep is done if it wasn’t for the kids and everyone else around us for whom I’m try to put on a brave face I would probably just curl up in a ball and try and forget it was even happening!!!
Hugs to everyone going through difficult times.
It is most definitely going to be a mental battle for you.
In my case, I spent 5.5 weeks in the hospital, came home for 2 weeks in which my condition deteriorated rapidly then readmitted to the hospital for 8 days.
My husband worked from home for a few days each time I came home but had to return to work. So I was on my own during the day fairly quickly. It was less than ideal. Hard to say if I could have been left alone sooner.
We have neighbors that do not work (one is a young mother and the other is retired). We gave them keys and I had them on speed dial in case of an emergency like a fall. I never called them but knowing they were there was a great emotional boost.
There was one time when my colostomy pouch leaked and created a huge mess. I was in tears and cursing the universe but I managed. And my husband did the stuff I couldn't when he got home.
If you can arrange for family to come help in the beginning, then do so. My family not only lives far away but they are all basically elderly or disabled themselves so that wasn't an option for me.
I think short periods of being left alone are much more do-able. Taking time to run to the market or tend the children is not a huge problem. It certainly was less stressful for me to manage a situation if I knew my husband would be home soon. Can you work from home part time and go into the office for shorter periods?
Flexibility will be key.
Sorry I didn’t mean to suggest that this won’t be a struggle mentally from my husband’s side too. It just that as someone with a long history of mental health issues, the stress of the last few months has already taken its toll. Needing to be my husband’s primary carer, solo parent and take on the majority of my husband’s responsibilities at work (we co-lead a cancer research team) while not fall apart myself is going to be a huge challenge. Not that I’m complaining, I’m just trying to do my best to prepare myself for what lies ahead because I want to be able to be there for my husband when he needs me.
I’ll try and manage my husband’s and the kids expectations for the year ahead. It’s so hard on my husband as he already feels like he is missing out on important time and experiences with the kids - they grow up so fast at this age. I just have to keep reminding him that if successful this could mean that he will have a chance to see them grow up and that is the most important thing to focus on.
Thanks Susan13
I do have some flexibility with working from home but won’t be able to do that every day. I’ll try and cover at least a couple of weeks after he comes home between me and family. But having someone local who can come in an emergency definitely sounds like a good plan. Especially since I’m a 45min commute away at work.
I want to be able to keep the kids routines as normal as possible so if he will be ok for an hour while I take them to swimming lessons or other activities that would make things more manageable.
Obviously we’ll do what is needed depending on his situation and his recovery will be the priority. If I have to take some unpaid leave we will be able to get by.
Thanks again for taking the time to reply it means a lot to know there are people who have been through this that I can ask questions of.
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