My husband finished his chemo in November last year, and has been in remission for 12 months last weekend. He has his next 3 month check up on Monday. So far, everything is going well. His chemo was probably as gentle and effective as we could have hoped for. However, everyday life is still so hard.
Cancer is never far away from my thoughts, and added to this my husband has really bad job stress, which means he's not sleeping, and often moody and difficult to live with. I'm dreading the day he wonders why he bothered going through chemo, so he could be healthy enough to be completely miserable most of the time. We're no longer sleeping in the same room, as his insomnia was begining to make my life impossible. I literally can't remember the last time we 'were intimate' (not suprising, with all that's going on)and I'm wondering when things are going to get better. He went to a therapist for the first time on Thursday, to help him deal with his understandable anxiety and depression. However, she seemed completely ineffective- very 'airy fairy' (not his style at all) and I really wonder if that's going to help. I was so hopeful that therapy would make our lives easier, but it doesn't seem as if it will.
At the moment I feel quite despairing. The average length of remission time for people with follicular lymphoma is 17 months- he's already done 12 months, so the next (?however long?) is going to be quite nervewracking. Generally speaking, the approach taken for this cancer is 'watch and wait'- how do you live while you're doing that?
I can't comment on the type of ca your husband has (I was colon)but i can certainly comment on the watch and wait. I have been ca free for over fourteen years. For the first five or six it was a case of you are doing well ,but you are not out of the woods yet. When you throw in the three monthly blood tests ,the yearly scans and the yearly colonoscopies it is a strain . For the first year I was in chemo. My wife could not even walk into the chemo clinic,it smelled strange and it frightened her badly.
My operation was extensive ,from sternum to groin. My surgeon warned me that a lot of nerves and muscles would be cut. He was right and for my wife and I that was the end of intimacy. For her it was also the end of our marriage. We struggled on for a few years but she was sick of me constantly being sick and worrying about medical expenses. She eventually asked me to leave. I did. We are still good friends. I understand her reasons. I now live alone and get by as best I can. The one point that I will make about ca is that it involves the whole family. It is not about individuals. We all have to survive the best way that we can.
In answer to your question ,I don't believe that it gets any easier but I do believe that we get stronger. I hope that your husband weathers the storm. I hope his ca stays in remission and I hope that you can find a way to be there for each other. I wish you strenghth. Ron.
For some it does get easier in some ways as time goes on but every case is different .It is very sad that at a time when couples need to mutually support each other things can tear them apart ,through no fault on either side . Another reason to say that cancer sux. I do hope things will improve for you .
Thanks Ron and Silly. Your insights were sobering and encouraging. I think the reason I was feeling so despairing was things actually seemed easier during his chemo (for our marriage, anyway). We were closer and stronger as a couple than previously. However, his job stress is putting more of a strain on our relationship than his cancer (and I know how ridiculous that sounds!)
We definitley still have good times together though. I'm feeling more encouraged and optimistic than I was a few days ago, and I'm sure we'll both be feeling happier after his next check-up (Monday afternoon). Now if we can get him into a better job, things would really improve!
Hope things are good for both of you.
Hi little stitcher,
More than often the fallout comes later - a year or two. I believe this is due to the fact that, at the time you are in survival mode, it's pure biological and primal survival. It's only after that, that the brain and spirit begin processing what was just gone through, then the shock hits, along with the tears and pain. Finally, you can grieve and process - something that there wasn't time for when the focus was on keeping the biological system alive.
Also, there is the added blows of "chem brain" (can search this well known side-effect), and post traumatic stress disorder(PTSD) to contend with, again, comes after the fact. The emotions run very high at this time, and the brain is (can be) in trauma.
A support group can be helpful, 1:1 counselling too, creative arts - gardening, join a "Men's shed", or other group, doing a building project, painting, bush walking, mosaic-ing.. (to express the inexpressible; trauma is said to lie within the non-verbal parts of the system so a start to dislodging it, and processing it is to do things that are non-verbal). Really working on a project that can allow time for reflection. Writing about it can help too. All depends what suits the person best, but highly important and valuable in my opinion (and experience) to take time out to acknowledge this healing process of the journey. Even to the point that it is scheduled and disciplined time consciously put away to do the "my healing project", state it and do it, not in an airy-fairy way :)
All the very best, and congratulations for getting through such a tough journey together.
Thanks Sarah. I don't think I was prepared for how long it would take for the dust to settle (so to speak). I've been a keen stitcher for years, and definitley couldn't have got through the last 18 months without my cross-stitch, so I completely understand what you're saying. My husband describes himself as 'completely not creative', so I'm not sure how he'd go for the idea of art therapy, but some form of self expression would be helpful I'm sure. Thanks for your encouragement!
Hi little stitcher
You'd be hard-pressed I imagine to get him involved in cross-stitch for sure! Why I mentioned more masculine tasks - tell him to go build a boat, pergolla, or a time-machine :)
Somany people say they not creative, you have to get around them by calling it a "project" or "task" or something ;)
Good luck 🙂
i was dx with lymphoma stage 4, having chemo now,little bit depress,little bit confused.if it is ok with u please share with me,how u & ur partner are going through this difficult time.
hope every thing will be as uwish to be & this xmas will bring u more close then before.
Hi Multan, things are gettng easier. I'm having counselling for an anxiety disorder (which has been going on for years, before Chris was diagnosed) which has been helping. His last check up (in November) was really encouraging, which also makes it easier to relax. He needs another check up at the end of January, but no blood tests. Because of this, we've been able to spend time doing fun stuff together, and getting back to enjoying life.
How are things with you? I hope you can have a relaxing and enjoyable Christmas. love Emily
I agree totally with Emily..we are dealing with GBM but for the first 18 months were fairly ok...now we are hitting a dark stage..personality changes, him lashing out at my son in a big way..he doesn't act like an adult and to expect my son to tolerate him is questionable at the moment as I have explained as much as I can about the illness to the kids but clashes happen...I already also had an anxiety order plus PTSD so go figure....I hate to say this about my hubby but he is causing so much unrest in our family..eg when we go to bed etc it is driving us insane. enjoy xmas as we will try to as wellxx
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.