Overwhelmed and in need of advice

Hi, sorry to read about your difficulties. Unfortunately I don't have any information for you with regards things getting better. 

However I can sympathise with you. My husband is currently going through chemo (different cancer) with a drip infusion then 2 weeks with chemo tablets. He is really finding it hard. He is struggling to eat (losing weight), in pain, feeling weak & useless, keeps saying that things were no where near this bad before he started chemo. He is only on his 2nd cycle. He seems to always get into more difficulty at the weekend when his specialist nurse isn't working. His is quite complicated so won't talk to anyone except the nurse or oncologist who know all about his case. 

He has a laxative to take every night but is also constipated (he discovered this at the end of his 1st cycle when they took him in for X-ray). It makes him more uncomfortable & he's not sure if he can take more laxative. 

I feel very useless as I don't really understand how he is feeling. It can be quite lonely. As much as family try to help & listen they don't really understand because they aren't living it. 

Thank you for replying. It was the first time I have posted about my husband’s cancer and was feeling pretty awful. I am sorry for what you and your family are going through and really hope things will improve. It’s very hard to cope when our husbands won’t talk and I did tell him I felt lonely and he gave me a hug. Friends and family say the wrong thing try to be too positive. I’m glad I found this forum. Take care. 

He has 2 sisters who are supportive but he gets annoyed when they message saying things like 'are you better today', 'hope you've had a good day'. He reads it as they think he will miraculously get better but I think they are just meaning a good day rather than a bad day & better as in better than yesterday rather than being totally better!!

He is usually a positive & active person but he seems to have periods when he is down but he won't accept that it might be useful talking to someone who isn't family. I feel he feels he has more purpose during the week as he runs his own business so even if he is having a bad day he will still be getting emails & phone calls for work so it would keep him busy. At the weekend he doesn't have this & he spends his day either lying in front of the TV or on really bad days he is in bed all day. 

I feel if he could just come for a 5 minute walk or even sit in the garden for a little bit it would help him but he just says he's got no energy. Yesterday his sisters came round to see him. He had been in bed all day but got up when they arrived. He was up for a couple of hours then he had some fish & chips with me & the kids before going back to bed. His sisters did say that he was looking like he had more colour in him & he looked better when they left than when they arrived. 

It feels like he uses any energy he has on other people whether its for work or for people visiting so I end up just getting the grumpy part of him!

Look after yourself too.   

I really know how you feel. I also agree being out in nature is so helpful and uplifting & wish he would get a little exercise and fresh air but he just doesn’t want to. I think he’s exhausted and just wants to sleep as much as possible but I think he’s very depressed and needs some hope. 

My husband went through similar treatment for throat cancer. Started treatment November and is now eating small portions normally. He had a phobia of a feed tube and we managed without it but there where days when he had little food intake. Husband managed 5 of the 6 weekly chemotherapy treatments but did all of the 30 daily radiotherapy. Hindsight is great so I would encourage the awful high protein drinks they offer plus daily throat massage and moisturiser to minimise the impact of radiation burns. I have always been a strong person but this has been my worst battle and much worse for husband... I have to constantly remind myself of this as emotion and moods can be tough. My main advice for you is find something just for you. I run and swim with a friend and make sure that I keep that time for me. The good news is that we were told this week that his PET scan is clear... so you and he can beat this. Sending you love and positivity x

Thank you. It’s so helpful and I will definitely take your advice. I am due back to work on 12 April so feeling anxious about that. But one step at a time. I’m impressed your husband managed without the tube because eating at all even after week 3 is so torturous. Everyone is different. I will tell him about your husband’s experience. It’s much harder than either of us imagined. But we will get through it. Take care

Did your husband use a nebuliser? Thank you. 

Yes recommended quite late for us .. about half way through treatment. Made a big difference with mucus build up which affected appetite and sleep. Couldn’t get on nhs so I bought one at Boots around £40 and then got the pellets ( salt water) on prescription. Definitely made a difference for husband so if mucus a problem I would recommend x 

That’s so good to know. Because of Covid I can’t go in with my husband to the meetings with the Team. He didn’t know what a nebuliser is when I asked him. Will tell him to ask them but not till Thursday... Can you recall the Make/ model or name of the nebuliser you bought? There seem to be a few on the market at that price. Thanks so much 

Hello again, did your husband experience constant nausea? Did he find any ways of alleviating that? Thank you