Supporting my husband is getting tough

Hello Jane (JaneL26) 

I am Brian one of the Community Champions here at Macmillan and you can normally find me on the Prostate Cancer group although I do go "walkabout" from time to time.

I have read your post a few time and can understand your feelings - yes you are right to feel like you do and yes this is the best place to vent.

I do come across this situation more often than you would think - and I put it down to us men thinking we are perfect, nothing ever gores wrong with us and people want to mess us about. Yes it's hard having cancer but I hope once he's had the TURP operation, it reduces his pain and puts him in a better place (If you click on my name or avatar you can read my story - I had a TURP in November 2022). If you have any questions about this feel free to ask me.

All I can suggest is that you hold onto the thought the TUPR and the following immunotherapy will sort him out and his feelings and attitude will improve.

Do remember our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) is there for you and you can chat to a human about your feelings.

I hope my ramblings help - please do get back to me if you need any support or information.

Best wishes - Brian.

Hi JaneL26 

It must be so hard being the carer (I was the patient with cancer) and you don’t need to apologise for saying how difficult this is for you. It’s definitely a safe space for you to say what you feel with absolutely no judgement.

I did wonder from your post if you might mean that your husband was due to have a TURBT, rather than a TURP, since you said he has non muscle invasive bladder cancer?  The TURP you mention is a different type of procedure for the prostate rather than the bladder.

I  see you are already a member of the bladder forum, so that might also be a good place to post and find out more. I’m a member of that group because I had my bladder removed due to a different type of cancer, but I’m aware that the TURBT is a very common and straightforward procedure which many group members have experience of. There  are members too in there who are caring for a loved one with bladder cancer, so you may find that helpful too.

I feel you’re just being honest, not moaning, as cancer patients can be difficult to care for! There’s no handbook for this, and we don’t know how someone will behave after a diagnosis. Personally, my attitude was to get on with it. I didn’t cry or curl up in a ball, but we’re all different. My partner is extremely calm and pragmatic, which it seems you are too, and being honest I found that perfect for me. We were both focused on getting through everything in the best way possible. 

I hope that CBT can be helpful for your husband, but it’s not successful for everyone, as you really have to want to help yourself both mentally and physically. Are you able to speak to your husband honestly and tell him how you feel? Not as easy as it might seem, I know. But you, as a carer, need to be able to say how this has affected you too. Everything would seem to me to be going positively, yet he is looking for issues. The TURBT is a minimal surgical procedure, there is a plan in place for further treatment. I hope in time he might be able to focus on that. I lost my bladder, and didn’t even have bladder cancer, so things could be much worse!

Sarah xx

Thank you for your support, it is good to know that my feelings aren't completely unreasonable, I will chat to him too but I know he will likely push back. 

He had a TURBT when he the biopsy and they removed the cancer and did a chemo wash. However it was in the prostatic urethra and the prostate was enlarged so they have suggested the TURP followed by BCG infusions to make sure it stays away.  He had a bad experience with the catheter last time and retention to I think all that is on his mind too.

I'm glad to say we had a cancellation and he's had the TURP done today.  Surgeon is pleased and hopeful the BCG infusions will work too.  He was quite positive and matter of fact so I'm hoping my husband realises it's not the end of the world now ️

Hi JaneL26 

Thanks for the extra information you’ve provided, and I apologise for thinking you might have meant a TURBT. I can see now why he needed the TURP followed by the BCG.

Now the TURP is done, I hope your husband can find some positivity going forward. There are lots of very positive posts and discussions about BCG on the bladder forum-I wonder if you might find it helpful to tell your husband the positive stories, and see if he might find this encouraging in itself?

I hope he takes heart too from the fact that the surgeon believes things have gone well today. A difficult experience before with the catheter and retention will absolutely be playing on his mind, but I hope things are on the up for you both.

Sarah xx

Hi Jane, how's your husband doing now? I'm in a similar position to you and I know how frustrating it is, and how guilty it can make you feel for not being as patient as maybe you should... 

Worse tbh, he's on anxiety meds now, he's really struggling, not sleeping and every twinge or side effect while the meds settle down, he thinks is another problem, last night he wanted me to call 999 as he thought he was having a heart attack 
It's not fun at the moment, I'm running out of steam that's for sure.
He asked me to take him to A&E today, I felt a bit mean as I said I couldn't sit for 4 hours there with him again, I left him to it, deep down I was pretty sure it's all in his head. He's home now and apart from his blood pressure dropping when he stands up, which I think is due to Sertraline settling down, nothing else abnormal.

He had TURP 2 weeks ago and everything went well, catheter removal was Ok, no idea why he can't move on and see it as a positive.
BCG starts 15th Sep so he needs to be in a better state by then or they won't do it.
He's lost 8 kg and shuffles around like an old man at the moment.

He doesn't want me to leave him, I feel completely trapped and don't know whether to call for medical support or mental health at theoment.

Hi janel26, my husband is very similar to yours. He worries constantly about everything, takes his blood pressure for hours until he gets a reading he is happy with, asks me to check his catheter constantly and needs reassurance beyond measure. You are doing an amazing job looking after your husband. It is scary for you both…delving into an unknown world but you are doing a great job. You need to keep in contact with the world outside of the situation your husband is in. Regular contact with family and friends is really important to help you and give you the energy to deal with the stress and anxiety of it all. I rant on here often. People here are kind, listen and give wonderful words of wisdom,encouragement and advice. Keep ranting to keep yourself sane. Sending hugs and empathy xx

Thank you so, so much.  I thought things were improving, his anti anxiety medication has changed and he's slept better for the last few evenings.  But then last night he wees out a couple of blood clots and goes into blind panic, -  he's getting a blockage and then retention and will need a catheter and they won't start BCG next week, where as I say that it might be a positive and be last bit healing from his TURP and might have been what was causing him discomfort? There wasn't anything we could do at 11pm last night.  I swear he thinks I'm not on his side, but I can't keep taking him to A&E and getting the same answers.  When or how will he start to try and see that this isn't life ending and get on with it? To be honest I'm starting to dread the BCG therapy as I can almost guarantee he will get every side effect and it will be awful for him.  I don't him to read any horror stories but I need him to know that a lot of people have more serious problems than he does.

Thank you for your kind words x 

I am in a similar position. My husband was diagnosed with metastatic kidney cancer 4 years ago. He has had various treatments and is currently on Cabozantinib. Unlike your husband, he has never had any pain from the cancer. The soles of his feet are sometimes sore, though usually there is no sign of soreness and it isn’t neuropathy as he has no tingling or numbness. He has cream which sorts it. H has always been thin and is currently eating at a level that causes weight loss but he refuses to point blank to do anything to help reduce this, such as snacking if he can’t eat a big dinner. He has become toddl like as regards food- taking an aversion to all vegetables when they used to be a big part of our diet. He says he does not have any problems in his mouth or throat yet cuts his food into minute portions, cutting each carrot ring in half, so e meal takes ages. The only thing he’ll eat a lot of his filled pasta- ravioli etc, shop bought. He eats a double portion of that but wouldn’t if he knew! He looks like he’s being poisoned and particularly rejects home made food. This is difficult for me; as well as it being much more nutritious, making food for me is giving people love as well as food. It often feels like he blames me for his cancer when actually I have fought for him when he wasn’t getting the services he needed. He continues to play bad and pickleball every week and is physically fit but weight loss will decrease his muscle mass. We go away for short breaks frequently and have just come back from one. I picked a hotel that serves tapas, so he wouldn’t be ove faced and we had them the first night and he ate as much as me,  . The second d night he chose a large plate of food, messed about with it , looking as if he was being poisoned and left a lot of it. This makes me feel we can’t eat out as it is so embarrassing and not fair on the hotel/ restaurant. He makes things worse for himself as he won’t take the antidotes available to him. In addition he pretends he has an acute hearing loss when I have seen the evidence and heard the audiologist say it is mild to moderate. It takes him a long time to process what is said and I think that means he do bother. Quite often he hears what is said but doesn’t bother to reply. He lives in his own world. I have told him there are online courses to help with auditory processing problems but he doesn’t do them. He has brought me to breaking point so yesterday said he would go for counselling but I don’t know if he will and he probably won’t be honest with the counsellor. Like you, I feel totally alone. I have one friend I can talk to but ever else only sees the public face if my husband, which is very different to the one I see, so am very happy to chat with you and share any thoughts on what to do if I can find any. I fully accept that a point will come when our lives will be restricted when he does have pain and becomes very weak but am very frustrated that he should cause it to happen before necessary and that he can’t see how lucky he is to be still painfree and able to do any activities he wants to do. Take care, you are not alone

So sorry to hear about your problems last night. Our husband sound similar in the way they catastrophes . My husband ha been sick 3 times during the last 4 years and regards each time as a major catastrophe , even though each time he is only sick knce and there has been a specific reason for it. He forced himself to be sick last Friday and tried very hard to be sick again, unsuccessfully. It was because he had forgotten to take his stomach protector medication away with us, I’ll have to check his medication next time we go away but that will probably result in bad temper and him saying I treat him as if he is stupid. I hope your husbands blood clots are an indication of healing