DP being investigated for cancer

[ShiningGonnaShine]

I've NCd because I haven't been especially scrupulous about guarding my MN identity in the past and I don't want anyone I know to work out this is me.

My 45 year old DP is being investigated for bladder cancer. It's come as a real shock and we've both been knocked for six by the news, him especially.

He doesn't want anyone to know (yet - he hasn't had a biopsy yet so we don't know for certain it is cancer (although it seems likely) or what type/stage/treatment he's faced with) so I haven't got anyone to talk to IRL about this. Just wondering if anyone has any experience of dealing with this? How do I support him? What things should I be doing?

@ShiningGonnaShine it wasn't full bladder just partial but they didn't know until they got in how much they were taking. Her tumour was quite big too as she had left it a while before getting checked out.

Again, thanks everyone. Really appreciate it.

Sorry, I've just read over the thread again and noticed that I hadn't seen your post, @Ffsffsffsffsffs (love the username, btw!)... I think I must have cross posted with it this morning. Thanks for your message, really appreciate it. Glad your mum is OK

My dad had bladder cancer, was referred for a cystoscopy after having blood in his urine & they found a tumour, told him it was large & aggressive & he may lose his bladder. Went for a rigid cystoscopy to assess or remove the tumour, the surgeon managed to remove it all & it turned out to only be stage 1a. He had one BCG treatment when he came out of theatre & had to have cystoscopies every 3 months for the first year, then every 6 months for a year & then once a year up to 5 years from his diagnosis. It never came back, he was 73 when he was diagnosed & lived another ten years after. I also have a friend who was diagnosed age 44, she had her tumour removed & it has never come back. My dad's consultant told him that if you had to choose which cancer to have, bladder cancer is one of the most treatable ones with highest success rates.

That's really reassuring, @Nat6999, thanks so much.

ShiningGonnaShine. I'm so sorry to hear this. How are you all doing? This has happened to us today. Following lots of blood in his urine 3 weeks ago, DH has been given a diagnosis of bladder cancer. He can't go into hospital to check how far it's spread for two weeks because of COVID. Our world has fallen apart. I've just lost my job. So scared. Trying to be strong for him. Not sure how we will get through this wait. Kids are on half term next week.

So sorry to hear this

I'm OK Shining Hope you are OK, I'm scared of DH dying but at the moment we just have to await results. DH was scared today as he suddenly got called in for an immediate covid vaccine on the CEV list and when he looked that list up it was all cancer and chemo etc or similar which would mean his cancer was stage 4 or stage 3 if lucky and we've not heard results. He phoned doctor and they knew nothing. I told him to phone hospital and he did and they also say no results. My DS was behind him when he was telling me but neither of us realised until DH moved so I had to explain to DS that we were awaiting results for skin cancer for DH, thankfully DS was OK with it. DH already told DD and she keeps asking me when DH dies how will we manage this and I just have to tell her I don't know but we will find a way. I don't drive and am not working though thankfully used to earn a lot and have savings. I've been trying to get finances in order - thankfully the sale of our old house exchanged and completed this week so that is now sorted and got money from that. I would try and look into finances - being married does seem to help if no will - I feel a bit more in control now I have our finances so I could manage if the worst happens financially. Practically and emotionally I have no idea how we'ld cope but one problem at a time and I'm sure people would help and we will find a way through. We have to wait 4 weeks for results, been 2 so far, though leaflet says up to 6 weeks. The hospital said it looked very bad and other moles may also need to be tested and took off one layer then went no that looks really bad take a lot more out so not very reassuring.

So sorry you are going through this as well Why and you lost your job. I hope its treatable and caught early on.

So we are basically preparing for the worst, hoping for the best. I did see the odd one online like DH were they got an all clear so there's hope and if its early stage prospects are good. DH had a friend who died very quickly of it at a younger age than DH, very sad. At least our local hospital are good.

@Whydoesthisneedtobe gosh, I'm so sorry to hear about this . I know exactly how you feel - the wait is terrifying. Do you mind me asking what test your DH had to confirm the cancer? My DP started this whole process in November and has had various tests and scans since then but it was only 2 weeks ago that he had the camera in his bladder and they found a small tumour. He hasn't had a firm diagnosis yet, although Google and the literature the consultant gave him seems to suggest it's likely to be cancer. He had a CT scan last week and he's got an appointment with the consultant this afternoon to discuss the results of that.

We keep talking about crossing bridges one at a time. This CT scan bridge has been the hardest to cross because the not knowing and waiting has been torture. We know that the results of this test could either be very reassuring or really devastating.

The next 'bridge' is the biopsy operation to remove the tumour, which we found out yesterday will be the beginning of March. This will tell us the stage and grade of cancer, assuming that's what it is. And then the next bridge will be treatment...

I felt the same as you, thinking how on earth are we going to get through the wait. But we have so far, taking each day as it comes and gently plodding along. My DP has been really depressed by it all so my energy has been taken up with trying to shield the kids from this!

I'm finding it hard that I can't tell anyone because he doesn't want anyone to know. From a practical point of view it's really tricky (eg we're coming up with convoluted plans about how I can drop him off and pick him up for the biopsy op without anyone knowing, which is virtually impossible because someone will have to watch the kids ). He is also refusing to have me come with him to any of his appointments, which is hard to deal with because I know he'd prob benefit from a handhold. But he's being stubborn...

Bless you, @Silkiechickscat, that sounds so hard. How old are your kids? I really hope you have the results soon so your wait is over (what a long wait you've got! We've really struggled with the two we've had between the camera and the CT scan results today!), and you know what you're dealing with... I also really hope the results are good.

Hugs to both of you, @Whydoesthisneedtobe and @Silkiechickscat

Gosh, sorry about the essay.

I'll report back later when I know the CT scan results

When DP got his diagnosis he was told to bring support (despite the hospital being locked down for covid), hopefully someone will tell DH the same. Good luck today, I will be thinking of you both

I would maybe wait with the job interview and see how you feel next week. I don't think I could manage one atm but distraction can help (though nice rather than stressful distraction) and if it gets you another job it maybe worth it. There will be other jobs if you aren't up to it though maybe worth explaining as well as the company may understand and delay if you don't mind sharing. I wouldn't worry too much about preparing, I often got offered the jobs I'ld prepared least for.

I was tested for bladder cancer after lots of blood in urine a couple of years back, thankfully all clear. I can't remember what blood test was for, main test seemed to be CT scan though I was private on work insurance and they said on NHS would have been a cystoscopy initially (though think it then may go to CT). At least when they know the stage they can have a treatment plan so you will know more.

Are your kids little? Mine are 14 and 15 so at least they are older though 14 year old DS is SN and a very little 14. If they are primary in time I would let school know. I may still do that with secondary if the outcome is bad but atm both are home until at least 8 March. If you are struggling then you can ask school for a place, even if its just for one day one off.

My Gran apparently had bladder cancer in her 80s according to my mum. She is currently 101 years old. Hope that’s reassuring for you.

ShiningGonnaShine Hope the CT results are as good as they can be for you both.

My DH was also not keen on people knowing and didn't even tell me for a week and a half and I only know as I discovered it when borrowing his phone. He explained pain by saying he'ld injured his back and made some fake excuse for going out. Now I know he seems happier and we can chat about it and he feels less alone, he's starting to tell a few people but I think for him telling people was acknowledging there is a problem and he prefered to be in la-la land.

You will need to tell someone if you need childcare. I would be tempted to tell a friend of yours but say to keep it to themselves then you have some support.

Thanks @bloodywhitecat. His consultant appointment letter did mention that he could bring someone with him but he's adamant he doesn't me to go. I think this is mainly because he knows that we would need to find someone to have the kids, and then we'd either have to tell them or tell a convoluted lie. I'm hoping today's news will help to focus him/us on how we can manage the whole thing from a practical point of view. How are things with your DH? Hope you're OK?

@stairway - that's very reassuring, thank you. Go your Gran!

@Silkiechickscat - you're absolutely right... I think telling people makes it all the more real. He's also really worried about upsetting people, especially his mum. And I think he wants to minimise the upset and worry until he has all of the information about what it is exactly he is facing, and what this means in terms of treatment and prognosis. I totally understand this - I'd feel the same. It's just the practical problems of dealing with appointments/operations etc without telling anyone, but also needing them to watch the kids for a bit. He's even talking about getting a taxi to/from the hospital when he has his operation, which I think is ridiculous... again, today's results might help him to come to terms with the fact that he has to start telling people sooner rather than later.

@Whydoesthisneedtobe - our situations are scarily similar... my DP had various tests that didn't show anything up, so he almost cancelled the cystoscopy (he was dreading it, and didn't think there was any point). We're both so pleased he didn't now. His TURBT is booked for the beginning of March - I think they remove the tumour, which then goes for biopsy testing to determine the stage/grade of cancer, and he has a chemotherapy drug put into his bladder at this point as an initial treatment. Depending on the biopsy results, they then decide on the best course of treatment. He needs to self-isolate for two weeks from next Tuesday. I know exactly what you mean about worrying how to act and be normal around people that don't know - I felt exactly the same when we first heard the news. His mum rang me yesterday about something and I nearly ignored her call because I panicked she'd ask me if he was OK! My DP is the same about not telling anyone until we have more concrete news... I totally understand, but it does seem to make it feel harder.

It might seem impossible right now, but, if you're like me (I mean, you ARE me 2 weeks ago, aren't you?!), you might find that, in a few days, you might find that you feel more able to cope and face things - I did. It's such a shock at first, and it seems like it would be impossible to get on with normal life, but you somehow do, and you somehow don't feel quite so scared and unable to cope. So, you might find that you feel like you can give the interview a go, and it might prove a healthy distraction. Keep in touch and let me know how you're getting on.

The consultant appointment has been brought forward today (I'm guessing because of the snow) - I was supposed to be at work but I'm not (because snow), which is lucky. I'll update later once we've heard the results.

Thanks everyone.

Hi @ShiningGonnaShine My husband was diagnosed with BC in October 2016 after minimal symptoms - major one was a couple of accidents which he was pretty humiliated by. He was 45 then. His was diagnosed as non-invasive into the muscle, though G4.

So, he had 2 TURBT operations - essentially bladder resections to remove the tumours and then tidy things up. Since then he has had regular treatments with BCG - it goes directly into the bladder, you have to wait 2 hours then pee it out. The side-effects are frequent peeing and burning and he sometimes had flu like symptoms. He also lost control of his bladder for a couple of days. Each treatment course is followed by a camera into the bladder (cystoscopy) to check all is clear. It always has been.

He had his final set of BCG treatments last autumn and then a cystoscopy was clear so he is officially cured. They will repeat cystoscopies every 6 months for now.

I would recommend trying to look only as far as the next appointment, operation, treatment and not too far ahead. Everyone is different and the treatment plans vary depending on the diagnosis. We have always tried to be as positive as we can, including with our kids who are now 18 and 22.

The worst part is the embarrassment. He is now a bit like a toddler who is being toilet trained. When he needs to go, he has to go now. Where toilets are governs any trip out (not an issue at the moment!) and he has a designated toilet at work. He sometimes cuts down his fluid intake which is really bad so we don't ever make a big deal of the toilet diversions. He also has a radar key (supplied by Macmillan) and a card that allows him to try to jump queues and get access to, for example, staff toilets. He hates it. Other than that, which we have got used to, life has been pretty normal.

Please ask any specific questions and please hang in there. It is so tough but talk to people and give yourself a break.

His consultant appointment letter did mention that he could bring someone with him but he's adamant he doesn't me to go. I think this is mainly because he knows that we would need to find someone to have the kids, and then we'd either have to tell them or tell a convoluted lie. I'm hoping today's news will help to focus him/us on how we can manage the whole thing from a practical point of view.

Your children will need to know that 'Daddy needs an operation' at some point. So now is as good a time as any. You don't have to go into any detail. And please, please, try to convince him to let you attend with him. I went to all my husband's appointments with him, bar one. Which he assured me he didn't need me for. Of course, that was the one he came home from in deep distress because the doctor he saw that day was extremely unempathetic and tactless. Consequently my DH couldn't recall any of the important information that I'd have been able to take in had I need there too.

You really do need two people at these appointments. There's so much to take in, and often the patient simply can't absorb it all.

Thank you Shining and Fantasmic. Sharing your knowledge is so helpful. X

We were told that they recommend bringing support because one person remembers about 30% of what is told to them. DP says his brain froze after "You have cancer and there's no good news I am afraid", after that he took nothing in. Do you have a specialist nurse involved yet? She was the one who was able to persuade DP to take me. Him not wanting anyone to be told isn't going to change what they tell him but it will help if you are there too. Sit down together and write down the questions you want to ask because your minds will go blank.

@Whydoesthisneedtobe - that's excellent news about the interview. Must be a weight off. Sending love back.

@Fantasmic143 - thanks so much for all of that info. I'm so pleased your DH is officially cured. You are so right about only focusing on the immediate future right now. That's what we've been trying to do with the whole 'bridges' analogy that we're pretty wedded to. Positivity is in short supply for him, at the moment, but hopefully once we know more we can try to be less doom and gloom about it all (obviously depending on what we are told!).

@saraclara - you are right. He wants to somehow hide the operation from the kids (perhaps by us going to stay with my mum for a little 'holiday' ) but I'm getting more and more convinced that this 'top secret' thing isn't worth it, or even going to work. Again, today's news might help us to figure out what to do here.

Re -attending appointments with him, @saraclara and @bloodywhitecat - I totally agree. He's already being quite vague about what doctors have said so far - up until two weeks ago that didn't seem very important, but it's now becoming clear that two heads are going to be better than one in these situations. That ship has sailed already today, though - he's already left for the consultant appointment. He was incredibly anxious when he left. I'm feeling it now, too (not helped by the fact that I'm due on, and I'm also doing a fast day today - this is clearly unwise but I can be a stubborn little shit sometimes so I'm ploughing on with my Thursday fast regardless ).