Cancelled op, hard at home....

Hello Fionay68 it is so rotten to sit waiting for hours, then get your op  cancelled. Many on here have experienced this and we all totally sympathise. Do you have a CNS you can talk to about this? I know others don’t have this support but my nurse has been a rock. You definitely need a new date ASAP, it’s completely unfair to be waiting around. If not a CNS the consultant’s secretary can be helpful. The waiting is definitely the worse aspect of bladder cancer treatment I reckon. I don’t think you will need anyone to nurse you after a TURBT, in fact I find being well prepared with easy food, nice fresh bedding and being left to flop on a sofa alone is the best way to recover. Sorry to hear things are feeling so raw. Sending best wishes. x

Hi Fiona

We know that a diagnosis of cancer hits our partners and families just as hard but in a slightly different way. We patients tend to just deal with the actuality where as our families experience frustration at feeling powerless to do anything.

Macmillan offer a counselling support service for patients and families and there may be a bladder cancer support group near you - if so, I'm sure one of the support group members would be willing to chat to you and your partner.

CB

Thank you.  I'm not keen on being nursed and I'm a lousy patient and would much rather be alone.!! He just seems to be using my situation as a reason to get time off work whereas I'm wondering how quickly I'll be able to get back...! I understand it's hard for him as well but he's acting like the injured party and that everything is either an inconvenience or designed to stress him to the extent I'm beginning to wonder which of us has a cancer diagnosis...  I'm keeping it as quiet as possible until after surgery and have only told immediate family, my colleague (there are only two of us working there!) and a very few close friends.  He has told everyoneat his work, spoken to HR several times, arranged leave, told all his family, several friends and is now taking time off even though I haven't had surgery and got angry with me when I said I didn't like this.  I've tried to keep everything lighg and just don't need this atmosphere at home now!!  I now feel guilty but not sure why!  

Xx

Hi . I know how deflating a last minute cancellation can be and I am sorry to hear your partner is finding it difficult to deal with things. It is not an uncommon situation you find yourself in. We see it across all the boards here where loved ones do not know what to do in these situations. The sneaky thing about cancer is that in many cases it does not display any visible signs and people can look and act normal. This confuses others who do not understand. Treatment can turn out to be a long drawn out process and as time goes by, loved ones can start to understand. In my own case, I found my wife was coping with things far worse than I was. We were referred for counselling at a local cancer care centre. It didn't actually work the way it was supposed to for us. The counsellor was more depressed than we were and we had to laugh all the way home. It did break the ice though. As mentioned above, chase up for a new appointment. It does help relieve the stress if you have a firm date to focus on. I hope all goes well. Best wishes.  

Hi Fiona, so sorry for that, it must be traumatic. I had my first cystoscopy cancelled on arrival so can sympathise, obviously no comparison though.

Best wishes for a quick new date.

Hi Fionay68, I have the perspective on here that I'm the patient's wife. I'm on here because the hospital treating my husband hasn't been very good at info or support for us. He just doesn't do forums, social emails himself etc being a bit older. If what happened to you happened to my husband it, for me, would be the hospital I would be contacting enraged, not taking it out on him. I would be raging to him about the hospital intermittently but not at him and be making that difference very clear. Personally I think [of course!] that my line is reasonable. He's just had a bad hospital experience with a leg injury unconnected to the bladder cancer and this is exactly what happened. I spent 40 mins on the phone to PALS and they are taking it forward as a formal complaint.

So if you get my drift I personally don't feel you have anything to feel guilty about. And by the way my husband chose to go ahead with our Ruby Wedding big party without saying anything a year ago at the beginning of diagnosis/TURBTs etc so you are not alone in choice to keep quiet. Do you have other people around you, grown up kids, trusted women friends, etc, who you can share this challenge with your partner with?

I realise you may need his income but if you're that concerned about his dishonesty, if he did lie to HR, it would be your choice whether to inform them. After all what is he going to do when you DO have surgery, has he thought that one through? Maybe if he has to work then, it will pan out as you wish ie you get to recover in peace. Maybe HR can arrange some counselling for him if this behaviour is his way of showing he is not coping???

I suppose it's not going to help either of you for a stranger to be too judgemental of a situation with people they've never met, but as you have reached out to us about this, the above is what I feel as a partner.

Thinking of you at this tricky time and hoping it is not too long until your original date comes round with a bed available.

Denby

Thank you.  I just want everything to feel as normal as possible and this for me means I'm carrying on with work as much as I can and feel he should do likewise!  I'm not in the least bit superstitious but can't help wonder what will happen when I do need to go in and if there are any unlikely complications - will he say I've had to go on for another op? What if we bump into his colleagues while out and about? Can't see why he didn't just phone in (as I did) to say the op has been cancelled and to reschedule his leave till another date is arranged.  I took exception to how he was talking to me this morning so now he hasn't spoken to me at all and has gone off to bed to sulk.  Not sure I have the energy to be honest for both of us and I'm damned if I'm going to apologise for nothing .!  

I'm lucky in that my colleague is also a wonderful friend ( we run a small community project) who went through breast cancer a few years ago and who is a brilliant support so I'll talk it through with her.

Thanks again.

Hi . It is rare for complications with these ops. They are usually fairly routine so try not to think about that. I am more of help with practical things and not really any good with emotional or relationship things, but remember this is about you. Your friend who has gone through her own cancer experience will be a great support to you as she will know what you are thinking. As always, this is a great platform of support if you need to talk to others who understand. Best wishes. 

Thanks so much everyone.  Just needed to vent for a bit and you're all incredibly kind! Xx

Aaaaw Fionay, I'm so sorry to hear that your appointment was cancelled.  I've seen it happen a few times at my hospital, luckily it's not been me.  As for family members, it's a strange thing.  A few of my ex family members said that they didn't know why cancer patients had so much fuss made of them, another said it was only a few tumours.  It was almost like they were jealous!  Mr B & I have had our moments, & I too have wondered which one of us has cancer before now.  However, you're both probably struggling to deal with this in your own way.  Experience has told me that this brings out the strangest of behaviours in people.  They really are so worried, & they really do care, it's just that they're not always able to deal with it.  Do ring Macmillan, I've done it a few times in the past.  Remember we're all right behind you here xxx