Partner has Bladder cancer

Hi Chilli, i'm not in same situation but i know many here are or have been. They will be along soon with more to offer than i have. I just feel for you. For you both. Such a difficult situation. I hope things pick up for you soon.

Regarding pain - have you tried your GP ? There must be something stronger/more helpful than paracetamol.

I had a tumour removed from my bladder 10 days ago and was allowed morphine syringed into my mouth. It worked so well. I think the biggest plus was it relaxed all the tightness my body was causing in reaction to op. And i was able to sleep.

You have done right posting on here. There are some real warriors ( i do hope they don't mind being referred to that way) on here that have been there and back. And they shine so brightly for having faced their difficulties and their continuing difficulties. In case you haven't realised yet i am in awe of them all. 

So for now. I'll cross my fingers for you and wish all the best. Keep going....Del

Hi Chilli lover,Welcome to the group.I’m so sorry to hear how much your partner has been through with his cystectomy.Hopefully the men here will be able to share their experiences of cystectomy.I know I felt rough for the first few weeks with all kinds of aches and pains.I had rectal pain and leaking from the anus.I didn’t get on with morphine as it made me sick even with anti sickness drugs.I think the problem with the major painkillers is constipation.There are different things to try to alleviate the constipation.Perhaps people here can tell you what worked for them.It’s usual to lose weight after this op.I was very thin when I came home and gaunt in the face.It’s best to eat little but often.I couldn’t manage bread as I found it too filling.Instead I had sandwich thins/wraps with meat or cheese.I felt better by week 12 but it was another 5 months before I was well enough to care for my mother full time.There is plenty of advice and support here for you both.Best wishes going forward.Jane x

I forgot to say it’s best to keep measuring the stoma as in the early days it will change shape and shrink.Once it’s settled in size you can order pre cut stoma pouches or cut them out yourself.Jane x

Hii Del,

Thanks  for your reply to me it does make you feel  your not alone being part of a group that knows how to best support someone going through this. Seeing the journey others have been on gives you some  idea of what to expect,  what is normal after op , well nothing is normal now but you know  what  I mean. 

Thankyou again for your reply , I am going to  keep  posting on the  site as I feel our journey will also help others. X

Hi, yes everyone has said that it does take at least  12 weeks post op to even feel anything like you were before. I keep  reminding him that he has had a huge op and it will  take time. He is so used to doing things himself  that he finds it very frustrating having to rely on me. 

I just  want to do what I can to help, to get him through  this. It's  hard to know what is  normal  after op and what to expect and then I worry if the pain is post op or something new.

I'm just  taking each day at a time as that seems to be the best  coping  strategy for now and not look too far ahead.

I'll keep  posting on the site so others can see our journey and hopefully get answers to their  questions. 

Thankyou for your reply, it's good to know that you are not alone. X

Hello Chilli lover, just want to add my support to you and your partner. I am a bladder cancer patient and not had the same experience as you are describing. However I did have an operation for bowel cancer and had subsequent chemotherapy in 2013 and do know the downsides of the consequences. I do remember the pain and discomfort of both the operation and the many chemo sessions. At the time I had no appetite and felt really down. I lost weight and became very thin to the point of almost collapsing out of lack of nutrition. It really was my wife that nagged me into being more positive than I felt at the time which as you know is extremely difficult. Sure it was a journey but you soon come to realise there are many people around you who are in exactly the same boat. This might sound strange but when I had my chemo sessions with other patients who were all of different ages and having different cancer treatments I felt very comforted because it brought it home that you were part of a group of people that had been through what you have had so you felt a degree of coming together.

The point being as low as you feel at the time there is a way out, it just takes time. Do keep us posted in your partner's progress and power to you for sharing it with us, you are a very important part of your partner's recovery.

Hey Chilli,

that's a great idea to keep on posting your, and husbands, journey. It will help others definitely which is good and i think it will help you too. To be able to express fears and to share the problems these difficulties bring does help. It somehow lightens the load to think of and to hear of other peoples difficulties and to share your own.

Sending strength and hope waves.....Del.

Hello lovely just wanted to lend my support. My partner had kidney and bladder cancer, he’s only 35 and we have 5 kids including a 15 week old baby. I can’t give any advice as our situation is totally different, his kidney has been clear for almost 3 months now and after 6 weeks of chemo there’s just a 7mm patch left in his bladder which is now being monitored as it’s not doing anything. But just want you to know you’re not alone. I’ve struggled caring for him and the kids while he’s been ill and he’s really fed up of being out of work and sat around. Am sending you both lots of love 

Lou x

I haven’t been on the forum for quite a while, but I remember how important these chats were to me after my husband had his Cystectomy just 3years ago. I told my husband’s story some time ago- and it was pretty complicated. He recovered well for a couple of months and then started to suffer constant urine infectios which lead to repeated hospitalisations. My elderly mother also died during this time. It never rains………

After @ 6 months it was found he had constrictions in his Conduit and had 2 stents inserted through his stoma into his kidneys. There was improvement, but he did still suffer from UTIs. 
Last November he was offered a small operation to allow one of his stents to be removed. They found he had a blockage next to his stoma and rectified it- but op produced a large haematoma. He spent 3weeks in hospital and it took 6weeks to drain!

The reason I’m writing this is to say that I can see that each person who has Bladder Cancer starts a journey that is theirs and theirs alone. BUT - there is such a lot of help out there. I have found that the NHS has such expertise. Most of the problems are solvable and Macmillan helps in so many ways. This forum for one - and advice from their nurses.

My husband is well again! He is 81, has gone through the mill, but during the good weather reroofed his sheds, sorted his garden- and we have just returned from Tenerife! Life can be a struggle in many ways and cancer is a big one, but it is surmountable. I have cried on many occasions and there are so many ups and downs, but…… take one day at a time. It’s all we can do. Thinking of all on this forum. 
One day at a time…….

x

Hi Canevara44,It is good to hear your husband is well again.It sounds like he has been through so much since his cystectomy.It is such a big operation to undergo especially as an older person.I underestimated how long it would take to fully recover.Thank you for posting.Best wishes to you both.Jane x