Immunotherapy

Hi Rachybadger . Sorry to hear how you are feeling. It is understandable. We know your husband has been having treatment for months now and we know how draining treatment can be. It can really wipe you out and it does affect loved ones. The fatigue can get you down and you may not appreciate the help you are getting. Does your husband have a CNS (Clinical/Cancer nurse specialist) ? These are usually the best people to talk to for help and advice. My CNS was always there when I needed to talk. Best wishes.

Thanks yes he does have a CNS so ill see what happens after he speaks to his consultant today

Hi Rachybadger, I have recently had bladder cancer return from original site to my lymph node and it is very painful, I have been taking paracetamol and the odd neuofen to take the pain away as its almost painful to walk sometimes. I am waiting to have chemo and immunotherapy start but it is taking a while to start and I am dreading it. I managed three years of bcg treatment which finished last year and was OK shame it's returned. 

Can I ask what treatment your husband has? I am sorry to hear he is feeling low and you yourself are, It must be difficult for the other half as I look at my husband I feel so guilty and sorry for him having all this to deal with.

I hope the CNS may help or the consultant helps. 

Please take care of yourself. I was the patient and thought I was being a good one  but the stress of the op and then watching me in the ICU after my cystectomy stressed my husban so much he had a heart attack. And then our poor daughter had 2 patients to cope with. In the end it all worked out fine but having to watch a patient feeling ill is tough. 

I expect your husband feels bad at putting you through this as well as fed up at this development. Please try not to take his grumpiness personally. It isn't pleasant but I often feel this isn't meant but just seems to be because of a feeling of hopelessness. I try to ignore it (I've been in your place too and I used to want to shake the patient out of his misery, however understandable). lt can be very frustrating, I know.

I think talking to someone might help you. There is the Macmillan helpline and they also have some drop-in centres or if you have a Maggie's centre near you you might be able to do it there. 

I hope that your husband gets back on an even keel soon and his team gets this problem sorted. And if he won't take tablets would a hot or cold pack help a bit?

All the best 

Latestart

Hi sorry to hear this.                                    I had muscle invasive bladder  cancer for the last two years                               T2 grade 3.           I've had chemo which was this Cisplatin and gemcitebine  also a month of radiotherapy followed by 12 months or 13 sessions of dervalumab  immunotherapy.                    I have now finished the treatment.       and everything has gone well with very little side effects I am 67 years of age just gone April 21.       I'm not young I'm not old     but fitness is very important plus mental attitude.          the chemotherapy was the worst with one blood transfusion and a clot on my right calf but I am now off blood thinners because I finished my treatment plus I'm clear but I have had no counseling this combination of treatment has been very successful for muscle invasive bladder cancer I will now have flexible cystoscopies every three months for two years.                                                  so it's nice to know they are  checking on me along the way.                           hope this information has helped you and give you some hope for your upcoming treatment god bless you Michael. Brickhouse 

Wow that sounds a lot of treatment and I am glad you have got through it and everything has gone well by the sounds of it, tough journey but great it has been successful. Yes I think fitness and mental attitude is very important. I worked the last three years during having the bcg treatment and that helped me and at present I feel a bit lost with the time they have taken to diagnose it is actually from the bladder and not gynae. I have been signed off sick and that is not me but had lots of appts to attend. Then they said chemo will start in 2 weeks so more waiting. They have said the cancer has gone to lymph nodes(grade 4)so is not curable but treatable so that's a massive concern but I am going to be in touch with someone from forum who has been have the chemo/immunotherapy that I am due to have.

Apart from discomfort in groin area I feel fine at present but I am sure once I start treatment I will feel wrecked which is a shame as I have always been healthy. 

I am glad they are keeping a check on you and do you think you would have liked support with counselling? It's such a lot to go through. Were you working before this happened? Has life gone back to something like it was before cancer came along?

Thanks for reaching out

Tracey