Bladder cancer

I’m so sorry to hear this FloGlow.I hope the team can come up with some alternative treatment if your husband is not fit enough for cystectomy.My best wishes to you both.Jane x

Hello FloGlow, 4 weeks of radiotherapy will probably have left your husband feeling somewhat drained and tired. It is a quite common side effect of the treatment but he should gradually feel better as the weeks pass. Nevertheless, it can be a morale sapping period, not helped by the fact that the radiotherapy was unsuccessful. 

My tumour was large (7cm) but I don't know how solid it was. CT scans before and after 2 weeks medium dose radiotherapy showed that it was not muscle invasive. In my case, CT scans showed the radiotherapy had destroyed 95% of the tumour, leaving thick scar tissue which reduced bladder flexibility. This caused problems with bleeding around the remaining tumour, requiring many blood transfusions. Two TURBTs followed. These removed the remaining parts of the tumour and have largely eased the problem with bleeding although I do still have shorter duration problems with that quite often. I'm 75 - nearly 76 and have a heart problem which was discovered during a pre-op, hence the diversion to radiotherapy. The TURBTs were performed with increased risk, the first one as an emergency procedure. I'm mentioning this because at that stage the cancer had nearly got me. A palliative treatment regime followed. Chemo, BCG and bladder removal were all considered too risky but removal is still on the cards as a desperate measure. Further TURBTs are a more likely outcome as the tumour(s) are slowly growing back. However, this grim period was in late 2017 (radiotherapy) and 2018 (emergency TURBT, 2nd TURBT and sepsis). I'm still here, living independently (widowed) with my daughter visiting once a week to help with housework and my son calls to do the lawns. I still drive myself to A&E every three weeks or so when my Foley urethral catheter blocks. I carry out a regular flushing procedure but eventually the damned thing has to be replaced! Gone are the days when they lasted for the full 12 weeks.

The best advice I can offer for your husband is don't give up hope. Live day to day, meticulously searching for the positives that occur - even if it's simply that you had a good hour or two asleep and dreaming. My good wishes go out to you both and here's hoping that your medical team find a course of action which keeps you going.  Ray xx       

Thank you Ray for your kind and informative reply.  We are both trying to keep positive and I am intent on building him up  (he was very fit before the cancer and played golf three times a week) in the hope that, if necessary, he will be be fit enough to have the bladder removed.  

You have certainly been through stressful times and I will certainly not give up hope after your reply.

With best wishes x

Hi FloGlow,My tumour was solid and I was very unwell prior to the surgery but was able to have it so I hope this will be the case for your husband.Jane x

Good morning winkers60   Thank you for your kind reply.  May I ask you how old you were when you had the operation?

Hi FloGlow,I was 58 almost 59 and the tumour was aggressive T3b G3 and causing an obstruction.I was full time carer for my late mum at that time and struggled on until the symptoms got too much.I hope your husband can build back his fitness.I think it’s bad that you have to wait so long for the meeting.Best wishes to you both.Jane x

Thank you again for your kind reply.   My husband is 82 but was very fit for his age. He was fine until they fitted him with a new nephrostromy  and put him on two different tablets and he started going down from then.  

He did have a dedicated Macmillan nurse but e can never get in touch with her and speak to different nurses.  

Thank you again - you are very kind x

Hi FloGlow,

I was 69 when I had the cystectomy and am now 73 next month. After chemo they found a heart issue - atrial fibrillation - and just before the operation I had a clot in my lung. They cancelled the operation but after blood thinners they did the op. I can't say the anaesthetists were very happy but I came through fine. My husband is 82 and had his knee replaced last year (admittedly using sedation rather than a full anaesthetic.)

Can you get your husband to walk every day? That's what we do and it really helps when you walk in to see the medics with a bit of pink in your cheeks.

Plus, mentally it helps you come over as more positive and up for a challenge. I also wonder if your husband has a CNS in the hospital where he is being treated. They are more expert than McMillan nurses on the particular type of cancer involved. Have a look on your correspondence - when they write to me there's a list of the whole team  involved with my care. My CNS has sorted me out several times when I've needed help.

Also, can you find out if there are alternative tablets or a lower dose he could take?  Either ask the CNS or the GP.

I think you might be glad of the 3 weeks if you can use some of the above to build your husband up.

All the best,

Latestart

ps cystectomy is a big operation but with help it can get you a whole new lease on life. That's been my experience anyway

Thank you for your reply which has helped me tremendously.  There can be light at the end of the tunnel.

Also we were not aware that we could speak to the CNS, we thought the Macmillan Nurse was the go between so again that is really helpful advice.  My husband does feel sometimes abandoned as the service was brilliant to begin with but now it is difficult to speak to the same nurse when needed.

Thank you again - I do feel more optimistic for the future.

Kind regards

Glad to hear it helped - its easier to think of things re others, I find.

All the best,

Latestart