Dad's waiting for full diagnosis

Hi Jen, a tip for night bottle users. Store it in a stable/wide bucket beside the bed, so that it is not easily knocked over. Even the ones with caps do not actually contain the urine in my experience.

Hope it works better,

Denby

Having another sleepless night, and thought I'd give an update on where we are after a few months for anyone else who might be where we were two months ago.

Dad ended up getting a TURBT date on 19th September -that was about 4 weeks after his initial 'suspected bladder cancer'. Immediately after the procedure the urologist came to speak to us and told us the tumor was advanced and most likely muscle invasive, and that they couldn't get it all out because it was so extensive. I had hoped that after the TURBT dad's pain would be less, but after the first week, if anything it increased. 

We then had 3 week wait to speak to the urology oncologist, to hear about treatment plans. They had to have a multi disciplinary team meeting to discuss all of the results before our appointment was booked. In between we ended up in A&E because of the pain where dad was given morphine by a nurse, but it was a busy night in A&E and we decided to leave (with some codeine) before we saw a doctor after waiting for 7 hours (as we knew his results were being discussed that same day and we were naively hopeful for quick answers). It was actually another week before we heard the results, but in the meantime the GP prescribed him more codeine.

The wait after the TURBT and before speaking to the urology oncologist was the worst - I imagined the worst and had convinced myself that they would not be offering dad any treatment at all, but just manage his pain. Luckily, I was wrong.

Before we got given the results i was desperate to know the grading and stage, but now we have them alongside the news that they think they can cure dad, it seems less important. Things that now make sense, are that the pain was actually in his kidneys, where the tumor has been preventing his kidneys from draining. That was all mixed in with his very nasty bladder infection which made his bladder very sensitive and sore. Things improved after the bladder infection cleared up, and we got in to a better pattern of managing his pain with paracetamol and ibuprofen (and codeine).

After such a long wait to speak to an oncologist / urology consultant, in the last two weeks dad's seen three! The first confirmed the diagnosis and said the treatment plan would be to send dad to another hospital to remove his bladder entirely. The second said that after they had reviewed all of the information, the other hospital wanted him to have chemo first to reduce the size of the tumor, then the operation, and the third was to speak about the chemo. They have also told us the tumor is 5x7cm, which is large, but not the original 17cm (although I wonder if I misunderstood what the nurse was saying all those weeks ago).

To relieve the pain and get dad's kidneys working before chemo, he has had a nephrostomy (procedure happened just under 2 weeks after we got his results), and if all goes to plan he will start his first (of 4) cycle of chemo on Wednesday this week (3 weeks to the day after getting his results).

After so much waiting around, it suddenly now feels like 'all systems go'. 

There is still a long journey ahead, but it feels much more manageable (at least for me) now that we have some answers and there is a treatment plan in place. I think dad is still coming to terms with his diagnosis and the need to have his bladder removed.

Sending courage, strength and endurance to anyone at those early stages. I still can't believe how long it's taken to get to the point of treatment beginning, but you'll get there too. 

Xxx

Dear Apples and Pears, so glad you have reached a point where you can all see your way forward. I have been through the same thing as your Dad is facing so I can tell you that the chemo will be working to kill off the cancer cells and while it can be tough at times is bearable. We all react differently of course but the important thing is to get into a routine and that seems to make it easier.

One thing to think about is that the tablets they give at the same time as the infusion of chemo (to prevent sickness) can cause constipation. I found that the worst part of the whole thing in some ways - my hair loss wasn't too bad and the weakness was cumulative, so OK to begin with. In the end I didn't take the anti emetics and ate as much fruit, drank lots of water and ate bowls of broccoli soup (that my husband and daughter made in large quantities) as I could and that helped. I only felt sick once. Walking daily also helped when I was up to it. Otherwise I read and watched TV. 

I've written elsewhere about the op. It's tough but doable too. I'm about the same age as your Dad - 69 on diagnosis , 70 for the op and I coped well. He must keep as fit as he can even with his MS and I am sure they'll tell him about that closer to the op.

I was worried that because of my age they might not operate but my oncologist tells me about an 84 year old who has had it and is back to mowing her lawn. 

Don't worry about grading, it might change after the op and by that time they'll hopefully have got it all out anyway.

All the best.

Latestart

Thank you so much for your reply Latestart, and for your advice - my dad was not at all keen on the codeine for the same reason that he couldn't stand being constipated, so that's really helpful. 

I'll seek out your posts on the operation.

Xx

Hi Apples and Pears,It is good to hear that your dad is further ahead with a plan for treatment.The early days of waiting are so stressful and when you are in pain it feels like forever.There is plenty of advice here when your dad gets to the next stage of treatment.Wishing him well and keep us updated.Love to you both Jane xx