My results and treatment plan after my Cystoscopy OP.

[Ern007]

I got a telephone call early morning last week after my Cystoscopy and biopsies.

Although earlier this year they said I could not have BCG again - Oncology nurse told me I was having a shorter course of BCG ever week for three weeks, Should really have been spaced, but mo matter.

After a month or so I will have to have another Cystoscopy is four biopsies,

Then I expect I will be sent for at Preston hospital for results and their treatment plan.

My plan is simple - If my cancer has not spread after near 3 years, the BCG and at first Chemo have done a job.

I will ask for more BCG and catheter Chemo and no operation even if they wish..

If any spreading then it;s a new ball game, a lot will depend, If only an op is my only chance, then I will consider that.

A Cystoscopy op is dangerous taking 6 hours and requiring Intubation with bladder removal.- -Prostate and Lymph Nodes removed .

Also parts of intestine took to connect to kidneys,

So even if my cancer is still "high grade" but not spread - then I will insist on none surgical treatment such as BCG and Chemo/

If I have nothing to lose - I would then seriously consider the op -

My gut feeling is, it won;t have spread but will still be high grade

I have medical support for refusing a Cystoscopy unless that'sthe only viable route,

Cystoscopy is not just dangerous, it also life changing in a big way.[

Apologies for lengthy post.

[sassy59]

Thank you for explaining everything really well Ern. I do wish you the very best outcome and hope you’re well supported.

I’m still waiting for a radiotherapy appointment at QA Portsmouth and have chased it up today. Had to leave a message so hope they get back to me soon.

Take care xxxx

[Ern007 in reply to sassy59]

Thank You Carol.I had to chase mine up several times, normally it worked, I remember last year, months had gone by, I phoned them up and - i could not believe I had to cancel for COVID, they did move fast but I got a call, cancelled, surgeon had got COVID, but was seem within three weeks. I asked for "radiotherapy" but they say it would not penetrate my bladder.

But if it moves from inner lining then radiotherapy should get it.

I hope you get your appointment at QA Portsmouth very soon. nothing worse that waiting, Take care xx

]

[sassy59 in reply to Ern007]

Thank you Ern. You take care too. Thinking of you. Xxx🩷

[CDPO16]

You seem to be remarkably good at taking everything in your stride Ern and looking at everything in a realistic way. I wish you the best however things work out. Carole xx

[Ern007 in reply to CDPO16]

Thank you Carole. I feel I have to be aware - they stopped my treatment last year after plans had been made, they went on out of the blue over a 6 hour op. a life changing op. They said ok for now and put me back on BCG and when I went to hospital with Anne (wife) they said no treatment you have a 6mm on you lung, one of those times when they say (can you both come in here) So lung specialist later said nothing to worry about - So finally I got my treatment,

The bladder removal and the other bits takes 6 hours, going under with my health COPD/HEART/KIDNEY Stage three plus my age is dangerous - So I will only talk about that when nothing else will help and I have nothing to lose.. At times my stride can be wonky . "Realistic way" I think is the only way Carole - I have booked a holiday this year for end of July, 1st for ages, take care x

[CDPO16 in reply to Ern007]

I'm glad that you have a holiday to look forward to Ern. I hope that you and Anne will be able to relax and enjoy yourselves. Best wishes, Carole xxx

[Ern007 in reply to CDPO16]

Thank's Carole - It's on;y Southport but it a clean resort and hotel has evening entertainment, that's a must - Lots of new garden centers to visit,. x

[CDPO16 in reply to Ern007]

It's a lovely place, a long time since I was there. I think it will be good holiday for you both with time to switch off for a while xx

[Ern007 in reply to CDPO16]

The key there is "switching off" - There is a hotel half way between Blackpool and Fleetwood I like, but Southport just a nice distance to drive,I like things handy these days, x

[Alberta56]

Best wishes- I hope that you can avoid a cystoscopy and that you will do very well with the less drastic treatment.xxx

[Ern007 in reply to Alberta56]

Thank you - I will tell them try all the other options. xx

[djbctla]

Hi Ern,

Whatever treatment decision is made, I wish you the very best outcome.

I admire the practical positive outlook u have.

God Bless and mind yourself.

BERNARDINE xxx 🌹🌹

[Ern007 in reply to djbctla]

Thank you Bernardine - I try and be practical, that in part is how I try and get by with hope they have a good plan, the plan I want, ? xx

[djbctla in reply to Ern007]

🌹🌹🥰🤗🤗

[Patk1]

All the best and enjoy yr hols x

[MoyB]

I think that being practical sounds like a great strategy for you, Ern. Deal with the bits that are within your control but keep Plan A and a Plan B in the back of your mind.Enjoy your break in Southport. I've never been there so look forward to hearing about your trip.

When I was at my lowest ebb, we used to book a night at a good seafront hotel 4 miles from home. Being in different surroundings for 24 hours with lovely food cooked for me (and no clearing up!) gave me a real boost. You don't always have to travel far to get the benefit of a break from home and routine.

Best wishes for your future treatments to be successful, and for you to be included in the decision making all the way along. Good luck!

Xx Moy

[Ern007 in reply to MoyB]

Thank you - best to look at the options - I was shovked when they offered me a bladder removal when it had not spreadx

[MoyB in reply to Ern007]

🌷🌼🌹🥀🌻Xx Moy

[Ergendl]

Hoping all will go well enough for you to continue with the more conservative treatments, and keep the radical options in reserve.

[Ern007 in reply to Ergendl]

Thats mine idea - try more BCG and Chemo before resorting to the big guns

[Izb1]

I do hope that the cancer hasn't spread Ern and you can go for the BCG and chemo, you have been through so much already. Wishing you well x

[Ern007 in reply to Izb1]

Thank you if it has not spread then I won;t have a bladder removal - use every other option, with bladder removal as the only option left,

[Nula2]

Hi Ern 🙋‍♀️ have everything crossed that you can have the non surgical option 🤞. You must be on tenterhooks waiting to know, but by planning ahead at least you can get across what treatment you want. Take care and keep us posted 🙂xxx

[Ern007 in reply to Nula2]

Well a cysoscopy is surgical by normally home same day, unless they find something to remove then day after

[Nula2 in reply to Ern007]

Ah I see. Well heres wishing you all the best 🙂xxx

[Ern007 in reply to Nula2]

Thank you

[Jaybird19]

a ll the be st for the day, .and enjoy southport. it has some attractive old buildings i am told

. I have been there for one weekend but was otherwise ooccupied . i was sailing in the 24 hr race on the Marine Lake there.

Sailing clubs from all over the country applly to enter this and each boat entered sails round and round for 2 4 hrs No time to get bored . crews could change by leaping in and out without stopping.. ! I was on the 6.00 - 8.00 am slot and dont remem ber much about it . just one big jolly ! my boat was a 14 ft sailing dinghy . easy to sail even when windy . same type of boat as i had myself. My own boat was called Destiny when i bought it second hand for £100. in nineteen fifties S he was so too I met my partner sailing. We bought another larger boat with a keel , when we got together, and raced that together.

this 24 hr race used to happen every year. dont know about it now --- to old to sail now .

i think it is usually september but not sure., so if it happens to be on when you are there just watching enjoy all the sails .

[Ern007 in reply to Jaybird19]

Cheers I will. some 50 years ago we used to use rowing boats on Marine Lake and ones, we got in path of a pleasure boat; Used to do the same on Stanley Park lake Blackpool, they were good days. I have never raced though,

[pegbl]

I wish you well and hope things go in your favour 🤞 xxx

[Ern007]

Thank you xx

[Katinka46]

Thank you for posting the latest episode of your tricky story. And apologies that it has taken me so long to reply. Your ability to be so clear is admirable and goes with your realistic, positive attitude. Well done you.

All the best

Kate xxx

[Ern007 in reply to Katinka46]

Thank you Kate x

[watergazer]

A lot to deal with Ern but you sound very pragmatic. Thanks for the clear information x

[Ern007 in reply to watergazer]

I may eb right or I may be wrong watergazer but my need is a solid plan - I don't want shoving on a surgical list when other options may be available, to me that makes sense/

[watergazer in reply to Ern007]

👍

[Patk1]

All the best Ern007 x

[Ern007 in reply to Patk1]

Thank you x