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Tuesday, February 25, 2014

My Next Surgeries or the Lack of Them...

My health problems stretch back to July and it`s been quite a ride through the good, bad, and at times ugly workings of the NHS. The new year seemed to bring some order to my life health wise, and a basic plan for 2014 appeared to be mapped out. It was not to be a free and easy no restrictions plan but after 2013 and discovery of death lurking within it would be a big improvement.

Following the cancer surgery the surgeon accepted eventually I had no desire to have 6 months of chemo and radio therapy with as he said just a 12-15% chance of stopping cancer form returning.

So the first hurdle was to go through the system, see the Oncologist at Mount Vernon and get a referral back to the surgeon so the stoma could be reversed. Living on the boat and being located far from the hospital means a 4/5 hour round trip by public transport. This was not so much a problem as I feel very fit but my concern was the waste of an appointment. Why should an appointment be used just for me to say no to more treatment?

Some will say I might regret that decision but the outcome is only going to be based on my `no` vote as no one will see the result of the 6 months therapy treatments I declined. So just wish me the best of luck on the decision I made.

Phoning the Oncologist`s secretary accessed an answering machine that stated the messages were monitored several times a day and calls would be returned. After four days waiting for a call, I called again and left another message. Eventually I managed to speak to someone via the main switchboard and was thanked for not taking up an appointment and was told the referral would be processed. Fantastic! Everyone is reading from the same hymn sheet but why did it take 4 days and still no return call?

Okay--I am in the system and I had an appointment mid March to see the surgeon about the stoma reversal. He will by then have received the referral and by then I will also have had the early March  surgery on my prostate ( TURP  ).  Things seem to be going well.

WRONG!!! I have received a letter changing the reversal appointment by two months to May. Still at least I  have a surgery date of March 3rd, 11am admission time for the prostate . A week ago I had a letter to confirm this surgery date except the time was now 7am and would I phone to confirm my attendance on the 3rd.

Now you need to concentrate. I phoned and was told to ignore the letter. My admission time was still 11am; then they phoned back to say it was being changed  to 7am and the letter was wrong, but is now correct. I am rapidly losing the will to live and just said "what time on the 3rd do you want me to attend?" Answer: "11am!! Ooops!!! Sorry," she says, "I`m getting confused. It's 7am for sure."

Ok stay calm says I, and in less than a week the surgery will be done and we can at least go off for a cruise while waiting for the reversal surgery to take place. The actual stoma reversal surgery would  not have  been mid March as I would need a colonoscopy to check all was well through the back gate before a surgery date would be assigned anyway. We could cruise well into summer before the actual op.

Today the Urology dept. phoned to cancel  the prostate surgery as an urgent case has caused the schedules to be revised. They will phone as soon as they have a new date. Of course this means I will need to attend another pre-op appointment. The pre-op is good for 12 weeks and my 12 week time slot ends the day after the cancelled surgery date. How they can safely assume a person is still fit enough for surgery 12 weeks after the pre-op check is beyond me.

There are many opinions as to why our health service is failing and I just..................
Not going down that route; best course of action is to decide how we stand now in respect of what has or has not happened. We can`t change the world but we can take a step back and change our plans for the foreseeable future.

1.  All being well the cancer has been removed and I will live to bore you all through the blog for many years to come.
2.  I have a stoma bag to attend to but this is not a big hardship. It just means the body has a different exit for waste.
3.  The prostate surgery needs to be done but only came to light during the cancer surgery. The symptoms having been around for years so surely I can live with them a bit longer. 
4. As I write this I am 100% fit enough to cruise, although not as fit as before all these health issues materialised.

Although it would have been nice to stick to the schedule and get everything attended to sooner rather than later, things could have turned out a lot worse and I could easily not be writing these words. As I am writing this it might be an idea to tell you of our plans and the reason for them.

The intention is to cruise south to London and spend a week in Paddington Basin, visiting a few places Jaq has on her list. From Marsworth, Watford hospital is on the way south and of course will be on the way back so when an appointment hopefully comes up we will not be too far away. This at least gives us some kind of plan that will not be too badly affected when the surgery appointment finally materializes. I only have one life and Mr. C has already taken up part of it so it is time now to get back to cruising.

A big welcome home to Keith on Hadar. Like me he has had health problems and like me he has a good lady, Jo, to look after him.


Sarah said...

Good for you for making your own decision and sticking to it. It sounds like the 'right' one to me but most importantly it is yours and you should not be called upon to justify it to anyone.

K1 said...

Good to read you remain very positive! :-)

Anonymous said...

Oh my the system across the pond does sound like it is need of serious fixing....but the way you two hang in there and push and pull your way through it and then go cruising is fantastic. Good to be moving again.

Pullman Karen

Unknown said...

Oh how boring yawn yawn yawn. I LIKE your boring posts, LOL may you bore me for many years to come!! If I am about I may pop into Paddington to see you, but as I am not a proper boater I am going for a weeks practice at the end of March so may miss you. Big hugs to you and Jaq xxx

Ken and Sheena said...

Hey Les. Glad (and kind of relieved) to hear that the doctors respected your decision, and didn't try to force you through what they felt was best., or shall we say normal/routine.

Happy cruising for you and Jaq.
As my grandmother used to say "make sure you live every day".

Les Biggs said...

Hello Sarah
Life is about making decisions and all one can do is hope theirs is the right one. Main thing is having a good feeling about the one you make.

Les Biggs said...

K1 positive is the best way or the so and so`s will get you down.

Les Biggs said...

Hello Karen
Yes us Brits put up with a lot as far as the NHS is concerned. Still at least I am fit and can wait.
Always nice to hear from you my darling, best wishes to Jim.

Les Biggs said...

Hi Carol
Not sure of dates but if all goes well it would be nice to see you.

Les Biggs said...

Hi Ken/Sheena
They seem to want to follow a set guide but I feel it`s not for everyone and more important it doesn`t work for everyone.
Worse is having to gamble with your life because of so much doubt about current treatments.

Jo Lodge said...

Hello wonderful couple. Thank you for the kind message. Keith is making slow but good progress and I will do everything in my power to get him through his health problems.
Good on you for sticking to your guns on your treatment. As I have found out, the NHS has a lot to answer for, but I will say Keith's surgeon and doctors were 100%, we cannot really fault them.
May you enjoy happy cruising and hopefully we may see you both at some point. There is no cruising for us this year, but I am sure we will see you somewhere, sometime. Hugsssssssssss

Mike on GARNET said...

Good to hear that there is progress, even if by stops and starts. No chemo is a big decision, but the stats as given by the specialist make it a poor choice given the side effects normally Suffered, and I am sure Jaq's knowledge and care will be far more beneficial.
Have I said I am bored? No, indeed you2 are a major factor in our becoming boaters, and we thank you.

Carol said...

Hi both,

Great to hear that you are both keeping strong and that you've come to your own decision as to future treatment/non-treatment and are now ready to continue your cruising.

Stay well, stay strong and be happy!

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs