Gone Awol....update

Thanks again everyone.

The multi-discipine team are meeting today and tomorrow I will hear their suggestions on how they propose dealing with my problem.

It would be nice to have a meet up with Pete1950 again, but at the moment I have no idea where I am going to be until I know what treatment or procedure will be. Have to leave it for a while I'm afraid, Pete.

Looks like any bike riding might be off the cards for a very long time or permanently, though.

What a kerfuffle...

...Yeah, I know.

 

Thanks Char........I don't really know what to say either......

......I just feel that three years have been wasted (regardless of the presence of the virus) sodding about with procedures and treatment at the hospital; which seriously limited my bike riding among other things.

I think my mileage on the Harley was less than 500 which includes just 30 this year to get it's MOT.

So apart from my strength loss, it just wasn't worth having it sitting in the workshop for another year at least.

AL

 

Blimey, I didn't know so many people could be nice.

Still can't give a proper update, because I have thrown a spanner in the works.

I don't really want to go into full detail here, but the short version is that despite three local hospital specialist consultants say I am not suitable for a general anesthetic, the multi-disciplinary team have referred me to another specialist at a different hospital.

It seems to me that even though they have been told on numerous occasions I am shielding because of my respiratory illness and very low immunity (and catching pneumonia after seven months of shielding) they are totally ignoring those problems to start off with.

They still want to go down the route of part of my anatomy being removed despite the cancer being only on the surface, but they can't get it into their heads that I wouldn't survive a six hour operation.

Besides, I have survived 57+ years since I had radical surgery and serious radiotherapy for a really aggresive case of bowel cancer when I was 11, in hospital for just under six months. No part of my anatomy was removed during that procedure (well, some was taken out but it was put back in during the operation).

They say I survived because of my bolshiness at the age of 11.

I have told them repeatedly that at my age with my co-morbidities, anatomy removal is 'off the table and not up for discussion' yet they expect me to see the other specialist 70 miles away at the end of the month to discuss the same thing.

'Nuts', is my reponse; he can damn well discuss it with me over the phone......pointless me driving for a 15 minute meeting when I know what my answer will be.

Hopefully he will have the sense to absorb what I tell him and I can revert to regular investigations and the chemo course being re-started......even though that will mean running the coronavirus gauntlet as well.

Thanks all.....I will keep you updated if the stress doesn't do me in first.

AL

 

I'm beginning to get rather waspy....

...I reckon my file / records aren't being fully read by any of them.....

 

I'm OK at the moment Viv, thanks.

As far as I can tell, the local hospital team and specialists simply made a decision (without really using logic to consider their own treatment of me) after their multi-discipline meeting to pass the buck to another specialist for a decision.

That is the person who will telephone me on the 29th. No doubt he will ask if I have any questions.

The first question I will ask is "Have you read and understood my records history?"

For example, after the first tumour removal procedure back in August 2017, I was called in by a senior consulatnt at the local hospital. He told me that it was a very aggressive form of cancer and he wanted me to have a CT scan to see if the cancer had spread (it hadn't) and he wanted me back in for a second procedure to remove more tissue because he wasn't sure if they had got it all in the first place.

I was all ready for the second procedure, having had the pre-op assessment and I was waiting for a date for the operation.

On the day I was phoned with the appointment I was rushed into A&E with pneumonia and a serious exacerbation of COPD (that was when the hospital asked if I was allergic to anything, to which I answered 'penicillin' so guess what they did?)

Yep, that's right, they gave me a huge dose of penicillin so I ended up with a very severe anaphylactic reaction which prolonged my hospital stay.

Anyway, it took nearly 16 weeks to recover from that (and I consider it was never a full recovery) so I missed the second tumour removal operation.

So, in 2018 they carried out another investigation and decided to give me the protracted 'chemo' course, because there was no sign of reoccurrence of the tumour.

After ongoing investigations and several courses of the 'chemo' (which in theory should have been enough) an investigation in August this year showed signs of an irritated area, so minor biopsies were taken.

They confirmed there were cancer cells present, so they carried a another major operation for a deeper biopsy and tissue removal......this showed it is the same cancer in the same location, but still not deep.....effectively slightly less serious than found during the first operation.

The local hospital specialists now say that as the 'chemo' hadn't worked there isn't much point in using it again.

This where we are at now.....they say it has reoccurred so the best course is to have part of my anatomy removed.

I say "How can it be proven to have reoccurred when it is highly likely the first operation didn't remove all the cells....they haven't reoccurred, they were there all the time which is why the 'chemo' didn't work".

Frankly I can't see there is any difference between 3 years ago and now, so why should I permit radical surgery?

There you are, bored the pants off you all.

Thanks, AL