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Terrified new member from UK...joined today.

Posted: Mon May 13, 2019 11:05 am
by catdylan1
Hello...I've been a guest here for the past few weeks & am amazed at all the brave posts/ stories I have read thus far.
I have joined today...simply because I cannot deny anymore.
Although I presented with abnormal bowel symptoms in June '18.....& went through several blood/ poo tests, UV & CT Scans....all were very normal. By Oct '18...my poo was also very normal & all I've had since then is a dull toothache like discomfort in my lower left abdomen....which I've now got used to.
Things have speedily moved on since then. For the past month, I had a CT Colonography - which showed up 'something' on my descending bowel....followed by a Colonoscopy on 15/4, which showed up same mass. The Endoscopist couldn't get through further...due to narrowing. He noticed 'abnormal tissue,' took bioscopy....which showed nothing - However, He stated it was 'a grey area.' & only way it can be ascertained is through a 'Left Hemicolectomy' which I am due on 16/ May. Removing most of my descending colon & part of my sigmoid.

Since then, I have been living in an alien world. Yes, I'm old at 69 years, but feel biologically young. The only way that I am coping with this is through my bottle of Sauvignon per night & my constant supply of roll-ups - plus watching lots of good Box Sets/ I Player.....to include 'Deadwood.' right now.

Cheers, just saying hello. x

Re: Terrified new member from UK...joined today.

Posted: Mon May 13, 2019 3:24 pm
by LPL
catdylan1 wrote:Hello...I've been a guest here for the past few weeks & am amazed at all the brave posts/ stories I have read thus far.
I have joined today...simply because I cannot deny anymore.
Although I presented with abnormal bowel symptoms in June '18.....& went through several blood/ poo tests, UV & CT Scans....all were very normal. By Oct '18...my poo was also very normal & all I've had since then is a dull toothache like discomfort in my lower left abdomen....which I've now got used to.
Things have speedily moved on since then. For the past month, I had a CT Colonography - which showed up 'something' on my descending bowel....followed by a Colonoscopy on 15/4, which showed up same mass. The Endoscopist couldn't get through further...due to narrowing. He noticed 'abnormal tissue,' took bioscopy....which showed nothing - However, He stated it was 'a grey area.' & only way it can be ascertained is through a 'Left Hemicolectomy' which I am due on 16/ May. Removing most of my descending colon & part of my sigmoid.

Since then, I have been living in an alien world. Yes, I'm old at 69 years, but feel biologically young. The only way that I am coping with this is through my bottle of Sauvignon per night & my constant supply of roll-ups - plus watching lots of good Box Sets/ I Player.....to include 'Deadwood.' right now.

Cheers, just saying hello. x

Welcome catdylan1, Waiting to get answers is the worst.. You are doing what you can to fill the time.. My fingers are crossed for a good outcome for you on May 16. Stay on this forum and share your result and members here can help with advice/share their experience.
All the best to you!

Re: Terrified new member from UK...joined today.

Posted: Mon May 13, 2019 6:13 pm
by kiwiinoz
I hope that is New Zealand or WA Sauvignon Blanc?

Re: Terrified new member from UK...joined today.

Posted: Tue May 14, 2019 11:21 am
by WarriorSpouse
Best wishes moving forward. We are here for you when questions come up along the way.
WS

Re: Terrified new member from UK...joined today.

Posted: Tue May 14, 2019 11:53 am
by rp1954
We did not have good enough blood data from the day of diagnosis. We demanded more blood data the day or night before both surgeries, our last chance. You might also read Life Extension Foundation's articles on colorectal cancer asap.

Done better, minimal "extra" blood data like CA199, LDH, ESR, hsCRP at least, can be very cheap, and were very important later. There is a lot more more blood and tissue data that can be gotten and used, discussed here, that some other doctors can interpret informatively. Or you can compare here. Extra data has often been critically useful for us. It has been easiet to order extra blood data ourselves, because of balky medical staff not so fully informed, and to avoid unnecessary stress with some doctors. The early blood and tissue data that was missing limited and slowed our inquiries and literature quests later, as well as our (successful) efforts for better treatment based on global efforts elsewhere.

Re: Terrified new member from UK...joined today.

Posted: Wed May 15, 2019 10:34 am
by Pyro70
Catdylan1

Sounds like you are stressed enough. Please don’t let RP1954 create more stress/anxiety. Your doctors know what they are doing, listen to them. RP isn’t a doctor and his medical advice is not accepted by any national cancer guidelines. Don’t believe everything you read on the internet. There is some good advice on here, but not all of it is legitimate.

Good luck.

Cheers

Re: Terrified new member from UK...joined today.

Posted: Wed May 15, 2019 4:51 pm
by rp1954
To get more complete data, outside opinions, additional views and opportunities has been a godsend for us, and many members. Many members here would be dead if they had not gone far beyond average care or "standard medicine". Knowledge is power, where one must choose wisely, despite many claims and supposed authorities.

Yes, we did mix regular medicine(s) with mild off-label medicines, natural medicine, foreign practices and US opinions, with published science papers and top tier doctors, very carefully and successfully. We examined each option available, and then chose or added accordingly. Sometimes we queried 6-7 doctors, on one kind of option at a point in time, then went other ways. We definitely dodged a lot of bullets, ignorance and (medical) mistakes. With more and better options, our anxieties receded with knowledge, self empowerment, extra comforts, high quality of life, and affordable costs, along outstanding, measurable, demonstrable results on a regular basis (e.g. 2-3-4 weeks) instead of scan anxieties.

We could not have achieved these the "regular way", at least in 2010-12; no doctor consulted ever says that. In fact, even now we have to be careful giving my wife's history, some doctors start shutting down, "I'm sorry..." [I can't help you] before one of us even finishes to discuss our business.

Re: Terrified new member from UK...joined today.

Posted: Wed May 15, 2019 5:59 pm
by margiej
Best of luck tomorrow, catdylan1. Sending all the healing vibes.
Margie

Re: Terrified new member from UK...joined today.

Posted: Wed May 15, 2019 6:41 pm
by FightCRC
Pyro70 wrote:Catdylan1

Sounds like you are stressed enough. Please don’t let RP1954 create more stress/anxiety. Your doctors know what they are doing, listen to them. RP isn’t a doctor and his medical advice is not accepted by any national cancer guidelines. Don’t believe everything you read on the internet. There is some good advice on here, but not all of it is legitimate.

Good luck.

Cheers


A counterpoint for Catdylan1: There is much to research and it can be overwhelming. What RP has accomplished with his wife is going to be beyond the vast majority of patients/caregivers, even those who are motivated enough to be here regularly. But it is compelling stuff and worth looking into, to the extent that you're able.

I will also say that doctors only know what they know. It may be that your doctors know all, but odds are, they don't. I have seen too many instances where doctors only know what their hospitals can provide and/or can only help you to the extent of their hospital's capability. This is what happened to us: Our first onc was a mechanic, when Stage IV requires an artist. We learned about our second onc thanks in large part to this message board. She's absolutely amazing; and yet, also has her limitations. It's sadly incumbent upon patients/caregivers to be aware of their situation, and all available treatment options. I wish you the best.

Re: Terrified new member from UK...joined today.

Posted: Wed May 15, 2019 9:48 pm
by Pyro70
FightCRC wrote:. It's sadly incumbent upon patients/caregivers to be aware of their situation, and all available [EVIDENCE BASED] treatment options. I wish you the best.


There I fixed/clarified it (in bold).

A good place to start with understanding treatment options are: NCCN guidelines, up-to-date, and onclive.com.

Re: Terrified new member from UK...joined today.

Posted: Thu May 16, 2019 12:30 am
by FightCRC
Pyro70 wrote:
FightCRC wrote:. It's sadly incumbent upon patients/caregivers to be aware of their situation, and all available [EVIDENCE BASED] treatment options. I wish you the best.


There I fixed/clarified it (in bold).

A good place to start with understanding treatment options are: NCCN guidelines, up-to-date, and onclive.com.


To a degree, yes. But what's the medical establishment's view on medicinal cannabis, for example? Both of our oncologists knew/know very little about it, and as a result, discouraged its use.

To be clear, I'm agnostic (at best) on any alleged curative properties. But it's been crucial in helping us manage side effects, which in turn, allows us to better tolerate conventional treatment.

I have to say, I've received much more practical knowledge and advice from fellow patients/caregivers, than from doctors. "Listen to your doctors" as a general principle? Eh...depends. As an absolute? Well, if we listened to our first onc, we very well might not still be here. If you're a passive patient, then follow the path of least resistance and listen to your doctors, always. IMO, however, a patient simply cannot afford to be passive, especially at Stage IV. Research, research, research. Best of luck to all of us.

Re: Terrified new member from UK...joined today.

Posted: Thu May 16, 2019 3:50 am
by stu
Hi ,

I like the NZ variety myself . :D

One thing to remember in the UK we do have a different relationship with health care providers and taking it one step at a time is a great plan .

We have very highly trained surgeons who largely follow the NICE guidelines for protocol . You can google them and have a look at the treatment pathway for each stage . We are a bit more conservative with the use of chemotherapy and it is strictly research lead with a bit of personal interpretation from individual oncologist for stage 4 patients especially. Stage 1 to 3 is governed by current practice and research. Every big clinical decision goes through the MDT team .

Bowel cancer UK has a lot of online information booklets from diagnosis to discharge as does Macmillan and can be sent to you . You will also get a special nurse who will support you through the process .Bowel cancer UK information leaflets have excellent photographs and makes everything clear .

Given our practices are resource governed most are only sanctioned by NICE committees and it is probably very hard to get an oncologist onboard with some of what is spoken about here . What I have found they are cautious whilst in treatment by once you are off treatment you are freer to investigate life style changes . But it is the public purse and that is factored in .

I can’t praise the NHS highly enough . My mum’s experience has been deeply humbling.

So in my mum’s word “ Best foot forwards “ and every success with your surgery .

Take care,

Stu

Re: Terrified new member from UK...joined today.

Posted: Sun May 26, 2019 10:13 am
by DarknessEmbraced
I hope your surgery went well!*hugs*