Bowel cancer returned

Hell Lou, 

I'm OK thanks for asking.

(I still find this site near impossible on my ipad and only just workable on this phone).

I had coffee with my late-nineties parents and my brother this morning and sowed the seed 'blood all good, CT scan bad'. I said I'd let them know more when I hear my options from Birmingham hospital which should be next week.

I know I've got bad news coming and I keep tossing everything over and over, including the meaning of life. The struggle to get back on track from the last op and Chemo is at the forefront of my mind and do I want to go through all that again. No.

I've made it known that I'm available for any of the trials being done at the moment - I'm told that there a number but they're very case - specific so I just have to hpoe that one of them suits me.

At 73 I guess I'm about the oldest on this forum. I've had a mostly exciting and adventurous life and I don't want it to end on a fizzer. And age will only make things harder.

Most important of all is that my 22 year old son is solidly on track doing his PhD in Stockholm and living with his girlfriend of two years standing. So there's not many loose ends. 

I hope I can reason things as objectively when I hear from Birmingham. 

How's it with you? 

Gaul

Hi Gaul, 

I am OK thanks. 

It is really difficult telling parents about the cancer. It sounds as if you broke it to them very gently so it will be a bit easier for them hopefully. It must be a weight off your mind that your son is doing so well also. 

Yes I have been doing a lot of thinking also after my oncologist apt last week. 

The nurse made me emergency apt with the him on Thursday, I had chased it up because I was getting very stressed sitting waiting for something to happen after being told that I have stage 4. He didn't have good news unfortunately,  said I can't have the Capox chemo as last time it affected my heart (and he doesn't want me to die of a heart attack I presume). So he has prescribed 2 new ones which aren't normally used together. Irinotecan and Tomudex. They have to make a new protocol. Basingstoke hospital have rejected me for surgery because if they can't be sure of removing all of the tumours then they won't do it. I have to have a CT scan after 3 months of the chemotherapy and if(a big if) the tumours have shrunk I may possibly have the surgery. I have also been told that I can't have any targeted treatment as the tumours have KRAS mutant cells and very aggressive. He gave me 6mths to a year without chemo and 2 1/2 years with. Pretty desperate news, my poor sister broke the news to my family. I really wouldn't have been able to speak to them without breaking down . Still getting my head round it. I was at work 3 weeks ago with no clue. Just thought I had strained my side a bit digging and hoeing on the allotment over the summer. 

I am a nursing sister in the same hospital as I have had my bowel surgery and chemotherapy treatment, can't remember if I mentioned it before. 30 + years in the NHS and this happens to me. 

Do you know what your tumours are? Can you have targeted chemotherapy or immunetherapy? 

Do you think you'll be offered HIPEC surgery at Birmingham? 

Sorry for all the questions. Don't answer any if you don't want to. 

Hi Lou, 

Nothing like being hit with a sledgehammer is there.

Your prognosis: the medical terms you use go over my head but your predicament doesn't. The elephant word in the room is death and I'm trying to puff myself up to accept the fact that it may be on the cards. I'm an agnostic and anti Christian, so no solace there. BUT as an example, my mum had an emergency bowel cancer operation nearly 30 years ago and was given a maximum 5 years. I had coffee with her this morning. So there's some solace for both of us!

The next thing to address is predicted time on this planet with, and then without more surgery/Chemo. My situation is different to your own in that I'm nearly 20 years older and I don't have the 'why me?' question. I've had a ball, been everywhere and met the best people, a small number of whom I'm in very regular WhatsApp video connection. What a boon! So I don't feel cheated of anything. In a way, and you may reject this, you've been dealt a fair hand in the scheme of things. I've worked in central Africa, even been imprisoned in Chad and I've seen first hand the people who have nothing, absolutely nothing. I've never been hungry in my life.

As I type I'm in hardly any discomfort and I expect to sleep the night through. In the morning when I stand up I will feel as if I've pulled my stomach muscles and it will stay with me taking the dog for a walk, made breakfast (done my level best to eat it) and sat down to hear the news - then the pain goes until I stand up again. Each day it seems to be a little worse. Or is that all in my head?

I'm trying to prepare myself for what Birmingham hospital say. I suppose the thing that concerns me most is, if I refuse more surgery (which I hope I do) how long, how uncomfortable and how undignified will my time here be before I go to pastures new.

Possibly not what you wanted read Lou but that's how I see it. I also know that some people do the great Houdini on this horrible disease.

Courage sister, do not stumble (I've had a few now)

Gaul. 

Hi Gaul, 

Imprisoned in Chad! Scary stuff. What work did you do in Central Africa? You have had an interesting lifetime up to now. And I don't mean to say it's over because I really hope it isn't.Mine has been quite tame in comparison and I haven't always made good decisions along the way unfortunately. 

I worked in the States in the 80's and early 90's. and travelled around Turkey for a few months in the 2000's. and definitely saw a lot of poverty in the east and in the small villages in the Central plains. 

I know you are right I really don't have anything to complain about compared to a whole lot of people around the world. I am not ready to die with dignity just yet. Yes like you I am in a bit of discomfort at times, especially after eating and just noticed I seem to be getting hiccups alot so don't know what that is about, but doesn't bother me.  I don't mind another operation, I know it will be a lot worse than the right hemicolectomy but if it helps I will take it. I know the bit about the mutant cells went over my head aswell when the Dr tried to explain it. I was left wondering later if they investigated the cells after I developed stage 4 or they do it straight after the surgery. I know it doesn't change anything now but if they had said to me by the way your tumour isn't going to respond to any chemo if it comes back and it will be very aggressive, I would have gone into hospital as soon as I started getting symptoms around middle of August which I just thought were a bit of a dodgy stomach and strained abdominal muscles.

I will call the specialist nurse on Monday and ask a few questions. They are very helpful. 

I would love to escape this and I will do my best to help myself fight it. 

Cheers Gaul and have one for me, 

Hi Lou, 

Yes, I share your 'what if' about timing. I was told after my first op that had it not been an emergency they would have been able to do some tests and be more targeted with the knife. They further told me to that if I get any problem in future to complain earlier. This was October 2019 - before covid.

The coloretal nurse says 4 x 2 paracetamol a day to combat the pain until I hear from Birmingham but that doesn't sit well with me. I too will call the MacMillan nurse on Monday. Is covid stalling things? 

I used to drive/lead trans African Adventure holidays for Guerba Expeditions and others and then to do similar in outback Western Australia. One of my less profitable periods but I knew that before I got into it. 

Now I'm watching Fulham on telly. 

Gaul

Hi Gaul,

How are you doing today? I hope you are OK and the pain is controlled. Have you thought about having protein milk shakes if you are struggling to eat much. It may help. 

Forgot to say last time very encouraging about your mum getting over the bowel cancer so long ago. She must be a trooper. I really want to prove the oncologist wrong and survive this nasty disease. 

Did you hear from Birmingham yet or speak with your nurse? Doesn't do any harm to chase it up.

I spoke to my specialist nurse today as I had so many questions to ask from last week's appointment. She was really good and answered most of them. Looks like I will have 3 months of chemo and then be rescanned and reviewed by Basingstoke again. I am more hopeful now and feel a bit calmer. Just a bit tired as not sleeping too well, and my guts are churning somewhat and very gassy. 

Your expeditions sound amazing! I am still curious to how you ended up in prison? It sounds like a fascinating story. Don't worry if you can't say.

Do you follow Michael Palin? I have been watching a lot of his travel shows on catch up as I didn't really watch them first time round. He lassoed a camel in Australia on the last one I saw. What a lovely man. 

Take care of yourself, 

Sister Lou 

Hi Lou, 

I got halfway through a detailed account of how I got put into an open prison when the phone rang. When I came back I had lost it all. F... So the short version is that I jumped the border between Niger and Chad and I got caught. 

No I haven't thought of protein milk but I shall keep it in mind - ta.

Haven't heard from Birmingham yet but I've spoken to a helpful nurse and booked a phone appt for Thursday with my GP to try to get things moving. 

Yesterday I did my daily 2 mile brisk walk almost pain - free. Sadly it wasn't so good today. Apart from 2 Amitriptyline before I go to bed I don't take any other drugs but I know that paracetamol is there if I need to take something. I usually have a couple of glasses of wine then a large brandy in the evening. I sleep well. I have mild constipation despite a glass of prune juice first thing. So I monitor my colostomy bag carefully.

I talk big and tough about refusing more surgery but I might turn to water when I've heard from Birmingham. Maybe I should show more fight - like you. I like Michael Palin travel program - Michael Portillo's too. I listen to radio 4 and watch too much TV. A friend of mine told me to retune my telly and I would get Sky Arts on channel 11 (free view - I haven't got Sky) - it's very good. 

Keep on keeping on.... 

Tara. 

Gaul. 

I find myself watching Michel Portillo's rail programmes and not all together why I like them so much but I do ! Also enjoyed Simone Reeves travels around the equator. A while back now but they were great . 
Take care ,

Court 

Hi Lou

Just to let you know, my PET - scan was clear, I was shocked, it so nice after having had 2 ops and chemo , I am so relieved ,thanks to Basingstoke Hospital.I hope you don’t have to wait too long, I had to do the same as you go onto chemo to shrink the tumours .One thing I did do to help it I went for a brisk walk everyday before the op . Take care.

Best Wishes

Oh that is wonderful news Quiche! 

You must be so happy. I really hope I will be able to say the same thing. Just have to hope and pray that the chemotherapy works and they can do the surgery soon. Can I ask your age please? Do you know if you have KRAS mutant like me? 

Yes I try and have a walk everyday as well, at least 2 or 3 miles.