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Living well with bowel cancer

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Baxter2

Off the hook.........phew!

Good morning all you lovely people,

Firstly, I'd like to apologise for my lack of activity on the forum in recent weeks. Sometimes, we all just need to take time out and us moderators are no different!

Back in March, I had my routine 4 month CT scan and it revealed an area or lesion within a large collection of fluid which the radiologist was unsure about so recommended an ultrasound scan. This highlighted the lesion but it wasn't clear whether it was recurrence or not. I then had to have a liver MRI which was done a couple of weeks ago where the reporting radiologist felt this was probably a recurrence. My scans were sent to Basingstoke to my liver surgeon who reviewed them and presented my case at yesterday's liver MDT meeting down there. I am absolutely thrilled to report that they think the lesion is BENIGN!!! I have a biloma which has been there since my surgery and it's felt that the lesion is just part of that, clips and scar tissue from my tricky surgery. I can't tell you how delighted I am with this news. I've still to have my PET scan on Monday and this will also be reviewed in Basingstoke.

I've also been very anaemic recently and had to have a blood transfusion of two units three weeks ago. This made a huge difference to my overall energy levels and breathlessness. It's weird how these things just seem to creep up on you and become part of your 'normal'!

The whole experience was a stark reminder of what we all go through in our cancer journeys and the awful anxiety we feel when waiting for results and decisions. It's just horrible! I've been so lucky not to have had this for the last 4 years!

Anyway, I hope to be more present on here with you all and less distracted with my own BC issues!

Lots of love,

Karen 💛💜❤️💙💚

annie50C

Hi @Baxter2 here’s hoping all will be ok.. as you say you get to have a lovely break All my love as always and you will be in my thoughts :x::x::x: 😘😘💕Annie

Paul C

Hi Karen @Baxter2, sending you strength and best wishes. I hope all goes well and you enjoy the mini break :x::x:

kawa909

Enjoy your break @Baxter2 and fingers crossed for you with the colonoscopy.

Baxter2

Thank you all so much for taking the time to post lovely good wishes despite going through the ups and downs of cancer yourselves @kathyS @annie50C @Paul C and @kawa909. Facing another challenge as youngest son tested positive for covid yesterday. He was here on Friday briefly, so we're having to self isolate now which is no bad thing prior to the scope I guess. I did a lateral flow and negative so will repeat every 2 or 3 days. Think I'll completely avoid people until the 9th July now!! Life eh?

Hope the puppy training is on track Paul? 🐕‍🦺

Lots of love to,you all,

Karen 💚❤️💛💙💜

Paul C

Oh wow Karen @Baxter2, what a hassle, I hope you stay negative 🤦‍♂️. The puppy training is going great, thanks. She’s an absolute delight and very good walking off the lead, with the occasional moment of puppy craziness thrown in. One of my best ever decisions getting Coco - so far! - she’s lovely and I have perma-grin when I take her for a walk. A lovely balance to a whole heap of tests and days in hospital coming my way as I look to begin a phase 1 trial imminently 👍

Baxter2

Aww, I’m so glad your loving having her@PaulC. I’m sure the kids are loving her too! Brilliant news on the trial Paul! What is it and who’s running it? I hope it proves very positive for you. You really do deserve a break!

Sending all my very best wishes for success!!

Karen 💛💜💚💙❤️

bettebette

I am sorry to read both of your latest updates @Baxter2, best wishes for your colonoscopy and I hope your son is ok and you remain clear, what a blooming nightmare. :x::x::x:

Stella 2020

Hope you colonoscopy will be unremarkable @Baxter2 , have an enjoyable break down south too. :x::x:

Paul C

Thanks Karen @Baxter2! It’s a Phase 1 trial being run out of the Western General here in Auld Reekie. It’s called LY3143921 hydrate and is apparently a type of drug called a Cdc7 inhibitor for adult patients with advanced solid tumours. It’s a brand new trial (hence Phase 1), having shown promising results in laboratory studies and studies in animals. I think 38 people have taken part in part 1 of the study and 25 people will take part in part 2. It involves quite a lot of scans, ECGs, skin and liver biopsies, a comprehensive eye test, bloods etc at first and 2/3 days and nights in hospital then taking daily capsules for 21 days (one cycle) for up to 12 cycles. They have no idea if it will do anything for me, but it’s a possible shot, I suppose, as long as I meet the threshold criteria with all of the tests. Better than doing nothing now I’m off all chemo (third line stopped working) and hopefully it will contribute to better outcomes for others even if it doesn’t for me. At the very least I figure they will be monitoring me very closely so will be able to react early to any changes and tweak meds. I’ll just have to see how much it takes out of me and whether I can keep a decent quality of life over the next wee while. 🤷‍♂️

I have my first meeting at the Marie Curie Hospice tomorrow, so I guess I’ll find out a bit more about how they operate and then have a think about how much care I’ll want / be offered at home and when I’d want to be admitted there. Hopefully it will be a case of learning about it and making relationships while I’m feeling ok and then I won’t need to see them for a few months other than taking up any opportunities to take part in some of their sessions…but the reality is that it’s time to think hard about this stuff and begin making some decisions, rather than me being aware that’s is something to be done in the future. 😬

Anyway, c’est la vie. There’s a cracking sunset here tonight and I’ll look forward to a lovely walk with the puppy (Coco) in the woods tomorrow. Always puts a smile on my face and a spring in my step. And I can binge watch two more football games at the Euros later on post-nap too, so that’s all good 👍

Take care, Paul :x:💜

Baxter2

Thanks so much for the lovely supportive comments @bettebette @Stella 2020 @The Blue RSM amd @Paul C.

Oh wow Paul, I felt pretty emotional reading your update. The trial sounds hopeful but as you say, it would be important to monitor progress on it v's QOL. As you mention, you'll be very closely monitored of course so will have accurate indicators as to how well you're doing. I'm so hopeful for it to be successful for you, I really am. You have such a selfless and positive attitude Paul and I have huge admiration for you.

I'm sure the visit to the Marie Curie will be a challenging one but I hear great things about many hospices and what they offer. I'm sure it will be reassuring, albeit upsetting to hear how they can help in the future with you and your wife and family. I believe there are various therapies, sessions and lots of specific support for kids too. Hopefully these are possibilities. This is something none of us want to ever have to think about but realise the importance of it all when dealing with a stage 4 diagnosis. C'est la vie indeed!

I noticed the amazing sunset over in Fife last night too and took a few photos which of course did it no justice. Isn't it quite incredible how we can always find the joy in little things like a beautiful sunset, a walk in the fresh air with our dogs and lots of other little things on a daily basis. Cancer has taught me to notice and appreciate all these things. I get my kicks from swimming in the sea and Loch simply looking around, taking in the scenery and enjoying nature.

Paul, you have such inspirational strength of character. I wish you well and will have everything tightly crossed for success with the trial. Keep living and loving life with your lovely family and Coco!

Lots of love to you and all your family

Karen 💛💜💙💚❤️

Paul C

Thank you, Karen @Baxter2, that’s very kind and greatly appreciated. The visit was fine, so all is well. We’re planning a quick 3 day trip to the Island of Coll next week before the pre-trial assessments all begin, so that will be lovely. Sending you lots of love back, enjoy those sunsets! 💜:x:

Tinkletot

Ok karen ❤ totally understand. I hope all goes good such a rollercoaster this is isnt it. I didnt put on here eith my total pelvic exeneration was on 5th nov and i ended up in hospital till the end of may. Anything tht could have gone wrong did. Ended up stoma was redundant and a new ileostomy which i hate with a passion thy had to position it below belly button so clothes are v difficult plus due to position leaks. Then i had blood clot in leg so opened from top to bottom and am now in wheelchair but progress is slow so iv had a real time first op ended up 22hrs.had 4 others after tht 🙄. Twice family called as thy thot i wasnt going to make it. So heres to 2022 for us both 🥂 hope everything is good for you in london❤❤❤

Baxter2

Omg @Tinkletot! What a truly horrendous time you've had over the last months! Six months is a very long time to be in hospital. I am so very sorry to hear all this and that you're in a wheelchair at the moment too. I think you live alone so I hope you're getting lots of help with your personal care and the house? I sincerely hope the lack of mobility will be a temporary thing and that very slowly with the help of physio, you can regain some of your strength, mobility and independence again. I'll send you a DM since it's ages since we caught up properly. I'm just sorry I was unaware of all of this.

Sending you loads of love and strength,

Karen 💚💜💙💛❤️

ChantelleMcG

What an inspiration to all of us you are! ❤️

Baxter2

Thank you @ChantelleMcG. That's very kind of you to say! This is an old post from almost a year ago of course. I'm Hopeful my next routine scan will be a good one! 🤞🤞.

Sending lots of love to you and your lovely dad!

Karen 🌸🌼🌺🌻🌷

Soo B

Hi @Baxter2 , not been on for awhile , and just read your post .
So pleased for you ,all the scans are good news , you are so supportive to everyone on here , me included !
We sometimes forget our own issues , you truly need time to yourselves as being a moderator you do a fantastic job of supporting and advising others .
Hope all these good vibes continue for you :x::x:
Many thanks for all you do Sue :x:😘

Baxter2

Aww, thank you @Soo B! That's very kind of you to say so! We do work well as a great team!

Thank you once again for your lovely kind comment!

Lots of love,

Karen 🌺🌼🌸🌻🌷

angelj

Hi @Baxter2 wow extra super scary time, so glad to hear you’re clear :x::x:

Baxter2

Oh this all happened almost a year ago @angekj. Thank you for caring!

Lots of love,

Karen 🌻🌸🌼🌺🌷