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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1484
 

@john68  ... Thinking of you & praying for you especially,  but also for your wife & family today.  This is big stuff your going through.  I've thought of you so often since you let us know John and you have been in my prayers. . . . .  

Linda

 

Linda


   
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(@john68)
Joined: 7 years ago
Posts: 2041
Topic starter  

Hi Folks, Firstly thank you all for the good wishes. Just home from my appointment. Spoke with the consultant and my tumour while has not spread to any other organs it’s quite aggressive. I have showed up as having an irregular heartbeat which is news to me ?? So they are concerned about this during my treatment. They had intended to do radio and chemo but I am now to get radio only over 5 weeks with 5 treatments each week. So this journey starts in 3 weeks that’s proving this aul heart doesn’t stop in the mean time 😩😁🤗 Ah Folks in good form and will roll with the punches. Stay tuned for the next exciting episode 📺👍.

ileostomy 31st August 1994 for Crohns


   
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Tigerlily
(@tigerlily)
Joined: 4 years ago
Posts: 357
 

@john68 that makes sense. The job of chemo is to slap it around a bit, but it’s the radiation that delivers the knockout punch. So you won’t lose your hair (you might lose pubic hair temporarily) or have any of the chemo side effects either. It sounds like you have a medical team that is looking at you wholistically; not just at the tumour. And that is exactly what you want, especially if there are any unforeseen medical issues, which is not that uncommon. Sounds like you’re in good hands John. Thanks for letting us know.👍

 

Here in Ontario we have an organization called Wellspring that serves cancer patients and their families. You might want to check to see if you have anything like that in your area. Wellspring offered gentle yoga, art therapy, talk groups for patients, and separate ones for caregivers, Reiki and therapeutic touch, music therapy, a lending library of cancer related books and CDs, including cookbooks for cancer patients - too many services to mention. And they were all free. We used their services a lot.

 

Laurie

Just a semicolon


   
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LLNorth
(@llholiday)
Joined: 5 years ago
Posts: 540
 

@john68 You had a big day today. And now you have a course of treatment.

I have heard people say that the medical folks are “angels” - in my experience that is true: I found them to be so kind as well as professional, and they inspired my confidence.

 

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1484
 

Hey John... You had an interesting day today! I hope that your treatment center isn't far from your home...?  Five days a week going for treatment can be tiring, more so if your travelling. Make sure you get your rest too. 

Try not to worry too much.  These tickers in our chest are much more persistant & hardier then they seem or feel.  Hearts also have the ability to regenerate new Cells after a Heart Attack.  Years ago I had a few difficult years with my ticker. The end result was myltiple Catheter Ablations, where they basically cauterized my SV Node inside my heart. It was an interesting experience! 

Hang in there eh!! 

Linda


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4229
 

Thank you for the update @john68! I love that your team is so on-the-ball and are adapting to your needs.

Wow, @tigerlily, that's some good insight. I appreciate you sharing that.

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Tigerlily
(@tigerlily)
Joined: 4 years ago
Posts: 357
 

I looked at Wellspring online (www.wellspring.ca) to see how widespread it is, and it turns out, not very. SW Ontario, BC and Alberta seem to have all the programs, although there are some things offered virtually. I can’t find a Wellspring that offers services to cancer patients in the UK, but it might be called something else. John, your treatment team will know. It may be offered through the NHS, or it may be run by a charity - either way, it’s good to know if there’s something in your area that offers services that are just to make you feel good while you’re in treatment. Please let me know if you hear of anything.

 

Laurie

Just a semicolon


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 543
 

@john68 glad to hear it has not spread. As others have said , it seems your team is on the ball. Thanks for sharing the update John. Thoughts and prayers. 🙏



   
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Tony H
(@tony-h)
Joined: 7 years ago
Posts: 284
 
  1. Hey John , hope you are doing well , just want to thank you for the heads up as it spured me.into action ,
  2. had an appointment with my surgeon and all things going well I should be operated either this coming Wednesday or Wednesday week , he did a quick scope today and some inflammation but none of the other ,
  3. So again thanks for sharing and making me realise what I should be doing 

 Tony 


   
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(@john68)
Joined: 7 years ago
Posts: 2041
Topic starter  

Hi Tony, It’s a true saying Every cloud has a silver lining. I am delighted that you are getting this seen too and so quickly. I am not feeling too bad but definitely the old engine is down a few BHP!! Again any one in doubt well just get it out. Ye take care lad and keep Er lite 🔥

ileostomy 31st August 1994 for Crohns


   
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Tony H
(@tony-h)
Joined: 7 years ago
Posts: 284
 

Thanks John I'll be suckin diesel ⛽️ soon and raring to go 


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1484
 

@tony-h ... Tony, bless you for following through on Johns experience.  Please be sure & keep us in the loop on your surgery.  Your experience may bring something to  light that someone else may need help handling in their recovery from their surgery.

In B C. Canada, we see our GP about concerns, (appt. wait time 4-10 business days). Then if our GP thinks its warranted the GP refers you to the specialist ,( 6 to 12 weeks), the specialist to the Surgeon, ( 3 -8 weeks) and if a biopsey taken by the surgeon shows cancerous the surgical date is 2-3 weeks, depending). A lot can change in that time line!! 

I re-read Johns post & the new ones here & I am thinking that I may need to see a specialist also.  My Dad died from colon cancer that metastasized through his entire body to his bones.  He waited FAR too long to even see his GP! I remember feeling upset about him knowing he had all the symptoms but having the attitude that he was bullet proof.  He admitted to me one day that he didn't want to "end up" with a bag like I have!!!  I'll book a GP appt. after I'm up this morning.   

Thank you for the second reminder guys! 

Linda


   
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Tony H
(@tony-h)
Joined: 7 years ago
Posts: 284
 

Hey Linda ,I have a long family with colon/bowel cancer and John's post woke me up about the risk I was taking by not removing the stump , hopefully it will be gone by this Wednesday evening and I will be recovering by then , as soo as I am able I will report back, 

The waiting is the worst thing but it's less than a week so not too bad 


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1484
 

@tony-h ... I fully agree on the waiting part, it is very difficult & the first place I learned to do deep breathing exercises! If its okay with you, you are in my prayers . 

Linda


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 543
 

Good luck with the surgery Tony. Sending thoughts and prayers for a speedy recovery.


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 543
 

How are you currently doing John? Thinking about you. 


   
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(@john68)
Joined: 7 years ago
Posts: 2041
Topic starter  

Hi Chelly, Have 2 appointments today one for another heart scan and the second with a consultant to discuss treatment which I hope starting soon 🙏

ileostomy 31st August 1994 for Crohns


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 543
 

Good to hear they are working on things. Continued prayers 🙏


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1484
 

@john68  ...So, YES, How are you holding out John ? The waiting for treatments can be scarey with anything, but, for cancer treatments I think it's far worse in my books!! Try not to let your imagination grab you into deeper concerns. 

Based on your experience & Tonys in this thread, l actually went thru with it  & booked my GP Appt. to discuss this matter.   I have nothing else to ask my GP in that time frame so I guess I can't avoid the topic now! Lol, ugh! 

Thinking & praying for you lots.  Stay as strong as you need to be, when you need to be it! 

Linda


   
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