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Beating Bowel Cancer Community

Just Diagnosed

AlanH

Head's a bit fuzzy, trying to come to terms with it.

I was diagnosed with Crohns Disease in early 2008 and have been taking azathioprine to manage and never had any surgery for my Crohns luckily. Had been having what I would describe as bad reflux problems for last year and was originally told duodenal ulcer. After three severe episodes with one taking me into hospital, lots of tests followed. To be brief......1) I had a MRI scan in 2008 that showed I had gallstones but two consultants missed this until a third found the scan just before Christmas 2017. 2) I have had 2 x MRI, 1 x CT and blood tests. 3) Hospital found an abnormality on my liver less than 1cm in size and suspect it to be a tumour. 4) Following a colonoscopy in late February 2018, a suspicious area was found which they think is cancerous so they want it out. 5) I am booked in for 16th April 2018 for bowel resection surgery.

I am a 48 year old family man, with partner of 11 years, four kids with two at home, my beloved dog, business owner, have become a very keen grower of vegetables, loves sport and am a very low maintenance, happy, family guy. My world seems to have been turned upside down now and although I believe I know exactly what is going on, I keep getting 'fuzzy head' moments where I sit and ponder my life away.......wonder if this is it for me?

I plan to keep working until the Thursday before my Monday operation, then I have to take the necessary bowel preparation liquid to be ready. I have made up my 'go bag' already, books, magazines, DAB personal radio, ipad etc...etc... so you would read this and think "this guy seems focused and ready".........I am so not. I have watched post operation videos to see how the land lies, looked at diets, I know I am going to be off work for four weeks, so from the outside I am prepared and ready. On the inside I am worried sick.

That's me, don't think I've missed anything, I hope that all of you have a great and successful surgery and recovery and hopefully I will be joining you :)

KarenE

@AllanC. Glad your op is over and you’re up and walking about. It will get easier every day. :x::x:

AlanH

Hi All, so I am settling down now for what I think/hope is my last night in hospital, I’ve gone all day eating with no sickness yet, been disconnected from pretty much everything, just the sheaths to come out and 1 x cannula but cannula not been used all day. Just on paracetamol tablets at minute. Got some griping pains but told that good, bowels opened four times in varying outputs today, been signed off by physio, pain management, surgeon, aggressive recovery nurse and my name on board for discharge tomorrow. Will be so pleased to get home, hoping my night is good and I can squeeze in some sleep. Thanks to everyone, I will post again in a day or so when settled in 😀

Jim3rg

@AlanH Brilliant news that you could be home tomorrow, Hope you have a good nights sleep, then an even better night in your own bed. The term 'aggressive recovery nurse' sounds like an american wrestler's medical ade.

Good luck on your recovery, take care and take things easy for a while.

Jim

Baxter2

Great news that the plan is for you to be discharged today @AlanH

You’ve done so well and I bet you can’t wait to get home and into your own bed!

Lots of love and very best wishes,

K💚💙💜💛❤️

LWJ81

Hi @AlanH. I hope that you get home today and feeling better!
Have been reading your updates :x::x:

Elmac

So Glad to hear that you are at home and can sleep in your own bed - I got home yesterday and so was in my own bed too.

Although I was given a morphine pump (I asked if I could have a 'high' as I had never taken drugs before - but they said 'No') but I used it as little as I could knowing it caused constipation. I also asked the surgeon if she could do a 'tummy tuck' whist she was there, but all I ended up with was a large zipper with about 25 staples! One of the night nurses said the surgeons like a bit of fat as they can stretch it more easily!

The chewing gum worked for me - I'm sure thats what started my bowel working.

As you say, the staff at the hospital work incredibly hard and are so kind and helpful, but so short staffed. Having said that the lady in the bed opposite me went into cardiac arrest. I had woken up about 4 with a need for the loo, and I could see her trying to get out of bed and calling for help. She was in her 80's and was a passenger in a car crash and had broken ribs and sternum. I buzzed for the nurse who came remarkably quickly, got her sorted back into bed and was in the process of setting up a paracetamol drip, when she suddenly called her name - no response, the nurse obviously hit the panic button and the team were there within seconds - they drew the curtain around my bed, so they had free access to her, so I had a shadow display going on behind the curtain - they did manage to resuscitate her. My bowel forced me out of bed and I had to slip through the curtain to get to the loo - no way was I going to call for a commode with everything going on so I saw all the paraphernalia and medics that were dealing with her - I was very impressed - much more so that watching a hospital programme on TV. I asked the nurse next morning as her bed space was empty, but she had been moved to intensive care and was talking ok - so very relieved all was well with her.

Now it is slow and steady but a bit aggrieved that I missed the first real week of Spring! Hope all your garden and allotment are thriving under your family's care - but isn't it lovely that they all rally round. My daughter and grand-daughter are coming down from Scotland for a long weekend, the 7 year old informed that she was coming to look after Grandpa and GrannyMac and read me lots of stories and mummy was coming to do all the work that GrannyMac did when she went up to Scotland - like the washing and ironing!

Get up and about and enjoy the sunshine - that's what I'm going to do today as it looks as though it is going to be a beautiful day here in Brighton
Elaine

AlanH

Hi All, I am fast approaching my first week at home recovering. My wounds are healing very well, my Lisa thinks I have vampire healing powers 😄 the discomfort is manageable and I have been sleeping, eating and bowel movements okay. I heard from histology today: they removed the complete tumour with good clear margins. Some nodes were affected but these were also removed fully with clear margins. The nurse said everything was removed successfully. She has arranged for me to see an oncologist in about six weeks time to discuss chemo. She said what I had is gone, no spread, it’s out but that I am higher risk of it coming back again at some point, not that it will, but the risk is there. If I were to have chemo, I could reduce that chance by 50% she said. I will now take my time to research the alternatives to chemo and go to my oncologist appointment with an open mind. I believe that my tumour was a result of a nasty area of Crohns turning nastier. It was this one area that was highlighted back in 2012 but they thought it was just a flare up. With this nasty area of Crohns out with the tumour, I think I have reason to be hopeful. Hope everyone else doing well 👍🏻

Jim3rg

@AlanH Looks like recovery is going well for you and your wounds are healing at vampire speed. Good luck and hope for the best at your meeting with the oncologist, let me know how that goes.

Jim

Elmac

So glad to hear from you @AlanH and to hear that they got all the tumour out but a shame that some of the lymph nodes were affected. You were lucky to get your histology back so quickly - mine they said would take 2-3 weeks to come back, but the Macmillan nurse said she would phone me as soon as they were back and a MDT team would meet and make a plan for me as I am going to go down the chemo route as I know from the CT scan that at least one node is affected. It is the waiting time that is the worst part of this journey.
Everyone has said how well I look and I too am moving quite freely and I am making sure I get a walk in every day

AlanH

Hi All, had a letter from the hospital today, oncologist appointment on 22nd May, that’s quicker than expected. I seem to be doing okay, few little niggles now and then but pretty good on the whole. I hope you all recovering well 😄

Jim3rg

@AlanH Glad your doing well and good luck with your appointment, I will have been on Chemo tablets for 11 days by then, so should have an idea of what to expect in theory.

AlanH

Hi Jim, that’ll be useful, you are doing a great job being my guinea pig 😂

Jim3rg

I had a chuckle at that, glad I can be of service... I think! :P

Jim

AlanH

Hi All, have had a strange week. My post operative scars are healing great although been getting a few niggly stabbing pains now and then, my recovery nurse says for me to expect this for another few weeks, it’s everything getting back to normal she said. At the start of the week my other condition raised its head! If you have read my bio you will see that I have a problem with my liver. I found in January 2018 that I had gallstones and they were present on a MRI scan back in 2008, but not acted on. I have liver damage in the form of cirrhosis and earlier this year they found a very small spot on my liver, right by the biliary tree. They are undecided what this actually is but because my routine colonoscopy found the tumour in my bowel, this liver issue was put aside so they could tackle the more important bowel issue. At the start of the week I noticed my urine was very dark, my stools very pale, I was feeling nauseous and then on Wednesday I had a tinge to my eyes!! One call to my recovery nurse on Thursday and I was at the hospital at 4pm having a blood test. Thursday morning she calls, my LFT result was very abnormal and said she had spoken to my liver consultant who arranged for a scan today at 12.00. Have the scan and make my way to the ward and my consultant will see me as soon as scan on system. As you do, thinking the worse, it’s the lesion, has it grown, is it now an obstruction.......... turns out the scan showed no real change to last one (my real concern was that it was going to show that it had grown) and that he couldn’t see a gallstone causing an obstruction. He said really only one of two things in his mind, 1) the liver was having a strop/reaction to my surgery on 16th April (he thought if it was that it would have happened earlier) or 2) it’s an infection in the bile duct. He was satisfied with the second option and I came home with a 7 day course of antibiotics specific for this kind of gastrointestinal infection, another blood test next Wednesday and sit and wait for him again and he’ll slot me in between his clinic 👍🏻 This liver consultant is absolutely top notch, it was he that found the gallstones MRI mistake, he that organised all my tests and scans, he that performed the colonoscopy on that terrible day back in February when we had ‘snowmageddon’ (he called me in earlier to get it done) and he who found the bowel tumour and got me my surgery as quick as he did. I am very grateful to Dr James Neale at Torbay Hospital, he is a Consultant Gastroenterologist and runs the ward I spent my week on. Now hoping for a restful weekend and getting the antibiotics to kick in ASAP so I can eat and function again properly. Sorry it’s a long post, clearly I had a lot to say 😂 Alan

Jim3rg

@AlanH you have certainly had a busy week, hopefully those antibiotics will sort it out. If it helps, I still have the odd niggle specialy when the bus driver forgets about those road humps.

Good luck and best wishes 👍

Jim

AlanH

Hi All, so finished the course of strong antibiotics to treat the bile duct infection, that sorted now, but as a side affect of the antibiotic, I now have a really nasty dose of thrush. Taken the ‘one tablet medication’ Friday and yesterday, no progress. I am on a train back to Torquay right now, due in about 2.15pm, when I’m home it’s a call to the out of hours doctors and no doubt another visit to Torbay Hospital where they are based - can’t do another day/night without the right treatment 😥 If it’s not one thing it’s something else at the moment, I thought I had enough to deal with already 🙄 Alan

GD62

Hi @AlanH sorry to read about your secondary infection and the antibiotics as you state can cause thrush which can be difficult to shift. Probably have you fluconazole 150mg but you probably need longer course and some topical creams if it's on your skin too.

You live in a lovely part of the world, but have a lot on your plate with a business and family to support too.

Jim, Wishing you all the best and positive healing :)

GD62

sorry @AlanH called you Jim, as this capox makes me a bit muddled sorry :-:x:

Lizalou

Hi @AlanH

So sorry to read your update, Hope you have managed to get some treatment for the thrush, not fair when one issue leads to another. Hope you are feeling a bit better today. :x:

AlanH

Hi All, I decided to tough it out yesterday, not really fair to turn up at the hospital just for this, so currently sat in my doctors waiting for my 9.20 appointment. My aggressive recovery nurse just rang as if she must be psychic so I brought her up to speed also. It’s hard trying to stay positive when just as you think you are turning a corner, something else hits you. Just wait, I’ll just be feeling fine and my oxiplatin will start 🙄 oh well