Recently diagnosed

Hello my name is Dave and last year went through what I can only describe as a nightmare scenario. What initially started as a problem with sleeping lapses suddenly catapulted me into a direction I wasn't expecting, visited my GP and told him of my sleep issue and was duely sent to the pathology department of my local hospital for a FBC. It was only when I recieved a call back and asked to re-see my GP that it was found my FBC showed me as being 80.4 haemoglobin .. at this point I had no idea what it meant, but as you can guess things snowballed as an appointment dropped through my door for a perliminary 'soft' scope endoscopy. From there it was found that I had polyps of which the specialist rated them as benign .. I breathed a sigh of relief, but was told that an appointment for a 'top and tail' would be soon ... low and behold 2 weeks later it arrived and I was scared unlike anything I had felt before. It seems I had a discomfort issue during the colonoscopy and it wasn't fully concluded, however the gastroscopy [think it's right?] revealed I have a hiatus hernia !!. Could it get any worse ? .. well to me yes .. I was told I needed to return the following week for another colonoscopy.

Due to the issue during the first colonoscopy they decided to give me a stronger painkiller and larger sedative of which I blacked out at some point, only to find out that multiple polyps was found with a couple in the 4-5 cm range .. but again the colonoscopy wasn't concluded. I was notified that I has been referred to St.Marks hospital and the next stage was to have a general anesthetic colonoscopy .. or so I initially thought .. this happened by the way two weeks ago. I was told that the idea was to have the 2 larger polyps removed and everything would be fine and not to worry ... the specialist and nurses there was awesome in reassuring me. When I came around from the proceedure all I vaguely remember was a hand appearing and a gentle voice saying his name and that tomorrow we'd have a lot to talk about. I think what I wasn't prepared for was the fact that rather than remove the initial problem  .. something new had come to light which apparently 'shocked' those involved .. a large tumor was found in my ascending colon just above where the small intestine connects .. I wanted to run away and hide .. and at 50 .. that's no mean feat ... also piled on my now tumor issue is the fact it's closing within the area ... and that 300+ polyps was found from my sigmoid colon and beyond.

Where does this leave me I hear you say ... well this past Monday I've learned that an ememergency CT I had has luckily showed me that it's not spreading .. however the tumor is active and definately not friendly, but localised .. o now I have a new appointment coming next week to meet with a consulting surgeon about a forthcoming operation .. something also has been mentioned about cell level elevation in my blood ... still to shocked and scared to understand it all to be honest ... and there you have my nightmare to date.

  • Well I had my operation and I have been allowed to return home due to a very good recovery at this time, like all things I'm still not in the clear but my starting journey has been a good one. My surgeon and nurses was impressed by my drive to beat this and my recovery has seemed to show that.

    My proceedure was a 'laparoscopic near total colonectomy, ileostomy and IDSA' with the obvious background of being for treatment of polyposis and bowel cancer. It was a 7.5 hour time under anthesthia which did render a funny side effect after I had come round and was able to communicate .. apparently in native white South Afrcana ! thankfully this has almost gone now but it was wierd hearing my voice and thinking I don't sound like this !

    The nurses at St.Marks was astounding from my admission to when it was time to leave, in my eyes .. the undisputed heroes in my recovery tirelessly helping all of us that was at our 'lowest eb'. It has been and will be for a while an emotional rollercoaster, but it has felt a huge turn around to how I was when I first wrote this opening post .. never for one minute whilst in hospital did I feel alone or discarded. When I met with my operating team Monday he was surprised and so happy to see the change, I can never ever thank these people enough because on the whole ... it has been a very humbling experience.

    It's now waiting for the next steps .. I'll be going back next week for a day clinic review to see how things are going, the usual blood removal !! .. feel at the moment they have more of my blood than I do. But it's the return in 3 weeks that will shape the things to come, the full biopsy and the DNA defect history to see what genetically caused all this ... am I frightened ? .. yes .. but not as much as before the operation and proceedures that got me to this point, since September last year when this began ... I've never felt that much more positive at what I am facing.

     

    Dave

  • Hey Dave really great to hear from you again and especially with such a great step forward,

    I wish I was in a position to say something South African sounding and be really drole but G'day is about my limit and several thousand miles short of the mark!

    Long old operation and I dare say you've lost even more weight from that! Sounds like you're recovering well though 

    Yep, I guess the "did you get it all" conversation is the big one in 3 weeks time - you will tell us how that goes won't you?
     

    Make sure you get plenty of rest and don't overdo it

    Well done! Good luck

  • LOL about 'G'day' !!

    But in answer to the weight thing, this made me smile so much .. when I was admitted I weighed 88kg on Friday they reweighed me and I was 90kg .. so I was more than pleased, I promised all the nurses and I'll say the same here .. I'm not going to overdo things and each day will I'm sure have a new challenge to contemplate.

    But thank you again for the support !

     

    Dave

  • Well it's been a while now .. and reporting that the first step in finishing a 8 x 3 week series of cycles is coming to a close .. in November I am seeing my oncologist and see what is happening after the course of tablets has finished .. Chemotherapy wasn't fun and there was a few times when I was close to stopping it. Now is the fear of the unknown ... the follow ups over 5 years !

    In about 3 weeks my cetnral line hopefully is going to be removed .. but I think it's all down to how things are before they do that. Did 90% of the course of the infusion of Oxyilaplatin and the tablets being capecitabine ... the side affects have been ominous and yes I have got neuropathy in my hands and feet ... hopefully the oncologist says it may go in around five months ... hopefully ....

  • Wow - Hi Dave

    That is seriously spooky

    Been a long time since we spoke - I had given up the forum for about the last 6 months as I'd gotten to a place where I was ready to move on with my life and I felt that I needed to get off of the forum to da that.

    I dropped in a couple of weeks back just to say hi and then tonight I just saw your post.

    Looks like a lot has happened in the last 6 months for you too.

    My wife's consultant was always quite paranoid about her neuropathy as she was diabetic and the odds are higher it wont go in that case but I'm sure you'll get the feeling back.

     

    Really really good to see you still on here and still fighting and from the sounds of it winning too!

     

    Graham

  • It's been a trek to this point .. feeling a little down to be really honest ... but all the way through the treatment I've been at work alot of the time, had a couple of blips but managed to get beyond them and focus on the goal at hand. I know it's a long way yet to go ... I think when I make the fifth year without an issue .. I'll feel more upbeat .. but for now .. there is alot of anxiety over the first few 'follow-ups' ... as I know my polyposis has a chance of spoiling the party if you know what I mean.