Just Diagnosed

NeilWalshUN

Countering Colon Cancer - for the second time

Hi,

I’m Neil.

When I was 26 I was diagnosed with rectal cancer (T1 N0 M0 thank goodness) but, three days ago, was diagnosed with colon cancer (staging TBC).

My first cancer journey was with a new girlfriend. 12 years on, aged 38, that beautiful lady became my wife and now we have 4 amazing kids.

My journey - our journey - starts again now.

In one week’s time (30th July 2018), I’ll have a complete colectomy and I’m going to write about my journey here. Maybe it’ll help someone else to talk about difficult topics (cancer, treatment, survival, end of life and lots of other stuff) - but I know it’ll help me to be able to write about what’s going on in my head and for those of you around me to understand what’s rattling around between my ears (because it won’t always be verbalized).

So......here we go

twitter.com/neilwalsh_un/status/1019957794533867520?s=21

N

chris61

Good to hear all has gone well @NeilWalshUN. Rest and recover and best wishes for positive results.

OFJ

Fingers crossed for you @NeilWalshUN , sending hugs and get well wishes :x::x::x:

Polly 1

Just read your Twitter update @NeilWalshUN very good news - take it easy :x:

Liriodendron345

Thinking of you and sending bags full of good wishes, Kim :x:

DianeS

Thank you for letting us all know how you are doing @NeilWalshUN and well done for even managing to post. Hope you recover well and as you already know, please take each day as it comes. Rest up!!!!! Love D :x::x::x::x:

angepange

Glad you are coping Neil. Keep moving forward.:x::x:

KatieR

Great to hear you are now post - op and coping well @NeilWalshUN ...probably up and about doing too much already !
Thanks for the update Keep in touch
Cath :x::x:

NeilWalshUN

Now then

Been away for a couple of weeks and have zero recollection of writing the previous post drugged-up from ICU

So it’s been a busy couple of weeks. I am enormously lucky to find that my cancer had not spread into the small intestine (which was stuck to my colon at the tumour site). I am very lucky to have a T2 N0 M0 Stage II which does not require chemo. Genetic analysis of this tumour, like 2006, is negative for known chromosome risk such as Lynch Syndrome.

So why did I, at 38, have a second bowel cancer? Well, I’ve have pain on and off (mainly “on”) for 12 years. I often felt like my colon was on fire - but when I had colonoscopies, nothing was obviously wrong - until this time. The pathologist who analyzed my colon after it was removed said that it looked like I had radiation burns from treatment. I never had chemo or radio as both lesions hadn’t penetrated the external wall.

The thinking of surgeons and oncologists is that I’ve had a destructive inflammatory disease of the bowel that comes and goes - similar to Ulcerative Colitis - but we’re not calling it that just yet. This inflammation - over time - has destroyed one area (that’s just around the area that the transverse colon turns into the descending colon) and that the DNA has, eventually, gone malignant.

Bizarely I also had appendicitis....!

So I’ve had an ileocaecal transposition, using the caecum (the start of the large intestine on your right hand side) to form a “new rectum” (see pic below). We shall look to reverse the covering loop ileostomy in a few months time and see how this goes (also see additional pic)

But for now I’m still in hospital.

In ICU my heart had two episodes of SupraVentricular Tachycardia which had it heading towards 300 beats per min. I must admit that on one occurrence I thought I was about to die. Whilst the good people of ICU were preparing to shock me back to “normal” I did - in my head - say my goodbyes to my wife, children and friends. I thought “this is it”. Then I thought “no it’s fucking not”.
Apparently whilst just before the ICU folk resolved this, I , in a semi-conscious state, pointed at my chest and said “heart too fast”. They kinda new that already....

So that delayed things a bit.

But the biggest delay was the destructive, debilitating headache that I’d had from the moment I’d had my epidural / spinal anesthesia.

Firstly - it didn’t work - at all. So I had Total Venous Anesthesia instead, followed by opiate pain relief.

But the headache was horrendous - like nothing I’ve ever felt. Three days ago we learnt why.

The failed epidural had caused my brain to drop inside my head and cause a subdural hemorrhage. This is a bleed between two of the three layers between the brain and skull. Unsurprisingly it causes and immense pain, dizziness and nausea (puking on day 2 in ICU whilst trying to grip a stoma and a cut that stretches from pubis to almost my sternum was not an enormous amount of fun).

So as we stand now, we’re having daily CT and MRI to see if this bleed gets bigger, stays the same or shrinks. If it’s growing we’ll be looking at cranial surgery to remove it (FFS), if not, it’s watch and wait.

As if this wasn’t irritating enough, my heart wasn’t beating as strong as it ought to to shift the blood volume around my body - so fluid built in my lungs, called Pulmonary Oedema or Edema depending upon which side of the Atlantic you reside. Basically when I breathed, I sounded like Daryn-bastard-Vadar on a particularly rough day. Ho hum. But it’s virtually gone now.

I walked for the first time two days ago and, having just learned of the brain bleed, I am not ashamed to say that I cried a little bit with relief as the physio supported me. Funny - that’s the first tears I shed in this whole episode (Ashton you nearly got me in the office...nearly...)

So all-in-all we’re going in the right direction. The ileostomy is grand and my amazing surgeon has actually made my belly look better than it did before! Baywatch won’t be calling soon but, y’know...

The support from the hospital staff throughout has been exemplary. They are all angels.

I want to say a huge thank you to my wonderful UN family. The visits, cards, piss-taking has carried me. You are the best and I’m blessed to be with you.

To my old friends and colleagues from British Embassies, Europol and the NCA, thank you too - your cards and (again) piss-taking have been so well received. To have your support still despite having left a few years back is beyond kind. Thank-you....

My parents have come from Ireland to support my wife and 4 children and I don’t have the words for all of you. I literally don’t. You’ve saved my life - again - and I only survive this because of you. “Thank you” doesn’t quite cover it.

Lastly on this one, my thanks to former Prime Minister of New Zealand and former UN Under Secretary General, Helen Clark, who’s tweet to me inspired me to get up off my arse, shave and shower today. These things aren’t normally exhausting - but for me they are - and your encouragement, ma’am, got me moving today - so thank-you.

I’ll be in touch...........

Neil W

Sent from my iPhone

NeilWalshUN

And here’s what an ileostomy and laparotomy look like 2 weeks in....

Liriodendron345

I’m not sure what to say @NeilWalshUN, could you please stop it now and just slowly but surely recover!??! Take very very good care, Kim :x::x::x:

GD62

Hello @NeilWalshUN

Sorry to read your post, and looks like you have been through the mill recently and I suppose talking about your experience might give you some sense of control, That said, a big positive is that you are stage 2 and no chemo, so hope you can find the time to relax and recover well.

Positive healing to all :)

charleyb

Your resection wound looks very neat! My hubbys scar on his back and tummy are already fading, the lung was November and the bowel January, its amazing how quick the body heals!
Glad to see you up and about but so sorry to read what you have been thru!
Please do take good care of yourself.
:x::x::x:

determinedjoan

So v soz you’re having to go through this for a 2nd time, NeilWalshUN. Hope u have lovely holiday with ur wife & four beautiful kids & v best of luck with treatment.
Like u, hv had two separate, primary cancers & like u, still fighting! :x:

Lizalou

What an amazing story @NeilWalshUN .
Interesting to read all the gory details! Hope you are finally on the mend and getting the balance right between lying around taking things easy and getting up and about.
It's great that you and your family have had so much love and support. it makes such a difference.

Best wishes :x:

Chas

Hi @NeilWalshUN a very detailed and positive message. Plus overcoming all of the complications! Proves to me the importance again of family and friends on our journey.
My very best wishes for your future recovery. 👍💪

NeilWalshUN

Thanks - yes every time I’m opened up my abdomen ends up looking better!

Quote from @charleyb:
Your resection wound looks very neat! My hubbys scar on his back and tummy are already fading, the lung was November and the bowel January, its amazing how quick the body heals!
Glad to see you up and about but so sorry to read what you have been thru!
Please do take good care of yourself.

NeilWalshUN

Thanks Joan - keep fighting 👍💪

Quote from @determinedjoan:
So v soz you’re having to go through this for a 2nd time, NeilWalshUN. Hope u have lovely holiday with ur wife & four beautiful kids & v best of luck with treatment.
Like u, hv had two separate, primary cancers & like u, still fighting!

Gypsy

@NeilWalshUN . Sending you all hugs and prayers for your good recovery now. You are completely amazing. I have never read anything like this before and now you are standing and walking as though you have just been for a stroll in the park. Thinking of you and your family.
Gypsyxxxxxx