Stage 4 Bowel Cancer in January 2023. Scan April 2023 No Evidence of Disease. What next?

Hi everyone,

I don't normally post in online forums but I wanted to share my story, as it's national bowel cancer month. 

I'm 41, married with 2 children aged 10 & 1. I would say that I've livid a very normal life up until February last year, when I experienced a rectal bleed which lead me to a trip to my local A&E after my wife (a nurse) looked rather concerned and ushered me out the door. After a few hours of waiting in A&E I was examined by the Dr (he had hands like a gorilla) and told to go back to my GP as it was probably piles and he couldn't feel anything to be concerned about.

My bleed lasted for about 5 days but by the time I got to see the GP it had stopped, again I was examined by the GP and she thought the same that it was probably nothing to worry about but she would refer me into colo rectal surgeon as she felt the piles were probably further up than she could reach, (she was more delicate on my examination than the A&E Dr). It was definitely not cancer in her mind as I was far to young (how many times have I heard this).

I forget how many weeks passed but I was happily going about my busy life, when I had a telephone consultation with one of the colo rectal surgeona, I explained my symptoms and that I was now getting pain and bloating on the left hand side of my stomach. In the Dr opinion it was text book diverticulitis and recommended a CT scan as that would confirm the diagnosis. 

Again a few more weeks past and I had my scan and ended up speaking to another consultant who told me there was nothing on the scan, he would recommend that I lost weight (I'm an ex rugby player) and had further investigation in the form of a Flexi Sigmoidoscopy. I can't tell you how overjoyed I was about the thought of having a camera up my bottom. 

The dreaded day came and after having the world fall out of my bottom due to the laxatives they give you beforehand. The consultant started the procedure. Which was nowhere near as awful as I thought it would be, I watched on TV screens as my consultant navigated my bowel until he found in his words a "large polyp". He took a biopsy there and then. We had a brief discussion and he ruled out diverticulitis but didn't think it was cancer but the polyp would need to come out. He then referred me for another CT Scan this time he wanted my bowel to be inflated. 

CT scan number 2 came round quickly and before I new it I was on the scanner bed with a tube in my bottom pumping me full of air, it's quite possible the most uncomfortable thing I've ever had done(I've got multiple tattoos). 

Results day cam and I went off to the hospital on my own (bad mistake). I sat in the waiting room and was eventually called into the consultants office. There was my consultant and what I now know to be a McMillan nurse in the room and my notes had a red jacket on (I thought this doesn't look good). The consultant explained that they thought I might have cancer (I felt like I'd been hit by a bus) but they weren't 100% sure as the biopsy had come back inconclusive. I had 2 options either try and remove the polyp through a number of small procedures or opt for an extended right hemicolectomy and loose about 2/3 of my large bowel. I opted for what I call the nuclear approach and went with the hemicolectomy.

I had less than 2 weeks before I was in for my operation which was scheduled for 4.5 hours. I laughed and joked with the nurses & surgeon's before going to theatre. I woke up 9 hours later and spent the night in the intensive care unit. My wife later told me that she thought I was dead as the theatre team didn't call her to let her know what was happening. I spent 10 days in hospital recovering from surgery. 

On day 5 or 6 my consultant came to pay me a visit with the McMillan nurse, he pulled the curtain round and proceeded to tell me that I did have cancer and it had already spread to 7 out of the 22 lymph nodes that he had removed, however they couldn't gaurentee that it hadn't already spread. I would need to start chemotherapy sooner rather than later.

After more than a few tears and cuddles from my wife, I pulled myself together and started telling family and friends about my diagnosis, at that point in time it was the hardest conversation I've ever had with any of them. It also made me realise that I need a better way to keep people informed of what was happening. I set up a Facebook group off the back of this as it was traumatic to have to tell so many people and manage there reaction to this less than positive news. 

The person that broke me when telling them the news was my 10 year old son, when he asked if I was going to die. I will never forget the look in his eyes and all I wanted to say to him was I would be fine but I couldn't tell him that.

I met with my oncologist for the first time about 5 weeks after my operation, she said the treatment plan was aimed to be curative at this stage and I would have 3 months of Capox on a 3 weekly cycle. I've got to say I feel I coped reasonably well, I had all the normal side effects associated with Capox and followed this pattern week 1 felt like a zombie & slept alot, week 2 felt like a zombie and week 3 felt okay just in time for it to all start again. I've been left with neuropathy in my hands and feet and fatigue but I got through what can only be described as a grueling 3 months.

I then got some time off treatment for good behaviour, I started to go back to work 2 weeks after my chemotherapy had finished, mainly because I work from home in IT, I had a wonderful Christmas with my very large family, there was over 20 of us at Christmas day lunch. 

Before I knew it January was upon me and time for my scan to see if i had been lucky or the cancer had spread. I was fine on the day of the scan but in the following couple of weeks I managed to convince myself I only had months to live (sounds silly right but my scanxiety was very real). 

My results appointment was bought forward which I thought was because it was bad news but actually my consultant was on leave( if this happens to you ring and ask why your appointment has been moved).  The appointment started as normal, small talk about Christmas & my treatment break. The scam results were then mentioned and my heart sank as I was told that they had found peritoneum metastases and I was now stage 4. It was unlikely that I was curable but I was treatable. The oncologist wanted me to try immunotherapy called Pembrolizumab (Keytruda) as it had shown promise in treating people with the type of cancer that I have. I agreed but was quite upset that the paperwork was now for palliative care, I still wanted to be cured but knew it was highly unlikely after all I'd had many appointments with Dr Google (not recommended he always tells you, your going to die) over the last few months.

My world collapsed and all I could think about was what were my family going to do without me, would my 1 year old have any memories of me? How would my son cope? How would my wife manage with 2 kids on her own. It was just a horrible time waiting to start treatment. I felt well but was being told by everyone how sick I was I just couldn't get head around the diagnosis. I was able to have counselling through McMillan which really helped. 

I started treatment at the end of January 2023, I had very few side effects on Pembrolizumab other than fatigue. I felt the best i had done for awhile and having to go to the hospital a couple of times every 3 weeks didn't have any impact on my life, thanks to my family and friends helping with the children. 

In April 2023 I was due my next scan, this time my scanxiety was nowhere near as bad, as a friend (she has goblet cell cancer) of mine pointed out no news is good news. I didn't get that sinking feeling till I was about to walk in and see the oncologist. It probably didn't help that all the nurse specialist had come to see my results, I've made friends with all of them. 

We sat down and talked about how the treatment was going and how were the side effects, then came the scan results and a knot in my stomach. As I thought it must be bad news as all the nurses were in the room. 

The oncologist said I'm really pleased to tell you on your most recent scan there is No Evidence of Disease (NED). Qué smiles all round and another outer body experience for me, it just didn't seem real. I had been told not to expect anything positive on this scan as it normally takes 6 months or more for this drug to work and here I was getting the best news I had in month's. 

I know this doesn't mean I'm cured but it's a step in the right direction and it just goes to show that stage 4 Bowel Cancer doesn't mean the end or preparing for the end of life. I've done so many wonderful things since I've been diagnosed with cancer that I wouldn't have had the courage to do before, after all what's the worst that can happen I already have cancer. 

I'm not saying that it's been easy because it hasn't but you just have to take each day as it comes. Noone's journey is the same, so just enjoy what you can while you can. 

I don't know what the future holds for me or if the cancer will return, I'm now just concentrating on enjoy everyday with the people I love and care for and that's enough for me.

I hope after reading this it leaves you with some hope for future as I think any with cancer needs that more than anything else.