Warning! Long story ahead, which contains some graphic images and far too much information for some! Click the headings below to expand each 'chapter'.
For those in a rush, here’s the quick version:
Christmas 2017. I got cancer. Then I learned I have a rare genetic condition. My large intestine was removed. I got really really skinny (yes, I know I was already skinny, but REALLY skinny!). It was rubbish. BUT things are looking up. My wife is amazing. The End.
For most of my life I’ve enjoyed great health. But, in 2015 I had the first of a few visits to the doctor. I became really unwell and learned that I was infected with a parasite called Cryptosporidium, which I had contracted from a contaminated water supply in Preston. I made a great recovery but weeks later I started to notice blood when I was going for a ‘number two’. Returning to the doctors, I was diagnosed with haemorrhoids. So, I began to think that passing blood was nothing to worry about. A few months later, I visited a different doctor due to a similar complaint and, again, haemorrhoids.
Fast forward to November 2017 and I went to a friend’s wedding. In the week following I started getting cramps in both sides of my body while sitting at my desk (no exercise involved). I thought it might be to do with eating/drinking too much at the wedding. But, the cramps were still there after a week and I thought I could also feel a lump in my left side, so I went to the doctor.
The doctor said he couldn’t feel any lumps. But, when I explained I had been passing blood regularly, he suggested a blood test. This came back fine, apart from one dodgy marker: my Ferritin level (a measure of the body’s iron store) had dropped from over 100 two years before, to 20. I was told that anything below 22 is a concern. So, I was referred for a sigmoidoscopy (i.e. a camera where you don't want it!). Due to my age and no history of bowel cancer in my family the doctor suspected I had something called Colitis (inflammation of the colon).
So, on 20th December 2017, rather than enjoying Christmas preparations with our young kids, my wife drove me to hospital for the dreaded sigmoidoscopy. The physical side of the procedure wasn't actually too bad BUT the emotional effect was horrendous. The hospital where I'd been sent was small and had no dedicated cancer team and the doctor performing the sigmoidoscopy clearly wasn’t expecting to see what he did.
At a point in the procedure, the doctor turned to a nurse and asked “How old is he?” and she replied “34”. But, being conscious (albeit slightly high on gas and air!), I replied saying “No, I just turned 35”, to which the doctor replied to me in a concerned tone saying “Are you sure you have no history of bowel cancer in your family?” I replied “Yes, there’s none”. By now I realised that four people were gathered around the screen above my bedside (there were two at the start) and it was clear something wasn’t right and I think I must've fainted, because I had a very peculiar out of body experience whereby all of the sounds in the room were jumbled up and I felt like my mind was working but my body wasn’t. When I ‘came around’ I asked “Am I still alive?” and everyone laughed! (Not in a mean way – I guess it was just an odd thing to ask).
After the procedure, the nurses were treating me very differently. A nurse who had been really abrupt was now being overly nice and that made me suspicious! I was given about 30 minutes to recover in a dedicated area, after which a nurse told me the doctor needed to talk with me and that I may want my wife with me.
So, my wife, the doctor, a nurse and I all gathered in a room with a large diagram on the wall showing the four stages of tumour growth in colon cancer (see image). The doctor explained that I had a tumour so large that he could not find a way past it with the scope. According to the diagram, this is a really bad scenario (i.e. big tumour, likely to have spread and... game over!). He explained that he had taken six biopsies and he felt sure it was cancer. I sat there in shock and my dear wife burst into tears. We were then told I should expect a CT scan imminently to look for metastasis (other tumours). I was then handed a red folder from Beating Bowel Cancer, in which there were some phone numbers we were told we could call. Then we were sent home to enjoy Christmas.
Being five days before Christmas, it was impossible to get a CT scan on the NHS until after the holidays. I was in limbo and, as I've heard from seriously ill people on many occasions, the waiting and not knowing can be the hardest part.
In the mean time, my wife and I had been sharing everything with a mum from our daughter's school who is a doctor/consultant. Before this I had not appreciated that she had joined the medical profession after losing both her father and step-father while she was young. Determined that our young family wouldn’t face Christmas with the prospect of Stage IV cancer hanging over our heads she personally paid for us to a private CT scan on the 23rd December. As if that wasn't enough, she personally delivered the results to us within two hours of the scan and... there was no sign of tumours elsewhere, just one 6cm tumour very nearly blocking my large intestine and some swollen local lymph nodes. We all cried at the relief! Some months later this consultant went on to tell me that she had fully expected to see the cancer had spread and asked me whether I believed in miracles!
(Oh, I learned that the words colon, bowel and intestine are all basically used interchangeably - I didn't pay enough attention in biology at school!).
Unfortunately getting bowel cancer wasn't the whole story for me. The doctors suspected I had a rare genetic condition called FAP (Familial Adenomatous Polyposis) because the sigmoidoscopy had seen at least 30 polyps between my rectum and the tumour. Their suspicion was that because there was such a high concentration of polyps in such a short part of my large intestine then it was likely that it was lined with polyps throughout. Also, the doctors were concerned that I may have other cancers forming in the intestine which were not yet large enough to be detected by the CT scan. For this reason, it was advised that I have my entire large intestine removed, rather than just the tumour area.
This extra news was really hard to digest - not just because I would be losing a major organ, but because FAP is often passed on to the children of those who have it. So, with our heads spinning my wife and I decided to get a second opinion.
Unfortunately, the second opinion led us around in a circle. We were advised by an independent colorectal surgeon to visit St Mark's Harrow - a hospital specialising in bowel cancer and polyposis. However, what none of us knew was that the team working with me at Watford had already discussed my case with St Mark's, so the advice from both places was identical!
A major problem for me at this stage was that there was a lot of guess work going on. The biopsies of the tumour had come back inconclusive (was it even cancer?). There was no way of seeing past the tumour to what lay beyond (what if there were no polyps beyond the tumour?). Also, a clinical nurse at St Marks (Ripple Mann - my new heroine, mentioned in the following section) suspected I didn't have FAP, but something called SPS (Serrated Polyposis Syndrome) which, compared to FAP, seemed like a massively better prospect! But nobody knew.
While at St Mark's I also took a genetic test to confirm whether I had FAP or not. But, the results would take at least three months to come back and the operation couldn't wait. Every decision was difficult and unclear. Prayer was the only thing my wife and I had to really guide our decisions and I felt much-needed peace that removing my intestine was the right thing to do, rather than take a more risky route, like removing the tumour and hoping there was nothing beyond. We'd have to wait for the operation results to find out what the best option was.
Before my operation I had two more sigmoidoscopies. By the third one I didn't even need the gas and air and had a nice chat with the clinical nurse operating the scope - if you're in the care of Ripple Mann (love her name!) at St Mark's Harrow, you're in good hands. AND it turns out Ripple is a good photographer - check out this beauty of my tumour! I know, not pleasant. Try living with it!!
Ripple gave me my first tattoo as well (I have a photo of that too!). I was hoping for a Chinese symbol, but disappointingly it was just a black line to show the surgeon where to cut.
Oh, and the best part, was that Ripple's great work convinced the experts at St Mark's that I could keep my rectum. Woohoo - no bag required!
After a few weeks of scans, meetings and preparations, I was due to have a 'colectomy with ileorectal anastomosis' operation (meaning my large intestine would be whipped out and my small intestine would be plugged into my rectum - job done!). This was scheduled for 15th February; but, it was brought forward at fairly short notice to 1st February. There was a sense of urgency because the tumour was advanced, meaning that it could break through the bowel wall and the cancer could begin spreading (if it hadn't already - we wouldn't know until after surgery). Also, there was a threat that my large intestine could block completely, which would mean emergency/unplanned surgery.
The icing on the cake was that 1st February is my son's birthday. But, my wife made me feel more positive about it by saying "what better present to give our son than his daddy all better?"
So, off I went to Watford General where I was greeted by a massive 6'6" trainee anaesthetist whose name I wish I'd remembered. He did a great job of making me laugh. The last words I heard before going under were "Here we go. Lie back and enjoy the ride!"
Seven and a half hours later and the operation was done! I woke feeling very thankful for general anaesthetic and not feeling anything in my middle, but my shoulders were in agony! My operation was 'laproscopic' (keyhole - five small cuts and one slightly larger) and apparently the gas they use to inflate your insides can shoot up to your shoulders for some weird reason. It doesn't happen to everyone apparently. Lucky me!
I spent five days in hospital and then it was home time for the recovery.
I wish I could say it was great to be home, but my wife had fallen ill with bronchitis, no doubt due to the stress she was under. Now she had two young kids and a useless husband to nurse! Thankfully we had some support from family, our local church and local mums and dads from our kids' school came to our rescue - thank you community!
I was sent home with strong painkillers but, incredibly, I didn't feel the need to take them. However, the surgeon said that a non-negotiable was that I must have an injection to prevent blood clots every day for 28 days. This was horrible! It felt like a bee sting every time, probably because I had literally no fat on me. I lost so much weight (see the lovely pic - not even at my thinnest!) dropping from 78kg down to 63kg.
To regain my strength I tried to walk every day and I'm grateful to everyone that walked with me. I also had some great times walking alone. Well, sort of alone... someone sent me a great reminder of the 'Footprints in the Sand' poem. Here it is for those who aren't familiar with it:
After nearly two weeks of recovery I was struggling to keep food down and was experiencing the worst 'sulfur burps' which made me vomit almost immediately. To add, I was waiting for the results of the surgery. At this point I still didn't know what grade of cancer it was, or whether it was even cancer at all (the biopsies had been inconclusive). The Macmillan nurses had spent time with me on the hospital ward, preparing me for tough news and everything seemed to be pointing to a Stage 3 cancer (or Dukes C) scenario.
My surgeon didn't keep me waiting too long for the results and called me to tell me that the tumour was cancer, BUT there was no sign of cancer in any of the lymph nodes and the type of cancer was much slower growing than first expected (only Stage 2/Dukes B). He also told me that they'd found fewer polyps than expected - only 50 (that's loads for a 'normal' person, but not for someone with polyposis), so I may not have FAP (I'd have to wait a few more months for that result). I couldn't believe it and I still can't! My first reaction was to tell my surgeon that I loved him... and my wife overheard! Haha! Were these results a miracle? Some would say so; others wouldn't. Either way, I'm grateful to God for the life I've been given and all the experiences that have made it interesting, good and bad.
The following week I went back to hospital for checks and also to discuss chemotheraphy with an oncologist. Because of the type of cancer, chemotherapy was offered to me as a matter of course; but there was no sense of pressure that I should accept it. I was told there was an 80 to 85% chance the cancer wouldn't recur within five years and that chemo would only increase those stats by "around 1%". However, I was warned that chemo may have detrimental unknown side effects. So, it felt like a fairly straightforward decision and I politely declined the offer, to which the oncologist said that if he was in my shoes he would have chosen to do the same!
About six weeks weeks after the operation and life was beginning to return to something resembling normality. Although, I imagine life will never be the same again. I managed to travel to an important work event around the six week mark and, mentally, that felt like a great achievement. A huge blessing was that I wasn't prevented from using a laptop and managed to keep one of my work contracts going throughout the ordeal, just! I geared up to working three days per week and using the rest of my time to enjoy some music therapy and an opportunity to sort out the 'life admin' and DIY that had built up over the years. There have been a bunch of other appointments and checks along the way, which I'll blog about some other time. The next major milestone is the six month post-op CT scan, in July/August....