On the 12th February 2020, I was told, once again, that there was a new tumour in my liver, thus starting my fourth recurrence with bowel cancer.
Fast forward to 8th September 2021, when I was informed that my most recent scans, ‘did not reveal any indication of metastatic disease’. Certainly an interesting phrase! Could it be that there’s a new way of telling me that I’m, “cancer free”? Either way, and to state the obvious, neither expression is intended to indicate that I’m cured of my cancer. All I’m being told is that there are currently no obvious signs of cancer in my body. And you know what? That’s plenty good enough for me.
The main purpose of this post is to summarise the 19 months that made up my fourth recurrence. I feel that I need to do this because I’ve found this particular recurrence uniquely difficult. Which isn’t to say that the previous three recurrences were all the same. Far from it:
- First recurrence was in 2015, the year after my initial diagnosis and was really jarring because, suddenly, the cancer was back!
- Second recurrence was in the same year as the first recurrence, which meant that I was denied surgery and put on palliative chemotherapy. I was told I was not expected to recover…
- Third recurrence was in 2018, after a I’d been symptom-free for couple of years. Or, to put it another way: just when I’d got used to the idea that it might all be over.
My fourth recurrence, however, had the additional complication of the Coronavirus Pandemic and associated lockdowns. This added so much uncertainty and waiting to the mix, that my stress and anxiety went through the roof. My natural progression from stress and anxiety tends to be depression. And depression led me to really taking the COVID lockdowns to heart, and more or less shutting myself away from everything, including my on-line presence. For which I can only apologise.
Worst of all, the net result of all these psychological challenges was that I gave up on looking after my health… So, it’ll come as no surprise to learn that I’ve regained all the weight that I lost during 2019. And that, let me tell you, really hurts.
I think it’s fair to say that my fourth recurrence is in the running for the title of, ‘Most Difficult Recurrence’. And this is despite how easy it’s been, treatment wise.
I mean, seriously: there was only one tumour on my liver, and I didn’t even need surgery to get rid of it. All it took were a few trips to the Bristol Royal Infirmary to have SABR radiotherapy treatments and, job done.
Had I known all that in May 2020, when I was having the SABR treatments, this fourth recurrence would’ve been a breeze. But I didn’t. So, it wasn’t!
As it was, the medical plan from February 2020, had always been to surgically remove the tumour. Yet it was only in mid-September 2021 that I was finally told that surgery would not be necessary. To put this into context, had there not been a Coronavirus lockdown, my surgery would have been in March 2020. And this fourth recurrence would have been put to bed in Summer 2020, after that set of scans. More realistically, though, I wouldn’t have given the recurrence any real thought much beyond April 2020, by which time I would have recovered from the surgery.
It pains me to imagine how much healthier, both physically and psychologically, I would currently be, if the proposed medical plan had been allowed to play out…
Now, to be abundantly clear, I am not blaming any of the medical team for how my fourth recurrence turned out. The personnel of the NHS, as they always are, have been magnificent. Sure, back in March 2020, I criticised the decision to cancel all but the most critical surgeries, and I stand by those criticisms. But the decision to put all the nation’s medical eggs in one COVID shaped basket was made by the Government. The NHS, as ever, did everything that was asked of them. Even through the Hell that was Winter 2020/21, and the second wave. Thank you all.
It’s hard to overestimate just how lucky and appreciative I feel to have been born into this country, at this time…
At any previous time in history, I would be long gone. In a significant proportion of the World, even now, I wouldn’t have made it this far. I know how lucky I am, and I’m very grateful for it.
Even so, for large parts of the last 19 months, I’ve been too shut down to contemplate any of this. All I was able to think about was when I was going to get that damn surgery. And the journey to the surgical table was so convoluted, it became almost mythical!
Like I say, the plan from the surgical team had always been to cut out the tumour. In fact, by late February 2020, everything had been lined up with my usual surgeon in Bristol. Almost immediately afterwards, however, the Government decided to dedicate all medical resources to battling the Coronavirus. As such, the private hospital where I have my liver surgeries was put on standby to deal with the influx of COVID patients. Something that never materialised. This meant that an awful lot of highly trained people had very little to do for a surprisingly long period of time.
To offset this, I was given the SABR treatment to keep me going. It was made clear that the SABR was just a holding pattern until such time that surgery became available again. It was also made clear that SABR was not a curative treatment. That it would not completely destroy the tumour, just knock it back. Even so, I was very grateful to be offered SABR at all, given the circumstances.
Come the end of 2020, surgery was back on the cards and things were starting to move forward, at which point my surgeon took ill. I don’t know what happened, because that’s not the sort of thing that gets shared with patients. I do know, however, that it wasn’t COVID related. I’d love to know that the surgeon is now okay, but I don’t know who to ask. I don’t even know whether I’m supposed to ask, or if doing so crosses some sort of boundary. Actually, now that surgery is off the cards, I can probably email the surgeon’s secretary without worrying that it seems that I’m being self-serving. There we go: problem solved.
Anyway, back to the surgery saga…
I was transferred to another surgeon in Bristol and had a meeting with them. I even went so far as to have a pre-operative assessment and meet the anaesthesiologist. A couple of weeks later, after radio-silence, I was told that I’d need a PET/CT scan first. And, off the back of the resulting PET scan, I was told that the tumour had shrunk, so I should wait until after my next scans. After these next scans, I was told that the tumour had all but disappeared, and I should wait until after my next scans. Which was these last scans… At which point I was told that there was no sign of metastatic disease, so surgery was not required.
Like I say, when I look back at all that, I realise how lucky I’ve been.
Photo by William Daigneault on Unsplash
Living through it, however, was a seemingly endless grind of stress and anxiety.
Of course, it didn’t help that, during this time, I was also diagnosed with arthritis of my knee. Something that, out of the blue, meant that I could no longer play hockey. And while, at first glance, this seems completely unrelated to my cancer situation, it isn’t. This is because, also in February 2020, I made a post asking whether a bucket list was a good idea. In that post I wrote:
The problem with illnesses like mine is that they are subject to unexpected twists and turns. These can catch you off guard and floor you. And, at some point, you won’t be able to get up again…
And if, at such a point, you have unticked items on your bucket list, you’re going to be open to serious regrets.
So, is a bucket list worth it?
On balance, I’d say yes.
You see, I only put two items on my bucket list, and one of them was to play Masters hockey for Wales.
I had attended the Over 50s trials at the end of 2019. And, although I didn’t get selected for the upcoming tournaments, I was invited to play in an event after the lockdowns of 2020. This would have got my foot in the door and allowed me to start gaining experience at that level, as well as getting to know the other players. From this I knew that, at some point, I would get my chance. Even if it was just at a tournament in which no one else wanted to play…
After all, my dream was to play for Wales. And while it would have been nice to imagine that I could have become a regular in the team, once would have been enough. No point being greedy!
As it was, though, the arthritis meant that I couldn’t accept the invitation to the event. To do so would have let the side down. The reality is that arthritis means I can’t play hocket at any level, let alone internationally. Even so, it was with great sadness that I withdrew my name from the Wales Over 50s list. And, moving forward, even if advancements are made in knee replacement surgery, I won’t have been able to play between now and whenever that might happen. Which means that I’ll not only have lost the fitness I need to play, but the skills as well.
No, it became clear that this was one item that needed to come off my bucket list.
And this realisation did catch me off guard. And it did floor me.
But, even though it’s taken longer than I can believe, I have been able to get back up again.
As such, I stand by my conclusion. On balance, a bucket list is still worth it, providing you’re sensible about what you choose to put on the list. In due course, I’ll come up with another bucket list. One that reflects the change in my circumstances. But I’m not quite ready for that yet.
Although something that should help get to this point, is that I’ve started therapy again.
In truth, by Summer 2021, I’d pretty well given up on therapy. It just didn’t seem to move me forward as I wished it to. But, as Julie pointed out, I’ve only ever seen the one therapist. And there are lots of therapists out there…!
Photo by Hiroko Yoshii on Unsplash
I finally recognised the hint and found somebody else. It’s only been a couple of sessions, so far, but this new therapist certainly has a different approach. I imagine it’ll take a while but I’m confident that progress is possible.
I think the key take away from all this is that the pressure of living with cancer is cumulative. The end of my fourth recurrence comes only a few months short of the 8th anniversary of my diagnosis.
Eight years, I’ve been dealing with this.
That’s more than a third of my marriage to Julie…
It’s almost half of the age of my daughters!
And who knows how many grey hairs it’s added to the heads of my parents and brothers.
As I’ve said before: cancer doesn’t just happen to the patient, it happens to all the patient’s loved ones as well.
And I think that the best way I can thank all these wonderful people for their ongoing support, is to do my very best to get myself together. To try and get back to the person I was before the diagnosis.
Or, at least, as close as I possibly can…
There you go, then. At the end of this fourth recurrence, I find the first entry for my new bucket list: find my way back to the happier person I was before I developed cancer.
21 thoughts on “My Fourth Bowel Cancer Recurrence”
What a roller coaster. You’re quiet now, hope you’re doing OK.
Hi Lorraine,
Sorry for the extended period of quietness, the depression came back with a vengeance.
Aside from that, I have been cancer free for nearly three years, so things are looking up.
All the best,
Paul
Phew. So good to hear you are ok. I’ve been reading this blog since my husband was diagnosed Christmas 2022 and have kept checking in to see if there’s any update.
Really hope the depression leaves for good and you enjoy your life with your amazing family.
God blesss,
Catharine
Thank you for sharing your thoughts & emotions in this blog, Paul Lewis!
I pray that you will always be happy & healthy for the rest of your life that God has planned for you!
Hello there,
Many thanks for your kind words.
Hello,
I came across your blog on quora and it’s encouraging especially for one who’s going through a similar situation. I am also dealing with stage 4colon cancer.
Hi Anita,
I’m sorry to hear that you’re having to go through this.
And thank you for letting me know that the blog has been of use to you. It was my hope, when I started the blog, that it would help people in a similar situation know what to expect.
Just to let you know that I have not needed any cancer treatment for the last 4 years. And if I can get to this stage, so can you.
All the best,
Paul
Hi Paul, I hope you’re doing well these days! Sending well wishes from Portland, Oregon.
Hi Tristin,
Thank you for your thoughts.
I have been cancer free for about 4 years now, which is a very encouraging period of time.
Unfortunately, a somewhat debilitating bout of depression has kept me under wraps for a while, hence the delay in replying. On the bright side, I may well have turned a corner in that regard…
I hope that life is treating you well.
All the best,
Paul
Hi Paul! Thank you for so generously sharing your experiences. I’m so happy to read in your 2023 response to the other comment you have been cancer-free for 3 years. That is wonderful news! Depression is extremely difficult, just know you are not alone. Reach out when you need someone. If you wrote about what you are still dealing with, it may help. I know your perspective would certainly resonate with others and help them as well, if you did feel like writing about it . Best of all life’s joys to you and your loved ones!
Hi Becky,
Thank you for your kind words of support.
I think I’m finally starting to emerge from the worst of this period of depression and, I must admit, I’ve been thinking along similar lines.
My main concern is that detailing my depression-related thoughts, solely on paper, might do more harm than good to a reader in a vulnerable situation. Which means talking about it to camera, with a link to the video and a transcript on the website.
So, all I need to do know is become proficient at video editing and brave enough to make the videos…
Piece of cake 😉
All the best,
Paul
Hope this message finds you well.
I’ve been reading your story and how remarkable your journey has been. My husband has been battling colorectal cancer since diagnosed Aug 2018. It was stage 3 at that time. Had surgery for ileostomy, radiation to shrink tumour then surgery to remove tumour then 4 months of chemo. No evidence of disease on the scan so treatment stopped. That was short lived though, 6 mos. later recurrence in the liver and lungs. He received chemotherapy for 3 years keeping things status quo but then gradually stopped working. Has been on immunotherapy since then. Scans every 3 months. Took a short 2 month break because of fatigue and tumours began getting larger so he’s back on treatment again. Such a roller coaster ride. Definitely a disease that impacts not only the oncology patient but also the family. Just keep pushing through. Sometimes hard to balance quality of life during treatment but always hoping for quantity. He’s 5 and 1/2 years surviving thus far.
Thank you for sharing your blog. Take Care
Hello there,
Sorry I’ve taken so long to reply.
While I’m currently doing okay on the cancer-front, depression has kept me locked up for a while now.
I’m so sorry to hear what you and your husband are having to go through.
My best wishes to you, him and all of your family.
It’s at times like this that I wish I had faith, so I could pray for you all.
Paul
Are you still blogging? Your journey has been inspiring and remarkable. Hope you are doing ok. I messaged before but didn’t get a reply.
I also wanted to ask you a question. While between recurrences …. how long you were off treatment, if at all ?
My husband has been receiving treatment since diagnosed Aug 2018 without much of a break ( had ileostomy, radiation to shrink tumour then another surgery to remove it followed by 4 months chemotherapy. June 2019 Scan showed no evidence of disease so treatment was ended.
Bang ! Stage 4 recurrence Jan. 2020 Metastasis liver and lungs. Treatment keeps it fairly stable but took a 2 month break before Christmas and a new tumour grew in the liver and the ones in lungs got larger. Back on treatment. It’s been a constant battle. Hanging onto HOPE. The fatigue has been debilitating for him, unable to do things in life he always enjoyed. A hard road for the whole family. How are you and your family coping?
Take Care
Thanks for sharing your story. Hope you are doing well. God Bless.
Hi Sheila,
Sorry I didn’t reply to your earlier message. I’ve been away from, well, most things really for quite a while now. This current bout of depression is really doing a number on me.
With regard to my recurrences, the first few came pretty thick and fast. The scan after I was told I was “cancer-free” revealed more tumours and I was moved on to palliative care and given the appropriate type of chemotherapy.
Fortunately, I responded much better to this second type of chemotherapy, and it was several months before my next recurrence. Since then, the gaps between recurrences have continued widening. It’s now been about 4 years since my last treatment and, hopefully, my scans in August will do nothing to spoil this run.
I’m so sorry to hear what your husband is having to go through. In my experience, a cancer diagnosis is harder on the family than it is the patient. How my daughters, who were 10 and 12 at the time of my diagnosis, have come through all this quite as well as they have, I don’t understand. But they have.
And please be assured that your efforts are very much appreciated by your husband. I know that I’ve never quite been able to articulate the gratitude I felt, and still feel, towards my wife: but it’s there.
All the best,
Paul
My daughter has recently been diagnosed with rectal cancer. Don’t know what stage it is yet. Your story is quite an inspiration. How are you doing?
Hi Shari,
I’m so sorry to hear that your daughter is having to go through this.
I’m glad my story is of some use to you. It’s nice to know that the blog can be helpful.
I’m doing okay, thanks. I have not needed any cancer treatment for nearly 4 years, an ongoing new record. And if I can get to this point, then your daughter can too.
I wish you and your daughter all the best,
Paul
I got a stomachache now from reading about your journey. I have a pack day of classes but wanted to say ‘hello’ from Japan. Hope all is well.
Hi Candy,
Hello from England.
Sorry for the stomach ache, I hope the classes went okay.
Thanks for getting in touch,
Paul
Just found this blog and love it. I’m just now finding out I have a liver lesion 1/2 inch X 3/4 inch. Had stage one colon cancer three years ago and it was removed. Now in 2024 with this lesion on liver found on ct now I’m having a pet scan. Anyway not eating cause I’m bummed so my wife is making me eat which is a good thing. I want to be positive but go into dark places with what ifs so any advice? Like resection is good? Im nervous scared and want to live for my family as I have 4 boys ages 20 to 31. Thx
Hi Mike,
Sorry to hear that you’ve had a recurrence, that doesn’t seem fair after a stage one that was removed…
Now, I’m going to say something that is going to make you think I’m a fool. I know this because every time a consultant or surgeon said it to me, I thought they were fools.
Here we go: 1/2 inch by 3/4 inch isn’t that big…!
Sure, it sounds big and, if you’re anything like me, you’ve gone around the house picking up things like grapes and saying, “look at the size of this thing!”.
But the important thing is that it isn’t big to the surgeons, and they operate on bigger all the time. Seriously, it’s all in a day’s work for those guys (and girls – mine were all guys).
In terms of advice:
1) Always listen to your wife, it’s easier in the long run and, if she’s anything like mine, she’s probably right.
2) Talk to someone about how you’re feeling. It’s good to get it off your chest. Maybe make sure that the person you’re offloading to has someone else that they can offload to, so no one gets overwhelmed.
3) Start a journal. It doesn’t need to be anything fancy. Mine was a Word Document. I wrote the date and time and then dumped everything that was on my mind into the computer. It really helped me get through some tough times.
4) Liver resections are usually done with keyhole surgery. They’re quick and relatively painless. That said, they inflate you with Nitrogen to get space around the liver and, while they’ll try to suck it all out at the end, some will probably be left. I mention this because after you sit up after the surgery, you might feel a sharp pain in your left shoulder. This is just referred pain from the leftover Nitrogen bubbles touching your diaphragm. It freaked me out the first time, hopefully you can skip that part.
5) We all feel really anxious when we’re waiting for scan dates and scan results. It’s called ‘Scanxiety’ and you’re not alone in feeling it.
I have no doubt that you’ve got this. As an example, it’s now been 4 years since I last needed cancer treatment. If I can do it, you can.
All the best to you and your family,
Paul