I'm now offically in remission!

I got the offical all-clear on Wednesday, 2nd November 2022. To be told by your Oncologist that you're offically cancer free is like the removal of a huge weight that has been pressing down on you (in my case, for the last 18 months). The way it's shown on the TV ads is so accurate and true. It's just pure relief followed by a release of uncontrollable emotion in the form of floods of tears. I've never felt relief like it - EVER! Apart from the obvious things that go through your mind like still being alive and having the rest of your life to look forward to, it's also the realisation that you don't have to endure any more treatment.
I'm often asked what cancer treatment is really like and I normally reply with one simple word → BRUTAL.

If you read the first part of my story last year, you might remember that I published that from my hospital bed having just started a new course of Chemotherapy. That was Wednesday, 12th January 2022. My intention was always to provide an update on how that treatment went, how I'm doing now and some of my plans for 2023 to try and raise some money for Cancer Research - so that's basically all this is. Now that I'm healthy again, I want to share some of what I learned and hopefully try and help by removing some of the fear of the unknown that I once felt. Everybody has a different experience with cancer and the treatment involved and may suggest other things, and there are so many different side effects depending on the treatment, you could fill a book. But I hope this is a good start.

Most importantly though, I wanted to take the opportunity to say thank you to every single person that took the time to message me, email me, visit me, click a 'like' button and just wish me and my family well while we were going through this. It's so hard to put into words what that meant; and the love, warmth and appreciation that was and still is felt when reading those messages.
Thank you - It really does mean the world ❤️

• Read On

So, what's chemo like?

I won't lie, it's not good.
It's safe to say that before I had cancer, in that time when I'd never really thought about it much or really understood it, something like chemotheraphy was just known to me as something cancer patients have to go through. Of course it is that, but yet chemo is not all one and the same as I always assumed it was. It's so different for every one that has to go through it and there are many different types and ways in which it can affect you. For me, I thought the first time was hard enough in 2021, but I have to say the TIP Chemotherapy in 2022 was much, much harder.

In terms of side effects - it starts with everything tasting funny, or just plain nasty!
Chemo drugs, of which there are many, all work in the same way - they kill cells that divide and grow quickly (like cancer cells). But the whole body is affected, so there's collateral damage of healthy cells that causes a wide range of side effects. Because chemo is hard-going, treatment is given in cycles. Most drugs are given via a drip over several hours, but some cancers mean you have to have chemotherapy over several days in hospital. For me, I experienced chemotherapy as an outpatient the first time in 2021 and then as inpatient in 2022. Both those treatment plans were on 21 day cycles. In my case, I would say that having chemo as inpatient was harder for a number of reasons, but particularly with no visitation being allowed at that time due to Covid restrictions still being in place, it made the whole three months a very lonely time.

It normally takes 12 to 24 hours before side effects start, and the first thing many people notice is a funny taste in the mouth - for me, it was like a metallic, chalky taste. Not nice. It completely changes your enjoyment of food, and tea and water taste awful. I'm a big coffee drinker, and for the months of going through this, that wasn't even an option for me. I found that many salty things became unbearable, but my sense of taste recovered slightly in between cycles, and during that window I could eat some foods that I wouldn't have entertained a couple of weeks earlier.

You have to make sure that you consume enough liquid - two to three litres a day - to make up for the extra sweating and the digestive problems that you suffer. For me, my 'go-to' became sugar free Sprite. I'd drink cans and cans of the stuff, but only if it was ice cold. Once it had got to room temp, that was it, I could no longer get it down. It was generally the only thing I could drink and actually enjoy in between water, which tasted weird. I was told that I couldn't eat rare meat, raw fish or blue cheese and if ordering take-away to make sure that the hygeine rating of the outlet was no less than 5. This was all designed to prevent getting a stomach bug that could be potentially serious, but coupled with the loss of taste it made eating and drinking generally a real challenge most days.

Keep painkillers handy and look after gums.
Some chemotherapy drugs can make you feel very, very sick. This usually comes on a few days into a cycle. There are tablets that can stop this, but they might not be enough. If you're still feeling sick, you can contact your oncology nurse who may suggest additional drugs. A sore tongue, bleeding gums and mouth ulcers are common, as chemo dries the mouth. So, oral hygeine becomes extremely important. You have to brush your teeth after every meal and use an anti-bacterial mouthwash several times a day. The next thing you notice is a headache, pain in your bones and joints, and you often feel shivery as if you have the flu. I went through boxes and boxes of paracetamol and ibuprofen. I was prescribed codeine for additional abdominal pain caused by the daily injections of growth factor drugs. Chemo drugs also kill the gastrointestinal tract, which means heartburn and other gastro issues have to be dealt with.
Like I said, it's not good, but I suppose it just is what it is. Being a classic pragmatist, I just got my head down and got on with it. Not a lot of choice really at the end of the day!

Trial Treatment Plan - Cancer Research UK.

In addition to chemo, my 2022 treatment plan included stem cell transplants (also known as bone marrow transplants). Stem cells are special cells produced by bone marrow (a spongy tissue found in the centre of some bones) that can turn into different types of blood cells. The 3 main types of blood cell they can become are:

• Red blood cells – which carry oxygen around the body
• White blood cells – which help fight infection
• Platelets – which help stop bleeding

A stem cell transplant usually involves destroying any unhealthy blood cells and replacing them with stem cells removed from the blood or bone marrow. In my case, the treatment plan I was on was part of clinical trial for Cancer Research UK. In summary, the trial involved the administration of double the normal dosage of chemo drugs than what would normally be given on a TIP chemotherapy plan. So what would normally be a 2 hour infusion, would be done over 4 hours etc. With the dosage doubled, it was known that stem cells would be completely destroyed, which explains why my plan involved the transplants - which was designed to put healthy cells back into my body following the chemo to aid recovery.

What does a stem cell transplant involve?
A stem cell transplant can involve taking healthy stem cells from the blood or bone marrow of one person – ideally a close family member with the same or similar tissue type – and transferring them to another person. This is called an allogeneic transplant. It's also possible to remove stem cells from your own body and transplant them later, after any damaged or diseased cells have been removed. This is called an autologous transplant and this is what I had. The process for me, was like this:

1. Tests and examinations – to assess the general level of health.
2. Harvesting – the process of collecting the stem cells to be used in the transplant (It's this part of the process that shows me in the main picture above).
3. Conditioning – treatment with high-dosage TIP chemotherapyto prepare the body for the transplant.
4. Transplanting the stem cells.
5. Recovery.

I would describe this whole process as an extremely intense and challenging experience. For me, I had to stay in hospital for around 3 weeks which included the chemo infusions over the first 5 days, 2 days of rest and then the transplant. In that final 2 weeks following the transplant, it would see my blood counts drop to basically zero (to reset), and then you slowly recover over the next 14 days to the point where I would have enough of a functioning immune sytstem to be able to go home. My treatment plan was 5 cycles in total, and my last 3 cycles all followed that same format. I'm told it can take up to a year or longer for your stem cells to fully recover to the point they can self-generate again, and although I consider myself healthy again now, a whole year on, I know that the effects are still there. I can just tell when excersing now and in particular riding my bike - I just don't have the same power as I had before. I'll get it back though, it'll just take time.

RPLND.

If you remember my story from last year, I mentioned that I might need further surgery to remove lympth nodes from my abdomen. Well, that happened. It took place at SJUH on Wednesday, 3rd August 2022. Retroperitoneal lymph nodes are the nodes at the back of your abdomen. Sometimes these nodes need to be removed after having chemotherapy and that was the case for me. This is called a retroperitoneal lymph node dissection (RPLND). The tumours that existed on these lymph nodes may shrink after having chemotherapy, but they may not disappear completely. After chemotherapy and subsequant scans, if signs show that tumours are still there, then that's when you need to have an RPLND. This is because removing these lymph nodes is the only way to know for sure that those tumours won't again become malignant in the furture.

I don't want to go into this too much and over play it, but RPLND is a major operation. You can read about it here if you want the detail. The operation is done under general anaesthetic and in my case it took around 10 hours. It's still mad to think that I checked into the admissions lounge at 7.00am, went to theatre about 1 hour later, and then woke up again at 11.00pm the next day! The surgeon makes a long cut from the top of your tummy (near your breastbone) to below your belly button. The lymph nodes are in front of the spine. This means your surgeon has to move your bowel and other organs aside to reach them. I thought about adding a photo of what it looks like now, but decided against it. It's basically a 35cm vertical scar down my torso, so not very pretty - but at least it'll be a talking point I guess on the beach this summer!

Recovery.

Recovery from the RPLND for me was 6 days in the ICU at SJUH, followed by another couple of days on a ward, before finally being allowed home. Then further recovery at home for a couple of months to let the wound heal and start to get back to normal function. Sure, there were a couple of complications like there always is, I had an infection in the wound after a couple of weeks which saw me admitted back into hospital for IV anti-biotics. On the whole it was ok, we've gotten pretty used to surgery now in our household over the last few years 😜.

By mid-November 2022, I felt fit and well enough again to get back to work. I love what I do and being able to get back to work for me was so important. Just to get life back to normal again after so many months of disruption, fighting illness and not knowing what lay ahead. I have a great team around me at work and they're all very supportive. After an inital 8 week phase back plan which flew by, I was back to full time hours in January 2023 and pretty much back up to the same pace I operated at before I got sick, so all is going well so far and I'm not looking back.

In terms of next steps for me, I'm now on a 10 year surveillance plan where I have to go back to hospital for screening tests every few months which are designed to look for cancer before symptoms appear. It's all standard stuff and part of the care you receive from the NHS post-cancer in 2023. The NHS and hospital staff at SJUH have always been excellent with me. There have been testing times, but never enough to not be ovecome and I know I owe them my life. Thank you.

Project Ironman.

I'm proud to say that I took part in a clinical trial for a new way to administer TIP chemotheraphy on behalf of Cancer Research UK. Of course it was tough, but I always knew that while going through it, someone else in the future may benefit and that was always enough for me at the time. Now, I'm healthy again, I'd like to go one step further and support the cause by trying my best to raise some money and give back to the charity that funded the treatment that got me better.

'Project Ironman' was something that I conceived during my first diagnosis in 2021. It was essentially what I consider to be my own version of an Ironman Triathlon and my plan was to complete this through 2023 to raise money for Cancer Research UK. If I'm being realistic about this, it's clear that I need time to allow my body to fully recover from the trauma caused by the aggressive nature of the treatment and surgeries that I've undergone in the last 18 months. Having been slowly starting to exercise again, I know myself that my physical capability is not where it used to be pre-cancer. No real surprises there, and for anyone that already knows what an Ironman distance triathlon entails, then you'll probably agree that attempting that back-to-back is not realistic for me physically (let alone mentally) - for this year at least 😉.
Having thought long and hard about this and taken advice from a number of people on what we think is realistic for me physically right now (in April 2023), I've decided that I will be taking on the Cancer Research UK 'IronMay' challenge.

It's not the full Ironman triathlon event that I'd like to complete which will, for now, remain on my bucket list. However, it's still a fair challenge for me right now with where I am physically. Besides, I'll be basically getting off the settee to do this from the start of May, having still done very little real excercise since getting the all clear. I have a sponsorship page which I'll link at the bottom where I hope to collect money for Cancer Research, so please stop by and suppport the cause. Thank you in advance if you decide to do that.

Thank you for reading my story this far...

I hope my insight has been of some help. Cancer treatment is a tough time for sure. Not just on the person going through it, but for all the people in your life that love and care for you. My wife Yvonne, and my daughters, Amy & Mia have been by my side throughout all of this story. Never complaining, accepting the situation as it is and just getting on with what needs to be done. They never signed up for any of this, but yet they got me through it. I'm not really sure how to thank them, but I'll keep trying and doing my best for them. They are my life and always will be.

The harsh truth is, cancer doesn’t end at discharge and your oncologist telling you that you've arrived at remission. Having reflected a lot on that point over the last few months, I think it's something that all patients and ex-patients have to deal with for life. I know that sounds a bit negative, but let me try and explain the foundations of how I try to use that in a positive light in what can often feel like the world’s longest, darkest tunnel. Post-cancer life is like a whirlpool — you feel on top of the world one minute and then if a slight tickle or symptom that resembles cancer pops up, you're knocked back down to the ground very quickly. You're left crumbling with anxiety and fear of the unknown beast who you’ve already defeated. I now know that this is normal, and I'm not alone in that fear.

My post cancer care means I'm part of a 10 year surveillance programme. When I think about that, it makes me realise how serious my situation was. There are times when I feel like I'm living my life looking over my shoulder; but I'll take that to be cancer free and I'll learn to live with it. The expectation when you're given that taste of ‘freedom’ again is huge. At first I felt I had to rise to that becasue I was one of the 'lucky ones'; but as the months have passed, I no longer feel that I do. Instead, I reflect on what I've been through and I feel liberated by that and somewhat empowered. Cancer can be take, take, take - but it's taught me a lot. Though I am a strong advocate for it not ending at discharge, I equally advocate us all preventing it from taking anything else from us. More so, taking what we want from cancer.

Does cancer define me? No. Is it part of my story? Undeniably.
It's not something I'm embarrassed of, shy about or afraid to talk about. There's more to me, more to any of us, than just cancer. But it has an effect on our lives whether we share it publicly or not. While no one single adjective truly defines any of us, having had cancer is now simply part of my story and I'm content to be 'husband', 'dad', 'son', 'brother, 'friend', 'colleague' AND 'cancer survivor' in the story of my life.