Phil Pepper's journey

[PhilPepper]

My name is Phil. My stoma is named Pepper, but I think Pepper is like my hero and I am his sidekick. Must be true, because I keep taking shit from him.

I was diagnosed with bowel cancer a few weeks ago. This is my story. I'm determined to beat this. I think I've caught it in time, I am fairly optimistic and I believe I have the strength to get through it.

I have a lot of family members and friends on this journey with me. Feel free to join me.

[PhilPepper]

My brief intro:

Who is PhilPepper? I am Phil. Pepper is my stoma. I tried to avoid naming it, but it just had to happen.

So after an unexpected diagnosis, a few scans, a few blood tests, and finally a surgical consult, I checked in for my lower bowel resection. That was Thursday and now it's 1:30 am following Tuesday. 

As my title suggest, I could be cancer free since the nice doctor cut it out. However, I guess I have the DNA to always be at risk, and it may have been so advanced that surgery is only the first step in my treatment. The reality is, I am a cancer patient for life and I just had surgery to buy me some time. This doesn't seem to be such a difficult scenario but I am struggling. I can't tell you how much I  just want it gone.

I am hoping for the best. In 12 weeks they will reverse my ileostomy and life will return to almost normal. Followed up by regular and thorough checks.

There are people I want to be here for.

[PhilPepper]

My brief intro extension:

Release from hospital today. Still going through a lot and suffering pain. But that is all surgical related. Apart from having a stoma and bag hanging off the front of me, my suffering hasn't been the result of cancer. It was silently killing me in the background , mostly unnoticed.  I may have experienced all this trauma if I was having my appendix out. So it's kind of like it doesn't count. Like I shouldn't complain. I had cancer, it was cut out and now it's just surgery pain to worry about.

I am still experiencing that voice telling me, don't be soft, harden up, just ignore it. I think it's called Man Disease. I thought Dr Corbett beat that to death with my diagnosis, but obviously not. I think I'm going to be fighting with myself a lot. Being cancer free doesn't mean I'm no longer a cancer patient. I still have a stoma. I still have an upcoming surgery. I still have a major change in lifestyle ahead. I may still need chemo. I may still have early signs of cancer in my lungs. Let's not mention the emotional burden so far and yet to come.

Cancer free, not cancer patient free. It's not hard to reconcile. Cancer patient for life, however long or short it may be. I guess the goal is to reach the highest point where quantity and quality meet; and try to not get hit by the bus before then.

On a lighter note... do you like my profile picture? This is Sally, my nine year old cavalier king Charles. She is Daddy's princess and she has been missing me like crazy. Looking forward to going home for cuddles.

I'm a dog person. Post me photos of your four legged friends.

Au revoir

[PhilPepper]

Brief intro, another extension

My next step is recover from surgery, while waiting for pathology to come back. I will see my surgeon in 4 weeks, but if chemo is needed, I don't know when it is supposed to start. Still a little fuzzy in that area.

Also, in the meantime, is learning how to manage an ostomy bag at home, then at work. It's a crappy situation, but poo jokes are on the rise in my family. Despite being a little pun-gent.

[PhilPepper]

So I found out yesterday arvo that the cancer was in a single solitary piss-ant little lymph node. So it's off to chemo for me. So now I have an appointment with an oncologist later this month. Chemo will start around 6 weeks post surgery. 

I'm not sure exactly when I started thinking this fight would be a cake walk. The news zapped a lot of strength. I've started getting angry at people checking up on me to see how I am. I guess I'm angry.

[PhilPepper]

So... above is all the catch up stuff. Sorry if you find it repeated elsewhere.

Anyhow, the blog is about my journey and I'll just keep adding comments to the blog.

So far, it has been a rollercoaster ride. I don't think it will change much from that perspective.

I tried to lose weight before this whole things started. Now I don't want to lose it but, not easy to keep it on. I managed lose 3kg pretty quickly, just preparing for my colonoscopy. I starting carb loading after that before I went in for surgery. I've seen how hard it can be to regain weight after cancer treatment .

I was 93kg at the start and made it back to 92kg prior to preparing for bowel surgery. Yesterday, I weighed in at 86.5kg. It was only one week after surgery. Still a little above my optimal healthy weight, so not too scared yet.

I am still moving slowly after the surgery and my appetite hasn't returned. I think my stomach has shrunk so probably a good thing, because now I have to manage stoma output and I'm still adjusting to that.

In any case, chemo is coming soon and I suspect I will be losing plenty more weight yet. I've been reading up about exercising during treatment. I hope I can remain active and a healthy weight. I guess that is part of the fight. My mental prepation will be focussing on self-discipline to stay optimistic and motivated; but also to maintain a routine eating pattern ensuring I get the nutrition and energy to achieve adequate exercise .

[PhilPepper]

This is my husky, Bonnie. She is a butt head and a chatter box, but so affectionate and beautiful. I can't go near her at the moment because of my recent surgery. Like I said. She is a butt head.

Dogs are so therapeutic .

[PhilPepper]

I guess I am still coming to grips with being a cancer patient. I'm certainly not feeling like I'm dying and nor am I ready to go down that road. I have accepted the fight and I'm on the fighters road.

With that said, the thoughts of sadness and depression lately is about my quality of life in the next couple of years. Recovering from surgery is a tough gig. Learning to live with a stoma is a tough gig. I know chemo will be a tough gig. Living with the impact on those close to you is a tough gig; perhaps the toughest.

When I feel the need to apologise for having cancer, it all seems terribly wrong. Some people want to be supportive and help. Other's don't get a choice. They don't have cancer but their lives are heavily impacted by it. I feel the need to apologise. I feel as though I need to have strength to help them through it.

I've been told that I need to let go and just let others help me, as it's only for a little while. I get it, but it's hard. Who what's to be a charity case? Who doesn't want to be there to support their loved ones?

Do I have to let it go? Is there a line somewhere in the middle? My loved ones are one of the main reason for fighting.

[PhilPepper]

On a lighter note, my daughter's family come to see me today. My granddaughter was keen to see my guitars. I started playing a tune for her. 

As I stated singing "How I wish, how I wish you were here", she ran over and gave me a big hug over top of my guitar as I played. It was very endearing.

Then she got to sit on Poppy's bike.

[PhilPepper]

My chemo is still a few weeks away, but I'm continuously looking the other people's experiences to find out what to expect.

It seems everyone has some similar experiences but at many different levels. As a guide, it's pretty useless. I guess I’ll find out when I get there, but it is so frustrating. It's not even two since surgery. It's still a little way off so I should over-worry, but I've got all that time for anxiety to build, which is a bit depressing.

I went fishing this morning. Wasn't trying hard to catch fish. It was just nice in the sun with fresh breeze. I strolled the walking track for some. Rejuvenated me a little. It's a beautiful mid winter's day.

[PhilPepper]

So today, I am riding the stoma rollercoaster. Yesterday I had a visit with the community stoma nurse. She was helping me address an issue where I have some irritation on my skin.

If you don't know how this works, I'll fill in some blanks and resist the urge to post a photo. I had an ileostomy while means my small intestine protrudes from my abdomen, known as a stoma. Stick a bag on the end to catch the crap. As the waste is highly acidic, it irritates normal skin.

In a perfect world,  a stoma is nicely rounded or round-ish and easy to cut to fit the sealing products around. My stoma is more like a figure eight shape, so a little more difficult to shape for and it's been shrinking since surgery day.

So with the nurse making some recommendations for how to handle the preparation better, it went well through the night, but failed the next morning. By failure, I mean the bag started leaking. First time, so a natural panic.

I spent some time assessing where and why it failed. I tried doing everything carefully to get it right. Took me ages. I was happy with the result, but 1/2 hour later, I sprung another leak. 

This is shaking my confidence. I may have this for the next 12 months. I don't know how I would handle this if it happened at work.

I have managed to get a non-leak bag fitted this afternoon,  but back to square one. I can feel pain at the base of my stoma, meaning the irritated indent of my figure eight has suffered some leakage and is being eaten away by my highly acidic poo. Talk about a crappy situation.

[PhilPepper]

Weird dream.

Before I delve into this, I am going to talk about the hallucinations while in recovery, post surgery. It was my first surgery so I didn't know what to expect. For me it was kind of like having a different reality. I kept getting all these problems which I needed to solve, which seemed realistic and real world issues. However, I tried to work out what the purpose was, what business benefit could be achieved, what was the practical application. This made it all seem irrational and I'd wake up, but it didn't feel like waking from a dream. It felt like switching into an alternative reality, where I was in hospital. When I'd drift off again, I went back to that alternative reality and start trying to solve more problems.

The pattern continued and I was getting really frustrated with having to work on frivolous problems which had no bearing on real life. It frustrated me to the point where I realised I was in a dream state, even though it seemed so real. I was able to force myself awake on demand while still dreaming. Even stranger, while I was awake, I could close my eyes and reenter the dream reality at the same point I left off. But it was so amazing, it didn't feel like my imagination or a dream, it was like switching realities.

The other weird thing was the people who's faces morphed into monstrous, demonic faces. Some of them, their whole faces and others only parts of their faces. When I spoke to my ex-wife on the phone, she asked me about my hallucinations and I mentioned the faces. I obviously said something that resonated with her. I asked another friend about his experience after surgery and he said he was on a white endless plane, while there were shiny silver spikes rising up out of the plane. The hallucinations are so weird.

Anyhow, the dream last night was weird. One of the faces that morphed during my hallucinations, was in my dream. He was my surgeon. I was happily just going along with the process of getting prepared for surgery, when the surgeon showed me some human organs. He told me they were my new liver and stomach to be transplanted. After a little while I thought to question why I was having organ transplants. Had my cancer spread to my liver? I thought I was having my bowel operated on? Since when do they transplant stomachs? My friend recently had his stomach removed and he is doing fine without it. Things were really starting to seem wrong and I started protesting but the medical staff didn't care. I told them I didn't want to proceed but they said I had already signed the paperwork so I couldn't back out. They put me under and I woke up from the dream. 

Freaked me out. Kind of like Monty Python. They came for my liver because I'd signed the donor card. What strikes me as interesting was the similarities between the hallucination and last night's dream. I was going along with it until things just didn't make sense and I started to question what was going on. I knew things weren't right. It led to waking up in protest because things seemed absurd.

[PhilPepper]

Enough weirdness. Time for puppies.

This is my Charlie boy. He is a bit a farm dog mix, but most part Kelpie, if his bark and folded ears don't give it away. He is mostly albino, with black and white being his only pigments.

He is a cutie pie. Quite smart, but kind of too smart to the point of stupidity. I'm sure there are a few dog owners who know what I mean.

Anyhow, dogs are great therapy .

[PhilPepper]

So tomorrow I meet the Oncologist for the first time. Almost 4 weeks post surgery. It seemed so far away and now it's upon us. 

My wife and I have put together a big list of questions. I've been told many stories, some positive and some negative. Some positive, but told in a way that makes me think negatively, but I don't want to get into that. Needless to say, I probably won't get all the answers I want. I'll only find out as I travel down recovery road.

We were planning a cruise with a group of friends. That's been cancelled. We going on the Camp Quality Escarpade in October. I've just withdrawn from that. I've had to withdraw from competition in the ACT Rally Series for the rest of the year and probably will miss next year's series. I was invited to compete in the last WRC at Coffs Harbour this year. Also withdrawn from that.

Now I'm looking at the day to day things I need to give up. All the life style changes I have to deal with to get through chemo. Living with a stoma is already a major shake up. Most importantly,  I need to keep working. I don't know how my career will be negatively impacted. (I know! I have cancer! That doesn't mean I'm giving up my career. I'm intending to retire as an old man, with lots of living in the meantime.)

Some days I feel so beaten and I am yet to start chemo. I'm sure that part of the problem is having a lot of questions and no answers. Hopefully, after meeting the Oncologist,  we will have some answers. Even if I get bad news, I think I'll deal with it better than no news.

[PhilPepper]

This post is a bit late. Catching up with the gravity of starting chemo.

As the Oncologist appointment got closer and closer, I got more active on this site. I think it was anxiety. But since the visit with the Oncologist , I've also had a visit with the chemo unit and my surgeon. What's the prognosis???

3 months chemo, starting next Wednesday. Two types, injected through a canulas and some tablets. There are 4 cycles. Each cycle is 3 weeks long.

The good news, 3 months is easier to recover from than a 6 month treatment. It's being moved forward, just short of 5 weeks post surgery. Ileostomy reversal is scheduled for early December.  It looks like I'll be starting 2020, in good health, cancer free and with a renewed outlook on life.

Bad news... chemo starts sooner and I am feeling just a tiny bit scared. It's been making some dents in my positive, happy go lucky attitude to beating this wretched disease. Took the wind out of my sails, so I've delayed posting about it.

I think the difficulty dealing with chemo is my mental blocker to consuming toxins that will damage me. I know! I know ! It also kills cancer. I have a mental blocker to taking drugs in general. Chemo is a whole new level. 

I don't even want to talk about it anymore. I'll leave it there. Change the subject. I found my daughter walking Bonnie this afternoon. I saved them some energy and drove them home.

Pretty girl... Bonnie

[PhilPepper]

And these are my special girls... Lucy and Sally.

Spoiled much?

[Budgie]

You have a wonderful dog family. 😊

Animals bring such joy  & comfort to our lives.  Unfortunately, I am without any furry friends now as they have all aged & passed away.   You are lucky to have them.  We used to have a malamute who was such a gorgeous character.   He would definitely let you know when he was unimpressed with you.  There was a time when I was unwell, & he wasn't taken for his daily walk;  the following morning, he had pulled a green tomato off a vine & left it in the patio doorway.  He did this every morning until his next walk.  Very cheeky boy!  I miss his attitude.

I hope you're feeling well today?

Budgie

[PhilPepper]

I'm disappointed that I can't go on the Camp Quality Escarpade this year. Chemotherapy is my priority.  It was strange when I first got involved with Camp Quality. It wasn't because I'd had personal experience with cancer. It was because I had an old car being consumed by my garden which I wanted to put to use. So we found Camp Quality Escarpade online and started to get involved . 

For those who don't know, Escarpade is basically a bush bash, raising money for charity. 

So, we started a team called Running On Empty. I mentioned it to a friend in a shop one day and he asked why I was interested in Camp Quality. Turned out his son was on the receiving end of Camp Quality, so I invited him to join the team.

Unfortunately, my big old Statesman wasn't being restored quick enough, so I bought a Kingswood, affectionately known as Woody. So we've been out fundraising for a number of years, supporting children affected by cancer.

The irony here is I didn't have cancer, and at the start, I really didn't know people who had cancer. On one Escarpade trip, I was talking with a guy who son had been a recipient of Camp Quality support, twice. The good news was his son was also involved that year driving his own car. The family was obviously giving back to the charity that supported them during tough times. However, they remarked on how amazing it was for someone like me, with no experience with cancer, could be driven to get involved with Camp Quality Escarpade . I was surprised to see the different perspective .

Now perspectives are quite different. Now I'm a cancer patient. I don't look at Escarpade through the same eyes. Goes for a lot of things actually. But now, maybe the Cancer Council will accept me in the Shitbox Rally since I have a personal link to cancer.

[PhilPepper]

What is worse than having cancer? I think I know now. Discovering when someone you really care about has cancer.

[PhilPepper]

So... oxalyplatin is my first poison. Let me just say. Chemo sucks balls.

Symptoms are exactly what was described. The pain in my left arm from the cannula infusion. Am I using that term correctly? I thought pain was centred around my tattoo, but then also where I've had previous injections. Then I thought it was my veins. I can't tell anymore. It kind of burns, but aches too. My left arm was recommended because I'm right handed. It was a good recommendation.

Cold on my fingertips, the tingling. Not natural. I can handle it when I'm not really doing anything, but when I tried to make myself a sandwich, getting things out of the fridge was hard. The knife I used to spread butter felt like it came from the freezer. The worst part was touching the chicken. When I first picked it up, it felt like it was biting my fingers, to the point it gave me a fright and I let go. I persisted and it got worse. I eventually had to run my fingers under hot water, but I'm not sure if I'll be able to tell if it actually burns me either.

What started out as light tingling, progressed to sharp cold tingling up my fingers to my first knuckle. Eventually feeling like my fingers were in a cold vice. Not crushing my fingers, but tight enough that I couldn't free them.

Just after leaving the hospital, on the way to the car, the cool Canberra air was noticeable straight away. My tongue was feeling swollen and taking a breath through my mouth was like breathing air off the snow. Geniene joked that in Canberra, we do breath air off the snow. She's not half wrong. When I breathed through my nose all my airways chilled and my nose was starting to run. Even to the point where I would blink my eyes and the moisture around my eyes was cold and started forming cold tears. The tingling in my fingers spread to my face. It was like walking through a cold sleet.

Best thing was the lack of nausea. They said everything was handled well on the nausea front and they were not wrong. No I'll feelings to complain about. Touch wood.

After getting home, I made my sandwich. It was close to five o'clock. Gen had to login and do some work remotely. I didn't want to disturb her. I had my sandwich and went to the bedroom. I got into bed to warm up. I wasn't tired at all, but Gen woke me an hour later. I don't think the sleep was a side effect. I've been crashing physically in the afternoons since surgery. However, and this is unusual, I awoke feeling well rested.

So... Gen cooked shepherd's pie for dinner and added some psyllium husks. My new dietary standard. I prepared my Capecitabine, my second poison, my oral chemo, which I am taking for the next fourteen days. I have a mental blocker to taking a lot of pills and there are five I need to take, just for the chemo. It doesn't help that the nurses were surprised to see my dosage was so high. Freaked me out a little.

Halfway through dinner, I took three tablets and hit a wall. I had to do a little mental preparation before I could continue. I felt like throwing them across the room. Nonetheless, I convinced myself to finish them. Then I finished dinner. I don't know how long before these symptoms kick in. I started getting some unexpected body pains, most notably in my calves and shoulders. I don't know if it's related.

Now for the yucky part. Sorry. Block your ears if you don't want to read it. The psyllium husks are doing a good job of making my poo gluggy. It is reducing the high flow of liquid through my stoma, but doesn't seem to slow down the passage of food or increase digestion, which I was told it would. However, I went to the bathroom earlier to empty my bag. The psyllium husks had worked, but there was still a lot of free fluid as well. This is a problem for the skin around my stoma. It may be just from being well hydrated with saline this afternoon, but they did warn me that diarrhea could be a major issue as a side effect. Too early to tell yet but I just took two Gastrostop in response.

Putting that subject done for now...

Another weird thing is pain in my jaw. If I chew on the left side, incredible pain in my jaw joint on that side. Chew on the other side and the same thing happens on the right side. But when it subsides, I can eat fine. However, have a break and try eating later, then we have to go through it all again.

Oh! And drinking cold water. Drinking razor blades was an accurate description. I couldn't form a mental image of it before, but now I know.

Last thing I'll mention. The mental burden. I've had a strong apprehension towards chemo. Yes, it's medicine to kill cancer, but it's also a poison. It kills healthy cells too. I have struggled to be positive and I know I need to be. I can't turn off the anxiety. I mentioned earlier about the tablets and my reluctance to finish a course. Well in the morning, the are more tablets to take.

I described to Gen how I went sky diving when I was 17. I really wanted to do it, despite my fear. And despite my fear, I had too much pride to chicken out in front of all the other guys... and cute chicks. So there was no way I was backing out. My fear was like a little person inside of me, trying all sorts of techniques to make me back out, but I ignored it. I was last in the plane, so I was first out. It was a small plane. I had to put my foot out on the step, grab the wing strut and shimmy along to the end of the strut. When the instructor signalled me to go, that little man inside took over and froze my fingers. I had to mentally pry my own fingers from the strut. It was worth it.

That little man has returned only twice more in my life. This is the second return. He didn't want me to have chemo. He doesn't want me to take tablets. It is like he is having a full on temper tantrum inside me. I don't want to let this guy out. My biggest battle with cancer seems to be with myself.

Just before going to bed, I'm noticing my hands trembling if I pick up a glass of water. It's not heavily or cold. I've noticed it a couple of times.

So I am playing safe to start with. Taking it easy, staying warm and drinking warm water. I'll work from home tomorrow. Try to keep active but not overdo it. I'll try to find where my boundaries are. So far, I'm not one of those people who breeze through it easily. It seems to be text book chemo, with all the predicted side effects.

One final update. Went to bed with a little nausea. I took no medical action immediately, just played by ear. Prepared the vomit bags, left a light on for quick access to the bathroom, warned the wife. Ended up with some reflux. It may not be chemo related, i'd get this normally which is why I take nexium. Usually a big rich dinner would set me off, but I was conservative with eating tonight. So chemo, may have helped it along. Watch this space. In any case, I took some antacid tablets, chewed them up, and the jaw pain was gone. Sweet!

[PhilPepper]

I didn't plan to. I've started growing a cancer beard. I also was trying to get my haircut before surgery. Never got around to it. This beard is tracking the span of my cancer treatment. I am starting to look like I belong in a 70's band, maybe the eagles. And this is an older photo.

I'm planning to grow my beard until chemo is done. Finishes in time to start Movember. I've start a team profile called Running On Empty. That's also my Camp Quality team name. And my ShitBox rally team name. (Cancer Council! Are you hering this? I want a spot in next years ShitBox. I think I qualify now.) So if anyone thinks they can grow a half decent mostash while on chemo, I throw down the gauntlet.

One of the main things I'm trying to do with my Movember team is raise awareness for bowel cancer. It is not one of Movember's main target areas, but I guess I have my own reasons for bucking the trends. So I have a goal. Through spreading the message about men's health, I plan to spread the message about bowel cancel. So I am looking for mo-bros and mo-sisters to join my team, who will spread the word, "Go get a colonoscopy". I want to tally the number of colonoscopies the team can inspire. Then next year, try to beat it. I'm not so worried about raising money. To me the message is more important. But the message is for men and women. Men just need more convincing.

Reach out to me if you want to get involved with my Movember team this year. Mo-sisters are most welcome.