Wellness practices?

Hi RedCurlGirl this is a really interesting question that you've raised. Prior to diagnosis I was very fit and healthy, great diet and I exercised regularly, although I was underweight. My anal cancer was caused by the HPV virus.  The only way of knowing if the anal cancer is HPV related is to check what your biopsy results were. Most anal cancers are HPV related, the same applies to  cervical  cancers. There are over 100 strains of the HPV virus and some are cancer causing, a couple of the main ones being HPV 16 and 18.  I had pre-cancerous cells on my cervix about 30 years ago caused by HPV.  The virus lay dormant until it caused my anal cancer in 2019 (HPV 16 was the culprit).  Virtually everyone who has ever had sex has had exposure to HPV, it's just that some people's immune systems don't shake off the virus like other peoples do. 

In 2018, I deliberately lost a bit of weight (stupid as I was already slim). About 4 months later I began to come down with infections like colds which I found hard to shake off. I was diagnosed with cancer shortly afterwards. I believe that I weakened my immune system by being underweight and not eating as much as I should and this allowed the HPV virus to flare up.

Post treatment, I eat a healthy diet but I also include foods I like, such as chocolate and cake and have the odd take out. I also continue to drink alcohol at weekends.  I also take supplements to help with immunity as I think a healthy immune system is important. I take vitamin D3, zinc, and Active Hexose Correlated Compound tablets (AHCC).  A small study in the USA found that taking AHCC cleared HPV from the participant's bodies so I now intend to take this for the rest of my life.  Please note that I am not saying AHCC definitely has a proven benefit, it just reassures me to take it each day.   I think there are ongoing studies into the effect of AHCC (which comes from a certain mushroom) on HPV.  

Exercise also helps with immunity so long as you don't overdo it. I also make sure I get enough sleep, not sleeping enough can put a strain on the immune system.  Personally, I wouldn't worry about eating dessert or drinking wine, you do need to feel you can  treat yourself.  Bev x

Hey Bev,

Thank you so much for your detailed response!  I, too, have always lead a very healthy lifestyle—leaning heavily into veggies, lean chicken and meat, low sugar, regular exercise.  I probably could’ve had better sleep habits, but my bloodwork and physical just 6 months before my first symptoms were perfect.  My general practitioner even told me that an athlete in the 20s would be happy to have my numbers and fitness.

I, too, had a P16 positive biopsy of the primary tumor.  It was a surprise to me—I’d never had an abnormal Pap smear, so I didn’t really know that HPV was an active problem for me.  I had shingles about year before the cancer diagnosis, and shingles is definitely a signal of immune system failure.  One of my oncologists said they often see a cancer diagnosis after shingles…it’s kind of a chicken/egg scenario, though.  It is hard to say if the shingles weakened my immune system, thus allowing cancer to grow, or my immune system was taxed by cancer, thus allowing shingles to pop up. Either way, the shingles came on about 6 months into the pandemic, and I think the stress of, ironically, trying to keep my household healthy, kids in virtual school, etc., probably caused too much strain on my immune system.  So here we are.

It is a relief to hear you regularly enjoy dessert and a drink.  I don’t feel compelled to have it often, but on a special occasion, I like both of those things…then I regret it and feel guilty.  I have heard of AHCC, and my own integrative medicine doctor at MD Anderson mentioned another mushroom derived supplement called Turkey Tail PSK.  I have not elected to take it, though.  She didn’t “recommend” it, per se, for me, because she actually can’t—it’s not regulated here, and they don’t have enough data about dosing, but she says there are promising studies.  She did suggest I eat mushrooms of many varieties and very often, so I do!  I don’t take any supplements except for Vitamin D3, which my medical team did recommend across the board.  It is apparently important for immune health and colorectal health!

I am a mostly-vegetarian, sometimes pescatarian, sometimes vegan.  I don’t remember the last time I had beef, and if someone serves me chicken, I’ll have a few bites, but that has happened fewer than 5 times in the last 10 months.  I’m a Texas native, so it surprises me that I don’t miss meat much at all, but I actually am really finding many ways to embrace the vegetarian lifestyle.

I have made sleep a priority, which I do think helps immensely.  Exercise has been a key part of my life forever, so I have maintained that habit, and I know that’s critical to not only physical health for me, but also mental health.

Again, thank you for your response!

Red

Hi RedCurlGirl, this is going to be interesting to read how others may have changed their lifestyles since cancer. Before I was diagnosed I considered myself okay fit. My husband loves racquet sports, cycling walking and swimming so I would go along and take part but not so seriously. I love walking and swimming and badminton and was a member of ramblers. I have never been overweight and diet wise I usually cook from scratch and eat meat but not much processed foods. I ate chocolate, biscuits and cake. I rarely drank alcohol as I cannot hold it after a glass or two. I’ve never smoked. Never in my wildest dreams did I think I would get cancer. Ten years ago my dad developed liver cancer and rapidly passed away. Mother showed early signs of dementia and that’s when my life turned to hell due to my siblings refusing to accept she needed help. My brother is narcissistic and everyone was scared of him right down to the professional people who was supposed to protect her. I had threats of having my home windows being smashed in all because I felt my mum needed care. She was sectioned eventually as she became aggressive. I would shake, feel sick, my mouth would dry up and not sleep. This went on for four years and social services said they worried about her safety from my brother but would not do anything because they said they didn’t have the resources. Even the police got involved but nothing was done. I truly believe my cancer was caused by stress. Sadly my mum passed away but the stress was gone as I turned my back on my siblings completely.

I take supplements which is vitamin C, vitamin D with K3 and a msm supplement for inflammation of joints. I am at the moment trying to work out a diet to improve bowel issues similar to IBS. I drink decaf and lacto free milk. I have been referred to the hospital dietitian who has suggested going on a Fodmap diet. I’ve not started this but would be very interested if anyone on here has. I do have the occasional cake biscuits ice cream as I feel life wouldn’t be worth living to cut everything out. I am back to walking  around five k a day and do yoga at home occasionally and tia chi. I feel my moods have improved and enjoy life.

My motto, begun during the pandemic and set in stone since my cancer diagnosis, is "i can always move more slowly.' I'm starting to get back to moving more, my starlight yoga and pushing out the distance I can walk, but it's always slllllllooooooowwwwwww.

Hard for me to remember that I ran a marathon 9 years ago. I can barely walk a mile now.

But I'll get it back. At least to a 5K. Even if I walk it. Slowly.

The main things I want to do are: ride my pony; have sex without fear; sit down without wincing and being super careful with my butt.

My sleep habits are finally returning to something more normal, although I've lost my ability to sleep in, sadly. But it's better than waking up at midnight in pain and crying on the couch.

I love my treats. I have some sort of treat in  my epsom salt bath every night. Mmmmm. Ice cream in the tub.

I know, I know. Shouldn't have sugar, especially with cancer.

But that would be a sad, sad life.

;) Suz

Hi ridetbred we absolutely do need our treats!  I made a batch of ginger and tumeric shots at the weekend. They are anti-inflammatory and are supposed to boost the immune system. They're a bit of an acquired taste but I shall persevere.... Bev 

Thank you for responding, Jaycee12!  I am so sorry to hear of the family heartache you endured prior to your diagnosis.  Families are so complicated, and family stress is one of the worst types of stress, for sure.  I hope you’re finding peace now.

Regarding FODMAP, I did try it for a while, before I was diagnosed, when I thought the cancer symptoms were IBS.  I found the FODMAP diet EXTREMELY challenging.  I was hungry all the time and lost weight very quickly.  I know there are people who make it work, but I think I don’t have the culinary skills (or the time, given that I was also cooking non-FODMAP for my husband and the kids).  If it helps your bowel issues, I certainly think it would be worth the effort!  I’d be interested to hear how you progress on that, if you choose to try it!

Best wishes for continued healing!

Red

Hey Suz!

Thanks for responding!  I agree—anything is better than nothing…just keep moving!  So it’s a mile now, but a 5K eventually!  As an ex-marathoner, you certainly have the base fitness, and I bet you’ll continue to improve.

I love your lifestyle “goals.”  Have you been able to ride your horses again?  I rode a lot on our vacation, and I felt great, very comfortable—5 months out of treatment.  Sex is still a little tentative (for both me and hubs), but we’re getting more and more comfortable and adventurous again.  I’ve been using vaginal dilators since treatment ended, and I do think it’s helped.

lce cream in the bathtub sounds decadent!  My favorite sweets category is cake, but ice cream is my second favorite.  Unfortunately, for me, I’ve noticed that if I have sugar too close to bedtime, I don’t sleep well—restless, sweaty, etc.  My desserts either happen earlier in the day, or I just have to prepare myself for a bad night of sleep if I have sweets later in the evening.  But yes, even that’s better than the awful nights right after treatment when I was awaking in pain!  Lately, my preferred treat is fancy coffee…French press in the morning, lattes (decaf sometimes), just a really nice cold brew with half and half…that’s how I like to indulge!

Thank you for the input!

Red

Ok, Bev…I NEED details on ginger and turmeric shots!  Those are both staples in my cooking!  Please share the recipe!

Hi Bev, I to would love the recipe. I did a search online and the costs are astronomical if you wanted to continually take it. 

Hi RedCurlGirl and Jaycee12   they are so very expensive to buy I thought I'd try my own. You peel 2 oranges and 2 lemons and juice them. You then add 2 pieces of ginger,  2 inches each to the juicer (I peeled mine although you can leave the skin on but you must wash it thoroughly). You then add 4 pieces of tumeric, 2 inches each. I couldn't find the fresh tumeric so I used 7 UK teaspoons of tumeric powder instead. This was a bit much for me so I will use less tumeric powder next time.  Whizz them all through the blender.  I found the mixture was quite thick so I also used some from concentrate orange juice and a bit of water. You need to strain the mixture using a sieve and put it in an airtight container in the fridge.  I have a shot (as in a UK double spirit measure) in a morning first thing.  They are only meant to be taken in small doses. You can tinker with the recipe to make it as tasty as possible. You can also add some honey to sweeten if required.   It took me about 15 mins to make them and has saved a lot of money!