Complaints about the little things

[PhilPepper]

Hi Sch

I hope you are doing well. I've been bugging other people for the meanings behind their names. What is behind sch?

I'll give you an update on my morning routine as of today. Yesterday was a shocker. Any suggestions? I'm all ears.

I've started with lemonade flavoured hydralite. The least ghastly flavoured of all, until you mix warm water into it. Then, it is just as bad. Wash down a maxolon and Gastrostop to settle my tummy before I get into my Capecitabine, because I don't need that coming back up or making  mad dash for the ileostomy bag.

I have poured some cornflakes to have with hot milk and usually add some psyllium husks to help slow down digestion. The dry cornflakes are actually sitting next to me now and I can't help grazing. They taste better than hydrolite with warm water. They are also helping to settle the nausea a bit too.

My wife just told me that grazing on my dry cornflakes is the sort of thing that all pregnant women do for nausea; and I should know that! Hmmm. 

I'll take the Capecitabine midway through my cornflakes (with warm milk, if I save myself any cornflakes). I have to have it mid-meal with a full glass of water. With low appetite, getting these tablets in is a challenge. Despite the mental barrier I have for taking them in first place, nausea is a bigger barrier.

Hopefully that will start my day well. Hopefully I will get through this one easier. Scary part is... Yesterday could have been much worse. Any general tips you can suggest would be great. I'm keen to stay a functional human being throughout the chemo.

Cheers

Phil

[sch]

Hi Phil,

The name I've chosen is a little mundane. It's the initials of my name.

My name is Sean, and I have chosen to obscure my real name for the sake of privacy in the context of the broader internet.

Hot milk on ceral is a great idea. That reminds me of my travels to India. 

What are the psyllium hosts for? I haven't heard of using these before.

As for tips on getting through this;

• Set a routine of walking (or running) as much as you can fit in to a daily routine. This will help with nausea, appetite, neuropathy and just generally boost your mood.  I know this can be difficult after surgery. I started walking 4 km a day, a couple of weeks after my colectomy. I was sore and slow. I also found that it helped with anxiety.
• I found that my taste buds were altered by surgery. Things that I liked before I didn't like any more. Things I didn't like before, I really love now. Strange yes? Try different foods that you might not have liked before and see if you like them now. That might help.
• I don't know if you are intending on working while you complete your chemo. When I first started chemo, I was going straight back to work after I had chemo (with my 5FU in the bag). Three months in and the fatigue hit big time. I wasn't able to head back to work that day. I would go home and sleep for the rest of the day.
• The nausea can be pretty tough. If you are feeling nauseas, tell your doctors. The doctor changed my anti-nausea tablets to something stronger. That made such a difference.
• If you are not coping or struggling with some aspect of your treatment, tell your doctor. They can make changes or alter doses of drugs. It's really very important that you communicate with your doctor.

-s

[Wyandra]

Hi. Life is made up of little things, and when I started chemo this week for stage 3 bowel cancer, I realised I took so much for granted. Some days I don't want to go for a walk, but force myself. Just looking at people and how well they are - just like I used to be - makes me upset. My chemo is for 6 months so I have a long way to go. God bless you.

[PhilPepper]

Hi Wyandra 

First week. You are in for a journey. Are you on Capecitabine and Oxaliplatin?

I found the Oxaliplatin to knock me around harshly. The initial side effects hit fast and hard, but overall the first couple of days were bearable. The first cycle was hardest hitting on the fatigue side effect. My cycle started on Wednesday afternoon, Saturday morning I was full of energy and ready to go out, then around lunchtime it hit me. I can't describe it as want or don't want. I just couldn't, slept for the most part of 3 days before bouncing back. By that time, the Capecitabine was challenging me to start hydrated.

The Capecitabine was particularly tough on me. I didn't think I needed to call for help in the first cycle, but 20/20 hind sight is clearer. The next 3 cycles put me in hospital and were aborted early. I'm a rare case, not being about to handle the Capecitabine properly.

One of the most important things is to stay positive. I failed at this at the start of each cycle, but overall toughed it out. Strangely enough,  when I reached the end of my last cycle, I thought I'd be happy, but it was a real anticlimactic experience. I felt more depressed and worn down.

These days I'm coping with my stoma reversal. Life with a shortened colon has it's own challenges. I feel like they left some details out of the brochure. It seems like life just changes after being diagnosed. Some normality has returned, but normal seems to reinvent itself often throughout a cancer journey. I guess that is something I can be certain of. Also that cancer sucks. And I'm very certain that chemo suck balls!

Hang in there. It will be tough and the end seems so far away at the beginning. On the upside, it is concerning that the years go faster as I get older. We'll this year has bucked the trend. This year, being 47, is the longest year I've experienced. It's taken the longest 10 months of my life so far. I may not live longer but it certainly feels like it.

Cheers

Phil

[Wyandra]

Hi Phil

i also have stage 3 bowel cancer with only 2 lymph nodes removed. I think I was very fortunate. Have had my 3rd infusion of Folfox and 9 to go. Just watch your body temps. I had extra 2 days in hospital with fever and low blood pressure. I'm on blood thinners which cause blood cells to drop as well. But I'm not feeling too bad. When I read what others are going through I thank God mine is manageable.

White blood cell levels dropped in my case.

take care.

[Wyandra]

I think it makes a difference depending on your age.
I'm 69 and thankfully retired.

[BruceC]

Hi

Lots go on in our heads for sure and good to let it out here where there are many emotions going around.

It’s definitely you not you wife feeling that way for sure so make it up during the day and don’t overthink it.

We all need reassurance and comfort so nothing wrong in feeling  it’s petty as it’s not to you.

cheers

[suz123]

Hey Phil, I am new to all this but your post jumped at me cos I have stage 4 Bowel cancer and am going through chemo now.  But my biggest bitch of all is I can't ever sleep on my side again! Whinge whinge. I have to sleep in an adjustable bed and have to sleep almost sitting up as I have a stoma bag that leaks like crazy if I sleep on either side. I miss curling up so badly! Sometimes my body aches to sleep on my side I just do it and damn the consequences lol. Thank goodness when they gave me my stoma bag I was given a great sense of humour with it. You have to laugh about it all.

As to the chemo I wear a new fashion accessory which is a lil bottle, containing the chemo in a shoulder bag that I tote around for 2 days. This is my first course and I can honestly say I am having no side effects at all, touch wood. I know I am not going to lose my hair but it might go curly. Guess what I have always wanted curly hair. 

I am a 67 year old female and live in an aged care facility. Now that has a lot of things to complain about but all in all I love it here. About complaining, complain hun, you deserve to when you need and a problem shared is a problem halved. I am currently writing a six paged letter to the minister for aged care. I have become a placard carrying pensioner lol!

I wish you all the best on your cancer journey and I hope you have a good outcome but a positive mind and outlook helps a great deal. Find your humour where you can  oh and I hate to tell you this, they do just shove all your innards back as they can, it takes time to get it all to feel natural again.

Good luck and the best of wishes, Suz123.

[PhilPepper]

Hi Suz

It's a long time since I started this post. A lot has happened.  I am post chemo, post stoma reversal and post my 12 month colonoscopy (despite Covid19 delaying it by 3 months).

I have distant memories of my stoma. Post stoma brings on it's own issue and has you wanting it back. It makes you quickly forget about the issues of stomas. However,  when I reach into the vault, it all comes back. Leakage was my biggest fear. I had about 2 to 3 hours sleep between bag alarms. 

I struggled a lot at the start because I had trouble getting a seal around the stoma. It took a long time to work out what worked for me. After I cracked that, it all got better, but my main concern then become controlling diet which was also tricky with the chemo. If the bag filled up with fluid or gas, that was high risk leak situation. It's like a high pressure balloon.

I ended up finding a good ring seal. I had to order a large one and cut it to size. I could wrap it closely around my stoma which was a figure 8 shape. It really cut down on my leaks.

In the meantime, I'm cancer free and things are improving generally. Tests are continuing and hopefully they won't find anything in the future. 

Good luck with your stoma care. I hope you get some better sleep.

cheers

Phil