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Pseudomyxoma Survivor

recurrence after 2 years

Petrolhead276 profile image
7 Replies

so I had my CRS/HIPEC operation on 21-Feb-2022 and was classed as CC1 after the op.

I know it’s a 37% chance of reoccurrence but was still disappointed to be told this week that I have a recurrence of PMP in my abdomen, part of which has created a lump in the lower left side where the cancer cells have burrowed into the muscle of the abdomen wall.

regardless it’s 6 monthly CT scans and CEA blood tests to keep an eye on rate of this reoccurrence.

I need to get fitter and shed some weight, the latter having been an issue for a few decades 😂

any suggestions re healthy eating for pseudomyxoma survivors would be welcome.

To all survivors of this disease

“Onwards and upwards”.

dave

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Petrolhead276
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7 Replies
DanceFixesAll profile image
DanceFixesAll

Hi Dave. So sorry to hear about your recurrence.

I've found that I definitely need to think about a combination of food and being active to remain healthy. I try as far as possible to avoid heavily processed foods such as pasties, battered fish etc. and stop eating by 7pm. It's tricky, but it has a material impact.

I also make sure I walk at least 250 steps every hour (I have a watch that reminds me!) and go up and down my stairs quite a lot. Something that I'm not quite so good at, but I know helps a lot, is walking short journeys instead of using my car.

I've not suggested anything revolutionary, but they are relatively small things that seem to work for me.

Good luck and best wishes!

Petrolhead276 profile image
Petrolhead276 in reply to DanceFixesAll

Thanks DFA,

Good ideas and reminders of what foods to avoid. Although I do like a good fish and chips, occasionally.

I use Pacer to check my walked steps/distances.

Yesterday was a good day, just over am1 mile walking round Costco,s (it helps going up and as many aisles as possible 😂 and that another 1.08 miles cutting the rear garden grass with the lawnmower, having a large rear garden (100x30 feet) is a bonus occasionally. So without trying I get 2+ miles of walking plus a few bending and stretching emptying the grass catcher and reaching for shopping items.

Cheers Dave

Pepperlady profile image
Pepperlady in reply to DanceFixesAll

That all sounds very useful. I had the hipec surgery in December and hoping for the best. Can I ask more details about the watch, is it one of those you can get with Samsung or Apple, or can I get any one from Amazon or somewhere? Many thanks for posting

DanceFixesAll profile image
DanceFixesAll in reply to Pepperlady

There are lots of watch options out there now, so you could definitely go to Amazon rather than Samsung or Apple. I have a FitBit and that seems to work for me. If you need a bit of help choosing one, the quiz below seems quite useful.

Good luck PepperLady. I wish you a swift recovery!

choiceschoices.com/quiz/fit...

MaryAppendixCancer profile image
MaryAppendixCancer in reply to DanceFixesAll

I have a Fitbit Versa 3 and it works well for me too to track sleep, steps, distance, heart rate active zones and calories expended. It doesn’t track calories ingested! I don’t want anything to complicated!

Pepperlady profile image
Pepperlady

Thanks for that I'm a bit of a technophobe, so I'll have a go at that when I've got my brain turned on. Fitbits seem pricy but maybe I'll get lucky. I had a go at the quiz but it went wrong somewhere! But it seems like a good tool.Regarding diet I'm doing similar things to Dances FixesAll and also cutting out seed oils (rapeseed, sunflower), and trying to eat more unprocessed food (fruit, nuts, oats). I still have the processed stuff in small amounts though (bread, diabetic chocolate.)

Happy Easter everyone.

MaryAppendixCancer profile image
MaryAppendixCancer in reply to Pepperlady

Yes with Fitbit it’s worth watching for a deal. No need either to buy the latest and greatest geared for athletes for basic tracking of certain metrics!

Good luck.

I’m also working on my diet - chemo and surgeries have totally messed up my eating habits and discipline. Menopause doesn’t help.

From not feeling hungry a lot during chemo/immunotherapy and forcing myself to eat whatever I could (preferably healthy) when I could and dropping weight, so consciously trying to build it up.

To losing heaps of weight from HIPEC to again eating (albeit healthily) to gain weight and avoid sliding into anorexia.

Now I’ve put on too much! Depressing, but a very small price to pay in the whole scheme of things.

Portion control and disciplined input of calories being less than output (by simply existing plus extra movement) is my plan. I’m seeing a registered dietician later this month to help look at my goals and help with healthy choices.

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