2 YEARS!!!!!!!!!!!!!!!!!!!!!!!!!! WHOO HOO!!!!!!!

I seriously CANNOT believe it!  2 YEARS today since my surgery!  2 years since I became stomachless!!  2 years ago today I could not imagine what my life would be like in 2 years time.  Surprisingly......it is normal.  Simply normal. 

My thoughts during the first few days of recovery were 'How am I going to get through this?', 'Will I ever feel hungry?', 'How skinny am I gonna get!?!??', 'Will I ever eat ice cream and chocolate again!!?".

Well, these are the answers: 
1.  Yes I did get through it and found some AMAZING stomachless friends through Facebook and the No Stomach For Cancer website. 
2.  Nope, I never get hungry.  BUT, I do get a weird air bubble feeling that rises from my gut up into my throat and that reminds me to eat.  So I'm calling this my 'new' hungry feeling.
3.  I'm pretty skinny.  Size 8 (Australian Standard) or a size 6 (depends on the brand of clothing).  I'm about 5 kgs under my normal weight.  I look OK, not entirely happy with my appearance but at least I'm alive!!!
4.  YES, YES, YES I can eat ice cream and chocolate!!!!!!  My favourite dessert treat at the moment is a waffle cone with cookies and cream ice cream, YUM!!!!  I eat about 300 grams of chocolate a week (about a normal Cadbury family size block of chocolate), a few pieces here and there throughout each day is enough :-)

Life is busy.  I work part time.  I am now part of the daily school pickup and drop off.  I eat out at restaurants and love it!  I still feel tired but am used to it now (part of that is my own fault because I stay up WAY too late at night!).  I do find though that since my surgery I find it hard to get to sleep.....maybe because I eat a small meal late at night and my body needs the time to digest it before I go to sleep??  Who knows! 

Photo of me 2 years post TG:

There's not really much to report on regarding my new gastric system.  I do occassionally get some pain in my bowel/intestines, usually because I've over done it with too much food or have eaten the wrong thing....too much sugar or too many carbs.  I still focus alot on maintaining a high calorie diet as I really want to gain some more weight but my weight has stabilised now for so long I doubt that I'll ever get fatter.....

Multi vitamins and an iron tablet are a daily occurrence and a B12 injection every 8 weeks gives me that little extra energy boost. 

I still have my yearly breast screening done.  My last screening showed a benign lesion in my right breast. 2 biopsies were done (one under MRI) and a 'marker' was put in (so in future they can see exactly where the lesion is when I have my yearly ultrasound, mammogram and MRI).  I'm starting to think a double mascetomy and a new set of size C or D cups would ease my mind and reduce my 40 something % risk of developing Lobular Breast Cancer to 0% risk!  Next breastscreening appointment in April, I'm going to discuss my options with the Doctor.  I'm already missing a body part.....another 2 won't matter!!  As long as those 2 get replaced!!  The stomach I can live without :-)

My guts (geez I need a tan)!!  Scars are hardly noticeable now :-)

Not really much more to report on.  Just getting on with life!  Grateful everyday that I am alive and that I made the right decision to have a Prophylactic Total Gastrectomy.  Life really is pretty normal, I love food again, I would like to be able to drink more alcohol (more than 1 glass!), I am enjoying every moment watching my boys grow (and eat everything in the house!!) seriously how much can a 5 year old and 3 & 1/2 year old eat!!  I spend alot of time buying food and it's definitley not me that eats it all (except for the chocolate and ice cream!!).

If you are embarking on a similar journey or are already on it, please visit 'Support Group for Partial and Total Gastrectomy Patients' on Facebook, a stress free page with loads of information, positivity and discussion :-)

17 months post PTG.

Feeling fantastic!!!  Normal........finally!!  Besides feeling a little tired every now and then I feel very normal.  Once I hit 14 months post Prophylactic Total Gastrectomy things just got better and better.  I have gained approx. 2 kgs!  Yay!!  I eat pretty much anything and everything, I could do with eating more fruit but can only seem to manage a banana a day, will put fruit on my list of foods I need to eat more of.  Once summer comes around there will be more variety of fruit so it will be on my 'To Eat' list!

Sausages and steak I still struggle with, but I tend to stay away from them now and have them on my 'Occassionally Eat' list.

'Frequently Eat' list would be all the bad things like chocolate, ice cream, lots of carbs - biscuits, cakes, muffins......., cheese, lots of pasta....... yep all the bad stuff.  But it has helped me gain some weight!  Will have to get my cholesterol checked next Doctor's appointment!

I decided not to go ahead with the endoscopy and dilatation, I no longer have pain in my oesophagus.  I think it was just a once off occurrence.  I am meeting with the my surgeon next week for a follow up appointment/review, I will be telling them that I'm not coming back in to see them until early next year, I really don't see any point now that I'm gaining weight and feeling normal!

Goals for the next 6-9 months: 
1.  Try to gain another 3-5 kgs.
2.  Attempt to do some exercise.....
3.  Put more fruit on my 'Frequently Eat' list.
4.  Try to drink more than one glass of alcohol without feeling drunk, lol!!

That's about it really!  Feeling great, positive, happy with my life, glad that the 'worst part' of PTG is over and looking forward to living a long and healthy stomach less life ;-)

12 months!!!!!!

I did it!  I made it, 12 months post PTG.  When I left the hospital on day 8 after surgery I remember thinking it's going to be a long 12 months, I doubted myself greatly that I could get through it and everyday felt like it was a battle I was never going to win.  But it seems the closer I got to 12 months the easier everything seemed to get, the vomiting daily (and not just once, sometimes 4 or 5 times a day) disappeared around the 7 month post surgery mark.  It does still occasionally happen but only because I eat too fast and don't give myself enough time to let the first few mouthfuls digest.

The weight loss is a battle I'm still fighting and am still losing some weight due to an issue with my oesophagus.  I have twice had some pain in a certain spot in my oesophagus due to a nurofen tablet getting stuck and then a few months later some lamb chop getting stuck causing me about a week of an uncomfortable sharp pain in my oesophagus when I eat or drink.  Mylanta helps reduce the pain.  I have been back to see the surgeon (I saw one of his team) and they are going to investigate with an x-ray Barium Swallow, to check that the pathway is clear into my guts...lol.  I really don't know what to call my new digestive system, so I think guts will do.

By 10 months post surgery I successfully ate a whole take away burger!  Whether it be McDonald's, KFC etc....  It was such an achievement and gave me a sense of normality!  I can even eat a small handful of fries with that burger while sipping on a drink in between mouthfuls!  Another achievement, drinking with a meal! 
Now I pretty much eat whatever I want, am concentrating on high carbs, high protein foods for weight gain.  I do struggle with maintaining a diet of nutritional food that has lots of variety (I'm constantly searching for new things to eat), I really need an in house chef who can cook me my meals and prepare my snacks everyday! 

Unfortunately I have developed Coccydynia (Tailbone Pain), due to losing all my fat padding on my butt, basically when I sit down now I'm sitting straight on my tailbone.  I had an x-ray to rule out anything else ie:  abnormal masses (tumours) or abscesses.  The report didn't indicate anything so I'm guessing it is fine, my Doctor will confirm next week when he has a look at the x-ray. 

Emotionally though, it has been difficult.  Losing 20 kgs so quickly has been the toughest along with grieving the loss of an organ (sounds strange but it is something I never imagined would happen).  It's not only the feeling and knowing that my stomach is gone but the feeling that my life has changed and that it will never be like it was before, a loss that I am still try to get a grip of.  My self esteem has suffered ALOT.   I will unlikely be overweight ever again, but will forever be trying to gain weight.  I will never feel hungry again, but will have this weird airy feeling in my guts that reminds me to eat.  They seem like little things but for those who are gastric enabled (those who still have their stomachs firmly attached to their digestive system) it is something you will probably never understand.

I have found new friendships, strangers whom I have never met but communicate frequently with, who are going through or about to go through having their stomachs removed.  It has been very comforting knowing that I can compare my experiences with them! 
I did read recently that post surgery a patient who has had a PTG (Prophylactic Total Gastrectomy) can develop morbidity.  When I hear the word morbid I think of death.  I looked up what morbidity means and found that it means 'gloominess' or 'gloomy'.  I can't remember the exact definition but I clearly remember the word gloomy.  Am I gloomy?  I must admit yes, sometimes I feel gloomy.  I feel the most gloomy when I think about the loss of contact with some friends since my surgery whom I have barely heard from, maybe I appear gloomy to them or they just don't know what to say???  I know people get busy and life just takes over and time slips away....... 
Or the lack of emotional support that I would expect from some people in my life, maybe they just don't understand and never will.....

I find myself envious of people who have a nice healthy weight and find that I constantly search for people in the crowds when I am out and about who are as skinny as I am and feel relieved that I'm not the only one.  I am envious and proud of my Sister who has done so remarkable well post PTG and looks like she has never had her stomach removed.  I feel for those who are about to go through the surgery or are having it done in the near future and wish that they didn't have to have it done, I wish that there was another option.  It is tough, it is an emotional roller coaster, it is frustrating, it is something that I don't wish upon anyone, it is life changing yet it is a relief knowing that I will not succumb to the cancer that ended my Grandfather's and Uncle's lives.  I am lucky to have been given the knowledge of the fact that I inherited the CDH1 gene mutation and given time to take this preventative measure to save my own life.

So, 12 months down....another 12 months hopefully all will be different again (in the weight department especially).  As I say to myself frequently.......'Suck it up Trudy and get on with life, I'm lucky'.

No one tells you.

I was going to wait untill I hit the 12 month mark before I added another post but I figured 11 months post surgery was close enough.  It's a new year and I am very glad that 2011 is behind me, it was a tough year. 

Right now I am feeling a great deal of relief that I have come this far and that the worst of it is over.  I very rarely have the feeling of my food getting stuck in my esophegus anymore, it would probably only happen a couple of times a month now.  Usually it is my own fault because I eat too fast as I forget that I don't have a stomach.  Most days I just don't stop eating....I just constantly eat.  I did however a couple of nights ago experience bile reflux, to explain it it's like having relux without the acid crossed with a morning sickness feeling.  I didn't sleep well that night.  I eventually took an anti nausea tablet the next day (why I didn't take one that night I don't know!) and got myself some Mylanta and felt much better as the day progressed.

My weight has stabilised now, I think due to the fact that I'm eating a pasta dish every day under strict instruction from my surgeon and dietician, I'm also taking a multi vitamin (kids chewable ones), Vitamin C (chewable) and still taking my iron tablet.  I just want to gain another 5 kgs!!!  My dietician contacts me at regular intervals, 'checking up' on me.  She and my surgeon were not happy with my weight loss and I have to go back to see them in a couple of months, I think I'm back on their priority list now.  Seriously, I eat so much food but just don't seem to be able to put much weight on.  I also add Proform Neutral into my hot drinks (energy supplement).  There isn't much more I can do. 

Something that no one tells you is the emotional roller coaster you have to face post surgery.  No one tells you that you go through feelings of greif, for me it is not only losing a major organ but the huge amount of weight (20 kgs for me), I've lost half of myself on the outside and a part of me on the inside.  Other people only see the outside.  No one tells you about the bouts of depression that you can feel, like when I look in the mirror and see a skeletal body that has lost all it's healthy body fat and roundness.  Or when I look at my face and see sunken eyes and gaunt cheeks.  No one tells you about the feelings of anger that you can feel, like when random strangers tell you how lucky you are to be skinny, I feel like yelling at the top of my lungs that I didn't choose to be skinny, I had my stomach removed so I didn't get stomach cancer, I did it to save my life!

Some days I am SO thankful that I will never get stomach cancer (HDGC), that I 've eliminated my chances, other days I'm seriously pissed off that I had to go through this and feel like I'm being punished.  No one tells you about these emotions. 

I figure now I have another 12 months untill I at least gain some weight and start to feel like a normal person again.  Well, normal without a stomach.  This year 2012 is my year, my time to focus on gaining some weight, focus on my family and creating happiness within myself.



February 2011          January 2012

The scars are fading.........................

The physical ones anyway, they have gone from bright red to a nice pale pink!  The emotional ones (scars)are probably at the worst they will get, put down to the fact that I've lost 20 kgs and am feeling very self conscious about my appearance.  I didn't think I'd lose this much weight but I'm guessing because I've had 2 colds in the past 6 months that hasn't helped either.  This cold and flu season has been pretty bad for everyone this year.  I very rarely got colds or the flu prior to gastrectomy, I always caught the stomach bugs!  Ironic isn't it. 

6 and a half months have passed since total gastrectomy now.  My eating habits and serving sizes have really improved.  I did gain 600 grams, not much but that's alot to me!!  My relationship with food is much better and I am constantly searching for new things to eat and find that I feel 'hungry', well a new style of hunger now.  It's like an airy, empty feeling that will only go away once I fill it with food.  I miss the normal, I've got a stomach hunger, I knew I would.  I also miss satisfying that hunger, now when I eat, I do it because I have to not because I'm starving and need that full satisfying feeling.  I eat now, it fills the empty feeling and that's it.  I'm hoping over time that will get better.....maybe???

I'm finding Dairy a bit more tolerable and can handle eating a frozen yoghurt every now and then.  Ice cream is no longer desired, I might have a tablespoon of some just because I feel like it but I couldn't sit down and eat a massive bowl of ice cream like I used to.  Funnily enough, I really don't miss it that much, when I thought I would prior to surgery!  I think it's because I know that if I ate it I will get that horrible gurgling feeling run through my intestines and I try to avoid that!  Still drinking the Lactose Free milk and finding it much better tasting then normal milk so will stick with it.

Lately I've been craving lots of junk food like chips, chocolate etc...  I tend to go through phases of what I really like to eat and then it will pass and I'm onto some other food. 

I don't suffer too much with dumping syndrome anymore, diarrhea is very rare these days.  The only dumping syndrome symptom I really got anyway was my food getting 'stuck' in my esophagus and having to vomit up the saliva so the food would go down.  As my surgeon said to me the last time I saw him it would take some time for my body to work out its 'new rhythm' to accept and digest food, so I must be getting there. 

Processed foods are really easy to eat, probably because they are processed and all the hard work of chewing is done for me!  Fresh food and meat like steak or any type of beef is really tough to eat.  Chicken, Fish and Lamb are all pretty good.  I would love to eat a salad but right now I know I would struggle so will wait a few more months before I try.  I used to love caesar salads maybe I could try a greek salad instead.

I have been out for dinner a few times now, the kids get a little impatient because it takes me so long to eat, but they are getting better and are slowly understanding.  It did take about 3 times of going out for dinner to have a successful meal (and not spend most of the time in the bathroom), I know where I went wrong now though, I ate some garlic bread before I ate my meal.....silly me, bread is too filling and clogs up my intestines so the good food I should be eating won't go down.  I now eat my (cold) garlic bread after my meal! 

I figured out a while ago that I need to drink lots of fluid throughout the day, if I don't it's harder to eat.  Water makes me feel very nauseous so I stay away from it, weak cordial is OK, it takes the yuk feeling away from the water.  I mostly drink Powerade, Juice, Cordial,Tea and Coke.  They all seem to work. 

I still take my iron tablets everyday, I changed my multi vitamin brand and found that it made me nauseous so I need to go back to the original one I was on.  Taking tablets is still really hard, ugh!  Yuk!  Sends a shiver down my (boney!!) spine.

I'm back at work now, part time and really enjoying it.  Being busy has kept my mind off my post surgery woes and has definitley made the months pass more quickly!  12 months post surgery here I come!!!

Photo taken 6 months post surgery.

Cold Dinners.

Hot dinners are now a thing of the past, well any hot meal is.  It takes me so long to eat that my food goes stone cold way before I am even half way through my meal!  4 months tomorrow since my gastrectomy and I must say there are a few things that are getting VERY ANNOYING.  Like the fact that every time I eat my dinner I end up having to force myself to vomit up the first few mouthfuls of food because of the excruciating pain of those few mouthfuls getting stuck in my esophagus.  Oh and the fact that I don't eat hot meals anymore. 

I don't feel nauseus anymore, yay!!  That stopped about 6 weeks ago.  I think my weight may have stabilised, I decided not to weigh my self religiously every Wednesday and just weigh myself when I think of it.  So far I have lost 14.7 kgs.  I can now semi skull a drink, another yay!!!!!!  Something I really missed in the first 2 months.  Dairy products are still off the menu, but am finding Lactose Free milk works well and my 3 and 1/2 year old son likes and prefers it now too! 

I do find that I get cravings for certain foods......Dim Sims:  tried eating them twice but they just didn't work for me so I gave up.  Cheesecake:  mmmmmm yum, have been eating cheesecake the last few nights!!  At the moment any food that is fried, crumbed etc...seems to be very easy to eat.  I really just eat whatever I 'feel' like eating (considering I don't feel hungry), usually if I 'feel' like eating something then I can normally eat it without any problems, minus the Dim Sim situation.

I'm taking Fefol (iron supplement), a Multi Vitamin and Vitamin C every day.  I've had 2 B12 injections so far (one at 8 weeks and one today).  My last blood test at 8 weeks post op showed that my iron levels were a little low but everything else was fine.  I'll get another blood test done at 6 months post op. 

I'm finding that I'm not sleeping very well at night (maybe because I was due for B12), will see how the next few nights go, maybe having the B12 might help???

I have my yearly Breast screening this week and a Surgical Review at the Hospital next week, I must remember to thank my Surgeon for looking after me and doing such a wonderful job (if I see him).

Everything else is pretty 'normal'.  Life is busy and I'm thankful that I will never have to worry about developing HDGC ever again in my lifetime!!!! 

Photo:  Me and my boys (4 months post op).

Feeling pretty good....

2 months today since my surgery, it has gone pretty fast and I'm happy to say I feel pretty good.  I've had a few dramas with eating, mainly my food getting 'stuck' after the first few mouthfuls and having to force myself to vomit, but I only seem to vomit saliva.  Occasionally I will vomit a bit of food but only when I have eaten something quite heavy like rice or pasta, then the vomiting episode consists of a choking vomit, my face going red, being unable to breathe, my eyes watering and my nose running!  Not pleasant but it doesn't last very long and after the episode I feel much better and can usually manage to eat the rest of my meal.

I've lost 9 kgs so far, I actually just recently lost 1.5 kgs in 5 days and that scared me because I was feeling pretty good and had no problems with eating, since then I have increased my portion size and am making myself eat more which is so hard when I don't feel hungry or have any desire to eat!!

Some days I feel nauseous all day and struggle to eat but then most days I am fine.  Finding foods to eat is a bit of a struggle, I am getting a bit bored with food and am continually searching for something 'new' to try.  I have noticed the last couple of days I have some pain in my lower intestine/bowel after I eat, could be connected to the fact that I have increased my portion size and am eating more.  I have a Doctors appointment with my GP tomorrow so will discuss it with him then.  I have also started taking a slow release Iron tablet every day and am hoping that it is helping.  I will probably need to look at getting a B12 injection in the next couple of weeks, something I will also talk to my GP about tomorrow. 

I generally have a little nap every day after lunch, some days I'm fine without it but find I get very tired about 6pm and struggle with dinner. 

My hormones have been pretty messed up since my surgery and it has affected my menstrual cycle however things have seemed to settle down in the last couple of days.  Life is pretty busy and back to normal I guess, busy with the kids and all their activities, housework, I even managed to go out for dinner with some school friends on the weekend (I didn't eat much but thoroughly enjoyed my meal and the company I was with), it was a great night and am looking forward to doing it again soon!  This weekend I'm off to see Keith Urban in concert, can't wait it will be a great show!!! 

My main concern is weight loss at the moment, I only have about 5 more kgs I can afford to lose so hopefully things settle down soon.

My next post with be at 6 months post surgery, unless anything happens in between now and then.