Inbetween my bowel cancer

[Glenys]

43 is young for bowel cancer in women, but with a my family history of cancer I was about to begin a long journey in Oct 2016...

Today I'm INBETWEEN 

My tests are good but still a CT every 3mths and the port flush every 6 weeks....but I'm not well enough to go back to my life of work and social events.  But I'm getting better!

But I'm not sick I'm Inbetween

I was looking for a support group for people going through bowel cancer like me...I'm too old for the cancer social group and I'm not a senior 

When i was diagnosed I looked at the situation from the point of view that my mind was fine and my body was being invaded by a nasty pest that had a really bad sense of humour ,and now it was on holiday around my body. Bowel and liver..

So bowel surgery and liver

next chemo

All I can say about chemo is weed was my little secret to dealing with that

wait..... Its BACK in the liver again

More Surgery and now first name basis with Footscray Hospital

back to chemo.....

I have a few tips for chemo recovery coconut oil is amazing on the skin and for oral issues.Painting my finger nails to stop them from breaking 

A body pillow in bed. And I sill have my shower chair.

Keep tissues ,water bottle and vomit bag and in my case underwear if leaving the house.

And that taste .....yuckkkk

I found salt and vinegar chips good and cordial sometimes helped. 

Im still on a journey and would love to here your adivce or feedback

or a question....

[Katekat]

Morning @Glenys and welcome 

Thank you so much for sharing your story, what an experience you've had!

It's sometimes hard to find the space that works best for you, I do hope that you enjoy your time here and the Online Community works for you. We're still relatively small but there are some amazing people here and everyone is incredibly supportive of each other.

Don't be a stranger, just jump on in

[RJG]

Hi Glenys,

It has been a while now, but my worst memory of eating was while in hospital following my surgery (total gastrectomy in August 2017). Everything tasted the same - a plastic, disinfectant taste. It was so bad that I lost interest in eating, but did eat for the good of my family.

For me, the only thing that seemed to break through the bad tase was strong salty foods like salt & vinegar chips. But I got tired of that really quickly; I was also concerned about the amount of salt that I was consuming. Unfortunately, I could not find any way around it. You do what you have to do.

I wish that I had a better answer for you. Just keep a firm eye on the end-game and do what you have to in order to get through this very unpleasant "journey". 

"Keep a-dancin Maria!",

Rick

[Glenys]

Hi Rick

Thank you for your message

I know sharing our experiences help us by talking to other going through similar situations.

Family and the medical teams try to understand but it's hard for them too.

And if we can help someone else with a tip with dealing with journey, that amazing

Take care and thanks again

Glenys

[RJG]

Hi Glenys,

You touch on a rather poignant point - it is not just the paitient who has to deal with the remifications of cancer.

It is also a really big deal for all of the family. Not only do the loved ones have to deal with helping clean up accidents, but also dealing with the wild emotional swings, the change in routines, the change in diet, and the list goes on. And then they also have the threat of "is there a genetic link - will this happen to me?".

And, from my exeperience, medical staff involved in the treatment of cancers generally exhibit great empathy and are very caring. It must be hard on them to see and deal with families enduring their dilemas with such a variety of outcomes.

So I don't think of the cancer I had as being a personal affliction, it is more of a family plight - a difficult problem to be shared both in terms of chores as well as emotions. We (and men especially) need to talk it through and let our loved ones know what is going on in our heads so that others can pick up the slack or be strong when required. I know that, even though I was the patient, I have been strong for my family when they need it and they have been strong for me all of the rest of the time.

So get the message out there and share with your family and friends. The more that we talk about it, in a positive way, the greater the awareness and the better informed others will be to step in to help when required.

Best wishes to all,

Rick

[Edward]

Very interesting post. I have had two bouts of cancer a little over 12 months apart. I had my first in my rectum and then a secondary in my liver a bit over 12 months later.  I had a large portion of my bowel removed and then 45% of my liver was removed and I have not been normal since. I also had three rounds of chemotherapy and six weeks of radio therapy.

As a result of the cancer I am now not able to tolerate a lot of food and oil is something that causes me a great deal of grief. Generally if I eat food that contains any oil I need to be very close to the bathroom for quite a time as it has this effect on my system.

I am now trying to work out what I can do to soak up the excess oil in my system to enable me to eat food that I really enjoy.

[Glenys]

Hi Edward

Sorry not to get back to you sooner. I hope you are doing ok! I personally haven't had a issue with oil. I know we are all so different, our diagnosis is different and so is the treatment. 

I personally have a used coconut oil in my diet, most medical information from the hospital etc... said to not have it. I used as oil to cook.

On my skin for abrasions and for my mouth, oral pulling. 

I wish there was more research done on marijuana and its help with side effects of the treatments.

I personally have a used to cope with the recovery.  And apart from being illegal ( and sometimes hard to get)and expensive.

I know when I have it, it calms everything down, it helps with my gastro.

As I say it helps me, and everyone is different, if the research was done, It would help so many people. 

One chemo session I spoke to another patient, she commented on how good I was looking. I was coping with the treatment quite well.

Putting on weight. ( And It was not the steroids,that made me into the HULK, and wow was I angry with the world after taking them.

So I stopped )

It was the marijuana, it helped me eat,sleep and cope.

All my doctors encouraged me to in fact...

I don't understand why, they prescribe things like steroids to us that causes major side effect, and there is a answer..

I'm 45 single, no kids and family in a different country,

Life with cancer can be expensive and not being able to work makes living a joke, we become survivors but at what cost.

I'm sure I wasn't much help, but its always nice to have someone who understands.

I will answer sooner,next time 

[RJG]

Hi @Glenys ,

How are you faring these days?

Have you finally gotten your taste back or are you still craving the S&VC? I have moved on to a home-prepared trail mix of nuts, rice snacks, soy snacks and dried fruit. It helps to keep my weight up, but I am starting to get a bit 'over it'.

And have you managed to get access to medicinal cannabis through your doctors? If so, is it working for you? If not, what is stopping you? I have been fortunate that I have never felt the need for this sort of alternative treatment.

Please keep us informed on your 'journey'.

Hugs,

Rick