[babyface84]

I will give them a call. The nurse before it all happened said biopsy results would take 5 working days to get back, so I was thinking the beginning of July.
A different nurse after the procedure, said there was nothing about a biopsy in my notes, so she didn't know of one was done. That was the whole purpose of today, so I am left feeling very confused. For the last 6 weeks we looked forward to today, thinking it was a light at the end of the tunnel and we would have some idea of what's going on, but now we feel like we know even less, and have another 5 weeks to wait. Then 2 weeks after that we are going on holiday for 2 weeks, do it will be sept before anything can be done.

[babyface84]

Well last Friday i had a phone call asking if i could go in on Monday for my contrast CT, then Tuesday i got another phone call asking if i could come in this morning to see the surgeon.

Mine was on annual leave so i saw his reg.

He said that I have a carcinoid tumour, which apparently is quite rare, and because im only 27, its even rarer.

They are going to do a right hemi colectomy and remove all the lymph nodes in the area. He said that it doesnt look like its spread to my liver which is fantastic.
I asked if it could wait until after our holiday in 5 weeks and he said that would be fine, as its quite a slow growing form of cancer.

So, any words of advice?

Im really worried about recovery after the surgery, i do have 2 disabled children, one that doesnt crawl or walk, so a lot of lifting involved.

Also i have an almost 9 year old son, should i tell him? He is already so angry at the world, he has so much on his plate with his sisters. He has noticed that something is going on, and i feel that i should try to put his mind at ease, but i really dont know how to go about that.

[creepersgonnacre...]

sorry to hear that OP. Could you perhaps start looking into respite care for your daughters? Or in home help? Maybe ask in the disabilities forum they are knowledgeable about such things.

I do hope you have a speedy recovery x

[maggiemack]

The last suggestions are good; this board is really helpful, and there must be some available help from a health-related agency.

With my husband's right hemi-cholectomy, he was in hospital for several days; afterward, he was told to not drive for a few weeks [2 or 3, I think] , as well as not lift anything heavy. But everyone's different, so ask your doctor to be specific about your expected recovery.

Ask your doctor [family or specialist, or both] well ahead of your surgery to discuss the removal of the lymph nodes and the consequences, particularly lymphedema [swelling]. Where we are, there's almost no recognition of or assistance with lymphedema, so I hope it's better there.

This is easier said than done with 3 kids and everything else going on, but try to take your holiday time to prepare for the surgery - rest, healthy food, whatever personal or spiritual connections you need to help you through.

I hope all goes well!

[ellie1326]

I just have to send you huge hugs, so sorry it's bbad news.

[adifferentme]

Hi babyface,
Sorry to hear of your results - it sounds like you well and truly had enough on your plate already. I'm glad you've been able to get your holiday in as planned, and hope you can get some fun and rest in during that time.

I wanted to reply because my situation was similar. I'm 29 and was diagnosed with bowel cancer at the end of March. I'm a single mum of two (9 & 7). I had surgery on 2nd May. I had the op on Wed and came home Sunday, but had another adult stay with us every night for at least a week after that. The biggest thing in that week was keeping on top of the pain medication. I started going for short walks and felt better each day, and after another week or so didn't need any more drugs, but the wounds still felt tender. I saw my surgeon 4 weeks post op and was ok to drive again after that. I was told not to lift anything over 5kg for at least 6 weeks. If your daughters require physical care, I think it will be very important to make arrangements for others to do that while you recover fully - the big issue after abdominal surgery is the hernia risk which can result in further surgery etc so you'll definitely want to avoid that. Do you have family that will be able to help?

I told both of my kids of my diagnosis - I spoke to the Cancer Council (which state are you in?) and they sent me a whole lot of info including a book to read with the kids. They both dealt with it incredibly well - I was very matter-of-fact about it (my son has ASD so this approach is always best for him anyway!) and explained that sometimes our healthy cells grow differently and can make us sick, and that some of the cells in my tummy had done that, so the doctors were cutting them out to make sure I didn't get really sick. I found the biggest issue was dealing with other peoples' reactions - my own kids weren't too worried except when they heard other people worrying about it - in those cases I explained to them that for some people cancer is very scary because sometimes if the unhealthy cells have been growing for a long time before the doctors find them people get very sick, but that the doctors had found mine very early and could take them out etc. They asked a lot of questions, like was I scared, would it hurt, would I be bald (chemo) and I just kept it simple and honest, and they really handled it well.

If you have any other questions ask away - it's all still pretty fresh in my mind!

[babyface84]

Thank you so much!



We are off on our holiday in the morning, and surgery is scheduled for Sept 10.



My husband will be at home with us, but as he has a back injury and we have a 17kg 3.5 year old that cant walk, crawl, stand etc we will also have to rely on some outside help to get through my initial recovery period. We have a fantastic social worker from DisabilitySA helping to co ordinate some respite care for the girls. He's aiming for 2 hours a day for bathing the girls, its the one thing my husband cant do alone.
Im hoping we get the full 2 hours, but there is a possibility that we may only get that every 2nd day.

My mum works full time, but has said she will do whatever she can to help, and school holidays start shortly after i should get home, so my 14 year old sister has also offered to help.



I ended up telling my nearly 9 year old, he cried and asked lots of questions and then very nicely told me if i went bald, dad would have to do all of the school pick ups. It was then i realised how resilient kids are. He went back to worrying about himself, which cheered me up immensely!

Chemo isnt usually used for carcinoid cancers apparently, but there is another medication that can be used. Alopecia can be a side effect, which worries me. I wish i wasnt so vain, but i guess i just am.

I havent been able to cry at all, i wish i could, i feel like i need to. Honestly though, i feel like ill wake up from surgery and they will tell me they got it wrong. How can i be sickwhen i dont feel that sick? My surgeon told me that its usually the surgery that makes people feel sick, and i'll believe it then.

[adifferentme]

I'm glad you found a way to tell your son - it will make it much easier for him when the time comes for you to go into hospital. Funny about his comment too - my 9 year old daughter wrote me a card and brought it to me in hospital the day after my surgery (after we had the results that there was no spread and I wouldn't need chemo) and she had written all these messages about loving me, get well soon, etc... Then slipped in P.S good you won't go bald

Most of the time it still feels completely surreal to me. I had no previous symptoms - just had a huge haemorrhage one day after dropping kids at school, and ended up passed out in hospital, which led to tests... The hardest thing for me has been the exhaustion. I was sleeping during the day most days for a good two months, and still need to nap a couple of days/week (3.5 months post op). I really do hope you get that respite care each day to help with your girls.