Then the world turned upside down with the diagnosis of my partner's diagnosis of bowel cancer

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Then the world turned upside down with the diagnosis of my partner's diagnosis of bowel cancer

I would like to know what it feels like for other people when they hear the word bowel cancer and they coped in the first weeks. Also would like to hear about decisions people make about whether to have surgery for Stage II bowel cancer w/o chemo & radiotherapy. What do you find most helpful in your support of a loved one when they make decisions about their quality of life.
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Re: Then the world turned upside down with the diagnosis of ...

Hi there, I dont know about bowel cancer per se, but I know with gynae cancer the blood rushed backwards and I felt as though I didnt know whether I was arthur or martha! For me, just having my hubby and children around was enough - their love and support is what gets me through the rough times 🙂 Teach
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Re: Then the world turned upside down with the diagnosis of ...

Hi valerne I cant comment on bowel cancer but i can say that when i was first diagnosed with cancer it was life changing, mind blowing, devastating and a lot of other things that i cant think of right now. It is a very frightening thing to be told and yet that does get better. Once you get a direction to head in regarding treatment etc... i found that it did lessen all those horrible feelings. Of course not everyone is the same but eventually it does get better. 🙂 I think for me the first bit of this journey was the hardest. The waiting for test results and treatment plans etc... Once there was a plan in place i think i felt more secure and then of course came a different set of things to deal with. Side effects of treatment can be not so great but doable. I think for carers there is an added thing in that they often feel powerless to help and yet just by being there they are helping a huge amount. As for surgery versus treatment, i was offered the reverse of that. treatment and if that worked no surgery, which is where i am currently at. You might find a social worker at your hospital helpful in providing you with other details of what is available for you in this journey. It does help to have someone that you can keep in contact with and as i have stated more than once on this site, i find my nurse coordinator an absolute gem for info and support. Hope that helps you a little bit. Julie
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Re: Then the world turned upside down with the diagnosis of ...

HI Valerne, I was daignosed with stage 2-3 bowel cancer in august 2007. the surgery was a no brainer for me as my bowel had completely closed in on itself as a result of the tumour and would have perforated had I not had emergency surgery. After that, i made a decision after a lengthy and informtive discussion with my oncologist that I would go ahead with the 6 months of chemo. My husband and i discussed it and I talked with friends and read all of the literature that my doctor gave me.It wasn't an easy one but I decided that if it meant that there was a greater chance of it not returning than I, personally, needed to do it. Radiation wasn't an option for me and never discussed. It is not an easy decision to make as the diagnosis and treatment have been incredibly life changing and I have had to make many adjustments. I am now coming to terms with many of those adjustments and coming to realise that sometimes life just hands these things to you and you have to do what has to be done. I feel for you and your partner as it is not an easy road. to be honest, the surgery was the easy part and I struggled considerably with the chemo. But I have been back at work for 2 years and so far so good! Good luck with your decisions. As a support person, just be there (even when your partner is being irrational!) samex
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Re: Then the world turned upside down with the diagnosis of ...

hi Valerne, my Husband was diagnosed with stage II rectal carcenoma in September this year. At first we just crawled into our shells and telling our children and family was terrifying. Tests tests and more tests. 5 weeks of chemo via picc line and radiation every day for the same. Also kidney stones need to be removed surgically. Unfortunately as the tumor is so low down resection is not possible,so it is a permanent Stoma. His surgery is in 2weeks then more chemo. He has some days that are ok and some Not ok.He tries to keep positive at times it is a struggle.I need to talk to someone about what to expect next. We were always close but this has bought us even closer. Ocean Views
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Re: Then the world turned upside down with the diagnosis of ...

Hi Valerne I am 31 years old and i was diagnosed with stage 111 bowel cancer in June 2010. It was very hard at the beginning waiting on results from the tests and scans to determine which stage i was at and what treatment i would be having. I wasnt really given a choice i just went with what my doctors suggested, i guess i had complete faith in them, they told me that i would be having an operation to get my ovaries out of the way for radiation and a port put in my shoulder area for chemo. I then started six weeks of continuous chemotherapy and radiotherapy, this involved moving my husband and kids to the city for six weeks, not an easy task but one that had to be done. I then had a six week break and waited for the operation, i knew i would be waking up with a bag but i didnt know if it was to be permanent or not, after the operation i then had more chemotherapy. Now i look back i think what a year, i also feel very sorry for my very supportive husband, he was fantastic but i warn you now it would not be easy being that person, unfortunately all my anger, frustrations etc were taken out on him. This cant of been easy for him at all. I think i made all the right decisions in regards to my treatment, it was a long hard journey but one i would do again if it meant i had a life to live at the end of it all. I wish you and your partner all the very best for this hard journey think of the end outcome though, it isnt easy but i chose to take each day as it came and i would have it in my head in a six week block, get through that block then worry about the next step. Goodluck and im sure you will be fine, its amazing how you manage to cope thru lifes tricky situations. My thoughts and prayers are with your family
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Re: Then the world turned upside down with the diagnosis of ...

I have a rare cancer called adenoid cystic carcinoma .When I was diagnosed 2 months of tests (scans,biopsies ) and planning for surgery followed. This was the scariest time of my life. Without my husband I can't imagine how I would've gotten through this time.My other great supports were my daughter and one friend in particular. I discussed the surgery options with these 3 people and finally agreed to give the surgeon the go ahead to do what he thought best . What I needed from these 3 was open discussion . From my husband I needed lots of hugs. I experienced sudden moments of insecurity. His being there helped a lot . The 3rd thing I needed was to be allowed to just sit and think sometimes. This was not always beneficial but I wanted to do it sometimes as there was a lot to think about. This may help answer your question. Still,everyone is a bit different .
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Re: Then the world turned upside down with the diagnosis of ...

Hey Valerne I had stage 3 rectal cancer last July and then a whirlwind of activity... within a week of diagnosis surgery, then 7 months of chemo including continuous chemo and 6 weeks of radio. I had an illeostomy for 6 months and a portacath in my chest. All those specialists and all that treatment made me a survivor and I am glad I went through it because the other option was letting the cancer take over. I did learn that I had to take the lead and ask LOTS of questions and be the person who was responsible for what happened next though. It was a horrible time but as far as quality of life goes my gorgeous partner was a rock and we still went to lots of concerts and made lots of fantastic meals (even though two of them put me back in emergency!) The most helpful thing he did was just be there and not be horrified when things were disgusting... like when he let me wear his clothes because I crapped all over mine! It is a scary scary time and I was so grateful just to know that he cared about me and was with me. I still am. I wish you and your hubby well - it could be tough for a while but you have each other and that's a great thing. cheers Eta
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Re: Then the world turned upside down with the diagnosis of ...

Hi, This is my first post on this site. On 8 Nov 2011 my husband told me that he had cancer on the way home from having a colonoscopy. While he was blase, I was numb and stayed numb for the next four or so weeks as all the tests were done - each week brought worse news. He has Stage IV colorectal cancer and multiple liver mets. He had the primary removed on 30 Nov with a lymph node clearance, and now we are trying to deal with the liver mets. A liver resection is not possible and the oncologist is clear that my husband's Chemo is palliative only. My world has turned upside down too! I am happily married to my soul-mate - yet I am now contemplating a very uncertain and lonely future for me and my children. I never expected that I'd be a single mother. I am 40 y.o.. I try not to think too far ahead as I find staying in the present helpful in dealing with my grief for the most part. I am learning to tell people to stop when they ask too many intrusive questions or want to talk too much about the future. I've learnt to accept help and even if it is just for respite. I make time for me every week - a massage usually, or a movie with a friend. I am back at work and being back in a routine has definitely helped. Despite this, I've been drinking too much and having a bit too much chocolate & ice cream... I am diabetic, so this has stopped as of this week! And, I still regularly collapse in a heap - usually late at night when I am on my own! I have a 6 y.o. who doesn't quite understand death (apparently daddy will turn into the Hulk!) and a 9 y.o.. I've been dealing with my own reactions - numbness, despair and avoidance... all the while having to carry on as normally as possible for the kids and deal with their reactions (the 9 y.o. has struggled and his behaviour has at times been awful). It has been very hard work and very emotional. Meanwhile my husband is taking this all in his stride. I suppose he is in 'fight' mode and quite a different place to me. I admire him really in the way he has handled it and remained positive. He was the model patient after surgery, and he is tolerating the Chemo well - and was able to meet his goal of going back to work 8 days a fortnight while on active fortnightly Chemo cycles. People say that it is good to see that we are back to 'normal' - what!!?? I no longer know what 'normal' is and I am worried about the future and how his disease will progress in terms of speed / symptoms / pain etc. I am rambling - I just wanted you to know that you are not alone. Veronica
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Re: Then the world turned upside down with the diagnosis of ...

Wook! Please check out a post on anere's blog about good books to help your kids(and yourself). I am 39, and my 38 yo soulmate was diagnosed with rare cancer 3 years ago...... I know what you are facing, but these books really help! Good luck and positivity coming our way! PA
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