Hello...I'm new :-)
I just wanted to say 'Hello' really. I spent some time reading the board before joining earlier today and wanted to introduce myself to the members.
I'm Dizzie and I live in London, UK, I'm 50 and a mum to two lovely boys - one is adult the other still a child (11 yrs)....
I was diagnosed with Stage 3 rectal cancer in April and have had sessions of Radiotherapy over a 5 week period in June of this year. I was also supposed to have Chemo (Xeloda by tablet form)at the same time as the Radiotherapy but they stopped it after just 3 days as I had a reaction that they were worried about.
My surgeon says the Radiotherapy has made NO difference to the tumour, that was really disappointing as it's the most painful thing I've ever endured...to hear it made no difference was really hard :-(
I've recently had a PET scan - had to really dig my heels in to get that done as they felt it wasn't necessary - but I wanted complete clarification of what is happening actviity wise with this 'thing' - and am now waiting for the results, any day soon.
After that, we'll be discussing my surgery. The surgeon's plan is APR and a permanant colostomy - I've had a lot of trouble coming to terms with that and wasn't prepared at all when my surgeon mentioned that was what lay ahead for me now.
Anyway, that's where I'm up to at the moment.
You all seem really friendly on this site and that was my reason for joining up and to make some new friends who understand what it's like to receive that dreaded diagnosis, (and to get some sympathy when I'm having a bad day, can't be in a great mood all the time - lol) and to offer some positive thoughts along the way to anyone who may be as worried and confused as I was back in April...
Hope to chat with you all soon
Diz x
Comments
-
colostomy
Hi Dizzie,
My Mom had her surgery in July for a permanent colostomy. She was 78 years old at that time. She is doing remarkably well with the bag for someone her age. It was really scary at first for us, I am her daughter and she is living with me at the moment. It does take a little getting used to but I am sure you will be able to handle it just fine. We don't have a lot of experience just yet, like a lot of people on this site, but I wanted to try and help and make you feel better. We just found this site about a week or two ago and posted a question and got a lot of help and feedback. The people here are wonderful. I guess the fear is of the unknown. You really will be able to handle it. My Mom is living proof that you will be able to adjust. She is at the point where she can change the bag herself every day.
If you have any questions, I will try and help, but a lot of other people here have a lot more experience.
Hope this helps. You will be in our prayers.
Lin and Ellie0 -
HelloLuv2lunch said:colostomy
Hi Dizzie,
My Mom had her surgery in July for a permanent colostomy. She was 78 years old at that time. She is doing remarkably well with the bag for someone her age. It was really scary at first for us, I am her daughter and she is living with me at the moment. It does take a little getting used to but I am sure you will be able to handle it just fine. We don't have a lot of experience just yet, like a lot of people on this site, but I wanted to try and help and make you feel better. We just found this site about a week or two ago and posted a question and got a lot of help and feedback. The people here are wonderful. I guess the fear is of the unknown. You really will be able to handle it. My Mom is living proof that you will be able to adjust. She is at the point where she can change the bag herself every day.
If you have any questions, I will try and help, but a lot of other people here have a lot more experience.
Hope this helps. You will be in our prayers.
Lin and Ellie
Hello and welcome. Sorry you find yourself here, but glad you came. This board, and the people on it are a great source of comfort and support. Again, welcome.
Sheri0 -
Hi Dizzie
Welcome to this discussion board. I am sorry you have a need to be here, but you have come to the best support for colorectal cancer that I have found. I am really sorry the radition didn't shrink the little bugga* but @ least you know you tried it. Please post as often as you want + ask any questions you might have; someone is sure to help. You are up late I think, in merry old England! Sweet dreams.0 -
Diz......
Re:
"The surgeon's plan is APR and a permanant colostomy - I've had a
lot of trouble coming to terms with that and wasn't prepared at
all when my surgeon mentioned that was what lay ahead for me now. "
Do yourself a major favor, and read here: UOAA
Ask questions there, and you'll get the scoop regarding pre-op
prep-work and the proper location for the stoma.
You'll do fine, so don't worry about what you're facing.
John0 -
Hi
Hi, Diz.
I'm glad you have come out of the lurky shadows and introduced yourself. I don't blame you for being disappointed about the radiation. Results would make it seem more worthwhile, for sure!
I'm praying things will improve for you, and I'm glad we'll be able to get to know you.
*hugs*
Gail0 -
Welcometootsie1 said:Hi
Hi, Diz.
I'm glad you have come out of the lurky shadows and introduced yourself. I don't blame you for being disappointed about the radiation. Results would make it seem more worthwhile, for sure!
I'm praying things will improve for you, and I'm glad we'll be able to get to know you.
*hugs*
Gail
Hi Dizzie,
Welcome to the club nobody would choose to be in
If you wind up with a colostomy, it's not that bad. I'm new to it, got mine in May of this year.I to am sorry you find yourself here, but you are with family now. So read as much as you can and then ask questions. I have learned so much more here than I have from my doctors. You will get the real truth about things here and not what the doctor thinks he knows about it. Don't get me wrong my docs have been great, but since they have not personally gone through this journey, they just don't know some of the finer details we all learn.
Don0 -
Welcome Dizzie! It will becoolvdub said:Welcome
Hi Dizzie,
Welcome to the club nobody would choose to be in If you wind up with a colostomy, it's not that bad. I'm new to it, got mine in May of this year.I to am sorry you find yourself here, but you are with family now. So read as much as you can and then ask questions. I have learned so much more here than I have from my doctors. You will get the real truth about things here and not what the doctor thinks he knows about it. Don't get me wrong my docs have been great, but since they have not personally gone through this journey, they just don't know some of the finer details we all learn.
Don
Welcome Dizzie! It will be nice chatting with you! Although its sad that there is so mnay newcomers lately, I'm glad you found the site.
Chat with you soon!
Breath....
Try to stay relaxed
Smile when you can0 -
Hi Diz
Glad that you found us, sorry you needed to.
I can relate to your fears. I got my firm diagnosis January 2010. I got my permanent colostomy mid March.
Believe me I tried to think of all kinds of options other than have a colostomy, but it kept coming back to that is what was needed. Since having it done, I have had no problems with it. I am definately older (63) and have a different lifestyle (no youngsters to worry about), but I have not found it to cause me to change much about what I do.
You are right that there are lots of friendly and encouraging folks here, and they can help to answer some of your questions or concerns. Since you live "across the pond" from many of us, the treatments and meds may be a bit different, but am sure it can be sorted out.
And yes, there are times when we just need someone who can really understand listen to us while we express our concerns or frustrations. Folks here are good listeners and encouragers too.
Take care and let us know how the scan turned out.
Marie who loves kitties0 -
Hello
Welcome to the board. I too am from England, London. I am now living in Switzerland with 2 daughters 10 and 11. There are so many wonderful people here that I am sure all your questions will be answered. Become a pest to your doctors and don't give up when it comes to having treatments and tests.
Anne x0 -
colostomyLuv2lunch said:colostomy
Hi Dizzie,
My Mom had her surgery in July for a permanent colostomy. She was 78 years old at that time. She is doing remarkably well with the bag for someone her age. It was really scary at first for us, I am her daughter and she is living with me at the moment. It does take a little getting used to but I am sure you will be able to handle it just fine. We don't have a lot of experience just yet, like a lot of people on this site, but I wanted to try and help and make you feel better. We just found this site about a week or two ago and posted a question and got a lot of help and feedback. The people here are wonderful. I guess the fear is of the unknown. You really will be able to handle it. My Mom is living proof that you will be able to adjust. She is at the point where she can change the bag herself every day.
If you have any questions, I will try and help, but a lot of other people here have a lot more experience.
Hope this helps. You will be in our prayers.
Lin and Ellie
Hi Lin and Ellie,
Many thanks for the lovely positive reply. You're right, it is the fear of the unknown that's driven me to absolute distraction.
I'm sure I will be here after the op asking for advice but I just hope that I manage as well as your mum is doing :-)
It means alot to hear from others who are actually coping and adjusting.
Thank you x0 -
Hi Marie :-)Lovekitties said:Hi Diz
Glad that you found us, sorry you needed to.
I can relate to your fears. I got my firm diagnosis January 2010. I got my permanent colostomy mid March.
Believe me I tried to think of all kinds of options other than have a colostomy, but it kept coming back to that is what was needed. Since having it done, I have had no problems with it. I am definately older (63) and have a different lifestyle (no youngsters to worry about), but I have not found it to cause me to change much about what I do.
You are right that there are lots of friendly and encouraging folks here, and they can help to answer some of your questions or concerns. Since you live "across the pond" from many of us, the treatments and meds may be a bit different, but am sure it can be sorted out.
And yes, there are times when we just need someone who can really understand listen to us while we express our concerns or frustrations. Folks here are good listeners and encouragers too.
Take care and let us know how the scan turned out.
Marie who loves kitties
Hi Marie,
Yes, like you I've tried to think of numerous different things but it all keeps leading back to the tumour being just too low and therefore zero other options.
When I was first diagnosed I thought because it was so low it would be EASIER to treat - how wrong was I :-)
I've learned so much on my journey but feel I'm a long long way from knowing all I need to know yet.
It's good to hear that you are coping well with your colostomy and nice to hear that you've not had to change much that you do.
Thank you for the advice Marie xx0 -
Hello Annesnowyswitzerland said:Hello
Welcome to the board. I too am from England, London. I am now living in Switzerland with 2 daughters 10 and 11. There are so many wonderful people here that I am sure all your questions will be answered. Become a pest to your doctors and don't give up when it comes to having treatments and tests.
Anne x
Hi Anne,
You're right, the people here are lovely and that's what encouraged me to join :-) I felt the warmth in their replies (not all forums out there as anywhere near as friendly as this one) and it felt like a nice place to be - although as others have pointed out, we'd all rather NOT be here of course.
I have been a pest, an official nuisance is how I've described myself, to both my own Doctor and the Surgeon at the hospital. I will do the right thing when I'm sure I've explored all avenues not just because they say so with limited information. It's been a struggle to get information from them all along. I'm still having to keep asking what my CEA markers were back in April at the moment - so annoying as I feel I need this information to make a properly informed choice.
How long have you lived in Switzerland Anne? Lovely part of the world :-)
Talk soon, Diz x0 -
Thank you for the welcome....AnneCan said:Hi Dizzie
Welcome to this discussion board. I am sorry you have a need to be here, but you have come to the best support for colorectal cancer that I have found. I am really sorry the radition didn't shrink the little bugga* but @ least you know you tried it. Please post as often as you want + ask any questions you might have; someone is sure to help. You are up late I think, in merry old England! Sweet dreams.
AnneCan, John, Gail, Nana, Sheri....thank you all for welcoming me :-)
AnneCan you're right, at least I tried but I have to admit to being really disappointed when they said no difference. It was such a painful treatment right from the start and the only thing that kept me going back daily was the thought that it WAS destroying the little 'thing' - but it turned out to be tougher than I'd anticipated :-)
Just have to chop him out instead then I guess....I know he can't stay where he is that's for sure :-)
I'm always up late...since my diagnosis I find it hard to sleep at night but not from pain or anything, just hard to switch off and actually sleep.
Some nights I'm laying in bed for hours before I finally sleep - then I wake up every few hours for the bathroom, since the Radiotherapy treatment I find I need to 'go' more often than before. Probably easier to just stay awake - lol
Diz x0 -
Hi Don :-)coolvdub said:Welcome
Hi Dizzie,
Welcome to the club nobody would choose to be in If you wind up with a colostomy, it's not that bad. I'm new to it, got mine in May of this year.I to am sorry you find yourself here, but you are with family now. So read as much as you can and then ask questions. I have learned so much more here than I have from my doctors. You will get the real truth about things here and not what the doctor thinks he knows about it. Don't get me wrong my docs have been great, but since they have not personally gone through this journey, they just don't know some of the finer details we all learn.
Don
Yes, that sums it up really 'the club that nobody would choose'...but at least it's nice here anyway :-)
You've had your colostomy 3 months now Don...how are you coping? My concerns were initially probably more 'emotional' than practical (if that makes sense).
I was reasonably sure that with support I'd work out the practical side of changing the bag and working out when to do certain things or try a new product - my worries were always around the emotional side of things.
I simply didn't want to lose my rectum/anus and live with a bag, it felt wrong somehow but I've been giving myself a good talking to, often, and I'm trying really much harder now to face facts.
I think you're right about the Doctors not personally going through this, they can advise but how much can they actually really understand without experiencing this themselves...I feel people here can give me more support than a Doctor who hasn't got to spend his time living with a colostomy.
Again, thank you for the lovely welcome
Diz x0 -
Welcome
Welcome to the board but sorry you had to find us. We are all here to help you get through this journey and give you are experiences. Feel free to ask any questions that you may have as we have discussed many things on this board. Having an ostomy is not as bad as you initially think. It will take some time getting used to, but it just will become a new normal for you. Sorry that the radiation didn't do anything for you especially when it was so painful for you. Once again, welcome to the board. You will always have someplace to go for sympathy as we know what you are going through.
Kim0 -
KimAnnabelle41415 said:Welcome
Welcome to the board but sorry you had to find us. We are all here to help you get through this journey and give you are experiences. Feel free to ask any questions that you may have as we have discussed many things on this board. Having an ostomy is not as bad as you initially think. It will take some time getting used to, but it just will become a new normal for you. Sorry that the radiation didn't do anything for you especially when it was so painful for you. Once again, welcome to the board. You will always have someplace to go for sympathy as we know what you are going through.
Kim
Thank you Kim :-)
I'm usually able to be quite positive but there are times when you need to talk to someone that just 'knows' how you're really feeling...
I do think that I'm yet to reach my lowest point and that's when I will need some sensible people to give me a (gentle) kick up the bum and get me back on track.
I think I already know that will be once I've had the surgery.
Until then I'm able to feel quite upbeat about things...but yes, I'm scared of the unknown and it's really helpful to know that you guys are here ready to help me through this :-)
Diz x0 -
Dizzie,Dizzie said:Kim
Thank you Kim :-)
I'm usually able to be quite positive but there are times when you need to talk to someone that just 'knows' how you're really feeling...
I do think that I'm yet to reach my lowest point and that's when I will need some sensible people to give me a (gentle) kick up the bum and get me back on track.
I think I already know that will be once I've had the surgery.
Until then I'm able to feel quite upbeat about things...but yes, I'm scared of the unknown and it's really helpful to know that you guys are here ready to help me through this :-)
Diz x
I am sorry that you
Dizzie,
I am sorry that you had to find us, but you will be so glad that you did. this journey you are on will be scary at best, but we all have been there, or are there, or going there, and you can get the support you need right here.
I pwersonally think the fear of the unknown is the worst. for every step i had to take and to learn what was happening was the hardest, but you know what? After I did it once I could manage to get through it. You have alot of choices to make and you need to decide what is best for you and your life. Just remain strong and be prepared to make decisions that you and you alone can live with. this is a roller coaster and don't forget to "remian seated until the ride comes to a complete stop"
Kathy0 -
Welcome from Barcelona Dizziekhl8 said:Dizzie,
I am sorry that you
Dizzie,
I am sorry that you had to find us, but you will be so glad that you did. this journey you are on will be scary at best, but we all have been there, or are there, or going there, and you can get the support you need right here.
I pwersonally think the fear of the unknown is the worst. for every step i had to take and to learn what was happening was the hardest, but you know what? After I did it once I could manage to get through it. You have alot of choices to make and you need to decide what is best for you and your life. Just remain strong and be prepared to make decisions that you and you alone can live with. this is a roller coaster and don't forget to "remian seated until the ride comes to a complete stop"
Kathy
It starts to be an international forum! First of all be aware that im the worst english
speaker of this board so anything you understand to me is a big achievement from
from your side! So congratulations!.
Here you will fin answers to your conncerns ,strength for your soul ,
some tears,and why not big laughs and friends!0 -
Sleeppepebcn said:Welcome from Barcelona Dizzie
It starts to be an international forum! First of all be aware that im the worst english
speaker of this board so anything you understand to me is a big achievement from
from your side! So congratulations!.
Here you will fin answers to your conncerns ,strength for your soul ,
some tears,and why not big laughs and friends!
Please ask your doctor for something to help you sleep. I needed sleeping pills to help after dx. It is really hard to think clearly when you are tired. Wish you the best. Laua0
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