Inflammation (again, sorry!)

Adam26

Hi guys,

We see the oncologist 2 months post-treatment next week after my mum completed treatment for T1/NO/MO anal cancer. Inknow I've asked this before, but she keeps asking me the questions so sometimes it's nice to get repeated answers to match the repeated questions! Basically, is it normal to still have inflammation after 2 months and the odd spot of blood after she has gone to the toilet?

Secondly, do you think the oncologist may be able to give some indication as to whether the treatment worked at this meeting or will it just be an analysis of my mum's symptoms and how she's coping? Sometimes she gets down and it's difficult to pick her up mentally. She doesn't like to be sitting around waiting to get better, she has to be doing something.

We went to a health spa last week as a get away, it was nice but my mum finds it hard now to relate to people who are living 'normal' lives, where they only have to worry about trivial things etc. I know what she means as I feel attached to her world of cancer as well, it's hard to understand people when they are talking about "Christmas stress" etc, yeah right, try a journey to the consultant's office knowing they are going to diagnose your mum with cancer and not knowing how bad it will be. People ask us what we are doing for Christmas and we feel weird because we keep responding with "don't know" - all we care about is 3 or 6 months post treatment when we get our victory. We've learnt that health and happiness - and the little things like beautiful scenery etc - are what make life enjoyable and at the moment we can't enjoy them. Each day that stands in front of "NED day" is a hurdle, that includes Christmas. Just wish I could go to sleep and skip the next few weeks or months. Been 6 months now since it started, just wish it would end......

jcruz

Adam

I think it's very normal to have inflammation so soon after treatment.  Also I still have occasional bleeding and I'm 2 years post-treatment.  The tissue is easily torn and I don't know if that ever totally changes.  I hope someone who is more years out than me will answer this.

I can totally understand the feeling of it being difficult to relate to people outside of the cancer world.  Not long after I finished treatment I ran into a former colleague who knew that I had been ill.  The "how are yous?" were me saying I'm feeling better and trying to be hopeful and him going on and on about having a cold.  In my head I'm thinking "really? really? you're complaining to me about a cold?"

The waiting is so hard.  I have a friend who lives with cancer which is horrible and I worry about her even as she lives every day with happiness that the last scan shows no change in the tumor.  She was my cancer mentor and I was so fortunate to have someone to talk to and who walked me through these various stages of diagnosis, waiting, treatment, more waiting, laughing and crying.  I had doctors and friends suggest a support group but this is what worked best for me in those early months.  I also began therapy nearly a year after my diagnosis and still go every week.  It's been incredibly helpful.

My best to you and your mother

Janet

mp327

Hi Adam

Inflammation in the radiated tissue at this early stage in post-treatment is almost certain.  This can be aggravated with bouts of constipation or diarrhea or simply because the tissue is very friable.  I am over 6 years out of treatment and still have episodes of minor bleeding, especially if my bowels get cranky. 

If the oncologist does a digital rectal exam, he/she may be able to determine if the tumor has dissolved.  My medical oncologist has never done a DRE on me and has left that part of my follow-up to my colorectal surgeon and my radiation oncologist (who no longer sees me). 

As for relating to people, your mom will get more comfortable with that as time goes on.  Her confidence level has probably decreased some, just as mine did in the beginning, when I was worried about having accidents and being asked questions I was uncomfortable answering.  After some time had passed, I found myself almost getting angry when people who knew what I could gone through quit asking me how I was doing.  I guess after awhile when we appear to be healthy again, people forget what we've been through.  At 6+ years post-treatment, people rarely ask.  I am used to it now, but I certainly haven't forgotten where I've been.

It is still early in the post-treatment phase so just be patient.  The emotional recovery from this can take longer and be much more difficult than the physical part.  I know you want your mom back as she used to be and she will be at some point.  Do not give up on that and just love her and support her as much as you can.

Martha

0626june

very common

which is why they won't give you a definitive answer yet.  Adam, my husband is my support person and reading your posts gives me a deeper understanding of what he's going through too, so keep 'em coming, please.  Maybe this perspective, that merely being alive is a gift, and those trivial "problems" are ridiculous to worry about, isn't a bad perspective, after all.  It's difficult to seperate ourselves from our cancer diagnosis, which is why we feel so odd, being around normal people.  I'm hoping that will change, but I know I can never entirely go back to pre-diagnosis again.  I think that the more good exams she (we) get the less we'll identify with this and begin to feel a bit more like people around us.  Take care of yourself too, if possible. 

qv62

Adam26

I would love to chime in but it seems the others have said everything in my head, you are a wonderful son, keep the spirit.

Ouch_Ouch_Ouch

mp327 said:

Hi Adam

Inflammation in the radiated tissue at this early stage in post-treatment is almost certain.  This can be aggravated with bouts of constipation or diarrhea or simply because the tissue is very friable.  I am over 6 years out of treatment and still have episodes of minor bleeding, especially if my bowels get cranky. 

If the oncologist does a digital rectal exam, he/she may be able to determine if the tumor has dissolved.  My medical oncologist has never done a DRE on me and has left that part of my follow-up to my colorectal surgeon and my radiation oncologist (who no longer sees me). 

As for relating to people, your mom will get more comfortable with that as time goes on.  Her confidence level has probably decreased some, just as mine did in the beginning, when I was worried about having accidents and being asked questions I was uncomfortable answering.  After some time had passed, I found myself almost getting angry when people who knew what I could gone through quit asking me how I was doing.  I guess after awhile when we appear to be healthy again, people forget what we've been through.  At 6+ years post-treatment, people rarely ask.  I am used to it now, but I certainly haven't forgotten where I've been.

It is still early in the post-treatment phase so just be patient.  The emotional recovery from this can take longer and be much more difficult than the physical part.  I know you want your mom back as she used to be and she will be at some point.  Do not give up on that and just love her and support her as much as you can.

Martha

Bingo!

mp327 - I really relate to your reply to Adam26.

I don't remember my oncologist ever touching me, even at the first visit. The radiation oncologist was my exam guy and knows me well both inside and out.

I know what you mean about finding it hard to relate to non-cancer people. I had all three of my best friends die of cancer and palpably miss their presence. They would have been such a comfort to talk to throughout this process.

People see me up and around, looking presumeably healthy and active. They really don't want to hear that I'm in more pain now than when I had a cancerous tumor or that my platelets have dropped significantly and aren't responding to high doses of prednisone. They just want to hear that I am okay and tell me how cute my hair looks, so short and ever-so-much-more-curly than it used to be. (Myself, I think I look like an older Harpo Marx!) Some of them don't even want to hear that I had ANAL cancer, but I tell them anyway as I've come to enjoy seeing their discomforture. They also don't want to hear that my pocketbook is full of wash cloths, clean undies, and Barrier Cream Cloths for those times when I can't sprint fast enough to get to a bathroom.

Adam26 - My first follow-up visits, scans, and scoping was at 3 months. It took F O R E V E R to live through that time! I am so glad that your Mum has you there on her side and are supporting her through this. Santa must surely be watching.

And don't forget --- Barcelona is on your horizon!

nicotianna

Adam

Hi Adam - I met a woman who was diagnosed with Stage I AC in 2004.  She is cured & has no need for f/u at this time.  She had been treated w/the standard protocol.  Tell your Mum:)

Nic

Adam26

Hey guys,
Thanks for your

Hey guys,

Thanks for your replies. I used them to reassure my mum that the pains were normal and we saw her onc last week and he said the same and said he "absolutely expects you to be cured" so that was good!

Do you guys think fatigue is normal? She's 10 weeks post treatment and complaining about feeling tired. She's been out all day so it is probably expected.

Thank you for your story about the lady with anal cancer stage 1, I told my mum that and it made her happy to know she's ok now. 

Anyway, happy Christmas to everybody and a prosperous New Year : )

Hopefully 3 months NED is right round the corner, though the onc thinks 6 months is more likely for it all to have gone.....

nicotianna

Adam26 said:

Hey guys,
Thanks for your

Hey guys,

Thanks for your replies. I used them to reassure my mum that the pains were normal and we saw her onc last week and he said the same and said he "absolutely expects you to be cured" so that was good!

Do you guys think fatigue is normal? She's 10 weeks post treatment and complaining about feeling tired. She's been out all day so it is probably expected.

Thank you for your story about the lady with anal cancer stage 1, I told my mum that and it made her happy to know she's ok now. 

Anyway, happy Christmas to everybody and a prosperous New Year : )

Hopefully 3 months NED is right round the corner, though the onc thinks 6 months is more likely for it all to have gone.....

fatigue

Hi Adam - I think fatigue is normal.  I see others comment about it as well.  I just take a nap or go to bed.  I can because I am retired:)

Nic 

jcruz

Adam26 said:

Hey guys,
Thanks for your

Hey guys,

Thanks for your replies. I used them to reassure my mum that the pains were normal and we saw her onc last week and he said the same and said he "absolutely expects you to be cured" so that was good!

Do you guys think fatigue is normal? She's 10 weeks post treatment and complaining about feeling tired. She's been out all day so it is probably expected.

Thank you for your story about the lady with anal cancer stage 1, I told my mum that and it made her happy to know she's ok now. 

Anyway, happy Christmas to everybody and a prosperous New Year : )

Hopefully 3 months NED is right round the corner, though the onc thinks 6 months is more likely for it all to have gone.....

fatigue

I think fatigue is normal for a long time.  I expect everyone handles it differently.  At 10 weeks out I was still on medical leave and didn't usually have long days out but when I did I was wiped out.  I took a nap every day all through my recovery.  

Thanks for letting us know about your mom's dr. appt.

Merry Christmas to you and your family

Janet